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Still New To This...have Dh Questions....

shellbean

By shellbean
in Dermatitis Herpetiformis

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shellbean Apprentice
shellbean
Posted

My skin problems sounds a little different than everyone else but in a lot of ways the same. For starters, ever since I was born, I have had a million miniature "pimple" looking bumps ALL over my entire body. They NEVER disappear. Growing up the docs always said they thought it was eczema. One doc thought every single pore in my body was clogged (I don't know if I believe that one). The only time the bumps would give me problems was if I started to sweat, they would itch really bad and become red. It doesn't look like other pictures I've seen of eczema.

Now fast forward to adulthood......I have been gluten free for about 2.5 months (lots of contamination during that time too - I'm trying :)). I notice that after I've eaten something with gluten, on my inner arm at the elbow, I get a bunch of red dots. They don't really itch much at all and they are only a little raised. I also break out like crazy on the face. There I get what looks like big pimples but they don't go away for a couple weeks and they hurt when popped. They are mostly filled with what looks like water. But they don't itch either. (I get them in my scalp some too.) And I get red bumps on my chest and belly. These look different than the bumps I've lived with my whole life but they don't really look much like blisters. I don't have insurance right now so I have to see how much a skin biopsy will cost but in the meantime, I thought I would check here and see if this sounds like DH. Can you get a flare up by eating gluten or is it only when you use lotions, etc?

I haven't officially been diagnosed with celiac so I thought this would be an easier way to tell. What do they do to take the biopsy? Knives involved?? eewww! :o:unsure::blink::lol:

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Lillyth Explorer
Lillyth
Posted
My skin problems sounds a little different than everyone else but in a lot of ways the same. For starters, ever since I was born, I have had a million miniature "pimple" looking bumps ALL over my entire body. They NEVER disappear. Growing up the docs always said they thought it was eczema. One doc thought every single pore in my body was clogged (I don't know if I believe that one). The only time the bumps would give me problems was if I started to sweat, they would itch really bad and become red. It doesn't look like other pictures I've seen of eczema.

Now fast forward to adulthood......I have been gluten free for about 2.5 months (lots of contamination during that time too - I'm trying :)). I notice that after I've eaten something with gluten, on my inner arm at the elbow, I get a bunch of red dots. They don't really itch much at all and they are only a little raised. I also break out like crazy on the face. There I get what looks like big pimples but they don't go away for a couple weeks and they hurt when popped. They are mostly filled with what looks like water. But they don't itch either. (I get them in my scalp some too.) And I get red bumps on my chest and belly. These look different than the bumps I've lived with my whole life but they don't really look much like blisters. I don't have insurance right now so I have to see how much a skin biopsy will cost but in the meantime, I thought I would check here and see if this sounds like DH. Can you get a flare up by eating gluten or is it only when you use lotions, etc?

I haven't officially been diagnosed with celiac so I thought this would be an easier way to tell. What do they do to take the biopsy? Knives involved?? eewww! :o:unsure::blink::lol:

My insurance will pay for my biopsy, minus a $20 copay. Is it possible for you to get insurance? Is there a government progam that can help?

I am going in for the biopsy tomorrow. I'll let you know what's involved...

Hopefully no kinves... :D

During my bout with what I thinks is DH, but has been dx'd as exzema, I reacted to every single creme they gave me. It flared up with gluten & went away when I stopped eating gluten. Period. But it did take a few months. Now that I've finaly got the biopsy scheduled, it had dissappeared...

Go figure... :rolleyes:

Lillyth Explorer
Lillyth
Posted
My insurance will pay for my biopsy, minus a $20 copay. Is it possible for you to get insurance? Is there a government progam that can help?

I am going in for the biopsy tomorrow. I'll let you know what's involved...

Hopefully no kinves... :D

During my bout with what I thinks is DH, but has been dx'd as exzema, I reacted to every single creme they gave me. It flared up with gluten & went away when I stopped eating gluten. Period. But it did take a few months. Now that I've finaly got the biopsy scheduled, it had dissappeared...

