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

Help identify if I have DH please.


Theo33

Recommended Posts

Theo33 Newbie

Hi, I’m a 32 y/o male and I developed extremely itchy bumps symmetrically on my body over the past 2 weeks in these places: elbows, outer thighs, knees, below the tail bone, neck/upper-back and a few in the pelvic area. Some of the bumps are semi-transparent and filled with clear liquid. Given these specific locations and specific nature, I was certain that it was DH. I consulted my doctor yesterday and she said she doesn’t think it’s DH, but rather a contact reaction like fragrance in my detergent and/or toiletries (I haven’t changed any of the products I use in the past several months). I have a nut  allergy and have had skin contact with nuts in the past and it is never symmetrical (usually local) and I have accidentally eaten nuts in the past and that reaction is typically swelling of the throat, hives allover the body and disappears within a few hours. Its never long-term like this. Here are some pics of my elbow.

Open Original Shared Link
Open Original Shared Link

Other symptoms I’ve been experiencing over the past year, that have yet to be solved by doctors, are hair easily falling out (significantly thinner hair shaft) and occasional pressure in my intestine on my left (often alleviated by burping). Also I’ve been having daily brain-fog/fatigue for the past 20 years. I’ve had a blood test for a gluten allergy that came up negative but I know that doesn’t rule out a gluten sensitivity. I’ve tried cutting out gluten last year for about a month and didn’t notice any improvement (but maybe it wasn’t cut out long enough?). So I’m trying again against my doctor’s opinion to see if at least this rash, the stomach pressure and hair symptoms change.

So given all of this info, do you think these images indicate DH?

I really appreciate any help.

Thanks!

Theo


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



Celiac.com Sponsor (A8-M):



squirmingitch Veteran

Theo it is so hard to tell from photos. However, dh does present bilaterally & is itchy as all get out. Elbows, knees are what most derms associate with dh although dh can & does present anywhere on the body. Derms fail to read past elbows & knees & thus fail to "get" that it can present anywhere. 

You need a new derm. You need to have a dh biopsy performed & you need it done correctly. That would be ADJACENT to an active lesion not on one. If you go back to this derm she will most likely still refuse & if she consents to do it I will lay odds she will do it WRONG. 

There is no blood test for a gluten allergy because celiac is NOT an allergy - it is an autoimmune disorder. With non celiac gluten intolerance you don't get dh. DH is specific to celiac disease.

60% of us with dh test negative on the celiac blood panel.

IF you were given a celiac blood test there remains the question of whether it was the FULL panel or not. Get a copy of the tests & post them here along with the reference ranges listed.

Your rash & the symptoms you describe sound enough like celiac that you really should get a dh biopsy. You MUST be eating gluten on a daily basis or you will get a false negative. 

Theo33 Newbie

Hi squirmingitch, thanks for the reply! Sorry I didn’t specify… My current family doctor said that it doesn’t look like DH. And it was my previous family doctor that conducted the celiac disease blood test, and came up negative (following their advice to continue eating gluten before the test to avoid false negative). I guess I have to find a way to get a biopsy and investigate the old blood test.

squirmingitch Veteran

I just can't see how any doctor thinks this is a contact reaction. 

Make sure you haven't had any oral steroids or steroid shots in the 2 months prior to a dh biopsy. 

And read thread after thread after thread on this section.

Unless you get really lucky with a derm, you're going to have to INSIST they do the biopsy & make sure you watch them so they don't take it on a lesion. If they start to do that stop them & tell them they're doing it wrong.

Yes, it would be great to get the old blood test.

squirmingitch Veteran

Oh, & celiacs who have dh generally don't have the GI issues that "regular" celiacs do & if we do, then we tend to have milder GI symptoms.

And when you cut gluten for a month last year -- no, that was probably not long enough but I bet you only thought you had cut out gluten. It's not as simple as only eating meat, veggies & fruit. There are cross contamination issues & I bet you didn't know how to prevent those.

Go to the coping section & read the Newbie 101 pinned at the top & follow all the links contained din that entire thread. That will tell you how to truly eat gluten free.

Theo33 Newbie

Thanks for the advice! I'll look into all of this info.

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. - Wheatwacked replied to GlutenFreeChef's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      12

      Blood Test for Celiac wheat type matters?

