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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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Biopsy Negative For Dh
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14 posts in this topic

Biopsy came back negative, which did not surprise me since every other celiac related test has come back negative. Apparantly, being itchy and having my guts in knots is perfectly normal.

He says there could be a false negative and prescribed me two months of Dapsone. The idea being if the rash goes away, it's positive for DH. If rash persists, it's not DH.

Dapsone scares me, frankly. I already have trouble keeping my iron up and am near the end of training for my first marathon. I don't need my hemoglobin being messed with right now (or ever, really).

I cut out gluten 8 weeks ago and have noticed an improvement in my skin. Still itchy but less intense and no longer burning/stinging. My belly is so much happier without gluten, too.

So, Dapsone or no Dapsone? I'd love to know definitively if it's DH, but I'm concerned about the potential cost to my health. Or should I just continue on with the gluten free diet and see what happens?

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Have you eliminated iodine from your foods and supplements? We need to as iodine will keep the antibodies active. Personally I would do that first and also make sure that gluten ingredients are eliminated from all personal care products. It can take some time for the antibodies to leave the skin and even a tiny amount will reactivate them so do be very strict with the gluten avoidance.

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Dapsone worked great...for two weeks.

Then I broke out all over head to toe with raised red pinpoint dots. So no Dapsone for me. You are right to be concerned. Make sure and do the blood tests if you do take it.

I was strictly gluten free for 4 months with minor healing...and flares. Only when i eliminated iodine strictly did I start to heal. It took three full months. I saw Endocrinologist today and asked him about limiting iodine since we need it in our body. He said that kind of temporary limiting...even for several months...would not be harmful as long as you add it back when you heal. So I feel good about what I did. I was concerned it might hurt the thyroid.

You are very active, so it might effect you more...limiting iodine. I know we need it. But you will have to figure out how long to avoid it for you. If you keep on eating iodized salt though, you may still have problems like Ravenwood said. Strict iodine and gluten avoidance will work, but any tiny accidental cross contamination or iodine intake will cause a reaction. At least it does for me. I pay for it for several weeks with sores.

Dapsone DID help the Dr. to believe I had DH. The pain and itching went away during the medication. But it wasn't really worth it to me...I already knew I had it. Hope you heal fast.

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I had read about the iodine connection here, but kind of dismissed it. I'm having more trouble wrapping my brain around no dairy and eggs than I did about removing gluten from my diet. I never put salt on my food, and mainly eat whole foods, but seriously, the dairy and eggs will be hard to give up. I did notice that my iron supplement has iodine in it, too.

Does the salt listed in any processed food always mean iodised salt? I absolutely need salt as a runner, just not the iodine.

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Kmag, my experience is somewhat different. I haven't used Dapsone or avoided iodine. My lesions are almost healed and don't sting or itch much any more. But it has been many months.

The advantage of doing it 'cold turkey' if you can is that you will become very aware of those 'marginal' foods that contain small but significant amounts of gluten.

You won't risk the side effects of Dapsone, or the health risks of a low iodine diet.

I think the choice of which strategy to follow depends a lot on your personal circumstances, how you assess risk and how much unpleasantness you are willing to tolerate. As well as your specific reactions which will vary from the rest of us.

Best wishes.

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I wondered about processed foods having iodized salt. Sometimes I reacted to them. So I didn't eat them while I was trying to heal DH. I heard organic dairy doesn't contain as much iodine. Here is what I figured out about dairy and DH...If a product has carageenan in it, my DH reacts. Carageenan is made from seaweed and seaweed contains iodine. So organic that does not have carageenan should be ok if you can tolerate dairy. Eggs sometimes made me react, sometimes not.

You can use all the salt you want if you use uniodized salt. It is sold right next to the iodized salt. Sea salt made me react though and the article on DH here on this site says not to consume sea salt or seafood. Indeed, they both made me react with activated lesions until I realized that it really is true that the iodine needed to be limited or eliminated for a short time.

Shellfish is the worst for my DH. Oh my God. I think freshwater fish is supposed to be OK, but not seafood it you are trying to limit iodine.

It is a real puzzle figuring out what activates your DH. Asparagus also has a high iodine content.

I do think iodized salt is used in processed foods, like canned goods, because it is easily obtained.

Just start trying things and eliminating and most importantly be certain to eliminate all traces of gluten because it is awful for DH...even tiny CC can cause rash for weeks.

