# Weight gain Support Group



## UnXmas

This group is for people who are underweight. It's in the Diet forum, but I deliberated about putting it in the Support forum, and I hope it will be used for emotional support as well as talk about diets, as being underweight can be exhausting mentally as well as physically. Maybe this thread could be used to report your progress in gaining weight (and your set backs) and to post your weight-gain diet food diaries as well.


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## UnXmas

I've been underweight on and off and to varying degrees since I first got ill at age 13. My lowest ever weight was last year, when I went into hospital because of it, I had a bmi of 10. (I'm in the UK, and work in cms and kilos - I weighed 29kg and I'm 164cm tall - I had been measured at 165 previously, but was measured last week and apparently I've lost a cm. I think translates as 64lbs and and 5'4".)

I need an awful lot of calories, but no doctor has been able to work out why it is that I can eat so much and still lose weight. On top of that, I have gastroparesis and no appetite. I know every tip there is for weight gain, but still struggle and have gained only a few kilos over the past few months. I'm not following any particular diet. I used to have to be strictly very low fibre, but since my last surgery that's no longer necessary. I try and have a balanced diet and eat calorie-dense foods, and I get cravings, but I also find I suddenly can't stand foods I'd been fine with eating before. I've had food supplements, NG feeding, sugar-solution IVs and TPN, but now I'm just eating normal food, though my doctor tries forcing Ensures on me. To be honest I'm trying to gain weight now primarily just to avoid hospital.


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## Gail Jothen

Yah,   it is really frustrating.   And in the US all the food is promoted as good for weight loss!   We are a real minority.   64 pounds?    That is not good.
I hope you feel ok,  do you?  Or are you tired all the time?   I also have little appetite.   I miss liking food.


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## Basmah

My weight has been yo yo-ing since I was diagnosed at 16. There would be times when I would gain a considerable amount of weight, and then either a flare or bad meds would bring me back down. I didn't realize until a few years ago that I had some food sensitives, so I have slowly been detecting what I am sensitive to, and what triggers me with the help of a dietician and now a TCM doctor. The latter has been helping me out a lot with a bland high protein, low carb diet. while I am feeling great, I am now at 5'11" and 118lbs (180cm and 53.52 kg). It's going to take a while before I add more foods in, and possibly gain weight, but I would love to be in this support group.


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## cantthinkstr8t

I am getting tired of being called frail. My husband has been as supportive given the circumstances, but I know my weight loss bothers him.  He made the comment last week that he fell in love with me because of how much I used to eat.  He had never met a girl who could eat as much as me.  I go through periods of getting nauseous just thinking about food.  The next day or week, I could eat us out of house or home.  I just am not gaining weight because everything goes straight through me.  

And the frail thing, my husband calls me that, my family calls me it, and today my best friend said I was very frail.  I don't know why, but it strikes a nerve.


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## buttER

UnXmas 

Thanks for starting the group!

That is a terrible state to be in. I went down to under 40 kg, I cannot imagine any lower than that. What led you to being so underweight last year in particular? 

Where to start about the worst things about being severly underweight.

My weight loss was due to nausea and loss of appetite - caused by over a year of IBD at that point not diagnosed. Although I have never been normal weight. It seems to be a vicious circle, because the lower the weight they worse you feel, the more you lose weight........ I am now over 50 kg and want to gain more - very slowly but surely. I got the feeling I was stuck at 48 kg and then at 50 kg. One thing I remember reading and something that I apply every time I prepare something to eat: add one spoonful extra. You prepare how much you think you will eat, and then add a little bit more. It might be an extra teaspoon of jam, or an extra spoonful of cereal. Every little bit helps.

I have to admit that being sensitive to sugar, dairy, and fatty foods does not make it easy for me to put on weight.

I really wish you well. All those overweight people saying they wish they could give you theirs (does that happen to you?), I never know what to say! 

What are your steps for weight gain, and can you do something about the underlying cause? Have you tried any medication that might help to put on weight? I take anti-nausea medication when I need to and that really helps me. Just one or two days of not eating is enough for me to shed a kilo or more.

Also, how active are you?


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## Basmah

Hi cantthinkstr8t,

I know exactly what you mean. A couple of weeks ago, i saw some old co workers while I was doing some light duty at work. So many people told me how skinny I looked, and they weren't meant to be compliments. Someone told me I looked anorexic, and someone else just kept looking at me with concern (even though my labs have been better and my energy is better). It came to a point that when I was alone, I bursted into tears. I don't understand why if people know what you are going through, why would they say things to make you feel worse - and then they say things like, "We've got to get you to gain weight" as if they're actually going to actively help. It does strike a nerve after a while.


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## UnXmas

Gail Jothen said:


> Yah,   it is really frustrating.   And in the US all the food is promoted as good for weight loss!   We are a real minority.   64 pounds?    That is not good.
> I hope you feel ok,  do you?  Or are you tired all the time?   I also have little appetite.   I miss liking food.


I feel exhausted, but that's not just from being underweight, as I have in the past  been a healthy weight, and was still exhausted, though not quite so much. I generally feel the same at a very low weight as at a healthy weight (i.e. I feel awful whatever weight!), which is why I'm not motivated to gain other than to keep out of hospital. I used to try and keep a healthy weight in the hopes that my periods would start and I'd be able to have children at some point, but they didn't, and my various illnesses deteriorated to the point where normal life wasn't a possibility. I actually feel worse when gaining weight than when losing it, as all the extra food is awful for my digestive system; when they forced me into hospital last year all the extra food caused my bowel to perforate. :confused2:


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## UnXmas

cantthinkstr8t said:


> I am getting tired of being called frail. My husband has been as supportive given the circumstances, but I know my weight loss bothers him.  He made the comment last week that he fell in love with me because of how much I used to eat.  He had never met a girl who could eat as much as me.  I go through periods of getting nauseous just thinking about food.  The next day or week, I could eat us out of house or home.  I just am not gaining weight because everything goes straight through me.
> 
> And the frail thing, my husband calls me that, my family calls me it, and today my best friend said I was very frail.  I don't know why, but it strikes a nerve.


My doctor (GP) called me frail the day before yesterday. But my surgeons and parents say I'm resilient (that's the word both my surgeons and my mum used), because I recover from surgeries exceptionally quickly. I think that a very low weight can look much worse than it is. Not that there aren't very real risks with being underweight, but it's also possible to feel reasonably well and be able to cope well, but some people can sometimes not get passed the appearance. Perhaps the fact that we're so used to seeing healthy-weight and overweight people means that underweight people are more shocking to see.

But what does your husband mean by saying he fell in love with you because of how much you ate? What kind of basis for love is that?


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## UnXmas

King of Orange said:


> UnXmas
> 
> Thanks for starting the group!
> 
> That is a terrible state to be in. I went down to under 40 kg, I cannot imagine any lower than that. What led you to being so underweight last year in particular?
> 
> Where to start about the worst things about being severly underweight.
> 
> My weight loss was due to nausea and loss of appetite - caused by over a year of IBD at that point not diagnosed. Although I have never been normal weight. It seems to be a vicious circle, because the lower the weight they worse you feel, the more you lose weight........ I am now over 50 kg and want to gain more - very slowly but surely. I got the feeling I was stuck at 48 kg and then at 50 kg. One thing I remember reading and something that I apply every time I prepare something to eat: add one spoonful extra. You prepare how much you think you will eat, and then add a little bit more. It might be an extra teaspoon of jam, or an extra spoonful of cereal. Every little bit helps.
> 
> I have to admit that being sensitive to sugar, dairy, and fatty foods does not make it easy for me to put on weight.
> 
> I really wish you well. All those overweight people saying they wish they could give you theirs (does that happen to you?), I never know what to say!
> 
> What are your steps for weight gain, and can you do something about the underlying cause? Have you tried any medication that might help to put on weight? I take anti-nausea medication when I need to and that really helps me. Just one or two days of not eating is enough for me to shed a kilo or more.
> 
> Also, how active are you?


I've always lost weight quickly, but it's only relatively recently - the past couple of years - that I've needed such an insane amount of calories. I had surgery to give me an ileostomy in October 2013, and had post-surgical ileus (paralysis of the digestive tract) which caused a lot of weight loss. Then in 2014 I had a complication with my stoma and had further surgery. Then right after that a stomach bug. But I've also been phobic of eating for a long time, because eating a lot over a prolonged period causes permanent deterioration in my symptoms. And my phobia wasn't helped when, after being in hospital for weeks last summer under a specialist team of gastroenterologists and dieticians who treat severely underweight people (both those with anorexia and those with physical problems like IBD), and my small intestine became blocked - according to the surgeon it was because my intestine had formed a knot and because I was eating so much my intestine wasn't strong enough to push it all through - and then perforated. 

I'm not very active. I walk my dog every day, but don't do any strenuous exercise. I see a physiotherapist because my leg and arm were paralysed last year (long story), so I do some leg, arm, hand and finger exercises. The gastroenterologist and dietician I saw last year wanted me on bed rest! Literally, they insisted I use a wheelchair to get from my bed to the bathroom. Luckily the nurses realised how insane this was, that they let me walk outside the hospital. I was there four weeks that stay, and the gastroenterologist wanted me there a lot longer but another gastroenterologist said it was ridiculous for me to take up a hospital bed and discharged me. I think it's important I keep mobile - and my surgeons and physiotherapists think the same, so I walk daily, go up and downstairs a lot and do the exercises the physios taught me, but I don't do anything that would raise my heart rate (running, fast cycling, or anything like that), and I don't walk or do my exercises for more than about twenty to thirty minutes at a time. So on a typical day I'd do maybe one slow thirty minute walk and twenty minutes of exercises. Some of the exercises are raising my fingers and stretching my hand out, but some are things like going from a crouch to standing up five times in a row, or lowering myself into a chair then standing up again, which demand more energy than you would think! 

I'm on some antiemetics and have tried various PPIs for reux, and domperidome for appetite. I even lost weight while on prednisone.


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## UnXmas

I'm actually up to 35kg now. So from 29kg last June, that's 6kg in nine months. But I had major surgery last September, so that caused a temporary drop in weight. Is that a very slow rate of weight gain? The doctors expected me to gain a minimum of 1kg a week, but preferably 2kg a week. I thought at the time that was a stupid idea, if it was even possible, and it _was_ a stupid (for me anyway, maybe it's preferable for some people to gain weight quickly), so I'm nervous about rapid gaining now and want to keep it gradual. I've no idea how long it would take me to reach a healthy weight at this rate, I'm not even sure I could maintain a healthy weight long term anymore.

When I was in hospital to gain weight last year, prior to the blockage/perforation, the dietician kept increasing the amount of food and supplements I had to eat until I was gaining weight. I didn't start gaining until each day I was having three meals, three snacks, plus 1500 calories worth of supplements on top of that. Do any of you have to eat that much in order to gain weight? Does your digestive system handle it ok?


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## cantthinkstr8t

UnXmas said:


> But what does your husband mean by saying he fell in love with you because of how much you ate? What kind of basis for love is that?


He used to be a chef and loves to cook.  I would eat everything in sight and still never gain weight.  He uses humor to deal with stress-I think I really stress him out.


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## Basmah

Honestly, I think as long as you listen to your body, you will be just fine. No one can tell you how quickly you should gain weight, because the reality with this disease is that you cannot really control it. This disease is more about how you feel than how you look. As for me, I am just happy I am maintaining my weight at this point. I keep making soups every day or every other day (but today I am eating Salmon, yum!) - mostly 2.5 pounds of meat plus a pound of veggies a day - maybe more on days that I work out. I just received the best lab results in the longest time. So my advice is that even though doctors are telling you what to do, the best thing you can just do it take care of yourself. If you are gaining weight gradually rather than rapidly, at least you are gaining weight; if you are maintaining it, it means you are not losing any, et cetera. Be patient (it's hard!) Always look for the positive, and your healing process will go by in no time. Of course, you have a great support system here.


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## 24601

> The doctors expected me to gain a minimum of 1kg a week, but preferably 2kg a week.


Yep, this has always been my experience that the doctors have crazy expectations of how fast you can and should gain weight. I think they're just frightened to have a patient with a very low BMI and want to rectify that asap but don't realize that there can be negative consequences to a sudden massive increase in calories for your body, and to a rapid increase in volume of fluids too. I've found knowledgeable specialist dieticians in hospital to be a tempering influence on those kind of doctors - but they also told me that as dieticians they are often struggling to get the doctors to understand that they can't just demand that the patients be given x amount of calories extra a day and start putting on 4lbs a week.


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## UnXmas

Basmah said:


> Honestly, I think as long as you listen to your body, you will be just fine.


But my body is determined to cause me as many problems as possible.


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## cantthinkstr8t

24601 said:


> Yep, this has always been my experience that the doctors have crazy expectations of how fast you can and should gain weight. I think they're just frightened to have a patient with a very low BMI and want to rectify that asap but don't realize that there can be negative consequences to a sudden massive increase in calories for your body, and to a rapid increase in volume of fluids too. I've found knowledgeable specialist dieticians in hospital to be a tempering influence on those kind of doctors - but they also told me that as dieticians they are often struggling to get the doctors to understand that they can't just demand that the patients be given x amount of calories extra a day and start putting on 4lbs a week.


It is also very difficult to find someone who knows what they are doing.  I went looking for a dietician/nutritionist to help me get my weight up with all my dietary restrictions.  2 never called me back and the rest only specialized in people losing weight.  I would say maybe things have changed but this was only a few years ago.  I gave up.


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## 24601

Sorry to hear that cantthinkstr8t but I do relate in that the good dieticians have been the exceptions, I have met so many who were almost worse than useless. Often they just said to me that I ate so little that they couldn't help me. They definitely majored on totting up calorie consumption for people and that was pretty much it. Sad when you work hard to get an appointment and wait and they have nothing useful to contribute. I definitely gave up on dieticians and never made any more appointments and then met these really great dieticians as an inpatient in hospital. I do feel like it was a matter of luck but I was pleased since the doctors would throw out these numbers of calories they wanted me to consume and weight they thought it was possible to gain and the dieticians were there to say no, that's not possible or sensible. And with previous admissions where I'd been put on TPN my body had struggled with the sudden increase of calories and fluid. I wish we could all have access to such helpful and knowledgeable dieticians. I've certainly met the kind you talk about too


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## Gail Jothen

on a happy note,  I have gained 1/2 pound in 13 days.   I don't know what that is in kg.
I have a very limited diet,    sweet potatoes,  white potatoes,  eggs,   turnips and other root veggies (always cooked),  almond milk,   rice,  tomatoes,  and spinach.  And I put evoo on everything that is palatable with it.   Totally boring diet, but I have had no pain in 2 weeks.


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## UnXmas

I've found dieticians useless also. I was forced to see them my past couple of (long) hospital admissions - they had the same approach as the gastroenterologists: force me to eat more. That was it, not even anything about what to eat, and they had no idea why I need so many calories.


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## UnXmas

Gail Jothen said:


> on a happy note,  I have gained 1/2 pound in 13 days.   I don't know what that is in kg.
> I have a very limited diet,    sweet potatoes,  white potatoes,  eggs,   turnips and other root veggies (always cooked),  almond milk,   rice,  tomatoes,  and spinach.  And I put evoo on everything that is palatable with it.   Totally boring diet, but I have had no pain in 2 weeks.


How did you manage to gain weight on that? Do you have to eat large volumes of food? What's evoo?


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## buttER

UnXmas said:


> I'm actually up to 35kg now. So from 29kg last June, that's 6kg in nine months. But I had major surgery last September, so that caused a temporary drop in weight. Is that a very slow rate of weight gain? The doctors expected me to gain a minimum of 1kg a week, but preferably 2kg a week. ?


I was 40 kg in August 2012, now 51 kg in March 2015. And rising, hopefully. That is about 1 kg every 3 months. Sometimes a case of 3 steps forward and 2 steps back, but at least a trend in the right direction. 

In my case if I eat more than usual I also feel worse, and end up losing the weight again. So that is not a good strategy for long term weight gain. My doctor also said quick weight gain is not good for the body because then it reacts differently, like 24601 also says.

UnXmas you said you feel back no matter what weight you are. I used to notice that even if I was just a kilo or 2 below my "normal" weight I would already feel worse.

I do not necessarily eat more, but I do eat calorie rich foods. I try to have a supply of yummy things around me at all times: there is nearly always an apple crumble in the fridge (2 helpings a day!), a supply of biscuits and nachos, and I make my own crunchy cereal that starts my day already with about 600 calories. If I can't face breakfast straight away I will eat it later. There is a fine line with fatty foods, I need the oils and fats to help me gain weight, but too much eg olive oil used to fry chicken and my guts start complaining.

Completely agree with the comments about dietitians. They have the science but can't apply it to each individuals needs.


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## buttER

By the way, I never calorie counted until about a month ago, and out of interest I calculated how much I had consumed that day: 2600 calories! I think I must be having 2000-2600 per day and yet I am still skinny.


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## Basmah

I struggled with my dietician too - going to her was a decent starting point, but it was all about what I can't eat, and not what I can. i felt so lost , because she was telling me I can have cheese and corn every once in a while, but never mentioned how to appropriately prepare foods or anything. I couldn't tolerate healthy food, and my goal is to feel better! My decision to go to the acupuncturist and eat a low carb diet is extreme, and i would never suggest it to anyone unless they want to do it. However, I feel great, and my labs are showing major results. I lost a lot of weight and people are telling me i look anorexic is irritating as hell, but knowing that I found something brings me hope. I pray that all of you can find something that helps, because this disease can be so cruel.


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## Gail Jothen

To unXmas:   I don't think I eat a lot at all;   I get full really quickly.  I eat 5 eggs for breakfast and a 60 cal. snack about an hour after.   I only eat carbs the rest of the day.  It is winter and I have not been very active;  I get tired quickly and easily so maybe that is why I have gained on so few calories.    EVOO is Extra Virgin Olive Oil.  It makes potatoes taste better as I don't eat diary.   Maybe this 1/2 pound is a fluke;  I will have to wait and see.  I think 1/2 pound is about 1/4 kg.  Not much but better than the 7 pounds I lost between Jan and March.  We all need to pray for each other.  This disease is cruel and chronic and depressing.


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## UnXmas

King of Orange said:


> By the way, I never calorie counted until about a month ago, and out of interest I calculated how much I had consumed that day: 2600 calories! I think I must be having 2000-2600 per day and yet I am still skinny.


I don't count calories either, but I did a rough estimate and I reckon I'm eating around 2500 at the moment. In hospital last year I was having over 3000. Have your doctors ever talked with you about malabsorption, or done any tests that suggested it?


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## UnXmas

Gail Jothen said:


> To unXmas:   I don't think I eat a lot at all;   I get full really quickly.  I eat 5 eggs for breakfast and a 60 cal. snack about an hour after.   I only eat carbs the rest of the day.  It is winter and I have not been very active;  I get tired quickly and easily so maybe that is why I have gained on so few calories.    EVOO is Extra Virgin Olive Oil.  It makes potatoes taste better as I don't eat diary.   Maybe this 1/2 pound is a fluke;  I will have to wait and see.  I think 1/2 pound is about 1/4 kg.  Not much but better than the 7 pounds I lost between Jan and March.  We all need to pray for each other.  This disease is cruel and chronic and depressing.


The olive oil must help a lot - it has loads of calories. 5 eggs seems quite a lot to me.

I get full quickly too. Have you ever had a gastric emptying study? I had one last year, but then stopped seeing the doctor who ordered it so I never found out the results. I keep meaning to get them from my GP but every time I have an appointment I have so many more important things to talk about I keep forgetting about it.


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## Gail Jothen

I have not had a stomach test, but I think my stomach has shrunk because I have so often been in pain and hardly eaten.   5 eggs is only 350 calories;  an egg is 70 calories,   so it really isn't that much.  Plus, it is is the only protein I get daily except for my protein rice shakes.   In a couple weeks I will add other protein such as fish and see how my system responds.  Meanwhile,  I am out of pain!
No one has ever mentioned this,  but I wonder if having an IBD decreases proper digestion of nutrients in our what we eat......


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## InstantCoffee

Gail Jothen said:


> I have not had a stomach test, but I think my stomach has shrunk because I have so often been in pain and hardly eaten.   5 eggs is only 350 calories;  an egg is 70 calories,   so it really isn't that much.  Plus, it is is the only protein I get daily except for my protein rice shakes.   In a couple weeks I will add other protein such as fish and see how my system responds.  Meanwhile,  I am out of pain!
> No one has ever mentioned this,  but I wonder if having an IBD decreases proper digestion of nutrients in our what we eat......


Yes definitely. I struggle to gain weight fast no matter how much I eat, but when I cut to a super low calorie diet I lose slowly so it's not metabolism, that's for sure. 

The things we eat simple can't be fully utilized by a barely functioning digestive system.

I've been up and down since I started becoming gluten intolerant roughly around 2010. After I cut gluten and some other big triggers (canola, nuts, potato etc.) I finally stated gaining. 

I was at 99 lbs. 5'11.75" at my worst, my small intestine was almost sealed off from my stomach from inflammation from the gluten. 

In about 1 year or so I got up to 150 lb.s on mostly meat, candy and protein shakes. 







This came with dire consequences however. All the sugar caused my hydradenditis suprativa to flare, I got really bad inflammation / infections in both arm pits. I went on no-dairy / no-sugar diet for a few months, dropped to about 115 I think. 

Started over on a cleaner diet with a protein shake. 






I plateaued on this diet, couldn't break past 136











Managed to hit 135 before food intolerances reared their ugly head up and I lost orange juice, then chocolate, now I'm back to 125ish and struggling, I haven't been to the gym since last fall. 

Idk what's going on anymore. Everything gives me diarrhea.

http://www.amazon.com/Vitol-Russian...=1427497041&sr=8-2&keywords=russian+bear+5000 
This was the only protein shake I found safe. They almost all have sucralose in them.


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## Lady Organic

Ive discovered to joy of gaining weight by eating almond butter in rather large quantities since a few weeks. I have been in between 100 and 105 pounds for more than 10 years, and am currently at 110!


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## Poppysocks

Instant Coffee,

I've seen you post on bodybuilding.com

You should give sushi a shot and see how you feel. And STOP DRINKING THOSE WEIGHT GAIN SHAKES!!!! They are going to hurt you.

Cut out all the dairy (this includes protein shakes, you may be allergic to whey or casein), chocolate, and gluten.

My CRP has gone from chronically mid 4's to .10 (completely normal) in a matter of months (might've been only weeks but I don't get bloodwork done every week). All I eat right now sushi (salmon rolls and california rolls with salmon) and taco's. (with corn tortillas).  I am working on adding things to this regimen. But these two foods have turned my BM's into the best they've ever been, and my blood work has shown that my inflammation has been curtailed, not to mentioned I just feel a lot better overall.

You have to fix your intestines before you can worry about putting on weight. You have to figure out the right foods to eat that don't give you problems. I'm not saying what I do will work for you, but give it a shot and see what happens.


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## InstantCoffee

Poppysocks said:


> Instant Coffee,
> 
> I've seen you post on bodybuilding.com
> 
> You should give sushi a shot and see how you feel. And STOP DRINKING THOSE WEIGHT GAIN SHAKES!!!! They are going to hurt you.
> 
> Cut out all the dairy (this includes protein shakes, you may be allergic to whey or casein), chocolate, and gluten.
> 
> My CRP has gone from chronically mid 4's to .10 (completely normal) in a matter of months (might've been only weeks but I don't get bloodwork done every week). All I eat right now sushi (salmon rolls and california rolls with salmon) and taco's. (with corn tortillas).  I am working on adding things to this regimen. But these two foods have turned my BM's into the best they've ever been, and my blood work has shown that my inflammation has been curtailed, not to mentioned I just feel a lot better overall.
> 
> You have to fix your intestines before you can worry about putting on weight. You have to figure out the right foods to eat that don't give you problems. I'm not saying what I do will work for you, but give it a shot and see what happens.


