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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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    • It sure is, it really is. 
    • shellyb, I have info. for you & you may yet be able to get an official dx from your dermatologist as she sounds like she would be willing to learn. If you are dx'd with dh it is definitive & no other testing is needed. You don't need to see a GI. Im in FL & have had a long day watching Tropical Storm Hermine & making preparations for it's track which is over where I live. I'm tired! I will have links for you to reputable medical info. on the rash but it make take me till tomorrow or even longer if we lose power.  I'll be back as soon as I can. Question: You're on Dapsone now? How long have you been on it? How is it working for you? Are you getting the proper testing at regular intervals to make sure it isn't doing bad things to you? Were you gluten free before the skin biopsy?
    • Thank you so much for your quick response, GFinDC. While I wouldn't be completely opposed to another skin biopsy, I already had 4 done (3 were done prior to my dermatologist suspecting DH) so I don't love the idea of  yet another hole and scar on my body. Plus, fortunately I don't have any fresh lesions now, which I believe is needed for the biopsy. I wish I would have known to see a GI before going gluten free but I was so desperate to get any relief that I started that and Dapsone as soon as my doctor mentioned it to me.  My rash is definitely symmetrical and I have it in all of the "classic" DH spots although it basically spread over my entire body. As much as I'd like a more formal diagnosis, I really don't think I can go through all of that again. It was so bad that not only was I getting no sleep but I had to change my sheets every morning because there was blood all over them. Sorry, TMI. The worst part is that this all developed during my ninth month of pregnancy and got much worse after I delivered my baby. So not only was I dealing with this insanely itchy rash but I had a newborn and a toddler to take care of.  My daughters' pediatrician did mention doing DNA testing on me first and then my daughters to see if there's any concern that they may be susceptible. I may just go that route for now. I was just curious if others have had similar test results to mine and how did their doctors treat it? Thanks again!
    • Hey guys, the last year and a month of transitioning to totally gluten free was hard, but I now seem to be healthy. The first six months I got horrible cramps that would suddenly come and hit hard, but I really havent seen any of those since about February-March. One thing that I wouldnt say has gotten better is my psyche. I was always sort of an anxious person (hard not to be when you dont feel well yet you have "IBS" and you're just "nervous", which all of you probably know), but I am borderline hermit now. I finally went to the doctor today and was prescribed prozac, so hopefully that helps, but I was just wondering about you guys? Thanks  
    • Thank-you, thank-you! I am so relieved to have input from others who have experience with celiac disease. I'm not sure what I'm going to do about the school cafeteria. I'll ask our very nice and experienced Cafe Mgr for realistic info and details. My primary concern is the safety of my daughter and packing a lunch will not be that big a deal, even though she prefers the fresh prep instead of lunchbox offerings. Sigh. It sounds as if the 504 is unquestionably the preference over the IHCP, since the 504 is binding and follows the student through his/her academic career. I have a meeting with the admin team on Tuesday. Until then, I'm reading lots so i can be informed. And, dkader, I sent you a private message via the blog's feature. I'd certainly love to read the 504 info you have squirreled away. Thank-you so much!
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