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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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My daughter is celiac, she had the Moderna vaccines dose and now, she has Chronic Pericarditis. She is almost twenty five year old. 1 2
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Recent Activity
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- MauraBue posted a topic in Gluten-Free Foods, Products, Shopping & Medications0Have Tru Joy Sweets Choco Chews been discontinued??
Help! My 5 year old daughter just stopped eating dairy and gluten due to her EoE and Celiac. Her favorite candy in the world is tootsie rolls. I did some research, and it sounds like these are the only options for finding something similar, but I can't find them anywhere to actually purchase. Have they been discontinued?? Does anyone have another recommendation... -
- catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms4how much gluten do I need to eat before blood tests?
I wonder how long it usually takes and if it is dose dependent as well... or if some ppl have a more pronounced reaction to gluten than others thanks again for all the great info -
- suek54 replied to suek54's topic in Dermatitis Herpetiformis7Awaiting dermatitis herpetiformis confirmation following biopsy
Wow KK, thank you so much for all your attached info. I had a very quick scan but will read more in depth later. The one concerning corticosteroid use is very interesting. That would relate to secondary adrenal insufficiency I think , ie AI caused by steroids such as taken long term for eg asthma. I have primary autoimmune AI, my adrenals are atrophied... -
- knitty kitty replied to suek54's topic in Dermatitis Herpetiformis7Awaiting dermatitis herpetiformis confirmation following biopsy
Welcome to the forum, @suek54, I have Dermatitis Herpetiformis, too. I found taking Niacin B3 very helpful in clearing my skin from blisters as well as improving the itchies-without-rash (peripheral neuropathy). Niacin has been used since the 1950's to improve dermatitis herpetiformis. I try to balance my iodine intake (which will cause flairs... -
- suek54 replied to suek54's topic in Dermatitis Herpetiformis7
Awaiting dermatitis herpetiformis confirmation following biopsy
Thank you all for your advice and the dermatitis herpetiformis article. The latter made me realise I had stopped taking my antihistamine, which I will restart today. The Dapsone has cleared the rash entirely but I still get quite a bit itching, absolutely nothing to see though. I know its notoriously hard to clear and its still relatively early days for me...
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Help! My 5 year old daughter just stopped eating dairy and gluten due to her EoE and Celiac. Her favorite candy in the world is tootsie rolls. I did some research, and it sounds like these are the only options for finding something similar, but I can't find them anywhere to actually purchase. Have they been discontinued?? Does anyone have another recommendation for a gluten-free/DF tootsie roll option?
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I wonder how long it usually takes and if it is dose dependent as well... or if some ppl have a more pronounced reaction to gluten than others thanks again for all the great info
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Wow KK, thank you so much for all your attached info. I had a very quick scan but will read more in depth later. The one concerning corticosteroid use is very interesting. That would relate to secondary adrenal insufficiency I think , ie AI caused by steroids such as taken long term for eg asthma. I have primary autoimmune AI, my adrenals are atrophied, no chance if recovery there. But I am in touch with some secondaries, so something to bear in mind. . Niacin B3 Very interesting too. Must have a good read about that. Im sure lots of questions will arise as I progress with dermatitis herpetiformis. In the mean time, thanks for your help.
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By knitty kitty · Posted
Welcome to the forum, @suek54, I have Dermatitis Herpetiformis, too. I found taking Niacin B3 very helpful in clearing my skin from blisters as well as improving the itchies-without-rash (peripheral neuropathy). Niacin has been used since the 1950's to improve dermatitis herpetiformis. I try to balance my iodine intake (which will cause flairs) with Selenium which improves thyroid function. Interesting Reading: Dermatitis herpetiformis effectively treated with heparin, tetracycline and nicotinamide https://pubmed.ncbi.nlm.nih.gov/10844495/ Experience with selenium used to recover adrenocortical function in patients taking glucocorticosteroids long https://pubmed.ncbi.nlm.nih.gov/24437222/ Two Cases of Dermatitis Herpetiformis Successfully Treated with Tetracycline and Niacinamide https://pubmed.ncbi.nlm.nih.gov/30390734/ Steroid-Resistant Rash With Neuropsychiatric Deterioration and Weight Loss: A Modern-Day Case of Pellagra https://pmc.ncbi.nlm.nih.gov/articles/PMC12532421/#:~:text=Figure 2.,(right panel) upper limbs.&text=The distribution of the rash,patient's substantial response to treatment. Nicotinic acid therapy of dermatitis herpetiformis (1950) https://pubmed.ncbi.nlm.nih.gov/15412276/ -
Thank you all for your advice and the dermatitis herpetiformis article. The latter made me realise I had stopped taking my antihistamine, which I will restart today. The Dapsone has cleared the rash entirely but I still get quite a bit itching, absolutely nothing to see though. I know its notoriously hard to clear and its still relatively early days for me. The iodine issue is very interesting. I do eat quite a bit of salt because I have Addison's disease and sodium retention is an issue. I also have autoimmune hypothyroidism, not sure how a low iodine diet would play into that? Because of my Addison's I am totally steroid dependent, I take steroids 4 x daily and cannot mount any defence against inflammation. I need to increase my meds for that. Now that I know what is wrong I can do just that if Im having a bad day. Life is very sweet, just so damn complicated sometimes! Hey ho, onwards. Thank you again for your advice.
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