Thoughts/Opinions (kinda long)

[selectivefocus]

Background:

Myself and my 3 daughters were gluten free from October 2017 to Thanksgiving 2019. We have never been diagnosed as Celiac although it runs strongly on my dad's side. A lot of our issues were solved but other ones cropped up.

I noticed my 8 year old developed a bumpy itchy rash on her elbow after eating gluten for a few months (February 2020). It was very similar to the rash she developed on her knees after a 6 week trial of gluten free when I reintroduced her to gluten back in 2017. I determined this was likely DH. In the past 2 weeks she has developed a burning itchy rash in her armpits that seems to come and go.

In April of this year, she starts complaining of stomach and urinary pain. It's been a nightmare 3 months. She was treated for a uti but it never fully went away. Then she came down with salmonella poisoning and was hospitalized for 4 days. Then she ended up with a salmonella UTI. She's had major yeast issues and chronic periumbilical stomach pain and urethritis that is very persistent. When we were in the hospital in May, the dr kept asking if she had an underlying condition like crohn's because she was in such excruciating pain. I said celiac runs on my dads side. They refused to test. Finally after trying to heal her at home for 2 months and judging her food reactions, I had her pcm do a celiac panel. Everything was normal except for Tissue Transglutaminase Ab IgG. The result was a 6 and the range was 0-5. So, a "weak positive".

I know with celiac you have to be biopsied for diagnosis most of the time. I really have no interest in doing this for my child. Would you consider this "gluten sensitive" or something more? Is her villi damaged given the "weak positive"?

 

[cyclinglady]

I am sorry your daughter  is unwell.  I assume she has continued to be on a full gluten diet since 2/2020 despite her DH type rash.  If not, all celiac testing would probably be invalid.   Her TTG test result  is not common.  I could only recommend a GI consult or see a dermatologist (DH/Celiac savvy) for a special skin biopsy.   I thought for sure my niece has Celiac disease, but that was firmly ruled out (all blood tests and endoscopy).  Turns out she has  Crohn’s.  😥

[RMJ]

Did the celiac panel include DGP (deamidated gliadin peptides)?  Some panels include it, some don’t.  Some people are only positive on the DGP test.

Unfortunately, the degree of positivity on the celiac antibody tests don’t necessarily correlate with the amount of villi damage.