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Good idea, @LynnM! That would be helpful to other celiacs who find themselves on the more sensitive end of the spectrum. You might also want to send them information about how to initiate the process with GFCO. But just a word of caution here, don't be surprised if the company is reluctant to pursue this certification as it can tie their hands with regard to changes in formulation in the future. Manufacturers often make ingredient decisions not only based on desired product outcomes but on cost factors. It can also put them at a liability risk should some ingredient supplier introduce an ingredient that was cross-contaminated with gluten without knowledge and cause someone to have a reaction. Testing for gluten-free certification is not done as frequently as consumers imagine and products can and do get out of spec at times. And once you slap a gluten-free certified label on a product, you are instantly open to possible liable suites. 

Hi Everyone. I just heard back from my son's GI doc and nutritionist. SHIELD products ARE gluten free. I am going to ask the company to Pursue gluten-free certification. 

Your experience highlights a common frustration in celiac disease diagnosis—discrepancies between lab results, biopsy findings, and clinical symptoms. The "localized mild nodular mucosa" noted in your duodenal bulb could indeed be significant, even if the overall pathology was deemed negative. Nodularity in the duodenum is often associated with lymphocytic infiltration, a feature seen in early celiac disease (before villous atrophy develops) or in conditions like H. pylori infection, chronic inflammation, or even food sensitivities (e.g., gluten or dairy). Since you had strongly positive celiac labs (e.g., TTG-IgA, EMA, or DGP), this nodularity might reflect an early or patchy immune response to gluten that wasn’t severe enough to meet traditional biopsy criteria (Marsh 3 damage). Some studies suggest nodular mucosa can precede classic celiac changes, especially in seropositive patients. Given your lab results and symptoms, it’s possible you have non-celiac gluten sensitivity (NCGS) or are in an early stage of celiac where damage isn’t yet widespread. False-negative biopsies aren’t uncommon due to sampling error (celiac can be patchy) or misinterpretation of subtle changes. If you’re still symptomatic, you might discuss repeat testing (e.g., HLA-DQ typing if not already done, or a gluten challenge with both serology and biopsy) or consider a capsule endoscopy, which can visualize more of the small intestine. Alternatively, H. pylori testing or a trial of strict gluten-free diet with symptom monitoring could provide clarity. Your case underscores the importance of correlating labs, histology, and clinical response—not just relying on biopsy alone. A second opinion from a celiac-savvy GI could be worthwhile!

The burning sensation you describe—particularly upon waking or after exercise—could indeed be related to systemic inflammation, which is common in autoimmune conditions like Hashimoto's and celiac disease. Gluten exposure, even in small amounts, may trigger an immune response that exacerbates inflammation, leading to the achiness and burning you feel, especially in areas like your hips and chest. Stress and poor sleep can further worsen inflammation, creating a cyclical effect. The fact that these symptoms improved before your gluten challenge but returned afterward strongly suggests a connection to gluten sensitivity. Additionally, prolonged immobility during sleep might contribute to stiffness or discomfort, but the burning sensation points more toward an inflammatory or neurological component. Your heightened food sensitivities and digestive issues could indicate ongoing gut dysfunction, possibly due to intestinal permeability ("leaky gut") from gluten exposure or autoimmune activity. Since exercise also triggers symptoms (except during your remission period), it may be worth exploring gentle movement like yoga or walking to avoid overexertion while supporting circulation. Consulting a healthcare provider familiar with autoimmune conditions—particularly one who can guide you through targeted testing for celiac (without a full gluten challenge) or assess for other triggers like histamine intolerance—might help clarify next steps. In the meantime, prioritizing anti-inflammatory foods, stress management, and restorative sleep could provide some relief.

Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: