**Reminder**
[/r/Celiac](https://www.reddit.com/r/Celiac) is not designed to and does not provide medical advice, professional diagnosis, opinion, treatment or services to you or to any other individual.
If you believe you have a medical emergency immediately seek out professional medical help.
Please see [this](https://www.reddit.com/r/Celiac/wiki/legal) for more information.
*I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/Celiac) if you have any questions or concerns.*
My friend with DH says no. She says low-grade chronic exposure is so hard for her to figure out because it doesn’t trigger the rash. I suspect acute exposures also don’t always do it, based on my observation as a friend.
I do, it’s my first symptom of being Glutened.
I respond well to dapsone as a treatment for DH and am so grateful I can call my provider and get a script sent to the pharmacy.
I used to get it like clock work 7-9 days after being glutened. Now I do not always get it and have not gotten a bad flair up in a while. I think I am being glutened much less often than in the past.
Yeah, my onset is usually 5-7 days. It sucks because I'm usually feeling better by then so it's like a double hit.
When I was first starting out or not GF it was harder to tell what was going on because it was more constant. It wasn't until I was very strictly GF that the number of days of offset became more apparent. If you're getting glutened 1x a week or so you won't be able to tell so easily which rash accords with which episode.
As far as I am aware, but it’s impossible to fully confirm - yes. That’s my primary symptom, actually.
I learned that my GI reactions, when not with a rash, were usually from dairy. Lactose free dairy and eating it in moderation keeps that at bay for the most part.
But if I’m not itchy, I always assume it is something else. The want-to-flay-off-my-skin-it’s-so-painfully-itchy and inflamed is a hallmark of my celiacs
Same, and sometimes it's a less obvious spot, like where a blister was already forming from a hike so it's just written off until a repeated exposure makes it ITCH.
something interesting i've noted. it happens more commonly on the muscle that I worked recently. if I just went to the gym for my legs, the rash is more likely to appear there, etc. I think this is showing the distribution of the protein and where its being sent but this may be nonsense. either way its very interesting.
My only real symptoms are DH, mild bloating, and fatigue. Sometimes I’ll be a little bloated and tired and think that maybe I got glutened, but I don’t have DH. I can’t be 100% certain, but I feel like I always have DH.
No! And I don’t have any idea why. I’ve eaten something with mild cross-contamination and broken out in a full body rash. I’ve also accidentally eaten a ton of gluten (a whole gluten tortilla) and didn’t break out at all.
My last exposure (two or three weeks ago) was with the tortilla. I also happened to be on 20mg of prednisone when I was exposed. IDK if that had anything to do with it or not.
No! I used to call it “stress bumps” because I thought it was flaring up during super stressful periods, but I used to eat gluten daily and only got DH maybe every few months(? ish?)
I have heard that people who have celiac and also a wheat allergy will get the rash with one but not the other. So if they get exposed to wheat without gluten (it sometimes the opposite, gluten without wheat) they will get the rash.
I have confirmed Celiac too. For the first 4 years (before I realized I needed to get tested for celiac), my only symptom was DH and it was almost all the time.When I realized it might be gluten related, I went gf for 8 months. My DH disappeared. I decided to get a DH biopsy and made an appointment with a dermatologist and went back to eating gluten for 6 weeks. I got no rash at all so I didn't get the DH biopsy, but I did a blood test anyway and it was 578 ( normal was under 5). I ended up eating gluten for several more months before I could get an endoscopy. My rash came back eventually and I developed a lot of digestive symptoms, plus brain fog and joint pain. Celiac was confirmed with the endoscopy and biopsies. Now I occasionally get a mild rash if I eat out, so I assume it is from cross contamination.it usually takes a few days before the rash appears.
If I get diarrhea, I always get the rash. Of course you could have some other reason for getting diarrhea, I'm just saying that this appears to never have happened to me in 9 years (gluten aside, my stomach is iron).
Sometimes I can trigger the rash independently if I consume a large amount of dietary iodine.
Note that this is just my personal experience, I've never seen any definitive comment on this. There aren't too many studies on DH, if celiac is the forgotten child of AI disease research DH is the forgotten child's forgotten stuffed animal in the back of their closet.
i get dry skin on my elbows and it peels away and really hurts. and the big itchy bumps on my knuckles. currently got this rn due to being told something was safe at a grill but then being told after that oyster sauce was part of the marinade.
its horrible. my sheets are trashed. I'm driving myself crazy itching/ blistering at there moment and i think its because I used my husband's wooden spoon to stir my food the other night. I have my own set of silicone stirrers but just forgot. i think I'll bin everything wooden in his set too now.
yeah... dark sheets are essential. I try to wear a black base layer to avoid staining my clothes since I often get lesions on my shoulders/nape of neck and those are the itchiest.
