Can a dietician help?

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can a dietician help?

I recently asked my new GI doctor if he worked with a dietician. he said he didn't because it does not help. So I got in touch with a dietician and she pretty much confirmed that. I asked her about how to get better nutrition during a flare and she said the Ensure type shakes are the only over the counter things you can take. She said if you get blood tests that show you are low on B12 you can then get shots.

I asked her how you can get nutrition when your illeum is inflamed and she said there are ways but they require hospitalization. The feeding tube puts stuff into you stomach that she says is so broken down it absorbs anywhere in your small intestine. But it tastes so awful you could not just drink it. They can also put nutrients directly into your bloodstream near your heart.

I'm just posting what I was told. Obviously there are tons of anecdotal evidence which can't be ignored.
 
Really?? That doesn't sound right to me. I'm going to see my GI next month and I was going to ask him if he could refer me to a nutritionist or a dietician anyway, so I'll see what my GI says. Hopefully I'll get a much different answer than what you did!
 
The hospital actually recommended that I see a dietician- I think she is part of my gi team. Though I haven't seen her yet, as we are still waiting for a dx.
 
The first thing my GI did was send me to a dietician, as with Rebecca, she is part of the team. She basically went over the low residue diet with me and talked about how I could play around with it but that there were certain things I should always avoid.
 
I have seen 3 dieticians, and none of them knew very much about Crohn's. One of them printed off promotional material about Modulen... which isn't even available in Canada! The other two told me I should be increasing my fibre intake, even when flaring and having diarrhea, because fibre would 'bind everything together'... Maybe so for the rest of the general public, but eating fibre when I'm flaring makes me so much sicker. Had to learn the hard way about what to eat and not eat. I find much more useful information is on the internet... I hope I find a dietician who actually knows what they're talking about when it comes to IBD. You would think a condition that has so much to do with diet, that they would study IBD as part of their education.

I think the nutrition methods your dietician was talking about, C_Stinky, were TPN (Total Parenteral Nutrition - the feeding tube), and PICC (Peripherally Inserted Central Catheter), maybe? Yeah, as far as I know you have to be in a hospital for those. If you are flaring and are looking to get nutrition, stick to a liquid diet - broths, juice, Ensure... Also maybe try Low-Residue diets. If you are really really sick, though, it won't matter because the nutrients won't get absorbed.
 
My GI suggested I consult a dietician, but it's probably because he was passing the buck. He's prescribed me all the diarrhea treatments available.

I'm well aware of what I consume. My problem is not a poor diet, nor trigger foods.
 
My specialist has a dietiian on his team to

they helped sort out a low fibre/low residue diet for me which has helped heaps

they also were able to give me loads of info on foods that ud otherwise hav to try an find myself (if avail)
also recipes to try and foods to avoid when on a flare etc

heaps of information, you don't have to follow it all but it is handy to read up on it at times when I'm unsure about something
and she is always avail if I need some extra help or info, jus a phone call away

quite surprised your specialist said tht a dietician can't help
medication is about 40% of helping this disease
the other 60% is mainly diet an lifestyle

I'm hoping in a while my cd will calm down enough on my Meds that I can start some more serious excersize an get fit enough for work again
 
When I was sent home with the Perc drain for a couple of months I was set up with a Nutritionist as well as a home care nurse. My GI said he wanted my flair to come down before he went in so they didn't have to remove so much. My Nutritionist set me up with a calorie count to try and prevent further weight loss on a liquid/soft food diet. She was a great help in getting though that. But I guess it depends on the severity of the situation too.

I saw the hospital nutritionist before I was released. Then the home care one came to my house at the end of the first week. I also had a nurse visit every second day to aspirate the drain and monitor my vitals. My BP hardly ever got above 100 at the time and I was 135 lbs from my normal 170lbs at 6'1". I really relied on their help and felt it made a world of difference. Even if it was largely moral support.

I still keep with a lot of recommendations from that Nutritionist even if I still don't buy Organic free-range Buffalo meat :lol2:
 
I had a completely frustrating experience with the dietician I was sent to! In a 40 minute appointment, I realised about half way through she didn't even know I had Crohns - despite my being referred by the GI!!!! Her only concern was my low weight and how I had to put some on. She kept suggesting things I cannot eat because of the high fibre and her basic solution for me was to eat heaps more carbs and sugar!!!! Now THAT'S a healthy option!

