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Rash Mimics Dh But Not Celiac
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wow i never heard about dh and shellfish...I will have to try that. but its taken over a month and now the rashes are going away more...I really don't want to get them back...they are horrible.  I am trying hard to keep all gluten n dairy out of me,....I worry with the holiday this weekend.  atleast I know what I cook here at home will be safe...worried about when I go to other homes.  if for some reason there is any shrimp, I may just eat a lot if I am courageous enough lol! 

 

I have read some of the other threads in this website...so glad I found it.  very helpful!  tomorrow is another day of my wonderful df and gluten-free life :)

 

does it get any easier????

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YES! It does get easier, I promise! Really it does.  Personally, I wouldn't eat anything I don't make myself. Carry food with you. No way, no how, that i would eat anything I don't make. Too much chance of cross contamination. Family & friends may mean well but they don't know all the rules. Hey, it's hard enough for us to get all the rules down pat --- how in the world can we expect others to? WE are responsible for OUR OWN diet & for keeping ourselves safe. We can't expect others to do it for us. You have to learn to be strong & pipe up & tell them that you simply can not risk taking steps backwards by getting cross contaminated. Those shrimp may have been drained in a colander that has been used for years to drain gluten pasta --- sure fire cross contamination issue! If people are truly your friends then they will respect that you know the rules & have to protect yourself. Take some goodies along that you especially love. Show them to your host & tell them you are happy just to be there & enjoy the company & socialization but you can handle your own food. You have to be strong. 

 

Happy Easter

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wow i never heard about dh and shellfish...I will have to try that. but its taken over a month and now the rashes are going away more...I really don't want to get them back...they are horrible.  I am trying hard to keep all gluten n dairy out of me,....I worry with the holiday this weekend.  atleast I know what I cook here at home will be safe...worried about when I go to other homes.  if for some reason there is any shrimp, I may just eat a lot if I am courageous enough lol! 

 

I have read some of the other threads in this website...so glad I found it.  very helpful!  tomorrow is another day of my wonderful df and gluten-free life :)

 

does it get any easier????

dh and shellfish ,,,  I shudder to think of eating shell fish at this point :ph34r:

a lower iodine diet is important  for those of us with dh ,, if we also  have thyroid issues that makes it quite a balancing act

 

 

I had neg blood testing for celiacs

my endoscopy ( about 18 months after I was gluten free but the doc said that would not matter  <_< ) was neg

 

obviously the docs in my little town are not to up on celiacs <_<

 

dh biopsy was positive , positive response  to    a gluten free diet = celiac diagnosis ( by a different doc  :lol: )

fast forward  5 years ,,, I recently had gene testing done in Dec of 2013 ( for some other things ) so they also did the gene testing for celiacs

 

positive for celiacs genes  :mellow:

 

 

and YES it does get easier :wub:

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dh and shellfish ,,,  I shudder to think of eating shell fish at this point :ph34r:

a lower iodine diet is important  for those of us with dh ,, if we also  have thyroid issues that makes it quite a balancing act

 

 

I had neg blood testing for celiacs

my endoscopy ( about 18 months after I was gluten free but the doc said that would not matter  <_< ) was neg

 

obviously the docs in my little town are not to up on celiacs <_<

 

dh biopsy was positive , positive response  to    a gluten free diet = celiac diagnosis ( by a different doc  :lol: )

fast forward  5 years ,,, I recently had gene testing done in Dec of 2013 ( for some other things ) so they also did the gene testing for celiacs

 

positive for celiacs genes  :mellow:

 

 

and YES it does get easier :wub:

ok so I am going to have to eat shellfish eventually to test myself.  I am not looking forward to that tho....rashes are slowly disappearing...but I hoping the discolorations leave too.  its almost summer and they don't look to nice. 

 

it seems that others blood and endoscopy tests were negative like mine...so I am confused about this rash.  maybe its just a rash I get from gluten and not dh...cuz that's what my results make me feel.  

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so I have done some research and found some answers...but still want to check with doc later.  according to my bloodwork, I have the dq genotypes, but my risk factor is low...so that, along with my "supposed" dh rash make me feel the doc said I cant get celiac because I am at a low risk. like I said earlier, the rash mimics the gluten rash a lot.  being off gluten makes me feel a lot better, especially once the rash disappears more.  if I am at a low risk and have this dh, why would they say no celiac?  or am I just going crazy? lol

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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.com/gluten-free/topic/94056-dh-photo-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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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.com/gluten-free/topic/94056-dh-photo-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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