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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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dani nero

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danniee,

thanks for your input, but I am fairly certain that the person you are replying to (Dani) is no longer participating on the forum. I have not 'seen her" in quite some time. 

Best regards,

IH

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Here are my pics. (And let me also add I haven't been officially diagnosed either so I wasn't sure if I should post or not but since the above two posters are in the same boat I decided to go ahead. I do hope someone with a positive biopsy will post.)

Some of these are rather gross, sorry!!

http://i1172.photobucket.com/albums/r571/janerane/IMG_2637.jpg

http://i1172.photobucket.com/albums/r571/janerane/IMG_2475.jpg

http://i1172.photobucket.com/albums/r571/janerane/IMG_2444.jpg

http://i1172.photobucket.com/albums/r571/janerane/IMG_2441.jpg

http://i1172.photobucket.com/albums/r571/janerane/IMG_2298-1.jpg

http://i1172.photobucket.com/albums/r571/janerane/IMG_2244.jpg

http://i1172.photobucket.com/albums/r571/janerane/IMG_2342.jpg

http://i1172.photobucket.com/albums/r571/janerane/IMG_2601.jpg

http://i1172.photobucket.com/albums/r571/janerane/IMG_2435.jpg

These were taken at various stages of my rash, I'm not sure what was taken when.

Features:

Started out with one small itch on the back of my neck, took two months for it to go elsewhere and when it did it really did!!

Jumped from neck to both elbows, both hips, back of both knees.

Severe uncontrollable itching, would come in bursts. I would have to scratch and scratch for 15 mintues, then it would get better until the next burst. Would wake in night and scratch.

Burning feeling 1-2 days before breakout.

Skin was very prickly and burned, did not like having anything touch it. Taking a shower was very uncomfortable, did not like water or the washcloth on my skin.

At times it would feel like hives. After scratching an area over and over it would become very inflamed

After a couple weeks of rash on elbows, hips and knees it spread to lower back, slowly going up spine and then spreading outwards. The elbow rash spread up and down my arms about 3 inches both ways. Then the front of thighs broke out, then the front and back of shoulders broke out, then the hip and back rash spread into my stomach. Hundreds of little dots.

Then the whole thing started going away. Total time - 6 months. It is now almost entirely gone, just a bit in one spot.

Edited to add - I've been gluten free for 2+ years and think I had some cc whch caused the rash. I stopped eating the one food I thought may be giving me this. Also started taking loratadine. Rash started to go away. I then reintroduced an oreo a week (as a test to see what would happen and also because I had an appt with dermo and didn't want it to disappear entirely before I met with him). Rash came back a bit and hung around but nowhere near as severe as before. Stopped the oreo after my appt and rash continued to disappear.

Yay! BACK of both knees.... Not celebrating it but that's where my rash is right now Mainly (which I haven't read elsewhere YET)... I have been gluten free for a very long time... 10 years or so due to Celiac. For 2 years I was treating my psoriasis on my heel as a foot fungus. BAD doctor diagnosis because my other doc was on vacation. But I had to take a medrol dose of steroids recently to fight an infection and low and behold my heel cleared up. She said that's not a fungus if it cleared up that fast. She said it was from my Celiac. I was on my 3rd bout of poison ivy this year when I got suspicious about that. She has put me on Dapsone. I have scratched the back of my knee so hard that I now have bruise marks there. Trying not to scratch but I wake myself up with the scratching. Mind you this is all from cross contaimination. I NEVER cheat. It's just not worth it to me. My rash looks the same as yours. My first one so resembled poison ivy but I didn't scratch it and it didn't spread. It was on my chest and horribly red, big blotches with blisters. I also noticed that another spot that I inadvertently shaved (on my leg) came back with the 2nd poison ivy. But thru this whole process it doesn't spread if I scratched. Just scabbed up. My 2nd bout was on my neck and chin. Just severe swellling and itching but no blisters. I started with cortison cream thinking it was poison ivy again. The itching is driving me crazy and I'm wondering how long the Dapsone takes to help with the rash?