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I think, in the US, that processed foods always have iodized salt. I vaguely think that's a federal reg, but could be wrong. Canning salt is always w/o iodine, and I believe some kosher salts also do not have iodine.

Fake milks aren't that bad for cooking, or on cereal.

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Biopsy came back negative, which did not surprise me since every other celiac related test has come back negative. Apparantly, being itchy and having my guts in knots is perfectly normal.

He says there could be a false negative and prescribed me two months of Dapsone. The idea being if the rash goes away, it's positive for DH. If rash persists, it's not DH.

Dapsone scares me, frankly. I already have trouble keeping my iron up and am near the end of training for my first marathon. I don't need my hemoglobin being messed with right now (or ever, really).

I cut out gluten 8 weeks ago and have noticed an improvement in my skin. Still itchy but less intense and no longer burning/stinging. My belly is so much happier without gluten, too.

So, Dapsone or no Dapsone? I'd love to know definitively if it's DH, but I'm concerned about the potential cost to my health. Or should I just continue on with the gluten free diet and see what happens?

I have been gluten-free for 1 1/2 years and my DH is slowly going away. I am on 5 different creams to treat the rash. Dapsone is one of those creams. It really helps! Maybe you could try a cream instead of the pill? Just a thought.

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Thank you for all your responses. There really is a wealth of information to be found here.

Almost 10 weeks gluten free, though the other day I made tuna salad for my son using a CC jar of Miracle Whip and licked the spoon afterward. Days later I am itchy as hell. Seriously, that minute amount can do that?

I was thinking I may try the Dapsone after the marathon is over and see what kind of response I get from it. If it clears the rash, then I know it's DH and I'll quit taking it and continue gluten free forever. The dermatologist did not care about doing regular blood work while on Dapsone, so I'll get my GP to do it. I work in a clinic so it's easy enough.

For anyone who has taken Dapsone, I'm curious how quickly it worked for you?

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Hi,

I tried Dapsone (25mg/day) and got relief from the intense itching of my rash in about three days and the sores started to heal because I wasn't scratching them. I was so excited! I was still getting a few new little blisters so the doc started gradually increasing the dose until I was up to 100mg per day. At that dose the rash was under control, but I developed bad side effects so discontinued the medication. When I discontinued, the rash came back with a vengeance. I think it would be okay to take it for a week or less as a diagnostic tool, but be prepared for a possible flare when you stop the med.

I have tried the topical Dapsone (Aczone)and it doesn't work for me. Very expensive.

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I tried Dapsone for two weeks. The first week was great! Immediately stopped the stinging and burning rash...though the sores were still there. By the end of the second week I developed an all over body rash that was raised red bumps and it was awful and took 2 more weeks to go away. I immediately stopped the Dapsone. Ugh

Yes, that minute amount can "get" you. It gets me every time I make a mistake. Then the rash will flare for few weeks. Ugh.

Hopeful is right that the DH will flare on stopping Dapsone. It was really irritated.

Have you figured out if Iodine causes you to react? Did you eat any of the tuna? Tuna causes me a reaction every time...still....after 7 months gluten free. I think it is the iodine. But who knows. Please post anything you learn about controlling your rash...

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It sounds like side effects are pretty common with this medication, unfortunately. Not really looking forward to a flare-up if it happens, but whatever.

Yes, I did eat some tuna with the mayo. I never do think about the iodine part of the equation, and so far haven't done anything to figure out if that aggravates the rash at all. I just keep hoping that not eating gluten will make it magically disappear.

The only I know about controlling the rash is if I don't scratch it's better. I'm sure you'll all find that very helpful - Haha :)

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Mayo bugs my rash because it is made with eggs which are high in iodine. If I ate tuna + mayo I would really blister!

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For me, the equation was always that the iodine caused the DH to worsen even more than the gluten. Twelve years before I ever discovered I had celiac, I made the connection to iodine when it came to the itching blisters. I found out that if I avoided iodine entirely, I could control the rash. Of course, 12 years later, I discovered the true cause behind the blisters and have been rash-free ever since. Unfortunately, from avoiding iodine for 12 years, I ended up being hypothyroid....and the medication contains iodine. However, as long as I avoid gluten, the blisters haven't returned. I do, however, have a chronic rash across the upper part of my back, and I've been assured that I will have it for the rest of my life....all because of the iodine.

