Damage after 13 years gluten free

[RMJ]

I’m frustrated with celiac disease and my current gastroenterologist (GI).

I’ve been gluten free for almost 13 years, with normal antibodies for almost 8 years - except for one excursion of my DGP IgA 5 years ago which returned to normal when I changed brands of gluten free flour.

All 4 celiac antibodies were positive 13 years ago but I didn’t have an endoscopy for reasons unrelated to celiac disease.  I did have one 9 years ago. The DGP IgA was still slightly elevated, GI saw some blunted villi visually, biopsy showed “patchy mild increase in intraepithelial lymphocytes” and “focal mild villous blunting” (Marsh 3A).

For the past few years I’ve had intermittent trouble with nausea and stomach pain so my current GI suggested doing a repeat endoscopy. He saw nothing visually, but biopsy showed “focal mild intraepithelial lymphocytosis” and “minimal focal villous blunting”.  All I got was a letter from the GI and his nurse that said there were mild changes consistent with celiac disease. I sent a message to the doctor asking where I go from here but just got an answer from a nurse saying it is better, less damage than 2016 so keep following the gluten free diet. So focal is better than patchy for increased lymphocytes and minimal focal is better than focal mild villi blunting?

I feel this biopsy result after 13 years deserves some discussion, but this doctor never answers messages, his nurses just give out canned responses, it takes 6 months to get an appointment, and his only suggestion for nausea and pain was more soluble fiber.

I’ve read that adults may not heal completely on a gluten free diet but with normal antibodies for years I was not expecting this result. I have made an appointment with a different GI who hopefully is more communicative.

Rant over. Thanks for reading.

[Wends]

Hi RMJ.

I read your post. Sounds like you need a second opinion?

Have you been advised by Dietitian or referred to one? There are protocols for treating patients that have ongoing celiac disease antibodies / histology. Particularly as you have nausea and pain.

You probably already know about the gluten contamination elimination diet. It may be that you are super sensitive to even the allowed 20parts per million gluten in certified gluten free flours and products? An elimination of all grains for a time may be necessary? Especially oats if you currently include them? It’s worth noting that a minority of Celiacs have oat intolerance and T cell response similar to gluten (particularly carriers of high risk HLADQ2.5), and ongoing celiac damage to the gut can occur with oats. Even certified gluten free oats.

If you are already super strict and careful about cross contamination, do you eat cheese or have any cow’s milk in your gluten free diet? It’s often overlooked, even by specialists and Celiac dietitians. But there are case study reports in children. There’s a study in adults showing mucosal reaction to casein in Celiacs, and quoted 50% of Celiacs react to casein similar to gliadin because of molecular mimicry. Then there was this letter to the editor following up a case that states,

”We conclude that given this novel information, pediatric, and possibly adult, celiac disease patients with suspected “refractory” celiac disease and no detectable gluten exposures, should be trialed on a combined CMP-GFD with close monitoring for disease activity resolution prior to consideration of more restrictive diets…” (Jericho H, Capone K, Verma R. Elimination of Cow’s Milk Protein and Gluten from the Diet Induces Gut Healing in “Refractory” Pediatric Celiac Patients. Ann Pediatr. 2021; 4(2): 1082.)

CMP-GFD: cow’s milk protein-gluten free diet.

Hope you figure it out.

 

[RMJ]

@Wends Thank you for your thoughts. I am going to go to a different GI in September (first available appointment) who will hopefully give me more guidance than my current GI, who has given me none.

I would call my antibody levels super sensitive, but not symptoms. Eating purity protocol certified gluten free oats does not affect my antibody levels.  I’m not sure the nausea and pain are gluten related, they correlate pretty well with anxiety.

I hope I don’t have to give up milk! Unfortunately, since my antibody levels are normal and the pain/nausea might not be gluten related, the only way to know for sure if a dietary change helps might be another endoscopy.

 

[Scott Adams]

Your frustration is completely understandable—after 13 years of strict gluten-free living and mostly normal antibody levels, it’s disheartening to still see biopsy evidence of lingering damage, especially without clear guidance from your GI. The subtle improvements (like "focal" vs. "patchy" changes) might suggest some healing, but the persistent villous blunting and lymphocytosis raise valid concerns about ongoing low-level inflammation, cross-contamination, or even refractory celiac disease (though your normal antibodies make this less likely). It’s especially frustrating when your symptoms (nausea, pain) are dismissed with generic advice, and communication feels like a game of telephone with nurses.

Switching to a more engaged GI is a great step—someone who’ll actually discuss your biopsy results, explore potential hidden gluten exposures (e.g., medications, shared kitchens), and investigate other culprits (like SIBO, motility issues, or food intolerances that often overlap with celiac). Hang in there—you’re advocating for yourself the right way, and your dedication deserves answers, not canned responses. Hope the new GI provides the clarity you need!

[RMJ]

Update: I have a wonderful new gastroenterologist. She wants to be sure there’s nothing more serious, like refractory celiac, going on. She ordered various tests including some micronutrient tests that no one has ever ordered before.  I’m deficient in folate and zinc and starting supplements for both. I’m so glad I decided to go to a new GI!

[Scott Adams]

It's great to hear that there are some good doctors out there, and this is an example of why having a formal diagnosis can definitely be helpful.