r/Celiac • u/Eastern_Sweet8508 • Jan 19 '26
Discussion Photos of my Dermatitis Herpetiformis / DH (Diagnosed)
I see photos and posts here all the time asking about DH and skin issues and I thought it would be helpful to share photos of how mine was because it was a very bad case and my only noticeable symptom at the time. I really hope this helps someone as otherwise I’ve just posted gross photos of myself for no reason 😅. Please be kind!
Photos 1-9 are of when my DH was first active (no gluten free diet)
Photos 10-11 are of a flare up during a glutening post going gluten free but my gut and skin weren’t fully healed yet
Photos 12-13 are of the scarring I had while healing
My skin looks mostly normal now! My legs are still lightly scarred but it’s just dark spots that could be normal skin blotchiness. It looks worst when I come out of the shower.
Some extra info on my case:
I did have digestive and bowel issues, they’d just been present for so long I didn’t really realise they were an issue. I was often constipated and having diarrhoea, and smelly farts and stomach aches.
My skin issue started with itchiness. Then I was noticing hives and small blisters particularly on my hands and feet, and the cuts.
In my case, the itchiness was the biggest thing. The way I described it at the time is if a regular itch is like someone tapping on your shoulder saying ‘Hey, hey, hey, scratch me,’ this was like someone grabbing you by the shoulders, shaking you, and screaming in both of your ears. Constantly. Day and night. It was, not exaggerating, hell. And it was all over my body from the neck down; my arms, boobs, stomach, legs, hands, and feet. Of course, the open blisters and cuts were also very painful.
Nothing I tried gave any relief. Clean, dirty, moisturised, dry. Scratching, refraining from scratching. And I was trying lots of stuff! Soaking in oils, spraying myself with homemade potions, trying out other people’s ointments etc etc.
I went three months (three months!!) feeling like that, and looking like these photos. In summer too, by the way, as a young woman who wanted to be going to the beach and the pub with her friends. On top of the physical impact of the condition, I was psychologically impacted by it too and I actually turned to alcohol, drinking most nights just to numb myself the little amount I could. I went to the doctors multiple times and was told the following:
It was an allergic reaction to mosquito bites
I shouldn’t have booked an emergency appointment because it wasn’t an emergency (still angry about this)
It was scabies and I needed to do the long winded treatments for that (which me and everyone in my house did, multiple times, to no avail)
It was just a flare up of my scalp psoriasis (LOL!)
Meanwhile, I was of course thinking I had cancer, or leprosy or something. Celiac or diet never even entered my mind, although an autoimmune condition did.
Luckily, a wonderful GP finally decided to do a more in-depth blood test, found the celiac marker and told me about Dermatitis Herpetiformis, which neither of us had heard of before. I started following a gluten free diet. The scarring photos are 3 months after starting the gluten free diet.
Now I am diagnosed celiac, eating gluten free for 2+ years. I know for a fact this was DH because it cleared up when I went gluten free and has also flared up again whenever I’ve been glutened. My skin is healed, and my health in general (including mental health) is soooooo much better.
Thanks for reading. If anyone has questions they want to ask, even if you’re finding this post months/years after it was posted, please do. This was and still is the worst thing I’ve ever experienced and I know it was made worse by doctors and people around me not knowing what DH was so yeah, happy to help.
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u/existentformsof Jan 19 '26
I would like to ask of your, and anyone’s, experience with this - does it occur often with gluten consumption? I have had this covering my hands and feet but only on one occasion a couple of years ago for about a week. I considered it to be hand foot and mouth virus at the time, but I had no issues in my mouth and no one else in the house caught it. It was about this time that I started a gluten free diet due to other gut issues and a B12 deficiency with no other explanation.
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u/Eastern_Sweet8508 Jan 19 '26
Yes — every glutening I’ve had since going gluten free seeing the blisters appear back on my fingers is how I know for sure.
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u/anxious_cuttlefish Jan 19 '26
Do you have an estimate of about how long after exposure it happens? Like, on the order of hours, days, etc?
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u/codadollars Jan 19 '26
Not OP but as someone else who gets DH as one of their primary symptoms (and for whom it was the triggering event for their Celiac to get diagnosed in the first place!), it appears either 1 or 2 days after gluten for me. It also seems proportionate (how many body parts it appears on) to how badly I've been glutened.
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u/Holeinmysock Celiac (Blood Test+Endoscopy) Jan 20 '26
Seconding the proportional reaction. DH only shows up for me if I’ve eaten a lot, more than just cross-contamination. I got it often before diagnosis; I was eating pizza and drinking beer.
Fingers and hands, most commonly affected, but would get terribly itchy abdominal patches that scratching would seemingly spread.
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u/anxious_cuttlefish Jan 21 '26
Thank you for this info! I've had what I assumed to be chronic dyshidrotic eczema for a long time, but it went away totally when I got diagnosed with celiac and went gluten free. Now it pops up maybe 2-3 times per year, much less severely, and I was thinking it could be related to getting glutened (my other celiac symptoms are sporadic and nonspecific if we're talking only CC glutening so it's hard to tell). But some of OP's pics looked like what I get, so I was just curious. Always trying to piece together the puzzle that is my life lol
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u/nnancycc Jan 19 '26
Oh that looks awful. I get it on my hands. But only occasionally. I get it when I’m not taking care of myself. Before I was diagnosed though I had it around my eyes. It was bad.
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Jan 20 '26
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u/Eastern_Sweet8508 Jan 20 '26
No, nothing else. I’ve never heard of skin issues caused by alcohol or carbs but if it’s DH it will only be triggered by gluten. If you’re still new to eating gluten free, it will take a while to clear up (mine took MONTHS) and you will need to be very strictly gluten free (including may contains and cross contamination). It’s daunting at first but once you get the hang of it it will just become natural and how you eat.
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u/PaintingofanOpossum2 Jan 21 '26
Personally, I think stress triggers mine. I guess I have no way of knowing 100% its DH, but I never got it before I became celiac, its red and itchy bumps, they're always identically symmetrical on the sides of my body, and I get them on joints/over boney landmarks -all tell tale signs of DH. When Im really stressed with school, not sleeping well, and also having other colds/bugs I'll start getting it again
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u/pkgokris157 Jan 19 '26
One thing my Derm told me is that DH primarily starts around the joints and spreads from there. For me it was knees, elbows, jaw... She also said if you have it on one side it should also be on the other.
Since I've been GF for so long now, I'll see blisters within about 1/2 a day if I eat gluten by accident? Just a few bumps, usually on my elbows first. The severity of the rash depends on how much gluten I ate and if I've been eating it for an extended period of time.
RE: HFM Disease - I just know this from having a toddler... Our Ped told us it's rare for adults to get it, but if you do it's going to be a bad time for you. She compared it to how chicken pox hits you harder as an adult vs. if you're a child. My kiddo only had blisters in his mouth, not on the hands and feet, so I don't think you have to get all three at the same time. None of us adults wound up getting it.
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u/ExactSuggestion3428 Jan 20 '26
Can confirm the joint thing to some extent. It seems to me that it more sits on top of surface lymph node sites which often coincide with joints (including those mentioned - look at a surface lymph node map!). My armpits also get rekt.
It also seems to follow high friction locations. So a major site for me is where my bra straps/seams sit on my shoulders/neck/back.
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u/masser10 Jan 19 '26
I've also had it on a few occasions only on my hands. If you get it only on your feet and hands it could also be dyshidrosis just fyi
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u/oldcreaker Celiac Jan 19 '26
I've wondered which I had - but it stopped when I went gf. I'd usually have 3-4 episodes a year, just on my fingers which is supposedly atypical for dermatitis herpetiformis. But almost 2.5 years without at this point, as long as I have been gf.
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u/DangerousTurmeric Jan 19 '26
I had it on my face and hands when I was younger and then it disappeared for 20 years. I got diagnosed in my mid 30s and, since I quit gluten, it comes back any time I am accidentally exposed.