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    • Hello everyone! I have been following the forum for some time now but this is the first time I registered and decided to post as I need advice from someone who has experience with DH. I little bit of history...I was diagnosed with Hashimoto's few years ago. I started following gluten free diet which I realized was not very strict at that time meaning I stopped consuming gluten, wheat, etc. but I did not exclude the foods that were marked as 'possibly cross-contaminated with gluten'. I thought that is not so important at that time. Yet I have seen instant relief in my thyroid symptoms and my antibodies flew down every month. I also stopped consuming dairy at that time. Then, after about 10 months I was craving ice cream soooo much that I told 'ok, I will just have it one time'. Bad decision. Needless to say I ended up consuming ice cream and the wheat cone they put it in many times after that and my antibodies increased, too. At that time I noticed strong headaches, lack of attention, and itchy rash that appeared on my face. I started following strict gluten free diet again, the rash started to clear up veeeeery slowly, and few months later I finally decided to visit a gastro to get tested for celiac disease. Another mistake! She told me I need to introduce gluten again to get correct results. So I did it. I had another flare up and the worst headache ever I got in my life. I added gluten to my diet for 2 weeks only but I felt I could not continue this diet so I called off my next appointment. The gastro told me I could get a DNA test to know if I am career of the HLA DQ genes. I shall note that at that time I have been already tested for food intolerances and gluten came out as positive on that panel. Dairy was fine even though cow products were on the border (and I didn't consume much cow dairy at that time, mostly sheep and goat). I did a test with 23andme and had the results analysed through one of the sites that offer additional dna analysis services. I had one of the genes (DQ 2.2). I started a strict gluten free diet and this time I made sure I did not consume any cross contaminated foods as much as I could. This resulted in slow healing of my face rash and in about 9 months my face has been clean! I couldn't believe it. I was finally able to go our without foundation outside and everyone complemented my clear skin. I never had any specific gastro symptoms I shall say so again I was confused if gluten might be the culpit. I did introduce gluten for few weeks again and finally got blood tests done which, of course, came out negative (doctors said I shall consume gluten at least 2-3 months to get it accumulated). My face was flared up again but I was so confused and I was no longer sure if it is gluten, dairy, else....sigh...I started strict gluten free diet again.  Then, I went to a birthday party two weeks ago and on the next day I woke up with very itchy rash on both on my hands. It basically was a very similar pattern on both hands starting around my wrists and spreading to my elbows. I have very sensitive skin and I first thought this is an allergic reaction but I had no clue to what it might be - I did not change any cosmetics, soaps, other detergents, no new jewelries (I have nickel allergy), clothes...nothing new. Yet I started with the usual anti-allergic treatments to find out the rash didn't disappear nor become much better within few days as it usually happens when I have a true allergy. Instead watery blisters appeared and the itch was awful especially approaching the evening. The blisters were small, then they grouped into larger blisters, those blisters that 'became better' turned into a very red scale marks. Again doctors said it is allergy but it responds very bad to those treatments (almost not at all) and even now, two weeks later I still have some blisters left, my skin still itches and it has very strange red color. The rash is just covering smaller area now (not to my elbows) but it is still there..argh! Anyone who has dealt with DH (Duhring's disease), please, advise does this rash resemble what you get with Duhring's: http://tinyurl.com/yc2g2oep, http://tinyurl.com/y9b5g3vk? I start wondering if I could have been glutened on the birthday dinner and with all the dairy around (iodine!) it might have just been an added extra to provoke the rash. I am sorry for the bad photos, I did my best to take them holding the phone with one hand. I also start wondering if what I had on my face might be related to DH. The rash on my face never had those watery blisters, it was more like hives, very very itchy. I might try to find some old photos of my face rash, too. Shall I seek further diagnosis and speak about DH with my doctor? I am so confused as to how to proceed. I even did a iodine patch test last night but my skin became very red and itchy within few minutes of applying the patch so I had to take it off after an hour. My heart was racing for few hours after that and I can still feel the place the patch was applied to as extremely painful.  
    • I really don't prefer to eat gluten longer.  Every time I eat it, I think, "I'm destroying my villi with every bite".  I'd like to eat it as a little as possible before the blood test.  I received the order for the test in the mail today, so I can that at any time now. 
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