DH Photo Bank

[Leeger]

On 4/13/2022 at 4:00 PM, Bigdogtimo said:

I was misdiagnosed with Bullous Pemphigoid when in fact it was DH. I suffered for over 6 years with horrible blisters on my arms, legs and buttocks. I took Minocycline for 6 years with no relief. After switching doctors for the third time I found one who recognized DH immediately. Three days of dapsone and gluten-free diet and the blisters I had lived with were disappearing before my eyes.
Don’t be afraid to get a second opinion or switch doctors.  

I don't get blisters, just intense itching that comes from deep under the skin and then little red spots that bleed.  I never know if it is just a garden variety itch until I itch it, then I know.  I keep my fingernails cut down to the quick but the itch is so intense, a shoe horn works pretty well.

[Scott Adams]

23 hours ago, europyia said:

The itching is INSANE!!!!

Consider lidocaine 5% cream, which can be bought over the counter in the USA, and/or Ben Gay cream, which some with DH have reported to help stop the itching.

[Leeger]

3 hours ago, Scott Adams said:

Consider lidocaine 5% cream, which can be bought over the counter in the USA, and/or Ben Gay cream, which some with DH have reported to help stop the itching.

Thank you, Scott.  I will try your suggestions.  The only other thing that helps is Lotrimin powder which I have only found on Amazon.  I do use Triamcinolone Cream but since most of my body is involved, it just isn't feasible to use it twice a day.

[europyia]

On 4/29/2022 at 12:49 PM, Scott Adams said:

Consider lidocaine 5% cream, which can be bought over the counter in the USA, and/or Ben Gay cream, which some with DH have reported to help stop the itching.

Thanks Scott!

[Anniehall]

On 4/17/2021 at 2:10 PM, morganastar said:

I know it's only the teeniest of photos, but what are people's thoughts!? Not the greatest photo...not an easy angle to get 😳 the butt/hip area! Only just saw it today in week 6 of my gluten challenge ( D, C, nausea, tiredness, horrible aches, shivers and wobbly, physically throwing up, just feeling like been hit by a truck) only saw this rash today when I was itching it tbh..kinda stingy and think I've popped a few blister bits  😖 blood test on Tuesday and speaking to Dr after...Just ate pizza so wish me luck!

DH and herpes look very similar. Herpes swabs are most accurate in the first 24 hours after a blister forms. One thing I noticed from reading endlessly is dh tends to be symmetrical on the body where as herpes tends to be unilateral.  Both dh and herpes have the same triggers because plant based proteins are gluten cross reactives which can trigger dh.  Herpes is fed by too much amino acid arginine in the absence of lysine. All plant based proteins have way more arginine than lysine. 

[Leeger]

Thank you.  My skin problems started about three years after I went gluten-free.  The itching is intense and deep into the skin, enough that I get black and blue marks but may or may not get the breakouts and bleed.

[Anniehall]

1 hour ago, Leeger said:

Thank you.  My skin problems started about three years after I went gluten-free.  The itching is intense and deep into the skin, enough that I get black and blue marks but may or may not get the breakouts and bleed.

My skin issues cleared for about 7 months and then started up again after going gluten free. Almonds for me were the next discovered culprit. Pretty much all plant based proteins are suspect or have caused skin reactions for me. Some beans are possibly safe but I'm waiting for more testing before trying them in an elimination diet test again. I can have tapioca to make bread, pizza crust etc but tapioca may be a problem for people who have latex allergy. 

I can have corn and sugar too. Curious about millet since it's in the same subfamily of grasses as corn and sugar. 

[Leeger]

57 minutes ago, Anniehall said:

My skin issues cleared for about 7 months and then started up again after going gluten free. Almonds for me were the next discovered culprit. Pretty much all plant based proteins are suspect or have caused skin reactions for me. Some beans are possibly safe but I'm waiting for more testing before trying them in an elimination diet test again. I can have tapioca to make bread, pizza crust etc but tapioca may be a problem for people who have latex allergy. 

