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Newbie To celiac disease And Possibly Dh

Katie618

By Katie618
in Dermatitis Herpetiformis

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Katie618 Apprentice
Katie618
Posted

i was diagnosed with celiac disease in may and now going through testing to see if i have DH. my skin biopsies came back negative- but my dermatologist still thinks i have it, went to yale and am now on a month trial of dapsone. the side effects and risks are pretty scary-- is it worth it? are the results worth the risk? i'm on a 50mg dose, which isn't too bad, but i'm wondering about other's experiences...

another thing on my mind... how to deal with outbreaks any remedies to put on the blisters/rash to calm it down or feel better?! i also hate when ppl ask me what is on my legs/feet/hands.. i also have excema so i just tell ppl it's that, but their comments make me feel like i'm not normal and sometimes effects my self esteem; any advice on how to deal with that?!

i'm new on this so i've got a lot of questions, and i still haven't figured out the posting thing yet... thanks!!

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sharikay Rookie
sharikay
Posted
i was diagnosed with celiac disease in may and now going through testing to see if i have DH. my skin biopsies came back negative- but my dermatologist still thinks i have it, went to yale and am now on a month trial of dapsone. the side effects and risks are pretty scary-- is it worth it? are the results worth the risk? i'm on a 50mg dose, which isn't too bad, but i'm wondering about other's experiences...

another thing on my mind... how to deal with outbreaks any remedies to put on the blisters/rash to calm it down or feel better?! i also hate when ppl ask me what is on my legs/feet/hands.. i also have excema so i just tell ppl it's that, but their comments make me feel like i'm not normal and sometimes effects my self esteem; any advice on how to deal with that?!

i'm new on this so i've got a lot of questions, and i still haven't figured out the posting thing yet... thanks!!

Hi Katie, I have dh and the doctor gave me samples of Sarna lotion to try and it is available over the counter. It helps some but is not long lasting. When it comes to the dh itch, it's hard to get it to go away for long periods of time during breakout periods. Dapsone is risky, but keep yourself monitored with bloodwork while on it. I have gotten down to 50 mg. once a week. It might be easier to tell people you are gluten-intolerant and if they ask what that is, just tell them it's a protein found in wheat, rye and barley. I was diagnosed in March and have learned alot by trial and error. There is alot of misinformation out there so be careful. Best wished with your new lifestyle. ;)

evie Rookie
evie
Posted
Hi Katie, I have dh and the doctor gave me samples of Sarna lotion to try and it is available over the counter. It helps some but is not long lasting. When it comes to the dh itch, it's hard to get it to go away for long periods of time during breakout periods. Dapsone is risky, but keep yourself monitored with bloodwork while on it. I have gotten down to 50 mg. once a week. It might be easier to tell people you are gluten-intolerant and if they ask what that is, just tell them it's a protein found in wheat, rye and barley. I was diagnosed in March and have learned alot by trial and error. There is alot of misinformation out there so be careful. Best wished with your new lifestyle. ;)

Katie; I am taking Dapsone too @12.5 mg per day, was on 25mg for several years. Had sore buccosa of the mouth and was diagnosed 'citricidal pemphigoid' of the mouth several years before celiac dx. Apparently this was a warning of celiac at that time but no one put the 2 problems together. Dermatologist told me I might be better if I got my food allergies under contol so I finally had more testing, so it finally came to the point that celiac was found. I thought some break outs might be DH but had tests and were not. My problems run more to belly cramps & D, not sure which is worse..had excema on legs 2 winters ago. I do not feel the amounts you are taking are anything to be too concerned about. My dermatologist has me get blood test every 6 months. Have a good life in spite of your problems Katie and sharikay.!! :):) evie

Hi Katie, I have dh and the doctor gave me samples of Sarna lotion to try and it is available over the counter. It helps some but is not long lasting. When it comes to the dh itch, it's hard to get it to go away for long periods of time during breakout periods. Dapsone is risky, but keep yourself monitored with bloodwork while on it. I have gotten down to 50 mg. once a week. It might be easier to tell people you are gluten-intolerant and if they ask what that is, just tell them it's a protein found in wheat, rye and barley. I was diagnosed in March and have learned alot by trial and error. There is alot of misinformation out there so be careful. Best wished with your new lifestyle. ;)

Katie; I am taking Dapsone too @12.5 mg per day, was on 25mg for several years. Had sore buccosa of the mouth and was diagnosed 'citricidal pemphigoid' of the mouth several years before celiac dx. Apparently this was a warning of celiac at that time but no one put the 2 problems together. Dermatologist told me I might be better if I got my food allergies under contol so I finally had more testing, so it finally came to the point that celiac was found. I thought some break outs might be DH but had tests and were not. My problems run more to belly cramps & D, not sure which is worse..had excema on legs 2 winters ago. I do not feel the amounts you are taking are anything to be too concerned about. My dermatologist has me get blood test every 6 months. Have a good life in spite of your problems Katie and sharikay.!! :):) evie

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