Interestingly when i went to the GI for a follow up this week, he pretty much said the same thing. When I said I was having trouble gaining weight he said I needed more sugar! I said 'But it's inflammatory isn't it?' to which he replied, 'Yes, but you need the calories' - do these people have NO idea!!!!!!???
 
So Shazamataz... you were basically prescribed the cupcake diet and thanks to crohn's you had to say no! This may just be the worst disease in the entire universe!!! :lol2:

I think there needs to be a couple of lines of thought here with diet.

One, can diet cause flares or prevent them?

Two, when you are in a flare how can you improve your energy and not make the inflammation worse.

Also, if the feeding tube diet is based on foods that are broken down, or predigested if I can call it that, perhaps a diet can be put together of easily digestible foods that you can put in a blender. Orange Julius anyone?
 
We were set up w/ a dietician about 3 months after EJ's dx. She simply said avoid high fiber during flares and eat a well-balanced diet (3 food groups per meal). I wonder how much Vanderbilt is paying her...I'm thinking too much if it's based on her crohn's diet advice.
 
The first thing my GI did was send me to a dietician, as with Rebecca, she is part of the team. She basically went over the low residue diet with me and talked about how I could play around with it but that there were certain things I should always avoid.

Kelly what did she tell you to always avoid? I'd get more from that than we got from our dietician.
 
The dietician I worked with recommended more fibre, too, saying that only the insoluble kind (or is it soluble?) is bad for Crohn's. I tried and, nope, both soluble AND insoluble fibre are really, really bad during a flare, like, in-bed-for-two-days-in-agony bad.

I still think it's a great idea to work with a knowledgeable dietician about Crohn's-related issues such as the ones mentioned above. If nothing else, some of us have to deal with finding new ways to make meals interesting (wait...no salad? Really?). Dieticians are great for suggesting food and meal alternatives, for example. But what seems clear from just the number of comments posted in this thread already is that not all dieticians are "Crohn's-appropriate," or at least appropriate for some individual cases. I think that one who recognized your particular needs and responded accordingly would be a HUGE help, maybe not for controlling level of inflammation per se, but at least promoting better all-around well-being.
 
Hmmmm, reading all the above makes me appreciate how lucky I am with team and support I have!

My gastro team has a dietitian integrated with them that specialises in Crohns Disease. I stay in touch via email with her, organise my appointments with her to coincide with my GI appointments too. In fact I am seeing both of them on 14th June.

I use Elemental 028 extra which yes ok is an aquired taste and it certainly seems that many of you are unable to get this. Google it and check out the website page relating to the drinks and Crohns etc. You will find it is absorbed in the first metre of the small bowel allowing the gut to rest, health and repair from there down and also gives you the nutrition you desperately need. I went for that as a first treamment rather than long term antibiotics or steroids that were offered at the time. Yes it can be given by naso gastric tube but it can be drank too. It is my safety net when I am not good guts wise and I actually crave the stuff too when I know I am not good lol

On the diet front she has been fantastic organising all sorts of specialist diets for me as per my allergy, dermatology and gastro cons all liasing together. At one point I was gluten, dairy, azo dye, benzoic acid and maize free along with low fat, low fibre, high potassium high vitamins and she spent time researching it all and working out what exactly I could have and providing it in printable A4 format too. We are trying to work out now what I really need to do and what I can actually live with and manage with doing now and in the future. I have come to accept I have massive food intolerances and need to tailor my diet accordingly.

If I need to pick her brains I just email her and she comes back to me in a couple of days - unless on hols etc.

The other regime I was on was LOFFLEX diet. Google that too or have a look at the threads relating to it on this forum.

As for those whose consultants tell them diet has nothing to do with it research for yourselves and you will find that diet has everything to do with how we manage our crohns! A website set up by one of the consultants at the hospital I go to is www.crohns.org.uk. Nice easy pages to hunt through and clear explanations too. The first statement made on the diet and crohns page is that diet is the best treatment for crohns in many ways!!!! Says it all I think eh?

