Does Dermatitis Herpetiformis = Celiac?

[ItchyMeredith]

I just got a Dermatitis Herpetiformis diagnosis. Does that mean I have celiac....or I MAY have celiac? I can handle the rash. It itches but it is not that big of a deal. Cutting out gluten wil be a bigger deal but I don't want to cause internal damage by eating gluten.

Any ideas?

[jerseyangel]

I just got a Dermatitis Herpetiformis diagnosis. Does that mean I have celiac....or I MAY have celiac? I can handle the rash. It itches but it is not that big of a deal. Cutting out gluten wil be a bigger deal but I don't want to cause internal damage by eating gluten.

Any ideas?

Hi Meredith and welcome--looks like you've come to the right place!

Yes, a DH diagnosis means you have Celiac. You need to follow a gluten-free diet for life.

It's not really that hard once you get the hang of it--feel free to ask any questions you have and be sure to read through the forums for food ideas, how to de-gluten your kitchen, eat out, deal with others on the subject, etc.

I don't have DH myself, but I'm sure that when others who do see this, they'll weigh in on the particulars.

[tom]

Yes Meredith, it is daunting at first.

But it doesn't take that long for it to become second nature, like not eating dirt or an old piece of cheese found in a forgotten mousetrap.

And it won't take a LOT of reading here to see the symptoms u can prevent. Besides the general misery of the usual GI issues & brain fog & head and body aches and pains, there are very serious potential complications throughout the body.

Around 6 yrs after being unable to work, I was sure that continued decline would, in months, necessitate institutionalized care for a number of reasons.

Eating gluten-free will get easier week by week.

Read some of the personal accounts here further motivation. (I dare ya lol)

[CarlaB]

If you have DH, you are a confirmed celiac. You have an autoimmune response from eating gluten.

Eating gluten-free is very challenging in the beginning ... almost seems impossible. After a while, it's second nature. I've literally replaced everything with a gluten-free version.

Keep reading, you will learn a lot.

[SunnyDyRain]

After only being Gluten free for 3 monthes, the only thing I don't like about eating Gluten Free is my lack of options when eating out. I hate looking at the menu and trying to think what is safe. Other than that.. gluten free is a breeze. Now the other food intolerances that I have tacked on... that is a different story.

Welcome and good luck! It's a learning curve!

Oh! Be sure to check all your personal products (shampoo, condtioner, makup, toothpaste) for gluten! That's a newbie mistake!

[ItchyMeredith]

Thank you all for your feedback.

I live only 2 blocks away from a Whole Foods store and was delighted yesterday to find all of my options. I am a strict vegetarian and have been since 1991 so I am accustomed to reading labels. I feel optimistic that I CAN DO THIS. It is going to take a while to get it down though. I was just reading that my shampoo- WEN by Chaz Dean (which I love) has wheat protein in it! My antiperspirant has wheat also! WTH?

Anyway, thank you for your help. I am going to explore the site and see what products are recommended.

Meredith

[jerseyangel]

Meredith,

Two things, well really three, that I get at Whole Foods and like very much are crystal deodorant, and ShiKai Everyday Shampoo and Everyday Conditioner.

[JoyfulM]

One cool thing about Whole Foods:

On their website you can choose which Whole Foods is closest to you, then select dietary restrictions (gluten for us) and it will give you a PDF file of all the gluten free products at that store. I was just diagnosed last week, and I was so excited when I found that out!

[lovegrov]

I know others have already said it, but, yes, you do have celiac. I had DH for more than 20 years without realizing this and then ended up in the hospital for 11 days and off work for 10 weeks. You don't want to end up this way. My dad also had DH and when we got all first-degree relatives tested (please do this with your family) my dad was positive on all at age 70.

richard

[wowzer]

All I know is that I don't want to itch like that again. I can think of at least 6 bouts of the most horrible itching. I even landed in the hospital one of the times. I was covered from head to foot with a rash. They said it was an allergic drug reaction, but they didn't know to what. I have had many weird reactions to medication and wonder could it have to do with malabsorption? I have a little sister that was diagnosed at a year old. I can remember my father having surgery then getting a blistery rash. He was always in the bathroom. He was never diagnosed. I also wonder about my Mom. She has had some blistery itcy outbreaks. She won't get tested. We got it from somewhere in our family. To me a gluten free diet is a small price to pay to avoid symptoms.

[Franceen]

I second all that's been said so far! (Yes, you should look at your creams, lotions, etc - but I don't seem to have a problem with them - but after checking I discovered that most of what I used doesn't have gluten anyway - I was LUCKY!).

Going gluten-free will be a pain at first - especially if you have to eat out a lot - or if you travel a lot. I have a pretty high level job in the gov and end up at luncheons, dinners, buffets, conferences etc where I don't get to choose the menu and that is very frustrating. I always carry some food with me! I've been called "the bag lady" because no matter where I go I have my purse and some sort of FOOD BAG!!

Sometimes it's embarrassing, but I live and so do all of "them" (those that poo-poo my condition).

Don't get dismayed by the "but just a little won't hurt you????" "Or come ON, my mother made this just for this party/lunch/dinner/etc".......

I have a copy of the annual "Triumph Dining Guide to Gluten Free Restaurants" (also in my bag) - and I make people read through it to decide where to eat (when there is a choice).

After a while it becomes routine and just "that's the way life is".....

But always remember: It is a disease that has a NON-MEDICAL treatment!! No radiation, no Chemo, no knife, no shots, no pills, no inhalers, no drugs, no prescriptions, no Novocaine!, no drill, no insulin! IT'S JUST FOOD!!!

Keep up the spirits and when the diet starts making a big difference in how you feel and look, it will get a LOT easier!

[lovegrov]

Easy answer. Yes.

richard