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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Vh1 Behind The Music Kid Rock
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Ok, so I'm watching behind the music on Vh1 about Kid Rock and they bring up Joe C, and how because he had Celiac Disease it stunted his growth and then the reason he died was because of Celiac? I'm confused... The only thing that makes sense to me is that he knew what was wrong, but was either not on the diet at all or unaware that beer and certain alcohols contained gluten, or somehow had been told there was no cure and therefore didn't do anything about it...

It's sad. I was THRILLED to hear Celiac mentioned on Vh1, but sad to think that this young man actually died from it. And I thought MY growth was stunted... I'm the shortest in my family at 5'1", but Joe C, he was shorter than my 6 year old. And now I'm concerned that anyone watching that hears about him dying from Celiac, but doesn't understand exactly what it is and what causes it... and then if they were to find out they have it too, would they think OMG this is going to kill me???

I mean, crap, I literally was dying before my dx, but since my dx I am healthier than ever, and I just can't see someone who is taking care of their diet to actually die from this. He had to not be following the diet.

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Ok, so I'm watching behind the music on Vh1 about Kid Rock and they bring up Joe C, and how because he had Celiac Disease it stunted his growth and then the reason he died was because of Celiac? I'm confused... The only thing that makes sense to me is that he knew what was wrong, but was either not on the diet at all or unaware that beer and certain alcohols contained gluten, or somehow had been told there was no cure and therefore didn't do anything about it...

It's sad. I was THRILLED to hear Celiac mentioned on Vh1, but sad to think that this young man actually died from it. And I thought MY growth was stunted... I'm the shortest in my family at 5'1", but Joe C, he was shorter than my 6 year old. And now I'm concerned that anyone watching that hears about him dying from Celiac, but doesn't understand exactly what it is and what causes it... and then if they were to find out they have it too, would they think OMG this is going to kill me???

I mean, crap, I literally was dying before my dx, but since my dx I am healthier than ever, and I just can't see someone who is taking care of their diet to actually die from this. He had to not be following the diet.

i think someone said on another forum about celebrities with celiac that he had the type that didn't respond to the diet... not sure though. but i'm pretty sure he drank a lot of beer and alcohol, and probably not the gluten-free kind. i mean, he was in Kid Rock's band.

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Yea, I'm guessing that he wasn't 100% on the diet, which we all know might as well be nothing. So if he was having a beer here and there, or just eating the meat and cheese out of an already-made sandwich, he was probably getting a lot of damage. You have to be really strong about insisting on what's required. If your friends don't get it, or hassle you about it, I'm sure it's really easy to just not make a big deal about it. And being on the road, eating fast food at least sometimes, I'm guessing it was next to impossible, even if he was trying to be really stringent about it.

Nancy

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I heard (from a completely unreputable source, so if it's wrong...you know) that he had other health problems caused by celiac (untreated celiac before he was diagnosed) that made it difficult for his body to respond to the diet.

I can't remember what forum I read it on, and it was just what a poster said who "knew him" or whatever so it could be a big huge rumor (which I probably shouldn't have repeated) :ph34r:

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First and foremost understand CELIAC KILLS!

I have watched several family member die from this disease in disguise. What I'm learning after my journey and discovery, reading some of the latest books out since 2004 that with celiac disease, autoimmune diseases, some-of-us commonly over time develop secondary food intolerances and even allergies. Doctors are re·al·iz·ing it's an even bigger problem. Things they told us were good for us; (like soy) now is bad. And other issues factor into getting better like our mainstream drugs are cross contaminated from many of the dyes used in pills.

It, celiac disease and going on the gluten free dairy free diet was a-cake-walk for about 4 or 5 years. Then all of a sudden It grabbled ahold of me. It gives you a false sence of hope, now I'm fightening again.

Everyone is different in where they are at in the process of the disease. Joe C struggled with it. And yes, living like a rock-star isn't easy. What they make look so easy and cool.... is very hard on their bodies livin on the road touring. Most of the bands; KID ROCK does, they have managers and staff (w/a doctor) that travels and cares for the stars every needs while on tour. But forget that, it doesn't mean a thing, most docs still don't get celiac disease, or really know how to treat it beyond handing us a few pages about avoidance. Or treating the symptoms.