Hope what I have said helps guys. Like I said I know how lucky I am with the help and support I get! I just wish you all could have the same!!

((hugs))
 
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Kelly what did she tell you to always avoid? I'd get more from that than we got from our dietician.

Nuts, corn, bean sprouts, mushrooms, coconut and popcorn. The mushrooms made me especially sad. If I were to ever have surgery, I could likely try some of these, but for now, they are very, very bad for strictures.
 
I saw a dietician on my own, turns out she knew more than my Gi and GP put together!! It was amazing what she knew! She knew exactly what a Crohnie should and shouldn't eat. What Vitamins etc. Not every dietician is created equal, just like some doctors. Most should know because your intestines are what absorbs your nutrients to help your body funtion and lack of nutrients can cause a whack of problems.
 
I wonder if there is a difference between a Dietitian and a Nutritionist. The one I had sounds much like Jetlady's and Soupdragon's experiences.

Maybe it was due to the type of certification and training they had. I know in the states the words diploma, certification and degree do not have the same meaning as they do in Canada and England.
 
The dietician I had specialised in digestive diseases. She is in my clinic with my Gp, Gi and foot specialist. Lucked out.
 
I wonder if there is a difference between a Dietitian and a Nutritionist. The one I had sounds much like Jetlady's and Soupdragon's experiences.

Maybe it was due to the type of certification and training they had. I know in the states the words diploma, certification and degree do not have the same meaning as they do in Canada and England.

Actually there is a difference. A dietician needs a degree and is the more technically trained, as far as I remember reading from wikipedia.
 
The going "clinical" line is that diet won't "trigger" a flare, unless it's high in refined sugars. Diet can, however aggravate a flare, or make it worse. And a Crohn's/IBD diet during a flare is different than a Crohn's/IBD diet in remission.

My GI specializes in Crohn's disease and will tell you what to stay away from during a flare. ALways on the money. But he says when you're not flaring, diet is never the same for any two Crohn's patients, some can eat this, others can't. He also will tell you if you can't figure out a workable diet, then see a dietician available at the clinic.

I have a dietician who I consult over the phone and through email who was given to me by my health insurance. Her service is free. An RN from my health insurance picked her out because I balled her out because she kept mixing "IBS" with IBD". So she diligently found a dietician for me with Crohn's expertise. The dietician was/is spectacular, and her diet recommendations outside of flaring are on the money. She gave me a link to a "Low-residue Diet" for IBD sufferers for the times I'm flaring.

She also had me write down the list of "foods to avoid" which give different Crohn's patients problems. She said I can probably eat some of the things others can't. That's just the way it is with Crohn's. The list she gave me had foods that bother people enough to make it to the list, but not everyone with Crohn's is bothered by every item on the list.

So I certainly believe diet is a factor in managing the disease, and if it's a high-sugar diet, it can actually trigger the disease or a flare just like NSAIDS and smoking.
 
During a massive flare back in Jan, I was given 40mg of Pred, baring in mind that I had been watching what I ate, and was quite sensible, and it came from nowhere, BAM!
So, within days of Pred, I was ravishing the entire contents of the fridge, eating absolute crap, sugar, fats, carbs, etc, anything I could get my hands on, really jittery like I was starved!
Not once did I have any pain or D during these massive feasts, and I know Pred masks symptoms and it healed me nicely, but I don't understand how that works?? any clues?
 
Regular Joe, Soupdragon, and others, thanks for the informative posts. It's helped clarify the varying messages that I've been reading in books.
 
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I recently asked my new GI doctor if he worked with a dietician. he said he didn't because it does not help. So I got in touch with a dietician and she pretty much confirmed that. I asked her about how to get better nutrition during a flare and she said the Ensure type shakes are the only over the counter things you can take. She said if you get blood tests that show you are low on B12 you can then get shots.

I asked her how you can get nutrition when your illeum is inflamed and she said there are ways but they require hospitalization. The feeding tube puts stuff into you stomach that she says is so broken down it absorbs anywhere in your small intestine. But it tastes so awful you could not just drink it. They can also put nutrients directly into your bloodstream near your heart.