I have no problems with dairy. 

As far as I know most sushi contains thing (like rice) I can't have. I also can't have any kind of tortilla. 

Oat has been the only grain lately that I've tried that I can safely digest.


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## UnXmas

> . I struggle to gain weight fast no matter how much I eat, but when I cut to a super low calorie diet I lose slowly so it's not metabolism, that's for sure.


Why do you have to eat a low calorie diet sometimes? I lose easily however much I'm eating. I've had periods where I'm eating very little, e.g. after surgery, and I still lose quickly.


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## Poppysocks

InstantCoffee said:


> I have no problems with dairy.
> 
> As far as I know most sushi contains thing (like rice) I can't have. I also can't have any kind of tortilla.
> 
> Oat has been the only grain lately that I've tried that I can safely digest.


I wouldn't knock it until you try it. The rice and seeweed in sushi is very sticky so it helps bind things together. Literally immediately after I started eating my BMs were the best they'd looked since having this disease.


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## InstantCoffee

UnXmas said:


> Why do you have to eat a low calorie diet sometimes? I lose easily however much I'm eating. I've had periods where I'm eating very little, e.g. after surgery, and I still lose quickly.


When I have to do an elimination diet after something I've been eating becomes a trigger, I cut to just meat and it's hard to eat more than about 1200 calories a day.



Poppysocks said:


> I wouldn't knock it until you try it. The rice and seeweed in sushi is very sticky so it helps bind things together. Literally immediately after I started eating my BMs were the best they'd looked since having this disease.


Idk I've tried a lot of rice grains in the past year and they've all made me sick. I'm hesitant to think one will be different.


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## UnXmas

InstantCoffee said:


> When I have to do an elimination diet after something I've been eating becomes a trigger, I cut to just meat and it's hard to eat more than about 1200 calories a day.


Literally just meat? Why?? (Sorry for all the questions, I'm just curious.)


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## UnXmas

Poppysocks said:


> I wouldn't knock it until you try it. The rice and seeweed in sushi is very sticky so it helps bind things together. Literally immediately after I started eating my BMs were the best they'd looked since having this disease.


Rice (white rice at least) is a very easy-to-digest food for many people with digestive issues (I've found it is for me, and I've seen quite a few posts here saying the same, and I assume it is for many others since it's part of the BRAT diet). Maybe it's that, rather than sushi in general that's helping you? Are you gaining weight on what you're eating now?

And I have the same questions that I had about InstantCoffee's diet:



> All I eat right now sushi (salmon rolls and california rolls with salmon) and taco's. (with corn tortillas). I am working on adding things to this regimen.


Literally just sushi and tacos? And again, why?

I know the theories behind exclusion diets and elimination diets, though personally I've found them to be decidedly unhelpful, but meat and sushi based diets are not ones I've come across anyone else mentioning before. I've also found limited diets are not conducive to weight gain. If you're struggling to eat enough, don't you want to be able to have whatever most appeals that you can tolerate?


----------



## Poppysocks

UnXmas said:


> Rice (white rice at least) is a very easy-to-digest food for many people with digestive issues (I've found it is for me, and I've seen quite a few posts here saying the same, and I assume it is for many others since it's part of the BRAT diet). Maybe it's that, rather than sushi in general that's helping you? Are you gaining weight on what you're eating now?
> 
> And I have the same questions that I had about InstantCoffee's diet:
> 
> 
> 
> Literally just sushi and tacos? And again, why?
> 
> I know the theories behind exclusion diets and elimination diets, though personally I've found them to be decidedly unhelpful, but meat and sushi based diets are not ones I've come across anyone else mentioning before. I've also found limited diets are not conducive to weight gain. If you're struggling to eat enough, don't you want to be able to have whatever most appeals that you can tolerate?


I'm working on adding other things to my diet. Maybe some gluten free dairy free wraps. But These two things have fixed my crp and my bowel movements, and it's slowly bringing my fecal cal to normal levels. I was introduced to sushi a month or so ago by a co worker who had celiac and it completely fixed my bowel movements very quickly. I have only just recently started focusing on trying to put on weight. If I stick to my regimen and don't skip meals I should be able to get back to 150 lbs very quickly. At about 140 ish right now


----------



## buttER

Gail Jothen said:


> I eat 5 eggs for breakfast and a 60 cal. snack about an hour after.


That might not be many calories but it does sound like alot of food to me!


----------



## buttER

UnXmas said:


> I don't count calories either, but I did a rough estimate and I reckon I'm eating around 2500 at the moment. In hospital last year I was having over 3000. Have your doctors ever talked with you about malabsorption, or done any tests that suggested it?


I havent really thought about it. I assumed my body still needs to repair from the long period of being seriously underweight, I can imagine alot of the organ systems were running on nearly empty. Being out and about on the bike every day means that I unfortunately lose a few calories through physical activity.

That plus needing to put on weight means I need a decent number of calories, I don't think 2500 is too many in this situation. Also I have never had any malnutrition apart from a horribly low vitamin D at some point.


----------



## buttER

Gail Jothen said:


> I have not had a stomach test, but I think my stomach has shrunk because I have so often been in pain and hardly eaten.   5 eggs is only 350 calories;  an egg is 70 calories,   so it really isn't that much.  Plus, it is is the only protein I get daily except for my protein rice shakes.   In a couple weeks I will add other protein such as fish and see how my system responds.  Meanwhile,  I am out of pain!
> No one has ever mentioned this,  but I wonder if having an IBD decreases proper digestion of nutrients in our what we eat......



Well done, if it helps keep up the good work with the diet. Good luck with the reintroduction of more food. I love fish, but mind the fatty ones (salmon completely messes me up, shame because it is delicious).

I am pretty sure IBD leads to malnutrition, especially if the small intestine is involved. But there are people better qualified to answer your question.


----------



## buttER

Poppysocks said:


> I wouldn't knock it until you try it. The rice and seeweed in sushi is very sticky so it helps bind things together. Literally immediately after I started eating my BMs were the best they'd looked since having this disease.


Watch out for the soya sauce! It usually contains wheat! A coeliac friend of mine didn't realise and got very sick.


----------



## Poppysocks

King of Orange said:


> Watch out for the soya sauce! It usually contains wheat! A coeliac friend of mine didn't realise and got very sick.


Yes it does. But the very minimum amount that I use doesn't seem to effect me.


----------



## buttER

Poppysocks said:


> Yes it does. But the very minimum amount that I use doesn't seem to effect me.


I meant it more as a warning to anyone that tries sushi and it makes them feel worse: it might not be because of the rice/seaweed/fish! 
I can eat sushi, but not with the soya sauce (soya and wheat are no-nos).


----------



## UnXmas

King of Orange said:


> That might not be many calories but it does sound like alot of food to me!


I was thinking the same thing - a lot of calories doesn't mean a low volume of food. And vice versa - a few teaspoons of peanut butter is something I often eat to get a boost in calories without having to eat all that much food.


----------



## UnXmas

Poppysocks said:


> I'm working on adding other things to my diet. Maybe some gluten free dairy free wraps. But These two things have fixed my crp and my bowel movements, and it's slowly bringing my fecal cal to normal levels. I was introduced to sushi a month or so ago by a co worker who had celiac and it completely fixed my bowel movements very quickly. I have only just recently started focusing on trying to put on weight. If I stick to my regimen and don't skip meals I should be able to get back to 150 lbs very quickly. At about 140 ish right now


So it's just coincidence that you found sushi? You didn't choose to start eating it because you thought it would help?


----------



## UnXmas

Lady Organic said:


> Ive discovered to joy of gaining weight by eating almond butter in rather large quantities since a few weeks. I have been in between 100 and 105 pounds for more than 10 years, and am currently at 110!


Congratulations on your weight gain, Lady Organic !  I've found peanut butter very helpful. I keep meaning to be more adventurous with nut butters. I know I've seen cashew nut butter in the supermarket.


----------



## Poppysocks

UnXmas said:


> So it's just coincidence that you found sushi? You didn't choose to start eating it because you thought it would help?


I was introduced to it by a co worker who has celiac and follows a gluten free, dairy free diet. I was already dairy free. She was the one who I started eating sushi with, and she also suggested I switch out my wheat tortillas with corn tortillas. So I wasn't really sure what it would do, but I've been tinkering with my diet for the past 2 years and I was willing to give hers a shot for a little while to see if it helped.

I started eating it and immediately I noticed how much better it looked when I went to the bathroom. There were a few tweeks I've made a long the way. I can't eat all sushi, only certain kinds, preferably with salmon.


----------



## InstantCoffee

UnXmas said:


> Literally just meat? Why?? (Sorry for all the questions, I'm just curious.)


Because it's my only 100% guaranteed safe food. 
I have a LOT of triggers and some of them come and go.

Serious / dangerous triggers:
-wheat
-canola / corn oil
-potatoes
-nuts
-high fructose corn syrup
-apples, pears, certain fruits 
-black pepper
-non-perishable / refrigerate only meats due to preservatives / processing

Mixed results/uncertain:
-high fiber 
-high sugar intake
-onions
-peppers
-teas (chamomile is safe. Green/black teas is not. Haven't played around too much with others because I don't like tea enough to be worth the gastric suffering.) 
-yogurt. All the ones I've tried have triggered me. 
-0 calorie sweeteners. Sucralose = very bad. Others are mixed results / uncertain. I chew sugar free gum regularly, as long as there's no sucralose. 

On again / off again:
- olive & coconut oil
-chocolate
-milk (can usually fix this one with lactase pills and Kefir supplementation, eventually I don't need them, can drink up to a quart without problem, sometimes a half gallon in one day.)
-assorted vegetables (carrots, tomatoes, cabbage, on again/off again) 
-various seasonings (cayenne, paprika, chipotle seem to come and go)
-various fruits and melons, probably dependent on fiber but maybe other factors. Strawberries, oranges, cantaloupe, tomatoes, usually safe. 
-alcohol. Was safe until the end of last year. Now gives me loose bowel movements with bile in them. 

100% Safe:
-meat
-eggs
-low-lactose cheeses
-honey
-certified gluten free oats
-coffee, depending on brand/source


----------



## Basmah

I find my exclusion diet extremely helpful right now. Nothing else has really worked for me up until this point, and they don't last forever. Right now my focus is on feeling better, and the weight gain will come eventually. Plus, I actually eat more than I have in the past, so I know I am not malnourished. I used to think elimination challenges were extreme, but I am glad I just gave it a shot. It works for some people, and doesn't work for others. To each their own. I can't wait until I can eat sushi and peanut butter again though (not together, haha)


----------



## UnXmas

> Because it's my only 100% guaranteed safe food.


So what would you do if meat becomes one of your triggers? And how would you know?


----------



## Basmah

UnXmas said:


> So what would you do if meat becomes one of your triggers? And how would you know?


Hey UnXmas, I appreciate that you are trying to help out by challenging others to think, but asking questions to things that haven't happened yet could be counterintuitive. It may add stress, which is definitely not good for people with GI issues. Let folks be comfortable with what they are doing, especially if it's working out for them right now.


----------



## InstantCoffee

UnXmas said:


> So what would you do if meat becomes one of your triggers? And how would you know?


I don't believe it ever will because of how digestion and crohn's works. I would know the same way I do for any other food though. Cut back to a bare minimum until I'm eating just the meat with no added ingredients. If I still get sick that would be the trigger. 

No trigger foods = no symptoms. I've never gone more than a few months without but I know it can be achieved.



Basmah said:


> Hey UnXmas, I appreciate that you are trying to help out by challenging others to think, but asking questions to things that haven't happened yet could be counterintuitive. It may add stress, which is definitely not good for people with GI issues. Let folks be comfortable with what they are doing, especially if it's working out for them right now.



I'm not worried about it. Most likely my rise and fall of triggers is linked to SIBO which as far as I know is only stimulated by carb intake, which is why it's likely to be set off by grains, sugars, and lactose. I believe things like fiber sensitivity are a bi-product of the SIBO and can be reversed by taming it with proper diet. 

Every time I've gotten worse it has followed a period of excessive, unhealthy sugar intake. 

There's simply no reason for me to believe that meat would ever become a trigger. If I went on a pure meat diet, I could probably starve the SIBO to some extent but it would be really hard on my body and my mind. I've actually done it before. The biggest problem is your brain uses glucose as its primary energy source, so your body has to, over time, convert to ketogenic metabolism and you have to replace the carbs you're not getting with high amounts of fat to compensate. Very unfun diet to try to maintain. Your cravings for sweet things initially hit absurd levels.


----------



## Basmah

I have to compensate my low carb intake with high fat meats as well. I try to buy whole chickens and turkey breasts for soup, and buy separate thighs (since those areas of the body tend to have the most fat) if they're less than 4 lbs. I always mix them with 85% lean ground beef. I don't have SIBO, but I never realized how much sugar had an impact. I even gave up fruit for a month because my cravings would make me so miserable the next day. I now can have steamed apples and pears without any issues. It is an incredibly boring diet, but I am enjoying life more now then when I ate more of a variety and still felt crummy.


----------



## Basmah

It's sometimes hard to tell what people's intentions are in the internet, but I don't think UnXmas' is trying to worry you. She's expressing her opinion, which is great and welcomed here, but it's unnecessary to question what someone else is doing if it works for them. That's why I tell people that what I may be doing is extreme to some, but I have tried so many other things before - doesn't mean I think anyone else should do it. They just need to find their own way. Plus, I feel like we're questioned enough by our families, friends, coworkers, etc. I had to tell my dad the other day to please stop talking about how much time I spend in the kitchen simply because people outside of home are constantly commenting on how my diet is making me too skinny. 2 different things, but it gets irritating after a while lol.


----------



## UnXmas

Someone eating nothing but meat is not something I've heard of before, so I have a lot if questions about it. I also wasn't sure (and I'm still not sure) how it helps with weight gain. I haven't expressed an opinion, I've just asked questions.


----------



## Basmah

Oh okay, I got you. As I said before, it's sometimes hard to read people through the internet.


----------



## InstantCoffee

UnXmas said:


> Someone eating nothing but meat is not something I've heard of before, so I have a lot if questions about it. I also wasn't sure (and I'm still not sure) how it helps with weight gain. I haven't expressed an opinion, I've just asked questions.


Eating a food you can fully and safely digest will always trump any quantity of trigger food. This is why I highly recommend anyone with any extreme symptoms try elimination diets. Many are scared of 'giving up' their already limited diet, but if what you're eating is making you sick, it's not really helping you much at all is the problem. 

Like Basmah said, eating a limited diet and feeling good is much more satisfying than eating things that make you sick and have variety.

If you're experiencing diarrhea then your bowels are moving faster than your body's ability to break down and absorb the food. I don't think I need to explain how bad vomiting is lol.

If I've been eating trigger foods for 1-2 weeks things get really bad. 

For example garlic just started for me about 3 weeks ago, I didn't figure this out until last night. Frequent diarrhea, sleep loss, gas, etc. It took me a long time to figure out because I've been eating garlic safely for 3 years and I use it as my primary seasoning on all meats. I was blaming cooking oils, dairy, all sorts of other things but cutting them never helped. 

When I eat a trigger food it often starts with diarrhea, if I keep eating it eventually it reaches a point where my digestion slows down and the food won't leave my stomach, I don't fully understand it but it seems that my intestines fill up with bile as an attempt to digest the food and blocks it from emptying into the intestines. I've thrown up food I've eaten as late as 12 or so hours after consuming it. Healthy digestion should complete in about 7. 

Meanwhile I'm rapidly expelling liquid waste, constantly running to the bathroom, and end up dehydrated, and feeling extremely cold. If I throw up the food still in my stomach the problem shuts down much faster. It's like the food triggers symptoms almost immediately upon entering the small intestines, I sometimes know in the middle of eating the food. 

Hoping now I can get back on track with my weight gain, going to have to find some new spices to use.


----------



## UnXmas

Thank you for explaining, InstantCoffee, and I'm sorry if my questions were annoying, but as you said, a "pure meat diet" would be veryunhealthy, and I think it's appropriate to question something potentially dangerous. 

I've had very different experiences with elimination diets: the more I cut out, the sicker I got and the more weight I lost. I used to benefit from eating a low fibre diet up until my last surgery, though I had no specific trigger foods, which was one reason elimination diets weren't good for me - I could improve my symptoms by changing my diet as a whole, but not by eliminating and eating specific foods. I know a lot of people do benefit from eliminating foods, but I think you would be an exception if you are symptom-free when you avoid all your trigger foods. A lot of people will have symptoms no matter what they do and don't eat, which must make it much harder to identify trigger foods.


----------



## Basmah

Yeah, I agree that people should question all diets, even the "healthy, whole foods" lifestyles. I only get irritated when people are like, "that person is eating so and so; he doesn't know how much he is damaging himself". (I am right now thinking about a blogger who is primal, and ridiculing a man with CD who brought awareness to the disease by eating free unlimited food at the Olive Garden...nevermind that he said he was in remission, and altered every meal to cater to his needs). It took a whole bunch of research for me before I decided that the elimination diet was the way to go - before, I was very resistant to the idea. I am glad I am doing it now, though.

It is so hard and frustrating to identify trigger foods, and this disease is already difficult enough without the extra effort you have to put into it to at least minimize the symptoms. I really hope you find something that benefits you, UnXmas. I might have missed this before, but what are some things you are able to at least tolerate at the moment?


----------



## UnXmas

I can tolerate pretty much anything at the moment. My stoma used to block on even small amounts of fibre, but since my last surgery about six months ago, which involved creating a new stoma, I haven't had that problem and have been cautiously testing foods I haven't been able to eat for years, though since most of them are fruits, vegetables and whole grains, it doesn't really help with weight gain. I just can't seem to get enough calories in no matter what I eat.


----------



## InstantCoffee

UnXmas said:


> Thank you for explaining, InstantCoffee, and I'm sorry if my questions were annoying, but as you said, a "pure meat diet" would be veryunhealthy, and I think it's appropriate to question something potentially dangerous.
> 
> I've had very different experiences with elimination diets: the more I cut out, the sicker I got and the more weight I lost. I used to benefit from eating a low fibre diet up until my last surgery, though I had no specific trigger foods, which was one reason elimination diets weren't good for me - I could improve my symptoms by changing my diet as a whole, but not by eliminating and eating specific foods. I know a lot of people do benefit from eliminating foods, but I think you would be an exception if you are symptom-free when you avoid all your trigger foods. A lot of people will have symptoms no matter what they do and don't eat, which must make it much harder to identify trigger foods.


Best I can guess is that intestinal flora works both ways. 
If you have a healthy gut flora balance, starving it of the foods it needs to survive could be killing it off leaving your body to have to digest food in other ways (increased acid, bile production etc.) 

It's also possible Crohn's is different conditions with a blanket diagnosis and mine is different considering I seem to be one of the few that's completely untouched by dairy.


----------



## UnXmas

It wasn't because of flora that elimination diets didn't help. Mainly it was just that I don't have any trigger foods, so I was never going to improve as is supposed to happen. Then eating diets of just a few foods either made me sicker in that I lost weight because I couldn't eat enough (e.g. when just eating rice or similar plain foods), or they made me sicker by ruining my digestive system because the diet was too high in fibre (e.g. diets that forbid all processed food and consist of a lot of vegetables and nuts) and/or too much hard-to-digest foods like meat.


----------



## buttER

Colonoscopy prep + travelling on holiday + PMS and period = expecting to lose quite alot of weight in the next few days.

As you all know, it is much easier to lose weight than to put it back on. The doctor doesnt realise how demoralising a colonoscopy prep is just in terms of losing precious weight.


----------



## InstantCoffee

UnXmas said:


> It wasn't because of flora that elimination diets didn't help. Mainly it was just that I don't have any trigger foods, so I was never going to improve as is supposed to happen. Then eating diets of just a few foods either made me sicker in that I lost weight because I couldn't eat enough (e.g. when just eating rice or similar plain foods), or they made me sicker by ruining my digestive system because the diet was too high in fibre (e.g. diets that forbid all processed food and consist of a lot of vegetables and nuts) and/or too much hard-to-digest foods like meat.


I can recommend you the protein shake I get, it's the ONLY one on the market I can safely digest, but it's hard to get. It's from Russia and the price fluctuates between $35 and $50 week to week on Amazon, I have to order off other sites to get good deals sometimes. 

It's called Russian Bear 5000, it also has all your daily recommended vitamins and minerals, medium chain triglycerides and a bunch of herbal weight-gain and health supplements in trace amounts like colostrum, yohimbe bark, tribulus, some others, feel free to look them up.

The sugars are from glucose polymers which is why I believe it's so safe for my belly, low fructose content.


----------



## UnXmas

King of Orange said:


> Colonoscopy prep + travelling on holiday + PMS and period = expecting to lose quite alot of weight in the next few days.
> 
> As you all know, it is much easier to lose weight than to put it back on. The doctor doesnt realise how demoralising a colonoscopy prep is just in terms of losing precious weight.


When I was in hospital last year to gain weight, and I wasn't supposed to go home until reaching a target weight (though in the end I did go without reaching it), they made me have an upper endoscopy (no food for half a day) then a small bowel MRI (no food then drink the laxative contrast). When they then ordered a pill cam, I refused to have it.


----------



## UnXmas

InstantCoffee said:


> I can recommend you the protein shake I get, it's the ONLY one on the market I can safely digest, but it's hard to get. It's from Russia and the price fluctuates between $35 and $50 week to week on Amazon, I have to order off other sites to get good deals sometimes.
> 
> It's called Russian Bear 5000, it also has all your daily recommended vitamins and minerals, medium chain triglycerides and a bunch of herbal weight-gain and health supplements in trace amounts like colostrum, yohimbe bark, tribulus, some others, feel free to look them up.
> 
> The sugars are from glucose polymers which is why I believe it's so safe for my belly, low fructose content.


Really not my kind of thing: I'm female and weigh 35kg (up from 29kg).


----------



## buttER

UnXmas said:


> When I was in hospital last year to gain weight, and I wasn't supposed to go home until reaching a target weight (though in the end I did go without reaching it), they made me have an upper endoscopy (no food for half a day) then a small bowel MRI (no food then drink the laxative contrast). When they then ordered a pill cam, I refused to have it.


I love their methods for making sure you put on weight!


----------



## UnXmas

Well to be fair to them, I'd been there weeks and was eating over 3000 calories a day and had hardly gained anything. On admission, they were assuming I had anorexia in addition to physical problems, they assumed I'd been eating hardly anything and expected the weight to go on when they made me eat a lot. When that didn't happen they had a panic and ordered every test they could think of.


----------



## Basmah

Good for them to cover all the basis to make sure you gain some weight. I remember a few years ago when I was hospitalized, and they were treating me for anorexia as well, even though I wasn't. One of the IV's they gave me had some sort of sugar substance in it to give me nutrients. The problem was after a few days, I was eating less and less, and I knew it was because of the IV. The doctor was insistent on giving me a colonoscopy (after doing all of these other tests) to see what's wrong, but I argued with her that I wanted to go home since I knew what was making me not hungry. I did get to go home the next day, and ate like a horse lol. I am glad to hear that you are gaining weight, UnXmas. I have been at 118lbs for a few months now, but I just weighed myself at the gym today, and it said 121. Woohoo, I am getting there!


