I'm stumped...

[Ashtae]

For several years now I have been experiencing near constant bloating, gas, diarrhea (lots of mucus), occasional constipation, and will sometimes have these gastric episodes that come on very quickly (often within 30 minutes eating) that are so painful they make me break out in a cold sweat and sometimes feel like I'm going to pass out.

I visited a gastroenterologist two years ago and they found I had a positive anti-deamidated gliaden IgA Ab (23), but negative IgG and negative anti-TTG Ig A and IgG. My duodenal biopsies were normal. Genetic testing showed I was a carrier of HLA DQ 8 allele, but negative for DQ 2. We did find that I had h pylori which I was treated for, and my episode seemed to decrease for a little bit after that. But they are now back to the same severity they were previously. My gastroenterologist basically said that while he didn't believe it was Celiac, he couldn't rule it out.

I'm not sure if I think this could be celiac, if maybe I have just a gluten sensitivity, or maybe it's something different like IBD? I tried a gluten-free diet for about a month, but I admittedly did it poorly and ended up quitting because I was having constipation related pain.

[trents]

You seem to have considered all the viable options. How can we help you? It would seem to me your next logical step would be to get serious about going totally gluten free for several months and see if your symptoms improve significantly.

[Ashtae]

I suppose I was just looking to see if anybody had experienced the similar journey in getting diagnosed. Or if this seems like it wouldn't be Celiac at all?

I will say that when I attempted to be gluten-free I ended up being extremely constipated, which was also deeply uncomfortable but just in a different way lol. So tips on maintaining a gluten-free diet without running into those problems might also be very helpful!

[trents]

The blood work results you describe combined with the symptoms you list could point to either celiac disease or NCGS (Non Celiac Gluten Sensitivity) or a transition from NCGS to celiac disease. The two share many of the same symptoms and some experts feel that NCGS can be a precursor to celiac disease. The blood work results you describe and the symptoms you describe put you in a "tweener" space which has been very commonly reported on this forum. You have one of the two or more genes that have been associated with the "potential" to develop celiac disease but which do not ensure that you will develop celiac disease. About 40% of the population has a genetic profile that affords the potential to develop celiac disease but only about 1% of the population actually develops celiac disease. 

Concerning your constipation issue when attempting to eat gluten free, keep in mind that you probably eliminated a considerable amount of the fiber content you were getting before. Most gltuen free flours and most commercially prepared gluten free facsimile foods are low in fiber and low in nutrition compared to their wheat alternatives. The FDA does not require gluten-free flours to be fortified with vitamins and minerals as they do their gluten counterparts. So, to address the constipation problem when eating gluten free, work at increasing fiber trough increasing fruit and vegetable consumption and/or using a gluten-free fiber product like psyllium husks. The FDA RMDA (Recommended Daily Amount) for fiber is 25-30gm for adults. Including about 400mg of magnesium glycinate as a supplement may also help as it encourages peristalsis.

 

[Ashtae]

Thank you, this has been so incredibly helpful!