Our New Diet Journey

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

Joined
May 30, 2012
Messages
746
My son's Crohns has been flared since last fall. We started Remi and Pred in February. As soon as the Pred ended, his SEd and CRP went right back up. That is when we started seeing a Wellness Dr. We found him through my Father in law who had great success with his migraines.

We aren't gullible people. I question and research everything, so this has been a struggle for me. Some of the methods are "out there" for me, but I hate all the medicines and know people personally who have benefited from this Dr. So I have been open to giving this a shot.

We have eliminated corn (including cornstarch, corn syrup, cornmeal), wheat, sugar, and dairy (except for lactaid milk sparingly). I won't lie, the first month was :angry-banghead: (yes, that sums it up pretty well!) But, we are getting the hang of food preparation and my son has gotten very good at reading labels. Ryan is also on several herbal supplements that aid in healing the gut and repairing the mucosa. It's expensive, time-consuming, and the list goes on....

But, we are off Pred and Ryan feels better, not perfect, but better than the last time he came off Pred. We went to the GI this week and his CRP and SED are still high. But you can't tell it by looking at him. He feels okay, he's eating, and right now, not much in the way of symptoms. We are still on the Remi and the GI wants us to start Methotrexate too because of the bloodwork. We'll see about that one.... But we are keeping up with the diet for sure right now.
 
Great idea about starting this thread.:wink:

Now let me STATE where I stand on natural supplements vs. medicines.

I love natural anything. I try to cook that way and live that way. I'm not saying were supermarket free but I try to buy organic when we can afford it. My family and I have a doctor that Patrice holistic medicine when the situation presents it's self. However, he will give out reg. meds when it needed. That's what I like about him.
Grace has been treated all her life with vitamins and probiotics.
However, given her current health situation, that's not working.
I would never want to WILLING put he life in danger by
not treating possible crohn's or UC.
I think it's wonderful the your son is getting some kind of relief
from his treatment.
I hope Grace will have the same.
Keep up the good work mom.:medal1:

Oh, have you checked possible problems with certain types of soy.


Farmwife:soledance:
 
Last edited:
My daughter has been solidly in remission for what will be 6 years next month. She has gradually made changes to her diet in the last 18 months - 2 years. Vegetarian...vegan...organic whenever possible...and now very little refined sugar in her diet. She did recently try a full raw vegan diet bit was unable to maintain her weight on it.

She looks well, she feels well and says she has bucket loads of energy. Of course it is difficult to say what impact her diet is having on her disease as she is already in remission but it would be wonderful to think it will last lifetime! :ybiggrin:

As long as you stay honest and objective with what you see in front of you and read in test results and are prepared to change tack if need be then it is certainly worth a go! Good luck!

Dusty. xxx
 
Farmwife,

We love probiotics also. They make a huge difference for all of us. Ryan is taking VSL3 right now as ordered by the GI Dr. We never noticed a problem with soy, but I still don't let him have any. I don't like the idea of the estrogen in soy or the fact that soy is sometimes altered genetically. He has almond milk instead and loves it.

I am jealous that you have 1 Dr that does both. We have 2 Drs and it feels like tug of war sometimes...trying to balance the meds, the diet, supplements, etc...But we just have to mix the 2 and see how it comes out.

We are still taking Remi and talked to the GI again today about the Methotrexate. I won't take any risks with Ryan by avoiding meds, but would love to see him be in remission long term like Dusty's daughter. That's the goal with whatever combination works for Ryan!

Dusty,

That is amazing that your daughter has been in remission for 6 years! I don't know if the diet will gain remission for Ryan, but I know he has more energy and color than he has had in a long time and feels great! Hopefully, remission will come then the diet will help him soar!
 
Thanks jm. :)

When I mentioned in another post on the forum somewhere about Sarah cutting sugar out of her diet a member recommended I read this book...

http://www.amazon.com/Reaching-Answers-Crohns-Disease-Kalichman/dp/1414111762

...I did purchase the book. It didn't take long to read, a couple of hours maybe?? What this lady went through with her daughter and the conclusions she drew from her research were interesting to read. I did purchase the type of probiotic that was the author was using for her daughter, Cuturelle Lactobacillus GG, and Sarah has now started taking them.

I wish you all the luck in the world with your journey!

Dusty. xxx
 
As an Amazon Associate we earn from qualifying purchases.
I will have to get this book and read it! I have already read Breaking the Vicious Cycle. But this one looks interesting. Added it to my amazon cart! Thanks!
 
A very interesting thread (as I just finish my lemon balm tea to calm my nerves after a stressful day!!). I too am keen to avoid medications as much as possible (although obviously I appreciate they certainly have their uses). I think it is great that your boy is doing well - truly wonderful!
And good to know that others have also tried some alternative or diet related changes that have helped them - After our next appointment I think I may start to at least look into doing some similar changes.
 
Mmmm, lemon balm tea...I should try that tonight! Although I am much more in the mood for a Mom's night out painting at Sips and Strokes! The tea is much more likely to happen :)

Suzysu- There are some good books and websites out there that talk about inflammatory foods and food additives. The websites are where I started reading info. Even though fighting the inflammation is what we want to do, it ends up being like a Paleo or Specific Carb Diet. I'm a newbie at it still, but learning every day. I never thought I'd be cooking with other flours and shopping at the "Health food store" instead of the grocery, but ya do what ya gotta do....I miss cookies!

I kept trying to put off the Wellness Dr thinking I should wait until we had this thing "under control". I am glad we didn't wait. We are still not in remission, but I think the food changes have helped turn what could be a really bad situatioin into a mildly bad situation. We still have our moments, but I realize things are much better than they could be. I think we will still have to try the Methotrexate because bms and gas are still questionable, but maybe it won't be forever if we keep the diet up.

Talked to the GI, ENT, and anesthesia who all said it was okay to take metho now regardless of ear surgery. Don't guess I can put it off much longer.
 