----------



## Gail Jothen

I don't have a scale so don't know if I am losing weight,  but my stomach hurts a lot and I don't want to eat.   I am on prescription Prilosec and endecort and take carafate before each meal but it does not seem to calm my pain.  Any suggestions?   I do have a nutritionist and she just changed my diet....added fish and ground turkey,  I had the turkey for dinner last night and think it may have caused the pain.


----------



## UnXmas

Turkey and fish are generally pretty well tolerated. Sometimes you can just get symptoms whatever you eat.


----------



## cantthinkstr8t

I just got back from my dr.  My mom went with me, she told the dr that I was starting to look like her mom before she died.  She then proceeded to call me gaunt, and freak out saying that with how thin I was, she was afraid I would be dead in 6 months.  I think she was being a tad dramatic.


----------



## Gail Jothen

Actually it takes quite a while to starve to death,  especially if you are still eating as we are even tho our food is not being digested right nor do we eat as much as others who are overweight.   My mom decided to die (she had become blind and was bored with life)  and she was very skinny when she decided to die and it took 3 months.  Of course she drank liquids,  just not any food.   She died very peacefully at home;  she was 88 years old.
Yes,  your mom is not correct;  you are not going to die for a long while even with crohns


----------



## UnXmas

As I said in my first post:



> . My lowest ever weight was last year, when I went into hospital because of it, I had a bmi of 10. (I'm in the UK, and work in cms and kilos - I weighed 29kg and I'm 164cm tall - I had been measured at 165 previously, but was measured last week and apparently I've lost a cm. I think translates as 64lbs and and 5'4".)


I even had emergency surgery at this weight last year, and I'm still living (though the surgeon did warn me before the surgery that I might not survive it).

I seem to adapt very well to low weights. I'm not sure how other people would though. But while you probably won't die, being underweight can lead to chronic health problems, so it's still best avoided.

What did your doctor say, cantthinkstr8t?


----------



## cantthinkstr8t

What did your doctor say, cantthinkstr8t?[/QUOTE]

He said I have lost too much weight too quickly and he doesn't really know what is wrong.  He has no idea what is going on and I am a "rare" case because I have other health issues.  

He thinks I may have an obstruction so I am scheduled for a CT scan on Monday.  They ganged up me again not working.


----------



## Gail Jothen

I lost weight quickly,   37 pounds (more than 16 kg) in 2 months.  I was sent to a psychiatric hospital to learn to think positive!    I also had lots of pain.   I tried various helps (naturopath,  acupuncture etc.)   but after 4 years of losing more weight and being depressed,  I had a pill cam and the (new)  doctor found 9 ulcers in my upper intestine which can be found only by a pill cam.   Other tests do not see or go to that area.   I am still on anti anxiety medicine from the psychiatric hospital and would love to get off them as I think they dry out my body too much,  including my stomach,  which is not healthy for digestion.
I guess this is why doctors "practice" medicine.


----------



## UnXmas

Hi guys, I've written some weight gain tips as I thought it could be a useful thing to add to this thread. They're pretty basic, but if anyone's got any more tips, or lists of high calorie foods, recipies, etc. feel free to add them to the thread.

*Unintentional weight loss or an inability to gain weight can occur because you're not consuming enough calories (e.g  due to lack of appetite) and/or because of malabsorption. Weight loss may need to be addressed medically in addition to addressing your diet.
*
Weight gain diet tips:

- Exercise is healthy but does burn some calories, so limit strenuous exercise. If you're very underweight you may need to limit all physical activity.

- Eat what appeals to you, even if it's not healthy. It's easier to eat if the food tempts you. If you're very underweight, it can be better for your health to eat some junk food in the short term rather than force down only healthy food and fail to gain weight.

- Eat little and often.

- Consume high calorie drinks. Liquids are less filling than solids.

- Your doctor may suggest supplements like Ensure, Fortisip or Boost. These provide all the nutrients you need (so you won't need to fill up on low-calorie vegetables in order to get vitamins).

- Eat high calorie foods. This one's obvious, but it may be worth checking you're not mistaken about the calorie content of your food.


----------



## JeffBee

Thanks for getting me over to this thread.  It makes sense to eliminate gluten if you read how it flattens the villi in your small intestine and prevents absorbption of nutrients.  As mentioned in other thread I have had Crohns for over 40 years with a large length of my small intestine removed about 28 years ago.  They took a tiny bit out 4 years ago and widened the inflammed sections (strictureplasties).  I have never been over 140lbs and now I weigh in at 128lbs.  Most of my life, so far, I have weighed about 136 (5'/9").  I love most every food and never loose my appetite, but the food slides right through me.

I would like to hear some more encouraging stories about gluten-free diets.
Thanks! --Jeff


----------



## Gail Jothen

Jeff, I have been gluten free for about 3 years and it has definitely helped.  I have used the FODMAP diet which has helped me the most.  I was weaning off Budesonide (endecort) recently so had a flare up and dr put me on mercaptopurine, and my stomach has been hurting a lot which I think may be the mercaptopurine,  so am going off it and trying infusion.   So I can't tell you gluten free cures you but if I ate gluten I would be much worse.
I read somewhere that bread today has more yeast than years ago as bread companies want the bread to rise quickly, and it causes the gluten to be stronger.    Here's the site:



http://www.motherjones.com/environment/2015/02/bread-gluten-rising-yeast-health-problem


----------



## Basmah

I went gluten free first, and it helped me out a lot. I found out though that I was sinsitive to other things, so I am now eating a bland diet of meat, cooked veggies, and cooked fruit. can only have some olive and sesame oil, and now a little soy sauce with no problem, but I am not eating any dairy, grains, or nuts at the moment. It's seriously helping me out a lot. I was on 100mg of mercaptopurine a day, and now I am at 63.5 (will reduce to 50 after my colonoscopy this Thursday). It's helped me out so much..my energy and mood are better, and my inflammation rates are going down. I won't say that gluten free cures you, but actively trying to figure out what triggers you (not just food, but exercise, work, general lifestyle) will make living with this disease more tolerable.


----------



## Gail Jothen

Well,  I am jealous mercaptopurine helped you so much.  I have been on it 3 weeks and have been having a LOT of stomach pain which can be a side effect.  I am seeing my dr. on Wed. and he may give me mercaptopurine as an infusion.  (My husband jokes "immersion." I suppose it costs a lot more.
I am flying to MN Thursday to help babysit my 2 grandchildren and there is no way I can do that feeling the way I feel today.


----------



## JeffBee

Thanks so much Gail and basmah.

I know that everyone in this group knows there is no universal cure for IBD.  When you have a disease like Crohns you realize just how unique we are and can't simply follow a specific diet or multiple diets(I have tried a lot) without monitoring and testing your reactions.  As a teenager, when I was diagnosed with Crohns my GI Doc peeled of a "bland" menu from a pad and told me to follow the diet.  He gave the same diet to all his patients.  I think of him every time I eat a handful of almonds (well chewed) or a raw vegetable salad (I eat daily).  They were both forbidden items.  By the way, I soak my raw almonds in water for about 8 hours and peel the skins.  When I forget to soak in the evening I can still eat some, but prefer the taste and texture after soaked.

Yesterday I downloaded a FODMAP app on my phone to remind me of the foods That don't digest well.  I have practiced Food Combining for years and sometimes eating a forbidden food by itself or with acid or base foods gives me no problems.

I feel good about eliminating gluten, but i have to get enough calories to put some "meat" on my bones.


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## Gail Jothen

Jeff,  thanks for the info on almonds.  They are so good for us and I don't eat them as it hurts.    I will try your technic and maybe I can eat them.   I desperately need to gain weight.  What about soaking cooked almonds?   Would that be even easier to digest?   Why do you use raw almonds?   and what do you mean about food combining,  please?  And does anyone eat avocados?   It is a no no on the FODMAP diet, but high in good fat.


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## JeffBee

Gail, I read this book back in the 60's.  I think it was published in the 50's.  A lot of info has stuck with me.  Check the food combining charts first. http://www.soilandhealth.org/02/0201hyglibcat/020195.shelton.combining.pdf

Raw almonds are the way they come out of the shell with skins.  Skins are difficult to digest for some people.  Soaking them for 8 or nine hours (I use distilled H2O) is fine.  They don't need to be cooked.  Remove skins. If you are a bit concerned about chewing, eating, digesting then put a handful in a high speed blender with a few ounces of H2O.  You just made almond milk (but a tiny bit chunky depending on your blender).


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## UnXmas

Gail Jothen said:


> And does anyone eat avocados? It is a no no on the FODMAP diet, but high in good fat.


I used to eat a lot of them because they're one of the few fruits which are ok on a low fibre diet and which don't cause stoma blockages. They're high calorie compared to other fruits and vegetables. But since my last surgery and getting my new stoma which doesn't block I've been so glad I can eat all the fruit and vegetables I like and am no longer so limited, so even though avocados have more calories I need a break from them!


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## Gail Jothen

thanks, Jeff and UnXmas.   I am going off mercaptopurine pills and may be trying infusion so maybe I will feel like eating.


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## buttER

UnXmas said:


> Hi guys, I've written some weight gain tips as I thought it could be a useful thing to add to this thread. They're pretty basic, but if anyone's got any more tips, or lists of high calorie foods, recipies, etc. feel free to add them to the thread.
> 
> *Unintentional weight loss or an inability to gain weight can occur because you're not consuming enough calories (e.g  due to lack of appetite) and/or because of malabsorption. Weight loss may need to be addressed medically in addition to addressing your diet.
> *
> Weight gain diet tips:
> 
> - Exercise is healthy but does burn some calories, so limit strenuous exercise. If you're very underweight you may need to limit all physical activity.
> 
> - Eat what appeals to you, even if it's not healthy. It's easier to eat if the food tempts you. If you're very underweight, it can be better for your health to eat some junk food in the short term rather than force down only healthy food and fail to gain weight.
> 
> - Eat little and often.
> 
> - Consume high calorie drinks. Liquids are less filling than solids.
> 
> - Your doctor may suggest supplements like Ensure, Fortisip or Boost. These provide all the nutrients you need (so you won't need to fill up on low-calorie vegetables in order to get vitamins).
> 
> - Eat high calorie foods. This one's obvious, but it may be worth checking you're not mistaken about the calorie content of your food.


Thanks for that UnXmas. I agree with going with what you want to eat and not worrying about is it healthy. Fruit and veg = nearly no calories. I am a vitamin pill fan.

The advice that stuck with me was always:
- add an extra spoonful to the plate
- cut the slice (bread, cake, cheese, you name it) a bit bigger
- slather on a bit more spread or filling
- take an extra sip

I think about it now every time I prepare or serve food for myself. Those little extras add up.

Personally I think eating at regular times helps because then the body expects food and gears up for it. It's not always possible (I often skip breakfast because I can't face it).

Oh yes, and the days I feel nauseous and can't face food I pop an anti nausea pill and then I can usually eat a decent amount. Is that good advice, I don't know?


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## buttER

UnXmas said:


> I used to eat a lot of them because they're one of the few fruits which are ok on a low fibre diet and which don't cause stoma blockages. They're high calorie compared to other fruits and vegetables. But since my last surgery and getting my new stoma which doesn't block I've been so glad I can eat all the fruit and vegetables I like and am no longer so limited, so even though avocados have more calories I need a break from them!


I haven't checked out the FODMAP diet but every time I try an avocado it makes me sick. Shame because I love them.


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## buttER

JeffBee said:


> I would like to hear some more encouraging stories about gluten-free diets.


I am another one who believes they have been helped going gluten free. My diarrhea was fatty and sticky and pale, and that changed when I went gluten free. I do not feel bloated any more and I am certainly less nauseous. It is not the whole answer but I think I am better without it. Put it this way, I don't want to restart to see what happens.

It is not the easiest diet (married to a french man - baguette, croissants, pastries.......), good alternatives are hard to find and it's worth investing in a gluten free baking book if you have time to prepare things yourself. I make my own cereal, bread (from a bread mix), biscuits, cake. The shop bought stuff tends to be too high in sugar and fat for me.


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## JeffBee

I know loading up on calories is important for weight gain, but if my, reduced length, small intestine is not functioning efficiently and my absorption rate is miniscule then I don't know if quantity is always the best approach.  Some days I see a 3 to 4 lb difference in weight from the time I go to bed to just after a visit to the bathroom in the morning.  The quantity leaving my body is huge.  If the Villi in my small intestine are not transporting nutrients or my enzymes are not doing their job, I can graze every half hour for 12 hours and never see a permanent weight gain.  How do I fix "my machine"?  Is medication the answer or diet modification.  I know gluten-free is a first good step.


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## Gail Jothen

I have the same problem.  I really don't eat much as stomach pain has shrunk my stomach, but my BMS seem as big as the amount of food I eat.  Therefore,  how can I gain weight?
I asked my GI but he did not give me an answer.   I think IBD must prevent our bodies from absorbing food as it should if healthy.  But it is just a thought,  I have no science for this opinion....except I have so much trouble gaining weight even when I eat well.   I look anorexic, but I know I am eating more than someone who is anorexic.   ???????  I have no answer for you, JeffBee,  I'm sorry.


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## UnXmas

I don't think size of bowel movements is relavent. Bowel movements can vary in volume depending on their water content and the amount of fibre you're eating more than on the overall amount of food you consume or calorie intake.

I eat loads more than people with anorexia too - I've had a whole team of experts completely unable to explain why, while they monitored my food intake for weeks and weeks while I was in hospital.


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## UnXmas

> . I know gluten-free is a first good step.


Only if gluten is a problem, and for most people it's not. I would think it's better to get tested (in this case for coeliac) before cutting things out, unless the connection between food and symptoms is very obvious. A long time ago I cut out gluten (and various other things) and it didn't help in any way, and restricting your diet can make it harder to gain weight.


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## JeffBee

UnXmas said:


> I don't think size of bowel movements is relavent. Bowel movements can vary in volume depending on their water content and the amount of fibre you're eating more than on the overall amount of food you consume or calorie intake.
> 
> I eat loads more than people with anorexia too - I've had a whole team of experts completely unable to explain why, while they monitored my food intake for weeks and weeks while I was in hospital.


This is why groups like this are so important.  Comparing and learning from personal successes and failures helps to get answers to many of our frustrating health issues.  The insights learned here along with our own personal experience are so helpful.  We have to remember that even a "team of experts" do not always know the answers.


----------



## JeffBee

Does gluten play an important nutritional role in the diets of people who are not gluten intolerant?


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## Basmah

Usually people who are not gluten intolerant (or who might be, and don't know it), give up gluten to motivate themselves into eating whole foods - that's probably the only time when it becomes an important role in regards to nutrition. Part of the problem with people thinking it's a "fad" is because many people try to substitute their food with gf options (i.e. gluten free bread, cookies etc). If you are making attempts to heal your gut, stay away from those substitutions at first.


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## JeffBee

Basmah said:


> Usually people who are not gluten intolerant (or who might be, and don't know it), give up gluten to motivate themselves into eating whole foods - that's probably the only time when it becomes an important role in regards to nutrition. Part of the problem with people thinking it's a "fad" is because many people try to substitute their food with gf options (i.e. gluten free bread, cookies etc). If you are making attempts to heal your gut, stay away from those substitutions at first.


We should look at diet restrictions as an opportunity to try new whole foods.  You are correct, there are many people that search out recreations of their favorite foods (cakes, cookies, candy, soda) without the damaging ingredients like gluten or sugar.  Then we find out that the replacement chemicals are much worse for us (like artificial sweeteners). This gluten intolerance trend still has me wondering about the usefulness of this ingredient for any of us.


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## UnXmas

JeffBee - I'm sorry, I realised my post basically just dismissed your idea of cutting out gluten. I had a horrible time in the past where various nutirionists and alternative therapy practitioners made me believe I'd get better if I did what they said and cut out all sorts of things from my diet - gluten was one of their favourite things to ban. I ended up confused and feeling like a failure when my health just got worse (and my weight dropped) and I had driven family and friends mad by excluding myself from meals and making my mum buy all different foods and pay for useless food intolerance tests and alternative therapy appointments (I was a teenager at the time).

I would still advise people to be careful about cutting out gluten. As gluten is in so many foods, avoiding it could make gaining weight harder if you haven't found good substitutes. Getting a proper test for coeliac is also a good place to start if you suspect your symptoms are affected by gluten. From what I've read in the media and elsewhere, there is some confusion about at the moment over whether people without coeliac disease can have some other kind of sensitivity to gluten, or whether gluten is just generally unhealthy for everyone. Personally, I think that last possibility is unlikely, I think gluten is fine for most people. I do think it's possible that some people with Crohn's or other digestive disorders could have difficulties digesting gluten; most of us do have trigger foods or find we can improve our symptoms by adjusting our diet. But if someone really needs to gain weight, I don't think it's a great idea to start cutting out something like gluten which would require cutting out so many common foods. The exception to this would be if they suspected the food was so bad for them that eating it results in major symptoms or malabsorption and is actually hindering weight gain. But if someone does suspect this, I think that's serious enough to warrant consulting a doctor. (I've done this - the problem for me was too much fibre, and doctors recognised the need for a low fibre diet. I also found out that my digestive system just couldn't handle NG feed, which my doctors stopped as it was clear the NG was making things worse and not helping me gain weight at all.)

Also, you may find it harder than you think to identify foods that cause you problems. When I've tried various exclusion diets, I found I often saw patterns that simply weren't there. Often our symptoms are not the result of anything we've eaten or otherwise done "wrong" in our lifestyle - sometimes we are just ill, for reasons we can't identify and which we can't control.


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## JeffBee

No apology necessary UnXmas,
During my many years with Crohn's (40+) I have talked to lots of docs, lots of nutritionists, lots of alternative practitioners.  I have tried many therapies from meds to accupuncture to red light therapy.  When I walk into a new doctors office I remind them that I am a professional, a professional patient.  I will listen to them, but they better listen to me and my vast history of experiences.  I have a short fuse when it comes to a young practitioner who wants to give me a restrictive diet or dozens of tests.  Makes me feel like a Guinee Pig.  If I went totally vegan or on the Gerson Therapy diet I would disappear (weight-wise).  I have never been a big meat eater but not against animal protein.  It has helped to hear about people with IBD on gluten-free diets.


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## empressentrails

I struggle with weight gain, I know I need to gain weight but I don't like the way fat deposits on my body (all in my abdomen), making my clothes not fit right.  So now, I am working on weight gain along with doing yoga to hopefully help my body stay flexible and in shape with the added weight.  I am a vegetarian and I do try to stay away from a lot of gluten.  For me, it is only the refined, bleached flour that I have problems with, if I cook with unbleached flour, it is fine.  I also try to incorporate other gains just because I believe a variety of food sources will give my body access to more chemicals/minerals it needs. Avocados on crackers is delicous and high in calories.  I also use a lot of olive oil and sesame oil in cooking.  Sesame sticks are a high calorie snack that don't upset my stomach.


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## UnXmas

JeffBee said:


> This is why groups like this are so important.  Comparing and learning from personal successes and failures helps to get answers to many of our frustrating health issues.  The insights learned here along with our own personal experience are so helpful.  We have to remember that even a "team of experts" do not always know the answers.


Unfortunately this forum hasn't been able to help me any more than the experts.


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## Gail Jothen

I visited my dr. yesterday;  I have lost more weight.   He agreed that mercaptopurine was upsetting my stomach so I stopped it and my stomach pain is less.   He also said that IBD/crohns WILL prevent the digestive system from absorbing nutrients from food.  And a brochure in his office stated:   "Weight loss--your intestines aren't able to take in nutrients from food, and your symptoms may cause you to lose your appetite."   That's me.  Also he said this disease causes one to be tired all the time, which is also me.   I hope to start Remicade in 2 weeks and I pray it will truly help me as I am having a very difficult time with this "challenge."   I look anorexic but I eat at least 1000 calories a day....boring calories but healthy ones.  I also am buying Peptamen on line.   Has anyone used it?


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## UnXmas

1000 calories a day isn't enough. The average woman needs 2000 calories a day. Your weight loss may well not have anything to do with malabsorption, you're just not taking enough in from lack of appetite (I know how hard that can be). When I was in hospital I was eating 3000 a day and not gaining much - _that_ got my doctors concerned about malabsorption.


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## Gail Jothen

thanks UnXmas.    I know 1000 calories is not enough but I am full after I eat and I have not been hungry for months.  I also think 1000 calories is more than an anorexic eats.   I am of very slight build.   Since I quit the mercaptopurine I have had 2 times of hunger.  And then I had oral surgery last week which means I can eat only soft foods for 3 weeks during which I expect to lose....I made a veggie soup with lots of starch veggies and Udo's oil and I put coconut fat in my almond milk....I am hoping the Remicade and healing from the oral surgery will allow me to start gaining weight.  All sorts of things go haywire with me when I  am losing weight.  So I am trying harder to eat more.    I wonder about refugee camps and how those people survive.....


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## UnXmas

I don't think there is a typical amount someone with anorexia eats is there? But it definetly sounds like your primary issue is with taking enough calories in rather than them going straight through you unabsorbed.

As for refugee camps.... as I said in a couple of posts on this thread, my weight is incredibly low, lower than many people with anorexia I would imagine. And yet I survived emergency surgery at this weight. But in famines many people do of course die, or have severe health problems.

Were you given any dietary advice following your surgery beyond being told soft food only? Have you tried Ensure or other liquid food supplements? They also do powder supplements that you can mix into soups and things.


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## Gail Jothen

UnXmas,  I just imagine anorexias eat very little.  Right now I am eating a BIG bowl of starch veggie soup.  I had 5 eggs for breakfast.  After the oral surgery, the instructions said no dairy, which I don't do anyway.   Ensure bothers me.  Peptamen is a liquid food supplement, on back order for me.   I also use powdered rice protein and powdered VEGA, but neither have many calories.  The food world is so concerned about those who are dieting to lose weight we who want to gain are quite limited in choice.    Yes, refugees camps from war are not famines.  I don't know what the mortality rate is....


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## UnXmas

Why no dairy after oral surgery?

I realise refugee camps aren't famines, but in any kind of food shortage it seems some survive. Though in our society, when you hear overweight people saying they hardly eat anything and they still just don't lose weight, the fact that you don't find any overweight people in famine situations shows they can't be right when they say they don't eat much - _everyone_ loses weight when they don't eat too much.

I'm not sure it's true that high calorie options are hard to find in our society - there's plenty of junk food around, that's a big reason why so many are overweight! It is very isolating for those of us who are underweight though, as all the messages conveyed by the media and diet industries assume everyone is either overweight or struggling not to become overweight.

But there are prescribed supplements available to help with weight gain, and there are foods and drinks high in calories, and not just "junk". Nuts (smooth peanut butter if nuts are too high to digest), seeds, olive oil, cheese, butter, milk (obviously these last ones are only if you can have dairy)- these are all high calorie foods that you can easily add into most meals. And a moderate amount of junk is going to be healthier than remaining very underweight, and easy to come by despite how many people are trying to lose weight. 

Soup doesn't sound like the kind of food that would help raise your calorie intake. Low calorie foods can of course be included in a diet that's enabling weight gain, but if your calorie intake really is 1000 a day at the moment, I would think you need to prioritise increasing that when deciding what to eat. And that many eggs is not something many people with appetite problems would consider having. Does it not make you very full to eat that much?


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## JustThatGirl

Hi, guys.

I was referred here by UnXmas, so thanks!! 

I've skimmed through all the comments. I've gotten to about 83/85ish pounds at my lowest. I'm currently hovering around 88. Blehhh. I'm not happy ANYONE is going through this, but it's nice people understand.I always get the comments about "I'll give you some of my weight" or just plain rude comments. I, too, have cried after people make comments.

