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

Diagnosing Dh Rash

ThisGalsGlutenFree

Recommended Posts

bartfull Rising Star
bartfull
Posted

OOPS! I forgot the links. Here they are. Make sure in the one from U of Chicago you click on the "read more" under each heading.

Open Original Shared Link

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

Celiac.com Sponsor (A8-M):


mitchgam Newbie
mitchgam
Posted

Mitch, Mitch, Mitch. I'm so sorry you have been mislead to the point you are suffering for it. Please, read these articles (plus the one I linked to earlier from the NIH). National Institutes of Health, The Mayo Clinic, and the University of Chicago know what they are talking about, and yet because your doctor who didn't even do a biopsy on you gives you false information he has not only mislead you about your condition, but I believe he has actually put your life in danger. Celiac will kill a person slowly, but a true allergy can kill a person right NOW.

 

Please, go get a biopsy. And get it from a GOOD dermatologist. SHOW him the links provided here so he will know how to do it right.

I have had biopsy's, 5 of them to be exact, none proved anything, nothing was found.

You are caught up in medical semantics. LIke the example I gave you about pulmonary disease.

The ONLY thing i can say for certain based on MULTIPLE doctors who I have seen is that i do NOT have a Wheat allergy (which also is a "Celiac disease")

bartfull Rising Star
bartfull
Posted

Mitch, if you have had five biopsies and nothing was found, why do you and your doctor believe you have DH? Your biospies were negative and your symptoms don't match the symptoms of DH.

However, your symptoms DO match the symptoms of an allergy. You claim to have a histamine reaction, and that is what happens when someone has an allergy! Open Original Shared Link

And please! Wheat allergy is NOT related in any way to celiac disease. Whatever gave you the idea that it is?

Please, read the links from the trye experts and then find another doctor. Go armed with the true scientific facts and get your allergy diagnosed. You need to be carrying an epi pen because your life is in danger. You KNOW that. You have ended up in the ER many times. You need to take charge of your health and take care of yourself.

mitchgam Newbie
mitchgam
Posted

Mitch, if you have had five biopsies and nothing was found, why do you and your doctor believe you have DH? Your biospies were negative and your symptoms don't match the symptoms of DH.

However, your symptoms DO match the symptoms of an allergy. You claim to have a histamine reaction, and that is what happens when someone has an allergy! Open Original Shared Link

And please! Wheat allergy is NOT related in any way to celiac disease. Whatever gave you the idea that it is?

Please, read the links from the trye experts and then find another doctor. Go armed with the true scientific facts and get your allergy diagnosed. You need to be carrying an epi pen because your life is in danger. You KNOW that. You have ended up in the ER many times. You need to take charge of your health and take care of yourself.

My skin lesions are typical DH like in any text book to start, they form trails sometimes, just like it says in the text books

The fact that Dapsone stops the reaction in the opinion of 3 different doctors is proof enough that I have DH

All confined the fact that due to how my body reacts to DH, giving me gluten so I can take a blood test is life threatening.

Remember I have been going through this for over 20 years now.

I have been to dozens of doctors and taken lots and lots of tests

While my reaction to DH is unusual it is not unique.

Wait until you are in your 60's and your immune system has weakened and you will find out for yourself.

bartfull Rising Star
bartfull
Posted

Why won't you read the links?

bartfull Rising Star
bartfull
Posted

There are many rashes that LOOK like DH. And dapsone is used for other skin problems besides DH. No reputable doctor would diagnose someone with DH just by looking at it, especially if five biopsies had negative results. You may have been to dozens of doctors but remember, a lot of us had to go through dozens of doctors before we got a correct diagnosis. There are a lot of doctors out there who really don't know anything about celiac (or much else for that matter.)

Oh, and by the way, I AM in my 60's.

ravenwoodglass Mentor
ravenwoodglass
Posted

I have had biopsy's, 5 of them to be exact, none proved anything, nothing was found.

You are caught up in medical semantics. LIke the example I gave you about pulmonary disease.

The ONLY thing i can say for certain based on MULTIPLE doctors who I have seen is that i do NOT have a Wheat allergy (which also is a "Celiac disease")

Celiac is not an allergy. Celiac is an autoimmune disease that can affect any organ in the body. An allergy causes a histamine reaction and celiac causes an antibody reaction. The histamine reaction can cause a rash along with swelling in the throat. The celiac autoimmune reaction also causes a rash but without the throat swelling that you are seeing. 

Do you perhaps have both a true allergy and celiac disease? Possibly. How were your biopsies done? Did they biopsy the lesion or the skin next to it? If they biopsied the lesions then of course they were negative. For a celiac biopsy they need to biopsy the intact skin next to the lesion. 

If you have celiac and are continuing to do celiac risky things like going to restaurants and ordering what 'looks to be gluten free' that is what is keeping your DH (if that is what it is) active. You are also causing damage to other organs from the antibodies coursing through your system. 