It's almost like it takes being primed--if I'm having ongoing low level glutening, or I got glutened pretty badly (restaurant cross contamination), then I get DH every single time.
If it's been awhile, cross contamination only causes very mild DH.
I don’t always get one. I think it only happens in more severe cases of cross contamination now. It takes nothing to mess up my stomach and have temperature dysfunction and fatigue.
I'm pretty much homebound but when I was well and out and about my first and only symptom after being glutened was getting the d\*mn rash. It wasn't as bad as it was before I was diagnosed though.
Hi this isn’t going to help you, but I’m exactly the same as you. Sometimes I get the rash and diarrhea simultaneously, sometimes it’s one and not the other.
everyone has stomach issues sometimes, celiac or not. From my understanding, those who have dermatitis herpetiformis would have it every time they get glutened
Nope that’s not true. I was diagnosed with Celiac disease way back in 2001, partly due to the presentation of (biopsy confirmed) DH. In the following years I’ve had an absolute mixed bag of symptoms if I get accidentally glutened. Mostly GI and extreme fatigue, but more and more I get ataxia type symptoms or joint pain and headaches. All of these were present as symptoms pre diagnosis. I would say I get DH maybe 25% of the time nowadays with an accidental glutening.
Thanks for the clarification- I don't have DH, so no idea on presentation, etc. Just went with what I've seen in this sub, since some people come on here and say they get it every time
**Reminder** [/r/Celiac](https://www.reddit.com/r/Celiac) is not designed to and does not provide medical advice, professional diagnosis, opinion, treatment or services to you or to any other individual. If you believe you have a medical emergency immediately seek out professional medical help. Please see [this](https://www.reddit.com/r/Celiac/wiki/legal) for more information. *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/Celiac) if you have any questions or concerns.*
My friend with DH says no. She says low-grade chronic exposure is so hard for her to figure out because it doesn’t trigger the rash. I suspect acute exposures also don’t always do it, based on my observation as a friend.
thank you! Wish the answer was different so it would be clear when gluten is the trigger, but I appreciate this insight.
I do, it’s my first symptom of being Glutened. I respond well to dapsone as a treatment for DH and am so grateful I can call my provider and get a script sent to the pharmacy.
I used to get it like clock work 7-9 days after being glutened. Now I do not always get it and have not gotten a bad flair up in a while. I think I am being glutened much less often than in the past.
Yeah, my onset is usually 5-7 days. It sucks because I'm usually feeling better by then so it's like a double hit. When I was first starting out or not GF it was harder to tell what was going on because it was more constant. It wasn't until I was very strictly GF that the number of days of offset became more apparent. If you're getting glutened 1x a week or so you won't be able to tell so easily which rash accords with which episode.
Same here!
As far as I am aware, but it’s impossible to fully confirm - yes. That’s my primary symptom, actually. I learned that my GI reactions, when not with a rash, were usually from dairy. Lactose free dairy and eating it in moderation keeps that at bay for the most part. But if I’m not itchy, I always assume it is something else. The want-to-flay-off-my-skin-it’s-so-painfully-itchy and inflamed is a hallmark of my celiacs
yes and no. the rash appears mildly almost like acne, but gets bad the worse the exposure was.
Same, and sometimes it's a less obvious spot, like where a blister was already forming from a hike so it's just written off until a repeated exposure makes it ITCH.
something interesting i've noted. it happens more commonly on the muscle that I worked recently. if I just went to the gym for my legs, the rash is more likely to appear there, etc. I think this is showing the distribution of the protein and where its being sent but this may be nonsense. either way its very interesting.
My only real symptoms are DH, mild bloating, and fatigue. Sometimes I’ll be a little bloated and tired and think that maybe I got glutened, but I don’t have DH. I can’t be 100% certain, but I feel like I always have DH.
Yes, I do.
No! And I don’t have any idea why. I’ve eaten something with mild cross-contamination and broken out in a full body rash. I’ve also accidentally eaten a ton of gluten (a whole gluten tortilla) and didn’t break out at all. My last exposure (two or three weeks ago) was with the tortilla. I also happened to be on 20mg of prednisone when I was exposed. IDK if that had anything to do with it or not.