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We haven't heard from JaneWhoLovesRain in years now so I imagine she won't see your post.

 

As far as how long the Dapsone takes to give you some relief; I have never been on it (allergic to sulfa drugs) but from what others say it should start giving you relief in just days.

 

BTW, I've had on the back of both knees. In fact, I had it there long before I had it actually ON my knees.

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Hi - I just happened to log in today!  When I told the GI doctor I saw (which wasn't unitl a couple of years after going gluten-free) all of my symptoms, he said he was 85% sure I had celiac based on my symptoms alone.  He said the only one that didn't fit was the rash BEHIND the knees, he said it should be in the front of the knees.  I personally don't think it makes much difference if it is front or back, my rash was very symmetrical and the itching was horrendous and all my other itchy spots fit celiac to a t.

 

Dapsone is supposed to help right away from what I understand, within a couple of days there should be definite improvement.  I've never taken it though, so I can't speak from experience, just from what I've heard others say.

 

Jane

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These are pictures of my 4 year olds blisters 

Do they look like DH?

We have seen many Dermatologists and Allergists who said they don't know what it is but it looks like DH so we had a biopsy which came back inconclusive.

We have been Gluten free for 18 months but the spots keep coming, When she has Dairy or Soy she scratched all night even with Antihistamines.

 

http://www.flickr.com/photos/ethanhobbs/10848312076/

http://www.flickr.com/photos/ethanhobbs/10848415764/

 

 

I have been reading many posts and it seems the members here know more than the doctors we have been seeing.

 

if anyone can help me identify these spots I would be so grateful and relieved as the past 2 years have been super hard living with the night scratching and bleeding. 

 

worried mom 

The night itching is what got my attention. It's horrible. I just want to climb out of my skin! Looks like mine... I've been scratching so hard that I have bruises but mostly in my sleep. :(

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Hi - I just happened to log in today!  When I told the GI doctor I saw (which wasn't unitl a couple of years after going gluten-free) all of my symptoms, he said he was 85% sure I had celiac based on my symptoms alone.  He said the only one that didn't fit was the rash BEHIND the knees, he said it should be in the front of the knees.  I personally don't think it makes much difference if it is front or back, my rash was very symmetrical and the itching was horrendous and all my other itchy spots fit celiac to a t.

 

Dapsone is supposed to help right away from what I understand, within a couple of days there should be definite improvement.  I've never taken it though, so I can't speak from experience, just from what I've heard others say.

 

Jane

I guess it's slowly reducing the huge red patch with blisters. I think the inflammation is from me scratching. The other side doesn't look half as bad. I was painting a ceiling and wearing yoga pants and I think sweating there so perhaps that's why it is worse than my arms. I have one little spot on both forearms that I manage to leave alone. Last night was my third night on Dapsone. Have seen just the slightest reduction in size but the itching is just as bad with the burning sensation as well. Thanks

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I have been gluten free for four years , I still have DH outbreaks but they are not as extensive as they used to be.  I do still wake up every nite with terrible itching which causes scratching to excess. The hot humid weather of summer makes it all the worse.  My worst areas are buttocks and forearms.  I have not had clear skin for at least 7 years.  I figure this had been building for so many years that it will take many years to disappear.  It does not seem to matter what I apply to my skin, nothing really helps.  I have never taken dapsone.

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I'm so thankful to have found these photos and descriptions! I have had rashes like this on my abdomen, chest/breast area, and scalp. I thought I was going to go crazy; they itch and burn and fade and then would randomly return. I posted a bit earlier in another thread about a rash I had, but I wasn't sure it was related to my gluten intake. I'm much more confident after seeing these comments. I'm dealing with one right now, and I am breastfeeding, so the ones on my chest are really bothersome during that time. 

Thank you again for all of your helpful information. 

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On 11/21/2012 at 11:54 AM, sisterlynr said:

My scalp is covered especially back of head. I have some lesions on both knees, not as much as in these photos. The sole of my right foot is covered with lesions. The ones on my foot have healed and the skin has peeled off.

