Jump to content
  • Sign Up

Rate this topic

Recommended Posts

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.

http://www.cureceliacdisease.org/?s=DH&submit=Search

Share this post


Link to post
Share on other sites

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")

Share this post


Link to post
Share on other sites

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! http://www.cityallergy.com/13-the-process-of-an-allergic-reaction/

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.

Share this post


Link to post
Share on other sites

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! http://www.cityallergy.com/13-the-process-of-an-allergic-reaction/

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.

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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. 

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.


×
×
  • Create New...