I am nauseous a lot and I also just lack an appetite. I get full really fast. Lately, I've done research I've been trying to eat full fat yogurt and whole milk ( I haven't noticed an issue with Dairy thus far). I heard adding coconut oil and butter to everything helps. And peanut butter. I guess I just don't really know what I shouldn't be eating. The only thing I know for sure I can't handle is spicy food. And obviously corn and nuts. Everyone says nuts are good but I don't like them, plus they're like a huge no-no, right? 

I also invested in this vanilla weight gain powder. It's disgusting. It doesn't blend. I also got Boost but I don't know. It just doesn't seem to help and it's so expensive to keep up with. I saw a Nutritionist last week. It was a total waste of time. I was told to eat more. K.Thanks.

I'm just getting to this point where I want so badly to gain weight, to look and feel healthy, but I'm exhausted. I'm tired of trying and seeing no changes. I've kind of given up on it mentally but I can't.


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## Basmah

It is such a mentally exhausting thing to deal with, especially when other people make unhelpful comments. JustThatGirl, how are you with making your own shakes (without the powder)? If you can handle them, try making some with healthy fats and protein, like avocados, nut butters, and the yogurt. I know you get full easily, but it's worth to try drinking some of your calories for the time being (not a long term plan).

I bought a scale yesterday, and now I weigh 122 lbs. It's a start! I am just worried because I just had a colonoscopy, and now I am eating simple foods to calm down my stomach. It's been difficult to get that weight back, so I hope I don't lose any of it.


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## UnXmas

> I saw a Nutritionist last week. It was a total waste of time. I was told to eat more. K.Thanks.


That's what the last dietician I saw said. 

Nuts cause symptoms for a lot of people because they're high fibre and difficult to digest. If you have problems with fibre generally, you'll probably have problems with nuts and seeds. Smooth nut butters are ok though.

I don't think protein powders, etc. do much more than drinking milk would do for you if you just want liquid calories.


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## JeffBee

I just started counting calories using "Live Strong Calorie Counter" app.  It's hard to depend on my memory.  I need 2,500 calories to gain a pound per week.  A high speed blender is your friend when your GI track is not doing well.  I drink a smoothie every day and just by adding 2 TBLPS. of coconut oil is 240 calories - now I have to add the rest of the ingredient calories (banana, hemp powder, cocoa powder, fresh ginger, a few ounces of juice with water.  And then I hope I am absorbing it all?  Now onto the rest of the calories.


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## buttER

Hi JustThatGirl
Welcome to the group. 
I find it hard to eat anything when I am nauseous, yet alone put on weight. Do you know what is causing the nausea? Can you do anything to be less nauseous? Have you talked to a doctor about it? There are so many anti nausea medicines out there. It could be a good short term solution.
I understand the exhaustion and frustration. Please don't give up! Slowly but surely, small steps in the right direction, don't expect miracles (well I do but I havent had one yet).


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## buttER

Basmah said:


> I am just worried because I just had a colonoscopy, and now I am eating simple foods to calm down my stomach. It's been difficult to get that weight back, so I hope I don't lose any of it.


Hi Basmah
I had a colonoscopy 10 days ago. I feel like my guts are worse than they were before the colonoscopy, I mean in terms of a flare rather than the discomfort from the procedure. 

That means I have not been eating well or enough since then. It is really frustrating. (I am also on holiday with my family and I haven't been able to do most of the things I would like to do). I hope that the lack of food will help calm things down but it is hardly a good long term plan. 

Plus the doc saw very mild inflammation but I imagine it is already worse than that now, would he believe me? I remember I had the same problem after the last colonoscopy.

Anyway, I hope you have more luck than me!


----------



## hawkeye

I found the calorie counter helped when I was working to gain weight last year after surgery.  It helped me stay away from too much fat and manage the fibre level as I was on a low fibre diet after surgery for 8 weeks.

My surgeon was big on getting enough protein I was drinking protein shakes before and after surgrey (I know this may be a specific case, but it may help).  The only draw back was that they contained carrageenan, which some studies have shown to promote inflammation. 

Smoothies with ice cream may help if you can tolerate dairy, that was one of my treats in the weeks after surgery.
.


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## JustThatGirl

King of Orange said:


> Hi JustThatGirl
> Welcome to the group.
> I find it hard to eat anything when I am nauseous, yet alone put on weight. Do you know what is causing the nausea? Can you do anything to be less nauseous? Have you talked to a doctor about it? There are so many anti nausea medicines out there. It could be a good short term solution.
> I understand the exhaustion and frustration. Please don't give up! Slowly but surely, small steps in the right direction, don't expect miracles (well I do but I havent had one yet).



I'm going to make an appointment with my GP this week to get something for nausea. I really don't know what's causing it. It typically isn't too intense, to be honest. It's just slightly there, but between that and not having an appetite, I have to force myself to even eat. Somedays I do better than others. I think a big portion for me is mind over matter. I just never realized how hard it is to eat with no appetite. I try to eat things I used to love, but they just don't appeal to me anymore. Or like I've mentioned, if I do feel hungry, I'll take a few bites and feel full and lose any appetite I had.


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## JustThatGirl

Basmah said:


> It is such a mentally exhausting thing to deal with, especially when other people make unhelpful comments. JustThatGirl, how are you with making your own shakes (without the powder)? If you can handle them, try making some with healthy fats and protein, like avocados, nut butters, and the yogurt. I know you get full easily, but it's worth to try drinking some of your calories for the time being (not a long term plan).
> 
> I bought a scale yesterday, and now I weigh 122 lbs. It's a start! I am just worried because I just had a colonoscopy, and now I am eating simple foods to calm down my stomach. It's been difficult to get that weight back, so I hope I don't lose any of it.



In the morning, I do the Carnation Chocolate Breakfast mix with whole milk. At night, I usually srink a Vanilla Boost *Plus*. I'm not very fond of the vanilla but that was my only option of the plus that came in bulk. It's cheaper that way. Next time, I'm getting the Equate version because their plus that comes in bulk is available in chocolate. 

I try to make smoothies with this vanilla powder for weight gain. It's called Natures Best. I usually do banana, 3 scoops powder, peanut or cookie butter and milk. I just really don't like smoothies so far. I don't think I have them cold enough for one and I've been told straws are the only way to go. I'm going to invest in some straws and suck it up... literally  ha

I'm hoping it's an acquired taste. I used to hate yogurt but after a couple of years of experimenting and pushing on, I'm a fan!


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## JustThatGirl

Who else is experiencing body image issues? I find it REALLY hard to connect with anyone on this. I know a lot of people have body image issues but in our culture, it's usually they feel overweight. It's like people ridicule me for being so skinny but if I express how I hate it, I'm brushed off like it's no big deal. 

I have never been big or even super curvy. I used to weigh about 105 but I looked healthy and had some curves. I threw all my old jeans out because where I used to fill them out in the butt, hips, and thighs, they just sag now. An old manager "jokingly" told me I lost my butt and I know it's stupid but every time I hear stuff like that I want to crawl in a hole. I hate being 25 and having the body of a 12 year old. I mean, I HATE it.


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## buttER

JustThatGirl said:


> Who else is experiencing body image issues? I find it REALLY hard to connect with anyone on this. I know a lot of people have body image issues but in our culture, it's usually they feel overweight. It's like people ridicule me for being so skinny but if I express how I hate it, I'm brushed off like it's no big deal.
> 
> I have never been big or even super curvy. I used to weigh about 105 but I looked healthy and had some curves. I threw all my old jeans out because where I used to fill them out in the butt, hips, and thighs, they just sag now. An old manager "jokingly" told me I lost my butt and I know it's stupid but every time I hear stuff like that I want to crawl in a hole. I hate being 25 and having the body of a 12 year old. I mean, I HATE it.


Thats a tough one. You will have to learn to accept how your body is, even if it not how you want it to look. I think that is true for almost everyone. 

I also hated being really really thin (no butt no nothing) and I did get self conscious about it. 

But in general I don't really care how I look. I do have alot of self confidence in that I don't really care what people think about me and I am happy with myself within reason. Who wouldnt want to change a thing or two about themselves?

I think that has always been my attitude. Why beat yourself up over yourself, life can be tough enough anyway.


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## UnXmas

Honestly, I can't say it bothers me. Except the assumption strangers make that I'm anorexic. With people I know, who know I'm not anorexic, I don't care, and I don't mind looking like this.

I understand on one level though. When prednisone made me grow a bit of facial hair, I hated it. People just have different things that ruin their self-image, I think.


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## Basmah

JustThatGirl, I am with you on that one. I have been told that I looked anorexic, and that I have a body of a 12 year old boy. For a while it didn't bother me, but lately it's been pissing me off because I am trying to hard to be healthy and finally taking control of my Crohn's. It's working so well, yet people don't understand it. It came to a point where when I was working, I went into an office by myself, and just bursted into tears.

 Also, it made me realize that some people just have no tact (even when they say things with the best of intentions) - I mean why is it okay to tell someone how skinny they are, and not someone else how fat they are? I woud personally never tell someone they'e fat because (1) Chances are they know that, (2)I honestly don't  know what they're going through, and (3) I am not going to actively do anything to help them - unless if they want me to. The best thing you can do is say, "I appreciate your concern, and I am doing my best to take care of it. If I want any advice, I will ask for it." and then move on.


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## JustThatGirl

That's true. I know I do need to work on self confidence and accepting my body image no matter how it is. It's just hard for me, to be honest. 


Has anyone been on antidepressants for an appetite stimulant? My GP gave me Remeron to increase my appetite and for anxiety. It did seem to make me hungry but made my legs so restless I couldn't sleep. So I quit taking it.


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## cantthinkstr8t

So, I went to work today and was fired....they told me among the many reasons one was because I was too thin.


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## JustThatGirl

cantthinkstr8t said:


> So, I went to work today and was fired....they told me among the many reasons one was because I was too thin.


First off, I'm so sorry.

Secondly, I'm pretty sure it's illegal to fire someone because they're "too thin"! Wow. I am so sorry.


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## Basmah

Oh no I am sorry to hear that! Pretty sure they can't fire you for being too thin, what the heck?


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## cantthinkstr8t

JustThatGirl said:


> First off, I'm so sorry.
> 
> Secondly, I'm pretty sure it's illegal to fire someone because they're "too thin"! Wow. I am so sorry.


It was the main reason they gave but there were others. I look weak and frail. I guess some regular customers commented on it.


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## Basmah

I have to be strong and energetic enough for the kids that I work with, but they have not fired me at my worst. Job hunting is hard enough without all the medical bills you have to go through. I hope you find something better soon!


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## UnXmas

cantthinkstr8t said:


> It was the main reason they gave but there were others. I look weak and frail. I guess some regular customers commented on it.


If you don't mind me asking, how much do you weigh, and how tall are you, and what is your job? If I was well enough to be working (which I'm not, but my weight is not the reason for that) I think I'd understand that my weight would make me unemployable for many jobs, because it's not possible for anyone to weigh as little as I do and be able to do anything involving physical activity. (Not just very strenuous activity, but even just being on my feet a lot.)

But I'm an extreme case an I doubt that you're as underweight as I am. Are they firing you because of your image rather than because they think it's not safe for you to work due to your weight? Even if they do have safety concerns, surely they should at least have discussed it with you first? Surely the right thing to do would be to ask you to provide a letter from your doctor confirming your ability to work? Or at least asked you to take some time off with the promise that you'll have your job back if/when your health improves? There just seem to be so many better ways of handling things. I'm very sorry. But at least you'll no longer be working for such heartless people.


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## cantthinkstr8t

UnXmas said:


> If you don't mind me asking, how much do you weigh, and how tall are you, and what is your job? If I was well enough to be working (which I'm not, but my weight is not the reason for that) I think I'd understand that my weight would make me unemployable for many jobs, because it's not possible for anyone to weigh as little as I do and be able to do anything involving physical activity. (Not just very strenuous activity, but even just being on my feet a lot.)
> 
> But I'm an extreme case an I doubt that you're as underweight as I am. Are they firing you because of your image rather than because they think it's not safe for you to work due to your weight? Even if they do have safety concerns, surely they should at least have discussed it with you first? Surely the right thing to do would be to ask you to provide a letter from your doctor confirming your ability to work? Or at least asked you to take some time off with the promise that you'll have your job back if/when your health improves? There just seem to be so many better ways of handling things. I'm very sorry. But at least you'll no longer be working for such heartless people.


I am 5'8 and about 115.  I work an embroidery shop and there are boxes, but I have always lifted them and still do.  I was about 20 lbs heavier when I started working there.


I have Drs notes staying that I can work.  He may not want me to work but he still writes my notes.  I think the worst part is they were supposed to be my friends.  They always talked about how we were family-friendly this is not how family treats each other.  

On a different note, I am eating everything in sight(that I am allowed to) and am back to losing more weight.  I am down to 110 in less than 3 days.


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## UnXmas

Your bmi is only just under the minimum healthy norm. I can't see why they'd have a problem.


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## buttER

JustThatGirl said:


> That's true. I know I do need to work on self confidence and accepting my body image no matter how it is. It's just hard for me, to be honest.


Did you see the doc about anti-nausea meds or something else to stimulate appetite? 

I was just thinking, it's just my opinion, it would be great if you can be happy with the way you are, because that would make you a good role model for your daughter to be self confindant too.


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## buttER

cantthinkstr8t

That is terrible for you, I am so sorry. 
Does that put you under alot of pressure financially now?
I am hoping that if you do not have to go to work then you can concentrate more on relaxing and feeling better.


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## buttER

I think I might have to weigh myself to see how much I have lost since the colonoscopy. I have a nasty feeling it has knocked more that 2 kgs off. That was 6 months work......


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## InstantCoffee

Just had to cut honey out, I'm down to milk, pomegranate and carrot juice and oats for carbs. 

Luckily this leaves oat-fried chicken on the table. 
http://i.imgur.com/8btjrNt.jpg 
Old picture, wrapped in bacon.


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## kikig

I have stopped going near the scales for the moment - thankfully I don't own a set so thats pretty easy 

My jeans are a little roomier than they were, but I'm not going to stress about it right now. 
I feel more robust, and I'm up to 140g of protein a day, as well as whatever I eat which consists of alot of cottage cheese (low fat), fat free greek yoghurt with honey and cinnamon (massive amts of protein in the yoghurt) and tomato & fennel bread. 

I had hoped to be nearer 50kgs at this point(53 is my real target), but looks like 46kgs is sticking to me right now.

My gut instinct says I haven't been on the protein drinks long enough for my body to start building reserves of any kind, so slow and steady is all I can do.


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## UnXmas

InstantCoffee said:


> Just had to cut honey out, I'm down to milk, pomegranate and carrot juice and oats for carbs.
> 
> Luckily this leaves oat-fried chicken on the table.
> http://i.imgur.com/8btjrNt.jpg
> Old picture, wrapped in bacon.


Why did you have to cut honey out?


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## UnXmas

kikig said:


> My gut instinct says I haven't been on the protein drinks long enough for my body to start building reserves of any kind, so slow and steady is all I can do.


Slow and steady should be easier to maintain. 



> I feel more robust, and I'm up to 140g of protein a day, as well as whatever I eat which consists of alot of cottage cheese (low fat), fat free greek yoghurt with honey and cinnamon (massive amts of protein in the yoghurt) and tomato & fennel bread.


Wouldn't it help more to eat full fat yoghurt and a high fat cheese? I'm not criticising, I'm genuinely asking. When I choose lower fat versions of foods it's because the higher fat ones are too rich and fill me up too much, but if I ate too many low calorie foods the amount of food I'd need to eat would be too filling. Do you eat fat free yoghurt for a different reason?

I find there's much more difference in satiety levels between high fat and low fat than there is between high sugar and low sugar. E.g. I find high fat milkshake much more filling than a low fat one, but I don't notice a difference between Diet Coke and ordinary, full sugar Coke. (Btw, there was an article linked to in another thread on this forum which claimed diet fizzy drinks make people gain weight. I know I've managed to lose weight well enough while drinking diet drinks. I much prefer the taste of Diet Coke, but I switched to drinking full sugar Coke because the Diet certainly wasn't helping me gain!)


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## kikig

@UnXmas - its a fair question.one of my main problems is malabsorption due to intestinal lymphoedema. I also have lymphoedema externally too. 

Lymphoedema itself is due to defective or absent lymphatic vessels under the skin. As the system is a transport system, one of the things it transports is long chain fat which is broken down. High/normal fat foods generally contain large amts of long chain fats.

So I have to eat low fat foods to reduce the need for my broken lymphatic system to be involved - short and medium chain fats are not transported by lymphatics.

If I eat normal fat foods, the lymphatics in my intestines swell, thereby reducing transport and absorption abilities further. Its a game I won't win, so I have to be picky.

I've been on this lowfat/high protein diet since I was 4 years old so its normal. My brain has been programmed to disregard foods I know are high fat. You also get used to being slightly hungry all the time


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## UnXmas

Thanks for explaining, kikig. It's certainly a good reason for avoiding fat and I imagine it must make gaining weight very difficult. Has it always caused you weight problems? Is that why you're underweight now, or is it because of IBD? Sorry for all the personal questions, feel free not to answer if you don't want to, I'm just interested as I've not heard of lymphoedema before.


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## UnXmas

I found this page that's full of weight-gain tips, it's aimed at people with cancer, but applies to anyone trying to gain:

http://kelliesfoodtoglow.com/nutrition-and-cancer/help-with-gaining-weight/


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## kikig

UnXmas said:


> Thanks for explaining, kikig. It's certainly a good reason for avoiding fat and I imagine it must make gaining weight very difficult. Has it always caused you weight problems? Is that why you're underweight now, or is it because of IBD? Sorry for all the personal questions, feel free not to answer if you don't want to, I'm just interested as I've not heard of lymphoedema before.


Pretty much always caused issues, only I didn't realise it as a child really. I was always smaller and skinner than everyone else. Then again, no one really noticed as I had more noticeable lymphoedema.

I am underweight now due to IBD - symtoms had been on an even keel for quite a while that I didn't notice things slipping. I basically had a year of diarrhea & bloating - during which my general doctor refused to refer me to a GI. Eventually all hell broke loose and I found myself a proper GI.

Lymphoedema has been hitting the headlines recently on your side of the water as Kathy Bates has been doing alot of promo for it, to raise awareness. Her lymphodema is as after effect of breast cancer I believe - there are two forms generally - primary and secondary. Hers is secondary, mine is primary. I've always had it, and I found treatment on my own initiative, which is a life long thing I have to do. But it means that my hands are primarily the only obvious sign remaining. 
Its everywhere really, so its a constant watch to keep it all manageable. Then IBD on top - I am a lucky girl :ylol2:

The lymphoedema was prob caused by my underlying IBD, and my severe immune issues also are a symptom of IBD. 

I bought the wrong flavour protein drink at the weekend, so now I am stuck with 2kgs of strawberry flavoured protein. Strawberry flavour my butt, this is why I no longer eat the actual fruit :ycool:


----------



## InstantCoffee

I've cut almost all carbs except milk and I'm drinking POM + coconut juice with water. 
I'm trying to transition into a fat-based diet with some protein. 

I've been reading about MAP and AIEC and they say nitrates from a high protein diet are bad for it, I'm trying to find the thread I read it in. Your body produces certain things that help eliminate cytokines, it's boosted by vitamin D, so Vit D is really good, I've been supplementing it and getting more sunlight.

I also read fasting helps. I'm wondering if it needs to be a full on fast or drawn out calorie restriction works, because I'm considering an IF diet where you eat all your calories within a 6 hour window and the rest of the day is a full fast, but if I could get a similar result with just restricted calorie intake, say 20-80% or so it would be easier. 

I've been drinking hot milk with coconut oil for the lauric acid and vit D, then having lots of cheeses with my meats. Experimenting with vegetables, mushrooms and kayle are safe so far. 

Weight hasn't budged but my BMs are consistently solid, energy levels are up, no discomfort, feeling unreasonably cold or shaky or anxious. 

I'm taking lauric acid, cat's claw and a multi. 

Despite my progress I had to cut honey and I had a small amount of sugar in my coffee last friday that caused an urgent bathroom trip. Simple sugars have never triggered me like they do right now. 

My skin manifestations seem to be reducing. I still break out on my back and neck, I'm not sure if it's related but I've been treating it with a concoction of topical treatments including tea tree oil, head & shoulder's, aloe gel, Hibiclens, and coocnut oil in case it's surface manifestations of map bacteria.

Here it is http://www.crohnsforum.com/showthread.php?t=52151


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## UnXmas

Fasting is counterproductive if you're trying to gain weight.


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## InstantCoffee

UnXmas said:


> Fasting is counterproductive if you're trying to gain weight.


Not if it combats the underlying cause of weight loss - inflammation caused by harmful bacterial overgrowth.

Also Intermittent Fasting is neither pro nor counter productive, it only matters how many calories you consume during your window of intake.


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## Basmah

Mainly  the purpose of fasting is to let your body rest and get rid of bad toxins in the body. It's like how Muslims during Ramadan in the summertime generally feel rejuvenated because all of the sugar and processed stuff is all out of their system, but they continue to eat meat, rice, and other whole foods when they aren't fasting. People may lose or maintain weight depending on their carb and protein intake, but the majority of them gain their weight back once the month is over.

Ramadan in the winter time is a completely different story lol. People definitely gain weight, period.


----------



## Basmah

I just want to share a little bit of my experience. I am still on the same restrictions, except that I have added in zucchini, summer squash, eggplant, and today some avocado without any problems. I also ate sweet potato once, but I consider it to be a treat.

Anyway, I was at 118 for months because I was detoxing that whole time. I have been gaining weight the last month, and now I weigh about 124. My bms are more solid and consistent, and I am hoping that with my training for Team Challenge that most of the weight I gain will turn into muscle.


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## UnXmas

InstantCoffee said:


> Not if it combats the underlying cause of weight loss - inflammation caused by harmful bacterial overgrowth.
> 
> Also Intermittent Fasting is neither pro nor counter productive, it only matters how many calories you consume during your window of intake.


Intermittent fasting would make it harder to gain as you'd have to eat a lot more during the times you eat. If someone has trouble eating enough already, then they're not going to be able to eat extra. If you _can_ eat a lot extra, then you wouldn't be having any trouble gaining weight.

And I'm not sure I understand how fasting cures inflammation/bacteria overgrowth. Do you have links to papers/studies/whatever that show how that works? I'm genuinely asking - not saying you're wrong. When my doctors thought I had SIBO they gave me a load of antibiotics, and would never have dreamed of suggesting I fast. My surgeons had me on bowel rest while my intestine healed from surgery - is that the kind of thing you mean? (I had TPN during that time.) Also how do you know the underlying cause of your weight loss?


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## UnXmas

I've reached a mile*stone*: I've worked out that I've put on a stone (6kg or 14lbs) since my hospital admission at the start of last Summer. And during that time my intestine perforated, which for obvious reasons stalled things a bit, though eating has been a lot easier since the surgery that fixed the perforation, as the surgeon removed the bad bit of my small intestine, and I got a new stoma which doesn't block like my previous stomas, so I no longer have dietary restrictions because of that. 

Only another three stones or something more to gain and I'd be a normal weight.


