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Need A Little Advice, If You Will...

jools

By jools
in Coping with Celiac Disease

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jools Newbie
jools
Posted

I was recently self diagnosed with Celiac. Around 4 years ago I was under-diagnosed by a doctor with IBS. (After having gone to at least three different gastros around that time) I just decided to "deal" with all of my stomach problems, since I was told that nearly every woman my age suffers from IBS and that it was not a big deal.

Then on came a new symptom. I began breaking out with an itchy rash on my face. At first I thought it was some form of acne but was told by my esthetician that it was a rash and it looked like an allergic reaction of sorts.

I started to monitor everything - from the food I was consuming to the soaps and detergents I was using (bought all scent free / sensitive skin products) and the rash remained to no avail. Sometimes it was worse than others, but for the most part it would not fully go away. A friend told me that he knew someone with a wheat allergy, so I tried cutting out that for a few days. I still had the rash although it wasn't as bad, so I thought that wheat was not the culprit. I ate a sandwich that day and immediately my body was itchy and I felt rather ill - it was even worse then ever before, in fact. I was starting to think that it was indeed the wheat and happened upon someone who had Celiac who suggested that I was as well. I began reading up on the disease and started to follow the strict gluten-free diet. My symptoms had miraculously disappeared for the most part, aside from the occasional accidental cross-contamination or consumption. I am learning every day to cope with this, since the disease hadn't been officially activated until the 3rd decade of my life (I am 29 years old). The only thing that makes me a little worried is that now I know I have this, I don't have medical insurance. I have since switched jobs and the new company is small and just getting started. Until I am in a better place to get properly tested and checked out on a regular basis, I worry about the other more serious symptoms and diseases that can occur in conjunction with this disease. So I wonder until then, if I stick to the diet as strictly as possible and take the appropriate vitamins, am I mostly safe? Also, I consulted a local health food store owner, who is quite knowledgeable as well as pretty helpful - but he sold me some products that I am now a bit wary of (since he is not a physician). One of the products is called "Intesti-New" and it is made by: Renew Life, a company that specializes in digestive health...this product is to be taken twice a day and is supposed to promote intestinal lining and repair. Does anyone know about this product or can you recommend something else I can use in its place?

Sorry for the novel, I am new to this forum as well as the Celiac community and I guess I just needed to vent... ; )

Any advice would be greatly appreciated. Also - any Celiacs living in or around NYC?

Thanks again...and health and happiness to all!

Jools

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Guest jhmom
Guest jhmom
Posted
So I wonder until then, if I stick to the diet as strictly as possible and take the appropriate vitamins, am I mostly safe?

Hi Jools and welcome to the board! THis is a great place to find support and a TON of information! To answer your question above, the only treatment for Celiac / gluten sensitivity is a strict adherence to a gluten-free diet for life! As long as you are gluten-free you are ok, if you continue to have GI problems then I would see a doctor as soon as possible. Of course if you begin to have severe problems such as bleeding, etc then I would see a doctor immediately!

Also you have to consider when retesting after being gluten-free you will have to go back on gluten for the testing, in my opinion if you improve on the diet obviously you have a problem with gluten and some doctors will accept an improvement on the diet as a diagnosis!

Good luck to you & I hope you are feeling well :D

jools Newbie
jools
Posted
  • Author

Thanks, Stacie. That makes me feel more comfortable about the whole thing. Luckily I do not have any severe problems with the exception of a diarrhea attack for which I carry my Immodium Advanced around all the time. The most annoying reaction for me is the itchiness - I guess I have dermatitis although the only place the rash actually shows up is my face. : (

Thanks again,

Jools

lovegrov Collaborator
lovegrov
Posted

You will be perfectly healthy as long as you stay gluten-free. If the stuff you are taking is a probiotic I'd keep taking it for a while, as long as it's gluten-free. The "rash" could be DH. I'd avoid iodine for a while as well as being gluten-free. If the rash is DH, it will slowly disappear.

richard

jools Newbie
jools
Posted
  • Author

Thanks, Richard. Yes, I believe the rash to be DH as well, I've done a lot of research on it as well since it was the symptom that prompted my investigations to begin with. It doesn't look as bad as a lot of photos I've seen in pictures (knock on wood) but it can get really red, burn and itch like crazy if I accidentally become contaminated.

The health food store owner also gave me some trial plant enzymes and these Carbo pills that are supposed to help make accidental cross-contamination easier to cope with. Does anyone know anything about that? (Anyone else on plant enzymes, etc...)

Also to anyone who has a Whole Foods near them, the one in Chelsea (NYC) has a list of all of the gluten-free products they carry in their store. I imagine that the other stores have a list as well, if not go to Customer Service desk and ask them to get a copy!

Health and Happiness to all...thanks for your support.

Jools

celiac3270 Collaborator
celiac3270
Posted
Any advice would be greatly appreciated. Also - any Celiacs living in or around NYC?

I Live in NYC!!

Hi Jools,

I know of a lot of health food stores, but they're all uptown so they might not be helpful for you....there's also a Fairway's (big foodstore-type thing) at 74th and Broadway...go to the 2nd floor -- they have a lot of gluten-free food and its pretty inexpensive because you're not getting it from a healthfood store :) . PM or e-mail me if you have anymore questions or want food ideas or anything....I might be able to offer some advice or help since I live in NYC, also.....

-celiac3270

bratcat Apprentice
bratcat
Posted

I too have that rash.I have had it for 8 months.Not until yesterday did I learn why.That is when I was dxed with celiac disease.My rash was on my elbows,knees and at the base of my spine and on my buttocks.I nearly went crazy with the itching.For the last month I have been so sick,I practically stopped eating.A week ago I finally went to the ER for the rash as my dr did not know what it was.Some Lotrosone cream took care of it but it will still flare up if I eat the wrong thing.Then yesterday my digestive specialist told me where it came from.

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  • 3 weeks later...
jools Newbie
jools
Posted
  • Author

Thanks for the tips, guys. celiac3270, I didn't know that about Fairway..nice one!

Bratcat - since you get the rash, do you notice any pains in your joints? I more recently (in addition to the rash) have been getting weird, needle-like pains in my joints...weird.

Jools

dana-g Newbie
dana-g
Posted

jools--Check out celiacchicks.com. They are based in Brooklyn and they have get- togethers and a great website.

Dana, gloriously gluten-free

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