Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

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

shellbean

By shellbean
in Dermatitis Herpetiformis

Recommended Posts

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:

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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 :)

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. DebJ14
      - DebJ14 replied to Larzipan's topic in Related Issues & Disorders
      43

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      Say what you will about Peter Osborne, but he gave me back my life. Back in 2007 he was not promoting grain free, but came to that conclusion a few years later. While I did OK on gluten free, I really saw the greatest recovery when I went grain free. I notice a huge difference if I eat a gluten free food that contains any sort of grain. I think it is...
    2. Scott Adams
      0

      Gluten Transfer from Biodegradable Tableware: What a New Study Found and Why It Matters (+Video)

    3. Anne G
      - Anne G posted a topic in Related Issues & Disorders
      0

      celiac disease and braces

      Hello, My 17 yr old daughter was diagnosed with celiac disease 2 yrs ago. She does not have gum disease and no history of cavities. Her dentist is recommending braces for her lower teeth but I read it may worsen gum recession or possibly increase cavity risk which I know are already issues for patients with celiac. Has anyone here had braces and...
    4. trents
      - trents replied to HAUS's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      This is a common experience across the board with various brands of gluten-free bread products. Prices go up, size goes down. Removal of the egg component may be for the purpose of cost-cutting related to bird flu supply shortages or it may be catering to those with egg allergy/sensitivity, fairly common in the celiac community.
    5. HAUS
      - HAUS posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      Living with Coeliac Disease since birth, Bread has always been an issue, never too nice, small slices and always overpriced, But Sainsbury's Free From White Sliced Bread seemed to me to be an exception with it's large uniform 12 x 12cm slices that had the bounce, texture and taste of white bread even after toasting with no issue that it was also Milk Free...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,434
    • Most Online (within 30 mins)
      7,748
    Malia Ana
    Newest Member
    Malia Ana
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Anne G
      celiac disease and braces

      By Anne G · Posted

      Hello, My 17 yr old daughter was diagnosed with celiac disease 2 yrs ago. She does not have gum disease and no history of cavities. Her dentist is recommending braces for her lower teeth but I read it may worsen gum recession or possibly increase cavity risk which I know are already issues for patients with celiac. Has anyone here had braces and did it cause any problems or issues with gum recession?  Her dentist seemed oblivious that celiac patients are at higher risk of gum disease /cavities. Her bottom teeth are crooked but are pretty hidden even when she smiles. Thank you!!
    • trents
      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      By trents · Posted

      This is a common experience across the board with various brands of gluten-free bread products. Prices go up, size goes down. Removal of the egg component may be for the purpose of cost-cutting related to bird flu supply shortages or it may be catering to those with egg allergy/sensitivity, fairly common in the celiac community.
    • HAUS
      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      By HAUS · Posted

      Living with Coeliac Disease since birth, Bread has always been an issue, never too nice, small slices and always overpriced, But Sainsbury's Free From White Sliced Bread seemed to me to be an exception with it's large uniform 12 x 12cm slices that had the bounce, texture and taste of white bread even after toasting with no issue that it was also Milk Free. Unfortunately Sainsbury's have changed the recipe and have made it 'Egg Free' too and it has lost everything that made the original loaf so unique. Now the loaf is unevenly risen with 8 x 8cm slices at best, having lost it's bounce with the texture dense and cake like after toasting resembling nothing like White Bread anymore. Unsure as to why they have had to make it 'Egg Free' as the price is the same at £1.90 a loaf. Anyone else experiencing the same issue with it? - also any recommendations for White Bread that isn't prescription? / Tesco's / Asda's are ok but Sainsbury's was superior.
    • Mari
      My only proof

      By Mari · Posted

      Years  ago a friend and I drove north into Canada hoping to find a ski resort open in late spring,We were in my VW and found a small ski area near a small town and started up this gravelled road up a mountain. We  got about halfway up and got stuck in the mud. We tried everything we could think of but an hour later we were still stuck. Finally a pickup came down the road, laughed at our situation, then pulled the VW free of the mud. We followed him back to the ski area where where he started up the rope ski lift and we had an enjoyable hour of skiing and gave us a shot of aquavit  before we left.It was a great rescue.  In some ways this reminds me of your situation. You are waiting for a rescue and you have chosen medical practitioners to do it now or as soon as possible. As you have found out the med. experts have not learned how to help you. You face years of continuing to feel horrible, frustrated searching for your rescuer to save you. You can break away from from this pattern of thinking and you have begun breaking  away by using some herbs and supplements from doTerra. Now you can start trying some of the suggestions thatother Celiacs have written to your original posts.  You live with other people who eat gluten foods. Cross contamination is very possible. Are you sure that their food is completely separate from their food. It  is not only the gluten grains you need to avoid (wheat, barley, rye) but possibly oats, cows milk also. Whenever you fall back into that angry and frustrated way of thinking get up and walk around for a whild. You will learn ways to break that way of thinking about your problems.  Best wishes for your future. May you enjpy a better life.  
    • marion wheaton
      Are Lindt chocolate balls gluten free?

      By marion wheaton · Posted

      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.