Well, we broke down and started the Methotrexate today. R hasn't had stomache pain, loose stools or anything, but he's eating like a horse and his weight keeps fluctuating and he's gassy which means it's not getting under control. Hopefully this will put it in remission then we can keep it there with the diet. On the bright side, I've lost about 5 pounds eating this way :)
 
I think your on the right track, I fortunately am controlling the whole thing through food, and Ive been researching this for months now, and I know a few other people who have done this too. I agree, natural is always best. My doc said to me that if I took Mercaptopurine, I could eat anything, to me thats ludicrous. Its a digestive distorder, so adapting the diet is key. My blood inflammatory markers were 130 at one point, where the norm is 5. I was so anemic it was crazy. Even before I started taking meds I brought down my blood inflammatory markers to 87. My point is that food choice is critical, and it does take perseverence and determination. But after a while youll feel healthier for it. I eat probiotic yoghurt every day with manuka honey UMF 12. The alkaline diet for me was key in bringing down my uric acid. Especially after all the meds, hardcore detox is require. Youll be amazed at what the human body is capable of. Dont wait for docs opinion, they dont always know best. There is so much useful information online, just be weary of unriable sources of information.

I wish you the bext of luck xx
 
Good luck jm! I hope the metho gets things back on track again and your boy is soon feeling better...:goodluck:

Dusty. xxx
 
Thanks Dusty, he had a restless night of tossing, but we seem to be doing fine today :).

HR 85,

I am so glad to know that the diet can work. We are definitely sticking with it. He says he feels better even though the bloodwork says otherwise. It is very healthy for all of us, why quit? I guess my hope is to get to remission with the meds, then see if we can get off of them and control with the diet. Inflammation can be so damaging, I just want it down quickly. I also want to give him some knowledge that he can use to control it when he is grown. He's is almost 15....I won't always be the one deciding what to do. He also takes a probiotic and digestive enzymes, fish oil, and multivitamin.

Our dr said the same thing about food. I also feel it is crazy that the Drs don't address diet. Diet may not help everyone, but it can't hurt to try it before or in conjunction with meds.
 
It's great to read about the diets that people are trying and that help keep symptoms at bay. This is probably going to sound stupid but I am alway nervous about adding things like probiotics, manuka honey, etc, etc, because I am so terrified that something would make Andrew worse. At the moment he has no symptoms apart from a peri-anal abcess/fistula so I am worried that if I make changes to his stomach flora then he may develop symptoms he doesn't have now. This disease is sooo confusing! :( Also with his tummy being fine, I am just letting him eat whatever he wants (within reason :lol:) as he has so much to deal with just now with all the hospital appointments and blood tests, etc, I don't have the heart to restrict anything apart from choc/sweets.
 
I just posted this to someone else, and I hope this helps.. don't shoot me if it doesnt just putting out there that these are a few things i read up online and implemented, and worked for me, what is prioritising alkaline over acid, and getting my head round the ph levels of foods.

To bring down my blood inflammatory markers while waiting for treatment, all i had was vegetable soup with pearl barley, and no stock - full of MSG. Other key foods included bananas (good for the stomach lining), manuka honey (UMF 10+) which is a natural anti-inflammatory and prohibits the growth of h-pylori - a bacteria commonly found in chrones, and oats. The only meat I had was chicken, boiled or roasted. At the start i couldnt handle any dairy either, so id be careful about dairy, if so, only low fat probiotic is good. I cut out all salt - this aggrevated my ulcers, spices too, and anything fried. All red meats are also very acidic especially beef. Try and have as much greens, and grains - quinoa is good and has lots of amino acids. At first, also stay off all fruit juices and citrus fruits.

I then started reading about uric acid, I just gathered on my own that from all the bile I was producing / vomiting, my body ph was incredibly acidic and I needed to alkalanise this. So i started to research foods which were alkaline and started reading into this philosophy quite carefully. I also have psoriasis which flared up, more than I have ever seen. Then one day it all clicked, It is an auto-immune disease and i have a leaky gut. The more acidic the foods I eat, the more uric acid I am producing. I then realised that the mercaptopurine (immuno-suppresant) which is designed to over-ride anything I eat creates an excessively high amount of uric acid in the body, which made me feel so tired - the equivalent of going into mcdonalds and eating cheeseburgers all day. Because whatever you eat, your stomach will need to work overtime to digest - the more acidic the food, the more uric acid will be released into the blood stream when trying to break down these proteins.

My doctor was very good, but I dont know why he would say to me - here - take this immuno suppresant and you can eat anything. To me thats ludicrous. Being able to eat anything with a digestive problem?

I also have psoriasis, and I find it so ironic that this is what saved my life. It wasnt till I started taking mercaptopurine that my skin got really bad, I read about psoriasis like a maniac to get it under control untill i realised its all connected. So researching this helped too. I have a limited palette now, but im being more creative with what i can have, and realised for the first time in my life - less is definitely more. Here in an idea of what i do and dont eat:

Things I can eat:

Mineral Water with Lemon / Lime
Herbal Tea / Chamomile / oolong / elm tea
Porridge with water
Soya milk (only drink by itself)
Plain low fat probiotic yoghurt
Fruit – Grapes, Cherries, Mangoes, Pears, Apples, Bananas
Veg, Carrots, Celery, Parsley, Spinach, Raw onion, Romaine lettuce, Sweet potatoes, Asparagus, Broccoli, cucumbers, Fennel, Leeks, Courgettes, coriander, artichokes, soybeans, lentils, peas, brussel sprouts, cauliflower, chicory, pumpkin. Beets, turnips, avocados, squash
Meat – Chicken (preferably breast), Lamb, Turkey
Cheese – Only Feta cheese
Fish – Salmon, Sardines, Mackarel, Tuna (no fried fish) - i never buy any tinned stuff any more, only from the fishmonger. Yup - i now know how to cuts off a fish head and not squirm.
Carbs – Brown rice, wholewheat pasta, plain unsalted rice cakes, rye bread (only type of bread i believe is good)
Dairy – Soy milk, almond milk, low fat crème cheese, plain yoghurt, unsalted butter, eggs
Snacks – Almonds, Manuka Honey (normal honey is ok too), natural jams, olives
Lentils
Oils – Olive oil (only olive oil and sesame oil are alkaline, stay away from vegetable oils, it makes a huge difference).
Other – Sesame seeds, sunflower seeds, flax seed oil, sunflower seeds, evening primrose.

