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Do You Think I Have Dh?

Alona

By Alona
in Dermatitis Herpetiformis

Recommended Posts

Alona Newbie
Alona
Posted

Hi, I'm new, obviously and just looking for a little advice.

Here's a little bit about my family, my mother has celiac and my father has psoriusis, which are both autoimmune, I have Hushimoto's Thyroiditis, again autoimmute. I have been suffering from rashes since college (around the same time as the thyroid problems started so I'm told) and they have gotten slowly worse.

I get small blisters on the backs of my hands and all around my fingers, I currently have a rash on my forearms, which I discovered had a couple of tiny blisters there, then the small of my back and both legs below the knee. I have had it on the back of my neck, face, hips and shoulders before too. The only parts that really blister are my hands. They are itchy and even wake me up in the night sometimes, or I will wake up and realise I have scratched in my sleep and made it bleed.

Does this sound like DH to you guys? I've tried to do a lot of reading, but it doesn't sound "typical" from the articles.

I was tested for celiac about 4 years ago and it came back negative, but I read an article from a Doc. specializing in DH for 25 years, who said you can have DH and still have a negative Celiac blood test, that the relationships between the two are still unclear and not fully understood.

I have an appointment with my derm in 2 weeks and I called and told the nurse I want a biopsy and what for, she said she didn't know if the Doctor had ever done a biopsy for DH, she in fact, had never heard of it. This is making me nervous, what do I do if he won't do the biopsy? I'm sick of being told I have dry skin and eczema, use this useless cream on it 4 times a day and moisturize.

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NoGluGirl Contributor
NoGluGirl
Posted

Dear Alona,

I agree that Celiac is still very likely. Blood tests can be negative. In fact, more recent research has revealed that some of the most severe cases of Celiac tend to be seronegative. I spit up every formula as an infant, and had to be put on 2 percent milk. On top of that, I later developed Thyroid Disease and Anemia on top of my digestive problems. :( My gallbladder was removed when I was only 20 years old. :o

All of these are typical with Celiac. Despite this, I still had negative blood tests. I have Irish on both sides of the family, which puts me at a high risk. Then you factor in the history of stomach problems on both sides, and it does not look good. :unsure: I become violently ill if I ingest even a microscopic amount of gluten. Skin problems are typical with Celiac, and DH is certainly what yours sounds like. I have eczema, but no blistering. However, I have been wondering if some of this acne is DH instead, because it is so difficult to get rid of.

The skin biopsy is a good idea. That will tell you for sure. However, this doctor does not know about the condition. Finding a doctor who does know what DH is and how to do the biopsy is crucial for a diagnosis. Keep me posted! Good luck!

Sincerely,

NoGluGirl

P.S. I have a great beginner's list. If you want it, just PM me or ask and I will post it. :)

Alona Newbie
Alona
Posted
  • Author

Thank you for the reply :)

The problem I have is that I live in a small town, and with my insurance there are only 3 derms I can see in the area and they are all 60 miles away in another town. I called the other two and they are booked solid until June, I got into my derm because of another patient's cancilization. I suppose if this derm can't get it right I can go to the next biggest town 100 miles north to see a derm there. Eeeeggg, small town :P .

NoGluGirl Contributor
NoGluGirl
Posted

Dear Alona,

I know how you feel! I live in a small town as well. Getting the best medical treatment and diagnostics is difficult. I may have Lyme disease, and the closest doctor there is that treats it is pretty far away. I am sure even if the dermatologist does not know what DH is, you probably could look up some information on diagnostics on the web and find information for your appointment.

Sincerely,

NoGluGirl

Tigertail Newbie
Tigertail
Posted

Hi Alona, Yes, your Dr. can do a biopsy. That is how I was diagnosed. They just have to make sure they do the biopsy right. It took 3 trys and the 4th to confirm DH. I have been gluten-free for over a year now, but if I do get any gluten, even a crumb, I break out with blisters in many area's including inside my ears, my privates, my eyelids, my hands. You name it I can break out there. After that biopsy I had blood work done to confirm Celiac. Good luck to you and stick to your guns about the biopsy.

