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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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    • trents
      celiac, chocolate and alcohol

      By trents · Posted

      So, you had both and endoscopy with biopsy and a colonoscopy. That helps me understand what you were trying to communicate. No, no! It never occurred to me that you were trying to mislead me. It's just that we get a lot of posters on the forum who are misinformed about what celiac disease is and how it is diagnosed so I need some clarification from you which you were so gracious to give.
    • barb simkin
      celiac, chocolate and alcohol

      By barb simkin · Posted

      I had both the genetic genes for celiac.  My gastroenologist advised he also took a biopsy during one of my colonoscopies and endoscopy and advised I had celiac disease, along with stomach ulcers from my esophagus stomach down to my small bowel. I was shown the ulcers on the catscan and endoscopy report.  I also had polyps in 3 places throughout my large bowel. I was on a strict diet for months following.  I am sorry if I didnt define how I was diagnosed with celiac disease.  I am sorry if you think I was misleading you. I also had to pay $150.00 for the genetic testing.
    • trents
      celiac, chocolate and alcohol

      By trents · Posted

      So, I'm a little confused here. I understand you to say that you have not been officially diagnosed with celiac disease. Is this correct?  You have had genetic testing done to check for the potential for developing celiac disease and that was positive. Is this correct? I think you meant to type "gluten sensitivity" but you typed "gluten insensitivity". Just so we are clear about the terminology, there is celiac disease and there is NCGS (Non Celiac Gluten Sensitivity). They are not the same but they have overlapping symptoms. Celiac disease causes damage to the small bowel lining but NCGS does not. NCGS is often referred to in short form as gluten sensitivity. However, people often use the terms celiac disease and gluten sensitivity interchangeably so it can be unclear which disease they are referring to. Genetic testing cannot be used to diagnose celiac disease but it can be used to establish the potential to develop active celiac disease. About 40% of the general population has one or both of  the genes that have been most strongly connected with the potential to develop active celiac disease but only about 1% of the population actually develops active celiac disease. This makes the genetic test useful for ruling out celiac disease but not for diagnosing it. A colonoscopy cannot be used to diagnose celiac disease because it doesn't permit the scope to go up into the small bowel where celiac disease does the damage. They use an endoscopy ("upper GI) for checking the small bowel lining for celiac damage.
    • barb simkin
      celiac, chocolate and alcohol

      By barb simkin · Posted

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    • trents
      celiac, chocolate and alcohol

      By trents · Posted

      @barb simkin, are you sure the chocolate products are gluten-free and not "manufactured on equipment that also handles wheat products and tree nuts", i.e., cross-contamination? And what kind of alcoholic beverages are we talking about? Most beers are made from gluten-containing grains. Just checking.
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