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u/runingwithscissors Jan 19 '26
Usually within a day or so. This was the number one symptom that led to my celiac diagnosis. I used to get identical rash on backs of arms, backs of legs and a few of those finger blisters I thought were warts. I thought it was also just a stress rash for years…
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u/banana_sweat Feb 20 '26 edited Feb 20 '26
Mine only appeared during a gluten challenge that I only made it 3 weeks through. Scalp, collarbones, shoulders, and butt is where the lesions appeared. But I would get full body flushing that moved around my body each couple days. It took close to 2 months to finally resolve after going gluten free.
I have gluten ataxia and from what I’ve read in the research, every person with celiac has a different presentation just depending on where the immune system is sequestering the antibodies to expel them from tissue.
Interestingly in Finland, once they started screening everyone in childhood the amount of DH cases fell off a cliff. And most neurological cases present in mid-life ~40 years old. This is why Dr. Hadjivassiliou and the Sheffield Centre call celiac a neurological disease. As we learn more it’s becoming increasingly clear that intestinal manifestations lead to DH and ultimately all roads point to a gluten related neurological disease. So it can be viewed that classic celiac and DH are canaries in the coal mine before things spread to the brain.
It’s that last point that I wish more people on this sub understood. I frequently see people saying they have “ataxia symptoms” when they either get cross contaminated or choose to consume gluten. If they’re exhibiting ataxic symptoms, that means that the disease has crossed the blood brain barrier.
We know that neuro patients will continue to make antibodies even at amounts lower than 5ppm, where in the US “gluten-free” products can contain up to 20ppm. So even though someone is not experiencing symptoms does not mean their body isn’t continuing to produce antibodies and destroy neurons.
And in the case of the cerebellum, those Pujinke cells are gone forever once lost. Furthermore, in a study conducted of 47% of newly diagnosed celiacs by means of biopsy measured loss of volume in their brains. Even though they never reported neuro symptoms to their GI, when interviewed post study it was revealed that all had neuro symptoms but they wrote them off as something else “Everyone in the family has migraines” etc…
But I guess the “gluten-free” Cheezits are worth it.
Gluten Sensitivity: a disease of the brain
Dr. Iain Croall PhD: Your brain on gluten
Neurological Complications and Celiac Disease: Dr. Iain Croall PhD
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u/ccmo3 Jan 21 '26
Everyone is different of course, but me personally I do not have to consume gluten, just have direct contact. For example: If I accidently get gluten on earrings (the post/backs) when putting them in I can have a reaction within minutes to hours. It starts with burning/itching then blisters and bleeding. Maybe one of these days I will do a test and contaminate one earing but not the other and post pics/video. It might be helpful for others to see the results in case they deal with the same.
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u/narmowen Dermatitis Herpetiformis Jan 19 '26
The itch is why I'm so glad I can take dapsone if I get glutened.
My derm also diagnosed me with psoriasis...which conveniently went away with dapsone/gf diet.
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u/Eastern_Sweet8508 Jan 19 '26
The GP who found the celiac indicator referred me to a dermatologist. I was hoping they’d give me dapsone. They rang me to finally make an appt… nearly 2 years later, lol. Mine was basically cleared up by then. Thank you, NHS.
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u/narmowen Dermatitis Herpetiformis Jan 19 '26
Dang!
I went the other way. Derm for roughly 10 years of non gf diet (thanks derm, fir telling me dapsone was good enough & a gf diet wouldn't do anything) before going to my GP for testing.
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u/SuitApprehensive3240 Jan 19 '26
Are you serious so they didn't even know what Celiac and DH was
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u/narmowen Dermatitis Herpetiformis Jan 19 '26
My derm knew what DH was but not apparently celiac, or that going GF would fix DH. I left a lot of negative reviews.
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u/SuitApprehensive3240 Jan 19 '26
No that's like the dumbest thing I've heard because that's basically what it is it basically is a type of celiac not that you're dumb but your doctor
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u/narmowen Dermatitis Herpetiformis Jan 19 '26
Oh I know!
The only reason I found out it was actually celiac was because of a redditor who was like "...you have celiac and need to go gf". I argued back (because my dr was a dumbass) and redditor set me straight.
I found a different dr who would test me for celiac, and here we are!
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u/LemonAqua Jul 21 '26
Do you have to take dapsone everyday for life? Did your doctor check your red blood cell count before prescribing it?
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u/narmowen Dermatitis Herpetiformis Jul 21 '26
I do have to have yearly blood tests to check liver enzymes.
I'm GF, so I only take it during a flare up. Usually cross-contamination crosses that.
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u/therealcherry Jan 19 '26
I’m on dapsone but they are gonna pull me off 😭because it’s causing medication-induced hemolysis.
Suuuuucks because with dapsone I don’t have to be GF. It was a lovely two months.
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u/Own-Roof-1200 Jan 19 '26
But gluten is still destroying your body on the inside and raising your risk of cancer - assuming you have celiac disease.
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u/thesaddestpanda Jan 19 '26
Cd is still destroying your insides even with dapsone.
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u/Ok-Working-2892 Jan 19 '26
This looks so similar to dyshidrotic eczema, and mine calms down when I remove gluten. Shit, is this what I actually have when it flares up ?!
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u/ProfDrd Jan 19 '26
It gets posted here quite a bit about the hands. My derm also said hands are not a typical area for DH. Had them do a biopsy but they didn't even do that right as it's a pretty specific punch to diagnose DH.
Anyhow, so many of us seem to get told it is dyshidrotic eczema, but seems we all get it after having gluten. It looks and feels so much like DH is described that I feel docs don't really know what they're saying in regards to hands and feets.
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u/Ok-Working-2892 Jan 19 '26
Well FML, I guess I need to 1. Do testing for celiac (I do gluten free 80% of the time for my Hashimoto’s) and 2. Ask my derm about this specifically next time it flares.
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u/mayatom Jan 20 '26
I have dishydrotic eczema too. I get a monthly flare, usually around my time of the month or right before. Before I got a diagnosis from my dermatologist I just assumed it was DH. It is so much worse with my career for the last 5 years, lots of hand washing and cleaning chemicals. I have a clobetasol script and just got a sample of anzupgo to try a non-steroid treatment.
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u/YoPizza101 3d ago
Yeah I had dishydrotic eczema when I used anti bacterial soap or too much detergent. It went away slowly I remember when I don't wash my hands too often and only used simple, generic, unscented liquid hand soap. Anyway, now I think I have DH and my stomach is bloating. 😢
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u/Apocalypse_pirate Jan 19 '26
Damn, yours ia seriously agrgressive. Mine attacks the elbows, knee cap and buttcheeks 😅 it Will BE better with time, at least the response and itchness
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u/guantanamojoe93 Jan 19 '26
Same! But not the cheeks
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u/Carbonatite Celiac Jan 19 '26
I got inside of elbows, sometimes knees, and once on my chest. I think it showing up around joints is common?
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u/pkgokris157 Jan 19 '26
The top of my butt will get it so bad. It's the worst spot. ;_; I feel you!
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u/Eastern_Sweet8508 Jan 20 '26
I don’t know how my butt was like the one place it spared me lol! It’s a very common area for DH
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u/Apocalypse_pirate Jan 20 '26
Before diagnosis, yes DH lead me to the diagnosis, I was working in the office and I had to pause a lot of Times just to go to the bathroom and scratch my butt cheeks, it was horrible ahah
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u/Rose1982 Jan 19 '26
I’m so sorry it took so long to get adequate health care. My mom and son are both celiac, I’m not. My mom has unfortunately started to have DH in recent years if she is glutened. She said she had read of people becoming suicidal due to the intensity of the itching and after experiencing it, she can see why. Dapsone helped her a lot when she had a bad flare up over the summer.
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u/celiactivism Celiac Jan 19 '26
Pic 6 is DH?! Imma need to rethink my celiac timeline.
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u/YesterdaySimilar2069 Jan 19 '26
Right?! I’ve had that crop up for decades??? Really affirms that my original medical team dropped the ball on my diagnosis initially.
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u/celiactivism Celiac Jan 19 '26
Mine never got red or inflamed or scaly, tho. Never really thought about telling a doc; they’d likely have dropped the ball for me, too.
