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Gluten triggering UC Symptoms?

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Posted 8/19/2014 5:08 PM (GMT 0)
Hi, My 15-year old son has been in remission from UC for 6+ months with remicade. Symptoms went back a few years before diagnosis of UC last summer. First major flare in Dec 2013, after which prednisone for 3 months, Lialda/Apriso (didn't work), then remicade. A month after starting remicade we also stopped Gluten and dairy. He had been fine until our primary care doc suggested starting gluten again because he tested negative for celiac disease and he felt why deny him good nutrition. So less than 2 weeks ago we started him on gluten foods, after 2 days or so he complained stomach hurting (which he never had in the past few months). Then today, he didn't go to school and had the urge for bowel movement a few times in the morning. We are starting to think it is gluten that is his trigger. Although he is much healthier GI vise, given he had blood in stool for several years preceding.

Anyone have experience with gluten intolerance being the cause of their UC symptoms? If so, how did you confirm (any tests?) other than keeping a food journal to see what triggers GI issues?

Thanks,
BK
Posted 8/19/2014 5:53 PM (GMT 0)
hey bv/bk/b? -

eating gluten is not good nutrition if it makes him sick - the celiac test is of no value in determining if he has a gluten intolerance -

sounds to me like your own test was more beneficial -

I don't eat any grains and I'm doing just fine - not saying that would work for everyone, but I think it's worth it to give gluten free another go -

for me, I did better not eating gluten, but I did not start to heal till I gave up corn and rice -

just something to think about -

good luck :-)
Posted 8/19/2014 6:11 PM (GMT 0)
I agree with soy. If he was doing well w.out gluten,I would stick with it. A lot of people have a gluten intolerance which would not show up on the test.
Posted 8/19/2014 7:13 PM (GMT 0)
Thanks soystud and hateuc for your thoughtful response. We are going to go back to w.out gluten again and hope this reverses. The only reason we had gone back on doc's advice was because he had lost some weight and his height gain had stopped. We were just concerned that gluten-free diet may stunt his growth - don't think there is evidence that gluten-free stunts growth. The weight loss is likely more because going gluten-free eliminates lot of the processed junk food (cookies, crackers, etc.) that kids tend to consume. Agree with low-sugar diet too. Thanks!

BV/BK
Posted 8/19/2014 11:25 PM (GMT 0)
I didn't have any celiac testing but I feel so much better off gluten and all grains. My stomach was so bloated before. It has gone down considerably since going low carb and GF. I have no UC symptoms now either but I am on meds too.
Posted 8/20/2014 12:01 AM (GMT 0)
I'm not sure why your doctor would say "denying him good nutrition is correlated from being Gluten Free. In my opinion it's quite the opposite, Gluten is very hard to digest and our good gut flora does not like it. The healthiest people in the world follow the Mediterranean diet, GLUTEN FREE! I tend to bleed a lot more when adding gluten back into my diet.

Like others have stated, I would keep him off gluten. Why bring it back when he was great without it? In my opinion being Gluten Free is healthier if you have IBD or not.
Posted 8/20/2014 12:42 AM (GMT 0)
I went through the same thing as your son. The doctor wanted me to try gluten again and I had a full blown flare within a week and a half. The celiac test is not reliable for gluten intollerance. Listen to your body and what his personal triggers are for UC.
Posted 8/20/2014 3:47 AM (GMT 0)
Thank you so much for sharing from your personal experiences - reinforces our plan to go gluten-free again!

_______________________________________
Diagnosed July 2013, UC, Male Age 15
Remicade infusion every 8 weeks, VSL3 probiotic
Gluten and Dairy Free
Prior meds: Prednisone, Lialda, Apriso
Posted 8/20/2014 3:48 AM (GMT 0)
Thank you so much for sharing from your personal experiences - reinforces our plan to go gluten-free again!

_______________________________________
Diagnosed July 2013, UC, Male Age 15
Remicade infusion every 8 weeks, VSL3 probiotic
Gluten and Dairy Free
Prior meds: Prednisone, Lialda, Apriso
Posted 8/20/2014 12:50 PM (GMT 0)
If you regularly read our forum you will see that it is full of people who tested OK for gluten but later found that gluten (or dairy or anything else) triggers symptoms for them.

Those are tests for GLUTEN TOLERANCE, i.e. if your son is suffering from Celiac. Those tests provide no indication if your son suffers from GLUTEN SENSITIVITY that many of us had to learn the hard way that it can trigger flares.

I would recommend getting a new doctor but unfortunately most doctors don't seem to know the difference.
Posted 8/20/2014 2:27 PM (GMT 0)
There are varying degrees of gluten sensitivity. Celiac is the most severe. There are also non-celiac-gluten-intolerances, which are a lot harder to diagnose (some tests for it but accuracy is called into question as it is not fully understood) and effect a small percentage of the population. Pretty much do what you've done, eliminate, reintroduce, and if there is a negative reaction the you likely have a non-celiac-gluten-intolerance. Like a celiac diagnosis, you should avoid gluten. Good luck,
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