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    Do you have questions about celiac disease or the gluten-free diet?

Rvbert0

West Virginia

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Hello

I know that Teebs is from W Va. I'm from north of Pittsburgh Pa.... .

Are you new to the group here? Any thing I can help you with I'd be glad too...

mamaw

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Guest jaimekupfner

Would really like to get a hold of anyone else in WV I feel completely alone!!! I am in Parkersburg and it is right on the OH river. I can not find any groups that are not 3hrs away HELP!!

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Sorry guys, forgot about the forum. I'm still in Morgantown, and I've luckily been able to reintroduce some gluten products back into my life on occasion. I've found that Amazon is great with their free shipping, and bulk isn't as big a problem as it's not like I'm not going to eat it.

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Hi, Rvberto,

I'm north of you, in Pittsburgh, but come down to Morgantown a few times a year for work.

If you are celiac, then you should know that studies have shown that even small amounts of gluten (1/16th of a piece of bread, for example) does cause intestinal damage even though the person might not feel any symptoms.

If you were diagnosed as gluten intolerant, you should be aware that in many cases, gluten intolerance is actually early-stage celiac; the only difference is that not enough villi damage has YET occurred to make the diagnosis easy.

In both cases, the immune system is triggered to attack YOU (joints, thyroid, pancreas, skin, etc., and, obviously, the intestines). So by eating even small amounts of gluten, you are very likely setting the stage for your immune system to attack.

I don't have obvious reactions to gluten, either. So, unlike most people here, I don't worry too much about cc, because I simply can't tell. But I don't purposely cheat, either. I had too many problems before going gluten-free, and I know too many people with irreversible damage, and too many people with fibromyalgia, RA, MS, lupus, etc., who say they feel so much worse after gluten, but never manage to stop eating it.

I've observed how bad it can get. My life is too valuable to me to risk wasting any of it on stupid gluten.

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Thanks for the tips... for me I was just diagnosed as having a mild intolerance, but never really manifested too many symptoms other than small bumps on my arms, and some bloating and stomach uncomfortableness if I ate pasta.

For me it's difficult completely eliminating gluten, as I'm in Graduate School and don't have the monetary ability to purchase all "gluten free" foods at the moment, but I've been doing pretty good.

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Hi!!!! I'm from the Martinsburg area. I know what you mean about not having support groups. That's why I like this forum so....this is my support group ;). If you are having "bumps", or a rash, especially an itchy burning rash anywhere alongside your slight intolerance to pasta, you may want to make certain that it is not Celiac. Sounds to me like it may be. A biopsy would be a good idea.

You don't have to spend a fortune to eat gluten free. Many, many foods are naturally gluten-free. Eat plenty of fresh meats, fruits, veggies. What gets expensive are the pre-made snacks....or even the flours and other ingrediants to bake your own. But then again, baking your own is much less expensive than pre-made, whether it's gluten-free or not! Besides....the money spent of safe foods is much less costly than episodes of great illness...the chance of having to deal with the other immune diseases and associated illnesses, or the damage you could be doing to your body and subsequently your overall health in the long run. I'm middle aged....have had (have) many illnesses in my lifetime that I am certain could have been avoided if only....if only.....someone had known more about Celiac disease back then. You have choices that many of us never had....please consider and do all you can to be healthy.

No more soapbox! Hope you are feeling well, and finding more of us in WV!

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Anyone in West Virginia, specifically either Charleston or Morgantown?

I'm from Wheeling and God literally gave me the word Gluten and I googled all of my son's symptoms that he has had for past 3 years and guess what? Gluten. (now try explaining to his local doctor and the guy up at Pittsburgh Children's how you discovered that gluten caused the problems)

Similar problems with my husband--my husband was actually put on a growth hormone 4 yrs ago because of low IGF-1 levels and a cholesterol drug to raise his good cholesterol levels.

My husband after looking at all of the info that I found out there (I used to be a medical librarian so I can really do some research :rolleyes: ) looked at me and said that this is you too.

All 3 of us have gluten-free for 4 weeks and the results have been truly unbelievable. No more nightsweats for my son, his unbelievable temper tantrums, moodiness, anger, ADD, gone, gone, gone!!!!

Finally I am without a period for the 1st time in 14 years!!!!!! Eczema gone, mood swings gone, extreme lethargy gone....the list goes on....

I am even typing this while wearing finger nail polish--didn't realize that the brand I'd been using contained gluten and that's why it would not stick--changed and voila' magic!

Went to tell one of my daughter's friend's mom about how the sermon hit home for me and mentioned the word gluten...her oldest daughter (now 21) has to be Gluten-free Casein-free...she then told me of a whole foods Co-op that is here in Wheeling and of a teacher at Wheeling Park that is also gluten-free.

I'm starting to look at the whole state of WV and think to myself that the entire state should probably be gluten-free. Gluten is probably the underlying cause of all of the diabetes in the state. ;)

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My DH is from WV and we go up to see his family several times a year. I LOVE Drug Emporiums Healthy Heart marketplaces! They have great prices and selection compared to where I live. My mil is bringing me a case of Now rice flour, 3 lb bags next week. She's getting these for $2.99 a bag minus a case discount. They carry so many things I had never seen in a store before---Schar is one I can remember. I spent lots 'o cash there last time. But, I generally do lots of shopping in WV. The prices on everything are so much better.

