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):

Possible DH - undiagnosed, history included


Mags88

Recommended Posts

Mags88 Rookie

I saw a gastroenterologist for the first time yesterday, after being gluten free since November.  She said all of my symptoms (before November) were consistent with celiac.  She ordered the genetic blood test, and I’ll also have an endoscopy (in case there is still damage in small intestine and to rule out anything else going on) and a colonoscopy (dad passed away from colon cancer in 2015)) in a week and a half.  She explained and I am aware that I will probably not get an official diagnosis since I have been gluten free for months.  She said the only way to get an official diagnosis would be do to the gluten challenge, and she doesn’t suggest it because it would be bad for my health.  Anyway, this rash on my thigh has popped up and I’m wondering if it could possibly be DH.  I don’t want to go to dermatologist if it’s definitely not, thoughts?  I guess I should say even though I have been gluten-free since November, I have accidentally been glutened several times since then.  The most recent being about a week ago.  Thanks in advance for any input - this forum has been so helpful.

99483095-6011-40D9-80BC-DC17E90F1C23.webp


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



Celiac.com Sponsor (A8-M):



Scott Adams Grand Master

 Of course I’m not a doctor, but it certainly looks consistent with dermatitis herpetaformis. If you have health insurance consider going in for a skin biopsy to find out for sure. DH can last for weeks after eating even tiny amounts of gluten, so be sure to stay on you gluten free diet if you suspect gluten is the cause.

Posterboy Mentor
11 hours ago, Mags88 said:

I saw a gastroenterologist for the first time yesterday, after being gluten free since November.  She said all of my symptoms (before November) were consistent with celiac.  She ordered the genetic blood test, and I’ll also have an endoscopy (in case there is still damage in small intestine and to rule out anything else going on) and a colonoscopy (dad passed away from colon cancer in 2015)) in a week and a half.  She explained and I am aware that I will probably not get an official diagnosis since I have been gluten free for months.  She said the only way to get an official diagnosis would be do to the gluten challenge, and she doesn’t suggest it because it would be bad for my health.  Anyway, this rash on my thigh has popped up and I’m wondering if it could possibly be DH.  I don’t want to go to dermatologist if it’s definitely not, thoughts?  I guess I should say even though I have been gluten-free since November, I have accidentally been glutened several times since then.  The most recent being about a week ago.  Thanks in advance for any input - this forum has been so helpful.

99483095-6011-40D9-80BC-DC17E90F1C23.webp

Mags88,

You can't diagnose DH from a picture.

But here is a couple links that might help you.

https://www.mdedge.com/ccjm/article/114635/dermatology/skin-findings-associated-nutritional-deficiencies

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3179000/

Look into Phrynoderma as  a possible differential diagnosis....DH is extremely itchy.

Phrynoderma, meaning toad skin, is a type of follicular keratosis .

But PhD is not usually itchy and the shot of your body part is telling for  toad skin.

It is common on joints/knees elbows.

It usually responds to Vitamin A supplements aka Beta Carotene or Cod Liver Oil etc. and a good B-Complex.

see there Table 2 about it preferred locations.

  image.png.7c9afdff334928ce1cc43550adcc6f9f.png

Many Celiac's get low in their fat soluble Vitamins.  I get seasonally low in my Vitamin D levels as an example.

I hope this is helpful but it is not medical advise.

Posterboy,

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      134,036
    • Most Online (within 30 mins)
      10,442

    NCGS Celia
    Newest Member
    NCGS Celia
    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

    • trents
      Vitamin A is important for vision health. But be careful in supplementing it as it can lead to toxicity. Research it and consult with your medical professional. I do not have a definite answer to your original question but I was pursuing the possible cause of nutritional deficiency. But your visual deterioration could be unrelated to your celiac disease so don't rule that out.
    • Name
      Currently 19. Doctors think I was 1 year old when celiac started, but I wasn't diagnosed until 18, because they didn't do lab work on minors. I've been on a strict gluten-free diet for 14 months now. For example only certified gluten-free nuts and I've researched best brands a lot. I take B vitamins, vitamin D, vitamin C, Curcumin with black pepper, black sesame and green tea extract, magnesium, iron, and a little selenium and zinc, beef liver capsules. I recently had my vitamin and mineral levels retested and D is the only one I don't have enough of now. I had my eyes tested at 17 and they were good back then.
    • Scott Adams
      Not everyone with dermatitis herpetiformis needs to avoid iodine. DH is caused by gluten exposure, but iodine can worsen or trigger flares in a subset of people, especially when the rash is active or not yet controlled by a strict gluten-free diet. Some people react to iodized salt, seaweed, shellfish, or iodine supplements, while others tolerate normal dietary iodine without problems. In most cases, iodine restriction is individualized and often temporary, not a lifelong rule for everyone.
    • trents
      Questions: How old are you now? How long ago were you diagnosed as having celiac disease? Do you practice a strict gluten-free diet? Are you taking vitamin and mineral supplements to offset the nutrient malabsorption issues typical of celiac disease and if so, can you elaborate on what you are taking?
    • Name
      My vision was good as a teen and now has gotten worse in the last year. Could that be caused by my celiac disease?🤓😎🥸👓🕶️
×
×
  • Create New...