Has anyone seen/had/heard of there being a link between a gluten allergy or intolerance and crohn's disease, or it being a trigger?
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Gluten allergy and crohn's disease?
- Thread starter summerflip
- Start date
I have both Crohn's and celiac. I was diagnose with Celiac first-I was gluten free for 2 years before being diagnosed with Crohn's as well.
Both the blood test and biopsy can technically give a false negative if you have been off gluten for awhile before having them. To me, the best way to truly find out is to avoid it all together for a month or so.
Both the blood test and biopsy can technically give a false negative if you have been off gluten for awhile before having them. To me, the best way to truly find out is to avoid it all together for a month or so.
I have both coeliac and crohns, I was diagnosed with coeliac first.
There is a lot of dispute over the existence of 'non coeliac gluten intolerance '. Some doctors don't believe it is possible others do.
Personally, I think if you think you are gluten intolerant then you should be tested for coeliac because there is a big difference. Coeliac is auto-immune and carries a great potential for side effects so it's important to know if it's there. If you want to be tested you must be easting gluten at the time of testing. If you are not then testing isn't accurate.
A lot of people with crohns disease choose to leave gluten out of their diet because they feel it improves their symptoms. This doesn't necessarily mean that they are intolerant, a lot of gluten containing foods are high in fibre, which can cause problems for those with crohns. Reducing fibre can help with symptoms, so reducing gluten can help in similar ways to reducing certain other foods. It's a very individual process.
There is a lot of dispute over the existence of 'non coeliac gluten intolerance '. Some doctors don't believe it is possible others do.
Personally, I think if you think you are gluten intolerant then you should be tested for coeliac because there is a big difference. Coeliac is auto-immune and carries a great potential for side effects so it's important to know if it's there. If you want to be tested you must be easting gluten at the time of testing. If you are not then testing isn't accurate.
A lot of people with crohns disease choose to leave gluten out of their diet because they feel it improves their symptoms. This doesn't necessarily mean that they are intolerant, a lot of gluten containing foods are high in fibre, which can cause problems for those with crohns. Reducing fibre can help with symptoms, so reducing gluten can help in similar ways to reducing certain other foods. It's a very individual process.
Thank you all so much for the input the information helps tremendously
I can share my experience about gluten free diet,
I tried it, 1 year ago, after I got a flare-up under control with an Entocort treatment and after they found *another* stricture in my bowel.
My GI told me I should get a surgery (while I was feeling good) to remove the stricture and then start Humira, I was a bit scarred by this medication, so I declined, and started to learn more about gluten free, and tried it to see if it would work.
The first 2-3 months, my bowel transit was definitely better, but I ended up with another flare-up for 3 months... I became very weak, lost weight, and I got an emergency surgery. So now I'm on humira.
After the surgery I was wondering if I should give it another chance, but no.
It's not very easy to follow this diet (gluten is everywhere and even the alternatives are not all trustable) and it can become stressful.
So I have a mixed opinion about this diet. I'm sure it can be good option for some people (I've read somewhere that some people with Crohn's can be gluten sensitive, without being celiac), but in my case, I don't think it's worth it.
I tried it, 1 year ago, after I got a flare-up under control with an Entocort treatment and after they found *another* stricture in my bowel.
My GI told me I should get a surgery (while I was feeling good) to remove the stricture and then start Humira, I was a bit scarred by this medication, so I declined, and started to learn more about gluten free, and tried it to see if it would work.
The first 2-3 months, my bowel transit was definitely better, but I ended up with another flare-up for 3 months... I became very weak, lost weight, and I got an emergency surgery. So now I'm on humira.
After the surgery I was wondering if I should give it another chance, but no.
It's not very easy to follow this diet (gluten is everywhere and even the alternatives are not all trustable) and it can become stressful.
So I have a mixed opinion about this diet. I'm sure it can be good option for some people (I've read somewhere that some people with Crohn's can be gluten sensitive, without being celiac), but in my case, I don't think it's worth it.
I'm brand new and just posted my first introduction post. In it I mentioned something about a gluten intolerance and how I feel it can cause a flare for me.
I did gluten free for a while and felt the best of my life. Unfortunately it is very difficult for me to eat gluten free because of the easy access to those foods.
Some other possible triggers for me include:
Dairy
Gluten
Fried foods
Beans
I did gluten free for a while and felt the best of my life. Unfortunately it is very difficult for me to eat gluten free because of the easy access to those foods.
Some other possible triggers for me include:
Dairy
Gluten
Fried foods
Beans
Matrix, your surgery, did they have to remove part of your bowel, and if so did you have to have a colostomy bag? I've been in a flare for 5 months now. I was put in Entocort but had to stop, because it was giving me insane side effects (Horrible mood swings, memory loss, like blacking out, and a bunch of other crazy ones that are rare) I was hospitalized for 4 days about 3 weeks ago, and now I'm on 40 MG of prednisone and still having symptoms. I've been on remicade in the past, and will be going back on it in a week or two. My gi is referring me to a "super specialist" I'm worried that they are going to recommend surgery. I don't know what to expect andy docs seem to be hesitant to really tell me what to expect. Is there anything you can tell me about your experience with it? I'm 29, and have been diagnosed for 10 years. I'm kind od terrified about the details, as I'm a mom to three young ones and trying to finish my degree. Anything you can tell me, good and bad would be so appreciated
Hi, yeah they removed a little part of my bowel, it was my 3rd surgery and no colostomy bag. I think there is always a 5% chance to get one (temporary) if it doesn't heal properly
It's sad that prednisone isn't working for you
Entocort wasn't working as fast as prednisone but both of them were very effective for me, and no side effect (short term of course).
About the surgery, how much damaged is your bowel ? and why aren't you on Remicade anymore ? My GI told me it is always better to start Anti-TNF on a healthy bowel for better chance of a long term remission.
Why are you worried about the surgery ? Yes it is scary and there are some risks (and it's why you have to put in the balance how bad you are vs the risks), but most of time it will give you a better life for a few (or more) years. I was a bit scarry about having another surgery last year... but when Crohn's struck back again in less than 6 months and because it was destroying my life, "life threatening" relapse, I lost 20% of my weight, I couldn't eat, the stricture was severe, I was weak, no energy to take care of my daughters...
Then I was more frightened by the disease than by the surgery.
In fact, the surgery was a blessing :thumleft:
I hope you can get a remission soon one way or another
It's insane to have to take care of 3 kids + Crohn's at the same time.
summerflip,
Here is some good info about gluten sensitivity--the lectures differentiate between celiac disease, wheat allergy, and non-celiac gluten sensitivity.
http://limelightdc.com/clientarea/naspghan_gluten_webinar_06_13/landing_page.html
Here is some good info about gluten sensitivity--the lectures differentiate between celiac disease, wheat allergy, and non-celiac gluten sensitivity.
http://limelightdc.com/clientarea/naspghan_gluten_webinar_06_13/landing_page.html
Thank you so much!
I can relate to the easy access. When I was in Colorado, there was a Whole Foods or Wild Oats on almost every corner. Since moving to Texas, I find it is harder to find good, affordable, gluten free items. I have to take a day every 2 weeks and travel to 4 different grocery stores to get what I need.
I go see a doc next monday. I'm going to ask if he will have me tested. And after test, I'm going to try to go gluten free for a month or two and see if there's a difference. People input has really helped give me the kind of info I was searching for.
Don't forget to keep eating gluten until after the test. I had one false negative b/c I had stopped eating it for a few weeks prior.
Yeah that's one of The tips I got from this thread. I had planned on stopping before the test, Then got the info about the false negative, so I haven't tried to cut them out or anything