 

Trying to load the photos. . . we'll see if I can get this accomplished. :huh:

 

http://i1323.photobu...6/closerash.jpg

 

http://i1323.photobucket.com/albums/u584/lindareading56/siderashclose.jpg

 

http://i1323.photobucket.com/albums/u584/lindareading56/closerash1.jpg

 

http://i1323.photobucket.com/albums/u584/lindareading56/lynupperbackrash.jpg

 

 

I have been on Dapsone since October 20th and eating gluten free and iodine free (started on the same day) I have lost 25 lbs and my sugar level is much better.

 

I still have the itching, burning and stinging but is probably at least 75% better now.

I am a recently diagnosed & confirmed Celiac with DH. I had the Rash for 1 1/2 yrs with my bottom being the worst, then my elbows, hands, wrists & top of knees.  I started 50 mg of Dapsone a day (I too am allergic to Sulfanomides, but my pharmacist & Doctor researched the molecular components of Dapsone and both felt it would be ok to try and see if it would cause me an allergic reaction, they felt it would not, and thank goodness I tried it as I did not have any reaction, only some relief after 48 hrs) and I also went immediately to a gluten-free diet. I am about 6 weeks post diagnosis and I am about 80% cleared up. I’ve reduced Dapsone to 25 mg a day and am strict about eating gluten-free. I will try to post some more pictures, this site limits to direct posts so I’ll also try to use  photobucket. So far all of the pictures posted here look exactly like my rash and the descriptions of itch, weeping & popping blisters... sound like my own words. So very painful and the itch is just cruel! I never really found any topicals  that really helped, GoldBond with Lidocaine was good, Aquaphor (instead of Vaseline) was also good when sores dried up, and prescription Alvecyn (gel or liquid spray) helped to dry up and debride my skin. I lived on ice packs. Hoping everyone finds help and some relief from this intense, life robbing disease. You can see the fluid filled, oozing & bloody blisters that never would heal until I was dx’ed and confirmed as a DH Celiac and started Dapsone and gluten-free diet. 

C9D3D071-C3DC-4DCA-9226-D49461839D64.jpeg

3E125CF8-63BC-411D-A89F-8A9DD55FCA71.jpeg

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On 9/29/2014 at 3:39 PM, JaneWhoLovesRain said:

Hi - I just happened to log in today!  When I told the GI doctor I saw (which wasn't unitl a couple of years after going gluten-free) all of my symptoms, he said he was 85% sure I had celiac based on my symptoms alone.  He said the only one that didn't fit was the rash BEHIND the knees, he said it should be in the front of the knees.  I personally don't think it makes much difference if it is front or back, my rash was very symmetrical and the itching was horrendous and all my other itchy spots fit celiac to a t.

 

Dapsone is supposed to help right away from what I understand, within a couple of days there should be definite improvement.  I've never taken it though, so I can't speak from experience, just from what I've heard others say.

 

Jane

MendyLou and RainJane, I got relief within 72 hours of starting the Dapsone, 50 mg a day and a strict gluten-free diet. After a month, I dropped dosage to 25mg a day am almost completely free of rash. Only a few bad,  stubborn blisters on my bottom. Best of luck to you. 

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In may of this year, I suffered from the worst and most itchy rash ever! Started at the elbow, moved down to the hands, then to the legs and abdomen. It was awful, keeping me up at night; only ice packs relieved the itching. After several trips to dr, dermatologist, and allergist, I read this forum and I think I may have DH.  Although the derm did a biopsy, I don't think it was for this. I stopped eating all gluten and miraculously the rash started going away! After about a month, I was clear! I tried eating a piece of bread shortly after and ended up with a mouthful of canker sores. Since then, there have been a couple of times I've consumed gluten accidentally and each time I had stomach pain or digestive issues. I think I'm undisgnosed celiac! Is it worth eating gluten again to get a formal diagnosis? 

