Previous Biopsy Results

[Katya773]

Hello:). This a lengthy post. Just looking for some advice. I had the capsule study back in 2019  I tried the gluten challenge but got so horribly distended and could finish it, I had been gluten-free since 2016 except for occasional accidental ingestion. However In 2019 I saw a gastroenterologist due to nonstop diarrhea and bloating. No diagnosis of Crohns or ulcerative colitis. After my biopsy I went to see the doctor and he said I could eat gluten bc my risk wasn’t high. However his nurse practitioner called me later and said I had Celiac?! What the heck??? So I stayed gluten-free. 

How confusing! These are partial-biopsy results from 2019.

*Signifi retained food stomach/SB. Mult ulcers jejunum/ileum-petechiae, damaged villi, lymphangiectasia.

I am DQ2.5 homozygous, my mom has Celiac. Apparently being DQ2.5 homozygous puts Celiacs at risk for refractory Celiac and EATL… How scary and this is another reason why I want to be sure of my diagnosis. 

Fast forward to now ,last year  I lost 18 lbs bc I felt so full after small amounts of food and had constant nausea. It comes and goes. Usually I can trace my symptoms to accidental gluten ingestion. Didn’t know Wheatgrass is a no no 😕 I have a new Gastro and he said try another challenge and pill endoscopy. So I did my best  but yet again I didn’t complete it. I’m torn if I should go ahead and try the challenge again like my Gastro  recommended.

This whole thing has been so draining. I lost my dad to suicide  a few months ago and my twos cats died within 6 months of each other, my stress levels have sky rocketed. Not feeling well off and on makes it harder to stay positive. 

 

[Scott Adams]

Your situation is incredibly frustrating and emotionally draining, especially with the conflicting biopsy results, unclear diagnosis, and the added stress of personal losses. Given your DQ2.5 homozygous status, family history of celiac, and past biopsy findings (damaged villi, ulcers, lymphangiectasia), the evidence strongly suggests celiac disease—despite the initial doctor’s dismissal. The nurse practitioner’s call likely reflected the biopsy’s concerning details, even if not formally labeled "celiac." Your severe reactions to gluten, including weight loss, nausea, and bloating, further support this.

The gluten challenge is notoriously difficult, especially for sensitive individuals, and your physical and emotional strain makes it even harder. Since accidental gluten already triggers symptoms, a formal challenge may not be necessary for clinical certainty—your genetic risk, family history, and prior biopsy abnormalities might suffice. If your new GI insists, consider whether a supervised, modified challenge (or even genetic + antibody testing without reintroduction) could provide answers without extreme suffering.

Most importantly, prioritize your mental health—grief and stress exacerbate physical symptoms. A dietitian specializing in celiac or a therapist could help navigate the emotional toll. Trust your body’s signals; if gluten makes you ill, staying gluten-free is valid regardless of diagnostic ambiguity.

[Katya773]

Hi thank you so much for your input. It’s been very difficult to navigate this whole Celiac thing with everything that’s happened.

What you said makes sense. I  have a better understanding of how my doctors NP was able to give me a diagnosis. 
Yes I agree that staying gluten-free is best, I’ve been doing some research and it seems like DQ 2.5 homozygous does make folks extra sensitive to gluten even without a celiac diagnosis.

My new gastroenterologist put me in touch with a nutritionist but I’ll have to inquire if they specialize in Celiac.

Appreciate the advice 🙏🏼