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Rash Mimics Dh But Not Celiac


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31 replies to this topic

#16 chrisgf

 
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Posted 17 April 2014 - 03:52 PM

Thank you both so much!

 

as for the genes with the minus sign...it was my error...on my lab it shows it like this            DQ2-, DQ8-    I thought that meant "negative", but they would usually be in front of the letters....right? lol  I honestly have no clue....this column was under the heading "overall risks for patients carrying the DQ genotype"...the levels go higher and the highest one is DQ2Homozygous.  my gene is at the lowest end

 

                       so does this mean I have the gene, but at low risk?  I sorry if I ask a lot....I am frustrated over all this and just want my body to be normal again.  I don't see my gi doc until june, so I will have a lot of questions to ask him. 

 

I think I am just going to continue my gluten-free and df diet...since I know both make me miserable


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#17 squirmingitch

 
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Posted 17 April 2014 - 04:53 PM

Hmmmmmm.... I don't know if the minus would be before or after. Can you perhaps scan that & post it here? You can black out your personal info so we don't see that part.

 

Don't worry about asking lots of questions! That's what Celiac.com is about. I feel your frustration. I'm so sorry. I know you just want to feel good again & wonder if you ever will. (((HUGS)))). I think you're making a wise decision to stay gluten-free & df. We have a saying.....

If it makes you sick, don't eat it.   So simple but so many have such a hard time doing just that. 

You can try in say 6 months to introduce dairy back in. Keep a food log so you can track things. Try one type of dairy at the time for 1 week each before you introduce another. If all dairy is still out then wait another 6 months & try again. Often, people can tolerate yogurt b/c it carries it's own probiotics with it. Have you tried that? I worry about you getting enough calcium for your bones. Maybe you can try a calcium supplement?


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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.

 


#18 greenbeanie

 
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Posted 17 April 2014 - 05:34 PM

Hi there. I've been following this thread but didn't post earlier because I'm not sure how helpful this will be, but I have a somewhat similar situation (and a partial solution that's helped me): I'm also negative for DQ2 and DQ8, though I have the alpha allele of DQ2.5 (and beta alleles of DQ5 and DQ7). Ignore that detail if it doesn't make sense - the genes stuff is complicated and not really relevant to my point. I had tons and tons of celiac symptoms since my teens (I'm 38 now), including diarrhea 4-6 times per day for 20 years, horrible itchy, blister rashes since I was five years old, and neurological symptoms as well. My daughter has biopsy-confirmed celiac. Some of my other symptoms are listed in my signature.

Anyhow, I've been strictly gluten-free for about 10 months now, along with my daughter. Almost immediately the diarrhea, esophagitis, gastritis, insomnia, and irritability started to improve. The balance and coordination problems took longer, but within six months I had major improvements there too. I'd been very lactose intolerant for over 20 years, and suddenly I could eat dairy again after about 9 months. All in all, these were astounding improvements! (And inexplicable too, since my celiac tests were negative - and the improvements in my health were just as dramatic as my daughter's.) My rash also improved a lot at first, but then it actually got WORSE again, especially on my scalp. I changed shampoos a dozen times and used all gluten-free products, yet the rash kept getting worse. Oh, and my tongue had swollen up during my gluten challenge too, and hadn't gotten much better after I stopped gluten. This was also puzzling.

It turns out that I'm extremely sensitive to sulfites. Many gluten-free products are high in sulfites (at least in the U.S.) because they include potato starch flour and tapioca flour, which are bleached with sulfites. You can't usually tell from labels if sulfites were used in processing, since they not considered "ingredients" that must be listed on labels. I also react strongly to sulfites that occur naturally in all fermented foods, anything with vinegar, lemon juice from concentrate, pectin, cheese, dried fruit, and a whole bunch of other gluten-free things that I was eating every day. I had actually started eating MORE sulfite-containing foods that I ever had before because I'd started baking things with tapioca and potato flour at home. I also have a sulfite reaction to many brands of probiotics (from the fermentation, I guess), though I can tolerate some brands. And some brands of bottled water actually have sulfites added too, which was adding to my problem because I drank bottled water from a big dispenser at work.

As soon as I figured out that sulfites were the problem, the rash went away completely. The oozing blisters on my scalp and elbows disappeared within days. If I slip up even a little - for instance, by having a little bit of salad dressing once a week - the scalp rash comes right back. So for the time being I am on a gluten-free, low-sulfite diet and I feel great. It is extremely restrictive, but I'm hoping I'll be able to tolerate a moderate amount of sulfites again after my body calms down more.