While it can take up to 2 years for the antibodies to leave the skin in someone with celiac they do eventually leave. You are still having reactions after 20 years which to me says if you are celiac ( and you are if you have DH) you are risking serious, unrepairable damage to organs like your brain, liver, etc. 

Please read the links others provided. Print the info out and share it with your doctors. 

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

Celiac.com Sponsor (A8-M):


  • 1 month later...
SMRI Collaborator
SMRI
Posted

I have had biopsy's, 5 of them to be exact, none proved anything, nothing was found.

You are caught up in medical semantics. LIke the example I gave you about pulmonary disease.

The ONLY thing i can say for certain based on MULTIPLE doctors who I have seen is that i do NOT have a Wheat allergy (which also is a "Celiac disease")

 

Celiac is NOT a wheat allergy.  Calling it a wheat allergy is like calling a pimple Ebola.  They are not even close to the same thing.  It sounds like you need a new doctor.  You are 100%, totally and completely wrong and so is your "doctor"....  Celiac is an autoimmune disorder, like Lupus, Diabetes, etc.  It has NOTHING to do with wheat allergies.  It causes totally and completely different symptoms and damage.  I'm not sure what "doctor" you are seeing but whomever it is, they know nothing about Celiac or Dh.

  • 4 weeks later...
Lobstah Rookie
Lobstah
Posted

I agree with SRMI and Raven.

These are two completely different things, and not knowing the difference is a sure sign that your doctor is no where near up to speed on Celiac.

Remember, doctors work for YOU.  If they're not up to the task, fire them and move on.  This is YOUR health, and it can be a critical issue.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      130,231
    • Most Online (within 30 mins)
      7,748
    NAA
    Newest Member
    NAA
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Betsy Crum
      Chest pain from celiac

      By Betsy Crum · Posted

      Thank you for your response! I have considered starting a food diary in the past, I suppose this is as good a time as any to start.  
    • Betsy Crum
      Chest pain from celiac

      By Betsy Crum · Posted

      I don't have health insurance so I have never had any testing done. I always thought if I stay away from gluten Ill be fine but I suppose that isn't enough anymore. I will look into getting an allergy test. Thank you for your input! 
    • trents
      Celiac Brand for Indian grocery

      By trents · Posted

      I remember reading an article summarizing testing done by Gluten Free Watchdog on several brands of dried lentils. They were all heavily cross contaminated with wheat and the commentary was to the effect that dried lentils in general were the most heavily cross contaminated product category in their testing data base. So, I would definitely not use any dried lentil product that was not tested to be Gluten Free (<20ppm of gluten) or Certified Gluten Free (<10ppm of gluten).
    • Scott Adams
      Celiac Brand for Indian grocery

      By Scott Adams · Posted

      While spices, lentils, beans and chickpeas are naturally gluten-free, the main concern with any brand is cross-contamination during processing and packaging. Since Suraj doesn't appear to certify their products as gluten-free or use dedicated gluten-free facilities, there is some risk of trace gluten exposure, especially with their corn flour which could be milled on shared equipment with gluten-containing grains. For absolute safety, I'd recommend looking for brands that are certified gluten-free by organizations like GFCO - good options include McCormick for spices, TruRoots or Bob's Red Mill for lentils and beans, and Anthony's for corn flour. That said, if you need to use Suraj products, be sure to carefully check labels for any wheat warnings, thoroughly rinse lentils and beans before cooking, and consider contacting the manufacturer directly to ask about their gluten testing protocols. Many in our community have found that investing in certified gluten-free brands gives them greater peace of mind and helps avoid accidental gluten exposure, especially for higher-risk items like flours.
    • Scott Adams
      Is it common to develop a wheat allergy in addition to Celiac Disease?

      By Scott Adams · Posted

      Dapsone, commonly prescribed for dermatitis herpetiformis (the itchy gluten-related skin condition), comes with several potential side effects that patients should monitor. The most frequent issues include blood-related problems like hemolytic anemia (especially in those with G6PD deficiency, which is more common in certain ethnic groups) and methemoglobinemia that can cause fatigue, shortness of breath, or bluish skin. Many patients also experience headaches, nausea, dizziness, or skin sensitivity to sunlight. While these effects are often manageable, there are rare but serious risks including dapsone hypersensitivity syndrome (with fever, rash and organ inflammation), liver problems, or severe anemia that require immediate medical attention. That's why doctors typically monitor blood counts and liver enzymes regularly during treatment. A crucial tip: proton pump inhibitors like omeprazole can interfere with dapsone's effectiveness, so discuss all medications with your doctor. If you develop fever, unexplained fatigue, yellowing skin/eyes, or a spreading rash while on dapsone, stop taking it and contact your healthcare provider right away. For celiac patients specifically, remember that strict gluten-free eating may eventually reduce or eliminate the need for dapsone to control dermatitis herpetiformis symptoms over time.
×
×
  • Create New...