Gluten Challenge Symptoms

[Feeneyja]

I am having my 8 year old tested for celiac disease. She began her 6 week gluten challenge 3 weeks ago and I am puzzled by her symptoms. The first week was terrible. Incredible amounts of gas, nausea, headaches, stomach pain and bloating. This only from 10 pretzels each day. Then, while she was still bloated and full of gas, the severity of the symptoms seemed to be reduced. She was able to eat again, and we started increasing the amount of gluten we gave her each day. Now, at week 4, it seems like she is feeling worse again, this time ALL food seems to bother her, gluten or not (fyi - I'm feeding her gluten free meals and adding her gluten serving separately each day.). Is this typical? Is small intestine bacterial overgrowth typical with gluten ingestion? Her burping and gas to me seem like SIBO, but I am not and expert and doctors are not available for all of my random questions.

[kareng]

If she has Celiac - then eating gluten will start to destroy her small intestines.  Seems like any food might not digest well with a damaged digestive system.

[BlessedMommy]

That's good that you are pursuing formal testing for her. It is recommended though that you do an 8-12 week gluten challenge before you do the blood tests for most accurate results. I chose to leave my 8 year old on gluten for 3 solid months, so that I could be confident that the testing was accurate.

 

How long had she been off gluten before introducing it for the challenge?

 

Best wishes in finding answers.

[nvsmom]

Celiac symptoms wax and wane.  I am confident that I have had celiac disease for my entire life but I wasn't always sick. Some days were better than otheres, some weeks were worse than other weeks, and some years were not bad at all.  When I was feeling poorly, it wasn't always after eating gluten, sometimes it seemed pretty random... probably why it often takes so long for some to get a diagnosis.

 

Doctors should test for SIBO when they check for celiac disease because symptoms can be very similar.  If concerned, ask that she be tested when her celiac disease tests are done.

 

And like Blessed Mommy said, a 6 week gluten challenge is quite short if she has been gluten-free for some time.  If you are just increasing the amount of gluten that she eats daily until the test, then it should be fine.  If she was gluten-free, consider adding 2 to 6 weeks on to the gluten challenge, if she can handle it.

 

Make sure she gets all of the celiac disease tests run.  After the discomfort of a gluten challenge, she wouldn't want to go through that again.

Tests:

tTG igA and tTG IgG

DGP IgA and DGP IgG

EMA IgA

total serum IgA - a control test

AGA iGA and AGA IgG (anti-gliadin antibdies) - older and less reliable tests

endoscopic biopsy  6+ samples taken

 

Best wishes, and welcome to the board.

[Feeneyja]

She was mostly gluten free for about a month, then we reintroduced it and she got very sick. Funny thing is, she has had gas and boating for several months, odd stools for a few years, but celiac never occurred to me. I took out gluten just to see if it made a difference (don't ask me why I chose gluten, it just seemed like a place to start) and WOW, what a difference. I now know that her headaches, foot pain, and lethargy are also attributed to gluten. And then when we reintroduced it, I was shocked to see how sick she got. So, she had a very gluten heavy diet up until the first of the year, gluten free for a month, then gluten light for two weeks until we started the current gluten challenge.

This is a very difficult thing to do to your child. But I understand the need to know for sure what is going on. We are at U of Chicago. Their gluten challenge protocol is 1/2 slice bread for 6-12 weeks. The doctor said we only have to do 6 weeks (I'm guessing it's because she wasn't gluten free for very long).

We are also doing a SIBO and fructose intolerance test. Just waiting for insurance to approve it.

[murphy203]

This must be very hard for you. I know that before my son was dxd with type 1 diabetes, he kept getting inexplicably "sick", until his ability to produce insulin dropped too far, and he lost 15#s ppractically overnight on a 75# frame. I wonder if celiac disease has a similar profile -- gradually worsening conditions until a critical threshold is reached?

And it IS resonable to expect your doctors to be available for your questions, especially with child! I went through a period of neurological craziness, and I called my neurologist -- from Johns Hopkins, runs neuro-musular -- and asked him more than once -- are you sure I don't have ALS?? MS?? He ALWAYS spoke with me or returned my calls promptly. This is what you should expect.