8 replies to this topic

[mbland]

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

[frenchiemama]

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.

[mbland]

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

[frenchiemama]

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.

[cdford]

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.

[KaitiUSA]

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.

[cdford]

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.

[KaitiUSA]

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.

[Pegster]

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!