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Post Diagnosis, Recovery & Treatment of Celiac Disease
Discussions related to the recovery process after you've been diagnosed.
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Recent Activity
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- Heatherisle replied to Heatherisle's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms22Blood results
I have heard of NCGS, but everything is just so confusing!!! Just unsure of things as her EMA test was negative but TTG was positive @19u/ml(lab range 0.0-7.0).Apparently she also has occasional bubble like blisters in between her fingers, don’t know if that’s significant. She is triallling gluten free as suggested by the gastroenterologist after her end... -
- sillyac58 posted a topic in Gluten-Free Foods, Products, Shopping & Medications0Rice Flakes
I ame looking for rice flakes that aren't cross contaminated to use in making oat free granola. Does anyone know of a brand? Also I see that some people just used puffed rice cereal, but it seems like that wouldn't be sturdy enough to withstand the mixing without crumbling. Any ideas out there? Thanks! -
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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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- 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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By Heatherisle · Posted
I have heard of NCGS, but everything is just so confusing!!! Just unsure of things as her EMA test was negative but TTG was positive @19u/ml(lab range 0.0-7.0).Apparently she also has occasional bubble like blisters in between her fingers, don’t know if that’s significant. She is triallling gluten free as suggested by the gastroenterologist after her endoscopy. Keep getting different answers when typing in her symptoms etc. Some sites say it can be possible to have coeliac, even with a negative EMA . It’s so frustrating and her anxiety levels are through the roof. I know she’s hoping it’s coeliac which is weird I know!!! But if it’s not it just means more tests. Sorry to ramble on!!! -
I ame looking for rice flakes that aren't cross contaminated to use in making oat free granola. Does anyone know of a brand? Also I see that some people just used puffed rice cereal, but it seems like that wouldn't be sturdy enough to withstand the mixing without crumbling. Any ideas out there? Thanks!
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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.
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