Positive biopsy, negative blood test

[Mrami023]

I was referred to a gastroenterologist due to me having Diverticulitis, but since i had lots of other symptoms mainly unexplained nausea & vomiting every time i eat out they did an endoscopy and i was not aware that its recommended to be eating gluten before endoscopy if they suspect celiac since they didn’t with me, i normally was already cutting gluten without really trying since it makes me sick but never knew about gluten allergy, well they did a biopsy and they suspected i was on the early stages of celiac and the GI send me to get a blood test to confirm when we got the results they where negative for celiac, and told i could eat it but my primary care doctor & nutritionist told me they should of diagnosed me with celiac because the endoscopy is the gold standard to diagnosed celiac disease & was not eating enough gluten so im very confused and wanted to see if anyone have experience this before and thinking if i should look for a second opinion. Thank you.

[Mrami023]

Forgot to mentioned that after learning of celiac disease i have lots of the symptoms 

 

[trents]

Welcome to the forum community, @Mrami023! Your experience is very common. Many people don't get tested for celiac disease until after they have started eating gluten free or at least started cutting back on gluten. They don't necessarily know any better and no one has told them that this may invalidate testing, either the antibody blood testing or the scope/biopsy or both. As a matter of fact, many doctors neglect to inform their patients of this when testing for celiac disease.  Life happens. We do  things in the order that makes sense to us at the time based on the knowledge we have at that time.

Yes, the endoscopy with biopsy is considered to be the gold standard of celiac disease diagnosis. So, given the results of the biopsy and the sequence of events that led up to it, it makes sense to conclude that you have celiac disease. If you are feeling compelled to go through with proper blood antibody testing to confirm the biopsy results, you would need to resume eating significant amounts of gluten for three weeks or more in the amount of 10g. daily (about 5 slices of wheat bread) leading up to the day of the blood draw.

Your other reasonable option would be to assume you have celiac disease and commence gluten free eating whole heartedly and see if your symptoms improve. I will include a link for getting off to a good start with achieving a gluten free eating status.

Oh, yes. Celiac disease is not an allergy to gluten. It is an autoimmune disorder in which the consumption of gluten triggers inflammation in the small bowel that damages the lining of the small bowel.

 

 

Edited May 11, 2024 by trents
Almost forgot to include the link I mentioned.

[Mrami023]

Thank you for the response, i will probably do the blood test to confirm later but as for now i will do a gluten free diet i need to feel better, and am just scared to be wrongly diagnosed since i been before with my diverticulitis, with my grandma dying from stomach cancer 20 years ago but no one can confirm if she had celiac disease since im not sure they where testing for that back than and my mom has symptoms but refuses to do the endoscopy & colonoscopy, im just glad i was able to get the doctor to do both on me hopefully this helps after years of having food making me sick without knowing why. Your comment was very helpful and made me feel better about my decision. Thank you