Rash Mimics Dh But Not Celiac

[chrisgf]

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????

[squirmingitch]

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

[cahill]

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

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  )

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 

 

 

and YES it does get easier

[chrisgf]

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

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  )

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 

 

 

and YES it does get easier

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.  

[chrisgf]

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

[squirmingitch]

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:

https://www.celiac.com/forums/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.

[chrisgf]

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:

https://www.celiac.com/forums/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...

[RobF]

Hi folks. I realise this thread is nearly four years old but I've only just discovered it. I am very interested in your posts chrisgf and greenbeanie because I lack the DLQ2 and DLQ8 genes, have tested negative for antibodies from blood test and for villous atrophy from intestinal biopsy (both after gluten challenge), though have for years otherwise suffered all the GI and general physiogical symptoms of celiac disease after eating gluten, often accompanied by an intensely itchy blistery rash. Oddly, I seem ok with barley gluten but not wheat gluten. I am ok with beer (even wheat beer). I don't think it's wheat allergy because I'm ok with wheat glucose syrup. Gastroenterologist was adamant I don't have celiac disease, particularly given gene test result, but doesn't seem to appreciate the weirdness of my getting the rash. I'm certain I have an autoimmune response to gluten (particularly wheat gluten) but it seems nobody really knows whether it's celiac disease as such or rather just something like it, and (more significantly) if someone in my category can be at risk of villous atrophy from gluten ingestion. What if my rash is diagnosed as DH? Does that trump all the negative test results and mean I have celiac disease, and does it (regardless) mean I'm at risk of villous atrophy? I also have dairy allergy (which comes and goes) but am not lactose-intolerant. 

[GFinDC]

Hi Rob,

Welcome to the forum!

DH is a condition that only people with celiac disease get.  So if you have DH you have celiac disease.  There is a separate test for DH where they take a skin biopsy from near a lesion.  People with DH may not have positive blood tests at first.  So a skin biopsy is a better test for them.  The gut damage and blood antibodies may show up after a period of time though.

[KCNOTHIGER]

Check for EOE- there’s a longer name for it. It’s a different type of autoimmune but it’s more then just gluten. Top 2 are gluten & dairy but can also be fish, nuts, eggs and so forth. Your symptoms fit into this. Biopsy of the esophagus is the only way to see if you have it. No blood test will test for this. 

[Rashedout]

Does anyone have experience with Dapsone for DH improvement?

[Tigerlilly]

Yes I have D. H. I have used dapsone and found I needed more than one tube. Dapsone cream in Canada is 90$ , Yes it did work . I was told the pills are very hard on the body.

[squirmingitch]

2 hours ago, Rashedout said:

Does anyone have experience with Dapsone for DH improvement?

Here are some threads on the subject:

 

[April42]

On 4/17/2014 at 12:42 PM, squirmingitch said:

I don't know everything about it but I know a good deal. You're embarrassing me Colleen.

 

Okay, down to business. 60% of the time, those with dh test negative on the celiac blood panel. That brings us to the question of whether the doc even did the full, current blood panel. You should get your test results from the doc & compare them to this:

 

this is the current FULL celiac blood panel:


Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA 

The DGP test was added recently to the full panel.


Also can be termed this way:

Endomysial Antibody IgA
Tissue Transglutaminase IgA 
GLIADIN IgG
GLIADIN IgA
Total Serum IgA 
Deamidated Gliadin Peptide (DGP) IgA and IgG

 

And you will need the ranges from the tests or nothing will make any sense.

 

 

Okay, on the endoscopy --- those with dh still get damage to their villi but it tends to be patchier. Equate that to harder to get a biopsy for when you consider the intestine, if cut open & spread out would cover a tennis court. That's a great deal of territory. The min. recommended # of samples for celiac biopsy is 5 or 6 -- I can't remember which but if one has dh -- IMHO, that # should be higher.

 

AND I CAN NOT STRESS THIS ENOUGH!!!!!! YOU MUST BE ACTIVELY EATING GLUTEN FOR ANY OF THE TEST FOR CELIAC!!!!!!! That means for the blood panel, for the endoscopy & also for a dh biopsy. Not gluten light, not a cracker on the day of the test but a FULL gluten diet AND if you had been off gluten for any time then you need to have been ON gluten for 2 months before the tests. Otherwise you get false negatives.

 

Okay, is this rash bilateral? Appearing on both sides of the body --- ie: both hands, both arms, both whatever. 

 

Explain what you mean when you say pimples please.

 

If you have dh then that is a dx of celiac disease --- no further tests required & it's the best way for people with dh to get dx'd. Colleen said it right when she said the skin biopsy is to be taken from a clear area adjacent to an active lesion NOT ON the lesion. The biopsy is stained with a special dye & the dermatologist MUST put on the lab order that he is looking for dh otherwise the lab won't know & won't treat the biopsy correctly.

 

It sounds like you could have dh but the pimples part throws me & I would like to know if this presents bilaterally.

I know this post is so old but has been a blessing to find! My answers:)