Here are a couple links

www.eonline.com/ here is another and Kid Rock had Joe C's story on his site some place. I read it.

nini -- And you're so right about being thrilled celiac disease is on VH-1. Me too! People are getting educated about celiac disease and that's great. It gets people talking about it from the TV show "House" and articles in the NY Times to its in granny's "Readers Digest". Hope they re-run the show, I'd like to see it.

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I know that undiagnosed Celiac can kill, but what scares me is the "diagnosed" aspect of this story. If he KNEW what he had and it still killed him, the question is why? And the only logical answer is that he wasn't 100% gluten-free, which is like not being gluten-free at all...

I very nearly almost died from this disease... I was having SOOOOO many complications from it before my dx, that my Dr. said that I was so close to dying that I had no choice but to start the diet IMMEDIATELY, no cheating ever and I did start getting better. I still worry that I did too much damage to my body before my dx, I too drank A LOT of beer in my early 20's (well hell, throughout my 20's) and ate a lot of gluten filled foods. My diet was full of them. No wonder I was so ill.

I'm just thrilled that Celiac is getting mainstream attention. And I was just shocked to hear it mentioned more than once on Vh1 as the cause of Joe C's short stature and his death.

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He had a rare form of the disease, refractory sprue. It doesn't respond to a gluten free diet. The only medical treatment is long term corticosteroid use to control the imflammation, and unfortunatly that leads to brittle bones, short stature, weight gain, a round appearance to the face (called "moon face" by doctors - thanks Doc, thanks alot <_< ) and a host of other problems - and that's on top of the celiac.

If I had been him, I'd smoke, drink and hang out with rock stars too. B)

Here's a link. . .

Refractory Sprue

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thanks...

and now today I heard that Heather O'Rourke (the child star in Poltergeist) also died from complications from Celiac. That she had been misdiagnosed with Chron's and then died from a septic infection from a bowel blockage caused by a genetic defect and aggravated by undiagnosed Celiac. Has anyone else heard this? She died at 13.

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thanks...

and now today I heard that Heather O'Rourke (the child star in Poltergeist) also died from complications from Celiac. That she had been misdiagnosed with Chron's and then died from a septic infection from a bowel blockage caused by a genetic defect and aggravated by undiagnosed Celiac. Has anyone else heard this? She died at 13.

all I can find that's "official" is that she died of "acute bowel syndrome" which when I google that I get IBS, which IMO is BS. Maybe she did have celiac maybe she didn't, maybe I don't google properly :P I will keep looking though.

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It was very briefly mentioned on some tv show about child stars... don't know what channel, hubby was flipping through the channels and we caught the tail end of that story.

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thanks...

and now today I heard that Heather O'Rourke (the child star in Poltergeist) also died from complications from Celiac. That she had been misdiagnosed with Chron's and then died from a septic infection from a bowel blockage caused by a genetic defect and aggravated by undiagnosed Celiac. Has anyone else heard this? She died at 13.

I often wondered what really happened to that little girl. Not to change the subject but -- Didn't a few people died on that movie? Poltergeist Deaths Here is info.

In my study of celiac disease they say many unexplained deaths (on the operating table) like my grandmother having a rountine gall bladder operation die because of unDX'ed celiac disease.

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    • Hi Stephanie, I'm also from the UK, I've found this site more helpful than anything we have!  As already mentioned above, in my experience it could depend on what and where you were drinking. Gluten free food and drink isn't always (not usually) 100% gluten free as you may know, maybe you have become more sensitive to even a trace of gluten that is probably in gluten free food/drink. Is it possible you have a problem with corn, particularly high fructose corn syrup that is in a lot of alcoholic drinks? This was a big problem for me and the only alcoholic drinks I can tolerate are William Chase vodka and gin. I contacted the company last year and all their drinks are 100% gluten and corn free, made the old fashioned way with no additives, so maybe try their products if you like the occasional drink and see how you get on. If you drink out, not many pubs sell their products but I know Wetherspoons do and smaller wine bars may too. l was never a spirit drinker but I must say their products are absolutely lovely! Very easy on a compromised gut too considering it's alcohol. I second the suggestion on seeing a natural health practitioner. I've recently started seeing a medical herbalist, as I've got nowhere with my now many food intolerances since going gluten free last year and I've noticed a difference in my health already. 
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