I can have corn and sugar too. Curious about millet since it's in the same subfamily of grasses as corn and sugar. 

Thank you.  You give me food for thought...excuse the pun.  I do need to keep a food diary and note which days are worse than others.  Then do elimination trials to see if it makes any difference. 

[Taylerannlv]

Okay so I’ve been self diagnosing myself for months now because I had developed this rash and it was all over my legs, my stomach, my arms, even my nipples. I went to the dermatologist and he immediately diagnosed me with scabies.. which I thought was weird.. he didn’t even send it to a lab or test it just by visual observation.. I drowned myself in ointments for months trying to get rid of it and it kept getting worse, I did my own research and concluded that it was probably excema. I got moisturizers, coconut oil, I even cut out sugar from my diet (that helped cure my sisters excema) and it’s been about 3 weeks not and seems to not be improving.. until tonight I realized that every time I ate gluten my rashes would seem to get very itchy. They weep fluid all day, itch like crazy, and scab over.. then start again the next day. They seem to move around and some stay in the same areas around the back of my knees, my lower and upper legs, my back and my inner elbows. I’m gonna upload pics so you guys can tell me what you think? Idk what else to do but try the gluten free diet and see if anything changes…

i don’t have a pic of the back of my knee.. that weeps fluid all day and is a huge sore, as well as my whole right foot big toe. My toe weeps fluid and have little blisters all over it and gets very inflamed. 
 

please help!

[trents]

I would advise against going gluten free until you have been tested for celiac disease. If you go gluten free any testing will be invalidated. I imagine you are suspecting you might have DH (Dermatitis Herpetiformis) which is definitive for celiac disease. But you really don't know if the rash is actually DH. Maybe the shortest testing trajectory in this case is to make an appointment with a dermatologist and have the rash biopsied while still consuming gluten so the outbreak would be fresh.

Most people who have DH also have villi damage in the small bowel which is not something to ignore. If you go gluten free now and later want to go in for testing you would need to restart gluten in your diet for 6-8 weeks and you would likely find your reaction would be worse. If the rash turns out to not be DH when biopsied, your next step would be, while still consuming regular amounts of gluten, to get a blood antibody test specifically for celiac disease.

[Taylerannlv]

3 minutes ago, trents said:

I would advise against going gluten free until you have been tested for celiac disease. If you go gluten free any testing will be invalidated. I imagine you are suspecting you might have DH (Dermatitis Herpetiformis) which is definitive for celiac disease. But you really don't know if the rash is actually DH. Maybe the shortest testing trajectory in this case is to make an appointment with a dermatologist and have the rash biopsied while still consuming gluten so the outbreak would be fresh.

Most people who have DH also have villi damage in the small bowel which is not something to ignore. If you go gluten free now and later want to go in for testing you would need to restart gluten in your diet for 6-8 weeks and you would likely find your reaction would be worse. If the rash turns out to not be DH when biopsied, your next step would be, while still consuming regular amounts of gluten, to get a blood antibody test specifically for celiac disease.

Okay good point! I’ve looked into celiac disease as well and was kind of shocked about the symptoms I’ve been having for a long time.. severe pain, diarrhea with food, doctor told me I had tons of inflammation in my stomach lining (not sure if that’s connected or not) but I appreciate your feedback, it’s been very difficult dealing with this and not knowing what to do after being misdiagnosed from the dermatologist 😅

[trents]

5 minutes ago, Taylerannlv said:

Okay good point! I’ve looked into celiac disease as well and was kind of shocked about the symptoms I’ve been having for a long time.. severe pain, diarrhea with food, doctor told me I had tons of inflammation in my stomach lining (not sure if that’s connected or not) but I appreciate your feedback, it’s been very difficult dealing with this and not knowing what to do after being misdiagnosed from the dermatologist 😅

It may be quicker and easier just to get an appointment with a GP and ask him to run a full celiac panel blood test: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/. Don't let the doc get away with just ordering the tTG-IGA. 