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3 hours ago, 54dx said:

In may of this year, I suffered from the worst and most itchy rash ever! Started at the elbow, moved down to the hands, then to the legs and abdomen. It was awful, keeping me up at night; only ice packs relieved the itching. After several trips to dr, dermatologist, and allergist, I read this forum and I think I may have DH.  Although the derm did a biopsy, I don't think it was for this. I stopped eating all gluten and miraculously the rash started going away! After about a month, I was clear! I tried eating a piece of bread shortly after and ended up with a mouthful of canker sores. Since then, there have been a couple of times I've consumed gluten accidentally and each time I had stomach pain or digestive issues. I think I'm undisgnosed celiac! Is it worth eating gluten again to get a formal diagnosis? 

Yes, if you will have a hard time for the rest of your life going without gluten on a "maybe". Many people can't be 100% compliant without a dx.

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    • Gemma......if you are ever in London, please check out this place.  It is a 100% gluten free bakery and the food is out of this world!  I can't get bread like this in the States and it certainly is worth a road trip for anyone living in the Uk, within reasonable distance from London.  It will easily satisfy all of your bakery cravings and I bet the bread freezes well. http://www.beyondbread.co.uk/
    • Celiac disease can be dormant for years til a strain/stress to the immune system makes it come out. Many of us have had this issues, your infection run in might have triggered the dormant genes for the disease if you had them. I would follow up with the testing, see about getting a full celiac blood panel if you can, you have to be eating gluten for 12 weeks daily prior to testing. http://www.cureceliacdisease.org/screening/

        If not celiac it could be another food intolerance/sensitivity I suggest keeping a food diary and tracking what you eat, seasonings, how it is cooked etc. And how you feel later. Change up our diet more and look for patterns.  Here is stuff to read up on. https://www.mindbodygreen.com/articles/are-food-sensitivities-for-life
    • Yeah , i will look into getting tested - like you say there is no harm in it . What I found very interesting is the part where you say "Later I got pains in the stomach, usually a dull ache although I could get a fierce stabbing pain there too. When I went gluten free those pains stopped. as did my chronic sciatic backache which Ive subsequently realised was probably due to inflamed tissues pressing on nerves." - I also started to get chronic sciatic nerve pain on the right side over a similar time period and am wondering if its the same kind of thing. If I could solve both those things it would be life changing for me
    • Hi ,  i was thinking that an intolerance and allergy were about the same thing really but sorry if im wrong. I know celiac is an autoimmune disease but was thinking that is different again, more serious and was erring on the side of my possible issue not being that but more of the intolerance type. Clearly im just guessing though and dont know about this stuff , hence the posting for advice, The problem with trying to get tested is that in bolivia there are very limited tests and doctors are unreliable so you have to rely on yourself to certain degree. I have heard of a test here and was planning on looking into that but it made sense to try to get some opinions and advice online first so Im in a better position to understand if any tests here are actually reliable enough. I dont think there is an issue with travel parasites etc as I have already taken the medications thats would kill them like a course of albendazol and praziquantel and that was after a 2 week anti parasite cleanse. That did feel like it got rid of anything and the only issue I have been left with is this pain as described.
    • Karen's point about parasites etc is a good one. They can cause a lot of symptoms similar to celiac /ncgs as you probably know.  At 11 I had my appendix removed following pain in the lower right side of my torso. On waking up the surgeon told me that it was actually ok, when I asked what caused the pain I think they said it was probably glandular - they didn't know. Later I got pains in the stomach, usually a dull ache although I could get a fierce stabbing pain there too. When I went gluten free those pains stopped. as did my chronic sciatic backache which Ive subsequently realised was probably due to inflammed tissues pressing on nerves. I would ask the Bolivian doctors if they can get any celiac blood testing done. The standard ttg may not be beyond their labs. can't hurt to ask? Give your diet my guess is you've had a lot of gluten for a long time. If its an issue for you expect a bumpy ride when removing it.  Best of luck!  
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