Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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:

Link to comment
Share on other sites
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:

Link to comment
Share on other sites
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...

Link to comment
Share on other sites
shellbean Apprentice
shellbean
  • Author
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! :)

Link to comment
Share on other sites
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.

Link to comment
Share on other sites
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 :)

Link to comment
Share on other sites

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      124,676
    • Most Online (within 30 mins)
      7,748
    LittleSuzysBBQ
    Newest Member
    LittleSuzysBBQ
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Seeking Advice about Fecal Transplant to Treat Celiac Disease

      By Scott Adams · Posted

      SIBO is a common secondary issue in people with untreated celiac disease. Articles in this category cover this: https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/bacterial-overgrowth-and-celiac-disease/
    • Scott Adams
      Extreme bloating even gluten-free

      By Scott Adams · Posted

      Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal, although some people may need to permanently eliminate certain foods. The two main ones to eliminate would be dairy/casein and oats.  
    • Hopeful1950
      Metabolic Meals delivery service

      By Hopeful1950 · Posted

      I am considering using the Metabolic Meals delivery service. They claim to be 100% gluten free. Has anybody used this service? If so, have you had any reactions? Is the food worth the price? Thanks, any input is appreciated
    • Wheatwacked
      Extreme bloating even gluten-free

      By Wheatwacked · Posted

      If you are looking for a good diet to follow to start your real recovery Dr Fuhrman's Eat to Live, 6 Week Plan is a good choice. Dr. Fuhrman’s 6-Week Nutritarian Diet Quick Start Dr Fuhrman is a Cardiologist who began the Nutritarian diet.  Helped me immensely with understanding nutrition.  Adapt it to GFD. If you can find them Drs Fuhrman, Amen, Davis and Hyman all had recurring annual specials on South Florida Public Service TV.
    • MaximilianKohler
      Seeking Advice about Fecal Transplant to Treat Celiac Disease

      By MaximilianKohler · Posted

      First of all, you should read this information about SIBO:  https://humanmicrobiome.info/sibo/ It's a very questionable diagnosis that leads many people to harm themselves with misguided treatments. Regarding celiac, I think it's very likely that FMT can treat it. Have a look through the related research: https://humanmicrobiome.info/intro/#celiac. You will see that multiple studies have shown that "gluten intolerance" is actually intolerance to various other "prebiotic" substances. FMT should be able to restore the microbes required to properly digest/process those prebiotic substances. The main issue I've come across is that stool donors who are good enough to treat or cure any condition are extremely rare. FYI, there is no such thing as "resetting your microbiome". Antibiotics are often the suggestion for this, but they do permanent damage that FMT may not even be able to reverse. FMT is still in the research phase, so I'd be very weary of any doctor claiming to specialize in FMT. Most of the clinical trials are using low-quality donors and getting poor results because of that.   The gut microbiome plays a major role in regulating the immune system: https://humanmicrobiome.info/immune-system/ Furthermore, the gut microbiome also regulates intestinal permeability. And in many cases, it's a permeable gut barrier that allows various particles and microbes to enter the bloodstream, which then triggers an immune reaction.
×
×
  • Create New...