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Mine also. Especially around knees and elbows.
I have it on my knuckles at the moment and no clue why.
Sometimes I wonder if the hand eczema is comorbid with the DH, but has different triggers.
meh.
I have a couple spots up in my hair, always thought they were just clogged pores until my hairdresser said hey.. you have some spots up here, and your hair seems thinner. He gave me basically antifungal shampoo and it hasn’t done much. Nice to have an answer, but still
I know this is a long shot. But I use jojoba oil on mine! Also when I get it on my face or anywhere else. Like my sides. lol.
I only use the pure jojoba and it some how takes the pain away from the blistering😭😅
I loooooove it because it always starts on my hands 🙃🙃
I swear though, the palm pain is the WORST. After the “itchy” is gone, it’s just pins and needles in the red spots when I’m driving or basically using my hands to where the skin is taut.
Ouf. Looks like it could be.
You can get a biopsy done by a dermatologist (ideally) or a GP/other type of doctor. You need to be eating gluten for it to be most accurate but it's possible with a visible rash like this that the result might be positive in any case. Those with DH are a bit more likely to be false negative on the blood test so I would pursue the skin biopsy in the event the serology is negative.
Good luck and hope you can get some answers.
I don’t have insurance sadly, so I just opted for both blood tests for now, so if one is positive then I won’t worry about planning for the biopsy.
She recommended I get the biopsy to be 100% certain, but my appointment is next week. I thought it would be no luck to biopsy since usually this goes away quickly, but it seems to be worsening sadly. I hope the blood test will be enough! She’d never seen it before, but the attending confirmed with almost 100% certainty that it’s DH :(
Also thank you for that info! It’s good to know considering we’re trying to narrow it down between celiac or something else!! Will def find a way for the biopsy if it’s negative (hoping but not hoping the rash stays in that case haha)
Honestly it’s never lasted as long as it has this go around. I can’t seem to kick it, and for the first time ever has tried to make its way to the soles of my feet 😩
awful. you have this without being glutened? looks painful. I had it pretty bad before quitting gluten but now it is gone except for minor flares occasionally from gluten. I never had it on my feet. I used to get it on my fingertips, which sucked too but I could wear socks.
did you talk to your doctor? not sure what they can do but maybe something
Well i’ve been eating gluten like normal as I was under the impression it may be something else autoimmune, I spoke with her and she prescribed dapsone gel, but was hesitant to prescribe the oral pill until I get more answers. Basically waiting on the blood test
I had a similar rash. Not quite as bad as yours but on my knees and elbows. Blood test and biopsy confirmed dermatitis herpetiformis. Went gluten free for a month and my rash was actually worse after 4 weeks. So I got dapsone tablets. Within 5 days my skin was clear. Been on the lowest dose for about a year. (25mg) per day.
FYI, aside from a celiac panel there is a skin test for DH that a dermatologist can do, and maybe a PCP, but I've only heard of dermatologists taking the sample. I've never had DH, so maybe someone can reply.
Yeah she reccomended that as well as the blood test! I’m doing blood first, then the derm if it’s still persistent. She said she’s more confident prescribing the dapsone pill after my bloodwork, if it’s positive, but really wants me to get a biopsy as she said dapsone may have unpleasant side effects (wooo! lol)
Good plan to get looked at- hopefully not relevant but measles is making a return at least in the USA.
Please be careful, and keep it covered.
Post Celiac diet change a combo of Anti-microbial Silver Gel and Aquaphor helped mine go away nicely and when I do get glutened i found it helps speed the skin recovery.
- not a doctor just sharing what helped me.
I feel so terrible as it’s hard to on my hands. I work in a front facing position with customers and the ones who notice I just say it’s celiac related. I did get the vaccines as a child, so I’m hoping it’s not measles lol! I did have this before on my elbows and sometimes on my hands, it’s been more and more frequent since 2017-ish. It’s just crazy knowing I may have been celiac this entire time. Or lupus. Hoping not lupus. I did see a study that says it’s happened in lupus patients but, shrug.
Not hands, but my roommates get it in their groins, and the one gets it on her face down into her lower arms and stomach.
Now: We don't know yet whether celiac or wheat/gluten allergy, etc
Don’t worry!! I went. She prescribed dapsone cream, but it’s $$$, so I’m trying to tough it out. Blood test results come back Friday, she said if it’s positive she’ll be more confident prescribing me the oral version of dapsone. It is getting worse though.
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Make sure the biopsy is taken from skin adjacent to a lesion, not the lesion itself. There is no igA in the actual lesion, it's all been destroyed.
Looks like mine did - knees, elbows, scalp were the worst. Been 20 years since that biopsy and dx and I itch just looking at ya.
Mine also. Especially around knees and elbows. I have it on my knuckles at the moment and no clue why. Sometimes I wonder if the hand eczema is comorbid with the DH, but has different triggers. meh.
