Jump to content

  • 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):

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

  • 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. wellthatsfun
      - wellthatsfun posted a topic in Introduce Yourself / Share Stuff
      0

      my favourite human being ever

      i have mentioned my boyfriend before, particularly pertaining to how supportive and cautious he has been since my diagnosis in june 2025. constantly cooking amazing gluten free meals for me, reading labels like a hawk, keeping me safe. but a new challenger has approached recently. he has been hired at kfc. he's not just a front-of-house cashier or anything...
    2. Aretaeus Cappadocia
      - Aretaeus Cappadocia replied to JForman's topic in Coping with Celiac Disease
      8

      7yo struggling!

      Actually, human agriculture only started 10-12,000 years ago, while the Neanderthals were gone by 30,000 years ago (and greatly diminished long before then).
    3. Aretaeus Cappadocia
      - Aretaeus Cappadocia replied to JForman's topic in Coping with Celiac Disease
      8

      7yo struggling!

      In addition to the other advice offered, perhaps you could identify some good recipes for gluten-free treats that you could make at home with your child, and maybe make a little fuss over how good gluten-free treats are. I regularly make gluten-free banana bread with different recipes that use buckwheat, garbanzo bean, etc flours, gluten-free ginger snaps...
    4. Aretaeus Cappadocia
      - Aretaeus Cappadocia commented on Jefferson Adams's article in Origins of Celiac Disease
      8

      Celiac Disease Linked to Neanderthal Ancestry

      From the original post: "Some indicate negative effects, with putative links to various diseases as measured by genome-wide association studies (Sankararaman et al. 2014. Simonti et al. 2016)." ---> The links in the original post lead to a different article. I think these might be the correct links: "The landscape of Neandertal ancestry in present...
    5. Aretaeus Cappadocia
      - Aretaeus Cappadocia commented on Jefferson Adams's article in Diagnosis, Testing & Treatment
      4

      Scientists Make Major Advance in Autoimmune Disease Therapy

      The main use for leukapheresis is to mitigate (not cure) certain blood disorders, particulary certain types of blood cancer. It's kind of like "thinning the herd" when your body makes too many white blood cells. Doesn't fix the underlying problem, but it buys some time. The car-T people utilize the same technology to collect enough T cells (a type of...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      134,112
    • Most Online (within 30 mins)
      10,442
    greatsocalgal
    Newest Member
    greatsocalgal
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • wellthatsfun
      my favourite human being ever

      By wellthatsfun · Posted

      i have mentioned my boyfriend before, particularly pertaining to how supportive and cautious he has been since my diagnosis in june 2025. constantly cooking amazing gluten free meals for me, reading labels like a hawk, keeping me safe. but a new challenger has approached recently. he has been hired at kfc. he's not just a front-of-house cashier or anything, he is cooking in the back, getting covered in flour. obviously this is quite the hurdle for both of us to deal with. but this is the positive part. he changes out of his uniform after his shift and places his contaminated clothes in a plastic bag, and thoroughly washes his hands, arms and face in the bathroom. then said bag is placed in the boot of our car, far away from me. he doesn't touch me or set foot near me until he's clean and knows he won't contaminate  me or the car. and tonight, after his tiring shift cooking gluten chicken, he took it upon himself to make us an amazing orange and thyme roast chook with rice flour gravy for dinner. it was incredible. i'm just lost for words lol, and just wanted to make this post gushing about him because he truly is the love of my life. and to those out there who are trying for love, i know it's corny, but there truly are plenty of fish in the sea. put yourself out there. you are more worthy than you could ever know. it took me a long time to realise that myself, but with enough patience you can come to terms with loving yourself enough to feel as though you deserve love. don't give up, and please never forget to surround yourself with those that love and value you. much luck.
    • Aretaeus Cappadocia
      7yo struggling!

      By Aretaeus Cappadocia · Posted

      Actually, human agriculture only started 10-12,000 years ago, while the Neanderthals were gone by 30,000 years ago (and greatly diminished long before then).
    • Aretaeus Cappadocia
      7yo struggling!

      By Aretaeus Cappadocia · Posted

      In addition to the other advice offered, perhaps you could identify some good recipes for gluten-free treats that you could make at home with your child, and maybe make a little fuss over how good gluten-free treats are. I regularly make gluten-free banana bread with different recipes that use buckwheat, garbanzo bean, etc flours, gluten-free ginger snaps, etc. This might have the most impact if it's a novel treat unknown to the kids in a glutenated form. Best wishes.
    • Wheatwacked
      Symptoms Dismissed

      By Wheatwacked · Posted

      Chronic fatigue in the producer was the inspiration for the episode but I feel it touches on anyone that suffers and is dismissed as psycosomatic. The patient expressed my feelings elequently.  In episode 2 the doctor explains the problem well. I stopped all commercial milk protein like skim milk added to processed foods and in a few days there was a definate improvement in my  gut, bowel movements, discomfort etc. Still drinking several glasses of Pasture Fed grass fed milk with no negative effects.   Specifically, for myself Clonidine is the only medication that lowers my BP and the doctor did not renew it, insisting that I continue Losartan.  I think that she thinks I am abusing Clonidine and the reason the Losartan doesn't work is because I am non-compliant.  Absolutely not. Surprisingly after a few days withdrawal from the Clonidine my fasting blood sugar has gotten under control.  Fasting blood sugar near normal instead of over 160.  Last few days its been below 100.  I still need Glimiperide.  Without the clonidine my pulse rate is around 100 bpm, with it around 60.   Prescription of angiotensin receptor blockers in celiac disease is associated with persistent symptoms and surrogate markers of malabsorption.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12323722/ Angiotensin receptor blocker-associated enteropathy (ARB-e) is an increasingly recognised clinical entity with symptoms and histological findings identical to coeliac disease (celiac disease). There is evidence to suggest immune-mediated mucosal injury in ARB-e with a high prevalence of DQ2/DQ8; however, as IgA anti-tissue transglutaminase (anti-TTG) is usually negative   https://onlinelibrary.wiley.com/doi/full/10.1002/ueg2.12117 NEW research [Nov 2024] presented at the American College of Gastroenterology (ACG) Annual Scientific Meeting suggests that angiotensin receptor blockers (ARBs), a class of drugs commonly used to manage hypertension, may be associated with poorer outcomes in patients with coeliac disease. Findings indicated that patients taking ARBs had a higher likelihood of experiencing persistent symptoms and markers of poor small bowel healing, such as anaemia and iron deficiency.  https://www.emjreviews.com/en-us/amj/gastroenterology/news/angiotensin-receptor-blockers-may-worsen-coeliac-disease-outcomes/
    • mermaidluver22
      Some inflammation in ileum with celiac?

      By mermaidluver22 · Posted

      @BarcinoHi! I am so sorry abt your son but also relieved to know I am not alone! My ttg iga is still mildly elevated but going down. Last time we checked I had some small erosions in my ileum but recently got an MRE that showed no inflammation. Calpro 70. We are still in limbo but we are taking a conservative approach as well. Please keep me updated about his situation and outcomes! I always love to hear others opinions/experiences especially ibd specialists. 
×
×
  • Create New...