Things i cant eat:

Do not mix citrus and dairy; or citrus and wholewheat as this results in a bad reaction.
All white flour products
No fizzy drinks
No Cane sugar
No booze
No White potatoes
No paprika
No Tomatoes
No peppers
No shellfish (lobster, shrimp, clams, oysters, crabs, mussels)
No anchovies
No breaded or buttered fish
No beef or ANY processed meat
Whole milk
NO white bread
No strawberries
No sauces made from tomatoes
Butter
Shellfish
Hot spices
No white rice
No artificial sweeteners
No margarine
No pastry, sweets or cakes
No cabbage

Diuretics: Make sure you try and pass as much urine as possible at first. Parsley and ginger are great blood cleansers.

I also read around digestion times to make sure that I ate small and often, than that when food was going into my stomach, it was relatively free. So I also did some reading around digestion times for different foods. I also read around food combinations - not all foods react well together due to their composition, e.g. citrus and dairy is bad, and citrus and wheat are bad.

If you can handle dairy, one of my favourite things that I have is a milkshake I made up. I would invest if two bits of kitchen equipment also - A blender for making soups, and a cocktail shaker for making milkshakes and smoothies. I have what i cool my 'supershake' every morning. Mix the following into a cocktail shaker and shake vigorously:

2-3 heaped tablespoons of flaxmeal (very high in fibre)
a teaspoon of manuka honey (umf 10+, the higher the better)
2 cups of soy / almond milk
a tablespoon of probiotic yoghurt (I like using vanilla flavoured yoghurt)
4 big ice cubes

Take this on an empty stomach and dont eat anything else for 1-2 hours.

I drink a lot of tea also - lemon and ginger (only have lemon if you can handle it), dandelion and milk thistle are also good, and parsely is a good diuretic too. I have a teapot with a filter in it, so i try and make as many as poss without tea bags - essentially its flavoured water.

Try to stay away from all processed foods. Its hard but once all the toxins are flushed out, you dont want to keep putting it back in. Try to watch your salt intake too.

I hope this helps and ill add anything else I can think off. Pls remember this is only what worked for me and may not work for everyone.

Much love

Hx
 
What is manuka honey ? I've heard about. I just want to know why it's so different then the honey off my farm?

Thanks,
Farmwife
 
Its a type of unprocessed honey which has a property which can control inflammation, its the only honey they have scientifically tested which reduces this condition. It is raw and comes in different UMF (uniques manuka factor) factors, wich 10+ being the min to make a different. Most health food shops will have descent ones. The higher thew factor the thicker and more opaque it is.

Hope this helps..
 
H - you have done so much research - thank you for sharing it, I am starting to look into special diets for my son and feel a bit overwhelmed at the moment! - interesting what you say about bananas - my son loves them and would eat way more than I give him given the chance!! - they say the body seeks out what it needs!
Farmwife - manuka honey is a special type of honey produced in New Zealand the bees make it using nectar from the manuka tree - it has lots of benefits and is used for a wide variety of medical problems - it is however very expensive :(
 
You're right, I went through a tonne of bananas - they are great healers. I made my fair share of errors too. When the steroids kicked in at first, my appetite was through the roof. I had barely eaten a descent filling meal in 2 months, so that when i started on a high dose of prednisolone, I could eat for christmas. Oh yes, my body was craving the calories I couldnt have in a long long time. IM quite quite small weighing at 60 kg, but i could eat from morning till night for weeks. Even if the body is craving calories, I would advise to limit intake of salt as it can lead to water retention, and you want to try and pass through the toxins through urine. Dont let him eat just anything even if he can keep it down, a couple of treat days to get the calories back up, although all the acid in the blood would have been depleting all the good alkaline minerals in the body. Do let me know if you find any magic tricks :)
 
I am going to speak to his GI and ask for a referral to a dietician or nutritionalist or whatever! - he is not yet 2 and I am a bit nervous about doing anything very restrictive - does anyone on here have any experience with diet modification and toddlers?
 
HR,

Our diets are not quite the same, but very similar. It's limiting, but we are getting adventurous with it also. Biggest difference for us is we don't eat bananas or any wheat. Also, we do almond milk, but don't eat the nuts. Like you said, you have to experiment and find what works for you. I am sure the diet will evolve as time goes by.

Suzysu,

With a 2 yr old, I would start with limiting sugar intake and trying to do whole grain bread/pasta/brown rice, no sodas, limit corn and minimal processed foods. That may help as well as using lactaid milk. Many crohn's sufferers are lactose intolerant. Lots of fruits and veggies, fresh or frozen over canned. Push your dr to help you find a GOOD nutritionist or look for one on your own. Even our GI's nutritionist told us to let Ryan have anything he wanted as long as it had calories. They were just concerned about weight and putting him on meds. We finally found a wellness/holistic Dr who has helped us with diet. You can google, inflammation diet, GAPS diet, SCD, but some parts of the diet are too strict for a 2 yr old. Besides you said he was doing fairly well, so I would just make some small healthy changes.
 
Thanks j, I have googled the SCD diet and was a bit scared as it is very restrictive to start with and i read the forums on here and a lot of people had bad diarrhoea the first few weeks Freddy already has rotten diarrhoea Im not sure I could bear making it worse!! I also have a 3 year old and a 5 year old - no way am I cooking something different for everyone so we will have to try a diet that works for us all!!!! I will google the inflamation diet and the GAP's diet.
I thought we all had a healthy diet with minimal processed stuff but looking at it a bit more I realise we do still eat some processed things so I am going to cut those out. Luckely he is really not bothered about sugary things and loves fruit!!!! they dont get soda's or fruit juices and have just milk or water, he really really loves his milk and would drink tonnes of it if I let him so I am wondering if it would be worth trying lactaid milk. Oddly Grapes seem to really set him off - he accidently ate some at a birthday party on Saturday and we are only just recovering!!!!
Thank you so much for the advice - I think changing our diet will help the whole family and not just Freddy! And you are right in what you say to just make little changes at first - rather than going the whole hog so to speak!
 
Suzysu,

Grapes set us off too...it's the peel, and who wants to peel grapes! I thought we ate pretty well too until I started reading boxes and reading up on inflammation. Sounds like you are already doing lots of good things though. We arent really following any one of those plans, I just read up on all and incorporated some things from each that work for us. Mostly just trying to eliminate things that cause inflammation (since it is the monster) and add things that are anti-inflammatory...and of course, eliminate anything that causes problems. And an added plus is that I seem to be able to maintain my weight without trying too hard. Best of luck! Keep me posted on how it goes!
 
:eek:Phew! I think my head may explode!!
can you recommend any books or websites with good recipie ideas that incorporate as many of the anti-inflammatory foods as possible? or what type of things do you cook? (I am a rubbish cook so easy suggestions please!!!!).
Hopefully I will have time to visit a health food shop tomorrow to start us on our own diet journey!!!!:lol2:
 
I am 100 years late on this thread. Claire was diagnosed right at her 6th birthday. We found "What to Eat with IBD" by Tracy Dallessandro to be very common sense and helpful. She's a dietician that was diagnosed with IBD. Our peds GI recommended it at diagnosis.

Ultimately you just need to find what's best for your family.

Hugs,

J.
 
Suzysu,

Best to take whatever you do slowly. What diet works will be different for everybody. The best thing our Dr told us was to change a little at a time because we are trying to make lifestyle changes, not a temporary change. He started us with breakfast, make it healthy and let everything else stay the same. Then after a week or two, add another meal or snacks. That way you only have to concentrate on 1 meal at a time and the changes are gradual.

I love to look at www.wellfedhomestead.com and www.wholefoodsmarket.com
The book we have loved is Eating Right for a Bad Gut.

I hope you find a plan that works for you. Take it slow and won't be as overwhelming.
 
Last edited:
OK - so today I went on a rare trip into town to go to the health food shop and spent a load of money!! This evening I gave Freddy what I plan to do for breakfast - natural Yoghurt, flaxmeal, manuka honey, blueberries, raspberries and strawberries - he wolfed it down - but since he ate it he has done a few mega disgusting burps and brought up a little - but seems quite happy so I am going to stick with it a few days. I also managed to find a multi vit without iron in it (as he takes a separate supplement for that), and (after a great deal of searching round different chemists) found a probiotic that he can have - a productive day!!!! I have also been researching some recipies that we can use for healthier meals. Hopefully we will all start to see the benefits soon!!!!
 
Suzysu, I totally understand. A trip to the health food store can be a shocker! $50 and walk out with one small bag! Wow!

That sounds like a great breakfast to me! The burps may be from all the fruit. My sondidn't do too well with that. But get those probiotics going and hopefully that will help. they have helped us alot. Maybe a digestive enzyme would help. Looking forward to hearing about what foods/recipes work for you!
 
The husband was very very cross when he saw the multivits and the probiotic - but its for Freddy's health and I don't see how he can be getting much through what he eats at the moment. - I think maybe the manuka honey was a step too far - may have to cut that out next month!!
 
:ybatty: MEN! But that's another forum LOL

You are right, these things are for his health. I have made some questionable investments in supplements and food. But when I see my son improve, it makes it all worth it. My husband encouraged the diet changes, so I warned him up front that there would be some cost to it while I was learning what I was doing. I am still learning, but I think it has begun to level out because we don't purchase alot of processed foods. Continued good luck!
 
Yes my hubby does the food shopping every saturday morning as I am apparently useless at it (don't get the right deals or compare prices enough etc) - I write the shopping list for him so tomorrows could be interesting!!!!!!!!
 
You guys are inspiring me.

I am so incredibly busy that I never have time to spend in the kitchen or pouring over books and labels but now that O is doing better and we have taken her off ALL food I want to only add back in the best. I am getting the books mentioned and going to try my best.

Warning: lots of questions coming your way!
 
:D Yay Crohnsinct! :D

Glad you are joining us. We will all learn together! What a crazy journey this is! I am happy that O is doing better! Let us know if you find something that works well. We will have our own study going on here!

A little setback for us the past few days. R was eating okay, but lost a few pounds. He is seriously eating like a teen, but it is not sticking! We decided to cheat a bit today and he had some frozen yogurt. Even though he took a lactaid pill, it did not sit well AT ALL :stinks: He has eaten at this yogurt place before with no issues, so I am really disappointed. He also had some pork today, so we will knock that out too for a few days. My instinct is to do a low residue diet for a few days, but that would require some serious cheating! Gotta do some thinking about what would make his stomach better and not set us back.

To complicate the situation even more, he has to have ear surgery a week from Monday. I really want him to go into the surgery at the highest weight possible. We may have to do a little creative fudging on the diet to accomplish that goal, especially if his tummy doesn't get better. It's days like this that make me want to say :facepalm: poo on the diet, but I know the basics are good. It's a work in progress!
 
I am no expert in this and maybe you have already tried it (I forget!!) but others speak very highly of some of the enteral nutrition shakes (not sure if thats what you call them). I mean rather than give him things that you had been trying to avoid maybe add in a few shakes a day to increase calories, or even try without food and just the shakes for a couple of days to give his GIT a rest?
Like I said I am really not an expert and others could give much better advice!
I hope he feels a bit better soon - sending you all hugs xxxx
 
OK - this is ALOT harder than I thought!! although we don't eat much processed stuff and the meals are easy to change we do have treats for the kids (flapjacks, shortbread, that kind of thing). My 2 older ones are ALWAYS hungry and my 5 year old just won't touch fruit!! Also I think there is a limit as to how much fruit is tolerated. - so I need suggestions for healthy snacks - we tried quiche - was ok but it doesn't really work 'on the go' if you know what I mean!! - any other ideas??
J - How's your son doing? any better today?
 
Ryan seems better this morning. Hopefully it was just the yogurt and I'm pretty sure that's out of his system. I may have to try some of the shakes, but those caused us problems before (dairy) so I will have to read labels. Wish there was one that wasnt dairy in the stores.