Go figure... :rolleyes:

I have good news for you! Though there are knives involved, it didn't hurt at all! I should also mention that although they normally give you nocaine, I am DEATHLY allergic (as in in might die), so they couldn't give it to me. What they did do was inject me with some saline soultion -- IT DIDN'T HURT A BIT!!! NOT ONE BIT! (I am, BTW, one of thoese people who is very squemish about shots, and it was fine).

It's three hours later it still doesn't hurt. But then again, my rash (be it DH or not) is 99% gone, and I have heard others here report itching & pain afterwards. Maybe mine just wasn't so bad becuse the rash is mostly gone... Dunno...

shellbean Apprentice
shellbean
Posted
  • Author

Thanks for the advice. I'm one of those squemish types too! :) But not knowing for sure is aggrevating. It sure would answer alot if I went and had a biopsy done. I would be alot closer to knowing if I had celiac or not. I was alot like you regarding the reaction to the creams. Everything they gave me to use made me itch really bad and the bumps would swell and it made my skin so dry it cracked all over. Maybe it won't cost too much and I can just get it done w/o insurance. (I'm doing temp jobs now because I lost my other job because of all the sickness. That's why I don't have the insurance now.) But I'm glad your biopsy went well. I hope you receive good news! :)

sharikay Rookie
sharikay
Posted
Thanks for the advice. I'm one of those squemish types too! :) But not knowing for sure is aggrevating. It sure would answer alot if I went and had a biopsy done. I would be alot closer to knowing if I had celiac or not. I was alot like you regarding the reaction to the creams. Everything they gave me to use made me itch really bad and the bumps would swell and it made my skin so dry it cracked all over. Maybe it won't cost too much and I can just get it done w/o insurance. (I'm doing temp jobs now because I lost my other job because of all the sickness. That's why I don't have the insurance now.) But I'm glad your biopsy went well. I hope you receive good news! :)

Shellbean, I had the punch biopsy done over two months ago and not much to it as long as you can take the shots to numb the area. I get copies of my insurance payments and depending on where you live, who you see, etc. You may be looking at over $600 to find out if you have DH. It cannot tell you if you are celiac. That has to be determined from seeing a gastroenterologist where they do a biopsy of the small intestine if you are still on gluten, or by bloodwork if you are off gluten. The $600 included the doctors charge, the procedure and the lab work. A lotion that my dermatologist recommended really helped to ease the itching and it is called Sarna. It's around $10 a bottle at WalMart or any similar store if you don't have a WalMart. One thing I liked about the lotion is that it has NO steroids. Good luck with your determination. I recommend that you find some type of insurance as this condition may require further doctor visits and test.

jerseyangel Proficient
jerseyangel
Posted
You may be looking at over $600 to find out if you have DH. It cannot tell you if you are celiac. That has to be determined from seeing a gastroenterologist where they do a biopsy of the small intestine if you are still on gluten, or by bloodwork if you are off gluten.

Sharikay--I wanted to let you know that a diagnosis of DH is automaticly a diagnosis of Celiac Disease. One can not have DH and not have Celiac. (It is entirely possible to have Celiac and not have DH). It is also necessary to be on gluten for the Celiac blood panel :)

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      By trents · Posted

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      I’m so sorry you’re going through this—it sounds like you’ve been on a really challenging journey with your health. Your symptoms (stomach pains, bloating, low iron, joint pain, brain fog, etc.) do sound like they could be related to gluten sensitivity or another condition like non-celiac gluten sensitivity (NCGS). It’s interesting that your bloodwork hasn’t shown celiac markers, but the lymphocytosis in your duodenum could still point to some kind of immune response or irritation, even if it’s not classic celiac disease. The fact that your symptoms improved when you went gluten-free but returned when you reintroduced gluten (especially with the donut incident) is a pretty strong clue that gluten might be a trigger for you. It’s also worth noting that symptoms can be inconsistent, especially if your body is still healing or if there are other factors at play, like stress, cross-contamination, or other food intolerances. Do you have more info about your blood test results? Did they do a total IGA test as well? 
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