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Only Symptom Is Dermatits Herpetiformis

Parrot

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Parrot Newbie
Parrot
Posted

Hi,

I'm new to the forum, and have not been diagnosed yet. After I "contracted" a rash in what my husband and I call the "Nether-regions" after going camping last summer at a state park, I have been suffering with an itchy rash since early September. It didn't show as a rash at first, but my skin there was extremely itchy, I scratched the heck out of it, and then it bled. It started to spread to my outer buttocks, then to my legs, and now the "rash" is fairly generalized, with my face, upper neck area, and the soles of my feet being unaffected. I saw the dermatologist in mid-November after my family doc said I had a staph infection on my skin, and prescribed triple-antibiotic ointment for my nostrils, and a low-dose steroid cream, both of which did nothing to clear up the problem. After seeing the dermatologist, I got a treatment for scabies and a skin-scrape (my idea), and she also prescribed hydroxizine, a steroid cream, and gave me a cortisone shot. The doc checked the skin scrape and said she didn't see any mites, but that the rash could be scabies. Just a few days later (even before using the scabies lotion that weekend), I started to clear up, and the itching was gone, as was the rash, by the end of November. So naturally, I thought must have indeed gotten scabies from the campground restroom. Anyway, by mid-January, the rash came back, is in full-force or even worse now (although I knock myself out with the hydroxizine every night), and now my husband has it also. He had a biopsy done, but he didn't ask them to check for IgG or A, or for DH, but they dx'd it as dermatitis, or just dry skin, and gave him the same steroid cream, pills and a shot. He got very little, if any relief.

I have an appt next week with the derm again, and will get the biopsy done, and hopefully blood work, as well. The point of my post is has anyone gotten just the skin condition with this, without any real GI problems? My rash started really as an itch, and then became a "rash" that appears much like the photos I've seen. I've had just one or two of the blisters, and they were on my heels. And has anyone gotten it simultaneously, or close to the same time, as another family member or spouse? My husband has some issues in the GI area, but I really don't that I'm aware of. I just turned 40, and do have profound inhaled allergies,and adult acne that is somewhat controlled by antibiotics and a topical rx.

I am kind of hoping this is DH/celiac, and not some non-specific dermatitis or ezcema, as I am tired of feeling worn out and itchy all the time! I am willing to go gluten-free if necessary, too. I know that will be a challenge, but I'm up to it! Thanks for any help anyone can give me!

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TestyTommy Rookie
TestyTommy
Posted

Hi Parrot!

Yes, absolutly you can have DH without any GI symptoms. For some people, the GI symptoms start later (like me, for instance), and some people never get any GI symptoms. You might want to check out the book "Celiac Disease - a hidden epidemic" by Peter HR Green. (He's some big shot at Columbia medical school) He says that not only do many people with DH not have GI symptoms, they have normal intestinal biopsies. But DH is unequivacably connected to celiac. if you have DH, you have celiac. Period. End of story.

Take some time to go through the archived messages on this site. They helped me immensely. The one theme you will find over and over again is that doctors DO NOT want to diagnose celiac disease. They will fight you very hard and often refuse to test you. A big problem with this disease seems to be that it cuts across traditional medical specialties, so we get passed along from doctor to doctor with each one shrugging their shoulders and telling us to go away and quit whining.

Good luck. Be prepared to have to fight for a diagnosis. It stinks, but for what it's worth, we've all been through it, too.

Rusla Enthusiast
Rusla
Posted

For me it was the DH which appeared last. If it was not for the skin biopsy and the DH I would have probably been told it was all in my head for the rest of my life.

WGibs Apprentice
WGibs
Posted

I just wanted to add that DH is not contagious, so the fact that your husband also developed a similar rash may suggest it's something else. Of course, it's possible that you both developed DH, or that you have different rashes and it's just coincidence that you got them at the same time.

Parrot Newbie
Parrot
Posted
  • Author

Thank you, everyone- I will keep you posted on how this turns out after I see my doctor on Friday, and when the biopsy/blood work results are back. My family doctor is open to trying things, as she has naturalpathic tendencies :P , if the dermatologist is reluctant.