Mine gets hungry all the time too. We make the blueberry muffins and carrot raisin muffins on www.wellfedhomestead.com. My son and husband love them. I am big on "texture" so I notice it, but they don't. Sometimes I will just make Ryan eat some leftovers for a snack and we make the fruit into smoothies so its easier to tolerate. It is very hard to have snacks for the road. I usually pack a lunchbox...that's how hungry he gets. Homemade granola is pretty easy and travels. I never realized how much we relied on processed food, especially snacks. I am looking to get something that will slice veggies into thin slices and bake them to make veggie chips!

So your kids don't go into shock:eek2:, you may have to make your usual shortbread treats and just play with using whole wheat flours and using raw organic sugar instead of refined white sugar. That's what my sister-in-law has done. They are kids, we still want them to have treats.

I like www.glutenfreecookingschool.com. Even if you aren't going gluten free, she has a lot of information about how each ingredient affects the baking process. So if you want to play with recipes, you can learn what changes to make.

Take it slow...your kids may go on strike!
 
Do you have a recipe for homemade granola?
I would love it. I've made 3 granola recipes but not what I real what yet.
I'm always on the look out for more.:)

Farmwife
 
This is my sister-in-law's basic recipe. I am not 100% happy with it yet and I am still playing with it. I usually add cinnamon, but no sugar. Also, I am playing with using extra virgin olive oil because it is healthier. If you come up with a winner, let me know. You can also add flax and wheat germ if G's tummy can tolerate it.

5 cups Quaker old fashioned oats
1/4 cup vegetable oil
1/4 cup honey

Stir all ingredients in large mixing bowl. Hint: measure oil first, and then honey in same measuring cup - it will come out easier.
Spread in shallow cookie sheet and bake at 200 degrees for 30 minutes. Take out and add nuts, cocunut, if you like (and I sprinkle mine with cinnamon/sugar), stir around, and put back in oven for 30 more minutes. Let cool completely before storage or it might stay too sticky.
 
I think Ensure and Boost both make a "clear" fruit flavored version of their products. Also there was some discussion of Breeze...forget off hand who the maker of that is.

As for the regular Ensure and Boost...the third ingredient is high fructose corn syrup and I can't remember but I think you are maybe off corn????

Kids go into shock...LMAO

It is a balancing act. I don't think I can go 100% right away and O still really needs to put on weight and burns a gazillion calories with her sports. Unfortunately, healthy eating is also pretty low in calories. She used to be the best eater...all veggies, fruit, salad all the time but was wasting away. We had to add some "junk" to get some weight on. I think my compromise this time will be the shakes. All healthy except for one or two shakes a day.

Love the veggie chip idea! Let me know how it goes. Definitely going to look up those muffin recipes...right after I make 5 dozen m&m cookies to use up all my refined sugar, flour, etc....
 
There are a lot of different EN shakes- The difference in my kiddo is amazing ( 10 lbs to be exact).

YOur GI can give a script and then they can be covered under your durable medical equipment clause of your insurance since they can be pricey.

We use pep amen jr with prebio ( elemental - does contain whey but the protein is not the same as milk - it's all broken down so only the first few inches of the small bowel are needed to absorb the nutrients.) A good thing in IBD kids. The whey only affects those with milk allergy (IgE type). You can call nestle directly about lactose intolerance. This is also used for kiddos with short bowel syndrome.

There is also vionex, elecare, and neocate (E028 splash)- amino acid based- not intake protein and no milk. Again sole nutrition for kiddos who can not tolerate any in tack proteins (EGID disorders).

IF you are not avoiding soy (we are) then there is bright beginnings, but most of the protein is not broken down so easier than food but not as easy as peptamen or elecare.

My son drinks his orally. SOme kiddos need an NG tube. After the first week- lots of tears and plugging noses with a straw he can now chug one (8.75 oz) in about 3 minutes. It is all in what you get used too.
Neocate will send you samples or you can get some from your GI.

You can order directly from the company as well and don't need a script but its cheaper through the DME.

Here are the links to abbotts version, nestle, and neocate

https://www.neocate.com/shop/c-6-nutricia-category.aspx

http://abbottnutrition.com/Child/Childrens-Formula.aspx

http://www.nestlenutritionstore.com...n/specialized-nutrition?catpath=pediatric.2.2

ALso there are flavor packets to buy and add to the neonate Jr. There is even a choc version.


Hope that helps

All of our kids have enough to worry about- weight /nutrients should not be one of them.
 
:rof: M & M cookies!! I hate to say that after eating those, you will be disappointed in the muffins!

I agree with not going all out at first, especially when they need calories. I actually have been telling R he can cheat some, but his personality is t-total! He thinks cheating is like breaking a law. I will practically have to sneak some cheats into his meals!

I will go look TODAY :eek:utahere:for those shakes! I forgot about that clear one!

Send me some cookies!
 
Just a word of caution some kiddos have more trouble with high fiber ingredients - such as whole wheat flours- there are plenty of alternative flours ( pea, tapioca, arrowroot, etc..)
Can you tell we had Food allergies for years :rof:

There are also a go to brand Enjoy life foods which is free of the top eight allergens- so it would eliminate most of what you need and still come in a pretty shelf stable package.

http://www.enjoylifefoods.com/#page=page-1

and IAN's
http://www.iansnaturalfoods.com/
 
WOW MLP! ..should have just waiting a few minutes and let you handle:)

I think I may try the more "broken down" formula your son uses. I know we all keep saying O just isn't drinking enough (although doc says it is a fine amount) and her blood all came back fine but I am still wondering if she drank one of the other formulas if she would gain. Was planning to ask doc if he called us back in but since blood is good probably won't see him for another month or two. I won't be able to get it covered since our script is for Boost/Ensure but since she is transitioning to regular food soon I think I can handle the cost of a couple of shakes a day.

Thanks for all the info!
 
You might want to call- our Gi just sent in a change order even though DS was on boost and viola pepatmen Jr was on my door and covered.
He drinks 3 a day so $179 /week and $800/month so it does add up fast.
 
j - Im so glad Ryan is a little better today - long may it continue!
I will be making your sister in laws 'Granola' (I had no idea what this was till I saw the recipie!!) tomorrow with the kids - they will enjoy making it - and especially enjoy licking out the mixing bowel!!
MLP and crohnsinct - I hope we never need EN but if we do I know who I' going to ask all about it!!
 