I'm just posting what I was told. Obviously there are tons of anecdotal evidence which can't be ignored.
nm
 
hi guys,im seeing a dietition who knows abit about crohns as she worked in the hosp as a nurse before she left to become dietition.as for foods to not go near i was told sweetcorn,mushrooms nuts and steak which can be hard to digest along with pork,i tend to stick to chicken,fish duck breasts and not everyones cup of T ostrich steak,its very lean and i dont struggle to digest it like steak or pork.the dietition told me coffee as well.the dairy product debate is a weird one for me as i can take youghurt milk butter but as soon as i go near any cheese im straight into the loo and its no pretty compared to the guy next to me in the day ward for imflixamab admin was tucking intae cheesy peices(sandwiches).also i can tolerate curry sauce and tikka and korma but anything with chillies and im runnin tae the loo like an olympic sprinter.so it does seem everyone tolerates thing differently.im now week 1 into modulen so im missing food like you wouldnae beleive.@ joan i hear ya i was eatin all sorts of ***** on the preds and was ok with it and thats what makes this modulen worse as im still on the preds,hopefully i'll get the benefits from it and get into remission and of the preds,H
 
The going "clinical" line is that diet won't "trigger" a flare, unless it's high in refined sugars. Diet can, however aggravate a flare, or make it worse. And a Crohn's/IBD diet during a flare is different than a Crohn's/IBD diet in remission.

When we concider that IBD is a disease that is essentially controlled by the immune system, I would have to go with this line of thinking as well. Nothing really "causes" IBD - it just "occurs"... really nothing we can do to control it.

However, like Joe went on to say, when one is in a "flare up", there are probably things (food, exercise, stress, smoking, etc) that can make this flare better or worse. Joan stated she ate all kinds of crap while in a "flare" and felt no effects. I have had this happen to... or the other thing that happens to me is, when I feel really crappy and crampy, I craze something full of fat and grease, like KFC or "chinese" food...lol

And then there are people that find that some foods bother them, whether their disease is in an actual flare or not. There are people without IBD that find the same thing.

As said many times over on the site, it is just such an individual disease... no two people are exactly alike in how their disease and/or body reacts.

Also, as stated earlier, there is a difference between a nutritionist and a dietition. A dietition has more education and hase studied the digestive system more in depth. Good idea to check one out and work with one, especially if one know exactly what part of their intestine is diseased. The dietition will be able to help you decide what foods you can eat, and what vitamins/minerals you need to supplement as that part of your digestive tract isn't working so well.
 
Chronicaly Stinky,

I was also advised NOT to go to a dietician/nutritionist, as there is no evidence that a change in diet may help alleviate the symptoms of Crohn's disease.

However on 11th June I went to see one anyway, as I was feeling a lot worse and my doctor's only solution was to put me back on the Prednisone.

I'm now on a no sugar, no flour/grain/gluten, no potatoes, no milk or cream (cheese is okay) and only one fruit a day diet. The incredible thing is that it has helped me so much already! The blood is gone (from what I can see), and my stool has changed from diarrhea to normal looking in only a few days. I am so happy, and also so I know that a change in diet may not be applicable to all of you, but I definitely think it would be worth trying. It is fairly easy, has no side effects and may actually help! :)

Good luck to you, and please PM me if you have questions or are just curious as to how I manage to find something to eat that is not any of the above-mentioned. :p

Take care!
 
Chronicaly Stinky,

I was also advised NOT to go to a dietician/nutritionist, as there is no evidence that a change in diet may help alleviate the symptoms of Crohn's disease. . . . . . . . . . . . .

Who told you that!?

I was put on a very strict diet by the GI medical team leading up to my operation. And the advice I get from my Family Physician is to eat bland and well balanced. I have had it explained that my diet my be permanently modified simply by the physiological conditions created from the operation. Meaning that sometimes the D and stuff is not evidence of disease but can be caused by over stimulation of bile salts and the bowels inability to cope with them. So even though diet might not Cause a flair, it can aggravate symptoms of short gut or put pressure on a physically restricted section of bowl.

I can not comprehend how diet can not effect the condition :confused2:
 
Who told you that!?