Your comment about a reaction to gluten-free pizza dough caught my attention, since frozen doughs are often high in sulfites (they're also used as a dough conditioner). Perhaps sulfites are not your problem at all, but it's worth a try to see if it helps with the rash. My rash was never biopsied because my doctors stopped considering a gluten problem when my genetic test came back negative, so I really don't know much about that process. But if sulfites are causing or worsening your rash, I'd think it would be really obvious within 2-3 days trying a low-sulfite diet. It certainly can't hurt to try. I don't have the bookmark right now, but you can find lists of sulfite foods online pretty easily. If you give it a go, though, make sure to avoid ALL fermented foods, spice mixes, vinegars, etc. - not just things with sulfites added as a preservative. I was eating almost no foods with preservatives and still had a huge reaction to much smaller amounts of naturally-occurring sulfites. Good luck!
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Daughter: Positive tTG-IgA, DGP-IgA, and DGP-IgG. Celiac confirmed by biopsy in June 2013, at age four. Clear gastrointestinal, behavioral, and neurological/sensory symptoms since very early infancy, even when exclusively breastfeeding.

Me: Diagnosis still unclear after extensive testing: Atypical wheat allergy, severe NCGI, or false negative celiac tests? Doctors disagree.Gluten challenge caused acute gastritis, esophagitis, and angioedema that lasted 4 months and was eventually determined to be a sulfite allergy. Gluten light for 15 years, then gluten free since June 2013.
Long history of eczema, chronic diarrhea, steatorrhea, ataxia, peripheral neuropathy, infertility, chronic insomnia, low cholesterol, vitamin deficiencies, and joint pain. Improved greatly within six months of going gluten-free.


#19 squirmingitch

 
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Posted 17 April 2014 - 05:43 PM

greenbeanie, so your daughter is dx'd from positive blood & endoscopy. You are negative for genes. Has your daughters father been gene tested? I ask because your daughter HAD to get the genes from somewhere & if not you then your hubs. If your hubs is negative then something has to be wrong with your gene test. Of course, 1/3 of the population has celiac genes so there's a good chance your hubs has one or more but I was just wondering..... 


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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.

 


#20 greenbeanie

 
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Posted 17 April 2014 - 06:03 PM

greenbeanie, so your daughter is dx'd from positive blood & endoscopy. You are negative for genes. Has your daughters father been gene tested? I ask because your daughter HAD to get the genes from somewhere & if not you then your hubs. If your hubs is negative then something has to be wrong with your gene test. Of course, 1/3 of the population has celiac genes so there's a good chance your hubs has one or more but I was just wondering..... 

 

My daughter was conceived in a non-traditional way (with medical intervention), so we do not have full info about the other half of her genes. She didn't have the gene test herself because her celiac diagnosis was so clear. I am still extremely skeptical about my own test results, but at this point it doesn't make much practical difference. I'd certainly remain gluten-free at home anyway, for my daughter's sake, and pretty much all restaurant food contains seasonings, dressings, flours, or fermented things with sulfites. I do believe that someday a biomarker for severe NCGI will be found that is especially associated with rashes and neurological reactions to gluten, and maybe then I'll get a clear diagnosis at last!


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Daughter: Positive tTG-IgA, DGP-IgA, and DGP-IgG. Celiac confirmed by biopsy in June 2013, at age four. Clear gastrointestinal, behavioral, and neurological/sensory symptoms since very early infancy, even when exclusively breastfeeding.

Me: Diagnosis still unclear after extensive testing: Atypical wheat allergy, severe NCGI, or false negative celiac tests? Doctors disagree.Gluten challenge caused acute gastritis, esophagitis, and angioedema that lasted 4 months and was eventually determined to be a sulfite allergy. Gluten light for 15 years, then gluten free since June 2013.
Long history of eczema, chronic diarrhea, steatorrhea, ataxia, peripheral neuropathy, infertility, chronic insomnia, low cholesterol, vitamin deficiencies, and joint pain. Improved greatly within six months of going gluten-free.


#21 squirmingitch

 
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Posted 17 April 2014 - 06:27 PM

Ahhhh, I see. Thanks greenbeanie for the info.. I agree with you about the biomarker for NCGI & will even go so far as to say that one day we will have a way to dx celiac disease without the need for glutening oneself. Oh, won't those be happy days? Happy, happy days!

 

Well, once again we're back to that saying --- if it makes you sick, don't eat it. I'm glad you follow that. :)


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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.

 


#22 chrisgf

 
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Posted 17 April 2014 - 07:20 PM

greenbeanie....thanks for responding.  I never thought of sulfites before...but it sounds like there are people like your self that cant have it or need to limit their intake of it.  right now I am at a point of just giving up.  there is so much info out there about celiac and gluten intolerances that I am overwhelmed.  I had joined a gluten support group back in October...its been the best.  when I tell my story of the past five years of symptoms, they all said it sounded just like celiac.  I told this to my gi doc to who knows about celiac and he also felt that's what I had...until I got all these tests done.   he wrote on my lab that I am negative for celiac because of genetics test, so that I am gluten intolerant instead.  of course not eating gluten has helped me a lot...