----------



## InstantCoffee

UnXmas said:


> Intermittent fasting would make it harder to gain as you'd have to eat a lot more during the times you eat. If someone has trouble eating enough already, then they're not going to be able to eat extra. If you _can_ eat a lot extra, then you wouldn't be having any trouble gaining weight.
> 
> And I'm not sure I understand how fasting cures inflammation/bacteria overgrowth. Do you have links to papers/studies/whatever that show how that works? I'm genuinely asking - not saying you're wrong. When my doctors thought I had SIBO they gave me a load of antibiotics, and would never have dreamed of suggesting I fast. My surgeons had me on bowel rest while my intestine healed from surgery - is that the kind of thing you mean? (I had TPN during that time.) Also how do you know the underlying cause of your weight loss?


I can link you some threads but you can find all I've found searching MAP bacteria and AIEC on this forum and reading the first 2 pages of results. 

If you have trouble with appetite / gaining weight, I'm of the opinion that your diet is not Crohn's friendly and you're going to suffer until it is. 

I'm also of the belief that you can enter remission through controlled diet. I'm not saying cure it, but be 100% symptom free without medications. 

Source:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2877178/

Now the problem is, if you're not eating a Crohn's safe diet, and you're not a-symptomatic, many of the therapeutic foods you need to be eating you won't be able to tolerate.

It's important to draw a line between trigger foods - ones that make Crohn's worse as a product of their chemistry - and sensitivities - foods that your unhealthy digestive system cannot handle in their current state. 

A trigger food would be wheat, a sensitivity would be like fiber, or fat, as high-fat diets are preferable for Crohn's but many struggle with high fat. This is because their digestion isn't working properly due to inflammation and possibly dysbiosis. 

The first thing they'll need to do is go on an ultra clean diet until they can reach remission. This may include fasting. For me chicken eggs and dairy let me reach this, it's hard to say what will work for everyone but generally:

-Low to no carb. No simple sugars at all. 
-Limit fiber
-Limit greasy foods. If eggs are safe, boil or poach them rather than frying

If you're BARELY eating but you feel completely asymptomatic, this is still preferable to eating 2000 calories and being sick, continue this for 1-2 weeks and begin to incorporate more fat in the form of butter, coconut and extra-virgin olive oil. 

I'm digressing a bit on the diet part, I'll give more details on what makes a good CD diet and why if you want, but I'll explain the causality which leads us to the why. 

We have a LOT of evidence to suggest Crohn's symptoms are caused by two bacteria. MAP and AIEC.

I may have misunderstood the exact process but this is roughly how it works: Crohn's is a faulty function of our immune system that allows these bacteria to enter our macrophages (the immune cells that normally consume and kill bacteria) and live there while sending out messages requesting a TNF response, so they stimulate an overactive immune response.  A weak immune system leading to an overactive response, this summarizes the symptoms to a T. 

In order to kill the bacteria very special anti-biotics are required, three of them or more at the same time. Each serves a different purpose. 
http://www.redhillbio.com/RHB-104

MAP is a slow-dividing bacteria and most antibiotics attack the bacteria during cell division. Because of this, special antibiotics that can penetrate the protective layer of the cell outside of division are necessary.

It's believed that lauric acid found in coconut oil can dissolve the lipid barrier protecting the bacteria allowing us to naturally combat it. 

Consuming large amounts of sugars can quickly breed these harmful bacteria allowing their populations to expand. 
http://www.crohnsforum.com/showthread.php?t=44806

So an ideal Crohn's diet starves the bacteria of food while enabling our body to kill it. 

That's where this post comes in, but the user didn't post much citation. 
http://www.crohnsforum.com/showthread.php?t=52151

The idea is to promote peptides which help fight the bacteria, and to induce autophagy via fasting 

User wildbill_52280 posted this:


> its not just map thats a problem,there may be a few bacteria that can survive within a cell and persist due to autophagy defects in genes, or even without defects.
> 
> stimulating autophagy may eliminate them, i have used resveratrol to do this and i believe it was successfull. did not cause a remission tho.
> 
> 
> Fasting or caloric restriction is your best bet for getting a remission, it also stimulates the process of autophagy. autophagy is the process which the body uses to get rid of intracellular pathogens. but this isnt how a Caloric restriction would cause a remission, caloric restriction dramatically lowers inflammation too, and its this that may cause a remission because the inflammation which produces nitrate as a byproduct is what allows the raise in enerobacteria in crohns, as this physiological change fertilizes their growth. by dramatically lowering inflammation, these bacteria will disappear. http://medicalxpress.com/news/2013-0...-bacteria.html


----------



## empressentrails

Instant coffee, thanks for the info!  I agree with you on almost everything, but disagree on your description of a perfect Crohn's diet.  I don't agree with eliminating carbs at all.  I know everyone is different, and I certainly don't support eating bleached white flour, but I believe that carbohydrates are and always will be the primary energy source for the human body.  Grains like, rice, oats, amaranth, rye, barley, (processed to have little fiber, but not bleached) are easy to digest and packed with energy for your brain and muscles!  I also believe that it is important to eliminate meat, beans well cooked or pureed are a much better source of protein, easier to digest, and free from the bacteria that meat has.  To gain weight, eating fat is the best way!  It's a simple equation, fat has 9 calories per gram, compared to only 4 for a gram of carbohydrate or protein, the body is also very good at converting fat we eat into fat for storage.  I just suggest getting fat from plant sources mostly, such as olives, avocados, coconuts, nuts, and fatty seeds.  Fasting is good for so many things, I'm considering it to try to reach remission.  But as far as gaining weight, I'd say fasting isn't going to help much.  I find I actually gain weight when I work out because I balance out my system and build a lot of muscle, working out also increases your appetite.


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## UnXmas

Thanks for the info. But even if it's true (I haven't read the links you provided yet), I don't think I could apply it in reality. I have more things wrong with my digestive system than Crohn's, and at the weight I am, I don't know I'd have the energy reserves to fast or to follow a limited calorie diet for very long at all. Also, I've been on various excluion diets in the past and never felt better while on any of them. And shouldn't I have got better while on bowel rest? I healed from the surgery, but nothing else changed. I went a week or so on just TPN and water, then another week eating very little, and I definitely lost weight, (and I've fasted at other times for various reasons with the same results) so it still seems completely obvious to me that fasting and restricting calories conflicts with weight gain. If fasting for a day or two resulted in a significantly improved digestive system that meant it was much easier to gain weight from then on, then it would be worth fasting, but it doesn't.



> If you have trouble with appetite / gaining weight, I'm of the opinion that your diet is not Crohn's friendly and you're going to suffer until it is.


I have gastroparesis which means I have no appetite regardless of other symptoms, and since there's a gastroparesis support group on this forum, it could be quite common amoung those with Crohn's. Do you think that can be fixed with diet changes?

I'm sorry to nitpick, but if everyone could get their Crohn's under control with diet, we'd all be doing it. It kind of defeats the purpose of a weight gain support group to talk about fasting. It would be dangerous for those of us who are very underweight.


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## UnXmas

I had a quick look at your first link. The diet used there seems different to what you advise as it includes grains and a lot of fibre? Or maybe I've just misunderstood, but either way, fasting is not a good idea if you're underweight. Maybe you could start a new thread about it?


----------



## InstantCoffee

UnXmas said:


> Thanks for the info. But even if it's true (I haven't read the links you provided yet), I don't think I could apply it in reality. I have more things wrong with my digestive system than Crohn's, and at the weight I am, I don't know I'd have the energy reserves to fast or to follow a limited calorie diet for very long at all. Also, I've been on various excluion diets in the past and never felt better while on any of them. And shouldn't I have got better while on bowel rest? I healed from the surgery, but nothing else changed. I went a week or so on just TPN and water, then another week eating very little, and I definitely lost weight, (and I've fasted at other times for various reasons with the same results) so it still seems completely obvious to me that fasting and restricting calories conflicts with weight gain. If fasting for a day or two resulted in a significantly improved digestive system that meant it was much easier to gain weight from then on, then it would be worth fasting, but it doesn't.
> 
> 
> 
> I have gastroparesis which means I have no appetite regardless of other symptoms, and since there's a gastroparesis support group on this forum, it could be quite common amoung those with Crohn's. Do you think that can be fixed with diet changes?
> 
> I'm sorry to nitpick, but if everyone could get their Crohn's under control with diet, we'd all be doing it. It kind of defeats the purpose of a weight gain support group to talk about fasting. It would be dangerous for those of us who arevery underweight.


I believe they told me I had gastroparesis. It was a misdiagnoses though. When I ate a trigger food my stomach wouldn't empty. It would just fill up until I vomited. This continued until I eliminated all trigger foods. My stomach was also so inflamed it almost blocked off my small intestines. 

Have you vomited green fluid recently, or seen green cloudy stuff in your BMs?

This may be different in your case since you said it continued when on a limited diet. 

I want to make it clear fasting isn't something i preach, it's something I just discovered and I'm curious about its effect on autophagy, not so much gut recovery. 

Fasting isn't something I suggest as a long term therapy for weight gain, and it wouldn't be immediately effective. When I used it I was 99 lb.s at 6' tall though. I'm also not suggesting 100% calorie restriction. That's why I'm questioning the advice in the post. I'm also wondering about daily fasting, giving large periods of time each day for your gut to heal, but still providing it with food. At this point though I'm beyond needing it for that purpose, so it's not a huge concern to me. 

I cut out anything but safe foods. All I had was chicken, eggs, and cheeses. I would eat breakfast and lunch, and no dinner or a light dinner of non-solid foods.

With what I know now, I'd suggest supplementing L-glutamine throughout for its healing properties and muscle mass preservation. 

If you have other conditions as a result of long-term crohn's, or non crohn's related though it really makes advice directly targeted at crohn's less effective.

Are you open to trying supplements? 



UnXmas said:


> I had a quick look at your first link. The diet used there seems different to what you advise as it includes grains and a lot of fibre?


Because the diet they suggest only works once you've induced remission - you're healthy enough to digest those foods.

You'll need to actually get to remission first with an even cleaner, lighter diet. Fiber isn't easy on a compromised digestive system. 

It took me weeks of super strict dieting to get there. 

It took me months just to tolerate coconut oil again after my last flare. 

It's really hard for me to suggest a diet because dairy was instrumental for me in getting to that point with enough calories and not overdoing meat.

Also understand the diet in the study was looking at places with low incidence of Crohn's and saying, "Hey, what do they eat that we can try." It doesn't seem to have the actual chemistry of the food in regards to Crohn's in mind. 

That said the carbs are all balanced with high fiber which I understand helps combat their absorption by bad bacteria. It has no simple sugars. It still falls in line.


----------



## UnXmas

UnXmas said:


> I've reached a mile*stone*: I've worked out that I've put on a stone (6kg or 14lbs) since my hospital admission at the start of last Summer. And during that time my intestine perforated, which for obvious reasons stalled things a bit, though eating has been a lot easier since the surgery that fixed the perforation, as the surgeon removed the bad bit of my small intestine, and I got a new stoma which doesn't block like my previous stomas, so I no longer have dietary restrictions because of that.
> 
> Only another three stones or something more to gain and I'd be a normal weight.


I celebrated by having a Bounty Bar /

http://en.m.wikipedia.org/wiki/Bounty_(chocolate_bar)

I've not had one for years, litteraly, because I couldn't risk coconut with my previous stomas. With my new stoma, I've been gradually trying more potentially blockage-causing foods, and decided it was time to try a Bounty Bar. No symptoms of blockage so far. And Bounty Bars are very high in calories, so very good for weight gain.


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## empressentrails

I've never had gastroparesis, except maybe after my surgery (oophorectomy/appendectomy) when I vomited a bucket of green liquid.  My food makes it to my ileum and then gets stuck there.  I assume the weight loss is due to the food sitting in the stomach acid for too long and then not being a viable source of nutrition.  Is there any food that helps the stomach empty properly?  I find when I really take the time to cook my meals, use the best ingredients, etc.  my food passes through my system fine.  I also find if I make my own pancakes for example, they give me substanable energy, because they're loaded with so much more usable calories/complex carbohydrates.  I've been having trouble with granola bars, wich is unfortunate because I've practically lived on them for decades now, unless I make my own and use delicate ingredients.


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## empressentrails

Also, I don't mean to say everyone should give up meat.  My kids and animals eat it, I give them the choice and they choose to eat it.  But, for me, and all my digestive issues, avoiding meat helps me keep things under control.  I feel like if there were more vegetarian food options and restaurants, I could gain weight on a vegetarian diet, but the way it is where I live, it's a real challenge to find vegetarian food.  But to truly gain weight, meat might be the way to go because it is so high fat and calorie.  For me, though, it causes too much irritation.  I think in moderation, it is part of a healthy diet for most people.


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## UnXmas

Instantcoffee - sorry, I think I confused you, I wasn't asking for advice.

empressentrails - when I had a gastric emptying study (the test for gastroparesis) they told me that it's very rare for people to have stomach empying problems with liquids, it's usually just solids. So I'm not sure if there are foods which actually help the stomach empty, but different types of foods and liquids empty at different speeds. There's a medication, domperidone (brand name Motileum) that helps the stomach empty and treats nausea. It helped me a bit for a while but then stopped working for me. I actually never vomit. I just get incredibly full! And I have a lot of reflux.

There are some vegetarian foods that are high calorie: for one thing there are supplements like Ensure and Fortisip. Obviously they're not the same as an enjoyable meal at a restaurent, but as a supplement to the rest of your diet they could help. What about cheese (if you eat dairy?), olive oil, peanut butter? If you can tolerate nuts and seeds they're high calorie, but if granola is causing you problems, they will too. What about cakes and biscuits? (You can cook your own if that helps make them more suitable for you). I think it must be possible to gain weight without meat. I do eat meat but not much - I'll have things like chicken or fish a couple of times a week, but I'm gaining now, and have done in the past, without meat being a major component of my diet. I have a lot of dairy though, I think it would be hard to gain with no meat and no dairy, but if meat gives you problems I'm sure you'll manage without.


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## empressentrails

Dairy is usually ok for me in moderarion.  I do love hard cheeses, but try not to over do it.  Cottage cheese or yogurt is a good source of protein if I am desperate,  but a well cooked meal with lots of veggies and beans is the best.  When I cook, I've always had to chop
 everything very fine, shred, or puree it.  I also like to cook things on slow for a long time to really break down the fiber.  I can eat high fat foods only in moderation or I will get sick and vomit.  It use to only happen once or twice a year, but now it's a very common thing.  If I eat the wrong thing, I will get extremely sick.  Cakes/biscuits/yeast bread/croissants are all fine if I make them myself, cannot do the packaged ones. I have to use natural flours and oils  .  I do like supplements, but most kill my stomach.  Ensure is good, but it is so expensive, I can't afford it.  I find drinking carrot juice is absolutely wonderful for me.  I cannot drink animal milk straight, so I use all different kinds of plant milks, and do my cooking with them, too.  Right now I'm at a decently healthy weight (115), but I know it is only because I am taking 5mg prednisone.  Without it, I know I would be at my usual 94
Lbs. I think 110 (5'4) would be ideal off steroids especially if I exercise and most of my weight is muscle.


----------



## InstantCoffee

empressentrails said:


> I've never had gastroparesis, except maybe after my surgery (oophorectomy/appendectomy) when I vomited a bucket of green liquid.  My food makes it to my ileum and then gets stuck there.  I assume the weight loss is due to the food sitting in the stomach acid for too long and then not being a viable source of nutrition.  Is there any food that helps the stomach empty properly?  I find when I really take the time to cook my meals, use the best ingredients, etc.  my food passes through my system fine.  I also find if I make my own pancakes for example, they give me substanable energy, because they're loaded with so much more usable calories/complex carbohydrates.  I've been having trouble with granola bars, wich is unfortunate because I've practically lived on them for decades now, unless I make my own and use delicate ingredients.


Only trigger foods effect me this way. My system floods with bile and nothing gets digested or absorbed. I don't believe anything helps except avoiding the causative food.

I had an emptying study done too and it took almost 15 minutes to get even a trickle - I believe the barium solution causes a reaction in me. I refuse to get any further studies done where I need to swallow any kind of chemicals. 

You said store bought breads are not safe. Do you use canola oil in your cooking? If not that may be the difference. Canola was one of the major causes of my slow emptying. It's used in almost all off-the-shelf baked goods and so much more and it's terribly unhealthy. 

You can identify lactose-safe cheeses by the carb / sugar content. Lactose is sugar, so less sugar = less lactose.


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## 24601

Yay to Bounty bars, UnXmas! I love them - worth a surgery, right?  -  but likewise have had times where I knew eating one would make me so sick! It's so good to be able to regain foods that you have had to go so long without! 

The Bounty alone is a milestone but 1 stone is wonderful! Well done! I know that's taken persistence but it's obviously paid off 

Btw, InstantCoffee I can understand the though process here


> I'm also wondering about daily fasting, giving large periods of time each day for your gut to heal, but still providing it with food.


But I just don't think giving your gut the majority of the day off would be enough to promote healing. All the studies I've ever seen suggest complete bowel rest is needed for a much longer period - whether through EEN (or less effective usually TPN) or diversion of fecal matter (a stoma). And of course neither EEN or TPN are are effective for everyone and interestingly EEN is better than TPN, which would be the closest equivalent to fasting in any study.

When we fast and feel better I believe it is almost always symptomatic relief that we experience. That was my experience but it is incredibly seductive to feel better through fasting. Naturally though it can lead to significant and dangerous weight loss.

Agree with low lactose cheeses being useful for some though - as a rough guide hard cheeses tend to be low in lactose, soft cheeses higher.


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## empressentrails

I do not use canola oil, I read a long time ago, it was the most genetically modified oils, which blows because an organic version should be healthy and full of monounsaturated fats.  I use strictly olive oil and sesame oil. I do buy store bought bread sometimes, but never eat things like snack cakes.  My biggest trigger foods are salad and cilantro.  Next would be red meat and anything under cooked.  My friends are all cheese snobs so we have cheese and beer parties.  The beer usually makes me sick unless it's a dark porter, but the fancy cheeses are ok in moderation.  I'm not lactose intollerent, my body just gets sick physically and emotionally when I consume a lot of dairy, thinking about how the chickens or cows have suffered.  I think the cause of my flare was extreme stress coupled with a poor diet at the time ( too much caffeine and sugar).


----------



## InstantCoffee

empressentrails said:


> I do not use canola oil, I read a long time ago, it was the most genetically modified oils, which blows because an organic version should be healthy and full of monounsaturated fats.  I use strictly olive oil and sesame oil. I do buy store bought bread sometimes, but never eat things like snack cakes.  My biggest trigger foods are salad and cilantro.  Next would be red meat and anything under cooked.  My friends are all cheese snobs so we have cheese and beer parties.  The beer usually makes me sick unless it's a dark porter, but the fancy cheeses are ok in moderation.  I'm not lactose intollerent, my body just gets sick physically and emotionally when I consume a lot of dairy, thinking about how the chickens or cows have suffered.  I think the cause of my flare was extreme stress coupled with a poor diet at the time ( too much caffeine and sugar).


It might be related to canola then unless you've directly tested it, since you don't use it but most store bought products do.

Canola was originally sold as an industrial lubricant and when it failed there because it wasn't as good as petroleum products they re purposed it into 'food.' 

You say salad, is it anything in particular? 

I'm very lucky in the cheese department. I forgot my lunch for work the other day so I ate a 12 pack of Kraft singles lol. Not something I would advise doing often because of the basic health consequences, Crohn's aside, but I had no reaction to it really.

To those using Ensure, I suggest this thread. 
http://www.crohnsforum.com/showthread.php?t=44806


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## empressentrails

I believe that canola isn't the best choice, but it doesn't cause the instant vomitting reaction some other foods do.  All salad is forbidden for me.  They put lettuce in my taco recently and even though I scraped most of it out, I still got very sick.  I think my issue is that my ileum is so narrow due to inflammation and surgery that foods that are unbroken down like salad, or bulky like meats, just don't fit through, so my body tries to send the food back up.  I think a lot of inflamation may be caused by gmos, I know it's a heated subject, but it just makes sense that's something with genetics that don't occur naturally, would ignite the immune system.  I know almost all canola is gmo, also corn and soy.  I wish I could avoid them, but until they start labeling here, I just have to eat them.


----------



## UnXmas

24601 said:


> Yay to Bounty bars, UnXmas! I love them - worth a surgery, right?  -  but likewise have had times where I knew eating one would make me so sick! It's so good to be able to regain foods that you have had to go so long without!
> 
> The Bounty alone is a milestone but 1 stone is wonderful! Well done! I know that's taken persistence but it's obviously paid off


Thank you! It was yummy! I think you get a new appreciation for foods if you've not been able to have them for a while. The food I want to try next is some kind of high fibre breakfast cereal, like bran or muesli. It's even longer since I've had that, because it would have blocked my previous stomas, but even further back, before I had a stoma, high fibre cereal would cause severe diahrroea, so it's been years and years since I've had it (diarrhoea with a stoma isn't a problem unless it's very severe).



> Btw, InstantCoffee I can understand the though process here
> 
> 
> But I just don't think giving your gut the majority of the day off would be enough to promote healing. All the studies I've ever seen suggest complete bowel rest is needed for a much longer period - whether through EEN (or less effective usually TPN) or diversion of fecal matter (a stoma). And of course neither EEN or TPN are are effective for everyone and interestingly EEN is better than TPN, which would be the closest equivalent to fasting in any study.
> 
> When we fast and feel better I believe it is almost always symptomatic relief that we experience. That was my experience but it is incredibly seductive to feel better through fasting. Naturally though it can lead to significant and dangerous weight loss.


Just to add - these forms of bowel rest - EEN, TPN, stomas - tend to be last resorts for many people. If someone's digestive system really can't tolerate food at all, they need doctors' help, whether underweight or not.

Fasting or eating very little can also cause the stomach to shrink, so as well as directly causing weight loss, it could make it harder to gain the weight back afterwards.


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## InstantCoffee

24601 said:


> Yay to Bounty bars, UnXmas! I love them - worth a surgery, right?  -  but likewise have had times where I knew eating one would make me so sick! It's so good to be able to regain foods that you have had to go so long without!
> 
> The Bounty alone is a milestone but 1 stone is wonderful! Well done! I know that's taken persistence but it's obviously paid off
> 
> Btw, InstantCoffee I can understand the though process here
> 
> 
> But I just don't think giving your gut the majority of the day off would be enough to promote healing. All the studies I've ever seen suggest complete bowel rest is needed for a much longer period - whether through EEN (or less effective usually TPN) or diversion of fecal matter (a stoma). And of course neither EEN or TPN are are effective for everyone and interestingly EEN is better than TPN, which would be the closest equivalent to fasting in any study.
> 
> When we fast and feel better I believe it is almost always symptomatic relief that we experience. That was my experience but it is incredibly seductive to feel better through fasting. Naturally though it can lead to significant and dangerous weight loss.
> 
> Agree with low lactose cheeses being useful for some though - as a rough guide hard cheeses tend to be low in lactose, soft cheeses higher.


Our gut does most of its repairs at night so I was thinking it could be productive to eat solid foods early in the day and taper into a liquid diet at night then supplement L-Glutamine before bed.

I tried some elements of the Japanese diet from the pubmed study today. So far no reaction to tofu, miso or the sticky rice I used. I thought rice was a trigger, so glad to have it back. Miso was gross though.

I also just found Fairlife milk at target I might try, it's extra filtered with lactase and added vitamins. 

I've been buying kombucha soda there by Live brand.


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## UnXmas

I used to take L Glutamine, it didn't make the slightest bit of difference.