Lacey

NoGluGirl Contributor
NoGluGirl
Posted

Dear Lacey,

Can DH look like acne? My acne itches and burns until I scratch it and it bleeds sometimes. Then, my scalp started breaking out worse more recently. I have been gluten-free since August of 2006, but due to having to share a kitchen, I have been glutened periodically. I get violently ill upon ingesting a microscopic amount of the stuff, so I am OCD about avoiding it. Despite this, my parents refuse to go gluten-free.

Sincerely,

NoGluGirl

Tigertail Newbie
Tigertail
Posted

Mine does. My chin will look horrible at times, but as long as I stay gluten-free it looks fine. I am 48 and live with my husband and 20 year old daughter so I have my own area of the kitchen with stays gluten-free all the time. I have my own pots and pans and cooking utinsils. It is amazing how little gluten it takes for me to break out. I no longer eat out except at Outback which has a gluten-free menu and they are careful about contamination. It has been really hard but my skin looks and feels so much better.

Lacey

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trcn Apprentice
trcn
Posted

My acne cleared almost immediately upon going gluten-free (face, chest and back). That is how I know when I get glutened... in addition to itchy, itchy scalp and hair loss. The acne is terrible.

I figured it was gluten related right away.

Best,

Tracy

Alona Newbie
Alona
Posted
  • Author

That is actually quite interesting... I've been battling mild to moderate acne since college (never had any before) and I've tried pretty much everything. Most things like benzyl peroxide and salicylic acid really irritate my skin. I started washing my face with dandruff shampoo and that cleared my skin from the mouth up, only chin remained. I have had a really hard time getting my chin to clear, maybe this could be a cause. I'll keep a watchful eye on it. :P

NoGluGirl Contributor
NoGluGirl
Posted

Dear Lacey and Tracy,

I bet it is DH that I have as well. That would make perfect sense. I have been having a terrible time with this supposed acne, and sometimes it is painful. I will actually scratch the side of my face until it bleeds sometimes. It burns and itches that much!

OTC stuff just does not help much and although I have been gluten-free since August of 2006, due to living with my parents, I am kind of stuck here. They refuse to go gluten-free, and I go to ridiculous lengths to be sure none of my foods or cookware and utensils become contaminated. This confirms my suspicions. I know it can take a while for DH to clear up, even after being gluten-free. Something I read said it can take as long as 2 to 10 years in some cases.

Dear Alona,

I have the same thing going on. My acne actually seems to be irritated by those products. I do have oily skin, but the products irritate my skin a lot of the time. I am working on an herbal soap for it.

I have done some research on herbs and aloe vera juice was very soothing on my acne when I used it before. I got to thinking, if I could put all of these anti-acne herbals in a single soap, maybe it would do the trick! I will let you know how it goes!

Sincerely,

NoGluGirl

Alona Newbie
Alona
Posted
  • Author

Well, today is the day of my appointment and after going gluten free for 2 weeks I hadn't had an outbreak of blisters AT ALL, until *drum roll* this morning! My daughter turned 2, so yesterday I experimented by eating a big piece of cake and other wheat laden goodies. Purprise, purprise, this morning I woke with blisters all over my hands again. This way I can show my derm what it looks like when it's freshly broken out.

NoGluGirl Contributor
NoGluGirl
Posted

Dear Alona,

Ouch! I am glad you can at least show the dermatologist what it looks like. I hope they do the biopsy. This is important. Treating DH is not always easy, though. Let us know what happens! I cannot afford a biopsy, so I suppose I will just have to avoid touching and eating gluten obsessively as I have been doing. However, since additional intolerances can come along with Celiac, maybe I should experiment with going dairy and soy-free for a bit to see if there is any change.

Sincerely,

NoGluGirl

trcn Apprentice
trcn
Posted
Well, today is the day of my appointment and after going gluten free for 2 weeks I hadn't had an outbreak of blisters AT ALL, until *drum roll* this morning! My daughter turned 2, so yesterday I experimented by eating a big piece of cake and other wheat laden goodies. Purprise, purprise, this morning I woke with blisters all over my hands again. This way I can show my derm what it looks like when it's freshly broken out.

