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

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
      131,948
    • Most Online (within 30 mins)
      7,748
    Stephanie94
    Newest Member
    Stephanie94
    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)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • Jacki Espo
      Covid caused reoccurrence of DH without eating gluten

      By Jacki Espo · Posted

      This happened to me as well. What’s weirder is that within a couple hours of taking paxlovid it subsided. I thought maybe I got glutened but after reading your post not so sure. 
    • Mari
      New Celiac Mama in My 30s

      By Mari · Posted

      Hi Tiffany. Thank you for writing your dituation and  circumstancesin such detail and so well writte, too. I particularly noticed what you wrote about brain for and feeling like your brain is swelling and I know from my own experiences that's how it feel and your brain really does swell and you get migraines.    Way back when I was in my 20s I read a book by 2 MD allergist and they described their patient who came in complaining that her brain, inside her cranium, was swelling  and it happened when she smelled a certain chemical she used in her home. She kept coming back and insisting her brain actually swelled in her head. The Drs couldn't explain this problem so they, with her permission, performed an operation where they made a small opening through her cranium, exposed her to the chemical then watched as she brain did swell into the opening. The DRs were amazed but then were able to advise her to avoid chemicals that made her brain swell. I remember that because I occasionally had brain fog then but it was not a serious problem. I also realized that I was becoming more sensitive to chemicals I used in my work in medical laboratories. By my mid forties the brain fog and chemicals forced me to leave my  profession and move to a rural area with little pollution. I did not have migraines. I was told a little later that I had a more porous blood brain barrier than other people. Chemicals in the air would go up into my sinused and leak through the blood brain barrier into my brain. We have 2 arteries  in our neck that carry blood with the nutrients and oxygen into the brain. To remove the fluids and used blood from the brain there are only capillaries and no large veins to carry it away so all those fluids ooze out much more slowly than they came in and since the small capillaries can't take care of extra fluid it results in swelling in the face, especially around the eyes. My blood flow into my brain is different from most other people as I have an arterial ischema, adefectiveartery on one side.   I have to go forward about 20 or more years when I learned that I had glaucoma, an eye problem that causes blindness and more years until I learned I had celiac disease.  The eye Dr described my glaucoma as a very slow loss of vision that I wouldn't  notice until had noticeable loss of sight.  I could have my eye pressure checked regularly or it would be best to have the cataracts removed from both eyes. I kept putting off the surgery then just overnight lost most of the vision in my left eye. I thought at the I had been exposed to some chemical and found out a little later the person who livedbehind me was using some chemicals to build kayaks in a shed behind my house. I did not realize the signifance  of this until I started having appointments with a Dr. in a new building. New buildings give me brain fog, loss of balance and other problems I know about this time I experienced visual disturbances very similar to those experienced by people with migraines. I looked further online and read that people with glaucoma can suffer rapid loss of sight if they have silent migraines (no headache). The remedy for migraines is to identify and avoid the triggers. I already know most of my triggers - aromatic chemicals, some cleaning materials, gasoline and exhaust and mold toxins. I am very careful about using cleaning agents using mostly borax and baking powder. Anything that has any fragrance or smell I avoid. There is one brand of dishwashing detergent that I can use and several brands of  scouring powder. I hope you find some of this helpful and useful. I have not seen any evidence that Celiac Disease is involved with migraines or glaucoma. Please come back if you have questions or if what I wrote doesn't make senseto you. We sometimes haveto learn by experience and finding out why we have some problems. Take care.       The report did not mention migraines. 
    • Mari
      My only proof

      By Mari · Posted

      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but another, tissue transaminasewas normal. Itdid show I was  allergic to cows milk and I think hot peppers. I immediately went gluten free but did not go in for an endoscopy. I found an online lab online that would do the test to show if I had a main celiac gene (enterolab.com). The report came back that I had inherited a main celiac gene, DQ8, from one parent and a D!6 from the other parent. That combination is knows to sym[tons of celiac worse than just inheriting one main celiac gene. With my version of celiac disease I was mostly constipated but after going gluten-free I would have diarrhea the few times I was glutened either by cross contamination or eating some food containing gluten. I have stayed gluten-free for almost 20 years now and knew within a few days that it was right for me although my recovery has been slow.   When I go to see a  medical provide and tell them I have celiacs they don't believe me. The same when I tell them that I carry a main celiac gene, the DQ8. It is only when I tell them that I get diarrhea after eating gluten that they realize that I might have celiac disease. Then they will order th Vitamin B12 and D3 that I need to monitor as my B12 levels can go down very fast if I'm not taking enough of it. Medical providers haven't been much help in my recovery. They are not well trained in this problem. I really hope this helps ypu. Take care.      
    • knitty kitty
      Does anyone here also have Afib

      By knitty kitty · Posted

      Fascinating.
    • DebJ14
      Does anyone here also have Afib

      By DebJ14 · Posted

×
×
  • 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.