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

Biopsy result?

Jlewisrn

By Jlewisrn
in Dermatitis Herpetiformis

Recommended Posts

Jlewisrn Contributor
Jlewisrn
Posted

I had a biopsy on Friday but he biopsied the rash not the skin next to it. I know this is wrong when testing for DH but he said that's not what it is. Can anyone tell me if they had a biopsy of the rash before they knew what it was and what the pathology report said? He just called me and said it is a drug allergy. I only take one medication and I have been on it for several years. I also stopped taking it for several months and the rash didn't go away. How do they know this? Just based on what it looks like? Because the last biopsy said "atopic dermatitis" and she said it was eczema. So 2 different diagnosis same rash. Is one right? Us either of them right? 

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

Celiac.com Sponsor (A8-M):


apprehensiveengineer Community Regular
apprehensiveengineer
Posted

I've been told a lot of things over the years... from allergic dermatitis, to "sensitive skin" to ???? to acne. I have tried to no avail to get the skin biopsy, so take my statements with a grain of salt. I am fairly confident (as was the GI I saw recently) that I have DH as my outbreaks are always directly linked to GI distress from gluten ingestion, and come in discrete "batches" as opposed to continuously, as one might expect for the other conditions I've been purported to have.

Though there is some variability in the timeline, I will get GI issues within a couple of hours of eating something bad and a couple of days later the rash breaks through the top layer of my skin. It always hits the exact same regions, and I can usually tell where it's going to show up beforehand. It will take several weeks to stop bleeding/crusting and then a purple mark will appear on the healed skin for a few months. The treatments for the various other things I've been told it is are categorically useless or irritate it further. The only thing that has helped is a very strict version of the GFD (I essentially eat no processed foods) and avoidance of super high iodine foods (seafood).

I think in my case, the thing that has stumped all the doctors when I've suggested that it might be DH is that it isn't "textbook" in the sense that it isn't restricted to my stomach and elbows. Ironically, I have read a few dermatology textbooks and they all said that DH was highly variable in appearance and could appear almost anywhere, and that it commonly appears on extensor surfaces such as the elbows because these are high friction areas - the rash appears where the skin gets microdamaged and irritated. Most of them also cited locations such as the shoulders, back, buttocks and scalp as very common locations for the rash.

I guess the silver lining is that you don't "need" dapsone to fix the problem if it actually is DH, just a super strict GFD. But... I understand the frustration. Hope this helps?

 

Jmg Mentor
Jmg
Posted
On 8/8/2017 at 5:23 PM, Jlewisrn said:

So 2 different diagnosis same rash. Is one right? Us either of them right? 

I had two different diagnoses of a rash in two consecutive visits. I get the feeling its not an exact science!

 

 

Victoria1234 Experienced
Victoria1234
Posted
On 8/8/2017 at 0:23 PM, Jlewisrn said:

I had a biopsy on Friday but he biopsied the rash not the skin next to it. I know this is wrong when testing for DH but he said that's not what it is. Can anyone tell me if they had a biopsy of the rash before they knew what it was and what the pathology report said? He just called me and said it is a drug allergy. I only take one medication and I have been on it for several years. I also stopped taking it for several months and the rash didn't go away. How do they know this? Just based on what it looks like? Because the last biopsy said "atopic dermatitis" and she said it was eczema. So 2 different diagnosis same rash. Is one right? Us either of them right? 

I was biopsied in 2006 or 2007 the correct way and they called it dh. But no one told me anything about celiac then. It wasn't until I joined this board that, I think it was jmg, told me dh meant celiac diagnosis. 

Btw the rash presented on my elbow area and a bit down from that. First year or two of going gluten-free I knew I was sensitive to something as I got the itch, not the rash.

  • 1 month later...
Tina Morris Newbie
Tina Morris
Posted

I suffered with rashes on my elbows knees and has of spine for years. The itching was intense and made me totally miserable. Rash started as large blisters which eventually popped and scabbed over.. Doctor prescribed every cream known to man and none worked. In the end I saw a new doctor who knew immediately what it was. One visit to the hospital and biopsies on the rash area revealed DH. I am registered Coeliac and now never eat  gluten and I never have problems. 

 

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,339
    • Most Online (within 30 mins)
      7,748
    Skydawg
    Newest Member
    Skydawg
    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

    • trents
      Gluten exposure when trying to conceive

      By trents · Posted

      My reaction to a gluten bolus exposure is similar to yours, with 2-3 hours of severe abdominal cramps and intractable emesis followed by several hours of diarrhea. I don't necessarily equate that one large exposure to gluten with significant intestinal lining damage, however. I think it's just a violent reaction to a what the body perceives to be a somewhat toxic substance that I am no longer tolerant of because I have quit exposing myself to it regularly. It's just the body purging itself of it rather than an expression of significant damage. Before diagnosis, when I was consuming gluten daily, I had little to no GI distress. I was, for the most part, a "silent celiac". The damage to my small bowel lining didn't happen all at once but was slow and insidious, accumulating over a period of years. The last time I got a big shot of gluten was about three years ago when I got my wife's wheat biscuits mixed up with my gluten-free ones. There was this acute reaction after about two hours of ingestion as I described above. I felt washed out for a few days and fully recovered within a week or so.  Now, I'm a 74-year-old male. So, I'm not worried about being pregnant. And I don't want to contradict your physicians advice. But I just don't think you have done significant damage to your small bowel lining by one episode of significant gluten ingestion. I just don't think it works that way.
    • Skydawg
      Gluten exposure when trying to conceive

      By Skydawg · Posted

      Wondering about some thoughts on how long to wait to try to get pregnant after a gluten exposure?  I have been diagnosed for 10 years and have followed the diet strictly. I have been cross contaminated before, but have never had a full on gluten exposure. I went to a restaurant recently, and the waiter messed up and gave me regular bread and told me it was gluten free. 2 hours later I was throwing up for the whole evening. I have never had that kind of reaction before as I have never had such a big exposure. My husband and I were planning to start trying to get pregnant this month. My dr did blood work to check for electrolytes and white blood cells, but did not do a full nutritional panel. Most of my GI symptoms have resolved in the past 2 weeks, but I am definitely still dealing with brain fog, fatigue and headaches. My dr has recommended I wait 3 months before I start to try to get pregnant.   I have read else where about how long it can take for the intestine to fully heal, and the impacts gluten exposure can have on pregnancy. I guess I am really wondering if anyone has had a similar experience? How long does it take to heal after 1 exposure like that, after following the diet so well for 10 years? Is 3 months an okay amount of time to wait? Is there anything I can do in the meantime to reduce my symptoms? 
    • ShadowLoom
      Gluten Free Cannabis Edibles

      By ShadowLoom · Posted

      I’ve used tinctures and made my own edibles with gluten-free ingredients to stay safe. Dispensary staff don’t always know about gluten, so I double-check labels or just make my own.
    • Scott Adams
      Damage after 13 years gluten free

      By Scott Adams · Posted

      It's great to hear that there are some good doctors out there, and this is an example of why having a formal diagnosis can definitely be helpful.
    • RMJ
      Damage after 13 years gluten free

      By RMJ · Posted

      Update: I have a wonderful new gastroenterologist. She wants to be sure there’s nothing more serious, like refractory celiac, going on. She ordered various tests including some micronutrient tests that no one has ever ordered before.  I’m deficient in folate and zinc and starting supplements for both. I’m so glad I decided to go to a new GI!
×
×
  • Create New...