MLP,

You are right. We use coconut flour for the muffins and use bob's mill flour mix for other experiments. Not using any wheat at all right now.

Suzysu,

I just found this site that gives you the basics for making your own smoothie/shakes. I plan to go to GNC today to get some brown rice protein powder and get out the "bullet" to make a smoothie. I hope my picky child will make one that he loves!

http://www.healthylifetoolkit.com/weight-gain-shakes.html

My hormones must be on overload. Walked into his room to talk to him and looking at how thin he is, I had to leave for tearing up! Gonna get some calories in him today!
 
Hey, while I am here....any of your kids complain of eyesight blacking out for a few seconds when they get up from a sitting position? Thinking its deydrating from upset stomach...and he was complaining about being cold last night (we are in Alabama mind you where it is in the 90's).
 
I have no idea why his sight blocks out. Interesting.
I know Grace has eye sensitivity to the sun/light.
Hers seems to hurt or bother her for a few
moments but then it's gone.
Farmwife
 
Oh my gosh! Happens to O all the time...one time lost her sight completely for minutes...sat on the floor. Our doc blames dehydration. Keep up the fluids if it is still happening I would give a friendly FYI call to the doc.
 
J - are you sure its just his sight - I mean does he also feel a little dizzy when he stands up? there is some condition that causes a massive heart and blood pressure change when someone stands up - I noticed a few of the kids on here have it - it is part of the dysautonomia syndrome I think -

http://en.wikipedia.org/wiki/Postural_orthostatic_tachycardia_syndrome

Obviously I am not suggesting that he has it - just it seems to go hand in hand with some autoimmune diseases, and could make him dizzy and blackout for a tiny moment when he stands? Others will know more about it than me!

I feel for you nearly crying when you saw your little one, When Freddy was very poorly earlier this year and last year I avoided going places where there would be other kids his age as it made me so sad, and some of the other mum's comments were hard to deal with. In the end I had to force myself to take him places for his sake.

I don't think you are hormonal you are just having to deal with a heartbreaking situation - we can't stay strong 100% of the time - it's just not human. I am sending you a huge hug all the way from the UK! - You are doing a wonderful job - you should be so proud of yourself for doing all this extra research about diet, going to all the food shops, spending so much time and money on doing the best for Ryan. xxxxxxxxxxxxxxxx

Farmwife - Freddy is also very sensitive to light - I took him to the Dr today to get his ears checked in case that was what was causing his weird head pain thing - and I meant to ask her to check his eyes, but forgot - I am so cross with myself! I just get all nervous with Dr's (I had even written a list but was too scared to check it - idiot!!)

On a totally mundane note - can you make a smoothie without a smoothie maker? - all you need is a food processor or blender right??
 
Sorry I was writing at the same time as cronsinct! - maybe it is a dehydration thing - I was probably getting a bit carried away!!
PS - love the healthytoolkit site!!!!
 
Hey, while I am here....any of your kids complain of eyesight blacking out for a few seconds when they get up from a sitting position? Thinking its deydrating from upset stomach...and he was complaining about being cold last night (we are in Alabama mind you where it is in the 90's).

Where is your son's Crohn's located?

Is he regularly being tested for B12, Folate, Iron Stores and Vit D deficiency?

Dusty. xxx
 
Yeah there is that other thing Suzy mentions...Liv was checked out for it. In the end it was just her dehydration and malnutrition from Crohns:mad2:

Absent a stomach bug these kids can still get dehydrated. Our GI cautions that when inflammed they don't absorb all the fluid they need either. If O goes to school without her water she always comes home with stomach pain, dizzy and black dots etc. If his bug clears and he is still having black dots or dizzy I would mention it to doc.

Comments from moms?!! Oh my gosh, if I had a quarter for every time someone asked me if Olivia had an eating disorder!!!!!! Then there is the mom who constantly said, "come to my house I will fatten you up" As if I wasn't feeding my kid. The health teacher at school even had me called in to school because of her weight. I had to get a note from her doc that she was fine...little did we know...guilt creeping in.

Sister in laws granola? Did I miss something or is that posted elsewhere?

So sorry that you are so sad. It is so hard to have the effects of this disease stare you in the face like that. You are a great mom and doing a great job. He started Methotrexate this week or am I getting confused? Hopefully it will kick in and all that awesome food you are feeding him will get absorbed and he will take off like gangbusters. Hugs from CT:hug:
 
8 dozen M&M cookies! Really?! What kid on exclusive EN signs her mother up to bring cookies to fundraising event...couldn't she sign up for water or something a little less torturous for herself?

Well bright side when I start all that "healthy" cooking I probably won't get signed up for muffins for the bake sales? I will get the easy water job!
 
8 dozen M&M cookies-Bake sale-WOW:ywow:
We call that 2 days worth of snacks on the farm.:ybiggrin:
These farmers are thin as sticks but eat like horses.
And I eat half as much and still weigh too much!:frown:

:heart:Farmwife:heart:
 
Ah, nevermind SIL's granola recipe just popped up. Why is my computer so weird?

Thanks for the link to homestead site...from there I have been obsessing all day...raw milk? Has anyone tried it? There are all kinds of warnings about immune suppressed people not being advised to drink it but really?! Has anyone tried it? How risky do you think it is?

Doesn't it make sense that the increase in all these diseases and syndromes is due to our food and the highly processed nature of our diets?

O.K. slowing down as to not throw my family into shock.
 
The us gov. Makes it illegal to sell raw milk:frown:.
If their is a 'cow share' around you, you can buy some.
If this interested you or any one check also the healing power of goats milk.
Their in danger if you do not wash the containers properly. Wash them well and you will not have this problem.
Oh, go to a farmer that does thing as natural as possible.
If you what more info pm me!

Farmwife:rosette1:
 
Thanks Y'all! I am rolling over all the comments. My mood's much better! Thanks for the hugs and humor!

Okay, so I don't do the raw milk thing. Farmwife will laugh at me but I have a mental block about milk straight from the cow and brown eggs! Completely mental....I claim it! I do substitute almond, coconut milk or lactaid milk for recipes. Also, I live with 2 guys who could eat all day and lose weight. I hear "what can I eat" every hour. They are killing me cause I gain watching them eat!