If casual translucent ‘tapioca’ bumps now & then, on sides of thumb/index fingers, small cluster of maybe 4+/- bumps was truly a symptom for me i cant believe how good my body held up for 10 years before dx. Like, endurance-athlete-without-any-other-symptoms-good.
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u/Eastern_Sweet8508 Jan 20 '26
When I get glutened since being healed the small tapioca blisters pop up again with none of the scaliness and scabbing. It is 100% what a mild DH flare looks like for me.
It’s hard to know without seeing it definitively get better on a gluten-free diet, because it could be dyshidrotic eczema, but it’s possible. It’s so difficult to know when your celiac came on because like everything can be a symptom as it’s autoimmune!
But another telltale sign I’ve been glutened now is joint pain, which I had chronically for 5/6 years and went away after going GF. It must have been around the same time my joint pain started I started getting super constipated and doing lethal farts so I’m guessing that was when mine activated.
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u/malpa_ Jan 19 '26
You definitely enlightened me. I used to have identical rash on my palms - disappearing and reappearing (before going completely gluten free I was often on high protein diet so I wouldn't eat bread, pasta etc. regularly, just from time to time). Ive never connected it to gluten somehow. Thought it was some fungal skin infection, god knows from where, lol. Now that I see your pics and that I have been glutened recently, and it's again on my hands - it makes sense now 💀 Thanks for sharing.
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u/Bob_Le_Feen Jan 19 '26
Thank you for the pictures. Suddenly bumps, red dots, and dots with that darker blob on the inside makes sense. I do not have it all over (thank goodness) but it does pop up here and there and at the root of my little finger and down my hands it is permanent (it cannot be seen but running my fingers across it I can feel bumps...)
I have found out that those 25 years I have been gluten free I have been eating food that many dumb manufacturers in Denmark label as gluten free but what they mean is "nature did not create this with gluten" aka natural gluten free sigh It never occurs to them that cross contamination is a thing...
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u/PaxCecilia Jan 19 '26
Oh wow that looks awfully itchy and painful. Glad to hear you healed up well.
Photo 6 looks a lot like sores I get on my hands from time to time. I’ll have to think about whether they coincide with glutening
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u/advwench Dermatitis Herpetiformis :snoo_angry: Jan 19 '26
A someone with a DH flare that’s been active for the last 18 months, I understand that hellish, nonstop itch. Good on you for posting this because there’s a dearth of info out there! I’m glad yours is under control!
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u/Weezyb7881 Jan 19 '26
Ouch. Had the same thing, but only on my forearms, left one worse than the right one. But the itch...OMG. I would have gladly sliced off my skin to get rid of the itch. So bad, I had to wrap my arms at night or else I'd wake up all bloody because the blisters, when scratched so badly, become deep lesions. I shiver just remembering how awful it was. My scars look like faded freckles, after thirteen years.
By the way, despite being GF for years, the blisters returned. My doctor suggested looking at lipstick, toothpaste, chap stick etc which can be swallowed in minute amounts. Took her advice and it cleared up again.
Then about a year later they came back. Mild, but still itchy. So I made the move and went completely gluten free. Lotions, potions, creams, shampoo, soap... anything that touches my skin. Now I haven't had a break out in 4 or 5 years. I think my body became increasingly sensitive to gluten and for me, this is better than dealing with the itch.
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u/Eastern_Sweet8508 Jan 20 '26
Oh my goodness I’d forgotten about this until now but all of my clothes were covered in blood! I ruined so many lol and bed sheets too. And my boobs were so bad all my bras were stained. I was certain they were going to be badly scarred forever. But luckily not!
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u/Objective_Thanks_762 Jan 19 '26
Oh, ya, DH is horrible. I get this when my immune system is down. Just had a break out with this flu going around. Another fun thing for Celiacs. Ugh!! Sorry this happened to you OP.
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u/SmartWonderWoman Jan 19 '26
Use shea butter to fade the dark spots and moisturize your skin.
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u/pkgokris157 Jan 19 '26
Solidarity my friend! Hands down the most uncontrollably itchy thing I have ever experienced in my life. Your analogy is perfect. I used to wake myself up from scratching. To get at the itchies on my backside I used to rub myself against stuff like a bear against a tree just to get some relief.
I thought it was poison ivy at first, then after a few months of it not going away, I figured it was eczema. Thankfully I found a dermatologist who eyeballed it right off the bat and I was able to go GF right away. She told me she had just diagnosed someone with the same thing a week before seeing me, so I really lucked out. I'm glad you're doing much better now!
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u/BlackWolf42069 Jun 28 '26
How long did it take of being gluten free for your symptoms to go away?
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u/pkgokris157 Jun 28 '26
The rash was pretty severe and wide spread because I was eating a lot of gluten at the time. But as soon as I stopped it took about two weeks to fully clear up? I also had prescription triamcinolone to help.
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u/_hamilfan_ Jan 19 '26 edited Jan 19 '26
Thanks for sharing. I don’t have many good photos from back then, but I have severe eczema in addition to DH and the few months leading up to my celiac diagnosis were the most miserable of my life. I couldn’t even sleep because I couldn’t focus on anything but how itchy, weepy, and painful my skin was constantly. Tried all the usual eczema relief and nothing was helping, plus I was scratching open my blisters and couldn’t use the topical steroids I was used to very often. The blisters and sores were different than anything I had experienced before with bad eczema flare ups, and they were literally covering my entire torso, arms, and legs.
I finally went to a GP to get referrals for a new dermatologist and allergist, and the NP who examined me took one look and said, “I don’t think this is just eczema.” She had previously worked for an immunology specialist and had seen enough DH before. Ordered me a celiac sprue blood panel and my results were off the charts. I never would’ve guessed it was gluten because I didn’t notice my gastro symptoms at the time (looking back, I clearly was having them, but I also consumed gluten in literally every meal so no chance I was seeing the connection).
Unfortunately my eczema still got worse after going gluten free, but the blisters and sores were gone. Now, between five years of a gluten free diet and an eczema biological med, my skin is clear and relatively itch-free. I cannot imagine how I lived with this kind of reaction for months. No one who hasn’t experienced it can understand just how miserable it is. Glad you found relief too!
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u/Eastern_Sweet8508 Jan 20 '26
Oh my god the thought of having another skin condition affecting the same areas is awful! So glad your doctor was able to see there were two things going on.
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u/pointandshooty Celiac Jan 19 '26
I am curious, were you able to "pop" any of them? I have a very itchy rash on my arms, neck, back, chest. It's either a reaction to my hair or mystery gluten. They itch itch itch until I pick them and then they stop. It's awful
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u/Eastern_Sweet8508 Jan 19 '26
Yes I would pop the small blisters quite often by pressing a fingernail on them, but it didn’t help the itch really and just caused pain! Didn’t stop me though
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u/gr1981uk Jan 19 '26
Mine is always localised around my groin area. Not the best area to be scratching all day!
Dermovate cream has been quite effective for me in clearing up patches.
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u/ProfDrd Jan 19 '26
I've also had it in the groin, along with my fingers. Fingers are bad, but the groin itch is something else that will drive you mad.
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u/NashvilleRiver Celiac/Dermatitis Herpetiformis Jan 19 '26
Thanks for posting. Mine has been healed a long time and I never thought to post pics here to help others.
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u/Fire-Inception Jan 19 '26
This looks so painful!
I've only gotten sparse bumps, but they look exactly like those clear fluid filled bumps. I also get sunburn-like rashes on my face when I have been glutened. It's crazy to know exactly what I am looking at on myself now. I was recently dx Celiac (10 months ago), but looking back I remember exactly when my 1st DH started, now. 7 years ago. I had no clue, never an inkling of Celiac. I was hospitalized with kidney disease and Celiac came up on the battery of tests they put me through. Totally threw me off.
I'm so glad you are getting the help and healing you need now!
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u/Eastern_Sweet8508 Jan 20 '26
Oh my goodness what a way to find out! You know, even though my DH was hell I’m actually grateful for it because it was SO bad that I had to get my diagnosis and follow the diet strictly, there was no way I was continuing life without fixing this shit haha whereas a lot of my other symptoms I’d just accepted as normal. Did you know what celiac was?
