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

Weird Dh Stories


minton

Recommended Posts

minton Contributor

Okay, my first DH patch showed up in 6th grade a day after I saw a brown recluse looking spider on my leg. The patch was on the top of my foot and grew steadily and looked alot like the description of a brown recluse bite except the skin was not dying, just peeling off. So my first guess before diagnosis was brown recluse attacks.

When it spread to a patch on my inner calf, I panicked and exterminated my whole room thinking it was brown recluses.

Then the doctor got involved years later and said it was probably plaque psoriasis. I calmed down and tried to treat it and hide it. The treatments BURNED but I kept trying. I started crying during treatment applications. Then it spread to my face. I could barely eat from pain.My lips got it. Talk about embarrassing!

I had it that way, constantly spreading, for about 8 years before I met my new doctor. The gluten free diet cleared up and he said it was probably DH, not psoriasis. I didn't tell him about the spider panic. Looking back, I can laugh at myself. Even though the DH is starting up on my legs again, I can laugh and know what it is. No more room exterminations for me!

Anyone else have funny stories on their road to diagnosis of DH?


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



Celiac.com Sponsor (A8-M):



flourgirl Apprentice

Over the years I've had several really bad cases...and thought it was a sensitivity or allergy to poison Ivy......as my Dr.s believed, too. Before my diagnosis of Celiac, I had a really bad rash. I was sure it was poison Ivy but didn't know how I'd gotten it. I recognize the plant and avoid it. Nothing I did relieved the burn and itch. As it spread, I washed every tool I was using outside, threw out my clothes and shoes that I'd been wearing (even tho' I had washed them I thought some of the oils were remaining in my clothes). Then I realised that a neighbor down the road was burning brush over a period of many days, so I blamed him for burning Ivy in with the brush. Maybe the oils were traveling in the smoke.

By the time I had my endoscopy I was covered head to toe with rash. I knew by that time that it couldn't be poison Ivy because I had it on the bottom of my feet and on my hands. My feet were so bad (my job had me standing 12 hours a day) that they were peeling and bleeding. What fun!

ravenwoodglass Mentor

I had DH from about age 7 and it would cover my arms and legs and I also was told it was poison ivy. My Mom could never figure out how I would get into it in the wintertime and one doctor explained I had poison ivy 'in my blood'. A lot of bunk of course. He prescribed these incredibly painful shots with a serum that the nurses would have to heat in hot water to even get to go through the syringe (they don't use those particular shots anymore). I had those every year for ten years and when I would complain about the shot my Mom would threaten me with her mothers remedy. My Grandmother, in the early 1900's, used a scrub brush on my Mom's lesions and then would pour salt on them to dry them up. Can you imagine!!!!!!!

flourgirl Apprentice

I heard the old poison Ivy, sumac in the blood bit, too. I had it so bad one time it was everywhere. Doc at the time said there was nothing he could do just go home. It got a lot worse! It was years ago, though, and maybe they really did believe it got into your bloodstream to spread. I hope they don't still pass on such bogus info!

kenlove Rising Star

For 15 years I was told it was mango rash (The Hawaiian version of Poison Ivy!) and not to eat or work with mango and cashew trees. Needless to say the rash didnt go away. When I was finally diagnosed with celiac and dh confirmed, I was so happy I could eat mangos again that I wolfed down 5 big ones at one sitting!

Ken

I had DH from about age 7 and it would cover my arms and legs and I also was told it was poison ivy. My Mom could never figure out how I would get into it in the wintertime and one doctor explained I had poison ivy 'in my blood'. A lot of bunk of course. He prescribed these incredibly painful shots with a serum that the nurses would have to heat in hot water to even get to go through the syringe (they don't use those particular shots anymore). I had those every year for ten years and when I would complain about the shot my Mom would threaten me with her mothers remedy. My Grandmother, in the early 1900's, used a scrub brush on my Mom's lesions and then would pour salt on them to dry them up. Can you imagine!!!!!!!

Archived

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

  • 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. - Dr. Gunn replied to MicG's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Test interpretations

    2. - trents replied to MicG's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Test interpretations

    3. - Dr. Gunn replied to MicG's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Test interpretations

    4. - Aretaeus Cappadocia commented on Scott Adams's article in Spring 2026 Issue
      1

      How Social Media Algorithms Are Fueling Gluten Anxiety: TikTok, Reddit, and Instagram Trends

    5. - Scott Adams replied to MicG's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Test interpretations

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,659
    • Most Online (within 30 mins)
      7,748

    Dr. Gunn
    Newest Member
    Dr. Gunn
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • Dr. Gunn
      Exactly! Negative genetics can rule out celiac disease with close to 100% certainty. It takes tTg antibody testing and biopsy confirm the diagnosis in a genetically susceptible individual. 
    • trents
      What Dr. Gunn states is essentially true. It is a rule out measure. But be aware that to possess either of the two primary genes that have been identified with celiac disease (or both) doesn't necessarily mean that you have or will develop celiac disease. Almost 40% of the general population carries one or both but only about 1% of the general population will develop active celiac disease. It remains latent until triggered by some stress event which may or may not occur. So, there is a genetic component to celiac disease but there is also an epigenetic component. 
    • Dr. Gunn
      Have you had celiac genetic risk testing? A celiac genetic test is accurate with or without gluten in your diet. If you don't carry the celiac risk genes you can effectively rule out celiac disease for life. 
    • Scott Adams
      Based on those results alone, it’s not possible to say you have celiac disease. The test that is usually most specific for celiac, tTG-IgA, is negative in your results, and the endomysial antibody (EMA) is also negative, which generally argues against active celiac disease. However, your deamidated gliadin IgA is elevated, and your total IgA level is also high, which can sometimes affect how the other antibody tests behave. Another important factor is that you were reducing gluten before the test, which can lower antibody levels and make the results less reliable. Because of that, many doctors recommend a gluten challenge (eating gluten regularly for several weeks) before repeating blood tests or considering an endoscopy if symptoms and labs raise concern. It would be best to review these results with a gastroenterologist, who can interpret them in context and decide whether further testing is needed.
    • trents
      Since you compromised the validity of the antibody testing by experimenting with gluten withdrawal ahead of the testing, you are faced with two options: 1. Reintroduce significant amounts of gluten into your diet for a period of weeks, i.e., undertake a "gluten challenge". The most recent guidelines are the daily consumption of at least 10g of gluten (about the amount found in 4-6 slices of wheat-based bread) for at least two weeks leading up to the day of testing. Note: I would certainly give it more than two weeks to be sure. 2. Be willing to live with the ambiguity of not knowing whether gluten causes you problems because you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). There is no test for NCGS. Celiac disease must first be ruled out and we have tests for it. Celiac disease has an autoimmune base. NCGS does not. GI symptoms overlap. In the early stages of celiac disease, other body systems may not be showing stress or damage so, symptomatically, it would be difficult to distinguish between celiac disease and NCGS. Both conditions require elimination of gluten from the diet for symptom relief. Some experts feel that NCGS can be a precursor to celiac disease.
×
×
  • 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.