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Is This DH? Looking For Answers...

WesternMA12

By WesternMA12
in Dermatitis Herpetiformis

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WesternMA12 Newbie
WesternMA12
Posted

Hello, this is a photo of a rash that I have had on and off for a few years now. It appears in between my elbows and on both of my wrists. This is it when it is VERY MILD and a few days after I have scratched it really badly. I am in a lot of pain from it, after scratching it it hurts a lot. (sorry for the crappy macbook photo quality)

33nexkz.png

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emaegf Newbie
emaegf
Posted

Yep it's DH. Take an antihistamine, put a Bennydrel type cream on it to reduce the itch, cold works better to decrease the pain and itch. I spray Bactine Pain Relieving Cleansing Spray on mine after I scratch them but it does hurt at first when you spray it on. But it helps to decrease the itching a lot.

eatmeat4good Enthusiast
eatmeat4good
Posted

Hello, this is a photo of a rash that I have had on and off for a few years now. It appears in between my elbows and on both of my wrists. This is it when it is VERY MILD and a few days after I have scratched it really badly. I am in a lot of pain from it, after scratching it it hurts a lot. (sorry for the crappy macbook photo quality)

33nexkz.png

Yes, that is exactly what mine looked like. I use Pain Relieving Ointment Walgreens brand of benzocaine that relieves the pain temporarily.

WesternMA12 Newbie
WesternMA12
Posted
  • Author

Thanks guys, it feels good to finally figure out what this is. I went from not knowing what celiac disease is to firmly believing I have it in a matter of like two days so I appreciate it the replies. My other question is, is it true that if you have DH you do have celiac? It is really hard to get a dermatologist appointment around here, can a GP diagnose with DH? I am going to see the doctor when I get home next week from school, and I am only home for 4 weeks. Will that be enough time to get blood work back and get a diagnosis? I live on campus at my university and in order to be accommodated for I need a form from the doctor, so I would like to get this going. I also have had these symptoms for a very long time so I would like to start getting the gluten out of my system so I can be healthy again. Thank you!

mushroom Proficient
mushroom
Posted

GP's normally don't like to do biopsies. A dermatologist or general surgeon can do a biopsy for you, and remember - next to the lesion, not on it, if I haven't already said this. And if the biopsy is positive, you have your diagnosis, you are a celiac, and you don't need to do any blood testing or GI biopsies. :) So if derms are hard to get into, you might try for a general surgeon and see if that is quicker. Yes, that letter with the diagnosis is important for dorm living, but if you can short-circuit the diagnostic process that would be good. And a word of caution: those with DH will often test negative on blood work and endoscopic biopsy :( it seems.

emaegf Newbie
emaegf
Posted

DH is also known as the skin manifestation of celiac disease.

cassP Contributor
cassP
Posted

i had a small patch on my stomach below my navel- it only showed up after i went gluten free... to me, it really seems as if it was part of a detox.. anyways, i had it for about 4 months-> it wasnt too bad, and i wanted it to stick around so i could show my Gi. then i started putting an Ionized Silver ointment on it- it calmed the itch right away and then started fading... i still have a discoloration, but no itch. hope it goes completely away.

i decided to try the Silver ointment because everyone says how they have to take Dapsone to help get rid of it ( a strong antibiotic). Silver naturally is an antibiotic with some antiinflammatory effect. try to get ionized and not colloidal, colloidal could turn your skin gray...........

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ravenwoodglass Mentor
ravenwoodglass
Posted

Yea that does look like DH. Do drop iodized salt for a bit until the rash has been gone for a while. You could try going into your regular doctor and getting the blood tests done and seeing if you can get a referral for a quick biopsy. Sometimes if another doctor calls and stresses he need for speed the derm will manage to fit you in. Perhaps your doctor might be open to writing you a 'script' for the gluten free diet while you are in the diagnostic process. It doesn't hurt to ask. Even if you can't get off the meal plan until you are diagnosed some colleges will allow microwaves and a small fridge in the room that would enable you to eat gluten free and avoid the dining hall.

