Gluten intolerance tests

A lot of PSC’ers seem to avoid gluten after PSC diagnosis and some of them are diagnosed with celiac disease along with PSC/UC. Are all of you getting tested with blood work+biopsy for celiac disease or doing other tests like fecal anti-gliadin-igA? How much trust should we put on these supplemental tests?

My son tested negative for tTG-IgA via serum tests last year and working with a functional practitioner now (UCSF/Stanford trained family medicine doctor who does functional medicine too), we did few additional tests (urine/fecal) to learn more about his leaky gut. His numbers seem to be high suggesting dietary gluten intolerance. But physician’s/GI’s don’t seem to put that much confidence in these tests as they are not that reliable in screening patients accurately as per https://www.cureceliacdisease.org/faq/why-dont-you-recognize-tests-stool-tests-or-otherwise-for-gluten-sensitivity-that-are-currently-available-through-companies-like-enterolab-or-cyrex/. We did our tests from enterolab. Before these tests, we mostly eliminated gluten from his diet already but not completely.

Fecal Anti-gliadin IgA      148 Units   (Normal Range is less than 10 Units)
Fecal Anti-casein (cow’s milk) IgA      24 Units   (Normal Range is less than 10 Units)
Fecal Anti-ovalbumin (chicken egg) IgA      20 Units   (Normal Range is less than 10 Units)
Fecal Anti-soy IgA      20 Units   (Normal Range is less than 10 Units)

I was tested for celiac and don’t have it. However I am sensitive to gluten as it gives me miserable itching and eczema type symptoms. As soon as I stop eating it my itching stops. I have worked this out for myself as no doctors have ever suggested I stop gluten to treat the itching and I can find very little info on the internet. I tried stopping gluten one day and I was able to throw all my steroid creams in the bin. I feel that there is definitely a link to the Psc as it seems to have got worse over recent years.

My 6 year old son used to have eczema issues for the past few years but we couldn’t relate to gluten directly before but the flares up used to happen on mostly hot and dry weather times and controlled via mometasone steroid cream. We haven’t used that cream in the past year and half though. During the past year, we certainly noticed that giving iron supplements will make his eczema go away. May be once we lean off prednisone completely, we can try his response to gluten again closely.

Yep, as we learn more about this, there seems to be a common theme and definite link between gluten, itching, anemia in psc population.

Good to hear iron supplements has helped your sons eczema. Anything that allows us to take control of symptoms is a good thing. I am convinced more than ever that psc is a gut related disorder as mine developed in parallel to my gluten intolerance which seems coincidental.