Dusty - Ryan's crohns is the worst in the transverse colon with ulcers that were bleeding, some inflammation in rest of colon and terminal ileum. Those levels are not being checked, but we have bloodwork for CRP, SED, and HACA in a week and I will ask them to add that. Thanks!

Suzysu - I will do some reading on that syndrome. I hope that it is dehydration as you guys mentioned...I can try to fix that. He could be getting dizzy. He used to love rollercoasters and water rides. Since the crohn's he can hardly stand to ride in the boat and wouldn't dream of riding a coaster. He literally can't stand it! About the smoothies, I have a thing called a Bullet. It is pretty much like a personal blender.

Crohnsinct - We did start metho and the next dose is Monday. Hoping it kicks into gear soon! I really do believe that these illnesses are more prevalent because of all the food additives, processed stuff, overuse of corn and wheat, poor growing practices. I don't know how it could be proven but it's too much of a coincidence to ignore. Anybody ever read THE CHINA PROJECT?

You guys are all awesome! We deal with so much with the disease itself, the social and emotional problems it causes and comments by others who are too ignorant to understand. Sometimes, it's just too much. I am glad to be on here with you! I'd be in Heaven if I had some cookies :ybiggrin:
 
My daughter has the blood pressure condition I think the other are talking about. It called postural hypotension dx by neurologist. What happens is blood pressure drops on standing, gets dizzy, everything go black then faints. The dr was able make it occur in his rooms without the faint thank goodness.

What he did was take bloid pressure while sitting 85/40, had her lay down for 5 minutes 80/40 then had her stand up very quickly 65/40. The dr also advised they have between 3-6sec for the blood presure to,come up or a faint will occur.

Advise was to drink, lot of water. This blood pressure condition can be caused by low body weight.
 
Last edited:
Thanks Catherine! I will definitely have to push for an answer at the next appointment. I mentioned it to the Dr at our last visit, but he dismissed it. I will take this info to him and get him to pay attention. In the meantime we're going to work on that water and some calories.
 
Not to worry you because Sarah had faints while exercise we all had the following tests

Echocardiogram
12 lead ECG

All this testing was done in April of last year, a full 8 months before dx with crohn. As her weigh fell the faints and dizzyness occurred more often.

As her weight has come up and the anemia has started to improve they have stopped happening. I'm going to ask her to confirm this.
 
This will make you all laugh - granola made by 3 small children, in the oven, I hoovered up all the oats which were by now spread throughout the whole ground floor, 10 mins later - horrible buring smell from oven - I guess your temps were in Farenheit not Celcius!!!!!!!!!!!! No wonder porr Freddy is poorly if I can't even make granola without nearly burning the house down!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
 
Oh, poor Suzysu!:ywow: I wish I could tell you I wasn't laughing.:shifty:
Keep trying, you'll soon get the hang of it.:rosette1:
Once my hubby made grilled cheese sandwich and put the cheese on the OUTSIDE of the bread. :ybiggrin:I love that man!


:heart:Farmwife:heart:
 
UM - I am now at risk of causing people to have hernia's due to the laughing at me so much - but I thought granola was a type of flapjack, sticky biscuity type thing? My second attempt has not stuck together at all? It's like museli?
I don't think I will mention how useless I have recently been in the kitchen to the GI tomorrow or I think he will send me to cooking school - maybe Freddy is safer with what I was making him before trying to be healthy :(
 
Oh and your second batch is fine btw - granola IS like museli..not a flapjack or biscuit at all! See you are better than you give yourself credit for now go put that granola in some yummy probiotic yogurt and chow down!
 
:thumleft: Good job Suzysu on that second batch! Yes, it is like muesli. Now aren't you glad you tried again? You're a good sport to let the kiddos confetti the house with oats!

Man, I don't log in for a few hours and you guys are having a party without me. Sorry about the temps on the recipe. Yes, they are in Fahrenheit. I totally didn't think about the difference.

A chicken recipe experiment went well last night. We miss "shake and bake" chicken (breaded and oven-baked). I had some gluten free brown rice krispies in the pantry that nobody would eat. I put them through the food processor and added some spices and a tablespoon of brown rice flour. Dipped boneless chicken breasts in a almond milk/buttermilk powder mixture to wet and then in the "bread crumbs" that I made. Put a thin layer of olive oil in a 9 x 13 and baked it at 350 (F). It was yummy! Now I want to try this to make nuggets!
 
What's everyones thoughts on a sticky for diets and cooking for kids with IBD?

I know there is a separate forum on here that covers diet and cooking but I thought a sticky thread here in this forum specifically for kids due to the special challenges it presents. My thought is you could post recipes, links and/or any advice about diets that you have tried and the outcomes.

Your thoughts?

Dusty. :)

PS. Sorry JM for hijacking the thread!
 
Dusty - that is a great idea - as is obvious I need all the cooking help I can get!!
j - that chicken sounds good - I may try it (but will have to wait until the granola episode is wiped from my husbands mind!). xx
 
Dear Dusty, Moderator Extraordinaire! Is mind reading a prerequisite for your position cuz I was thinking the same thing.

Going to the whole foods market today...right after I go to the bank for the loan:)
 
Dusty...The sticky is a great idea! Go for it! We all have successful recipes (and flops) to share!

There definitely needs to be one for kids that is separate from the other one. We have to balance nutrition with taste that kids will eat. Not always an easy task with picky eaters! I have found that along with a sensitive stomach, my son has sensitive everything else....sensitive to tastes, how things touch him, what people say to him, loud noise.....man!
 
Thanks for the feedback, the sticky is done! :)

I will monitor activity in the thread and if there is a reasonable amount of posting being done I think I will ask David and Mike to consider making it a sub forum so that the finding and retrieval of information is easier.

Dusty. :)
 
Okay frustration setting in....:voodoo:

I am at the point of eating a batch of cookies!!! Ryan started getting worse on Friday, good day Saturday, but downhill from there. He came in at 4 today and said he was taking a nap and slept until 8:00 when Dad woke him up. Eating supper and complaining of stomach pain! GRRRRR!!! I have called the GI and spoke to nurse, but no call back...will probably go do bloodwork tomorrow and more than likely, the ear surgery scheduled Monday will be off again.

