Testing for Celiacs

[Alikat77]

Hi all

I was wondering if anyone diagnosed celiacs disease has experience a similar situation to mine.

I do not eat gluten free (yet) and have symptoms of celiacs or IBS. The usual type of symptoms - bloating, cramps etc.

I had two tests performed:

1.) duodenal biopsy (via endonoscopy) which showed some signs of celiacs as there was villous atrophy

2.) celiac serology (blood test) which was negative for celiacs disease 

Has anyone else found themselves in a similar situation and if so how did they manage it? 

My Gastro was not clear on whether I have celiacs and instead suggested an elimination diet to see if that will help so I plan to go gluten free, however, I am wondering how common this scenario is and how likely it is I actually have celiac given the biopsy results.

Thanks 

 

 

 

[trents]

Welcome to the forum, Alikat77!

Yes, we have numerous reports on the forum of people who test positive for villous atrophy and but are negative for blood antibody testing. Often this happens when only one antibody test is run from the several that can be run. Typically, physicians will run only the tissue Transglutaminase  IGA (aka,, tTG-IGA). It is the most popular blood test, combining relatively good sensitivity with relatively good specificity. And it is relatively inexpensive. But it can miss about 20% of people from white European extraction and about 80% of those from black African descent who actually do have celiac disease as confirmed by biopsy.  We wish physicians would run a "full celiac panel" to cover these antibody testing anomalies. Here is a primer: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/.

The biopsy of the villous lining is considered to be the gold standard of celiac diagnostic testing. The gastro doc's suggestion of trying a gluten free diet is a good one but keep in mind if you go gluten free now you would need to go back on gluten for 6-8 weeks to ensure that any future antibody testing would be valid. And typically, once you go off of gluten and try to go back on you will have more dramatic reactions to it.

[Scott Adams]

I agree with @trents and if I were in your shoes I would follow your doctor's advice and try a gluten-free diet for a few months and if your symptoms go away I would consider myself as having celiac disease. Here is some info that may be helpful: