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Could this be DH?

lou84
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lou84 Newbie
lou84
Posted

I've been having strange health issues for the past year, flaresof strange neurological symptoms (jumpy vision, shaking, pins and needles) and also bouts of vomiting. I realised that I had reintroduced wheat after 6 years, because my digestive issues had cleared up after becoming vegan and I was able to eat it without diarrhea, pain, etc. My doctor recently did a blood test for coeliac after I mentioned this, which was negative, however I'd been vomiting for 3 weeks and I definitely haven't been eating as much wheat as required.

I've now got this horrendously itchy rash from my groin to lower stomach. I've had bouts of it in the past that took months of steroid treatment to go, the drs always just looked at it confused and said it must be eczema. I'm now wondering if it's dermatitis herpetiformis. It keeps me up at night and it looks almost like big welts/hives with tiny blisters in places. I've attached a picture.

I am so sick of going to the drs, I don't want to ask to get it biopsied if it's unlikely to be it, so any help much appreciated :)

20180819_105002-01-2016x980.webp

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cyclinglady Grand Master
cyclinglady
Posted

Since you are sick of doctors, consider the gluten-free diet.  Be sure to stay on it for at least six months.  

The DH?  Who knows?  DH visually mimics other rashes.  A biopsy is the sure way to a correct diagnosis.  You do have to be gluten for 6 to 12 weeks though.  

lou84 Newbie
lou84
Posted
  • Author

Thank you. Sure I can go gluten free but there is a difference between being coeliac and gluten free, with intolerances which is what I thought I had previously you don't have to be as careful because it doesn't leave lasting damage. My rash is currently getting worse and keeping me awake at night so looks like I'll have to get it looked at. It also seems I've only had one basic coeliac blood test rather than the whole panel so I'll be pushing for them all.

cyclinglady Grand Master
cyclinglady
Posted
(edited)

I would say you might be experiencing lasting damage!  Dealing with DH (which is celiac disease that manifests in the skin) is horrible!  A strict, super strict gluten-free diet is advised.  It can years for the antibodies to clear out of the skin and it can erupt (flare) even when not exposed to gluten during recovery.  

See if you can get the complete celiac panel (stay on gluten) and consider testing for a wheat allergy (different from celiac disease).  If an allergy,  antihistamines should relieve symptoms.  

Please read the DH section and check out SquirmingItch, ApprehesiveEngineer, and Ravenwoodglasses suggestions.  They are wise!  

Edited by cyclinglady
lou84 Newbie
lou84
Posted
  • Author

Thanks very much :) fingers crossed I get answers soon. I've been referred to a neurologist and am pretty worried. I'll definitely be sticking to a strict diet if it helps.

Another thing I forgot to mention is I can't seem to absorb b12 and folate well. I've read this is another sign. I've had to supplement sublingually

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  • Recent Activity

    1. Aretaeus Cappadocia
      - Aretaeus Cappadocia replied to Jmartes71's topic in Dermatitis Herpetiformis
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      Skin issues

      I'm not saying this is what you have, but your description reminds me of Morgellons, which are not very well understood. Here is a review from a reputable source. If it seems similar to your experience, you could raise this question with your Dr. https://my.clevelandclinic.org/health/diseases/morgellons-disease
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      @nancydrewandtheceliacclue, are you consuming dairy? Not sure if dairy is part of the carnivore diet.
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      Celiac flare years after diagnosis

      Hello Russ! Thank you so much for your reply. I have not had an antibody test done, ever, relating to gluten. Last year I had an allergy test done via blood draw (as my insurance wouldn't cover the skin test) but this was for pollen and grasses, not food. Even on the blood test I had extremely high levels of reactions to each allergen. Could this seasonal...
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      The sensitivity of people with coeliac disease varies greatly between individuals. The generally accepted as safe limit for most people is 10 milligrams per day. This equates to a piece of bread the size of a small pea. Some people report that they are more sensitive than this, but others can very occasionally eat a normal gluten containing meal without reacting...
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    • Aretaeus Cappadocia
      Skin issues

      By Aretaeus Cappadocia · Posted

      I'm not saying this is what you have, but your description reminds me of Morgellons, which are not very well understood. Here is a review from a reputable source. If it seems similar to your experience, you could raise this question with your Dr.  https://my.clevelandclinic.org/health/diseases/morgellons-disease
    • nancydrewandtheceliacclue
      Celiac flare years after diagnosis

      By nancydrewandtheceliacclue · Posted

      Hi Trent, no dairy. Other than good quality butter. I have been lactose free for years. No corn, sugar, even seasonings and spices. I don't eat out. I cook my own food.
    • trents
      Celiac flare years after diagnosis

      By trents · Posted

      @nancydrewandtheceliacclue, are you consuming dairy? Not sure if dairy is part of the carnivore diet.
    • nancydrewandtheceliacclue
      Celiac flare years after diagnosis

      By nancydrewandtheceliacclue · Posted

      Hello Russ! Thank you so much for your reply.  I have not had an antibody test done, ever, relating to gluten. Last year I had an allergy test done via blood draw (as my insurance wouldn't cover the skin test) but this was for pollen and grasses, not food. Even on the blood test I had extremely high levels of reactions to each allergen. Could this seasonal allergy inflammation be contributing to my celiac inflammation? I am so careful, there is no way I could ingest gluten. For example, couple of months ago I tried a cough drop that says it was gluten free. I checked ingredients, it seemed fine. But just taking one of those caused me to have nausea, vomiting, and the same extreme abdominal pain. Have you ever heard of anyone else having symptoms like mine after being diagnosed celiac and strictly gluten free? The last episode I had like this was yesterday, after I ate a certified gluten-free coconut macaroon with a little chocolate on it. I have eaten coconut and chocolate before with no issue,  so I didn't see how I could all of a sudden have such a strong response. 
    • Russ H
      Celiac flare years after diagnosis

      By Russ H · Posted

      The sensitivity of people with coeliac disease varies greatly between individuals. The generally accepted as safe limit for most people is 10 milligrams per day. This equates to a piece of bread the size of a small pea. Some people report that they are more sensitive than this, but others can very occasionally eat a normal gluten containing meal without reacting. I don't think that touching or throwing bread around would lead to you ingesting enough to cause a reaction. There are case reports of farmers with coeliac disease reacting to the dust from gluten-containing animal feed but they were inhaling large amounts of dust over a long period of time in barns. Perhaps you episodes are caused by a reaction to something other than gluten? Have you had your antibody levels checked to see whether you are still being exposed to gluten?
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