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Cd And Dh
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Hello everyone,

I am new to celiac disease and relatively new to this message board. I have been researching this disease all I can and have read numerous amounts of posts. I found that Dermatitis Herpetiformis is closely related. I was just wondering if anyone on here had that. This last winter I got a terrible rash on the insides of my knees and butt. It itched terribly and creeated a bunch of sores. There were pictures of DH online, but it didn't looke exactly the same. I did read, however, that it occurs symmetrically. I'm just curious as to if anyone had it or knows things about it that aren't on the websites. I only had that happen one time- but it lasted about a week. It never fully went away, though, because wheneve I get in the shower, I can see where it was on my knees. It is rather strange. Hah.

I was also wondering if anyone grinds their teeth and if this has anything to do with celiac disease or DH. I guess this sounds like a strange question, but I've been looking at people's symptoms and some of them seem pretty unrelated, so I thought I would give it a try.

One more thing- I found a discount grocery store yesterday, and it was chock full of gluten-free items! I found some cookies, pasta, and crackers.. ALL 99 cents AND buy one get one free! I was so excited. I just thought I'd let everyone know in case they have one near them or something. The one near me gets mostly gourmet and organic items... which is odd because I live in a rather "redneck" area. Haha.

Thank you all so much- this has been SUCH a great help for me and my family.

Mari

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I've had DH for 2 years, but was only properly diagnosed last month. I don't know how much info on DH you have, but avoid iodine at least for a while. I can tell right away if I've had iodized salt or even too much sea salt.

DH is ideopathic, it seems to have a life of it's own. In the 2 years I've had it there have been some times when it has been almost gone for several weeks, and some times when I've been covered head to toe.

"It never fully went away, though, because wheneve I get in the shower, I can see where it was on my knees."

I have that too. When I get out of the shower the places where my DH breaks out the worst are always red and slightly puffy looking, even if I don't have a bad outbreak at the time.

I grind my teeth, but I have always done it. I do find that I grind them a lot more when the itching is really intense, but that is pretty understandable.

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Wow- well, maybe I need to get checked for that. What you described sounds just like me. I went through a phase where I ate tons of pickles- I bet that is when I had that problem. Interesting... What kind of test do you have to determine if you have DH? Do you also have Celiac Disease or is that something different? Sorry to be picking yor brain, I just am happy to find someone that can answer some questions. Thank you so much!

Mari

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I was tested for celiac, I was actually not tested for DH but it's clear that it's what I have. I've actually never heard of anyone having DH but not having celiac disease, although it may be possible.

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Both our celiac disease family members are also DH. What you describe could very well be dh. It does seem to have a life of its own. I wanted to take a minute and comment about the teeth grinding. This can have long term complications if you don't deal with it now. The best thing the dentist ever did for me was to creat what is called an NIT. It is a small plastic insert that is formed to fit your teeth. You wear it at night and it keeps the teeth and jaw in place so that you don't grind. It saves the teeth, the jaw, and the muscles from all that wear and tear.

I agree with the comment earlier about avoiding iodine. I just switched to plain salt. Be very careful to ensure that you are fully gluten-free, even your deodorants, shampoos, etc. Double check your laundry detergent and carefully vacuum (or better yet, clean) your furniture and mattresses. If our non-gluten-free household members nibble and leave crackers on the furniture, then I come in and sit down to watch TV, the next day I will wake up broken out. Hopefully you are not quite so sensitive!

Good luck with it all. Feel free to ask questions, but try to search the site for your answers to the simple ones first.

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I was tested for celiac, I was actually not tested for DH but it's clear that it's what I have. I've actually never heard of anyone having DH but not having celiac disease, although it may be possible.

I think if you have DH you have to have celiac. Basically DH is a "symptom". It is a skin reaction to gluten and they say that people with DH still have the damage in the intestines. If I am wrong on this someone please let me know..this was what I perceived from the info I have got.

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Yes, Kaiti, you can have celiac disease without the DH but there are very few with DH who do not also have positive biopsies. I wonder if even those have false negatives. I know that if I get glutened, the skin outbreak will follow just after the gastro stuff. It tends to last longer, though...months off and on instead of days or weeks.

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Yes, Kaiti, you can have celiac disease without the DH but there are very few with DH who do not also have positive biopsies. I wonder if even those have false negatives. I know that if I get glutened, the skin outbreak will follow just after the gastro stuff. It tends to last longer, though...months off and on instead of days or weeks.

I know you can have celiac disease without DH but I was saying if you have DH don't you have to have celiac disease?

I have never heard of someone with DH who did not have celiac.

Biopsies can have false negatives.

I wish my uncle would get tested...he has alot of stomach problems like I did and he gets itchy bumps sometimes...but he won't get tested.

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I think the most important thing for people to understand about DH is that everyone's case is different. I have flare ups when I use iodine, but also when I am using anti inflamatory drugs, ike motrin. My worst flare up was when someone made me gluten-free cookies with oatmeal in them. My dietician told me oats were fine, but they seem to trigger DH in me (But not GI symptoms!)

I have been gluten-free for over a year now, and can hardly see where my DH used to be. My scars from the biopsies have also faded and I feel really great. Good luck!

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    • What's an " iodine test"?  Haven't heard doctors doing that to diagnose DH.
    • Hello! I've just been given my blood results and told they are highly suggestive of coeliacs but will have to wait till next month to see the gastroenterologist and who knows how much longer for a biopsy. My igA, igG and tissuetrans igA were all over 250 and tissuetrans igG was the only one that was normal. These results don't mean much to me yet but I'm told they are very high. I'm now quite fearful of how much damage I've gone to myself. I've had stomach problems for 25 years (just turned 40) and have often steered clear of too much bread and pasta for how bloated it made me feel but the symptoms were always vague and inconsistent so I kept eating. I had a couple of boats of gastro in the past few months (thanks kids) which I took a lot longer than normal to recover from which looking back may have been related. Then last Friday I had a blowout with wine, cheese, crackers, pizza and chocolate cake. I'm sure I've probably had blowouts like that before but I have never felt so sick before and am still slowly recovering. This is what finally prompted me to go back to my GP after being fobbed off so many times over the years. So I guess my question and my concern is whether there is still  chance of a false positive with levels like this? I worry what else it might be if not coeliac. I'm also worried that I may have done so much damage to myself that I will have several disorders going on! I'm also still recovering from last Friday and wondering when I'm going to feel better. I've stayed off gluten and dairy since my blood result a couple of days ago but feel like I'm allergic to food in general.  Thankyou!!    
    • Here's what the Klondike Bar makers say on the FAQ page of their website (August 2016): Are your products gluten free? Nope. They are not. We have not validated for gluten free. We do not operate allergen-free manufacturing sites, however we do have allergen management programs in all our facilities. The intent of these programs is to avoid unintentional cross-contamination of allergens between products. Our product labels adhere to the FDA’s strict regulations regarding declaration of ingredients and allergens. We do not use the terms “Natural” or “Artificial Flavorings” to hide the existence of any allergens. RECIPES CAN CHANGE. We strongly recommend that allergic consumers refer to ingredient declarations EVERY TIME they purchase processed foods.
    • I tried the iodine test but couldn't leave it on very long because it itched too much. I left it on maybe 30 minutes lol. Did anyone try it and have the same response??
    • Had my scope today. Dr said my esophagus is damaged and stomach inflamed. Waiting on biopsy results. Taking protonic and flagyl and he said to go ahead and try cutting gluten out to see if that helps. Thanks for the feedback everyone! 
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