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## empressentrails

Reading through this, it's interesting how many underweight people have poor body image.  Before taking steroids, when I was much skinnier, I hated the way I looked.  Even though people would always say I wish I had your figure or I wish I was your size, and I won't lie, I love those compliments, but then when I looked in the mirror what I saw was just so disgusting.  I started cuting my own hair just so I didn't have to look at myself under the bright lights of a studio, and when I tried clothes on at a store I would be in agony over how I looked in the dressing room mirror, even though most girls would love to fit in those small sizes, it's not worth it if you still feel so awful when you see yourself.  Since I got so sick and got on Prednisone and anxiety meds, I've gained weight.  I even ripped through a pair of my skinny jeans when trying to put them on.  My wedding ring doesn't fit anymore and I don't have time to exercise the way I should, but despite it all my confidence has gone way, way up since gaining weight!  I feel like I just look more confident and vibrant, and I feel like people treat me better.  It's weird because being so skinny became such a part of my identity, that now that I'm gaining weight I guess I'm finding other reasons to love myself, and I'm developing my personality and talents, rather than obsessing about my body.  My goal is to get off the prednisone and get this disease under control.  Eating healthy will always be important to me, but loving yourself is also and important part of healing.  I know it's not exactly scientific , but part of me thinks an immune disorder like crohns is essentially your body attacking itself the same way we mentally attack ourselves with low self esteem.  So, in a more metaphysical way, I feel loving yourself might actually help your body stop attacking itself on all levels.  To gain weight, maybe we just need to love ourselves and love life.  Sorry for the ramble.


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## UnXmas

I've never had body image issues from being too thin. I know I look sick but I don't worry about it, the only thing that bothers me about it is that I know many people will assume I'm anorexic. The stereotype of an anorexic is someone obsessed with how they look, neurotic about low calorie food, etc. and that's not me. I have other hang ups about the way I look but being thin isn't one of them.


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## InstantCoffee

Japanese diet didn't work out. Idk what about it. It took most of the day to 'react' to it then I had to throw up at night. No diarrhea, just upper symptoms. 

I used to react quickly to almost anything that triggered me, diarrhea in 30 minutes or less or your money back.

I always wanted to be muscular, I started going on bodybuilding forums to learn conventional knowledge to gain weight and it just made my self image worse. I've felt much better since I left, but I still hate seeing my legs in the mirror, they're so shapeless. I rarely wear shorts. 

I've eaten a lot of unhealthy stuff and taken a lot of supplements to try to gain weight. The other problem is that chronic inflammatory diseases as well as having been in a point of extended near starvation in the past can cause permanent hormonal damage, and muscle growth is very testosterone limited. 

I've taken several natural boosters. Maybe a good thing, I think they helped cure my depression.

Edit: 
Stick rice was safe, I think it was the kombucha tea that triggered me. Probably too much sugar.


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## empressentrails

Man, Japanese and Chinese food sits so well with me (if it is meatless), my husband however gets a stomach ache from it, so we don't eat it very often, Mexican food also does well for me (if it doesn't have cilantro or meat), pretty much anything but your typical American food


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## UnXmas

What kinds of foods do you mean by typical American?


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## empressentrails

Cheeseburgers, steaks, fast food... St.louis where I live is a very meat centric city, I love it here, but some resuraunts you can't find anything without meat, even the vegetables have bacon or lard in them, I had an idea to create healthy meatless versions of all the classic St. Louis foods like black bean toasted ravioli or a vegan gooey butter cake, the ethnic restaurants in my city are great, but unfortunately with my cilantro allergy I even have trouble there, *sigh*


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## UnXmas

Had an official weigh in at doctor's request - unfortunately I don't remember how much I was last time so I don't know if I've gained! But I'm pretty sure I can't have lost much given how much I weigh on my own scales.


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## Gail Jothen

I have IBD;  symptoms are ulcers in my small intestine and lots of pain in my stomach and intestine area.    I have no diarrhea,  but do have constipation sometimes.    I notice many of you have diarrhea and a sign of Crohns is diarrhea.   Anyone else NOT have diarrhea but lots of pain as I do?   I have lost 40 pounds since I got this 5 years ago.  It took 4 years for a GI doctor to diagnose it as IBD.   He said I have the beginnings of Crohns.   Seems a long time for 'beginnings."   I am having a terrible time gaining weight,  but at least I am not losing  (I think).


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## UnXmas

There is a support group for people with Crohn's and constipation: http://www.crohnsforum.com/showthread.php?t=69200

It's much more common to have diarrhoea, but not everyone with Crohn's has it.

Is your weight loss due to lack of appetite, or does pain prevent you from eating enough?


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## InstantCoffee

Gail Jothen said:


> I have IBD;  symptoms are ulcers in my small intestine and lots of pain in my stomach and intestine area.    I have no diarrhea,  but do have constipation sometimes.    I notice many of you have diarrhea and a sign of Crohns is diarrhea.   Anyone else NOT have diarrhea but lots of pain as I do?   I have lost 40 pounds since I got this 5 years ago.  It took 4 years for a GI doctor to diagnose it as IBD.   He said I have the beginnings of Crohns.   Seems a long time for 'beginnings."   I am having a terrible time gaining weight,  but at least I am not losing  (I think).


My diarrhea is triggered by sugars, when I stopped eating processed and refined carbohydrates I got constipation instead. 

I drink a lot of fluids and take about 2 fistfuls of strawberries plus some other fiber sources daily and it doesn't help. 

I'm sure I can fix it by adjusting my diet, probably reducing my dairy intake. 

Try increasing your fluids, if that doesn't work increase your fiber.

Are you consuming any / a lot of dairy?

For many coffee has a laxative effect if you can tolerate it, and coconut juice / oil (also if you can tolerate is),  also aloe vera juice but I hesitate to suggest it as a go-to constipation cure, there's the possibility of complications with it, it's an option though in a pinch if you haven't gone in a few days.


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## UnXmas

> For many coffee has a laxative effect if you can tolerate it, and coconut juice / oil (also if you can tolerate is), also aloe vera juice but I hesitate to suggest it as a go-to constipation cure, there's the possibility of complications with it, it's an option though in a pinch if you haven't gone in a few days.


A few days without a bowel movement is normal, you only need to start thinking about laxatives when it's been about a week or more.


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## Gail Jothen

UnXmas:  thanks for the info that not everyone with Crohns has diarrhea... and for the web site.  I will go there.   My weight loss is both no appetite and terrible pain.  I went 4 years before being diagnosed and lost 37 pounds then.  The doctor said i had reflux.  I don't know why I did not think, "why do I believe these doctors?"
Instant Coffee:   I hardly have ANY sugar,  Never thought that might be affecting my bowels.
I drink about 3 glasses of LF milk daily, I love it.   No other dairy,  it causes pain.   I do need to drink more water.   Coffee bothers me;  anything with caffeine bothers me.  I am trying to use more coconut oil for the fat which I need.   Thanks!


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## Helene

Help!!! I just have to gain some weight. I just joined this forum and I was thrilled to see all these threads. I have tried so many different diets... paleo, SCD, Makers diet and others just to name a few. I am 5'3" and weigh about 86lbs. I have lost 8 lbs in a little over a week. It's very frustrating and exhausting. I am currently taking Cimzia (for 4 months) I have not noticed much of a difference. Remicade, Humira and several "oral" therapy drugs have not worked well either. I was diagnosed with Crohn's 24 years ago, had 2 section of my large bowel removed and I am currently having a flare. The only time I've ever really felt good was during my 2 pregnancies. My doctor prescribed Hyoscyamine Sulf....has this worked for anyone? I'm scared that I'm just going to keep dropping weight since I am going to the bathroom at least 12-15 times a day. Any suggestions will be greatly appreciated. I fear going into the hospital and not being able to take care of my little ones! Thank you.


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## Gail Jothen

Helene:   you are underweight,  I am really sorry.  I am underweight,   5'3', weigh 95 pounds and want to gain weight.   If the Cimzia is not working,  your doctor needs to try something else for you.   Have you ever been on a steroid?   

Also,  have you tried FODMAP diet?   It is for IBS but is also good for Crohns.     You can search for it on the web,  also look on Facebook for Patsy Catsos,  who wrote a book on FODMAP called IBS: Free at Last.  I know it says IBS and you don't have it, but the diet really helps me.   But you need to return to your dr and if he can't help you try someone else.   Maybe even go to Mayo Clinic.   They are very persistent with any disease there.   Hyoscyamine did not help me at all.   I think it is suppose to stop bowel contractions,  does not help with intestinal ulcers.   Hug and prayer for you.....


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## Helene

Gail,
Thank you for you response and your prayers. Yes, i have been on lots of different steroids. I need to do something, I will definitely check out the FOD MAP diet, thank you. My husband is pushing me to go to the Mayo Clinic as well. It stresses him out to see me like this. I'm really thinking about a fecal transplant...what the heck couldn't have any worse side effects than some of the other "therapies" I've done/taken. Thank you again for the diet idea and the support. Prayers of health to you!


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## UnXmas

Helene - have your doctors ever talked to you about an NG tube or any other tube feeding? They're not ideal, I couldn't get on with them at all, but apparently they work well for some.


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## Tubes

The lowest my weight ever got down to was 60lbs. At age 12.In 2002 at  age 20 with the help of steroids I got up to 235lbs.,in 2004 I had a total Colectomy and since then I've average between 115 to 120lbs. I've had 7 total surgeries since then  and lot of damage to my stomach in late 2010 I found a decent diet and got up to 136lbs 2 weeks later I had a massive blockage they wanted to avoid surgery at all costs and I spent almost 6 weeks in the hospital waiting to pass the blockage got pneumonia and got down to 98lbs,it's been a struggle to gain weight since then last summer got sick again got down to 114lbs but about 3 weeks ago I went to the GI and was up to 143lbs which it was the 1st time since 2004 I've weighed that much so I got that going for me.


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## InstantCoffee

I don't understand my body's interaction with this protein shake at all. 
If my stomach is out of whack and I drink some, sometimes it fixes the diarrhea and I feel much better.

If I continue to have it regularly for days / weeks / months eventually even a little bit triggers diarrhea .


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## Basmah

InstantCoffee, are you sure it's the protein shake that's giving you diarrhea?

Helene, the Mayo Clinic is wonderful. I would definitely encourage you to go there. I suggest that you first try out some elimination protocol, like FODMAP, SCD, or AIP to help calm your body down before you can add on more food.

I started adding more fruits and other veggies into my diet, and I have gained quite a bit of weight over the last 2 months. I am happy about it, but it's at an alarming rate that I decided to cut back on carbs for a little bit. Unfortunately, I have been feeling crappy the last few days due to eating too many dried apples and looking for another job. :/


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## UnXmas

It's good to see someone on this thread who's successfully gaining, Basmah.


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## InstantCoffee

Basmah said:


> InstantCoffee, are you sure it's the protein shake that's giving you diarrhea?


Positive. 
It contains maltodextrin, which is bad, but it's also loaded with vitamins, minerals and some herbal stuff so I wonder if those have a beneficial effect, I've seen it both stop diarrhea and cause it, it's weird. 

It contains most daily vitamins, calcium, phosphorous, iodine, magneisum, zinc, selenium, copper, manganese, chromium, molybdenum, potassium.

The for herbals it has tongkat ali, eleuthro root, schizandra chinesis, yohimbe bark, colostrum, MCTs, boron and tribulus. 

I know colostrum is supposed to be great for crohn's and tribulus has had great mood-altering effects on me in the past. The others I don't know much about off the top of my head, I've looked them all up at one point or another and most are body building supplements with limited evidence to their efficacy. 

It also has choline, inositol and PABA which I know nothing about. 

It's made with glucose polymers and glucose may aid in fructose absorption which is great if you have fructose malabsorbption or intolerance.

It's weird though, we know based on research maltodextrin feeds bad bacteria and leads to dysbiosis but I read a blog post by a woman saying she used maltodextrin to promote growth of healthy probiotics for her crohn's treatment. Maybe it's a double edged sword? 

Probiotics have to eat too.


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## UnXmas

How long have you been having it for?


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## InstantCoffee

On and off for 2-3 years. It's been responsible for my best weight gain progress every time


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## Basmah

UnXmas said:


> It's good to see someone on this thread who's successfully gaining, Basmah.


Thanks, UnXmas! I just wish it sticks this time around. It's so much easier to lose it than to gain it, as I am sure the majority of your know. I also hope that everyone else finds something that works for them.


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## Basmah

InstantCoffee said:


> It's weird though, we know based on research maltodextrin feeds bad bacteria and leads to dysbiosis but I read a blog post by a woman saying she used maltodextrin to promote growth of healthy probiotics for her crohn's treatment. Maybe it's a double edged sword?
> 
> Probiotics have to eat too.



Eh, I would be cautious when reading blog posts by one person. Chances are she's either (1) not pin pointing what's really helping her (it's never just one factor), or (2) she's trying to sell something.


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## Tubes

Update:

Went to my GI today and I weighed 152lbs about one months ago I was 143lbs and In January I was 126lbs and July 2014 I was 114lbs.This is the most weight gain I've had in the shortest amount of Time since my total Colectomy in 2004 and my GI said I'm at the ideal weight for my height...so that's some good news.


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## Basmah

That's wonderful news, Tubes!


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## UnXmas

I'm glad to hear you've gained, Tubes  . Is it due to diet changes or getting your disease under control, or some other factors?


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## Tubes

UnXmas said:


> I'm glad to hear you've gained, Tubes  . Is it due to diet changes or getting your disease under control, or some other factors?


Thank you,actually it's all 3 I've made a ton of changes to my diet,I had a really bad infection about a year ago and was put on some high powered antibiotics for almost 4 months at the end of the year and once I got off those I started putting on a decent amount of weight and then I've been working with my doctors and a nutritionist(I've done so In the past multiple times but this time it's working)and they had me taking multiple different bulking agents and meds to slow down output.


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## UnXmas

How do you all cope with being full? It's a big problem for me. But I've heard some healthy people say they like feeling full, not extremely full, but they like to finish a meal feeling full enough that they really won't want to eat anything more for a while. I can't stand the feeling, though with so much wrong with my digestive system, I think my version of fullness is not like most peoples', and not just in severity.

Anyone figure out how to eat enough to gain weight and not get full?


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## InstantCoffee

As someone who has gone from flare to healthy in a short enough time to compare, Crohn's fullness is not like healthy fullness at all. Finding higher calorie density foods is your best option.


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## Basmah

I agree with InstantCoffee. Nut butters, avocados, anything high in calories and fat are your best bets.


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## UnXmas

Sometimes it doesn't seem to relate that much to the amount I've eaten. I think I get a fullness feeling from my intestine which is different to the fullness from my stomach.

Before I had my last surgery, I could tolerate very few fruits and vegetables, but one I could eat was avocados. After years of avocados, I don't want to eat them now I can eat pretty much anything! I know they have a lot more fat and calories than other fruits, but I still can't face yet another avocado at the moment. I am loving eating apples and pears again. I know they're no use for weight gain but I like eating them. My main high-calorie foods at the moment are biscuits and chocolate between meals, a lot of cheese added to meals. My weight gain has stalled the last couple of weeks and I am finding it hard to keep eating on the days I feel really full.


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## InstantCoffee

As we've established before, Unxmas, your condition seems much different from mine, however my fullness comes immediately upon consuming a trigger food, it may be a similar mechanism. 

This has actually been a pre-indicator to me for many severe trigger foods. The first sign was a loss of interest in the food that was caused by simply feeling satiated extremely fast upon eating it. 

Often times this progressed over weeks/months/years to full on Crohn's spasms of diarrhea and/or vomiting if I kept eating the food. 

I believe it to be a reaction of the bile production in some form. 

I think the most obvious one for me was Canola oil while had a very specific step-by-step reaction. When I ate it, first I'd feel very full. Then my stomach would start to bloat, but I could tell it was slightly further along the line than the stomach itself, so it had to be in the intestines. The pain was localized in a way that it actually felt like a large volume of bowel movement pressure, but was relieved by throwing up only. Very different than traditional stomach upset, clearly further along in the bowel, but not yet in the large intestines right?

I would have to force myself to vomit to get rid of all the bile that was backing up into my small intestines, and it was very difficult because I could tell it wasn't my stomach contents, I had to get it to go out of my intestines and into my stomach before I could throw it up.

So the curious thing for me is, how long does it take a food to trigger bile production after initial consumption? It seems I can see signs within a 10 minute or so feeding window.


-
Unrelated just thought I'd put an update, maybe too early to jump for joy but 1 week into intermittent fasting diet + a few other modifications but LESS total calories I'm up 2 lb.s


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## UnXmas

I don't really know much about bile production. I don't seem to have trigger foods. I used to have to avoid too much fibre, but since my last stoma surgery I can eat pretty much anything without causing any increase in other symptoms.

With the bowel fullness - I guess this feeling could be a kind of constipation, if it's possible to be constipated with an ileostomy. I just get really bloated, though I still have stoma output. With this bowel fullness I can eat something and feel very full one day, then eat the same amount of the same food the next day and not feel too bad. Or I can wake up in the morning and feel bloated before I've eaten anything. I've considered trying laxatives to try to get things moving and reduce this feeling though I haven't tried them yet. My stomach fullness depends on the amount eaten, and stodgy, rich foods are more filling, liquids generally less filling, so this fullness seems to be pretty logical, I just have delayed gastric emptying so I get fuller on less food than healthy people.


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## InstantCoffee

What kind of rich foods?

Sugars are linked to an increase in secondary bile production which is also linked to Crohn's due to poor absorption rates of secondary biles as well as an imbalance of the taurine to glycine produced secondary bile levels in the intestine.


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## UnXmas

Some foods which are high fat and high sugar, like sponge puddings and fudge. But also non-sugary foods like savoury puff pastry and battered sausages. I hardly ever eat these things because they fill me up after just a very small amount. Some other things I never eat because I feel they'd be too filling or just difficult to digest, like some types of red meat.


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## InstantCoffee

Hm high fat's linked to bile too.

I just tried psyllium husks yesterday and it seems to eliminate my problem with sugar. Was able to eat a handful of chocolate chips without bloating, gas, diarrhea or bile in stool. 

Idk if you can use the stuff on an ileostomy though. It fuctions similar to cholestyramine if you've ever been prescribed that by a doctor.


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## UnXmas

Isn't cholestyramine used to slow diarrhoea though? I have the opposite problem, I need to speed my digestive system up to feel less bloated. I only empty my bag once or twice a day which is very low output.


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## InstantCoffee

Diarrhea can be caused by the same thing that causes slowed digestion. Poor bile 're absorption rates in the ileum which is common with Crohn's patients if there's a backup of bile it takes longer for new foods to move up, and slow digestion of existing food due to the bile salts being the wrong type. I had both slow digestion and diarrhea as a result


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## UnXmas

How did you have it diagnosed?


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## InstantCoffee

I didn't, sugar would cause immediate release of bile in stool then slowed digestion the rest of the day. Increased fullness, cramps and pain. I read PubMed studies about how sugar and Crohn's independently effect bile, connected the dots then found things that solve the problem. The studies and details are in my log.

Cholestyramine was what pointed me in the right direction so I found a natural analog, not the exact same method. Taurine and cholestyramine or psyllium husks are the only things I found so far that directly effect the bile problems Crohn's has


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## UnXmas

I never try and self-diagnose anymore, my medical problems are too unique for research papers. Don't you find yourself seeing patterns that aren't there? I used to do that a lot with my diet. I got so much better when I stopped trying to analyse everything I ate. With this fullness problem, I think it's just delayed stomach emptying and some ileostomy version of constipation. It's just hard to keep eating enough on the days I'm really bloated and my weight has stopped going up the last week or two because I've had too many days where I just gave up and didn't eat so much.


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## InstantCoffee

I had problems following anecdotes for advice and supplements but since I'm now studying things that are borderline universal Crohn's pathogenisis I've had much better results. The intermittent fasting diet and psyllium husks are the result and the best response I've had to home treatment. 
I've never seen patterns that aren't there because I've never seen patterns or useful advice previously, just failed herbal remedies and foods I can't eat. 
On intermittent fasting I have more energy and feel better than I have in about 8 months


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## UnXmas

But with patterns, I mean seeing connections between certain foods and symptoms. You don't try and see connections between your symptoms and what you eat? Or I'd read an article and apply its finding to my illness then later realise it didn't apply at all. Now I only pay attention to the really obvious, and don't worry so much about eating the wrong thing. I looked at the posts you mentioned in your log though, and I think you're using more complicated science than I ever did. But I have had much more success since I stopped trying to control my illness with diet. I definitely feel much better since I stopped worrying about it.


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## InstantCoffee

Nope the patterns I have are very obvious, but I don't understand what's causing my skin lesions. It seems dietary but they take so long to form and are so sporadic I can't find a pattern.

My reactions to foods are sudden and extreme. There's no doubt about gluten, canola, nuts, or high fructose corn syrup. The reaction happens within minutes and lasts days. 
I have experienced false leads but only because I had a new unexplained response and had to know why and to what. 

I'm starting to think salicylate is one of them. Not using products that contain it has helped my skin but that may be a coincidence involving other ingredients. Ingesting them hasn't shown noticeable reactions, the only dots it connects is skin problems and why I can have instant coffee but not ground

I'm moving away from the bacteria theories because either I can't home treat it, or it's not effective. I'm starting to believe bacteria may be the egg not the chicken


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## UnXmas

But from your log it looks like you've been trying to find the foods that cause you problems for a while (years) but you're still unsure about a lot of them. And also that you've often changed your mind and decided that foods you thought were good for you actually aren't, i.e. you saw patterns (correlations) between your diet and symptoms that weren't actually there. And the salicylate idea would be trying to apply something you read to your illness. I used to do that a lot too, then I'd find it wasn't working and move on to the next thing. I guess I just see your attempts to fix your illness through diet as similar to what I used to do, and for me it really didn't help, I just got neurotic about my diet and tried to acheive a level of wellness that it just wasn't possible for me to do. But maybe I'm wrong and you'll do much better, but I felt I should at least warn you, so it may be easier for you to recognise the problem should you experience the same.


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## WingedVictory

InstantCoffee, the way I look at it, you still have inflammatory foods in your diet. Dairy, eggs, and oats from what I recall reading in your own thread. While you may think you tolerate them my theory is that all this creates a viscous circle where your gut will never properly heal...Which I think contributes to leaky gut and nutrient malabsorption for many struggling with weight gain issues. Just my thoughts, I know that it would be inconvenient to find replacements for dairy and grains since your diet is so minimal already. But if you've been taking a good dose of L-glutamine everyday or other healing supplements and your not making any progress, then there must still be something in your diet causing an inflammatory response. 

While I don't have weight gain issues myself, I'm to the point where I'm going to try an auto-immune type diet to heal leaky gut to fix my huge list of non-digestive symptoms. Removing all common inflammatory food groups while supplementing with L-glutamine, gelatin, and bone broth for a good say...6 months. That means: no legumes (soy too), grains, dairy, chocolate, eggs, nightshades, refined sugar, alcohol, seeds, nuts, dried fruit, etc. Maybe I'm wrong, maybe some of you have tried such a minimalist healing diet and got nowhere, but it seems to be as far as we can take a dietary approach. Over the past 5 years trying to get remission I've always cheated with wheat, rice, nightshades, dairy, chocolate, eggs, beans, nuts, alcohol, basically everything. I've never really dedicated a good half year to completely avoiding all these potentially inflammatory foods. I feel like I only have my self to blame for not believing in the protocol and going in circles. I guess only time will tell.