I can't help much with the restaurants. I know they have both the northern and southern chains represented there. That's one benefit of being on the Mason-Dixon line! lol There is an active group at the Drug Emporium in Barboursville. Last time I was there, they had posters about there meetings.

HTH

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I'm from the Weston/Glenville area. It can be a bit frustrating trying to stay gluten free. We don't have any speciality stores or whole foods or anything like that around here. But I've found this site really helpful with finding brand names that are gluten free. I know you can order gluten free stuff online, but we're kind of are on a rather tight budget and really need to watch what we spend. My dad thinks I've completely lost my mind. My mom was a little easier to be supportive of everything. My husband was 100 percent supportive of it all and his family as well.

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Was trying to get out of cleaning the house and spending way too much time online and somehow I learned of Schar products. From the Schar website I learned there is a pharmacy that is about 30 minutes from Wheeling in Weirton and thought I'd make a trip up tomorrow and buy one of everything before I bought in bulk from Amazon or UNFI.

Well, thinking to myself that I wouldn't have time with all of the kids activities this Friday, I checked the website again and due to a screw-up on the Schar site, ended up calling the Barboursville Drug Emporium. LUCKY, LUCKY ME :D:D My husband was in Barboursville at that moment!!!

He made a side trip and bought me a few things and then stopped in Charleston at their Drug Emporium and found the Hazlenut wafers.

He'll be home in 2 more hours and I can't wait!!!

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Was trying to get out of cleaning the house and spending way too much time online and somehow I learned of Schar products. From the Schar website I learned there is a pharmacy that is about 30 minutes from Wheeling in Weirton and thought I'd make a trip up tomorrow and buy one of everything before I bought in bulk from Amazon or UNFI.

Well, thinking to myself that I wouldn't have time with all of the kids activities this Friday, I checked the website again and due to a screw-up on the Schar site, ended up calling the Barboursville Drug Emporium. LUCKY, LUCKY ME :D:D My husband was in Barboursville at that moment!!!

He made a side trip and bought me a few things and then stopped in Charleston at their Drug Emporium and found the Hazlenut wafers.

He'll be home in 2 more hours and I can't wait!!!

Geesh I'm quoting myself. :rolleyes: About the Schar. FINALLY, FINALLY, a bread that I like. I've tried any and all out there and made my own and this is the closest to MY favorite, tasteless, bread called Wonder Bread: Schar.

DH bought the premade kind--slices were a little thick, so I just cut into and ate a sandwich for the 1st time in months with bread. Just spongy enough to chew w/o breaking your jaw and no funky aftertaste! Usually one bite of the others and I take off the bread.

Amazon has a decent deal on a 5 pack and free s&h, so I'm going to order their mixes. I just have to wait until all of the Kinnikinnick is gone (about 6 more wks) and I'll let you know what I think.

Now, the wafers with chocolate filling. BLECH. Cardboard that was not sweet. If you want the good sweet taste of a Kit Kat--stick with Glutino chocolate covered wafers.

The Hazlenut cookies that were over $4 for a dinky package. Not so bad, but only 6 (you read that right) 6 cookies in the pack; 2 inside each wrapper.

DH stopped at the Drug Emporium in Barboursville and Charleston and neither had the pasta. So, I still need to head up to Weirton to try out the pasta before I order any online.

And I while I was in the Wheeling Kroger, I saw the angel that has made their natural foods section into a phenomenal place. I told him about Schar and he was going to see if he could get it in. It all depends on their supplier. And what's nice is if the supplier does have it, he can order something just for you. That's how I got 2 bottles of the San-J wf Tamari. And no extra charges. :D

If you have the time to visit the Kroger on Mt De Chantal road in Wheeling, you might be in for a VERY pleasant surprise. They have a ton of gluten-free and casein free products. The Kroger employee told me that people travel down from Washington PA because they have so much. I know they have just as much as the Sunnybridge store in McMurray and I like it better than the Whole Foods because everything is one place. They even have frozen gluten-free like Kinnikinnick, Ezekiel, Chebe, Amy's, etc.

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I know this is an old topic but I live about a mile from Charleston and have recently gone gluten free. I'd be interesting in knowing anyone else in the area!

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I'm from Huntington, WV. I read in one of the responses someone talking about Drug Emporium... they do still have meetings, but their next one isn't going to be until Nov.

On July 31st Cabell Huntington Hospital is having the WV Celiac Conference. I couldn't find much information about it online but I'm going to be going.

Also, the Celiac Walk for Awareness is going on Aug 29th in Huntington at Ritter Park. I walked 2 years ago and was surprised at how many people showed up. This August I am going to walk again.

Finally, sometime late Oct/early Nov (the official date hasn't been released) the hospital is giving free Celiac Screenings. I'm not sure how they're doing their testing either... again there wasn't much information online.

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