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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 FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) 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 Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

DH Photo Bank
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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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