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

Dermatitis Herpetiformis


kiwi kate

Recommended Posts

kiwi kate Newbie

hi i have recently moved to the US and ever since have been having a lot of trouble! it first started with feeling so low of energy i could hardly do my job! every day was a task and i found myself breaking down on several occasions thinking life isnt supposed to be this hard.. it never was before! then i decided to go on a health kick thinking it was just the change of food.. i was eating mostly salads, fruit and meat (gluten free by accident) and when i tried to cheat one night.. with a beer, burger and cake wooooowe did i pay for it. i was doubled over in pain and could hardly move. from then my symptoms have only gotten more extensive. blood in my stool, itchy all over, foggy mind and hard to concentrate, gas and diarrhea, tingly hands and feet and once even vomiting. i have attempted a gluten free diet for about 2 months now but i must say not very successfully, not often going more than 2 days without a small amount of gluten. i am wanting to get a test done in 2 weeks and have just developed this rash on my bottom. i am almost hoping it is this celiac rash as it would just be a relief to be diagnosed! i know its a horrible disease to have but at least i would know exactly what i have what to do and commit to.

the question is does anyone know if the fact that i have just developed this rash mean my test would be positive?? or have is it still a possibility i haven't been ingesting enough gluten recently to get a definitive test result??


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



Celiac.com Sponsor (A8-M):



pricklypear1971 Community Regular

It's really hard to know anything when it comes to DH testing.

The rashes vary in appearance greatly, sensitivity to gluten varies, frequency of breakouts varies....it's all over the place.

A new rash is better to biopsy than an old one, one with clear edges is best, and if you are actively eating gluten its said to be better for testing (UK sources I believe).

I noticed my rash got worse before better then at apx. 5 months gluten-free the outbreak I had was dramatically less severe (assume iga levels fell in my skin) - the outbreak was so mild I didn't bother calling my derm for a biopsy.

A biopsy at 2 months gluten-free would have been in my rash's "raging glory".

There's no harm in trying, especially if you're trying for a dx.

Other skin diseases are associated with gluten - psoriasis, eczema, etc. If it isn't DH (or doesn't get biopsied as DH) don't get discouraged. If going gluten-free makes your symptoms go away, then your body needs to go gluten-free.

ciamarie Rookie

the question is does anyone know if the fact that i have just developed this rash mean my test would be positive?? or have is it still a possibility i haven't been ingesting enough gluten recently to get a definitive test result??

I believe it depends on the type of test. If the rash you have is DH, then an endoscopy may not yield a 'positive'. There's also one of the blood tests (IgA I think?) that will only be positive if you have total villous atrophy. But if you have DH, then there are some of the other antibody tests that may be positive, since having the rash would indicate there is some antibody activity. Or, are you having the DH biopsied? That's another possible test, if so then the biopsy needs to be on a clear section of skin next to a blister.

Knowing what kind of test or tests would probably make it easier for those who are more expert to give their opinion.

eatmeat4good Enthusiast

I think your test was pretty conclusive (the dietary restriction and challenge), but people with DH often test negative on blood, intestinal biopsy and skin biopsy. Yet they tend to be extremely sensitive to even traces of gluten or cross contamination. You can try to get tested but your body is telling you loud and clear...just in case the tests are negative. You can still be Celiac even without a Dr.'s diagnosis or positive tests. And you can still eat gluten free if you want to. If your symptoms go away...that is what it is. The DH rash is sensitive to iodine for some people. If yours is, you can follow the Thyca.com low iodine diet to help speed healing.

From reading many many posts, not many dermatologists will agree to do the biopsy, and if they do agree, they do not know how to do it. Just to let you know.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,185
    • Most Online (within 30 mins)
      7,748

    wmkoehler
    Newest Member
    wmkoehler
    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

    • 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.
    • Sheila mellors
      I asked about the new fruit and nut one and the Dietician said yes I could eat it safely. Hooe this helps
×
×
  • Create New...