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

Could My Physician Have Been Mistaken?

Woolygimp

By Woolygimp
in Dermatitis Herpetiformis

Recommended Posts

Woolygimp Contributor
Woolygimp
Posted

I've got red blistery bumps along my chest/shoulders and across my back and chest. When I was young, prior to actually start having the IgA response caused by Celiac at 17, I never had a problem with acne or blisters and this skin problem only started appearing afterwards. I went in for a biopsy with a dermatologist to check whether or not it was DH. The doctor that took the biopsy was just out of med school and was relatively inexperienced; he said that that it wasn't DH and instead prescribed me acne vulgaris medication.

When I look online for pictures of DH, it's odd that all of them look differently. My condition definitely resembles some of the pictures shown.

I was then diagnosed with Celiac a few months after that and this 'acne' is one of my biggest gauges for when I accidentally gluten myself. If I don't make mistakes they slowly fade away, but when I make one they flare up and actually develop instead blisters with pus.

Is there any chance this dermatologist made the wrong diagnosis? Before even taking the biopsy he seemed pretty adamant about it being acne. I'm definitely Celiac, but if it's just acne I probably need to use medication...even though a strict diet definitely makes it fade away...slowly.

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

Celiac.com Sponsor (A8-M):


ohsotired Enthusiast
ohsotired
Posted

How was the biopsy done? Directly on top of one of the bumps, or immediately next to it?

It's my understanding that in order for the biopsy to be accurate, it needs to be taken from the area right next to it rather than right on top of it.

Woolygimp Contributor
Woolygimp
Posted
  • Author
How was the biopsy done? Directly on top of one of the bumps, or immediately next to it?

It's my understanding that in order for the biopsy to be accurate, it needs to be taken from the area right next to it rather than right on top of it.

I couldn't tell. This was several months back and he didn't tell me anything as far as the procedure and I didn't know to request a side biopsy.

This would be what it most closely resembles.

Open Original Shared Link

Ursa Major Collaborator
Ursa Major
Posted

People have had their DH 'diagnosed' being all kinds of different skin problems. Of course the doctor could have been wrong, lots of dermatologists know next to nothing about DH (just like a lot of GI docs know precious little about celiac disease).

I believe that you have DH, period. And the only thing that keeps it in check is the gluten-free diet.

YoloGx Rookie
YoloGx
Posted

I have gotten acne even though I have celiac--and have had celiac since I was an infant. The acne for me comes from eating sugar, of which I am also very sensitive especially since I have to control the fungal/candida overgrowth pretty carefully since I have had too many antibiotics along the way since I wasn't told I had celiac until recently. If I am CC'd I often get canker sores amongst other symptoms, but not acne. Though eating gluten or getting CC does increase my tendency even more to having fungal overgrowth etc. I thus just avoid it now if its at all possible.

I fear that your doc may want to give you antibiotics to cure the acne. Honestly it doesn't work. What works is diet--avoiding sugar and bleached flours of whatever type, anything that goes to sugar quickly. Its good too sometimes to flush out your over burdened liver with things like dandelion root or silymarin caps and oregon grape root or yellow dock etc. Also eating lots of greens really helps and bulking agents like fresh ground up flax seed once or twice a day (1 tablespoon before being ground in a coffee grinder with 1/4 tsp apple pectin) mixed in plenty of water.

My understanding DH causes an itch as well as a bump etc. that doesn't easily go away even when one has gone off gluten. My mom's however always get worse when she goes off diet--plus the area around her eyes get red. It can take a year or two from what I hear to rid oneself of DH. Again I bet the dandelion and other liver cleansing herbs as well as lots of veggies etc. would help with that too. Just avoid ones like burdock that stimulate your immune system -- since that is the last thing we need given our over-active (auto) immune systems.

Bea

ravenwoodglass Mentor
ravenwoodglass
Posted

It does sound like DH. If it is you will find that it does clear up gluten free. You should see a decrease in the amount of NEW lesions pretty soon although it can take up to 3 months for the ones you have presently to heal completely. However the antibodies will remain in the skin for up to 2 years before they can be completely gotten rid of by your body. During this time even the smallest amount of CC will reactivate them. My first couple years gluten-free the lesions were the first indication I got into something gluteny, but they were not as bad as when on the full gluten diet. I have now been gluten-free going on 6 years. My skin is clear and my hair has grown back but the slightest amount of gluten will still cause hair loss and a very minor DH breakout, usually one lesion the size of a pencil eraser instead of the oozing sores that would cover one side of my face or legs or arms or back. They also show up last now instead of first. The antibodies have cleared my skin and it now takes a few days for them to build up enough to cause a lesion.

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. Scott Adams
      - Scott Adams replied to Jmartes71's topic in Dermatitis Herpetiformis
      1

      Natural remedies

      While it's always important to approach internal use of essential oils with caution and ideally under the guidance of a qualified professional, your experience highlights the potential of complementary approaches when traditional medicine falls short. Many in the community are also interested in the intersection of natural wellness and gluten-free living...
    2. Scott Adams
      - Scott Adams replied to miguel54b's topic in Related Issues & Disorders
      1

      Gluten and short-term memory.

