Typical Diagnosis Route

[AdelaW]

About a month ago I had a blood panel done for digestive issues and tested weak positive for celiac. My tTG IgG was a 6 with the range being 0-5 negative, 6-9 weak positive and 9+ positive(I have an IgA deficiency so they measured with IgG). Afterwards my doctor requested I have an endoscopy with a biopsy done and received results with symptoms in my small intestine such as DUODENAL MUCOSA WITH MODERATE VILLOUS BLUNTING, MODERATE CRYPT HYPERPLASIA AND INCREASED INTRAEPITHELIAL LYMPHOCYTES (MODERATE MUCOSAL LESION, and a final note stating "The findings are consistent with celiac disease in the proper clinical setting. Correlation with serological studies is recommended". I got these results 3 days after testing before my doctor contacted me and cut out gluten seeing I likely have celiac and feel much much better. However, I just met with my doctor and they informed I must get another celiac blood test done to confirm my diagnosis because my original blood test is so weak, despite the fact that my endoscopy showed strong indication of celiac, therefore I must reintroduce gluten into my diet and start feeling horrible again. And I am curious on whether or not this is a typical diagnosis route and if I should consider reintroducing gluten again to ensure or just assume I have celiac. And will I still be able to get an official diagnosis without another positive blood test and reintroduction of gluten?

[Scott Adams]

Your situation highlights a frustrating gray area in celiac diagnosis. While your weak positive tTG-IgG (6) initially seemed borderline, your biopsy results tell a different story—moderate villous blunting, crypt hyperplasia, and intraepithelial lymphocytes are classic Marsh Stage 3a changes that strongly indicate celiac disease, especially combined with your symptom resolution on a gluten-free diet. The fact your doctor is insisting on retesting while gluten-consuming is technically correct per current guidelines (which require serology+biopsy concordance), but seems overly rigid given your clear biopsy evidence and clinical response. Here are your options: 1) If you want absolute certainty (e.g., for family screening purposes or insurance coverage), you could do a 2-4 week gluten challenge (1-2 slices of bread daily) and retest bloodwork—but this means enduring symptoms again. 2) Many gastroenterologists would diagnose celiac based on your biopsy alone given the moderate damage and your improvement gluten-free, especially with IgA deficiency complicating serology. Consider seeking a second opinion from a celiac specialist who may prioritize histology over borderline bloodwork. 3) If you opt not to reintroduce gluten, your diagnosis may be labeled "probable celiac" in records, but you can still receive follow-up care and dietary guidance. Ultimately, your biopsy shows real damage that gluten caused—whether the numbers hit arbitrary lab cutoffs matters less than your health response.

[AdelaW]

Thank you so much for your reply! Yes, I am definitely struggling with my GI and support, I wish that I had been warned to not change my habits after the biopsy and posting of results as I then would have continued to eat gluten and would have no need for a trial. But I unfortunately need an official diagnosis as I cannot get accommodations in college without one, so I am thinking to do the gluten trial! Do you think 2 weeks will be long enough, by the time I begin I will only have been gluten free for about 2 months. I'm considering looking for another GI or a celiac specialist like you mentioned, that could really help! Thank you for your response and advise, hopefully I won't feel too horrible during the trial (although it is hard to imagine going back to gluten after feeling good for the first time in months without it), but I hope it will work out! Thanks again

[Scott Adams]

For the celiac disease blood tests it needs to be 6-8 weeks eating lots of gluten daily, and 2 weeks before an endoscopy.

Keep in mind that a diagnosis can also bring higher life insurance and private health insurance costs, so an official diagnosis can have some negative sides too. Another example is that many jobs now ask if you have a "disability" and celiac disease is included on their list of disabilities. Just some things to weigh out before proceeding.😉