How did your appointment go??

Alona Newbie
Alona
Posted
  • Author

It went quite well, my derm is very nice. He was more than happy to do a biopsy (took 2 from my back, one of the rash and one of clear skin) and he said it would be about a week until the results come back. He said he has several patients with DH and said I had certainly done my homework. Though he said it was "rashy" and he still thought it was Eczema, even after I explained the part about the birthday cake and the sudden rashing on my hands. He said he wouldn't wish DH on anyone and didn't want to "doom me to that kind of diet" until the results came back. I just laughed I told him that at least I'll know how to go about preventing it, Eczema could be caused by anything!

My derm is quite cheap, he only charged $57 for the visit and $160 for the biopsy, which my insurance will cover. NoGluGirl, you could try to find a doctor to do the biopsy at a discount. Many will help uninsured patients by giving big discounts if they pay the bill off in one payment, you can try to call around and find a Doctor that will work with you.

Alona Newbie
Alona
Posted
  • Author

I received a call from my derm's nurse today and she said my test came back negative for DH, she also said it came back consistant with A-topic dermititis. I asked her about the birthday cake and how come my skin was looking better on a Gluten-free diet? She said that was just coinsidence. Now I'm not sure what to do, she said the Doctor would like to give me Kegalog shots, but I'm wondering if the test was messed up by taking the biopsy on rashy skin (since I couldn't see what he was doing as it was from my back).

NoGluGirl Contributor
NoGluGirl
Posted

Dear Alona,

That is a possibility. I do know of a dermatologist that removed my mother's moles before. He is the only one in town with a payment plan. Right now, DH is the least of my worries. The Lyme is a larger concern at the moment. My physical and the bloodwork alone are scary, but then factor in the nearest Lyme Literate Medical Doctor is 6 hours away, and that the first appointment costs $460, and that is really bad. I am so overwhelmed with all that could be causing my health woes right now!

Meanwhile, I am glad you got the results of your biopsy back so soon. Sorry that you did not get the diagnosis you were expecting. I was told I have eczema years ago. It is very problematic. Yeast and Lyme may cause it, and so many other things. Atopic dermatitis can result from various things. I do not see why gluten could not cause it, though. Any direct contact to skin would result in a rash. Here, check this link out: Open Original Shared Link and see if it helps.

Sincerely,

NoGluGirl

Alona Newbie
Alona
Posted
  • Author

Well, what makes me kind of upset is that I called the derm back and talked to the nurse and asked her if eating wheat could cause the atopic dermititis and recounted the cake and my reaction. She said "No, it has nothing to do with that." But I read on WebMD "Things that may make atopic dermatitis worse include... Certain foods, such as eggs, peanuts, milk wheat, or soy products."

So I guess it could still be caused by wheat and I will keep trying my gluten free diet.

I want to thank everyone who responded to my posts!

NoGluGirl Contributor
NoGluGirl
Posted

Dear Alona,

You are welcome for the replies! :) I do suspect the wheat has something to do with it. The nurse at the derm's office might not really know anything about it. I am allergic to food dyes, so I am always broken out. They put coloring in everything from ketchup to candy! Even my medications have dye! Stupid allergies! :angry:

Sincerely,

NoGluGirl

P.S. Maybe to do a test and see if you react to the gluten, apply a small amount of Aveeno lotion with plastic gloves to your leg or foot. Be sure to take the glove off with another glove on, and throw them away. Wash your hands very well. You do not want to accidentally ingest any. I think this will give you an answer. Also, chronic Candida tends to cause this reaction.

  • 2 weeks later...
Alona Newbie
Alona
Posted
  • Author

Just a super quick update, I ran my test. I ate wheat laden foods on Friday (whole wheat sandwiches, cookies, crackers... had a good old time). By Saterday I noticed a general increased itching, but resisted the erge to scratch anything. By Sunday I had a full blown blistery rash over the backs of my hands. Just to be sure I didn't expose my skin to any cleaning solvents or wash dishes or use latex gloves or anything that might bother my skin. I think next I will talk to an Allergist :lol: .

I took pictures before and after for show and tell.

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