    2. - trents replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Seeking advice on potential gluten challenge

    3. - JudyLou posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Seeking advice on potential gluten challenge

    4. - marzian commented on Scott Adams's article in Diagnosis, Testing & Treatment
      5

      A Future Beyond the Gluten-Free Diet? Scientists Test a New Cell Therapy for Celiac Disease (+Video)

    5. - Jmartes71 posted a topic in Related Issues & Disorders
      0

      Medications

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

    • Total Members
      133,144
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Wheatwacked
      no argument. Never take the pills sold for Nuclear events, except in a nuclear event when instructed to by authorities.  Some of these go up to 130 milligrams per pill. 5000 times the strength of the dietary supplement.  130 times the safe upper limit.  130 mg = 130,000 mcg. Dietary supplements like Lugol's Solution and Liquid Iodine are 50 micrograms per drop.  It takes 20 drops to reach the safe upper limit. In the US the Safe upper limit is 1100 mcg.  In Europe 600 mcg and in Japan 3000 mcg ( 3 mg).
    • trents
      Welcome to the celiac.com community, @JudyLou! There are a couple of things you might consider to help you in your decision that would not require you to do a gluten challenge. The first, that is if you have not had this test run already, is to request a "total IGA" test to be run. One of the reasons that celiac blood antibody tests can be negative, apart from not having celiac disease, that is, is because of IGA deficiency. If a person is IGA deficient, they will not respond accurately to the celiac disease blood antibody tests (such as the commonly run TTG-IGA). The total IGA test is designed to check for IGA deficiency. The total IGA test is not a celiac antibody test so I wouldn't think that a gluten challenge is necessary. The second is to have genetic testing done to determine if you have the genetic potential to develop celiac disease. About 30-40% of  the general population have the genetic potential but only about 1% actually develop celiac disease. So, genetic testing cannot be used to diagnose celiac disease but it can be used to rule it out. Those who don't have the genetic potential but still have reaction to gluten would not be diagnosed with celiac disease but with NCGS (Non Celiac Gluten Sensitivity).  Another possibility is that you do have celiac disease but are in remission. We do see this but often it doesn't last.
    • JudyLou
      Hi there, I’m debating whether to consider a gluten challenge and I’m hoping someone here can help with that decision (so far, none of the doctors have been helpful). I have a history of breaking out in a horrible, burning/itchy somewhat blistering rash about every 8 years. This started when I was in my early 30’s and at that point it started at the ankles and went about to my knees. Every time I had the rash it would cover more of my body, so my arms and part of my torso were impacted as well, and it was always symmetrical. First I was told it was an allergic reaction to a bug bite. Next I was told it was eczema (after a biopsy of the lesion - not the skin near the lesion) and given a steroid injection (didn’t help). I took myself off of gluten about 3 weeks before seeing an allergist, just to see if it would help (it didn’t in that time period). He thought the rash looked like dermatitis herpetiformis and told me to eat some bread the night before my blood tests, which I did, and the tests came back negative. I’ve since learned from this forum that I needed to be eating gluten daily for at least a month in order to get an accurate test result. I’m grateful to the allergist as he found that 5 mg of doxepin daily will eliminate the rash within about 10 days (previously it lasted for months whether I was eating gluten or not). I have been gluten free for about 25 years as a precaution and recommendation from my doctor, and the pattern of breaking out every 8 years or so remains the same except once I broke out after just one year (was not glutened as far as I know), and now it’s been over 9 years. What’s confusing to me, is that there have been 3 times in the past 2 years when I’ve accidentally eaten gluten, and I haven’t had any reaction at all. Once someone made pancakes (they said they were gluten-free, they were not) and I ate several. I need to decide whether to do a gluten challenge and get another blood test. If I do, are these tests really accurate? I’m also concerned that I could damage my gut in that process if I do have celiac disease. My brother and cousin both had lymphoma so that’s a concern regarding a challenge as well, though there is a lot of cancer in various forms in my family so there may be no gluten connection there. Sorry for the ramble, I’m just doubting the need to remain gluten free if I don’t have any reaction to eating it and haven’t had a positive test (other than testing positive for one of the genes, though it sounds like that’s pretty common). I’d appreciate any thoughts or advice! 
    • Jmartes71
      Hello, just popped in my head to ask this question about medications and celiac? I have always had refurse reaction to meds since I can remember  of what little meds my body is able to tolerate. I was taking gabapentin 300mg for a week,  in past I believe 150? Any ways it amps me up not able to sleep, though very tired.However I did notice it helped with my bloating sibo belly.I hate that my body is that sensitive and medical doesn't seem to take seriously. Im STILL healing with my skin, eye, and now ms or meningioma ( will know in April  which)and dealing with this limbo nightmare. I did write my name, address ect on the reclamation but im not tech savvy and not sure if went through properly. I called my city representative in Stanislaus County and asked if theres a physical paper i can sign for proclamation for celiac and she had no clue about what I was saying, so I just said I'll go back on website. 
    • Scott Adams
      I'm not saying that some celiacs won't need it, but it should be done under a doctor's supervision because it can cause lots of problems in some people.
×
×
  • 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.