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Being Young and Celiac

Celiac.com 06/06/2012 - Celiac disease is an autoimmune disease caused by a reaction to the component of wheat, barley, and rye called gluten and can affect the entire body. Dermatitis herpetiformis (DH) is a blistering and extremely itchy skin rash. It’s usually symmetrical in shape and is most commonly located on the elbows, knees, buttocks, and upper back. It’s common for people with DH to have rashes appear in the same spot, and they can either be consistent or come and go.

Photo: CC -- PalliativoIt is hard enough being a young adult, having celiac disease is the icing on the cake, and having Dermatitis Herpetiformis is the cherry on top. So how is it that I have been able to so easily make the transition from eating gluten on a daily basis to being 100% gluten-free for over six years now? Simple: by getting educated.

When I was first diagnosed it was very hard for me. I didn’t know what had gluten in it, what body products to use, etc. My mother Tina Turbin, founder of GlutenFreeHelp.info, gave me some great advice. She told me to do my own research. So I set off to get a real understanding of celiac disease and DH. I was going to have to live with them both my whole life so I felt it couldn’t hurt knowing more about them.

This was the best advice anyone could have ever given me. With the broad knowledge of celiac disease and DH available these days, I was able to read so much information and get a real grasp of the subjects. I finally was able to easily know which products would have gluten in them and what the gluten actually did internally to my body.

I really made being gluten-free a priority in my life. I made sure this priority was known among my family and friends as well. They all were more than willing to help. Now, whether going out for brunch with friends or traveling, the people I surround myself with are always picking places where I will have an easy time following my gluten-free diet. Just yesterday, a friend of mine let me know she picked a place for us to eat that would prepare any of their pasta dishes with gluten-free pasta.

So, my advice to you is this: First, do your own research. There are so many people out there with great advice and so much information to share. The more we join up with others, the easier it will be. Secondly, inform the people you are surrounded with of your dietary needs. Too many people think being gluten-free is just a fad when in reality celiac disease and DH are extremely important and should not be made fun of.

Last, enjoy life. Living gluten-free can actually be quite fun. The food is delicious and the health benefits are outstanding. Being gluten-free doesn’t have to cause you stress. In fact, by following these guidelines, gluten-free living can become quite rewarding.

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6 Responses:

 
TysonHolly
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said this on
07 Jun 2012 5:53:48 PM PST
I worry that your anecdote of the pasta restaurant making you gluten-free pasta spreads a bit of misinformation, of which I've found the hardest to get people to understand. Gluten-free pasta is great, but what about the counter tops, pots and pans, strainers, handling, etc? This seems to be the hardest concept for my friends and family to understand. I think we can help our loved ones, and ultimately ourselves, by being consistent and educating them on the topic of cross-contamination.

 
apoppy
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said this on
11 Jun 2012 12:41:26 PM PST
I agree with TysonHolly on the comment about cross-contamination. It is not easy to keep my own kitchen gluten-free with friends and family bringing food to "share" and to eat for themselves. From donuts to buns to cookies and cake, secret ingredients and special recipes galore, there is no end to what people think is safe to bring into my home. I have only managed to eat out just a few times without having a gluten issue. I do not trust ANY kitchen but my own! Once we stayed at a resort that insured me before hand that the chef was well trained in gluten-free cooking. Yes, he was, but his staff failed me and I became very ill, ending our vacation on a bad note with a very uncomfortable trip home. I have celiac disease with severe dermatitis herpetiformis.

 
joy
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said this on
30 Jun 2012 6:16:53 PM PST
What is severe dermatitis herpetiformis? What reactions are there when you have dermatitis herpetiformis?

 
andrea lee
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said this on
11 Jun 2012 11:10:53 PM PST
Thank you for the above comment, for I wholeheartedly agree with you and find this to be the most frustrating thing when reading gluten-free websites. Cross-contamination is so important to living gluten-free with celiac disease, and makes me question any author who does not acknowledge that fact.

 
Miranda Jade Turbin
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said this on
20 Jun 2012 1:00:26 PM PST
You are totally right. In fact, I got "gluten poisoning" two days ago from cross contamination. Just a tiny bit of gluten can really make you sick. I usually ask restaurants to clean their grill, etc. when I order. If they put up a stink about it, I don't feel safe about eating there and I will leave. For the most part, I find that restaurants in my area are very accommodating.

 
Annette
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said this on
11 Jun 2012 4:59:57 PM PST
I too worry of the cross-contamination in this restaurant. I do not know where she lives, but finding a place to eat out at is, I feel, very difficult. I do not live in or near big cities and this process is daunting. I also have to disagree about the food, other than your fresh fruits, vegetables and meat. A lot of what I have bought that states it is gluten-free tastes horrible, and when the dog won't eat it, you also have to wonder what is in it. I am only two years into knowing I have this disease and I am still learning.




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