The bacteria side may be a secondary cause of leaky gut that is better treated over the long haul (a few years) with low carb diet and low FODMAP produce choices. Unless you have some rare pathogen that a doctor could help treat somehow. Short of herbal antibiotics that's all you can most likely do yourself. Maybe specific fermented probiotic and prebiotic foods can help restore a good bacteria balance, but that might not be effective until you make progress healing your gut. I have an appointment with my old GI tomorrow to see if I can be tested for SIBO and even I'm still leery of taking antibiotics.


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## InstantCoffee

*UnXmas:*
My problem has been cyclical for years but it's not a mystery to me at all that I can avoid foods and feel significant improvement. The question becomes is the food I have to now avoid that I was previously eating safely an antagonist in the diet, or simply a product of something else causing worsening of symptoms?

If it's something else, I need to be sure I eliminate that before it gets worse. The most reasonable way to know if something is causing a progressive deterioration of symptoms is to understand what causes the inflammation / symptoms which is why I've been looking for causes of Crohn's. 

The bacteria cause was highly supported by the fact my symptoms have always linked back to grains and sugars, so I threw all my effort at that as my focus. I used probiotics, sugar restriction, natural anti-bacterial agents etc. but nothing produced positive results on that front. I believe maybe the first time carb restriction worked it is possible I had SIBO or candida, but it's not working like it did before, and I can't have rice anymore like I could then so something is different.

I had swollen / infected lymph nodes at the time and the diet saved me from those where doctors failed to help. My approach has produced amazing results on numerous occasions, it just takes a lot of misses before I find the target. 

Right now I'm feeling very good. I've even started weightlifting again. I have energy all day, I do a fairly physical job and I don't need to stop and take breaks all the time anymore. What I've found right now has definitely been worth all the missed steps and research.


*
WingedVictory:*
My concerns would be
-How high is your calorie intake going to be
-How diverse will your micro nutrient intake be, will you be getting all your vitamins and minerals naturally?
-How high will your cholesterol intake be via animal fats

The last time I got what was lasting 'remission' I suppose, I cut dairy and sugar and only had rice as a grain, fruits / vegetables, meat and eggs as food. 

I did this for about 2 months strictly while supplementing undecylenic acid for candida (not sure if this helped or not) and high doses of vitamin C. During this time I had no symptoms and I was able to re-introduce spicy and high fiber foods I hadn't been able to eat in years. 

I have concerns about blanket elimination diets though like what if you're nuking your natural probiotics, then you have to rebuild those from scratch. If you do it wrong you may just be plowing the fields for bad bacteria, and we don't know enough about proper bacterial balance.


Just thought I'd add, I'm also trying DMSO right now but I don't want to go too much into it, it's not something I'm 100% convinced of the safety of to advocate for others.


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## UnXmas

InstantCoffee - that's ok, as long as it's helping you. I tend to feel I have a responsibility to say so when I think others may be having problems they haven't realised, but I only have your posts to go by, so I'm sorry if I reached the wrong conclusions. But since I do feel the need to point out problems, I would also add that candida and leaky gut are not proven in the way that you and WingedVictory are using the terms. I know there is such a thing as intestinal permeability, but its role in health and how to treat it are unclear. I've described my experiences with candida in this thread: http://www.crohnsforum.com/showthread.php?t=67910&highlight=candida

Ok, I've said my bit now. 

At my pre-op assessment this morning my weight was 38kg (in clothes). Up from 29kg last Summer, and from 33kg after my surgery last Autumn. I did this by eating more than I'm comfortable with a lot of the time, and supplementing my diet with biscuits and chocolate and drinking Coke (the rest of my diet is healthy).


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## UnXmas

> Just thought I'd add, I'm also trying DMSO right now but I don't want to go too much into it, it's not something I'm 100% convinced of the safety of to advocate for others


That's a new one on me. What does it do?


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## InstantCoffee

No doubt leaky gut is poorly understood, as is prevalence of candida. 

For now leaky gut is the closest theory we have to an explanation to crohn's induced food sensitivities, so I choose to pursue it from that angle until. 

DMSO is a topically applied solvent that's treated as a pancea, if you will. It's a powerful anti-oxidant, anti-inflammatory and pain reliever. It's been used successfully to treat a handful of medical conditions but it's currently only FDA approved for interstitial cystitis. 

It's believed to be safe and only has 1 death attributed to an allergic reaction.

The risk is that it's a powerful solvent and can transport chemicals across the skin into the blood so careful control of contaminants when applying it must be exercised. 

We have posts by multiple people on the forums saying it's worked to end flares or even bring remission. 

It also doesn't have immune suppressing effects like a biologic.


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## UnXmas

I had nutritionists and other alternative medical practitioners treat me for leaky gut amongst other things. I only got sicker, it was disappointment after disappointment, I wasted time and money and effort eating a diet that isolated me socially. People who promote unproven medical conditions and treatments do a lot of damage and cause a lot of pain.

Leaky gut is not a recognised medical condition, and no diets, supplements or anything else have been proven as leaky gut treatments.


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## InstantCoffee

Alt medicine is likely 90% quacks, and the other problem is they likely treat with blanket treatments like "Hey, garlic helps digestion, give them garlic!" Garlic messes me up. 

You'd have to find a good one that is able to actually look at you on an individual level instead of just taking the most common diagnoses as their immediate approach. It's one reason I don't care to invest in one. I'll be really pissed if I go to one and they are way off base and when I try to explain what I know they put down my ideas because they're an expert. I will be livid, cause I have had doctors do that and be wrong in the past. 

As far as leaky gut it's not 100% bunk. From wiki:
http://en.wikipedia.org/wiki/Intestinal_permeability



> A proposed medical condition called leaky gut syndrome has been popularized which theorizes that restoring normal functioning of the gut wall can cure many systemic health conditions, but there is little evidence to support this theory, and no evidence that so-called 'treatments' for 'leaky gut syndrome', such as nutritional supplements and a gluten-free diet, have any beneficial effect for most of the conditions they are claimed to help.[7]


Increased intestinal permeability is a known thing, but leaky gut syndrome and its cause / effects are not scientifically validated. 

If you look up Peyer's Patches though you'll see their implicated in the pathogenesis of Crohn's. 

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3004000/


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## Basmah

I am happy you are having success without worrying as much. I think there comes a time when every patient should reach that point. Unfortunately, for people like instantcoffee and I are not at that point yet. For instance, I have spent too many years not worrying about what went in my system, and overtime, I became intolerant to more things. It took me a while to realize that I had to control what I ate. So I am on the other extreme end, but I feel great about - partly because I know that at some point I will find some middle ground.


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## UnXmas

I did say in my post above: 





> I know there is such a thing as intestinal permeability, but its role in health and how to treat it are unclear.


So we can agree that it at least exists.


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## UnXmas

Today I finally got back the results of my gastric emptying study, so now I've had it confirmed I have gastroparesis. It doesn't mean anything more can be done to stop me feeling so full but it's nice to have some objective confirmation.


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## UnXmas

Please keep this discussion focussed on supporting people who are trying to gain weight! That's what this thread is for.


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## WingedVictory

UnXmas said:


> Today I finally got back the results of my gastric emptying study, so now I've had it confirmed I have gastroparesis. It doesn't mean anything more can be done to stop me feeling so full but it's nice to have some objective confirmation.


Does having gastroparesis relate to not being able to absorb nutrients and gain weight?

It makes me wonder if prokinetic agents like low dose naltrexone would help with that.


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## UnXmas

> Does having gastroparesis relate to not being able to absorb nutrients and gain weight?


Not directly, but it can lead to bacteria overgrowth due to undigested food, and the bacteria overgrowth can cause malabsorption. Mostly gastroparesis just makes it hard to eat enough due to fullness and other symptoms.


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## Lisa

UnXmas said:


> Please keep this discussion focussed on supporting people who are trying to gain weight! That's what this thread is for.


I have removed the posts that were obviously off track pending starting another thread for that discussion.  

As UnXmas has said - please keep things on track here as this is a support group to GAIN WEIGHT - not discuss side topics.


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## InstantCoffee

Words can't express how nice it is to slip up and eat something I shouldn't and not lose sleep or get diarrhea, just some bloating and very minor nausea.

I tried some really natural chocolate with caocao nibs in it last night. Didn't sit well but something like that normally would put me out all day the next day with diarrhea. 

Current protocol is working good. I just added MSM to the mix and got a shipment of pure taurine powder.

Salicylates don't appear to be my problem, turns out I had a false positive. When I cut salicylate skin topicals i also cut sulfates which were the real reason for my acne, but now i know to buy sulfate free soap and shampoo.


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## UnXmas

I'm taking a break from gaining weight, now that doctors have stopped threatening me with hospital. My digestive system and my mind need a break from the stress. I'm still going to pay attention to what I'm eating so I don't lose much. I'm still more than 15kg underweight so I can't afford to lose much.


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## Gail Jothen

My nutritionist says I need fat to gain weight;  she suggested coconut oil and Udo's oil blend:3-6-9.    Oil or fat cause me stomach pain.  Anyone have any idea why?


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## UnXmas

What kind of pain is it? Some fatty foods can cause heartburn. If it's heartburn there are many treatment options, and some types of fatty food will give more problems than others.

Besides heartburn, I know rich or greasy foods can be hard to digest, I'm not sure why. Are you able to eat small amounts of fat without pain? Do you have a problem with all fats and in all forms? E.g. is it oils that mostly cause you pain or would you get the same pain if you added cheese or butter to meals? What about smooth nut butters? There are many fat options so you may find something you're ok with. 

Fat is very helpful to gain weight, and some is necessary for your health, but if it's really problematic for you you could probably gain weight on a diet that isn't high in fat, though you'd need to eat more as carbohydrate and protein foods are lower in calories than fats.


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## InstantCoffee

I used to get pain from canola oil. Maybe corn oil too, I remember corn oil gave me issues but I don't recall if it was the same response as canola. 

If I ate it my small intestines would flood with bile, motility would stop and I would get knife-like pain in my stomach. 

It was from the small intestines overflowing with bile and other fluids and backing up the digestive process. I can tell because my stomach felt empty but if I forced myself to vomit, I could feel it spilling back into my stomach, then I would get relief after thoroughly emptying everything out.

The pain was so bad I couldn't stand upright because my abdominal muscles would put pressure on my gut which already felt ready to burst. Because of all the pressure it often felt like I had diarrhea or a big BM but I couldn't go, then when I threw it up that pressure / urge would go as well. 

Is it anything like that, or a different kind of pain?

How are you with home made chicken / beef broths? Many people with CD have problems with vegetable oils. Coconut and extra virgin olive oil are the only ones ( to my knowledge ) I can safely  tolerate.


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## Gail Jothen

I am fine with broths, but I always take all the fat out of homemade broth.  Should I keep it?  Good to know others have problem with veggie oil.  Coconut oil bothers me.   Udo's oil,  a combination of  veggie oils,  is ok in very small amounts,  like 1 tsp in a bowl of rice.
I just bought light olive oil and hope I can ingest more of it.   I salute with olive oil and it seems fine.  At least I am not losing weight, but I wear size 0 and used to wear size 8,  2 years ago.   Size 0 is very hard to find;   I did find a GapKids jeans that fit great.


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## InstantCoffee

Gail Jothen said:


> I am fine with broths, but I always take all the fat out of homemade broth.  Should I keep it?  Good to know others have problem with veggie oil.  Coconut oil bothers me.   Udo's oil,  a combination of  veggie oils,  is ok in very small amounts,  like 1 tsp in a bowl of rice.
> I just bought light olive oil and hope I can ingest more of it.   I salute with olive oil and it seems fine.  At least I am not losing weight, but I wear size 0 and used to wear size 8,  2 years ago.   Size 0 is very hard to find;   I did find a GapKids jeans that fit great.


You should keep it in if it doesn't make you sick.

I was more curious if you notice a difference between non-fried animal fats and vegetable fats. 

Fats are easy to absorb calories and may be an important part to a diet for someone in recovery stages of Crohn's. 

It may be possible for you to reintroduce coconut / olive oil in the future, but I can't make any guarantees. I've had intolerance to them both in the past but it's since gone. They both can be a good part of a diet when tolerated, but you shouldn't try to eat things if they make you sick, even in small amounts they could be triggering a bad response in the gut.


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## kikig

i've always used fractionated coconut oil for cooking, or anywhere oil is required. I've never had issues with it, but even if I had intolerance, it was so long ago I've forgotten.

I've recently discovered the same company who produce the oil have margarine so I started to use it. That opened a whole new world as I have never been able to eat regular butter. Perhaps you can see if a margarine spread is available? It may be that the margarine format is easier to tolerate? Again, just use sparingly at first to get used to it.

Coconut oil requires gradual introduction as it is a medium chain fat, so the absorption method is different than olive oil. That might be what is causing some difficulty.

Have you tried cottage cheese for weight gain? You can get the low fat version which is packed with protein. I am addicted to it.

Greek yoghurt is also great, the low fat version with a sprinkle of cinnamon powder and honey if you can tolerate. It is full of protein and such a treat 

If you need more info on the brand I use its here http://www.ceres-mct.com/ sorry the page is only available in german or italian right now, but google it for resellers


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## UnXmas

Aren't cottage cheese and low fat yoghurt too low calorie for weight gain? I get that fatty foods aren't going to help you gain weight if you can't digest them well enough, but don't you have to eat an awful lot of low fat cottage cheese to get a significant number of calories from it?


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## InstantCoffee

UnXmas said:


> Aren't cottage cheese and low fat yoghurt too low calorie for weight gain? I get that fatty foods aren't going to help you gain weight if you can't digest them well enough, but don't you have to eat an awful lot of low fat cottage cheese to get a significant number of calories from it?


It's also high in protein which can have satiating effects. 

In general 
Fats = medium satiation, highest caloric density
Carbs = Low satiation, medium-high caloric density
Protein = high satiation, medium caloric density.

There are exceptions, like high fiber carbs are high satiation, low calorie. High fat proteins are higher calorie, but that's because of fats not proteins. 

That's not to say someone should live off fats and carbs to gain weight - this is why a balanced diet is ideal.


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## UnXmas

I guess yoghurt may not be as satiating as some protein foods as it's almost liquid (and cottage cheese can be semi-liquid) as liquids leave the stomach faster than solids.


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## kikig

Exactly! You have to balance it and  check what has been substituted in favour of "low fat".
Again, its individual and for me it has to be low fat and certain types of fat, as well as high protein.
Gaining weight is not as easy as the so-called-normal people believe it is


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## Gail Jothen

thanks for the discussion.  Very helpful and informative.   Kikig,  I am dairy intolerant.  Regular milk,  cheese,  ice cream,  cream cheese all cause pain.   Inst. Coffee, I can eat a little butter on non gluten waffle,  for some strange reason.   But  I ate some Lactose free Yoghurt yesterday and it caused pain.   Strange.  I drink LF milk with no problem.  I will try coconut oil gradually.  So I don't know whether my body can take no veggie oil better than veggie oil,  but it is something to explore.   It is so tiresome to always be focused on what I can or can't eat!  After having Crohns for 5 years I keep thinking I should know everything about what I can eat...and should be gaining weight,  but the reality is different.  Again thanks for your help.


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## InstantCoffee

Gail Jothen said:


> thanks for the discussion.  Very helpful and informative.   Kikig,  I am dairy intolerant.  Regular milk,  cheese,  ice cream,  cream cheese all cause pain.   Inst. Coffee, I can eat a little butter on non gluten waffle,  for some strange reason.   But  I ate some Lactose free Yoghurt yesterday and it caused pain.   Strange.  I drink LF milk with no problem.  I will try coconut oil gradually.  So I don't know whether my body can take no veggie oil better than veggie oil,  but it is something to explore.   It is so tiresome to always be focused on what I can or can't eat!  After having Crohns for 5 years I keep thinking I should know everything about what I can eat...and should be gaining weight,  but the reality is different.  Again thanks for your help.


Knowing what you can eat and why is a complex process to fully understand. 

I cannot have any kind of yogurt I've tried, but I can have almost limitless milk or cheese. 

If you want a deeper understanding of the chemistry and bacterial factors behind crohn's dieting you can check out my log: 
http://www.crohnsforum.com/showthread.php?t=72046&page=2

There's a lot of open discussion going on, I post a lot of articles, not everything is set in stone, but it gives you some ideas behind what is a good / bad idea for making a Crohn's diet, if you want more info / help feel free to PM me.


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## Gail Jothen

thank you dear man!


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## Mr chicken

Have you tried avocados ? High in fat and nutritionally dense .
Nut butters as well either added to things or on your favorite type of bread ( gluten free if needed ) or add to smoothies ( pumpkin purée /nut butters /milk ( almond - cashew etc) plus ice and honey )
6 smaller meals - normal lunch plus cereal two hours later - so you don't have to process too much at once 
Coconut or almond or cashew ice cream


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## duh panda

I'm not sure if any of this has been touched on here yet, but I figured I'd contribute what I've found successful regarding weight management. My story/ diet experiences and experiments etc. can be found in a couple other places around the forum or my blog so I'm not going to bother here.

I did see information that I found very intriguing regarding the mental connection to eating and weight gain or loss while researching smoothies and juicing. Most think of smoothies, but especially juicing, as methods to encourage weight loss but I don't think this is accurate. They can be great sources for the micro-nutrients many of us may be deficient in. 

What you choose to put into the juice or smoothie aside, the info I read essentially mentioned the effect liquid "meals" had on one's desire to eat. There are different types of hunger (Habit hunger · Mind hunger · Taste hunger · Stomach hunger · Body hunger) and illness, etc. effects one's hunger responses differently. For example, we may shut down/ block mind hunger due to pain (food aversion). While liquid meals can provide nutrition or calories a liquid meal does not satisfy the primal urge to eat (a potential issue for those trying to lose weight, as this can lead to over-consumption for that group). I think this could be turned around to be beneficial for those of us trying to gain. I gave up long ago trying to figure it all out and I don't have it all broken down, it's just a thought. 

I wonder if it can be used to help rehabilitate and establish healthier eating habits and desire as I know I've developed some unhealthy, even obsessive approaches regarding eating let alone the concept of diet in the past. 

Usually, I don't feel any desire to eat. But I tend to notice a desire and decrease in aversion after I've had 8-10 oz. of a smoothie regardless of how calorie dense I try to make it. I make sure I hit my consumption goals by setting alarm reminders for meals/ snacks and enlisting help on my especially crummy days when I may be experiencing less then my average "low" energy levels.

Dietary, I work to add fats to foods that are generally lacking in anything (1 tbsp. coconut oil in coffee or tea is my go to. The texture in tea did take some getting used to, but it's almost like creamer in coffee - bonus that it generally leads to me raiding the cupboards for a snack within 45 mins. without needing to be prompted by timers). Coconut oil has some interesting attributes regarding digestion and the digestive tract. I don't understand it so much, but it seems to help. At the very least, its extra calories I appear to tolerate well and despite being a fat I don't notice signs of fat-malformation in my bms.

Despite flaring terribly the past 2 years, showing new signs/ manifestations of disease, and struggling to hold/ prevent weight loss my mineral/ vitamin levels apart from B vitamins have consistently returned in the normal range 90% of the time. 

I don't know why these things are, in the past my levels have been really low. I've been pretty disciplined with including a smoothie a day for the past year and utilizing coconut oil for 2 years. I feel these two aspects of my diet have been instilled as a long enough and consistent enough addition to attribute it to the weight management I've achieved and bouncing back from persistent infections (following the courses of appropriate treatment) keeping out of the hospital. 

When not experiencing infections I have experienced steady weight gain of about 1 lb. every 2 weeks if I can maintain my macro-nutritional needs hitting 3000 calories/ day - I often fall short because this simply requires such a large amount of tolerated foods I find I struggle to keep up with the constant eating, preparation, and cooking (7-8 "meals" per day) unless it's my only focus day in and day out which isn't realistic or I think a smart pursuit.


----------



## jayann

UnXmas,

I like to google for ideas and came up with these two links for things to eat to gain weight.

http://www.webmd.com/diet/how-to-gain-weight


http://www.activebeat.com/diet-nutrition/11-foods-that-will-make-you-gain-weight/11/

You'll have to cut and paste into browser.  I don't know why they didn't copy as links to click on.

I hope you can find something that will appeal to your appetite.  I think the nut butters might be good if you can't eat insoluble fiber during a flare.

Cream cheese with honey makes a tasty dip for apple slices is you could eat them without the peels.  

Good luck.  Even if you're not hungry, try eating small amounts of things you like somewhat.  Think of it as taking your medicine and see it as making you stronger and healthier.  Good luck.


----------



## UnXmas

Thank you, jayann. The trouble is I need more than a few mouthfuls, when I was in hospital and they were monitoring all my food I could eat 3000 calories a day and still lose some of the time.

The links work fine for me, I'm going to have a look now.


----------



## InstantCoffee

If anyone is looking at protein shakes, I just found "True Athlete" Natural, it comes in chocolate, vanilla and unflavored and I really like the ingredients list.

Unflavored:
Whey protein concentrate, soy lecithin, Bacillus coagulans, lactase digestive enzyme, papain, bromelain

100 calories 20g protein per serving, 24 servings, costs about $24 so $1/serving. 

Chocolate:
Whey protein concentrate, cocoa powder(processed with alkali), natural flavors, inulin, xanthan gum, soy lecithin, salt, stevia extract, LactoSpore® L.sporogenes, lactase digestive enzyme, papain, bromelain.

A lot of companies are now offering 'natural' lines of protein including Isopure, Optimum Nutrition, and Pursuit Rx to name a few. Most of these appear to have crohn's-safe ingredients. 

I would advise against Muscle Milk brand as it has a bad reputation for heavy metals.


----------



## kikig

Optimum Nutrition is my brand of choice actually, and I supplement with separate probiotics.

The vanilla flavour is pretty good, not too sweet. The banana flavour is alright too, although at times I find it a bit too "mediciney" flavour (I remember it was a trend for all liquid medicines to be banana flavoured at some point  )


----------



## InstantCoffee

Regular ON except double rich chocolate and vanilla have sucralose which makes me sick and I'm not a big fan of the health implications of.

Most not naturally flavored proteins contain sucralose actually. A big problem for me.



> The featured review also concluded that sucralose destroys gut bacteria. (In fact, animal research8 published in 2008 found it could kill as much as 50 percent of your microbiome.)
> 
> This is very important, as anytime you destroy healthy intestinal bacteria, you open yourself up to unfriendly micro-organisms that can cause health problems. Your immune system, which is imperative for general health, is dependent on healthy gut flora, so the idea that this artificial sweetener may destroy up to half of all your healthy gut bacteria is disconcerting to say the least.
> 
> Worse yet, sucralose appears to target beneficial microorganisms to a greater extent than pathogenic and other more detrimental bacteria. And remarkably, according to one study, these adverse effects on gut microbiota remained even after a three-month long recovery period...
> 
> Early studies, upon which its approval was based, claimed that sucralose would simply pass unchanged through the human gastrointestinal tract, but more recent investigations show that it is indeed metabolized in your gut. And, as reported in the featured review, "the identity and safety profile of these putative sucralose metabolites are not known at this time."


http://articles.mercola.com/sites/articles/archive/2013/12/18/sucralose-side-effects.aspx


----------



## kikig

Fair enough @instantcoffee and I am very fortunate not to have issues with sucralose.

I do prefer vanilla at any rate 

I use ON casein in the evening, vanilla flavour too so I don't wake up at 3am starving and looking for poached eggs and toast


----------



## drewpalermo

The problem with nut butters is they're high in omega 6 fats (most of us are deficienct in omega 3s to balance them out), and they're also high in copper (depletes us of zinc), and the phytic acid debate.


