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

Recommended Posts

shellbean Apprentice

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
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
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

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
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
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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,192
    • Most Online (within 30 mins)
      7,748

    MariaV
    Newest Member
    MariaV
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Ginger38
      So I recently had allergy testing for IGE antibodies in response to foods. My test results came back positive to corn, white potatoes, egg whites. Tomatoes, almonds and peanuts to name a few.  I have had obvious reactions to a few of these - particularly tomatoes and corn- both GI issues. I don’t really understand all this allergy versus celiac stuff. If the food allergies are mild do I have to avoid these foods entirely? I don’t know what I will eat if I can’t  have corn based gluten free products 
    • Kris2093u4
      Geography makes a difference.  I'm in the West and Trader Joe's gluten-free bread tastes great and is a better price than most gluten-free breads sold elsewhere in my area.  
    • JForman
      We have four children (7-14 yo), and our 7 year old was diagnosed with NCGS (though all Celiac labs were positive, her scope at 4 years old was negative so docs in the US won't call it celiac). We have started her on a Gluten Free diet after 3 years of major digestive issues and ruling out just about everything under the sun. Our home and kitchen and myself are all gluten-free. But I have not asked my husband/her dad or her other siblings to go completely gluten-free with us. They are at home, but not out of the home. This has led to situations when we are eating out where she has to consistently see others eating things she can't have and she has begun to say "Well, I can't have <fill in the blank>...stupid gluten."  How have you supported your gluten-free kiddos in the mental health space of this journey, especially young ones like her. I know it's hard for me as an adult sometimes to miss out, so I can't imagine being 7 and dealing with it! Any tips or ideas to help with this? 
    • Jane878
      By the time I was 5 I had my first auto0immune disorder, Migraine headaches, with auras to blind me, and vomiting, sensitivity to light and sound. I was 5 years old, and my stepfather would have pizza night, milling his own flour, making thick cheesy gluten pizza, that I would eat and the next day, I would have serious migraines, and my mother & stepfather did nothing about my medical problems. When I was 17 in my first year at college, I was diagnosed with my 2nd known auto-immune disorder, Meniere's disease. I was a elite athlete, a swimmer, and soccer player. And once again my parents didn't think anything of understanding why I had a disorder only older people get. Now after my mother passed from Alzheimer's disease she also suffered with living with gluten. She had a rash for 30 years that nobody could diagnose. She was itchy for 45 years total. My brother had a encapsulated virus explodes in his spleen and when this happened his entire intestines were covered with adhesions, scar tissue and he almost lost his life. He has 5 daughters, and when I finally was diagnosed after being pregnant and my body went into a cytokine storm, I lost my chance to have children, I ended up having Hashimoto's disease, Degenerative Disc disease, and my body started to shut down during my first trimester. I am 6ft tall and got down to 119lbs. My husband and I went to a special immunologist in Terrace, California. They took 17 vials of blood as we flew there for a day and returned home that evening. In 3 weeks, we had the answer, I have Celiac disease. Once this was known, only my father and husband made efforts to change their way of feeding me. At the family cabin, my stepfather & mother were more worried that I would ruin Thanksgiving Dinner. It wasn't until one of my cousins was diagnosed with Celiac disease. They finally looked into getting Gluten Free flour and taking measures to limit "gluten" in meals. He did nothing but ask for me to pay for my own food and wi-fi when I came to the cabin to stay after our house burned down. When he informed my mother, they proceeding to get into a physical fight and she ended up with a black eye. The is just more trauma for me. Sam had no interest in telling the truth about what he wanted. He lied to my mother that he had asked my husband if I could pay for "food" when he asked Geoffrey if I had money to pay for my wi-fi. My mother hates when he spends so much time on the computer so he lied and said I could pay for my own food. I will remind you I weighed 119lbs at this time. (At 6ft) that is a very sick looking person. Neither parent was worried about my weight, they just fought about how cheap my stepfather was. As my mother was diagnosed with Alzheimer's disease in 2014. He had her sign over the will to a trust and added his children. He had no testimonial capacity at the time, so she signed without proper papers. Making this Trust null and void. When I gave my brother my childhood home, my mother stated I would be getting an equal part of inheritance to the house on Race. It currently worth 2.0 million $. I got nothing, and my stepfather has since disowned me b/c of my claim and he knows that my mother would never have left it uneven between my biological brother and myself. She sat me and my husband down, as we lived at the Race Street house and treated and took care of it as our own. My brother took over b/c he was going through a horrific divorce and needed a home so he could get a better custody deal with his soon to be ex-wife who was a Assist DA for Denver. She used the girls against him, and he & I were the primary caregivers. We, Judd and I spent the most time with them pre the divorce. Once Judd moved into the house, he threw all of my mother, grandmother and my family heirlooms out to the Goodwill. Nobody told my mother about this as she was going through cancer treatment and had Alzheimer's disease in her mother and her sister. My stepfather and biological brother took advantage of this matter, as I called a "family council" that my brother just never could make it to at the last moment. All of the furnishing, kitchen ware, everything was in the house my brother just moved into. He had had 2 weddings, I chose to elope b/c my stepfather ruined my brother's first wedding by talking about his relationship with my brother in front of my dad and his entire family, insulting him and having my grandfather leave the ceremony. It was a disaster. My stepfather just plays dumb and blames my father for the slight. I was the only child not to have a wedding. So, my mother and stepfather never had to pay for a thing. My mother had had an agreement with my father he'd pay for college and all medical issues with their kids, myself and Judd. So truly my mother never had to pay for anything big for me in her entire life. I am looking for anyone that has had a similar story, where they grew up in a household that had a baker that regularly milled flour and ate gluten. What happened to you? DId you suffer from different auto-immune diseases b/c of living with a baker using "gluten" Please let me know. I have been looking into legal ways to get my stepfather to give me what my mother had promised, and he erased. Thank you for listening to my story. Jane Donnelly  
    • trents
      Possibly gluten withdrawal. Lot's of info on the internet about it. Somewhat controversial but apparently gluten plugs into the same neuro sensors as opiates do and some people get a similar type withdrawal as they do when quitting opiates. Another issue is that gluten-free facsimile flours are not fortified with vitamins and minerals as is wheat flour (in the U.S. at least) so when the switch is made to gluten-free facsimile foods, especially if a lot of processed gluten-free foods are being used as substitutes, vitamin and mineral deficiencies can result. There is also the possibility that she has picked up a virus or some but that is totally unrelated to going gluten-free.
×
×
  • Create New...