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Coping with Celiac Disease
Share stories, techniques, and information to help others deal with the disease and the gluten-free diet.
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Recent Activity
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- pmarklesparkle replied to pmarklesparkle's topic in Dermatitis Herpetiformis2Best apps for people with celiac
Thank you, Hopeful! I've downloaded both of those apps and will try them out. Much appreciated! -
- Thelma Cadieux replied to Itchyperson's topic in Dermatitis Herpetiformis27Cycle of dermatitis herpetiformis
Thanks but I will check it out with my doctor, usually stress will trigger it, -
- Hopeful1950 replied to Itchyperson's topic in Dermatitis Herpetiformis27Cycle of dermatitis herpetiformis
Has any doctor suggested taking a round of Dapsone? If you have dermatitis herpetiformis, dapsone will clear it fairly quickly. It is not a drug you would want to take forever, but when all else failed my doc had me take it as a way to determine if it was dermatitis herpetiformis. Sure enough it worked like a miracle and itch stopped and after 2 months... -
- Hopeful1950 replied to pmarklesparkle's topic in Dermatitis Herpetiformis2
Best apps for people with celiac
I use an app called Spoonful where you can scan labels and it will tell you whether it is safe, questionable (and why) and also something you can substitute. It also makes it easier to see what is on the label. There are some ingredients that I avoid in addition to gluten. You can also search the app by a category. I just searched on "cosmetics and... -
- Scott Adams replied to Soleihey's topic in Related Issues & Disorders3Gluten Ataxia and Malabsorption
It took me 2-3 years to feel like my gut recovered, and then I still had gluten ataxia issues for well over a decade. This study indicates that a majority of celiacs don't recover until 5 years after diagnosis and starting a gluten-free diet: Mucosal recovery and mortality in adults with celiac disease after treatment with a gluten-free...- 1
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Posts
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By pmarklesparkle · Posted
Thank you, Hopeful! I've downloaded both of those apps and will try them out. Much appreciated! -
By Thelma Cadieux · Posted
Thanks but I will check it out with my doctor, usually stress will trigger it, -
By Hopeful1950 · Posted
Has any doctor suggested taking a round of Dapsone? If you have dermatitis herpetiformis, dapsone will clear it fairly quickly. It is not a drug you would want to take forever, but when all else failed my doc had me take it as a way to determine if it was dermatitis herpetiformis. Sure enough it worked like a miracle and itch stopped and after 2 months the rash cleared. Then I embarked on figuring out how to eat to avoid the breakouts. It is my understanding that once you expose to gluten, the reaction happens and antibodies are deposited in your skin. They can blister right away or hang around for a long time and get "activated" by other things like your monthlies, pressure, stress etc.... It makes it difficult to diagnose and difficult to manage. -
By Hopeful1950 · Posted
I use an app called Spoonful where you can scan labels and it will tell you whether it is safe, questionable (and why) and also something you can substitute. It also makes it easier to see what is on the label. There are some ingredients that I avoid in addition to gluten. You can also search the app by a category. I just searched on "cosmetics and a few things popped up as compliant. I think the app is mainly focused on food. When I first started out reading labels was a nightmare and it took me so much time at the store. This app has really helped me when I am looking at something new. They update frequently, and if something isn't in their data base there is an AI function where you can enter the information from the label and it will analyze it right away for you. I have used an app called Find Me Gluten Free in the past when I am traveling to find restaurants. People's reviews are very helpful because even when a restaurant claims to be able to accommodate, often people will find out differently and they report it on reviews. Hope this helps. -
By Scott Adams · Posted
It took me 2-3 years to feel like my gut recovered, and then I still had gluten ataxia issues for well over a decade. This study indicates that a majority of celiacs don't recover until 5 years after diagnosis and starting a gluten-free diet: Mucosal recovery and mortality in adults with celiac disease after treatment with a gluten-free diet However, it's also possible that what the study really shows is the difficulty in maintaining a 100% gluten-free diet. I suspect that if you looked closely at the diets of those who did not recover within 2 years might be that their diets were not 100% gluten-free. Perhaps they ate out more often, or didn't understand all of the hidden ingredients where gluten can hide. Either way, it shows how difficult recovery from celiac disease can be for most people. According to this study: This article explores other causes of flattened villi:
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