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Parents, Friends and Loved Ones of Celiacs
Discussions among parents of kids or babies with CD. Non-celiacs can discuss their experiences dealing with a friend or loved one with the disease.
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Recent Activity
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- trents commented on Scott Adams's article in Oats: Are They Gluten-Free?1Gluten Contamination Common in European Oats and Gluten-Free Oat Only Products (+Video)
"When comparing gluten-free oat-only products with general gluten-free foods and ordinary oat products, the study found that gluten-free oat-only products had the highest contamination rate. For instance, gluten-free foods in general had contamination rates of around 18 percent, while oat-only products labeled gluten-free had rates nearing 73 percent. Ordinary...- 1
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- celiac disease
- cross-contamination
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- Scott Adams commented on Dr. Tom O'Bryan's article in Autumn 2005 Issue3Are Oats Gluten-Free?
This article is from: Journal of Gluten Sensitivity Autumn 2005 Issue. Bob's did not have GF oats back then.- gluten-free
- oat fiber
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- Scott Adams replied to Jenny (AZ via TX)'s topic in Gluten-Free Foods, Products, Shopping & Medications1
Does Dailymed.nlm.nih.gov site have filters for gluten?
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... -
- Yaya commented on Dr. Tom O'Bryan's article in Autumn 2005 Issue3
Are Oats Gluten-Free?
After confirmed diagnosis 13 years ago my gastro insists on periodic endoscopies every 3 years to be sure I'm as gluten-free as I think I am. I come out perfectly clean. Bob's Red Mill gluten-free products have been my go-to, but they are not listed. I'm curious as to why.- gluten-free
- oat fiber
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By Scott Adams · Posted
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/ -
By Scott Adams · Posted
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. -
By Scott Adams · Posted
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. -
By Scott Adams · Posted
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: -
By Scott Adams · Posted
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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