You can also purchase a home celaic test kit from Imaware for about $100 US. It involves a finger prick blood sample like diabetics do for checking blood sugar.

[DiBruen]

17 hours ago, trents said:

It may be quicker and easier just to get an appointment with a GP and ask him to run a full celiac panel blood test: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/. Don't let the doc get away with just ordering the tTG-IGA. 

You can also purchase a home celaic test kit from Imaware for about $100 US. It involves a finger prick blood sample like diabetics do for checking blood sugar.

 

17 hours ago, Taylerannlv said:

Okay so I’ve been self diagnosing myself for months now because I had developed this rash and it was all over my legs, my stomach, my arms, even my nipples. I went to the dermatologist and he immediately diagnosed me with scabies.. which I thought was weird.. he didn’t even send it to a lab or test it just by visual observation.. I drowned myself in ointments for months trying to get rid of it and it kept getting worse, I did my own research and concluded that it was probably excema. I got moisturizers, coconut oil, I even cut out sugar from my diet (that helped cure my sisters excema) and it’s been about 3 weeks not and seems to not be improving.. until tonight I realized that every time I ate gluten my rashes would seem to get very itchy. They weep fluid all day, itch like crazy, and scab over.. then start again the next day. They seem to move around and some stay in the same areas around the back of my knees, my lower and upper legs, my back and my inner elbows. I’m gonna upload pics so you guys can tell me what you think? Idk what else to do but try the gluten free diet and see if anything changes…

 

https://share.icloud.com/photos/0e2Kawu0hfOlCZLBui4Ci_kZw

https://share.icloud.com/photos/09fnxzA4aDuhYtu4G1eJp4QNw
 

https://share.icloud.com/photos/019bYLB9d_Ct34kz8VUCCizzw

 

i don’t have a pic of the back of my knee.. that weeps fluid all day and is a huge sore, as well as my whole right foot big toe. My toe weeps fluid and have little blisters all over it and gets very inflamed. 
 

please help!

I went to 2 dermatologists, biopsy of sore on my scalp 2 weeks later the doc still didn't know other than its not bacterial..... Both just ordered antibiotic, I didn't take because dang it they're not bacterial😒 still no celiac test I've been asking for months from my PCP, finally Gastro doc colonoscopy and endoscopy with biopsy scheduled. I've had no relief going on 2 years with these sores, it's debilitating. I've tried specialty soaps, shampoos, organic pure coconut, lotions nothing helps. I'll update what is found out after my procedures.... If anyone has something we can use to help relieve itch n pain please let us know. 

[Scott Adams]

The images you shared, especially the one on the far-right, look exactly like the patch of DH I used to get on the back of my thumb. 

[JenFern]

This is awesome, I had no idea Celiac could cause a rash **scratches annoying rash**  that would explain a few things for me...  

I haven't had it looked at because it's just annoying little red scaly patches that itch so bad.  The ones on my back are the worst.  It comes and goes.  This is a really useful thread. Thank you.  

[KeriRae]

I've had this same rash on my back on and off for the last year or two.  I was taking LDN to help with other issues but quit awhile back. I'm wondering if LDN would help with this rash. 

[trents]

@KeriRae, have you been diagnosed with celiac disease or with dermatitis herpetiformis?

[Harris]

I’ve looked through some of those photo threads before, and honestly it can be helpful, but also a bit confusing at the same time.

dermatitis herpetiformis can look pretty different from person to person. Some people get small blisters, others just red bumps or patches, and most of the time it’s extremely itchy.

So even with photos, it’s easy to second guess yourself. A lot of people end up thinking it’s eczema or something else at first.

If you’re trying to compare, I’d just take it as a rough reference, not a diagnosis. Getting it properly checked (like with a biopsy) is really the only way to be sure.

But yeah, having a place where people share real photos does help you feel a bit less alone with it.

 

[Scott Adams]

I agree that it can vary from person to person, but hopefully sharing real photos of dermatitis herpetiformis, along with its symptoms, can help get people who have no idea what their problem is headed in the right direction.