Guest nini
Guest nini
Posted

I had rashes like what you described and was told that they were from systemic Candida... I did a Candida cleanse which did help clear up the rashes, but I still had gi probs and was dx'ed with Celiac 3 years ago.

SueC Explorer
SueC
Posted

I had DH for 20 years that drs kept telling me was excema.... Last year I came down with severe nerve problems in my arms and legs and a bunch of other stuff. We tested for celiac as a shot in the dark. My Ttg level was 187, and my endoscopy showed complete villious atrophy with NO GI sympyoms whatsoever!!! I wish I was diagnoses on DH alone. If I caught this 20 years ago I could have avoided getting so sick! I hope you find your answers.

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Parrot Newbie
Parrot
Posted
  • Author

Wow, well I sure hope I don't have to go that long being misdiagnosed. What is scary is that the rash came on suddenly, but took a few weeks to spread to different parts of my body! It is all symetrical, as well. Except for acne or the occasional bug bite reaction, a bit of a nickel/jewelery sensitivity from time to time, I haven't had any chronic skin conditions before.

My parents both have psoriasis, one worse than the other, my dad's brother does as well, and my brother has ezcema, so skin issues run in my family. It wouldn't surprise me that gluten-sensitivity and/or intolerance is a common denominator. Btw, my parents and uncle are all diabetic as well (type 2), with mom being insulin-dependent.

Thank you, again for your encouragement!

Smitten Rookie
Smitten
Posted

I'm jumping in kind of late. I'm "catching up". I don't have a rash but have VERY dry, VERY itchy, scaly spots on both my lower legs. Does DH have to be in a form of a rash? I'm working the the gastro right now. My blood test came back neg but bx showed blunt villi.

Thanks!!

Rusla Enthusiast
Rusla
Posted

DH doesn't have to be a rash, get a skin biopsy. It also doesn't have to be on arms and legs mine is every so becoming on my face. Remember you don't have to have DH to be a Celiac but only Celiacs will get it and your villi is screaming that you are a Celiac.

Smitten Rookie
Smitten
Posted

Thanks so much for the info! Sometimes I do get the scaly patches on my eyelids....but not like my poor looking legs!

Rusla Enthusiast
Rusla
Posted

When I get it across my chin, under the lip and in the corners of my mouth, I look like a leper.

Smitten Rookie
Smitten
Posted

Do you get "flare ups" even on a gluten free diet?

Rusla Enthusiast
Rusla
Posted

Only when I have been glutened by accident. I have it starting in the corners of my mouth right now because, I know I was glutened with a small amount earlier. I am hoping it won't spread from there.

Right now I want someone to shoot me to end the pain.

jerseyangel Proficient
jerseyangel
Posted
Right now I want someone to shoot me to end the pain.

Rusla--You poor thing :( . Hope it dosen't last too long!

Rusla Enthusiast
Rusla
Posted

Thanks Patti, me too. It is a cross contamination issue and it is amazing how awful a few lousy grains can make some of us feel.

Smitten Rookie
Smitten
Posted

Hope it doesn't last! Get Better!

Parrot Newbie
Parrot
Posted
  • Author

That's amazing that after the gluten-free diet, one's body becomes so sensitive to just a bit of gluten- you'd think that'd be conclusive to these practitioners! Interesting that doctors are "practicing" medicine- I guess this condition backs that up big time!

I'm sorry you are suffering right now, Rusla- I hope that clears up quick! :)