The specialist doctors and nurses at the hospital told me when I asked if a change in diet could help... Can you believe it? It took me a while to decide to try it anyway, but when the option was cortisone treatment I just had to try. :) And I can't believe my doctors hadn't told me it could work! I still am so disappointed in them! I could have felt so much better so much earlier, and they wouldn't even let me try it "as there is no evidence that a diet alleviates the symptoms of Crohns disease"...

So to all of you who are considering trying it: YES, it can help. It is worth a try! :)

<3
 
Who told you that!?

So even though diet might not Cause a flair, it can aggravate symptoms of short gut or put pressure on a physically restricted section of bowl.

I can not comprehend how diet can not effect the condition :confused2:

I totally agree to this, Kenny. We need to make the best environment for our intestines to work and heal, and since some foods can make the symptoms worse, avoiding them would be a very obvious "cure". Doesn't take a specialist to see that. :)
 
I have eczema, and my skin is irritated by certain things e.g. Metals. If someone else has eczema, their skin might be effected by wash powder instead. But the doctors agree that certain things (different things for different people) touching the skin can trigger eczema and dermatitis.

Now replace eczema with crohns and skin with gut.
 
During my initial assessment and treatment it was decided that the steroid meds would hinder my ability to cope with the level if internal infection I was suffering from. I did a whole three months of liquid/soft food diet backed up by a nutritionist in lead up to my resection. I had to stop working and focus solely on taking care of myself for that time, but the goal was to get my gut ready for surgery. By letting the inflammation subside with a liquid diet in combination with 5 ASA and Antibiotic treatments I was able to save a lot of gut that would have been removed in an emergency surgery. I believe it was severe diet modification that got me there.
 
My doctor said that diet has nothing to do with controlling Chrohn's. In fact, he seemed insulted when I suggested it.
 
My doctor said that diet has nothing to do with controlling Chrohn's. In fact, he seemed insulted when I suggested it.

Well, that is exactly my specialist doctor's reaction as well. But I honestly believe it has helped me, so I definitely would advise all of you to consider it as an option to medical treatment. :)
 
dlzoidberg, my doctor had the same attitude, but he was more dismissive of the idea than he was insulted and he is on the local CCFA board and has patients in research studies etc.

I think diet can greatly affect things when you are in a flare. My intuition tells me it can also affect how often and how bad you get flares. I see it being similar to smoking. There are diseases or illness's that are worse or that you are more likely to get if you smoke, even if smoking isn't the root cause.
 
My doctor said that diet has nothing to do with controlling Chrohn's. In fact, he seemed insulted when I suggested it.

It may not create the disease but it most certainly affects the symptoms of the disease. these are two distinctly different things and our doctors need to be more considerate of the effect that symptoms have on us. At the same time we need to realize and understand that too.
 
Well, that is exactly my specialist doctor's reaction as well. But I honestly believe it has helped me, so I definitely would advise all of you to consider it as an option to medical treatment. :)

Your ALL making me glad I quit smoking without knowing it was effecting my disease specifically :) 2 months+ and going strong on that one. It took Crohn's to help me stop quitting and stay quit forever.

Meanwhile, I had a consult at a health food store (yes sales-owners) but they run an anti -western-med radio show and I thought I'd give the radicals a chance. I hadn't even bothered with western med (established science) in many years, so they are kind of radical to me too (albeit they saved my life in my first flare of almost starving to death.)

So these people, one of which has Crohn's went down their list of nutrients etc but the most prominent thing said in my observation was it would be in my best interest to cut out carbs of all sorts, which of course seems against the IBD 'soluble fibers are good for you' idea.

His reasoning was that all carbs need to ferment in the gut to turn to sugar.
the bacteria that we as Crohn's sufferers get 'infected'(?) by, feed off of sugar, especially fermenting sugars. That made sense to me. That's how beer is made.

He insisted that especially during a flare, cut out all sugar.

Elsewhere I have seen it mentioned that simple sugars are actually safer (huge moderation) because they leave the gut quicker than carbs which stay longer (fermenting). mono-saccharides vs polysaccharides.

It is so amazing how we are all lumped into this one disease when we all react so differently and have otherwise diverse experiences.