He is not necessarily sick enough to be in the hospital, but I am tired...I just may suggest it.

...and to top it all, I can't stress eat a batch of cookies 'cause my stomach hurts too! :voodoo: :voodoo:

Rant over......

Crohnsinct...I do like the voodoo!
 
jmk: ergh..so sorry about the set back. I hope they call back first thing tomorrow! I just made Oreo truffles (haha not one natural thing in them) for my senior's end of year party. I will have one for you. Keep us posted.
 
crohnsinct,

Have 2 for me...R went to bed with a fever and a rash! Dr's phone will be ringing in the a.m. ...about to get mental on him :voodoo:

Anybody ever seen a bumpy rash on neck/chest? looks like a plucked chicken, not red, just raised and tiny.....I suppose it could be acne, I mean he is almost 15. But it just appeared with all these other symptoms. Metho?
 
oh no jm, I am so sorry - I will be hoping that the Drs can come up with some answers soon and that your boy will soon start to improve xxxx
 
Catherine,

I don't believe it's chicken pox. He had the vaccine when he was 3. Also the rash is more like chicken skin....no redness, little tiny bumps on his face neck, and chest (can hardly see it, just feel it all over). Almost like acne or something. It just popped up all the sudden. It could be some other type of bug or an allergic reaction. He started taking methotrexate a week ago. Don't know if that's a side effect. He also had an upset stomach last night and had to take Bentyl.

It's just gotten so complicated that a talk with the GI and some bloodwork would make me feel better. They didn't call back yesterday. Just called again.....waiting ...
 
I hope you hear soon - and I hope they are able to suggest something - thinking of you guys xxxx
 
Keep calling!!!!
I hope it goes away. Keep us posted. I starting to take log of all these different things that are happening to our kids. So hopefully if Grace get on this stuff we'll be prepaired.


Farmwife
 
What has that big city done to you?????
You use to be so nice.
My kid is not covered in a painful rash you country girl hater.:ytongue:

Farmwife
 
I called again! Dr has not answered message. I have an order for bloodwork that the Dr gave me at last visit. I told them if they didn't call back, I was going to go the lab and get it myself. If they don't call today, we will be on the road to the GI office and lab tomorrow. Lab order was supposed to be for Monday, but it isn't dated, soooooo.....:devil:
 
Is rash still covering the same area or this there more. Maybe outline with something so know if more develops.
 
:ysmile: Great idea Catherine!

Finally got a call from the nurse and then the GI himself. We are going in tomorrow to do labs and see the Dr. He said come prepared for the possibility of staying. :ywow: Is it bad that I feel relieved that Ryan may have to go in the hospital? I am just ready for a solution.

Of course, all of this comes and Ryan feels okay today...go figure!
 
What a dilemma - definately worth staying in if the doc suggests it. It would be sods law that you wouldn't stay then he would get worse that night. Typical Ryan is feeling ok :ywow:. Good luck will be waiting to hear how you get on!
 
Oh no! I totally agree on the call and if you feel better having him stay then definitely let them admit him! I know you have a lot on your plate and will be processing a lot but when you get a chance please try to keep us posted. :ghug:

Sascot: I am guessing sod is murphy's cousin:ytongue:
 
HaHa...I had to stop and think about sod too!

Thanks Ladies! I will keep you posted, taking my tablet and laptop!

We are packed up and ready for whatever...as longs as we are on the road to recovery. We started looking back at Ryan's growth...in the past year he has grown 3.5 inches taller and LOST 2 pounds. That can't be healthy!

Dr is in trouble....I have you guys to back me up AND my husband made a folder of info and a spreadsheet (evil laugh)!
 
We just settled in for the night...been a long day. SED rate is 34, I forgot to ask what crp was. White cell up too. We will stay at least till tuesday and take IV solumedrol and antibiotics. Had a CT today and we will get those results in the morning. GI got frustrated with us questioning everything. Wants to stay the course. I think we will be doing exclusive EN for 6 weeks. Haven't told Ryan that yet. I am exhausted ,but I will probably sleep better knowing something is getting done.
 
Sounds like you're where you need to be until things calm down. Hugs to you all. :ghug: I hope you get a little peace of mind and a plan.

I used to be fond of saying "We can do anything with a diagnosis and a plan....."

Hang in there -

J.
 
We just settled in for the night...been a long day. SED rate is 34, I forgot to ask what crp was. White cell up too. We will stay at least till tuesday and take IV solumedrol and antibiotics. Had a CT today and we will get those results in the morning. GI got frustrated with us questioning everything. Wants to stay the course. I think we will be doing exclusive EN for 6 weeks. Haven't told Ryan that yet. I am exhausted ,but I will probably sleep better knowing something is getting done.

I think EN is fab and you can use it along with the Remicade and doc "shouldn't" have an issue with that.

Yeah best not to spring that on Ryan when he isn't feeling his best. When you do tell him have him read the posts. If he wants to email O I am sure she would give him her take on it.

Good Luck!
 
Thanks for the update hun. :hug:

Good luck with the CT results. I hope it gives you solid answers. Fingers, toes and everything else crossed that Ryan is okay!

Dusty. xxx
 
Good Morning Cheerleaders!

CT results were normal. :smile: The GI on call wants to try to do the pill cam Monday. They are doing a C difficile test and the stool inflammation ? test so we are confined to our room until C dif comes back negative REALLY? stuck in a room with a 14 yr old who can't eat anything? AND I was given that great news by a nurse who woke me up at 2:30 a.m. to tell me. But Ryan has a laptop (I am using Hee Hee), tablet, ps3, and tv, and permission to do all at once, so he should be in Heaven.

R is taking Flagyl and Solu Medrol. Long term they want to increase the Remi dosage but stay at 8 week intervals. Also going to metho injection and learning that Monday. He was on oral metho. It's a lot to take in and as most of you have experienced, Dr is pretty set in his ways!

Thanks for the prayers and concern. Gotta go referee Ryan and Dad :ybatty:
 

Latest posts

Back
Top