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- knitty kitty replied to Morgan Tiernan's topic in Dermatitis Herpetiformis6
How to navigate living with dermatitis herpetiformis
Welcome, @Morgan Tiernan, The best thing to clear my dermatitis herpetiformis is to take Niacin, Vitamin B 3, the form called nicotine acid, the kind that causes flushing of the skin. Flushing Niacin clears my skin quickly. Yes, the flushing might seem really strange, but it opens the tiny capillaries in the surface of the skin which helps remove...- coeliac
- dermatitis herpetiformis
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- Morgan Tiernan replied to Morgan Tiernan's topic in Dermatitis Herpetiformis6How to navigate living with dermatitis herpetiformis
Hey @Rogol72! thanks for your very helpful response. Those videos are great and super educating! I’ve forwarded them to my family members too as often it can be very difficult to explain to those around you just what you’re going through. Though, I’m fortunate that they’re super supportive and keen to help me get to the bottom of the problem. I...- coeliac
- dermatitis herpetiformis
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- Morgan Tiernan replied to Morgan Tiernan's topic in Dermatitis Herpetiformis6
How to navigate living with dermatitis herpetiformis
Hi Trents, thank you so much for your help and support. Yes it’s not ideal from my surgery practice. This is just one of the many problems I have experienced with them, we’ve had to pay to go to a private consultant now instead (I’m from South Wales in the UK, spot on about the spelling of “coeliac”! I completely forgot there was another way of sp...- coeliac
- dermatitis herpetiformis
- (and 1 more)
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- Lynnard replied to Lynnard's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms5Waiting on biopsy results but wanted opinion on bloodwork
Thank you - that makes perfect sense and I understand. celiac disease is an autoimmune disease which will cause further damage while gluten sensitivity is different. Based on my symptoms and bloodwork, I am almost certain I have celiac disease. I kind of hate to hope for a positive biopsy but a negative one would be frustrating for sure. Regardless, I have...
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By knitty kitty · Posted
Welcome, @Morgan Tiernan, The best thing to clear my dermatitis herpetiformis is to take Niacin, Vitamin B 3, the form called nicotine acid, the kind that causes flushing of the skin. Flushing Niacin clears my skin quickly. Yes, the flushing might seem really strange, but it opens the tiny capillaries in the surface of the skin which helps remove the antibodies that gather in those pustules. The flushing lessens the longer Niacin is taken, but still works at keeping the blisters away. Be sure to take a B Complex and Benfotiamine, a form of Thiamin , Vitamin B 1. Covid, shingles and other infections like strep throat deplete our Thiamine quickly. Having frequent infections can indicate low Thiamine. We have a higher metabolic demand during infections, physical trauma or surgery, emotional and mental stress, and while physically active like dancing. Thiamine has anti-virus and antibacterial properties. The eight essential B vitamins work together. Taking Benfotiamine in addition to the B Complex is safe and nontoxic. Excess B vitamins are easily excreted because they are water soluble. New Celiacs are often low in vitamins and minerals due to malabsorption. Vitamin D can help calm the immune system. Following a low histamine Paleo diet , like the Autoimmune Protocol Diet by Dr. Sara Ballantyne, a Celiac herself, is also very helpful. Steroids lower histamine, but the low histamine AIP diet is safer. This research may be old, but Flushing Niacin does work!!! Nicotinic acid therapy of dermatitis herpetiformis https://pubmed.ncbi.nlm.nih.gov/15412276/ P.S. Wearing natural fibers helps my dermatitis herpetiformis. Synthetic fibers keep sweat next to the skin, causing further irritation. Natural fibers wick moisture away, keeping skin dry and exfoliated. -
By Morgan Tiernan · Posted
Hey @Rogol72! thanks for your very helpful response. Those videos are great and super educating! I’ve forwarded them to my family members too as often it can be very difficult to explain to those around you just what you’re going through. Though, I’m fortunate that they’re super supportive and keen to help me get to the bottom of the problem. Interesting how you mentioned soaps and shower gels irritating too! Is it better to rinse off the sweat straight after exercising just with some cool water? Additionally, is minimising soap in those areas during showering helpful too? Or is there a particular soap that may be helpful! I have some more questions about dapsone too, if you don’t mind me asking. As mentioned in my response to Trents, I take prednisolone for when I am glutened or when my symptoms become too unbearable. With oral steroids it’s usually a 4 week dose as I have to reduce my dose to slowly come off them. How long can you take dapsone for? Can it impact your immune system in the same way as oral steroids (I have to be super careful I don’t pick up any infections whilst on my steroids as my immune system is compromised.) Yes, I’m from South Wales in the UK. Though my grandfather is Irish, explaining my surname (very well spotted!) -
By Morgan Tiernan · Posted
Hi Trents, thank you so much for your help and support. Yes it’s not ideal from my surgery practice. This is just one of the many problems I have experienced with them, we’ve had to pay to go to a private consultant now instead (I’m from South Wales in the UK, spot on about the spelling of “coeliac”! I completely forgot there was another way of spelling it around the world!) The dermatologist I have been seeing over the last few months has been amazing. And thank goodness for places like google and forums like these, I don’t think I would’ve ever thought it could be gluten! Interesting about the iodine. I’ll definitely start to limit this out of my diet. It makes sense as the places of irritation are places I sweat or pressure points (wrists, waist etc.) Dapsone was mentioned in my last appointment also. He’s reluctant to put me on it just yet, probably just until this biopsy is done so we can confirm for definite. At the moment I’m being put on prednisolone (oral steroids) every time I either become glutened or my symptoms reach an ultimate. I think he’s said if I need to be in them for any more than 3 times a year, dapsone will be more considered. I’m keen to go on it as every time I come off the prednisolone I can see the blisters creeping back. I’ve got loads that have burst on my hairline. I also start to get flaky/peeling skin as well which I’m not sure is related? As well as limiting iodine, is there anything else that might help irritation with sweat? Is it better to wear more loose fitted clothing? Can I apply something to stop the irritation of sweat whilst i’m exercising? Thanks for all your help so far! I will keep you all updated on my journey! -
Thank you - that makes perfect sense and I understand. celiac disease is an autoimmune disease which will cause further damage while gluten sensitivity is different. Based on my symptoms and bloodwork, I am almost certain I have celiac disease. I kind of hate to hope for a positive biopsy but a negative one would be frustrating for sure. Regardless, I have done a lot of research on gluten-free diet and am prepared to begin a new lifestyle journey - with a lot of questions along the way. I appreciate your information and advice!
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