I really want nutrition to be my answer. If not, so be it. Living is the most important answer for me at present.

-------
Diag - April 2010
Lost 50lbs in 2 weeks or so.
PICC in hospital saved life + 120mg solumedrol daily and narcotics
-
50mg pred now (*tapering by 5mg a week)
100mg daily azathioprine (no third eye growths yet)
Liquid D3, Primal Defense probiotics, Fish oil, Sardines, b complex, calcium/mag(for the prednisone bone leeching and cramps), acidophilus chews.
REPULSED: caffeine, alcohol, tobacco, all fried foods except with olive oil and nut oils.
CRAVES: peanut and other nut butters butter(smooth), hard boiled eggs, sardines, chocolate(dark, with no refined sugars), meat.
Still love prednisone for its salvation. I can see the h8 coming though.
 
Hi Jesse, welcome to the forum! You should tell us your journey on a your story thread so we can meet and greet you. I see you have joined in nicely. Great people here who share their experiences and opinions. Let us get to know you.

Welcome aboard!
 
His reasoning was that all carbs need to ferment in the gut to turn to sugar.
the bacteria that we as Crohn's sufferers get 'infected'(?) by, feed off of sugar, especially fermenting sugars. That made sense to me. That's how beer is made.

I have read this in a Norwegian study, and it perfectly makes sense to me too. I think your doctor is on to something. In the study I'm talking about, the author argued that IBD patients may have a different bacterial flora (I think he was mainly talking about colon bacteria here), with more of the bacteria that feed off of sugars. These bacteria, the author argued, also release toxins as a waste substance; so the more sugar/carbohydrates, the more food for the bacteria that release toxins.

Interesting theory, and it makes sense doesn't it. It also explains why lactic acid bacteria as a supplement is proven helpful in IBD patients. This would help normalise the bacterial flora in an IBD patient, by adding more of the "good" bacteria that release waste which is not as harmful and in many cases good for the healing of the lining of the gut.
 
I am not sure that probiotics (lactic acid bacteria) have been 'proven' helpful in ibd. I think some studies say they are, some not depending on sample size, probiotic choice and type of ibd. I think the consensus is that probiotics are worth a try as they are unlikely to do any harm.
 
I am not sure that probiotics (lactic acid bacteria) have been 'proven' helpful in ibd. I think some studies say they are, some not depending on sample size, probiotic choice and type of ibd. I think the consensus is that probiotics are worth a try as they are unlikely to do any harm.

Yeah, you are probably right, Rebecca. Proven helpful was maybe not a good way of phrasing it, although this is actually what my nutritionist doctor told me. :p I think that the effect is also better documented in Ulcerative colitis, than in Crohn's from what I've heard/seen/read.

Anyway, the theory is interesting nonetheless! Would be interesting to do research on the topic of Crohn's. If only I was a doctor! :p
 
Have started the steps to get my insurance to approve a nutritionist. Running out of foods that don't irritate me and need to get on some sort of healthy, and helpful diet what I have tried in the Crohn's books etc. just don't seem to be helping.
 
Seeing a nutritionist/dietary aid for the first time in about and hour!! :) hopefully i have a better experience than some ive seen on this post. Will update!
 
My GI doctor is 100% behind the idea of me seeing a dietician. I don't understand how someone could study the effects of the digestive system, and not get that diet is important for optimal health? Seems so strange to me.
 
My doctor said that diet has nothing to do with controlling Crohn's. In fact, he seemed insulted when I suggested it.

That always reminds me of the scene in Monty Python's 'Meaning Of Life' when the pregnant lady asks the doctor if she should do anything
In a patronising voice.......
"No dear, You're not qualified"

In most cases a dietician will follow the training they were given,
Eat your 7 serves and it doesn't make any difference what you eat,
A few have thought about it and recommend low residue because it's obvious (that fibre can cause pain)
Even fewer will look outside their indoctrination sorry, training, and see what helps in the real world. (FODMAPS, GAPS, PALEO etc)

This is a talk (split over 4 posts) given by a GI on nutrition (a diet that he recommends because it works) and well worth watching, there is also a series on supplements
[youtube]C8xLkEHZxDg[/youtube]
 
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