Do special diets help help IBD?

[kimmidwife]

Good morning all!
It has been a rough few months for us. We are unfortunately really torn on our next step.
My daughter does not want to try EEN again. But I have been thinking about maybe trying the SCD or FODMAP diet with her.
However there is so much conflicting information about diet and IBD. Much of the literature out there and most doctors at least in the USA put little weight on special diets.
That said however we do know that EEN in many cases does put people into remission. So if EEN does work doesn't that prove there is some validity to diets in IBD?
I would like to hear from some of you that have tried different diets and what your results have been.
For us we only tried EEN and it was a failure because my daughter could not completely stick to it.
I am not sure where we are going in this journey now but I really need some advice from all my friends here.

 

[Farmwife]

:hug:I completely understand about not knowing were we go from here statement.

Not much help on the diet part. I looked into SCD diet but I thought it was way to restrictive of a diet for my dd. She already struggles with weight and I couldn't see how that would help.

 

[If*]

Hello, diets / nutrition surely must matter ~ this is an illness of the digestive tract. Some of the 'diets' for IBD are more so targeted at high nutrition and items that are most likely easier to digest. There is also GAPS to take a look at and Paleo.
There are certain foods that can irritate the tract causing increased 'symptoms'. Diet can be a difficult aspect of this illness ~ especially since 'triggers' concerning foods can change drastically from time to time.
Something to look into for sure. I hope you can find something that can be tolerated and bring relief, comfort and a healthy weight.

 

[my little penguin]

Thoughts on EEN over scd/others.
Givens whole foods take a healthy gut to digest .
Given some foods are known to be harder on the gut than others
Some other foods give only a few people issues.
EEN either polymeric or semi elemental is generally easier on the gut
But for reasons unknown TPN which does not use the gut at all does not have the same healing effect as EEN .

Could scd etc work ... Possible in some .?
With a picky teenager who doesn't want to do it
Probably not .

Are you trying to induce remission , just have her feel better or have it as an adjunct therapy to another med ?
I know you added steriods recently due to a flare ,
It depends on what you want to get out of it..
Is there a reason your not trying new meds ..

Diet is hard to prove scientifically whether it works because not everyone follows it
EEN is easier to prove since the content amount etc is very controlled .

Given she has been on board with any other diet changes ( I know my older kiddos wouldn't be either ) not sure how effective it could be kwim .

 

[my little penguin]

Fwiw my non Ibd kiddo does well on a modified version of gluten free /milk free
Ibd kiddo -fodmap did not help at all,

 

[kimmidwife]

Thanks MLP!
She is continuing on LDN. We are still thinking about what to do next. I am worried that she may end up being allergic to cimzia. The methotrexate worked for a while then stopped so i am not sure if it will help.
I am feeling very overwhelmed at the moment. I just am very torn on how to proceed. It seems like she never catches a break. When we finally got her into remission then the whole gastroparesis thing started. Now the crohns is rearing it's ugly head while she still suffers with the GP.
:depressed::tear:

 

[Maya142]

I have heard that people are much more likely to be allergic to Remicade than Humira or Cimzia. In fact, I've never heard of anyone having an allergic reaction to Cimzia!
M has been on MTX several times and it worked each time (but with a biologic). Even Humira worked twice for her (but not for long the second time).

She is now doing supplemental EN using an NG tube - just to gain weight. I don't know if drinking the volume required for EEN was a problem for Caitlyn, but M much prefers the NG tube to drinking any Peptamen at all. Many GI's now will let kids do 80% EN and 20% food even to induce remission.

 

[DustyKat]

My personal opinion is that diet, which ever one it may be, is much like everything else with IBD, it works for some and not for others. I do believe that it can and does make a difference for some whether it be EEN to try and gain remission, EN to gain weight or something like a low residue diet to alleviate symptoms when flaring and so on. As a non IBD person there are foods that I either I don’t like or they don’t like me, even at that basic level food has some influence over the way we feel physically and how we approach it psychologically.

I know there have been others here that have had success with the SCD but on the flip side I know Dexky ended up taking EJ off it because he was losing too much weight.

I will tag happy into this as she has had very good success with diet and in doing so has extensive experience.

Sarah is on a vegan diet at her instigation and she juices most days. She looks well and says she feels great. Is it making a difference? I don’t know, she was already in remission when she started. She is still in remission but I can’t say that it is the diet that is doing it but while ever she is happy and healthy she may as well stick with it.

Dusty. xxx

 

[xmdmom]

Diet is soooooo hard! I wish I had some good advice for you. My son really wasn't able/willing to try a restrictive diet for more than a week and that didn't seem to work.
I've heard that avoiding high sugar foods is helpful and he does do that.

It sounds to me like EEN often works well but stops working when you come off it.
EEN has been hypothesized to work by modulating the intestinal microflora and/or eliminating something from the diet that causes/aggravates Crohn's inflammation. It also allows people to get in a lot of calories and nutrition which can be key if poor nutrition is an issue.

Another diet that has been shown to prevent relapse in adults with Crohn's is a semi-vegetarian diet in Japan; the diet contained fermented foods. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2877178/

You or others might be interested in a long article entitled Food and the Gut Microbiota in IBD: A Critical Connection is available online http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3822011/

HUGS
It is definitely not easy.

 

[Justanothercp]

For what it is worth: I started Paleo/Low FODMAP diet about 2 months ago, and feel better than I have felt in 20 years, literally. I have noticed a significant difference. And although the new "diet" takes a lot of time, money; it hasn't been hard for me to give up all the dairy/wheat/etc because I feel so much better. I have also been juicing every morning. My thought: Why not, give it a try.
Good luck and keep us posted.

 

[kiny]

EEN helps ---> therefor other diets should help too

doesn't work I think

How EN works isn't known. But the benefits would be exclusive to EEN and aren't present in normal food.

-EN is free from microparticles that could agitate the intestinal lining. This is because of how sterile EN is prepared and it's packacing. This benefit is not present in normal food.

-EN increases CEACAM6 expression and acts as a decoy for invasive bacteria. This happens with EN, doesn't happen with normal food.

-Exclusive use of bioavailable fats, carbs and protein (medium-chain triglyceride and glucose and hydrolised whey or albumin), exclusive to EN.

I don't think the regular diets help, if at all, and I think EN helps because it's EN, not because it's a diet, it has qualities that can't be duplicated by other foods.


The SCD diet eliminates all the complex carbs from the diet and advocates monosaccharides. Well many people with crohn's disease indirectly follow this in the hospital in intensive care, they are given glucose IV, these people still need treatment, even after weeks of being on IV sometimes, the IV are given for weight gain and because glucose gets turned into blood glucose and is readily available energy for the patient, but it does not treat their crohn's disease. I think the SCD diet if it does anything at all, is so insignificant, that it can't possibly be used to treat acute cases or cases that aren't fully in remission.