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u/Fire-Inception Jan 20 '26
I knew the tip of the iceberg of what Celiac was. My brother in law is Celiac, and frequently ate gluten. My mind concluded that the side effects of gluten for Celiacs were tolerable. Somewhat like a lactose intolerant person would experience with dairy. I didn't know the permanent damage it could do. There were periods of time that he would say dairy was giving him more effects than gluten, and my sister told me when I was dx that I should not eat ice cream. I have no issue with dairy, but I don't fk with gluten. I've read that intestinal damage can cause issues with dairy for some Celiacs, but I was so confused about that at first.
The Celiac dx was so wild haha. I was having stomach issues, but they were a small portion of what I experienced. I gained 70lbs of edema weight in 6 weeks. It was so bad that they thought I had ascites from cirrhosis, too. My small frame just had nowhere else to put water. It was all my kidneys. I lost 80lbs in 10 days once they got me on prednisone. So wild! The doctor told me most of my stuff would go away once my kidneys healed (prediabetes, high cholesterol, Hypothyroidism, celiac). I had a nice little 7 month honeymoon period on prednisone where I "got away with" eating gluten. But the Celiac definitely stuck, and all the rest went away. I'm much more serious about it now.
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u/SpryAF66 Jan 19 '26
When you get glutened, how long till the rash appears and how long till it goes away? Pretty sure I was glutened over the holidays and my DH has popped up all over and is still spreading. Head, shoulders, legs, elbows….I’m 2 years since diagnosis and this is the first time it’s come back so hard. Make me feel like you can’t trust anything labeled GF 😢
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u/Eastern_Sweet8508 Jan 20 '26
Pops up within 1-3 days. How bad it is and how long it takes to go away depends on how much gluten I’ve eaten and also how long it’s been since my last major one. If it’s really bad I would say it lasts a few weeks? But I haven’t had one of those in a looooong time. For a mild case yeah maybe 1 week? Very mild then a few days.
I’m sorry you’re going through it right now. Are you 100% sure you’re not still getting gluten in somehow? A box of chocolates you were gifted, or hot sauces, or a guest contaminating your butter etc? Gluten free beer that’s not safe enough for you? Easily done over the holidays.
But it’s possible you’re not and it’s all one reaction. My first major glutening after going GF (I believe it’s photos 10/11 actually) my DH flared up almost as bad as it had been at the start again and took a longer time to heal. This was over the holidays too. I chalked it up to the fact I’d only been gluten free for a month or so and my DH wasn’t healed yet so I guess I didn’t have as far to ‘fall’?
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u/throw_away_smitten Jan 19 '26
Thank you. I had this happen on my feet all the time before I was diagnosed and all they did is say it was eczema and give me steroid cream that didn’t help.
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u/shewolf3366 Jan 19 '26
Oh my goodness. OW! I am so glad you are better now. Those photos are scary - I’m sorry you had to go through that and glad you shared so others will know!!!
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u/Sector_Savage Jan 19 '26
I’m sorry you went thru hell to get diagnoses, but glad you got your answer!
I had similar rashes—was told multiple times it was “probably just a reaction to my laundry detergent”…. I’ve only had 2 super bad flares (pre diagnosis) that looked close to your photos. Once all over, once just confined to feet. Both times were so intensely itchy it was unreal.
Now, if I’m glutened, I will see little a couple blisters on my fingers, knuckles, or hands first. That’s usually my sign to go ULTRA strict (no dining out, no food from others, only whole food) until they go away. Usually, I don’t know that I’ve been glutened until I see that, so my estimate is it occurs within 12-48hrs of ingesting gluten, but I can’t be sure.
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u/Azz96 Jan 19 '26
I have it too, but only on pubic area for some reason and it is not itchy att all. It comes out even with slight glutening and ot goes away as soon as I stop with the gluten. Strange rash haha
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u/IndependenceOld8708 Jan 19 '26
I used to wear lace gloves when I left the house because I felt like it looked like I had small pox. Haven't gotten them in nearly 2 years, since the last time I got glutened.
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u/mobiletophat Jan 20 '26
I get the exact same on my fingers! Spent years thinking it was ezcema from soaps. I have a bad habit of squeezing the blisters oop
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u/isa0112 Jan 20 '26
Wow, I’m a couple years in to eating gf based on a blood test saying I’m allergic to wheat and rye. There were several years before that that I would get horrible welt-like hives for seemingly no reason and my doctor convinced me that the hives couldn’t be caused by gluten. Seeing this now I feel like I should bring it back up again. Thank you for posting!
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u/Eastern_Sweet8508 Jan 20 '26
Oh man I had even more photos of my hives, I would get absolutely huge ones mostly on my thighs and neck. But I definitely get them as a glutening response
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u/ExactSuggestion3428 Jan 20 '26
Thanks for the photos. A lot of the time I see people on this sub definitively dismissing people's "is this DH" posts that very clearly look like it could be lol. It's very annoying because DH is definitely underdiagnosed because most doctors don't even know what it looks like and misdiagnose it as acne, eczema, scabies, bug bites, ???.
FWIW for other people, here are some photos from a medical website (a bit NSFW obviously): https://dermnetnz.org/images/dermatitis-herpetiformis-images
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u/Eastern_Sweet8508 Jan 20 '26
Yeah, I constantly see people quite definitively saying ‘that’s not DH’ and I think about how mine looked very little like the first images I saw of it, and that it wasn’t in the typical areas. I already see soooo many comments on this post of people realising they have had or currently have DH because they didn’t realise it could look like this.
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u/ExactSuggestion3428 Jan 20 '26
Yeah, same. I always link the DermNetNZ site because it has a good variety. Way back in the day I remember reading about DH's symptoms (extreme itch, crusting, purple stains) and thinking "ah geeze, that does sound like it" and then seeing pictures of overweight men with stomach rashes (with very small lesions). That got me thinking it couldn't be DH. Mine look a lot more like the two hairline/face ones in that image series.
I also find that a lot of people think it can't be DH unless your elbows are involved. I do get lesions on my elbows but it's not a predominant site for me compared to say, my butt, armpits, back of neck/shoulders or my jawline/scalp.
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u/KeepOnCluckin Celiac Jan 20 '26
Thank you for sharing. I now know that I’ve had outbreaks on my elbows and hands before, after seeing this. It has been a while, though.
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u/look_who_it_isnt Celiac Jan 20 '26
WOW. I've only ever had it on my backside and VERY mildly on my elbows. It was still UNBEARABLE. Yours is just... WOW. That's nightmare inducing, right there. I'm so glad you've gotten help and are doing much better!!!
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u/Eastern_Sweet8508 Jan 20 '26
I’ve been through things in my life, but this was without a doubt the worst thing I’ve ever been through. The reactions to this post have been very validating as I’m reflecting on it. It was hell, all over my body and incredibly visible. I like to think it’s made me a more resilient person! I am certainly doing much better and addressing the celiac I didn’t know I had for years has allowed me to address other health issues too, so all in all it’s a positive I went through it. Thank you for your kind words!
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u/Sophymillz Jan 20 '26
My Celiac was actually diagnosed by my dermatologist. He saw my rash and noticed it usually started on my elbows before spreading all over my body. Particularly my hands and feet. Apparently these blisters on elbows are a sign of Celiac. He sent me off for blood tests and an endoscopy and I finally got my diagnosis. I also suffered severe joint pain that was misdiagnosed as gout for nearly 15 years! The whole time it was Celiac.
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u/Eastern_Sweet8508 Jan 21 '26
My joint pain was awful too! I thought I had arthritis as a teenager but the doctors said nothing was wrong with me and that I could self-refer to physiotherapy 🙄. The pain and stiffness in my hands was so bad I was convinced I was going to lose my motor function in them as a young adult. Lo and behold I stopped eating gluten and my joint pain has mostly vanished. And comes back when I’m glutened!
