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. - trents replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

    2. - cristiana replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

    3. 0

      Celiac Friendly Sports Camps - Academy Camps - Virtual Open House

    4. - lizzie42 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      Low iron and vitamin d

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

    • Total Members
      133,213
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • cristiana
    • trents
      Cristiana, that sounds like a great approach and I will be looking forward to the results. I am in the same boat as you. I don't experience overt symptoms with minor, cross contamination level exposures so I sometimes will indulge in those "processed on equipment that also processes wheat . . ." or items that don't specifically claim to be gluten free but do not list gluten containing grains in their ingredient list. But I always wonder if I am still experiencing sub acute inflammatory reactions. I haven't had any celiac antibody blood work done since my diagnosis almost 25 years ago so I don't really have any data to go by.   
    • cristiana
      I've been reflecting on this further. The lowest TTG I've ever managed was 4.5 (normal lab reading under 10).  Since then it has gone up to 10.   I am not happy with that.  I can only explain this by the fact that I am eating out more these days and that's where I'm being 'glutened', but such small amounts that I only occasionally react. I know some of it is also to do with eating products labelled 'may contain gluten' by mistake - which in the UK means it probably does! It stands to reason that as I am a coeliac any trace of gluten will cause a response in the gut.  My villi are healed and look healthy, but those lymphocytes are present because of the occasional trace amounts of gluten sneaking into my diet.   I am going to try not to eat out now until my next blood test in the autumn and read labels properly to avoid the may contain gluten products, and will then report back to see if it has helped!
    • lizzie42
      Hi, I posted before about my son's legs shaking after gluten. I did end up starting him on vit b and happily he actually started sleeping better and longer.  Back to my 4 year old. She had gone back to meltdowns, early wakes, and exhaustion. We tested everything again and her ferritin was lowish again (16) and vit d was low. After a couple weeks on supplements she is cheerful, sleeping better and looks better. The red rimmed eyes and dark circles are much better.   AND her Ttg was a 3!!!!!! So, we are crushing the gluten-free diet which is great. But WHY are her iron and vit d low if she's not getting any gluten????  She's on 30mg of iron per day and also a multivitamin and vit d supplement (per her dr). That helped her feel better quickly. But will she need supplements her whole life?? Or is there some other reason she's not absorbing iron? We eat very healthy with minimal processed food. Beef maybe 1x per week but plenty of other protein including eggs daily.  She also says her tummy hurts every single morning. That was before the iron (do not likely a side effect). Is that common with celiac? 
    • Scott Adams
      Celiac disease is the most likely cause, but here are articles about the other possible causes:    
×
×
  • 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.