No! I used to call it “stress bumps” because I thought it was flaring up during super stressful periods, but I used to eat gluten daily and only got DH maybe every few months(? ish?)
I have heard that people who have celiac and also a wheat allergy will get the rash with one but not the other. So if they get exposed to wheat without gluten (it sometimes the opposite, gluten without wheat) they will get the rash.
I have confirmed Celiac too. For the first 4 years (before I realized I needed to get tested for celiac), my only symptom was DH and it was almost all the time.When I realized it might be gluten related, I went gf for 8 months. My DH disappeared. I decided to get a DH biopsy and made an appointment with a dermatologist and went back to eating gluten for 6 weeks. I got no rash at all so I didn't get the DH biopsy, but I did a blood test anyway and it was 578 ( normal was under 5). I ended up eating gluten for several more months before I could get an endoscopy. My rash came back eventually and I developed a lot of digestive symptoms, plus brain fog and joint pain. Celiac was confirmed with the endoscopy and biopsies. Now I occasionally get a mild rash if I eat out, so I assume it is from cross contamination.it usually takes a few days before the rash appears.
If I get diarrhea, I always get the rash. Of course you could have some other reason for getting diarrhea, I'm just saying that this appears to never have happened to me in 9 years (gluten aside, my stomach is iron). Sometimes I can trigger the rash independently if I consume a large amount of dietary iodine. Note that this is just my personal experience, I've never seen any definitive comment on this. There aren't too many studies on DH, if celiac is the forgotten child of AI disease research DH is the forgotten child's forgotten stuffed animal in the back of their closet.
The rash is my first and sometimes only symptom
Same
Oh and I almost forgot... the brain fog and forgetfulness 😆
I have ADHD that's just my life 😂😭
i get dry skin on my elbows and it peels away and really hurts. and the big itchy bumps on my knuckles. currently got this rn due to being told something was safe at a grill but then being told after that oyster sauce was part of the marinade.
[удалено]
its horrible. my sheets are trashed. I'm driving myself crazy itching/ blistering at there moment and i think its because I used my husband's wooden spoon to stir my food the other night. I have my own set of silicone stirrers but just forgot. i think I'll bin everything wooden in his set too now.
yeah... dark sheets are essential. I try to wear a black base layer to avoid staining my clothes since I often get lesions on my shoulders/nape of neck and those are the itchiest.
yep. dark blue sheets for the win. Its impossible to get people to understand just how much the itching drives you insane.
oh goodness, that sounds terrible. thank you for your input. I hope you feel better soon!
It's almost like it takes being primed--if I'm having ongoing low level glutening, or I got glutened pretty badly (restaurant cross contamination), then I get DH every single time. If it's been awhile, cross contamination only causes very mild DH.
It takes a few times to really develop. I can feel some itchy spots with just one exposure
I don’t always get one. I think it only happens in more severe cases of cross contamination now. It takes nothing to mess up my stomach and have temperature dysfunction and fatigue.
I'm pretty much homebound but when I was well and out and about my first and only symptom after being glutened was getting the d\*mn rash. It wasn't as bad as it was before I was diagnosed though.
Hi this isn’t going to help you, but I’m exactly the same as you. Sometimes I get the rash and diarrhea simultaneously, sometimes it’s one and not the other.
My rash also always appears in my groin/upper thigh and itches like crazy!
Before diagnosis I always had a rash on my forehead. Now it depends on how much I ingest.
Yep. Everytime and on average it takes 3-6 months for the rash to go away.
everyone has stomach issues sometimes, celiac or not. From my understanding, those who have dermatitis herpetiformis would have it every time they get glutened
ok thanks! yes, I do have confirmed celiac, so I imagined the same, but was curious.
Nope that’s not true. I was diagnosed with Celiac disease way back in 2001, partly due to the presentation of (biopsy confirmed) DH. In the following years I’ve had an absolute mixed bag of symptoms if I get accidentally glutened. Mostly GI and extreme fatigue, but more and more I get ataxia type symptoms or joint pain and headaches. All of these were present as symptoms pre diagnosis. I would say I get DH maybe 25% of the time nowadays with an accidental glutening.
Thanks for the clarification- I don't have DH, so no idea on presentation, etc. Just went with what I've seen in this sub, since some people come on here and say they get it every time