      It's interesting how a single, clear moment—like struggling during a game—can suddenly connect all the dots and reveal the hidden impact of gluten exposure. Your experience with short-term memory fog is a very real and documented symptom for many individuals with gluten sensitivity, often occurring alongside the other issues you mentioned like mood disturbances, sl...
    3. Scott Adams
      - Scott Adams replied to Suze046's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Reintroduction of Gluten

      Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS. What you're describing is a very common and frustrating experience when reintroducing gluten after a period of avoidance, and your timeline is perfectly c...
    4. Scott Adams
      - Scott Adams replied to Rejoicephd's topic in Coping with Celiac Disease
      2

      Draft gluten-free ciders… can they be trusted ?

      Your suspicion is almost certainly correct, and you are wise to be cautious. Draft cider is a very common and often overlooked source of cross-contact because the same tap lines are frequently used for both beer and cider; unless a bar has a dedicated line for gluten-free beverages, which is rare, the cider will run through tubing that has previously contained...
    5. Scott Adams
      - Scott Adams replied to Mykidzz3's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      High Cost of Gluten-Free Foods

      Your post really highlights the financial and emotional struggle so many families face. You are not alone in feeling frustrated by the high cost of gluten-free specialty items and the frustrating waste when your daughter can't tolerate them. A great place to start is by focusing on naturally gluten-free whole foods that are often more affordable and...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,369
    • Most Online (within 30 mins)
      7,748
    Nick H.
    Newest Member
    Nick H.
    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

    • Scott Adams
      Natural remedies

      By Scott Adams · Posted

      While it's always important to approach internal use of essential oils with caution and ideally under the guidance of a qualified professional, your experience highlights the potential of complementary approaches when traditional medicine falls short. Many in the community are also interested in the intersection of natural wellness and gluten-free living, particularly for managing systemic inflammation and its various symptoms, so sharing your story is valuable. Your observation that it may also be helping with bloating is fascinating, as that could point to an overall reduction in inflammation. Thank you for sharing what is working for you!
    • Scott Adams
      Gluten and short-term memory.

      By Scott Adams · Posted

      It's interesting how a single, clear moment—like struggling during a game—can suddenly connect all the dots and reveal the hidden impact of gluten exposure. Your experience with short-term memory fog is a very real and documented symptom for many individuals with gluten sensitivity, often occurring alongside the other issues you mentioned like mood disturbances, sleep disruption, and digestive irregularity. It's a frustrating and often invisible effect that can make you feel unlike yourself, so that moment of clarity, though born from a tough dominoes match, is actually a powerful piece of self-knowledge. Identifying a specific culprit like that steak strip is a huge win, as it arms you with the information needed to avoid similar pitfalls in the future and protect your cognitive clarity. You are definitely not alone in experiencing this particular set of neurological and physical symptoms; it's a strong reminder of gluten's profound impact on the entire body, not just the digestive system. Supplementation may help you as well.  The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.      
    • Scott Adams
      Reintroduction of Gluten

      By Scott Adams · Posted

      Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS. What you're describing is a very common and frustrating experience when reintroducing gluten after a period of avoidance, and your timeline is perfectly consistent with a non-celiac gluten sensitivity. While a celiac reaction can be more immediate, a sensitivity reaction is often delayed, sometimes taking several days to manifest as your body's inflammatory response builds up; the fact that your symptoms returned a few days after reintroduction is a strong indicator that gluten is indeed the culprit, not a coincidence. Your doctor's advice to reintroduce it was necessary to confirm the diagnosis, as the initial negative celiac test and subsequent improvement on a gluten-free diet pointed strongly towards sensitivity. Many in this community have gone through this exact same process of elimination and challenging, and it's wise to reintroduce gently as you did. Given your clear reaction, the best course of action is likely to resume a strict gluten-free diet, as managing a sensitivity is the primary way to control those debilitating symptoms and allow your body to heal fully.
    • Scott Adams
      Draft gluten-free ciders… can they be trusted ?

      By Scott Adams · Posted

      Your suspicion is almost certainly correct, and you are wise to be cautious. Draft cider is a very common and often overlooked source of cross-contact because the same tap lines are frequently used for both beer and cider; unless a bar has a dedicated line for gluten-free beverages, which is rare, the cider will run through tubing that has previously contained gluten-containing beer, contaminating your drink. The fact that you didn't react at a clean brewery suggests they may have had more meticulous practices or separate lines, but this is the exception, not the rule. Many in the community have had identical experiences, leading them to strictly avoid draft cider and opt for bottled or canned versions, which are poured directly from their sealed container and bypass the contaminated tap system entirely. Switching to bottles or cans is the safest strategy, and your plan to do so is a smart move to protect your health. PS - here are some articles on the topic:    
    • Scott Adams
      High Cost of Gluten-Free Foods

      By Scott Adams · Posted

      Your post really highlights the financial and emotional struggle so many families face. You are not alone in feeling frustrated by the high cost of gluten-free specialty items and the frustrating waste when your daughter can't tolerate them. A great place to start is by focusing on naturally gluten-free whole foods that are often more affordable and less processed, like rice, potatoes, beans, lentils, corn, eggs, and frozen fruits and vegetables—these are nutritional powerhouses that can form the basis of her meals. For the specialty items like bread and pasta, see if your local stores carry smaller, single-serving packages or allow returns if a product causes a reaction, as some companies understand this challenge. Regarding vitamins, that is an excellent next step; please ask her doctor to prescribe a high-quality gluten-free multivitamin, as insurance will often cover prescribed vitamins, making them much more affordable. Finally, connecting with a local celiac support group online can be a treasure trove of location-specific advice for finding the best and most affordable products in your area, saving you both time and money on the trial-and-error process. 
×
×
  • Create New...