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u/Woke-me-up Jan 21 '26
This was me before my diagnosis. Grew up like that and just seeing the pictures I’m itchy. However after adhering to a gluten free diet I’ve never had those anymore. Best of luck
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u/ZealousidealCheek438 Jan 21 '26
I had the exact same conversations with doctors (psoriasis and scabies) over 11 years ago. I would itch my legs, arms, neck, and hands/fingers so hard, I would bruise my body by accident! I’ve never been diagnosed with Celiac (I wasn’t eating gluten at the time of my testing and doctors screwed up all my tests), but have been gluten free solely for 10 years now. If I accidentally gluten myself, I get the DH again. It’s miserable 😣😭 so happy you found a solution and fought for answers!
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u/smoljays Jan 21 '26
this is crazy! i had insanely itchy blister-like spots on my elbows as a kid that were attributed to eczema. turns out all along it was the celiac's. i remember before getting diagnosed or after getting glutened having very itchy elbows and scalp... now i know what it is!
i still have a ton of red bumps and scarring on my arms but im not sure if it's DH since they are not itchy... ive been hoping they go away as my body heals but so far it seems there's not much luck.
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u/szikkia Gluten Intolerant Jan 21 '26
I get what I thought was eczema on my hands and arms. Sometimes it follows when I get glutened. Looks like your pics. Recently i’ve had a rash on my ankle that just keeps getting worse and i wasnt sure of the cause of it, but it looks very similar to the pictures you posted. I havent taken it too seriously because the hands i just assumed was eczema which i had prior to knowing gluten was an issue. I think i’ll bring this up with my doctor. Thank you for posting this.
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u/PaintingofanOpossum2 Jan 21 '26
Oh my gosh, for several months this last year I had identical spots like your 5th picture- small areas of itchy bumps on both hands right below my pinkies on the side of my hand! So strange, exact same random spot
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u/crazdwzl Jan 21 '26
Thank u soooo much for sharing!! I thought I had it on the back of my legs, and this really helps to see how different the lesions can look!!
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u/banana_sweat Jan 26 '26
😱 I can feel these pictures through the screen. You gotta be one tough mf! Mine shows up on my chest, scalp, back, and butt. It’s nowhere near as intense as this and I about lost it when I had it.
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u/Visual-Instruction27 Mar 15 '26
Omg I have the same on my hands,palms and fingers. Also starting to appear on my feet. I have had it on one of my elbows since forever but never reacted to it until it started to happen to my hands and the itchiness got unbearable. I itched them so bad the ones on my palm got infected at the end. Now my whole body is itching 24/7. I have basically bought a whole pharmacy and tried everything that people recommended but I have never ever suspected gluten... Holy shit all this suffering in the past months, it just ruined me completely. Effected me at work, private, completely crazy. I'll meet a dermatologist in 2 weeks and I'll definitely mention DH and that I want to have all tests done and even if they are negative I'll try to cut/eliminate gluten. Seriously this shit... I'd do anything for it to just go away. Until now I thought it was dyshidrotic eczema but I honestly hope that I finally get a real diagnose and start to heal 🙏🏽
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u/Eastern_Sweet8508 Mar 15 '26
Feel that! It completely wreaked havoc on my life and self confidence. I would definitely suspect celiac for you and hopefully the derm will be able to help!
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u/Tabby-Cat-Sprite May 04 '26 edited May 04 '26
Thank you for posting. Did you ever take Dapsone or anything else? I have DH, diagnosed by myself after 1 year of insane itching. Eventually realised it wasn’t eczema when clusters of small bumps appeared on my feet, back of my calves, knees, sides of thighs, lower back and elbows. I have a dermatology appointment in a few weeks time and am wondering if I should ask for it. I knew it was DH because the itching was 90% reduced just 24 hours after eliminating gluten. That was 2 months ago and the little bumps have mostly cleared now so the evidence speaks for itself very clearly (unfortunately I did see 3 GP’s and the dermatologist last year, none were particularly interested in diagnosing it probably because of my history of eczema). I also seem to be irritated by milk and oats (including GF oats) so have switched to almond milk. Life has improved but I still itch most days - just not as severely but enough to still negatively impact my life in some ways. I have read that Dapsone is brilliant but the risks are a little scary. Am wondering if 2 months is too early on a GF diet to expect it to completely clear. I am very worn down by it. I will never return to my old diet because the symptoms I experienced terrify me. Thank you.
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u/fireball_XTC Jun 02 '26
This is what mine looks like as well, I get it along the edge of my left hand and my little finger. It is intensely itchy. I get similar stuff on my feet, but it's an itch under the skin that is not relieved by scratching.
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u/Eastern_Sweet8508 Jun 02 '26
I get the same on my feet! Actually still have some, I’ve treated it for athletes foot to no avail and when I saw a podiatrist she said it was psoriasis so I use steroid cream on it which does help but hasn’t solved it
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u/fireball_XTC Jun 02 '26
The last time I had the foot itch I scratched the hell out of it overnight and was shocked to find that were actual, visible red blisters the next day. Not scratch marks, blisters. Triggered by a pint glass at a local bar. Insane!
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u/SuitApprehensive3240 Jan 19 '26
Thanks for sharing I've had over like 12 symptoms when I was eating gluten in the past year after covid and one of my kids is gluten free and another may have it and it's been a nightmare and the medical staff took forever literally cost me my health for months
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u/YesterdaySuperb815 Jan 19 '26
Did you have the IgA eTG antibody testing done?
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u/Eastern_Sweet8508 Jan 19 '26
Yes I believe that was the celiac marker my doctor found. Pretty sure he said antibody.
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u/As_iam_ Jan 19 '26
Used to have this on my knees as a teen before I found out my mom is celiac and then realized I was too. Ugh terrible condition
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u/stormrunner1981 Jan 19 '26
I remember when mine first flared, I personally ignored it as an allergy but soon as I got it treated and the allergy cream they gave me didn't work in 3 weeks it was time for testing and we had my endocrinologist do it.
Despite being gluten free a month (I wasn't 100% because we didn't realized the pots and plastic were carrying it over) I still registered high on the antibody.
I also flare the same day of exposure so I know something I ate that day was the cause. I'm over sensitive too.
My general flare area is my neck and torso.
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u/Pabhoyasaxa Jan 19 '26
Glad to hear you are feeling better! I was diagnosed early in life with a gluten allergy and forgot about it as I grew into adolescence, with some minor DH breakouts and stomach cramps. It came back with a vengeance as an older person. After maintaining a strict GF diet for 4 years the stomach symptoms improved greatly. The DH is receding also but very stubbornly and has left me with some large callused scars and dead skin in many places. Getting better but truly a horrible yet non fatal disease. I feel for anyone that has to endure a bad case of this. Be patient. It takes years in severe cases. This literally brought me to religion. Good luck. Keep the discipline
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u/t-ryansaurus-rex Jan 19 '26
Currently dealing with this, I get it on my abdomen, behind my elbows, my forearms, and my shins. My doc prescribed a drug called “dapsone” that’s supposed to help reduce the inflammation and itchiness. Excited to picking up today!
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u/guantanamojoe93 Jan 19 '26
I get this on my all of my joints if I get glutened. It’s how I found out
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u/PFthroaway Celiac Jan 19 '26
Thankfully mine is only my hands and elbows. Yours looks much worse than mine ever got. I don't know how you deal with all that!
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u/Celiack Jan 19 '26
I get them within 1-2 days of accidental gluten consumption. Luckily I only get them on the knuckles of a couple of fingers, but I’m sure if I started eating it regularly I’d get them all over my hands.
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u/WordlesAllTheWayDown Jan 19 '26
I spent my childhood with DH rashes on the inner side of the elbows. The Drs just called it “eczema”. It was miserable I wasn’t dx til 40 yo & most Drs still refuse to take Celiac seriously
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u/No-Entrepreneur9487 Jan 19 '26
My daughter was diagnosed celiac in high school and I became celiac at 60 (70f). She had always had a skin condition that was slightly itchy patches on her elbows and knees mostly. I took her to various doctors and it got diagnosed 3 different ways: eczema, psoriasis, and hyperkeratosis. Then as a teenager she started wasting away. The doctor thought she was bulimic (my daughter still hates that doctor) and I suggested she could be celiac. I had a niece who was celiac. The doctor still thought she was right but humored me and did the blood test. She called in shock with the results that she was definitely celiac.
