• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      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
0

11 posts in this topic

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.

0

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:
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.

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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:

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites
Ads by Google:


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.

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites
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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites
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.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      106,099
    • Total Posts
      928,925
  • Member Statistics

    • Total Members
      63,492
    • Most Online
      3,093

    Newest Member
    JENCRAWFORD1
    Joined
  • Popular Now

  • Topics

  • Posts

    • Thank you for your help. I have had a few colonoscopy procedures done before and the bowel preparation started working near enough immediately. This time it made me feel awful and took a long time to work its way through. Can Celiac cause constipation as well as the opposite as my bowel habits have changed a lot and prior to the bowel preparation some hard stools caused bleeding. I also was wondering is it still possible for the TTG-IGA to be positive but the EMA not? My appointment to see the specialist isn't until 24th April so feel like I have such a huge wait and so worried about still being none the wiser or any chance of getting back to normality again as I am underweight as well.  Thank you for all your help and support and do hope I am not a nuisance on here. 
    • THAT'S EXACTLY WHAT I WAS TALKING ABOUT! I used to watch anime all the time and one day my brain just gave up on me! It was so hard to get through the day not being able to do the things I love the most. When I first started to have problems it started to affect my gaming too. I have such great dexterity and suddenly my fine motor skills had gone to crap. More recently I even felt dizzy trying to type my password onto my Iphone and typing. It was god awful.
    • It's forgot how long it's been since I've been glutened, but I think it's been about a week. Most of my problems are in my right eye. They're really dry too. I went to the doctor in January to get a b12 shot and my symptoms disappeared for a couple of days, including the dry eyes. Did you ever get this really uncomfortable symptom when you turned your head in front of a lamp? Like a light shining through the surface of your eye and blinding you a bit? I hate it. I think I have a bit of nightblindness too. Most of the digestive symptoms dissappear quick. Loss of appetite, bloating, feeling full after eating a little bit, especially anything that's mostly bread, like french toast. The b12 sublinguals helped with most everything so that's why I associated it with pernicious anemia. After I started to get chest pain, I knew that it was somehow the sublingual tablets, but I didn't think it was because they had wheat in them. But yes, most of my constipation is gone, and I don't get weird stools anymore. Way back in November I would get these really dry bowel movements that were solid and looked strange, and they would fall apart when they hit the bowl. (TMI I know but this is a celiac forum) When I get glutened, I start to lose feeling in my left arm/leg and my abdomen gets hard and uncomfortable. This happened a couple weeks ago when I accidentally ate these packaged "chow mein" noodles that contained wheat, and more recently when I went out to eat at a Japanese restaurant. That was on saturday so it's coming up on a week since I've been glutened and I'm starting to feel better. One other thing I noticed is that I start to get these creases on the side of my gums. I'm not sure if they're from my teeth but they start to slowly fade away when I don't eat gluten. There's also a whole list of other symptoms I could describe like my feet turning red in the shower, these tan lines on my legs that haven't gone away since september, pale nail beds both on my feet and hands, and sinus pressure that won't let me breathe through my nose correctly. I'm not sure if I've lost any hair, but way back in the summer, some of my friends joked around about how I was "bald" and I figured it might have been because I wear a hat all the time (I'm only 20 years old) but I'll just leave it at that for now.
    • Thank you to both of you! I will try to play around with those things!
    • Hi Len, you could also look at getting some DPP-IV or DPP-4.  DPP-4 is an enzyme reputed to break down gluten to some extent anyway.  Of course, the testing was done in a lab and not a person.  And it wasn't a complete and perfect thing because you have to know the correct amount of enzyme to add to the gluten portion to break it down.  At least DPP-4 is available at reasonable prices.  I use it if  I think I might have gotten a gluten cross contamination issue, or any digestion problem really.  It's definitely not going to let you eat a gluten food without symptoms and damage though.  It might slightly reduce the symptoms a little.  But a little bit of help is better than nothing.  DPP-4 won't stop the immune reaction from occurring.  Nothing we know of now would do that except and outright cure for celiac disease.  Or not eating gluten, which is a lot more doable at the moment.
  • Upcoming Events