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

DH - The usual Suspect


Danzig

Recommended Posts

Danzig Newbie

Hello everyone :)

I've been reading this invaluable forum for a while now, but this is my first time posting.

 

I'm 35, and my first breakout happened on the 4th of July of last year. I thought it was allergy from being in the woods or some type of contact dermatitis. I had extreme burning on the back of my knees and elbows. They got very hot and eventually blistered. They completely healed the next day with no scarring.

 

Since then, I've been having on and off episodes of flaring on another spot; the left side where my thigh meet my buttocks. It gets raised, red, very hot, and the most distinctive symptom is a burning sting. Although it's sometimes itchy, however, it doesn't drive me crazy as everyone describes DH, it just burns, and it's always that same spot. It's a perfect oval shape now, and although it heals wI think a day or two, it's always dark. My spot flares when I eat gluten mostly, but I haven't established a consistent causality, sometimes it does while sometimes it doesn't.

 

My doctors suspected herpes at first, and those came back negative. Then I did the gluten blood test which was normal. Another doctor decided it was a fixed drug eruption, and gave me a steroid which has been helping a lot. However, I'm still getting the flare ups evens after I've cut all of my medicine, and again the flare ups come usually after eating gluten. He did a biobsy from the lesion site, and it didn't show anything except some type of contact dermatitis. Of course I read here that the biobsy should've  been taken from the surrounding area. Now they ordered a blood test for celiac that's only done in another state, and will take 2 weeks to get here.

 

I've had pizza yesterday, and withing 2 hours my spot was on fire, very lumpy and hot. The steroid immediately helped bring it down, and I've been fine since.

 

Does this sound consistent with DH? Any other suspects or suggestions?

 

Thanks a lot!

  • 3 weeks later...

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



Celiac.com Sponsor (A8-M):



GFinDC Veteran

Hi Danzig,

I am not sure if that fits DH or not.  I believe DH can start small and spread over time though.

ravenwoodglass Mentor

Have you been for the most part gluten free? if so your blood test may show a false negative. Be sure to let the doctors know if you haven't been eating gluten. If that is the case you will need to do a gluten challenge for testing. Steroids will also impact the blood testing. I don't know how long they would need to be stopped before testing. Perhaps someone else will advise on that.

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. - trents replied to Trish G's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Fiber Supplement

    2. - Trish G posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Fiber Supplement

    3. - kpf replied to kpf's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      ttg iga high (646 mg/dl) other results are normal

    4. - knitty kitty replied to Rejoicephd's topic in Related Issues & Disorders
      4

      Basic metabolic panel results - more flags


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,333
    • Most Online (within 30 mins)
      7,748

    jlcvt
    Newest Member
    jlcvt
    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

    • trents
      Welcome to the forum, @Trish G! "Gluten free" does not necessarily equate to "no gluten". According to FDA standards it actually means that a food product contains no more than 20ppm of gluten. This is safe for most celiacs but would not be for those who are on the more sensitive end of the spectrum. So, it would depend on the individual celiac and their level of sensitivity to minor amounts of gluten. That's the long and nuanced answer. The short answer is that it is a product derived from wheat and so you can be certain it will contain some residual amounts of gluten. No gluten removal process is 100% effective. So, to be absolutely certain, stay away from it. Have you tried chia seeds? Very high in fiber and quickly turns into a gel when added to water. Make sure you get seeds that are gluten free if you decide to try it.
    • Trish G
      I was taking Benefiber for my IBS-C before my celiac diagnosis. It does say Gluten Free but lists Wheat Dextrin on the label. I really dont like psyllium fiber, so is there anything else I can take or is the Benefiber really ok for someone with Celiac disease?  Thanks!!!
    • kpf
      Abdominal pain and an itchy stomach were the symptoms I asked to see a GI about. Now I’ve learned these other symptoms—that I have but attributed to other issues—could also be related to celiac disease:  fatigue joint pain canker sores numbness or tingling in hands or feet difficulty with coordination anemia headaches neutropenia I never dreamed in a million years she would consider celiac disease. It was a shock to me. It’s definitely not what I went to her for. 
    • knitty kitty
      @Rejoicephd, I'm not a doctor, but I experienced severe thiamine deficiency.  Your symptoms seem really familiar.  Malabsorption is a real thing that happens with Celiac.  A multivitamin is not going to prevent nor correct nutritional deficiencies.    Doctors do not recognize nutritional deficiency symptoms.  Gastrointestinal Beriberi is not recognized often.  Caused by thiamine deficiency, high dose thiamine supplements or IV administration with other vitamins, minerals and glucose under doctor's care is needed.   Thiamine deficiency is found in anemia.  Thiamine deficiency in the kidneys can result in electrolyte imbalances and cloudy urine.  Thiamine deficiency can cause high blood sugar which can cause cloudy urine.  Dehydration can cause cloudy urine.   I'm linking some PubMed articles.  You see if your symptoms match.  Discuss the possibility of Gastrointestinal Beriberi with one of your specialists soon!  Just to rule it out.  I'm very concerned.   I'm linking some PubMed articles.  You see if your symptoms match.   Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/#ref3 From Section 3: "In conclusion, TD limited to the gastrointestinal system may be an overlooked and underdiagnosed cause of the increasingly common gastrointestinal disorders encountered in modern medical settings. Left unattended, it may progress to wet or dry beriberi, most often observed as Wernicke encephalopathy.". . And... Refeeding Syndrome https://www.ncbi.nlm.nih.gov/books/NBK564513/
    • trents
      What are your symptoms? What has brought you to the point where you sought celiac disease testing?
×
×
  • 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.