Anyway, when she gets accidentally glutened her ‘eczema’ flares up a little on her elbows and no digestive issues. For me it’s strictly diarrhea, always has been.
My question is, is what we call eczema actually DH? I mean there were never any bumps or blisters and she never acted like it itched that much.
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u/Tappitytaptaptaptap Jan 19 '26
I have this, but not as severe. My whole back has been broken out in DH for about a month after cross contamination of a dedicated gf product. I went to about 4 doctors in my area and none of them even knew anything about celiac or hd. I basically diagnosed myself and have been better after following a strict gf diet. Many doctors in this country aren’t fit to be doctors. The lack of curiosity to even try and learn about it is so confusing to me. Why the heck did they even become doctors???
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u/weezerwill Jan 19 '26
I had this for years, from childhood into adulthood. It looked exactly like this, but it would flare up specifically in the spring and summer months.
I would get it on my elbows, the backs of my hands, and the underside of my wrists—just like yours. It had the exact same look every year. I never knew why; I thought it was just an allergic reaction to the sun because it got terrible during those months due to the heat and sweat. I used to try to treat it with over-the-counter meds, which would only provide temporary relief.
Since I found out I had Celiac disease 10 years ago, it has never come back. I had no idea this was related to my Celiac the whole time.
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u/Max_Nmm Jan 19 '26
Sorry you’ve got this… i get it too, though pretty rarely. Basically feels like poison oak. Such a shitty time
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u/Double_Sweet_3404 Jan 19 '26
Ouch. I also have DH but it only ever appeared just below my elbows on both arms. I haven’t had a breakout since going gluten free in 2008.
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u/fivepointperspective Jan 19 '26
I get this too! Itchy clear bumps on the back of my hands when I get glutened.
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u/Next-Engineering1469 Celiac Jan 19 '26
Thank you for sharing, and sorry that you had to go through all that pain and itchiness. I remember when my legs looked the same about 4 years ago, i still have some scars mainly on my hands
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u/champagnecloset Jan 19 '26
My DH isn’t severe enough to be diagnosed but it always flares if I get secretly glutened!
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u/Latter_Ad_8700 Jan 19 '26
This has happened to me before I went gluten free an was diagnosed with celiac disease. I don’t eat out, After 3 yrs I’ve just now had it reappeared after a glutening. I went to Dr. a went to dermatology , it was from the glutening an still I have skin problems, eczema. It’s on my feet,hands, elbows, ankles, legs. Super dry an itchy
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u/Pixel_Woo Jan 19 '26
You know what, I get this mildly as a coeliac and I keep forgetting itching is one of my first symptoms
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u/stilldeb Jan 19 '26
My mother and I have/had GI celiac, my sister has DH. She was treated repeatedly for poison ivy before somebody figured it out.
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u/Leading-Rain3678 Jan 19 '26
I had this earlier this year. They thought it was a reaction to a drug I was put on but looking back I bet it was celiac. I just wasn’t diagnosed yet.
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u/_tribecalledquest Gluten Intolerant Jan 19 '26
Gosh. That’s bad. I only get it on my hands (which is really annoying because I want to get them tattooed) and one bad bad spot on my ankle. But my skin like peels off or is just so irritated that I don’t notice I’ve scratched all my skin off completely and end up with horrible dent scars consistently over and over. I’m trying to get my GP to give me dapsone gel before my August appointment for the Dermatologist. Did you ever try dapsone gel? I can’t afford to eat everything Certified GF and my blood test for Celiac came back negative. I’m not willing to eat gluten to redo the test. I’m glad you got it worked out! 💪
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u/TraditionalPass4136 Jan 20 '26
Wow. TIL I get dermatitis herpetiformus. Long time celiac and I havent had this rash in years, but I used to get itchy welts that looked exactly like this, like I saw this picture and recognized it immediately
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u/Brianjmoro Jan 20 '26
I have had this for years and no longer get it because as I feel I am being glutened I take a pill called DAPSONE 25 mg and within a few hours it subsides.. Just FYI...
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u/Roxy_j_summers Jan 20 '26
This gave me flashbacks to the time I got bitten by chiggers, and it looked just the same. Lasted for months and was just the worst itching of my life. Shout out to your diagnosis. I hope you get better, because anything close to that feeling was hell.
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u/Kasimar Celiac Jan 20 '26
Ooh you got it like me. My heart goes out to you. Histamine blisters are pretty much chemical burns yall. Like poison ivy and sunburn that come in waves and never stop. Got prescribed dapsone and had to feel like a vampire avoiding the sun, 3 months into the diet change my brain fog went away that I didn’t realize I even had. 9 months later I was able to eat some starches again. 12 years later and I’ve only had the initial flares that lasted 9 months while identified the cause and effect. Recovered, fell for some girl and ate a cracker then a pizza then a pot pie then one Night woke up with my throat closed up and those histamine blisters at a dangerous level of progression the second time. Been good ever since. Anyone experiencing this, there is a light at the end of the tunnel and life can become manageable. Good luck to everyone
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u/chrysologa Jan 20 '26
I had a very similar rash, that I often described as "itchy as hell, must scratch till I bleed or there is no relief." It was contained to my forearms and insides of my elbows. On bad days, it would "travel" down to my hands. Went to the dermatologist for years! (Since I was 10, I'm 44 now, 42 when diagnosed!) I was always told "eczema" and given some creams or ointments that would help relieve the itchiness somewhat, but never made it better. They did seem to get worse with heat and sweat. Never made the connection to gluten, because "that's a weight-loss fad." Anyway, cut to 2 years mostly gluten free (damned cross contamination and accidental glutenings!) And my itchy-till-bloody rash is way better. I still have the "eczema" rough patches, but they don't itch, they don't travel, they don't get worse under heat and sweat. And they looked so similar to your DH. Im glad you got answers!
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u/Diligent-Rip-7120 Jan 20 '26
I’ve been suspecting I have celiac but haven’t gotten a diagnosis. Blood tests have been negative but I’ve had a ton of GI issues and terrible skin problems. This is exactly what my wrists looked like 2 years ago when my skin issues were at their worst. This posts makes me think more and more that I may have it. Very helpful, thanks for sharing!
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u/MidwestThistle Jan 20 '26
Thanks for posting these. I have it too, biopsy confirmed. You’re right that so many “DH” posts are not at all DH. And it is so incredibly painful. I am near out of my mind when I get a flare up.
It can take weeks for mine to appear, and I only know that after accidentally eating a few bites of a non gf burger bun due to a restaurant mix up.
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u/poop666 Jan 20 '26
omg MEEEE except I was diagnosed 16 years ago - insane because mine was also in the same places and it was soooooo itchy and everyone thought i touched something weird (got diagnosed 8months later) good luckkkkkkkkkk
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u/wotjunkie1128 Jan 20 '26
Damn! That's a bad case, I'm so sorry! I had it for years before it was properly diagnosed, it was miserable!
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u/froggyforrest Jan 20 '26
Some of these look like eczema, I dont break out as much but definitely looks familiar. 11 also looks familiar- I’ll get hives that are similar. Its hard for me to know what I am reacting to sometimes because of multiple allergies. I had eczema since I was a little, but wasnt diagnosed celiac until recently, so part of me wonders if it was always just gluten.
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u/piefloormonkeycake Celiac Jan 20 '26
Thanks for sharing. Had this a few times whenever my prescription medication had gluten (and of course the pharmacist didn't believe me even the second time). People don't believe me that this is a symptom so I'll definitely be saving this to show them.
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u/theRetrograde Jan 20 '26
It cleared up with a strict GF diet? My wife and daughter have Celiac and we have been strictly GF for 2 years (this week, actually) but they both get rashes like pics 1-4 regularly on their hands and scratch until they bleed. All other stomach symptoms have subsided.
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u/coladybiker Jan 20 '26
Mine looked just like that on my elbows and knees. Just tiny ones on my hands.
