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

Not Yet Diagnosed But Gp 99% Sure I Have Dh & Coeliac


fairydust81

Recommended Posts

fairydust81 Rookie

I'm new here so still navigating my way around the boards. I have been suffering with my skin for 11 years (along with other symptoms) and have had many diagnoses including eczema, latex allergy etc.

My skin is at the worst it's ever been and the intense, painful itching is driving me mad. My GP looked at the rash and said he thinks it's linked with Coeliac but still isnt sure, I've had bloods taken today to test for wheat intolerance and coeliac antibodies.

Anyway I've attached a couple of piccies of my rash (as it is today) and when I have my skin biopsy done on the 14th July I'll be showing these photos to the dermatologist (as you can guarantee my skin will look less angry when I go), does this rash look like a typical DH type rash?:

Arm6.webp

Arm5.webp

Arm3.webp

Arm2.webp


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



Celiac.com Sponsor (A8-M):



itchy Rookie

I would say that it's a good bet that it is DH.

In your photos I think I see little blisters, perhaps with hard centres, and surrounded by blazing red.

And you say that your skin is painful. That's what I experienced too. (but my blisters were larger and less widespread). With it being that widespread and painful, it must be very unpleastant indeed. Is the rash most painful at a particular time of day? Many people with DH report that it is worst in the evening.

And if you also have gastrointestinal symptoms, that would support it being DH.

It would be tempting to go wheat free immediately, but of course that would likely negate the skin biopsy in a couple of weeks. In any case the only real proof that you can't tolerate gluten, whatever the name they give to the condition, is to stop eating gluten and see if it goes away. As many of us have experienced, tests for these conditions aren't very definitive. Lots of false negatives.

In my experience you have to be 99.99% wheat free, maybe 99.9999%, 98% isn't good enough. But you may find you are actually eating healthier, as one generally has to avoid manufactured foods as being either too risky, or (if gluten free) too expensive.

cahill Collaborator

As the above poster states ,It may be tempting to go gluten free now but try to wait until your testing is completed. Consider deciding now if you want to have an endoscopy done regardless of your test results.

Then as soon as your testing is done(no matter what the results are) go gluten free, it will help!!!

Also once gluten free try to watch your iodine intake,for me a high iodine intake exacerbates my DH

  • 1 month later...
schelbo Newbie

It looks like DH to me. Just like mine except more widespread.

  • 5 weeks later...
MerrillC1977 Apprentice

I don't know if what you have is DH...but WOW -- those pictures could be of *my* arms! It looks exactly like mine. I am still trying to figure out if I, too, have DH...so please do let me/us know what your doctor/biopsies find out. Many thanks!!

  • 1 year later...
Irishgirl76 Apprentice

I realize this is an old thread, but this is EXACTLY what my arms look like! If I knew how to upload pics, I would. The funny thing is, my rash never appeared until AFTER I was dx'd with Celiac and had been gluten-free for many months! It is just now starting to calm down after 4 months of flare-up.

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. - Rogol72 replied to HAUS's topic in Gluten-Free Foods, Products, Shopping & Medications
      8

      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

    2. - Scott Adams replied to HAUS's topic in Gluten-Free Foods, Products, Shopping & Medications
      8

      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

    3. - Scott Adams replied to deanna1ynne's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Inconclusive results

    4. - deanna1ynne replied to deanna1ynne's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Inconclusive results


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,441
    • Most Online (within 30 mins)
      7,748

    Linda Boxdorfer
    Newest Member
    Linda Boxdorfer
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Rogol72
      @HAUS, I was at an event in the UK a few years back. I remember ringing the restaurant ahead to inquire about the gluten free options. All I wanted was a few gluten free sandwiches, which they provided and they were delicious. The gluten-free bread they used was Warbutons white bread and I remember mentioning it on this site before. No harm in trying it once. It's fortified with Calcium and Iron. https://www.warburtonsglutenfree.com/warbs_products/white-loaf/ The only other gluten-free bread that I've come across that is fortified is Schar with Iodized salt, nothing else.
    • Scott Adams
      In the U.S., most regular wheat breads are required to be enriched with certain B-vitamins and iron, but gluten-free breads are not required to be. Since many gluten-free products are not enriched, we usually encourage people with celiac disease to consider a multivitamin.  In the early 1900s, refined white flour replaced whole grains, and people began developing serious vitamin-deficiency diseases: Beriberi → caused by a lack of thiamin (vitamin B1) Pellagra → caused by a lack of niacin (vitamin B3) Anemia → linked to low iron and lack of folate By the 1930s–40s, these problems were common in the U.S., especially in poorer regions. Public-health officials responded by requiring wheat flour and the breads made from it to be “enriched” with thiamin, riboflavin, niacin, and iron. Folic acid was added later (1998) to prevent neural-tube birth defects. Why gluten-free bread isn’t required to be enriched? The U.S. enrichment standards were written specifically for wheat flour. Gluten-free breads use rice, tapioca, corn, sorghum, etc.—so they fall outside that rule—but they probably should be for the same reason wheat products are.
    • Scott Adams
      Keep in mind that there are drawbacks to a formal diagnosis, for example more expensive life and private health insurance, as well as possibly needing to disclose it on job applications. Normally I am in favor of the formal diagnosis process, but if you've already figured out that you can't tolerate gluten and will likely stay gluten-free anyway, I wanted to at least mention the possible negative sides of having a formal diagnosis. While I understand wanting a formal diagnosis, it sounds like she will likely remain gluten-free either way, even if she should test negative for celiac disease (Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If her symptoms go away on a gluten-free diet, it would likely signal NCGS).        
    • JoJo0611
    • deanna1ynne
      Thank you all so much for your advice and thoughts. We ended up having another scope and more bloodwork last week. All serological markers continue to increase, and the doc who did the scope said there villous atrophy visible on the scope — but we just got the biopsy pathology report back, and all it says is, “Duodenal mucosa with patchy increased intraepithelial lymphocytes, preserved villous architecture, and patchy foveolar metaplasia,” which we are told is still inconclusive…  We will have her go gluten free again anyway, but how soon would you all test again, if at all? How valuable is an official dx in a situation like this?
×
×
  • 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.