 

I wish I had the answers to what I need...with my symptoms, especially the rash, I just feel that its celiac.  the rash is my biggest problem...I want to stop itching once and for all! lol

 

I suppose I will never understand my labs...but I appreciate all the wonderful replies to this... :)


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#23 squirmingitch

 
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Posted 18 April 2014 - 05:30 AM

Chris, please don't give up. I know it's rough. Stay with your support group ~~~ they will help you & you need the support.

 

When you see your GI, make sure to tell him you had been gluten-free for so many months & only went back to eating gluten about 13 days before the tests. 

Your lab bloods don't mean a thing since they are invalidated so don't bother trying to understand them. The gene test --- make sure & ask your GI to explain that to you.

 

One thing you can do to see if you get any relief from the rash is to go low iodine. See thyca.org for a low iodine diet. You're already most of the way there since you're dairy free (dairy contains lots of iodine). Iodine makes many of us with dh flare horribly & many have had relief from going low iodine for  2 weeks or more. 


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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.

 


#24 chrisgf

 
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Posted 18 April 2014 - 11:30 AM

squirmingitch....

 

I have done the food diaries  before, which what showed me that dairy didn't agree with me...I am going to give it a while longer to see how clear the rash becomes...that way maybe I wont have to stop iodine foods.  I never heard of that as a problem with people...seems like a hard diet to stick to.  I have a lot of questions for my gi doc when I see him....I just hope he is helpful and doesn't make me feel like I am just going crazy in my head...I know how I feel when I stay on a df and gluten-free diet...it is great!  as for the labs....I have no clue....to me it looks like I have the dq genes and am at the lowest level to probably have celiac.  the rash to me is dh...I felt that from the beginning...it mimics it so well.  hopefully I can get thru easter with no cross contamination because I really don't want to be sick


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#25 squirmingitch

 
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Posted 18 April 2014 - 03:27 PM

It sounds so much like dh to me. The bilateral "echo" is a real clue. The type of itching you describe, that it goes haywire (as if i doesn't go haywire all the time anyway (smirk)), the way it presents, how you react when you eat gluten. It all adds up.

Okay, you don't have to stay with the low iodine diet. Most people find they can do it for 2 weeks & things improve dramatically. That was not the case with me however. But we are all different. But if you don't want to do it --- no problem, that's your choice. However, I will say that if you eat seafood & especially shellfish, & notice a flare, then you know the iodine got to you (barring a shellfish allergy of course) and you would also know that it is dh. Several of us have researched & can't find a single rash or skin condition that presents like dh that is also sensitive to iodine. Only dh has this sensitivity. Now remember, not every person with dh has problems with the iodine. This is sort of a test you could do to assure yourself it is dh. Eat lots of shellfish. If you don't react, then it doesn't mean it's not dh but if you do react then you can settle your mind it is dh. But you will pay the price in a flare up. Yeh, I hear you! :D There was no way I wanted to itch any more than I already was either! It's your choice.

 

It sounds like you've been reading threads on here --- if not then do so. Even so, I will repeat this:

DH can & will & does flare even when one is eating strict gluten-free. And it can do that for years. There is no rhyme or reason & it will make you bonkers. No point in trying to figure it out or try to make sense of it --- you'll go crazy trying. This is why it is imperative that you be absolutely pristine in your diet. No taking chances of any kind! No eating out at restaurants, take no chances on getting cc'd. It's a hard line to walk but harder is dealing with the insane itch. I'll take dealing with a pristine diet any day over the suicidal itch!!!!!


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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.

 


#26 chrisgf

 
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Posted 18 April 2014 - 06:55 PM

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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#27 squirmingitch

 
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Posted 19 April 2014 - 03:46 AM

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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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.

 


#28 a1956chill

 
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Posted 19 April 2014 - 04:26 AM

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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Gluten free Oct/09
Soy free Nov/10

numerous additional intolerances,, i.e. If it tries to kill me I do not eat it .
After 40+ years of misdiagnoses I was diagnosed with:
Dermatitis Herpetiformis : Positive DH biopsy...... Celiac :based on DH biopsy and diet response.

Osteoporosis before  age 50
Hashimoto's thyroiditis disease .

Diagnosed type 2 Diabetes 

Osteoarthritis

Gilbert's Syndrome , confirmed by gene testing


#29 chrisgf

 
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Posted 19 April 2014 - 07:52 AM

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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#30 chrisgf

 
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Posted 19 April 2014 - 09:31 AM

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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