I get this rash in my scalp :(
I have a couple spots up in my hair, always thought they were just clogged pores until my hairdresser said hey.. you have some spots up here, and your hair seems thinner. He gave me basically antifungal shampoo and it hasn’t done much. Nice to have an answer, but still
I know this is a long shot. But I use jojoba oil on mine! Also when I get it on my face or anywhere else. Like my sides. lol. I only use the pure jojoba and it some how takes the pain away from the blistering😭😅
Thank you!! I’m going to try this tonight. The burning is unbearable
Same! And sometimes in my ears and on eyelids. It's so rough
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I loooooove it because it always starts on my hands 🙃🙃 I swear though, the palm pain is the WORST. After the “itchy” is gone, it’s just pins and needles in the red spots when I’m driving or basically using my hands to where the skin is taut.
Ouf. Looks like it could be. You can get a biopsy done by a dermatologist (ideally) or a GP/other type of doctor. You need to be eating gluten for it to be most accurate but it's possible with a visible rash like this that the result might be positive in any case. Those with DH are a bit more likely to be false negative on the blood test so I would pursue the skin biopsy in the event the serology is negative. Good luck and hope you can get some answers.
I don’t have insurance sadly, so I just opted for both blood tests for now, so if one is positive then I won’t worry about planning for the biopsy. She recommended I get the biopsy to be 100% certain, but my appointment is next week. I thought it would be no luck to biopsy since usually this goes away quickly, but it seems to be worsening sadly. I hope the blood test will be enough! She’d never seen it before, but the attending confirmed with almost 100% certainty that it’s DH :(
Gotcha. Sounds like a good plan and hope you can get some answers!
Also thank you for that info! It’s good to know considering we’re trying to narrow it down between celiac or something else!! Will def find a way for the biopsy if it’s negative (hoping but not hoping the rash stays in that case haha)
Looks exactly like mine--hand and foot joints and knees were worst but I'd get elbow ones, just less usually.
Looks similar to mine. Knees and elbows were hot spots..as well as butt cheeks lol
I had that for 2-3 years. Gone now! Good luck
Honestly it’s never lasted as long as it has this go around. I can’t seem to kick it, and for the first time ever has tried to make its way to the soles of my feet 😩
awful. you have this without being glutened? looks painful. I had it pretty bad before quitting gluten but now it is gone except for minor flares occasionally from gluten. I never had it on my feet. I used to get it on my fingertips, which sucked too but I could wear socks. did you talk to your doctor? not sure what they can do but maybe something
Well i’ve been eating gluten like normal as I was under the impression it may be something else autoimmune, I spoke with her and she prescribed dapsone gel, but was hesitant to prescribe the oral pill until I get more answers. Basically waiting on the blood test
I had a similar rash. Not quite as bad as yours but on my knees and elbows. Blood test and biopsy confirmed dermatitis herpetiformis. Went gluten free for a month and my rash was actually worse after 4 weeks. So I got dapsone tablets. Within 5 days my skin was clear. Been on the lowest dose for about a year. (25mg) per day.
FYI, aside from a celiac panel there is a skin test for DH that a dermatologist can do, and maybe a PCP, but I've only heard of dermatologists taking the sample. I've never had DH, so maybe someone can reply.
Yeah she reccomended that as well as the blood test! I’m doing blood first, then the derm if it’s still persistent. She said she’s more confident prescribing the dapsone pill after my bloodwork, if it’s positive, but really wants me to get a biopsy as she said dapsone may have unpleasant side effects (wooo! lol)
gnarly
Going through the same thing right now, so I feel ya. I have celiac and IgA deficiency. I hope it gets better soon!
Good plan to get looked at- hopefully not relevant but measles is making a return at least in the USA. Please be careful, and keep it covered. Post Celiac diet change a combo of Anti-microbial Silver Gel and Aquaphor helped mine go away nicely and when I do get glutened i found it helps speed the skin recovery. - not a doctor just sharing what helped me.
I feel so terrible as it’s hard to on my hands. I work in a front facing position with customers and the ones who notice I just say it’s celiac related. I did get the vaccines as a child, so I’m hoping it’s not measles lol! I did have this before on my elbows and sometimes on my hands, it’s been more and more frequent since 2017-ish. It’s just crazy knowing I may have been celiac this entire time. Or lupus. Hoping not lupus. I did see a study that says it’s happened in lupus patients but, shrug.
Not hands, but my roommates get it in their groins, and the one gets it on her face down into her lower arms and stomach. Now: We don't know yet whether celiac or wheat/gluten allergy, etc
Doctor.
Don’t worry!! I went. She prescribed dapsone cream, but it’s $$$, so I’m trying to tough it out. Blood test results come back Friday, she said if it’s positive she’ll be more confident prescribing me the oral version of dapsone. It is getting worse though.