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DH Photo Bank


dani nero

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Leeger Rookie
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.

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Scott Adams Grand Master
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.

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Leeger Rookie
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.

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europyia Rookie
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!

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Anniehall Enthusiast
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!

AB92BA07-6266-48D4-A25D-9DDCCA72AA4B.webp

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. 

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Leeger Rookie

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.

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Anniehall Enthusiast
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. 

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Leeger Rookie
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. 

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  • 3 months later...
Taylerannlv Newbie

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!

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trents Grand Master

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.

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Taylerannlv Newbie
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 😅

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trents Grand Master
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.

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DiBruen Newbie
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. 

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  • 2 months later...
Scott Adams Grand Master

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. 

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  • 2 weeks later...
JenFern Newbie

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

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.  

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    • cristiana
      PS  You asked about severe symptoms.  Yes, I can tell you that the one and only time I have taken a really major gluten hit in recent times I had chills, sweats, vomited and thought I was going to pass out.  I also felt my heartbeat was affected.  I was really concerned at the severity of the reaction. And that was down to eating one piece of homemade fruitcake - a relative of mine had made me a lovely cake but thought all Dove flour was gluten-free, it isn't, they also do organic flour!   
    • cristiana
      Hi @Louise Broughton Fellow Brit here! I am sorry to hear of your health issues. If I may chip in here, I think it might be worth your while at least having the blood test to see if you have raised antibodies. Whilst I agree under ideal circumstances people need to eat gluten for a period before both the blood test and endoscopy, it could well be that your antibodies are still raised enough to show that you are a coeliac.  I gave up gluten in 2013 and it took around 8 years before my blood tests were normal again, and I was very strict with my diet. To save time I've just copied this over from a recent post on another thread and adapted it for you - forgive me, but the advice is almost the same I have just given to another UK coeliac whose daughter has been having issues: Generally speaking most UK coeliacs will get a lot of help from the NHS, such as a nutritionist, annual blood tests and reviews with a gastroenterologist to check for dietary compliance and any complications that can arise from coeliac disease, monitoring for osteopenia/porosis, which is something that coeliacs can be prone to, extra vaccinations where required, and in some regions of the UK, gluten-free staple foodstuffs on prescription.  Also, it has been my experience that once being on the books of a gastroenterologist means I have been able to make appointments direct with the hospital to see one, rather than being re-referred by a GP which saves so much time. If for some reason your are finding it to get tested under the NHS you may wish to think of one other option: going private just for the diagnosis.  I did this, with a Nuffield based gastroenterologist, who also works for the NHS.  This sped up the diagnosis process by a few months and once diagnosed by him, he offered to put me straight into the NHS for a nutritionist and the other benefits listed above.  If interested, you can ring their offices and find out how much it will cost.  Usually their secretaries are very conversant with the system so should be able to give you the info you require. I hope this may be of help. Cristiana    
    • Scott Adams
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