WesternMA12 Newbie
WesternMA12
Posted
  • Author

I have acquired all the recommended ointments and it is significantly going down, will I still show a positive if i get it tested and it is much less inflamed? I don't know ifn inflamed is the right word, but you know what i mean.

mushroom Proficient
mushroom
Posted

I have acquired all the recommended ointments and it is significantly going down, will I still show a positive if i get it tested and it is much less inflamed? I don't know ifn inflamed is the right word, but you know what i mean.

It is recommended that the biopsy be taken of skin adjacent to an active lesion. Now I am not sure how active that lesion needs to be, but it would seem that if it is fading then the antibodies which the biopsy is looking for will be in retreat :unsure: Perhaps you should keep one untreated???

eatmeat4good Enthusiast
eatmeat4good
Posted

I have acquired all the recommended ointments and it is significantly going down, will I still show a positive if i get it tested and it is much less inflamed? I don't know ifn inflamed is the right word, but you know what i mean.

I read somewhere that the antibodies remain in the skin for some months after going gluten free. Depends how badly you want the testing. I had active lesions and the Dermatologists I went to refused to biopsy mine. They said it was "acne" or "neurotic excoriation". One was a Chief of Dermatology at a major medical center. Go figure. I can tell you from experience of 7 years with DH that it does not take much to activate it. If you want it activated just before the testing you could eat gluten for one or two days. Mine activates with even the slightest of cross contamination. (like a kiss from a gluten-eater) It is sadly true. If you have a smart dermatologist they should biopsy it like mushroom said next to the lesion. I wish mine went away as fast as yours. That is great! The ointments are just a comfort measure...they won't effect your testing at all just so you know. Only gluten and iodine activate DH and the associated antibodies. I hope you will let us know what you find. Good luck!

cassP Contributor
cassP
Posted

I read somewhere that the antibodies remain in the skin for some months after going gluten free. Depends how badly you want the testing. I had active lesions and the Dermatologists I went to refused to biopsy mine. They said it was "acne" or "neurotic excoriation". One was a Chief of Dermatology at a major medical center. Go figure. I can tell you from experience of 7 years with DH that it does not take much to activate it. If you want it activated just before the testing you could eat gluten for one or two days. Mine activates with even the slightest of cross contamination. (like a kiss from a gluten-eater) It is sadly true. If you have a smart dermatologist they should biopsy it like mushroom said next to the lesion. I wish mine went away as fast as yours. That is great! The ointments are just a comfort measure...they won't effect your testing at all just so you know. Only gluten and iodine activate DH and the associated antibodies. I hope you will let us know what you find. Good luck!

ya,um WHY do these doctors refuse tests that we ask for???? i practically have to beg my doc at times- i begged the other day for the Hashimoto's antibodies test- she said "well, maybe"... i was like; "PLEASE!!!"

i asked her 6 weeks ago when i got my Lipids panel done, if i could get the Lipoprotein a test (because it runs HIGH in my relatives- and ive had 3 uncles die prematurely from heart disease)- i begged like 3 times, she still wouldnt order it

ridiculous

Lincoln Rookie
Lincoln
Posted

ya,um WHY do these doctors refuse tests that we ask for???? i practically have to beg my doc at times- i begged the other day for the Hashimoto's antibodies test- she said "well, maybe"... i was like; "PLEASE!!!"

i asked her 6 weeks ago when i got my Lipids panel done, if i could get the Lipoprotein a test (because it runs HIGH in my relatives- and ive had 3 uncles die prematurely from heart disease)- i begged like 3 times, she still wouldnt order it

ridiculous

My recommendation; Find a new doctor, I have found that many are seriously lacking in knowledge of coeliac disease and DH, it took me to end up in hospital while losing nearly 2Kgs per day (I only weighed 56Kgs to start with) until a doctor noticed the DH on my arm and quizzed me about it and then told me to try a gluten free diet, without him I'd probably still be screwed. And seriously if you have to beg for tests that's just not cool.

WesternMA12 Newbie
WesternMA12
Posted
  • Author

Thanks guys, got my blood panel done the other day should get my results on Monday

lovegrov Collaborator
lovegrov
Posted

Your GP should be able to get you a faster appointment with a derm if you need it. Also check on dapsone to help you with the DH.

richard

WesternMA12 Newbie
WesternMA12
Posted
  • Author

If you have DH are you more likely to get a false negative on your blood panel? I feel like I've heard that but I am unsure.

mushroom Proficient
mushroom
Posted

That is my understanding. Same on the EGD and biopsy. I don't remember where I read this.

cahill Collaborator
cahill
Posted

Hello, this is a photo of a rash that I have had on and off for a few years now. It appears in between my elbows and on both of my wrists. This is it when it is VERY MILD and a few days after I have scratched it really badly. I am in a lot of pain from it, after scratching it it hurts a lot. (sorry for the crappy macbook photo quality)

33nexkz.png

I had a rash that looked EXACTLY like that on both my forearms the weekend before i got married ,,I was 17 at the time ......I was not diagnosed with celiacs until i was 53 :angry:

WesternMA12 Newbie
WesternMA12
Posted
  • Author

When I went to the doctor he didn't even look at it but said it was excema, he gave me a prescription for triamcinolone and when I put the cream on it burned and was extremely painful I had to rub it off right away and it burned for a long time after, thanks doc.

Should get the results of my blood panel today though

WesternMA12 Newbie
WesternMA12
Posted
  • Author

Called the doctor and he said it came back normal. Waiting to get the results myself and going to call a GI. I just really would like to find out what is wrong with me, and I want to look at my results and perhaps get a biopsy because I'm not convinced.

cassP Contributor
cassP
Posted

Called the doctor and he said it came back normal. Waiting to get the results myself and going to call a GI. I just really would like to find out what is wrong with me, and I want to look at my results and perhaps get a biopsy because I'm not convinced.

always a great idea to get a copy of the results and learn about them yourself- they often dont order a complete panel, or they may miss something.

CrazyforCandles Rookie
CrazyforCandles
Posted

I have had what I believe to be HD or DH for 4 months. After finding this site I gave up Gluten and Iodized Salt and Shellfish (Iodine) and the rash has gotten better, but not gone yet. Switch out all of your seasonings. That was the main source of my salt issue. I'm still finding many products that contain G, every day in my home though. From what I read it can take months...even up to a year to rid yourself of the gluten, and until that is gone...I think the HD stays. :(

I'm going to order some Silver Strips from Whole Foods that they keep talking about here-- it works for many and I'm willing to try anything. Good luck to you and if you find something that works, keep us posted.

emaegf Newbie
emaegf
Posted

The best thing I have found that works once an out break starts is a product called RM-10 by Garden of Life. Start with 2 a day and they should start healing up and stop itching in a few days.

  • 4 weeks later...
WesternMA12 Newbie
WesternMA12
Posted
  • Author

Alright so update: I had an appointment with a GI but he had a family emergency and I met with a nurse practitioner instead. She was awful. When I brought up DH she looked at me like I was stupid and said "celiac is an autoimmune disease, it has nothing to do with your skin." ..... then she told me that the celiac panel has never provided a false negative ever and that I couldn't possibly have celiac because I am a healthy weight. I really think that what I have on my arm is DH, but I am feeling so incredibly discouraged because she didn't even know whati t was.

eatmeat4good Enthusiast
eatmeat4good
Posted

I'm sorry that you had that experience. It truly sucks and it is very disheartening. However, I am happy that you have this resource to be able to follow your instinct and try to get rid of your DH by following this forum and being gluten free.

I was diagnosed with a herpes, neurotic excoriation, adult acne, and I practically begged for a biopsy. I saw Rheumatologists who told me I didn't have an autoimmune disease, I had a problem with my skin.

It is maddening, the way I would describe the intense pain. And the other symptoms of Celiac too.

7 years of Dr.s and I wasn't even close to a solution until I found it here 4 months ago.

It is so sad that there is such limited knowledge and blatant disregard for symptoms.

I even had a Dr. ask me if I had ever been on Dapsone, but he didn't follow up with any explanation of Celiac.

However, congratulations! You may be smarter than your doctors. You certainly are since you found this site.

I hope you find some medical support and/or testing.

But if you don't, just be very grateful for the information here and keep trying.

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