  • 2 weeks later...
Parrot Newbie
Parrot
Posted
  • Author
Hi,

I'm new to the forum, and have not been diagnosed yet. After I "contracted" a rash in what my husband and I call the "Nether-regions" after going camping last summer at a state park, I have been suffering with an itchy rash since early September. It didn't show as a rash at first, but my skin there was extremely itchy, I scratched the heck out of it, and then it bled. It started to spread to my outer buttocks, then to my legs, and now the "rash" is fairly generalized, with my face, upper neck area, and the soles of my feet being unaffected. I saw the dermatologist in mid-November after my family doc said I had a staph infection on my skin, and prescribed triple-antibiotic ointment for my nostrils, and a low-dose steroid cream, both of which did nothing to clear up the problem. After seeing the dermatologist, I got a treatment for scabies and a skin-scrape (my idea), and she also prescribed hydroxizine, a steroid cream, and gave me a cortisone shot. The doc checked the skin scrape and said she didn't see any mites, but that the rash could be scabies. Just a few days later (even before using the scabies lotion that weekend), I started to clear up, and the itching was gone, as was the rash, by the end of November. So naturally, I thought must have indeed gotten scabies from the campground restroom. Anyway, by mid-January, the rash came back, is in full-force or even worse now (although I knock myself out with the hydroxizine every night), and now my husband has it also. He had a biopsy done, but he didn't ask them to check for IgG or A, or for DH, but they dx'd it as dermatitis, or just dry skin, and gave him the same steroid cream, pills and a shot. He got very little, if any relief.

I have an appt next week with the derm again, and will get the biopsy done, and hopefully blood work, as well. The point of my post is has anyone gotten just the skin condition with this, without any real GI problems? My rash started really as an itch, and then became a "rash" that appears much like the photos I've seen. I've had just one or two of the blisters, and they were on my heels. And has anyone gotten it simultaneously, or close to the same time, as another family member or spouse? My husband has some issues in the GI area, but I really don't that I'm aware of. I just turned 40, and do have profound inhaled allergies,and adult acne that is somewhat controlled by antibiotics and a topical rx.

I am kind of hoping this is DH/celiac, and not some non-specific dermatitis or ezcema, as I am tired of feeling worn out and itchy all the time! I am willing to go gluten-free if necessary, too. I know that will be a challenge, but I'm up to it! Thanks for any help anyone can give me!

  • 2 years later...
Mlisa Newbie
Mlisa
Posted

Hi, you sound like me, except for I have had alot of stomach problems and been thru tests, they say I have IBS or i am stressed, always something different! I also have a terribly itchy rash that I have had for about a year. The dr. also treated me for scabies, which didn't do a thing because i never had scabies!! this last test was a skin patch test that showed areaction to Cobalt, Formaldahyd, and Isothiazoinone, (I dont' really know what this is other then something found in conditioner, soap et.). I have a hard time believing all my problems are from contact dermatitis, when I read about Celiac disease I have alot of the symptoms including anemia, does any one have any ideas for me? I am waiting to get in to an allergist to get tested. Hopefully!

ravenwoodglass Mentor
ravenwoodglass
Posted
Hi, you sound like me, except for I have had alot of stomach problems and been thru tests, they say I have IBS or i am stressed, always something different! I also have a terribly itchy rash that I have had for about a year. The dr. also treated me for scabies, which didn't do a thing because i never had scabies!! this last test was a skin patch test that showed areaction to Cobalt, Formaldahyd, and Isothiazoinone, (I dont' really know what this is other then something found in conditioner, soap et.). I have a hard time believing all my problems are from contact dermatitis, when I read about Celiac disease I have alot of the symptoms including anemia, does any one have any ideas for me? I am waiting to get in to an allergist to get tested. Hopefully!

Your regular doctor can run a celiac panel, that should be your first step. If you have an active rash your dermatologist can biopsy the area NEXT to the rash to look for the antibodies. Here is a link to the National Institute of Health which will tell you how the biopsy needs to be done, if your doctor starts to biopsy the rash itself hand him a printout.

Open Original Shared Link

If the biopsy of the rash is positive then you definately have a diagnosis of celiac. If the blood tests are positive they may want to do an endoscopic exam and biopsies of your small intestine. With postive blood tests many doctors are now forgoing the endo but many still want to do it. After you have had all the testing you choose to do then would be the time to try the diet, no matter what the test results are. You have come to a great place for info and support feel free to ask any questions you need to and read as much as you can here and on the site's home page.

nora-n Rookie
nora-n
Posted

Just a warning about the steroids, they can cause intestinal biopsies for celiac to be negative. There have been some discussion about that here.

Almost all Dh patients also have intestinal damage (celiac) too.

nora

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