Husband is intolerant of something, but what?

[breezyinburi]

So my husband and I did 23 and Me + health genetic testing. He came back with carrying some markers that many people with celiacs also carry. He has had intense stomach pain since high school and has been scoped, but they never really found a specific issue. He decided to try cutting out gluten for a week and before the week was up, the pain was gone. He was shocked.

So he kept it cut out, but slowly started testing the waters to see how intolerant he was. Shared fryers usually aren't a concern, he can do soy sauce and some other sauces, etc. Well, he got desperate when I went out of town and decided to eat pasta with the kids. Surprisingly, he had no reaction. So he tried a burger with a regular bun- and was in pain for about 8-12 hours. After repeating these tests with similar results, I decided to make him some gluten free bread with yeast to test out if it was perhaps the yeast he was having issues with in the breads and perhaps that was why noodles were okay for him. He didn't have any reaction to this bread though, and it contained similar amounts of yeast to the bread I normally bake at home. He has since successfully had a few crackers and all types of pastas without issues. But traditional breads of any kind consistently cause issues for him. I have some sourdough starter going to try that for him soon in a baked bread, but I did fry up some sourdough discard today as pancakes and he didn't react to that either. 

 

I am so confused! I don't know what he should be avoiding but it is staring to seem like he isn't actually gluten intolerant and perhaps it is something else. Or the yeast and gluten are together causing an issue? Is that even a thing? Somebody help me understand what could be happening. His reactions, when he has them, are intense stomach and intestinal pain with diarrhea. 

[breezyinburi]

Additionally, he had a piece of store bought cake before (which I understand does not have yeast in it) and also had the sane reaction he has with bread. He has had gluten free cakes without reaction. So far, I have not found a gluten free product that he reacts to. 

[trents]

He could have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms with celiac disease but for which there is not yet any diagnostic testing available. It does not do damage to the small bowel lining as does celiac disease so it does not produce antibodies that can be detected by a blood test or and, of course, a biopsy of the small bowel lining would be negative. A diagnosis of NCGS is arrived at by first ruling out celiac disease.

My suggestion is that you need to feed you hubby generous amounts of wheat products daily for at least three weeks, the ones he seems to tolerate, and then have celiac antibody testing done. Ask for these tests:

1. Total IGA, 2. TTG-IGA, 3. DGP-IGA and 4. DGP-IGG

Push for these four tests which is a more complete celiac panel. Many docs will only order minimum testing consisting of the TTG-IGA.

If the antibody testing is negative, he could have NCGS or something else is causing this reaction pattern. First, however, see if you can eliminate celiac disease.

Edited June 9, 2024 by trents

[knitty kitty]

@breezyinburi,

Different types of flours are used for different types of breads, cakes, and pasta.  Some types of flour contain different amounts of gluten. 

Your husband would do better getting a proper diagnosis by an endoscopy with biopsies after a gluten challenge (a diet high in gluten - 10 grams a day) by a gastroenterologist, along with blood antibody tests. 

Best wishes.

Edited June 9, 2024 by knitty kitty
Typo correction

[trents]

About 10g of gluten is found 4-6 slices of wheat bread, just to give you an idea of what that looks like in real food servings. That should be followed for several weeks leading up to either the antibody testing or the endoscopy/biopsy.

Edited June 9, 2024 by trents

[MM19]

Longtime sufferer here...Personally, I feel like if he has the genetic markers for Celiac, it is best to AVOID gluten.  (My physician echoes this sentiment). Also, sometimes it takes a day or two or three to react to the contamination... so he could have had the pasta and felt OK, but by the time he ate the burger bun, it was too much.  If he can completely cut out the gluten, I suspect he will feel better than he has in a long time.