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Celiac Disease Pre-Diagnosis, Testing & Symptoms

If you haven't yet been diagnosed this is the place you can discuss your symptoms and any test results that may indicate that you might have the disease.


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    • Scott Adams
      There isn't because there is currently no gluten-free labeling requirement for prescription medications. You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      Since they make not "gluten-free" claim on their site: https://purito.com/product/new-oat-in-calming-gel-cream/ I'd treat this as though it contains small amounts to gluten, but I just want to mention that skin contact with gluten isn't an issue for the vast majority of celiacs. 
    • Scott Adams
      Your frustration is completely valid and speaks to a massive, systemic failure in how chronic autoimmune conditions like celiac disease are managed and tracked. You are absolutely right—it is not right. While reportable diseases typically refer to acute infectious outbreaks that require immediate public health intervention (like measles or foodborne illness), the spirit of your point is crucial: the lack of a centralized registry or formal tracking for celiac means patients are often left to navigate a maze of medical gaslighting and ignorance on their own, exactly as you've experienced for decades. This dismissal has real and devastating consequences on mental and physical health. Channeling your anger into advocacy is a powerful and necessary response. Starting with local representatives, your state's health department, or patient advocacy groups (like Beyond Celiac or the Celiac Disease Foundation) to lobby for better physician education and systemic recognition could be a impactful way to turn your painful experience into a force for change, so others don't have to suffer the same nightmare. You are not alone in this fight.
    • Scott Adams
      I am so sorry you went through such a terrifying and severe reaction; that sounds absolutely awful and it's completely understandable that you ended up in the ER. Unfortunately, pizzerias are indeed one of the highest-risk places for cross-contact, as gluten-containing flour can stay airborne for hours and contaminate surfaces, utensils, and even the gluten-free ingredients. For your recovery, the best course is to continue exactly what you're doing: prioritize rest and hydration with electrolytes like Pedialyte, as your body has been through a massive ordeal. Stick to very simple, easy-to-digest foods like bone broth, plain rice, bananas, or applesauce for the next few days to avoid further upsetting your system. Be patient with yourself, as the weakness and fatigue can linger for a while as the inflammation subsides. It's a brutal reminder of how serious this is, and while it's devastating that one of your rare meals out went so wrong, your caution is completely justified. I hope you feel back to 100% very soon. This article, and the comments below it, may be helpful:    
    • Scott Adams
      You can search this site for prescriptions medications like "hydrochlorothiazide," but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
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