----------



## UnXmas

drewpalermo said:


> The problem with nut butters is they're high in omega 6 fats (most of us are deficienct in omega 3s to balance them out), and they're also high in copper (depletes us of zinc), and the phytic acid debate.


When you're trying to gain weight, especially if high-fibre foods give you trouble, some of the "bad" fats in nut butter are probably worth it for the calories. And nut butters are much healthier than many high calorie foods.


----------



## UnXmas

I lost some weight, a kilo since my doctor last weighed me in May. I've been gaining since I left hospital last September/October so she's letting me try and gain it back on my own first.


----------



## Gail Jothen

And I can't take anything with milk or milk products such as whey.   And yes,  sucralose is a no no for me also.  So I think I am gaining a little weight,  maybe 2 pounds in 2 months which is great.   My dr thinks I will only gain 5 or 10 pounds overall;  I will never weigh what I really like to.


----------



## tincho_lavie

Hello!

I have a question... I've been taking a Weight Gain Suplement for the last three months... I didn't read the Warnings in the package until now, and I found out it says
"Do not take this product if you have or are at risk for any medical condition or disease incluiding but not limited to diabetes [...] or are suffering from any inflammatory disease"
Do you guys know what could be the possible side effects? It has really  helped me to gain some weight, I've been training for the last year, but three month after I started it got really hard for me to gain weight... I tried with a protein supplement but it didn't work, then I tried this weight gainer (Gain Fast, made by Universal Nutrition) and started gaining weight inmediatly (1kg per month aprox) 

What do you think? Should I stop taking it?


----------



## duh panda

tincho_lavie said:


> Hello!
> 
> I have a question... I've been taking a Weight Gain Suplement for the last three months... I didn't read the Warnings in the package until now, and I found out it says
> "Do not take this product if you have or are at risk for any medical condition or disease incluiding but not limited to diabetes [...] or are suffering from any inflammatory disease"
> Do you guys know what could be the possible side effects? It has really  helped me to gain some weight, I've been training for the last year, but three month after I started it got really hard for me to gain weight... I tried with a protein supplement but it didn't work, then I tried this weight gainer (Gain Fast, made by Universal Nutrition) and started gaining weight inmediatly (1kg per month aprox)
> 
> What do you think? Should I stop taking it?


Looking at the ingredients list for Gain Fast gainer the only reason I can think it'd have such a disclaimer on it is due to the herbal additives which aren't generally FDA regulated/ studied and that gainers usually are high calorie/ high sugar which can be detrimental for some as it'd spike levels. Just a guess, but the reason for warning diabetes/ inflammatory diseased individuals could be due to med. interactions where spiked blood sugar could be a huge concern such as while taking high doses of prednisone or struggling with non-medicine induced diabetes. The warnings that many products come labeled with highly depends on the state in which it's sold. For example, the same product probably carries a birth defect warning label in Cali or New York due to stricter guidelines. I'd run it past your doc. see what their thoughts are (if any) just to be on the safe side.


----------



## Gail Jothen

*Remicade*

segue 
to Remicade please:   I am on my 4th infusion which only worked 3  weeks and was suppose to last 8 weeks.   I do well a couple days then a couple days of severe pain.  I still take Budesonide.   I have not gained ANY weight, maybe lost (I don't have a scale).   Anyone else find Remicade not work?   What options did the dr have or do?   I live in fear every time I eat.  Yes, I eat mostly very mild food:  I base my diet on FODMAP but even limit much that is on it.


----------



## duh panda

Gail Jothen said:


> segue
> to Remicade please:   I am on my 4th infusion which only worked 3  weeks and was suppose to last 8 weeks.   I do well a couple days then a couple days of severe pain.  I still take Budesonide.   I have not gained ANY weight, maybe lost (I don't have a scale).   Anyone else find Remicade not work?   What options did the dr have or do?   I live in fear every time I eat.  Yes, I eat mostly very mild food:  I base my diet on FODMAP but even limit much that is on it.


I'm not familiar with Budenoside, but if it's a corticosteroid like Prednisone Corticosteroid's can effect the body's total body protein metabolism. Muscle loss/ atrophy can occur regardless of exercise, balanced diet, etc. Regardless of how my disease may improved on heavy hitters, if there's a moderate to high dose of corticosteroid's I won't gain weight. But that's not really what you asked..

It's always been my understanding the Remi is most likely to benefit a patient and for a patient to show longer response if it's paired with a maintenance med. to slow development of antibodies and losing response. Ask your GI about the possibilities of that. My GI has used azathoriprine, Methotrexate, 6-MP at various times in conjunction with biologics and steroids. Remi can also be infused as often as every 4 weeks and dose can be upped from the standard infusion dose if showing limited response and administering is tolerated. Similar to remicade but different in administration method and compounds are the biologics Humira and Cimzia. 

Outside of biologics ask your doc. about Entyvio if it hasn't already been discussed. It works SLOW. Like 9 months+ to really kick in and seems the longer people are on it, if they show response, the better it gets including weight gain. There's also some cool stuff happening in the stem cell realm regarding Crohn's, I believe it's in trial's currently in the US, but there may still be some trials open and getting going. 

There's a support thread for Remicade patients here on the forum. Check it out, might find others who have been in a similar position and found a solution.


----------



## Gail Jothen

duh panda,  thank you so much for all this information which is all new to me.  My dr has not  mentioned any of this.   I will print this out and show it to him.   I am pretty desperate.


----------



## my little penguin

Sometimes Remi takes longer to work 
Higher dose and shorter window between doses 
Ds took 7.5 mg/kg every 6 weeks to get there 
8 weeks at 5 mg/kg never happened since he got bad so fast .
When he started to get bad again while in humira /mtx
Gi added partial en crohns exclusive diet .
This has helped tremendously
Easier than een but as effective as Pred in refractory or hard to treat crohns 
He also started to gain weight again.
Stalled  weight gain is not a good thing for an 11.

Paper on the diet 
http://www.ncbi.nlm.nih.gov/m/pubmed/24983973/


Thread on the diet 


http://www.crohnsforum.com/showthread.php?t=71686

Goes through the do's and don't s

Good luck


----------



## Gail Jothen

my little penguin, thanks for the info.  I can do nothing until I see my dr which is in 10 days and I am really suffering today,  i can hardly stand it the pain is so bad.  Ice packs no help.  I am hardly eating anything.  Diet sounds interesting....I am 70 years old,  wonder if it helps older people.


----------



## my little penguin

Ask about a tens unit 
Attaches and can help abdominal pain
Electric heating pad is my kids best friend
Warm buddies makes microwaveable blankets etc that help some
Formula only ( ensure boost peptamen etc..) without food can also help
Can you call your Gi Tuesday ?
Maybe they can get you something earlier


----------



## Gail Jothen

thanks, my little penguin.  had not thought of a tens unit for my pain.   I can't take any supplement with dairy which most have.   Yes,  I will phone my GI on Tuesday but I am even thinking of calling him tomorrow and tell him I am going to the emergency as I cannot endure this pain behind my belly button.


----------



## my little penguin

They could direct admit from ER to get you some relief 
The mini hit packs they use for skiing also work well
It wasn't until Ds got on the diet that we saw relief though
This was after 6 months - 4 ER trips 2 inpatient stays a scope and mre plus multiple stool tests .

ER is always an option
You could call on call Gi tonight and see if they have suggestions


----------



## Gail Jothen

my GI is a solo practice and I really hate to call him on Sat. nite so will wait until tomorrow and see how I feel and if I feel as I do today I will tell him I'm going to the ER.   I can't wait until my app. in 10 days.    My GI did talk to me last week and said he needed to talk to me in person about the side effects of any med he would give me..and told me to wait until my app on Sept. 15...but now I feel I just can't wait that long.   Thanks for your comforting response.  I am not familiar with een diet,  just use FODMAP, but obviously it is not enough.


----------



## my little penguin

EEN is formula only 
No food
So you drink all ensure or boost etc
It's as effective as Pred in inducing remission in kids
Not sure on adults
The hard part no food
Since once you introduce food again the symypoms come back
Ds did een for 9 at dx ( age 7)
Just did two weeks of een this time around before adding the crohns exclusive diet 

Good luck


----------



## my little penguin

http://www.crohnsforum.com/showthread.php?t=43002

Link with tons of kids stuff
But papers on een


----------



## Gail Jothen

thanks my little penguin.  I did go to the ER yesterday and they gave me demerol which stopped my pain, and 10 pills to take home until I see my dr on Friday for Remicade,  I guess,  I'm not sure what my dr will do.  I am eating only liquid food,  regular stuff that I liquify in my blender.  I feel strange from the demerol but my tummy was fine today.  I"l let you know what happens Friday!   Thanks so much.


----------



## Gail Jothen

my little penguin,   I looked at the website but could not figure out which one talks about een.  Can you give me the title,  please?   Thank you!


----------



## my little penguin

EEN & NUTRITION RELATED ARTICLES:


*Nutrition in Paediatric IBD - Paper
http://www.medicine.virginia.edu/cli...ril 2012.pdf

*Use of Enteral Nutrition for the Control of Intestinal Inflammation in Pediatric Crohn Disease
http://www.naspghan.org/user-assets/....29[1].pdf

*Enteral Nutrition in Paediatric Crohn's Disease - Slide Show
http://www.ibdcme.tv/library/ppts/EnteralNutrition.pdf

*Nutrition in Pediatric Inflammatory Bowel Disease
http://mobileservices.texterity.com/...icle_id=166918

*Effect Of EEN On Gut Microflora Function In Children With Crohn's Disease
http://www.ncbi.nlm.nih.gov/pubmed/23016828

*Treatment Of Active Crohn's Disease In Children Using Partial Enteral Nutrition With Liquid Formula: A Randomised Controlled Trial
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1856067/

*Effectiveness Of Concomitant Enteral Nutrition Therapy And Infliximab For Maintenance Treatment Of Crohn's Disease In Adults.
http://www.crohnsforum.com/showthread.php?t=55580

*Physician Attitudes And Practices Of Enteral Nutrition As Primary Treatment Of Paediatric Crohn Disease In North America
http://journals.lww.com/jpgn/Fulltex...Enteral.9.aspx

*Enteral Nutrition: The Neglected Primary Therapy of Active Crohn's Disease
http://journals.lww.com/jpgn/Fulltex...Therapy.3.aspx

*Enteral Nutrition and Corticosteroids in the Treatment of Acute Crohn's Disease in Children
http://journals.lww.com/jpgn/Fulltex..._in_the.5.aspx

*Definitions Of Different Types Of Enteral Formulas
http://www.thriverx.net/PDFs/Adult%2...20Formulas.pdf

*A Retrospective Study Showing Maintenance Treatment Options For Paediatric CD In The First Year Following Diagnosis After Induction Of remission With EEN: Supplemental Enteral Nutrition Is Better Than Nothing!
http://www.biomedcentral.com/1471-230X/14/50/abstract

*Enteral Nutrition in Crohn’s Disease: An Underused Therapy
http://www.hindawi.com/journals/grp/2013/482108/

*Enteral Nutrition as First-line Therapy in Treating Children and Adolescents with Crohn’s Disease
http://www.naspghan.org/files/docume...ewsltr_WEB.pdf


----------



## my little penguin

This one covers een and adults
http://www.crohnsforum.com/showthread.php?t=55580


----------



## Gail Jothen

Wow,  you surely answered my question!   Lots for me to look at!  THANK YOU


----------



## JeffBee

InstantCoffee said:


> If anyone is looking at protein shakes, I just found "True Athlete" Natural, it comes in chocolate, vanilla and unflavored and I really like the ingredients list.
> 
> Unflavored:
> Whey protein concentrate, soy lecithin, Bacillus coagulans, lactase digestive enzyme, papain, bromelain
> 
> 100 calories 20g protein per serving, 24 servings, costs about $24 so $1/serving.
> 
> Chocolate:
> Whey protein concentrate, cocoa powder(processed with alkali), natural flavors, inulin, xanthan gum, soy lecithin, salt, stevia extract, LactoSpore® L.sporogenes, lactase digestive enzyme, papain, bromelain.
> 
> A lot of companies are now offering 'natural' lines of protein including Isopure, Optimum Nutrition, and Pursuit Rx to name a few. Most of these appear to have crohn's-safe ingredients.
> 
> I would advise against Muscle Milk brand as it has a bad reputation for heavy metals.


I am also trying to find a "natural" protein shake.  I found one called Orgain Organic Protein Powder.  Have you tried this one?  In another group there was an issue with inulin causing a lot of gas.  Thanks!


----------



## Gail Jothen

JeffBee:   is there any protein shake that does not have milk in it?    I can't tolerate dairy.
Thanks,


----------



## my little penguin

You can't tolerate lactose or are you milk allergic?
Boost and ensure are extremely low lactose 
Peptamen is lactose intolerant friendly  and insurance tends to cover through durable medical supplies but not good for milk allergy - semi elemental ( more broken down easier to digest better quality fatty chains etc..)
Neocate /elecare /Eo 28 splash are elemental ( amino acid based - no allergens very little intestine needed to absorb it)

OTC orgain vegan has no milk or soy in it 
But it is not complete nutrition 
Just fruit/veggies and protein.


----------



## JeffBee

Gail Jothen said:


> JeffBee:   is there any protein shake that does not have milk in it?    I can't tolerate dairy.
> Thanks,


Gail, I bought this Orgain Organic Protein Powder today and there is no dairy.  Ingredients look very good, but the stevia has such a sweet after taste that I may return it.  They said I could get full credit if I used up to half the product.  Tomorrow I will be cutting it with hemp powder to see if that helps on the sweetness.  But look it up, it's ingredients are very good and it has a higher protein content than hemp powder.


----------



## Helene

Hi, I haven't posted in a while but my weight is still way below what it should be. So I'm trying some new things and trying to get away from all the pharmaceuticals. I'm trying to be as organic as possible. I've been doing this for a few months and thank goodness for coconut oil and almond butter! I often have an issue with the taste of the powders...some actually make me nauseous. Does anyone have suggestions to which powders are palatable when mixed with something that is not full of sugars and/or lactose?


----------



## Gail Jothen

wow,  Helen, you must be doing well to not have to be on Remicade or Humira.   I am on Entocrot and Remicade and still not doing well.  I, too,  am about 30 pounds underweight and seem to keep losing,  not gaining.   I make Smoothies:  1 scoop      Jarrow's Brown Rice Protein,   8 0z water,   1/2 banana,  and you can add coconut oil or almond butter.    It tastes pretty good.   I am on the Low FODMAP diet.


----------



## Helene

I wish I was doing better! Remicade stopped working for me after I had my 2nd child and I had to come off Humira due to a horrific allergic reaction that put me in the hospital for 2 weeks. I was on Entocort for maintenance, but I have spent half my life on steroids and I just wanted to get away from that course of treatment. 
I'm frustrated with doctors, nutritionists and feeling like a guinea pig. Have you had positive results with the FODMAP diet?


----------



## Gail Jothen

Yes,   FODMAP has given me the best parameters on what to eat and what not to eat.  I have, of course,  customized it for myself,  as intended by the creators of it.   I don't eat nuts and some other things.    I think Crohns is a very complicated disease and everyone who has it requires a different treatment and diet.   It surely is not a scientific model as viral and bacteria diseases are.   We are guinea pigs.   It is a very difficult idea to accept about oneself.   I feel quite cheated by my condition since my life is controlled by it.    I am constantly looking for God in my suffering.


----------



## Helene

My faith in God and knowing that He has a bigger plan for me is what gets me through the day sometimes. I am working on tailoring a diet that works for me, it's hard to put myself first sometimes when I have little ones depending on me...I'm worthless when I'm sick and tired though. It's a tough balance, not that I need to tell you that!


----------



## magy35

This is a great support group. I couldn't find the subscribe button so am replying to join in the discussion. Again, I can't express how meaningful this forum has been in providing me support. I was just in the hospital for 17 days and my weight has dropped to its lowest at 95 lbs. While in the hospital, I was started on 90mg IV prednisone and was discharged on a dose of 60 mg. As a result, my appetite is raging and I am finally starting to put on some weight. It is nice to have an appetite again!  
Maggie


----------



## duh panda

It's been a long struggle but after tossing remicade into the equation with prednisone and mtx seeing consistent gains (about 1lb a month) and holding my lowest acceptable weight for first time in over 2 years. So nice to not be feeling like a complete stick figure right now or have everything so sore that gentle hugs were unbearable. Hope this weeks finding you all well and seeing progression on the diet/ weight front!


----------



## ColossalBD

Hi, I was wondering if anyone knew easy ways to gain weight, I've been struggling ever since I was diagnosed with crohns, I'm a 16 year old male and way under 86 pounds,  and it's slowly been dropping, I'm lactose intolerant so I can't have any dairy, or else I get major cramps and diarrhea. I'm a pretty picky eater all I have all day is, really just crackers and cereal (with lactose free milk) plus with low iron it's hard to go anywhere, I've been out of school for over a year and I need to get back to my normal self so if anyone knows any diets to make me gain weight, it would be very helpful thanks!

-Andrew


----------



## InstantCoffee

ColossalBD said:


> Hi, I was wondering if anyone knew easy ways to gain weight, I've been struggling ever since I was diagnosed with crohns, I'm a 16 year old male and way under 86 pounds,  and it's slowly been dropping, I'm lactose intolerant so I can't have any dairy, or else I get major cramps and diarrhea. I'm a pretty picky eater all I have all day is, really just crackers and cereal (with lactose free milk) plus with low iron it's hard to go anywhere, I've been out of school for over a year and I need to get back to my normal self so if anyone knows any diets to make me gain weight, it would be very helpful thanks!
> 
> -Andrew


Reduce intake of sugar / sweets and buy a fiber supplement and your diarrhea will most likely clear up. 

I use this 
http://www.renewlife.com/fiber-supp...zFmxyY3p6-AQjZsGjQDgNvVv3DFoYx4bEIxoCFnPw_wcB

You can also try psyllium.  

Add safflower and coconut oil into your diet. 

Crohn's dieting is highly subjective but I believe this should help based on the most common cause of crohn's diarrhea.


----------



## my little penguin

Ds is 11
Was dx at age 7
Peptamen jr is ok for lactose intolerance 
They have an adult version peptamen
Your GI can write a script 
It semi elemental so only takes a few inches of healthy intestine to digest it .


He drinks them in addition to food
Helped him gain close to 47 lbs in 4 years.
He was 50 lbs at dx after not gaining for 2 years
He is now 97 lbs .

Good luck


----------



## Gail Jothen

I am lactose intolerant and peptamen caused me pain  ( I am 70 years old).   I make my own smoothies from spinach,  rice bran powder,   water, a little oil, and 1/2 banana.  But I have not  stablized with this disease and most of the time almost ALL food bothers me.  Obviously I am unable to put weight on and am really,  really skinny.   And no energy to buy new clothes....but I still have more clothes than most of the world,  I'm sure.


----------



## InstantCoffee

JeffBee said:


> Gail, I bought this Orgain Organic Protein Powder today and there is no dairy.  Ingredients look very good, but the stevia has such a sweet after taste that I may return it.  They said I could get full credit if I used up to half the product.  Tomorrow I will be cutting it with hemp powder to see if that helps on the sweetness.  But look it up, it's ingredients are very good and it has a higher protein content than hemp powder.


Inulin is a prebiotic fiber, it's likely to cause gas because of this. It may go away in time or it may not, hard to say, but I'd suggest experimenting with something cheaper that contains inulin first. Some Stevia does. 

Oddly I bought true athlete unflavored and it was fine, but when I bought natural chocolate flavored I had issues with it. 

The ON chocolate and vanilla seem okay. I haven't tried their natural flavors yet.


----------



## Gail Jothen

InstantCoffee:    my organic store carries Orgain organic nutritional shake which has milk,  but also carries Orgain veggie shake which is diary free, but they were out of this when I went there yesterday.   Just have to wait.   meanwhile,  I drink my smoothies made with rice bran powder, but I always appreciate ready made!  Yes,  inulin is off the FODMAP diet....bananas have it so I can eat only 1/2 a banana.  Thanks for the info.  I haven't gained weight but haven't lost any either.   I start Entyvio in 20 days....


----------



## drewpalermo

Ok guys, since I last posted in this thread (July 2015), I've been able to gain 20 pounds or so.  Now I'm at a normal BMI, and I really have to give credit to the ox bile and pancreatin supplements I include with almost every meal to help break down the fat, carbs, and protein.  

They're digestive supplements (animal derived), and I didn't have to eat any processed crap to get there.  I cooked the majority of my meals, with a little bit of almond butter every other day usually, some animal protein, and LOTS of cooked vegetables.  I also don't shy away from a tablespoon (give or take) of duck fat/ grass fed butter etc.


----------



## JeffBee

Thanks for the update Drew.  I need to add another 15 or 20 lbs as well.  My small intestine has been shortened quite a bit after 2 surgeries and the older I get the less I absorb through my small intestine.  Do you have your full length of intestine?  Are there any particular brands of enzymes that you have found that work better than others?
Thanks, Jeff


----------



## drewpalermo

JeffBee said:


> Thanks for the update Drew.  I need to add another 15 or 20 lbs as well.  My small intestine has been shortened quite a bit after 2 surgeries and the older I get the less I absorb through my small intestine.  Do you have your full length of intestine?  Are there any particular brands of enzymes that you have found that work better than others?
> Thanks, Jeff


Hi Jeff, hope you're doing well.  Luckily I have not had any part of my intestine removed.  The two brands I use are Source Naturals and Nutricology.  I took a picture of them on my blog here: ...

I almost always take about half of a pancreatin capsule and half of an ox bile capsule with each meal, especially if I'm eating animal protein.  I don't remember the last time I had a painful stomach ache.

Drew


----------



## paul090

Thanks for this thread I'm going to have a good Reed though, I'm so sick of being underweight, thanks to my latest flair I've dropped a few stones, legs have gone back to being really skinny.
Good luck to everyone


----------



## dchad57

Hello Everyone, I noticed there haven't been any posts for awhile, I'm hoping I can get some feedback and advice. I have had Crohn's since 1989 I have been on EVERY medicine there is. After my recent flare I have started Entyvio I go for my 3rd infusion on 3/9 I dropped to 85 lbs in Dec. and was hospitalized for 5 days. An NG Enteral feeding tube was inserted and I was sent home with it for 6 weeks (removed 2/9) I did great and gained 20 lbs. I have been maintaining at 102 lbs. Well this morning I get on the scale and dropped to 99 lbs. I eat the best I can and have several boosts a day but as you all know who wants to eat when it causes pain and diarrhea.
My question to anyone is for advice for nutritional help with gaining weight, shakes, smoothies whatever has worked for anyone else. I CAN'T have CORN (in any form) non gmo only please. I can't digest fruits & veggies that's why I say smoothies & shakes. Thanks in advance Donna


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## crohns4ever

Has anyone tried a gluten free high protein diet, diet dude placed me on it when I was recently in the hospital for 14 days. Been gaining weight like crazy..


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## crohns4ever

Just wanted to know if anyone had good or bad experience with a gluten free diet with crohns..


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## mellyag

I lost weight quickly, 37 pounds (more than 16 kg) in 2 months. I was sent to a psychiatric hospital to learn to think positive! I also had lots of pain. I tried various helps (naturopath, acupuncture etc.) but after 4 years of losing more weight and being depressed, I had a pill cam and the (new) doctor found 9 ulcers in my upper intestine which can be found only by a pill cam. Other tests do not see or go to that area. I am still on anti anxiety medicine from the psychiatric hospital and would love to get off them as I think they dry out my body too much, including my stomach, which is not healthy for digestion.
I guess this is why doctors "practice" medicine.


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