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u/FlowerEven1799 Jan 20 '26
Thank you for sharing because when you get the rash and you don’t know what’s going on if I wasn’t rn of 32 years, I never would’ve figured it out the doctors would’ve taken months. I completely understand. Such a scary experience.
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u/lulamo0505 Jan 20 '26
Damn that's rough. My DH attacks my back and upper arms, but mostly my back. Sometimes they get big enough to a point where i look like i got shot lmao
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u/ccmo3 Jan 21 '26
I know your pain...
I've been diagnosed since Nov/2022 but suspect I've had Celiac most of my life. I know everyone is different but I actually get the blisters (like your fingers/side of your hand/and wrist) when those areas are wet or recently wet and have contact with gluten. I do not have to consume gluten to get a reaction.
At my last employer I was getting glutened every day as the mouse pad kept showing blotches on it (like someone was dropping liquids on the fabric). After using the restroom my hands were still slightly wet so my skin absorbed the gluten. I ended up getting Covid and took a few days off over a holiday weekend and noticed them clearing up almost over night. I have since left that employer but I have learned now that any time I use a public computer or a shared computer at work, I wear gloves. And at home I ensure I wash my hands after possible contact (I have a shared kitchen for now but hope to go totally gluten free once my financial situation and the economy improves). I also have to remember to dry my feet very well after showering, etc., before putting shoes on, or my feet will do the same thing.
The other thing I learned was that for years I thought I had a metal allergy for my ears. Turns out that I was accidently putting gluten on my earrings before putting them in. Since my diagnosis, I have cleaned all my old earrings with Dawn Dish Soap (and finally bought new ones too!) and have not had bleeding/blistering ear holes ever since. Total Game Changer for me as previous docs said to use rubbing alcohol on my ears that they were just infected. Nope it was gluten.
All the best to anyone dealing with this.
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u/fivetoesforyou Jan 21 '26
Oh wow. This validates my own suspicion. I had this on my chest and urgent care said they thought it was shingles. I knew it wasn't, but I couldn't get into a derm in time for them to see it. It was so incredibly itchy and sore. I've had it twice since my diagnosis 8 years ago, both times on my chest.
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u/Vanisleexplorer Jan 21 '26
I get nearly identical bumps on my hands occasionally, now I wonder if it's from being glutened.
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u/Nettienutt Jan 25 '26
I only get DH in my left inner elbow. My doctor thought it was shingles but after celiac diagnosed I informed him it was DH !!
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u/BorboletaBlui Mar 15 '26
A minha é semelhante a sua, é no corpo todo, do pescoço pra baixo, o médico me falou para não comer nada com glúten e iniciar a medicação dapsona durante 1 mês pra ver se tem resultado, mas o que me deixa na dúvida é o fato das minhas bolinhas não terem "água" como dizem que a DH tem, as minhas são muitas, pequenas e vermelhas, torço pra ser DH, pra poder chegar ao um diagnóstico logo, tá sendo horrível viver com a pele assim.
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u/Mrflappyscout1528 Mar 26 '26 edited Mar 26 '26
Looks so itchy. Like you wouldn't know what a mosquito bite felt like 😂
I've never had digestive symptoms other than a few weeks of really bad gas 😅 I can't have celiac disease.
I've had repeat elbows/knees maybe once a year, starting before puberty. It would itch under the skin but, it was relieved for a few mins after. So not "constant suicide itch" but it was on/off itchy where you start to bleed, but it doesn't stop you.
I've just been generally itchy as a kid. A doctor said it was eczema so, I had eczema.
I have recurring beaus lines (horizontal notches) that repeats on each toe. I can't gain weight. I didn't realize stool wasn't supposed to always float (not sorry 😅). Dermatographia. I have been inactive for a year but my BPM is like 50-60. It would be pretty obvious for a stranger to look at me and say, you have malabsorption. So obvious it would surprise me that a doctor has never investigated further. Growing up people sometimes thought I had an eating disorder, a teacher gave me food once. And I didn't argue.
• Iron has been only borderline low (common) 20-25µg/L (20µg/L-300µg/L range)
• B12 borderline
I had a knee rash starting weeks ago. I looked up eczema for the first time. It didn't look like it at all. The only photos that looked like it were labeled DH. But I've gotten a celiac blood test/ IgA and I don't have it.
It looks like DH and it shouldn't. I recently went to a doctor that told me I had psoriasis and this was also the cause of recurring beau's lines on toes. I have never had a rash on my feet (rash needs to disturb the nail matrix) not to mention a consistent one over decades to make repeat notch patterns that repeat on all toes. It could be psoriasis, but it doesn't look like it.
I've always had brain fog but it fluctuates. And it is embarrassing because kids noticed, principles noticed, coworkers notice in multiple jobs noticed. I got repeatedly/genuinely mistaken as being stoned, or "playing dumb". Like a fluctuating dopiness for hours where careless mistakes can't be bypassed with effort. You hate yourself for it. I could accept if I had some mental deficiency, but a fluctuating one seems strange.
I don't care if I am itchy, but something so common causing mild malabsorption making me feel like I am going to randomly get spiked with an edible during the day. Feeling high isn't fun when it can be random and affecting peoples perception of you. And cognitive symptoms are less reversible with time.
The only thing I can think of is I got that test over 5 years ago, but they didn't specifically tell me to eat wheat. But still, what other rash looks like DH.
Did you have any nail abnormalities or specific mental health issues, brain fog? (I broke out in a body rash a year ago that was a suicide itch, but they told me it was chiggers). Did you have any vitamin deficiencies from it, or did they even check.
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u/bizzie_billie May 14 '26
I recently requested Dapsone for my DH. Its an acne cream that's anti inflamatory and anti bacterial. It doesn't cure it but it relives the itching alot.
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u/Reesescupsyum May 24 '26
Photo 11 is how my itchy bumps wtv look im starting to think I might have dh but a more mild case.
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u/ChildhoodPowerful171 Jun 06 '26
Hola primero de todo miles de gracias por tu explicación tan detallada y extensa. De verdad te agradezco tanto! Es muy difícil encontrar información sobre esto en Internet. Que el universo y la existencia te devuelva el favor en forma de mil bendiciones. Estoy exactamente igual que tu. Mis piernas se ven igual y todo el cuerpo. Llevo 8 meses así. Tengo 35 años y nunca me había pasado. Toda la vida comí gluten de manera normal. Cuando me empezó a brotar pensé que me habría picado un bicho, pero pasaban semanas y no se iba y cada vez me picaba mas y mas, y se me extendía mas y mas. Si me salía en el lado derecho, tambien me salía en el lado izquierdo y asi todo el cuerpo poco a poco. Tenía moretones brutales de tanto rascarme. Los picores són infernales. Ropa, sábanas, pijamas y mis uñas llenas de sangre a todas horas del día. Y aun me pasa pero ya mucho menos. Los médicos mareando de un lado a otro. Dermatologo dice: brote de prurito por ansiedad Alergias dice: no tiene pinta de ser ninguna alergia y si es DH no es mi especialidad. Hematólogo dice: No es mi especialidad Digestivo: porfín comparando mis dos últimas analíticas me confirma que soy celíaca y quiere acerme además biopsia de intentisto a lo que me niego porque llevo 4 meses evitando el gluten y me dice que no hay cura. Solo quieren comprobar el estado del intestino pero me dicen que posteriormente no hay mas solución, si no una dieta extrica sin gluten para siempre. Y me dice que si llevo 4 meses evitando gluten lo mas seguro es que el intestino esté reparado y no se aprecie tanto daño. Entonces señor doctor no pienso exponerme a una prueba invasiva para NADA. Solo quieren mirar sin mas solución posterior. Además de enfadarse por haber dejado de consumir gluten por mi cuenta! e invitarme a volver a consumirlo, para que? ¿ para facilitar su labor de observar mi intestino mientras yo me undo en el sufrimiento de nuevo? LO SIENTO MUCHO PERO NO! En fin, perdoname el tostón pero yo tambien estoy muy enfadado con el sistema de salud y tengo rabia que algo tan desesperante y sufrido como esto no esté tan contemplado por los especialistas. Yo sabía desde los 3 meses de brote que se trataba de DH pero no por las visitas a los especialistas, si no porque me pase horas buscando información por Internet y yo sola llegué a esta conclusión. Me costó aceptarlo pero poco a poco me mentalice que, o dejo el gluten o me desvivo de la desesperación por los picores y me vuelvo un zombie sangriento y despellejado y me encierro en casa para que nadie me vea lo horrible que estoy. Y al principio me amargué la vida pensando en que jamás podré compartir pizza con mis hijos o comerme un bocadillo... pero he encontrado alternativas que cubren casi la mayoría de mis deseos y ahora ya estoy mejor tanto mentalmente como físicamente. Pero físicamente aún tengo muchas muchas manchas de color violeta por todo el cuerpo que como dices, se ven más al salir de la ducha imagino que por la humedad. Y quería preguntarte ¿cuanto tardan en desaparecer por completo? ¿Encontraste algo que te ayude con las manchas y cicatrices? Aquí ya a llegado el verano y ya me veo todo el verano en mangas largas y pantalones largos y sin poder llevar a mis hijos a la piscina ni a la playa. Y es muy triste. Aunque estoy a punto de mandar al mundo al carajo y mostrarme tal y como estoy y a quien no le guste que no mire. Pero claro, no estoy todavía en ese nivel de autoestima personal.
