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Rash Mimics Dh But Not Celiac


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31 replies to this topic

#31 squirmingitch

 
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Posted 19 April 2014 - 04:26 PM

Low risk does not mean NO risk. If you're high risk you can have celiac, if you're low risk you can have celiac. 90% of the docs out there STILL think celiac is a RARE disease. We get this kind of stuff all the time. Docs just don't understand that 1 in 133 people have celiac disease. 90% of people don't know they have celiac disease & part of that is because doctors insist that it's rare, it's a childhood disease, that you have to be anemic & rail thin to be celiac, that you have to have rampant "D", that "C" is not a symptom of celiac etc... The vast majority of dcotors are woefully ignorant of celiac. Even those who have some experience in it; don't know much about it. They do not know the patient needs to be eating gluten for the tests. They don't know the full celiac panel. They don't know to take 5 endoscopic biopsies. They don't know oral steroid usage will invalidate the tests. They just don't know. Now, when you take all that ignorance & combine it with the skin presentation of celiac you have a major problem. GI's don't know about dh!!!!!!!! Derms don't know about dh. Derms are more ignorant than GI's are about celiac. 

 

I was officially dx'd after the fact by a nurse practitioner! I did not go looking for an official dx. By that time I knew what I had & was content to go forever w/o an official dx. This dx was a total surprise to me that he would dx me so long after the fact. Later yet, I went to  a GI. I won't go into the whole thing but it was like:

He "gets it".

He doesn't "get it".

 He 'gets it".

He doesn't "get it". 

He got parts of celiac disease & he got parts of dh surprisingly. But he was so misinformed on soooooo much! He absolutely could not understand why I was still getting lesions after being gluten-free for over a year. He actually ordered a celiac blood panel when I told him it was ridiculous b/c I had been strict gluten-free for over a year! And to top it all off, he did not order the full panel!!!!!!!!!!!!!!!!!!!!!!!!!! It was negative of course. But the point is that he thought going gluten-free was magic & that overnight all would be healed. I brought him copies with highlighted portions from the top celiac centers that backed up what I said but he, like so many, could not get past what he learned in med school about celiac (which is woefully inadequate). I "felt" him trying to have an open mind but he could not get past his ego & admit that I could possibly know more about the subject than he NOR that he did not know as much as the leading celiac centers. He actually wanted to do an endoscopy & biopsies on me. Well, again..... useless!!!!! I had been strict gluten-free for over a year (14 months to be exact).

This is a link to the dh photobank here on the forum:

http://www.celiac.co...oto-bank/page-5

Look at my photos beginning on page 5 (the link) and they continue halfway through page 6. The GI saw me shortly after the photos on page 6. I actually looked worse when he saw me. He stated that he believed I had dh & was therefore celiac but again, he couldn't get past the fact that I was not eating gluten & so why did I have lesions. He wanted me to go for a dh biopsy, still not understanding that dh presents even after going gluten-free until all the antibodies are out of your skin. He still could not grasp the fact that a dh biopsy would come up negative because I had been gluten-free for 14 months!!!!!!!!! Even despite my bringing him copies of these facts from the top celiac centers!

There is a point when you have to realize, your doctor doesn't know everything. And that just b/c they don't know everything, that does not make you crazy.


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Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


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#32 chrisgf

 
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Posted 20 April 2014 - 07:04 PM

Low risk does not mean NO risk. If you're high risk you can have celiac, if you're low risk you can have celiac. 90% of the docs out there STILL think celiac is a RARE disease. We get this kind of stuff all the time. Docs just don't understand that 1 in 133 people have celiac disease. 90% of people don't know they have celiac disease & part of that is because doctors insist that it's rare, it's a childhood disease, that you have to be anemic & rail thin to be celiac, that you have to have rampant "D", that "C" is not a symptom of celiac etc... The vast majority of dcotors are woefully ignorant of celiac. Even those who have some experience in it; don't know much about it. They do not know the patient needs to be eating gluten for the tests. They don't know the full celiac panel. They don't know to take 5 endoscopic biopsies. They don't know oral steroid usage will invalidate the tests. They just don't know. Now, when you take all that ignorance & combine it with the skin presentation of celiac you have a major problem. GI's don't know about dh!!!!!!!! Derms don't know about dh. Derms are more ignorant than GI's are about celiac. 

 

I was officially dx'd after the fact by a nurse practitioner! I did not go looking for an official dx. By that time I knew what I had & was content to go forever w/o an official dx. This dx was a total surprise to me that he would dx me so long after the fact. Later yet, I went to  a GI. I won't go into the whole thing but it was like:

He "gets it".

He doesn't "get it".

 He 'gets it".

He doesn't "get it". 

He got parts of celiac disease & he got parts of dh surprisingly. But he was so misinformed on soooooo much! He absolutely could not understand why I was still getting lesions after being gluten-free for over a year. He actually ordered a celiac blood panel when I told him it was ridiculous b/c I had been strict gluten-free for over a year! And to top it all off, he did not order the full panel!!!!!!!!!!!!!!!!!!!!!!!!!! It was negative of course. But the point is that he thought going gluten-free was magic & that overnight all would be healed. I brought him copies with highlighted portions from the top celiac centers that backed up what I said but he, like so many, could not get past what he learned in med school about celiac (which is woefully inadequate). I "felt" him trying to have an open mind but he could not get past his ego & admit that I could possibly know more about the subject than he NOR that he did not know as much as the leading celiac centers. He actually wanted to do an endoscopy & biopsies on me. Well, again..... useless!!!!! I had been strict gluten-free for over a year (14 months to be exact).

This is a link to the dh photobank here on the forum:

http://www.celiac.co...oto-bank/page-5

Look at my photos beginning on page 5 (the link) and they continue halfway through page 6. The GI saw me shortly after the photos on page 6. I actually looked worse when he saw me. He stated that he believed I had dh & was therefore celiac but again, he couldn't get past the fact that I was not eating gluten & so why did I have lesions. He wanted me to go for a dh biopsy, still not understanding that dh presents even after going gluten-free until all the antibodies are out of your skin. He still could not grasp the fact that a dh biopsy would come up negative because I had been gluten-free for 14 months!!!!!!!!! Even despite my bringing him copies of these facts from the top celiac centers!

There is a point when you have to realize, your doctor doesn't know everything. And that just b/c they don't know everything, that does not make you crazy.

i wish these docs knew about all this.  it seems lately that everyone is on this gluten-free diet...I would never want to go on it...its not fun or easy and I miss all the good foods, like today for the holiday 

 

I barely ate anything today and asked about the foods I felt were safe to eat...and then later I began itching so much and the rashes that were going away became so itchy and more red bumps....so upset.  I know you talked about eating salt/iodine...two of the foods were quite salty like the ham....could that make me flare up again?  btw...I am going to a second doc to get more answers.  the lady who is the head of the gluten support group feels that my labs may have been misinterpreted...


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