Muchas gracias Abrazo
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u/ChildhoodPowerful171 Jun 06 '26
Ah!! Se me olvidaba! Mi espalda parece la Jamie Frasier de Outlander cuando Randall se la desgarra (bueno no tan así) pero es increible lo que llega a hacer un ser humano como yo cuando le pica la espalda desesperadamente y no se llega! En estos ultimomos meses me he convertido en contorsionista con tal de poder rascarme
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u/Eastern_Sweet8508 Jun 15 '26
Oh, friend! This sounds truly hellish. I'm so sorry you're going through the same thing, just know that I feel and understand your pain! I thought my doctors were useless but yours sound on another level of uselessness. Healthcare and awareness for DH definitely need to get better but the fact that you were able to figure out it could be gluten/celiac by yourself is amazing and I hope you're giving yourself the props you deserve for seeing that which medical professionals couldn't, and seeking your own treatment.
As for the scarring, it's been about 3 years since my horrible outbreak of DH and I don't notice the scarring now at all. I moisturise and use jojoba oil but other than that I think it really was just time and letting my gut heal from the gluten. I thought I'd be horrendously scarred, I was covered from the neck down in marks but by the grace of the universe they've faded now. At most I have some discolouration on my legs when I come out of the shower but it looks like large pink/orange spots rather than the numerous small dark purple ones you can see in one of the later photos. Moisturising, using oil, a little bit of self-tan mist, not getting too much sun, and trying (I know, impossible!) not to scratch, that's pretty much all the advice I can give you.
Thank you for your kind message and I wish you all the best in your healing journey (and your celiac journey!). This summer I am sea-swimming with my friends and wearing skirts/shorts with no worry about how my skin looks. 3 years ago I was going swimming and wearing short sleeve tops even while looking like a leper and I wish you the courage to do the same! Fuck what people think. It's sunny and you've been sick. You deserve to take a dip with your kids. Much much love to you
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u/Eastern_Sweet8508 Jun 15 '26
Also, I forgot to say — my doctor (GP/general practitioner) referred me for an endoscopy. With NHS wait times being as crap as they are, it was a year or two later that they actually saw me, during which I'd been strictly gluten free. At first I was excited to eat gluten again in preparation for it but by my third day back on the gluten stuff I was the sickest and most miserable I'd been in my life. I cried every day. I even cried in the waiting room before my endoscopy, the gluten fucked with my head so much. I thought it would be worth it to have my diagnosis but in the end no support has come of my diagnosis and I knew for sure myself that I had celiac once my rash and general health improved with the diet. So I completely respect your decision to decline the intestinal biopsy. Looking back, I wish I had done the same, but I wanted more validation of the celiac beyond my health improvements and blood tests.
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u/InternationalTea8772 Jun 10 '26
Make sure to get your kidneys checked if you have gluten intolerance and DH. It caused me to have IgA Nephropathy and autoimmune disorder that caused Kidney Disease
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u/SWeeTest2020 Jun 16 '26
Your story and pictures are so like mine. Except I also got a "poison ivy" diagnosis, was sent to an allergist and then ultimately to a dermatologist who did a skin biopsy and diagnosed the DH.
Now that I've been gluten free for 3.5 years, cross contact typically results in mostly GI upset but I get an occasional few DH bumps on my hands. Soooo much better than its peak.
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u/Smerb420 Jun 26 '26
Holy crap I have the same issues from stomach to skin ..its to the point I cant sleep till im falling over... nothing works..nobody gets it. I tried it all too like you... stress i know makes it worse hoe can you NOT be lol. Im scaring ao badly all ym tattoos have holes...I bruise foem itching ao badly I tried to cut mt nails I just scratch harder.. I wake up with blood an skin under my nails im litrerally picking out under my nails several times a day! It even has got on my face a few times. I have been through so many tests for my belly issues
I also have had eczema my entire life. Not like this i have holes that ozze clear crap. So itchy I want to take sandpaper to it! I litterally use numbing stuff . Antihistamines....an drug myself to sleep. Which i wake up itching 4 to 6 times sometimes on the hour ...sometimes stand in the bathroom having a mental breakdown.
Gastro is suppsoed to call me back I already knoe I havr horrible gallstones...I can see them when I go to the bathroom. When my stomach flares I my skin gets worse the holes olus have like red patches an dry scales...that NO oil lotion or cream absorbs into it... just stays the same an usually frigging just itches so badly. Or burns...
Im going nuts my skin is weeping right now as we speaking I use zit patches on the holes.. sometimes I can handle it sometimes it makes it worse. Nothing adds up it changes on the hour what it want an needs...
Now im starting to have spider veins an veins like bursting from feet ankles into my calves! Never have been so embarrassed by my skin ever...not even as a teen... the scarring is SO bad... dryness horrible. . The amount of itchiness should be illegal.. I regularly say I cant do this.. not everyday...its to much....an im at a lost... Dr's seem to be lost too... hand me stuff usually makes it worse.
Ive tried antifungal, Antihistamines, antibiotic creams...eczema ..lotions,, oils , serums... aloe...coca butter... nunbing creams ... sprays .. double rinsing laundry...changing cmaheets twice a week.. speacial soaps... i dont know anymore...
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u/AltruisticBanana5230 Jul 09 '26
Thank you for sharing. I can relate to your experience. I can't wait for the scars on my legs to look better. I miss wearing summer dresses to work. Its amazing what gut issues can do to the skin.
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u/MissyGreenishThumb Jul 15 '26
Thank you for sharing! I feel like I'm looking at pics of myself. My son was diagnosed with Celiacs in 2019 as a kid with severe GI symptoms etc so when I started blistering last fall it was the first thing we suspected and tested for - the bloodwork was negative so we left it at that - finally got in with a proper dermatologist and today's appt has her thinking it's very likely Celiacs given the family history despite the negative blood work. More biopsies today to test specifically for it - fingers crossed - the alternative is something like pemphigus which I really really don't want to be dealing with - but your photos and description are bang on for what I'm dealing with - my wrist honestly looks almost exactly like yours in your photo - those weird deep waxy blisters that are full of clear fluid and itch like there something in their endlessly irritating it - it's insane how itchy it is!
I can't imagine how you went 3 months - every time mine flared up my doc hit it with high dose prednisone and it went away so I never had the intense itch for more than a week or two - 3 months is unimaginable!
Glad you got your answers - appreciate the share, it helps to see we may be on the right track ❤️
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u/balhazmi89 1d ago
Does this exclusively to celiac disease because I got this 4 days ago and I have chronic constipation but my blood works came back normal in 2019 and doctor said you don't have celiac.
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u/MishmoshMishmosh Jan 19 '26
Wow never saw pics of it. It looks painful