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Can You Die From Celiacs?


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18 replies to this topic

#1 L.A.

 
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Posted 27 June 2006 - 12:36 PM

I'm beginning to realize I'm rather naive since joining this site. In a few posts, there have been references made to dying from celiac disease...how? (be kind)
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#2 Guest_nini_*

 
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Posted 27 June 2006 - 12:40 PM

people can die from UNDIAGNOSED Celiac, or if they were diagnosed so late in life that they have so many other related health issues... however, if you've been properly dx'ed and adhere to a strict gluten free diet, then your odds of dying return to that of the average population, meaning you are more likely to be hit by a falling tree than to die of Celiac related complications. There are rare cases of refractory sprue that supposedly do not respond to the gluten-free diet, but again, this is rare and more likely the person isn't being as strict about their diet as they think they are... so,

don't panic... eat gluten-free and be healthy and don't worry about dying!
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#3 Ashley

 
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Posted 27 June 2006 - 12:41 PM

Welcome here! :) Don't worry, most here are kind.

From what I know, I believe you can if it goes unDxed for a long time. Without the right minerals/nutrients (which you're deprived of if your villi is serevely damaged from the anti-bodies attacking the gluten sticking to them because it can't be taken in if your villi is barely there.), you can lose excessive weight (been down that road), lose hair (same), causes other illnesses and diseases such as cancer. The tiredness is another thing, it can bring you down fast. No energy to excerise, do things that were normal, or anything else. It affects the entire body. Combos of D and C, headaches and other symptoms can wear you down. Some people don't have these symptoms at all, but, it's still doing the damage.

Nini is absolutely right!!! Your body should give a good dietary response and the villi will heal. Keeping with the diet is the key.

If you need anything, give me a PM!

-Ash

Edited by Ashley, 27 June 2006 - 12:43 PM.

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-Diganosed with Celiac's Disease on April 15, 2005.

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#4 Smunkeemom

 
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Posted 27 June 2006 - 12:45 PM

My youngest almost died from undiagnosed celiac, but technically she would have died from malnourishment caused by celiac disease.

I do know that some people are so far gone even when they do get diagnosed that they die from complications related to celiac, like a friend of mine who is fighting stomache cancer that they say was "caused" by her celiac disease.
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#5 L.A.

 
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Posted 27 June 2006 - 12:51 PM

Welcome here! :) Don't worry, most here are kind.

From what I know, I believe you can if it goes unDxed for a long time. Without the right minerals/nutrients (which you're deprived of if your villi is serevely damaged from the anti-bodies attacking the gluten sticking to them because it can't be taken in if your villi is barely there.), you can lose excessive weight (been down that road), lose hair (same), causes other illnesses and diseases such as cancer. The tiredness is another thing, it can bring you down fast. No energy to excerise, do things that were normal, or anything else. It affects the entire body. Combos of D and C, headaches and other symptoms can wear you down. Some people don't have these symptoms at all, but, it's still doing the damage.

Nini is absolutely right!!! Your body should give a good dietary response and the villi will heal. Keeping with the diet is the key.

If you need anything, give me a PM!

-Ash



Thanks for the clarification :) I have been gluten-free for 5 years now and am rather paranoid about staying that way--I even bring my own food to my Mom's when I visit. I was at the docs yesterday and he is testing my B12 levels, thyroid, calcium etc as I'm having problems with low weight (5'2" and weigh 97lbs) and hair loss--which really makes me mad. Guess I wait for the results and see what we need to do. Thanks for the responses!
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#6 Ashley

 
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Posted 27 June 2006 - 01:05 PM

Thanks for the clarification :) I have been gluten-free for 5 years now and am rather paranoid about staying that way--I even bring my own food to my Mom's when I visit. I was at the docs yesterday and he is testing my B12 levels, thyroid, calcium etc as I'm having problems with low weight (5'2" and weigh 97lbs) and hair loss--which really makes me mad. Guess I wait for the results and see what we need to do. Thanks for the responses!

No problem. Let us know how the testing went. :lol:

-Ash
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-Diganosed with Celiac's Disease on April 15, 2005.

"Art washes away from the soul the dust of everyday life"-Picasso


#7 tarnalberry

 
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Posted 27 June 2006 - 01:42 PM

yep, it's the undiagnosed celiacs, or the lack of compliance on the diet that's the problem. nutritional deficiencies and chronic inflammation lead to other autoimmune diseases, chronic states of nutritional deficiency, and cancers. some studies have shown that untreated celiac disease shortens the life span, on average, by 10 years, without saying anything about how it affects quality of life.
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#8 Soo B

 
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Posted 28 June 2006 - 10:19 AM

If you know who Kid Rock is, he used to have a 'sidekick' rapper named Joe C, who was often refered to as a 'midget' (their words, not mine). He would always correct people and say "I'm not a midget, I have Celiac Disease." He apparently had it bad/long enought that his growth was permanently stunted. Also, it's listed as his cause of death -- I believe he was in his 20's. Obviously an extreme example.

OK, I'm done pretending to be hip now.
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#9 cgilsing

 
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Posted 28 June 2006 - 07:05 PM

I've always wondered about that guy in kid rock's group....I knew that celiac disease was the official cause of his death, but I don't really understand that. I've heard that he was on 20 some different medications for celiac disease too :huh: . I just don't understand how if he knew he had celiac disease and was on a gluten-free diet how he died of celiac disease. I could see if the official cause of his death was complications from celiac disease and his medications were also because of complications....but as far as I know there aren't any medications for celiac disease. I just never really understood that whole situation :unsure:
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#10 hez

 
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Posted 28 June 2006 - 08:36 PM

I thought he had the refractory sprue which is why celiac is listed as cause of death. Although I am probably wrong since I am not up on Kid Rock!

Hez
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#11 mart

 
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Posted 28 June 2006 - 09:24 PM

L.A., this is a scary subject, but I agree that it's one that should be discussed. Don't be worried that you haven't gained much weight after being gluten-free for so long. That doesn't mean you have refractory sprue. Some people are just wired to be thin no matter what (some lucky people that is). I think refractory sprue is a fear that has crossed every celiac's mind at some point (it's crossed my mind). Just continue being careful to avoid all gluten and you will be fine, that's what all the experts say.
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#12 L.A.

 
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Posted 29 June 2006 - 07:05 AM

L.A., this is a scary subject, but I agree that it's one that should be discussed. Don't be worried that you haven't gained much weight after being gluten-free for so long. That doesn't mean you have refractory sprue. Some people are just wired to be thin no matter what (some lucky people that is). I think refractory sprue is a fear that has crossed every celiac's mind at some point (it's crossed my mind). Just continue being careful to avoid all gluten and you will be fine, that's what all the experts say.


Ok. No laughing...what is refractoy sprue?
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#13 penguin

 
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Posted 29 June 2006 - 07:07 AM

Ok. No laughing...what is refractoy sprue?



It's where the villi are unresponsive to the gluten-free diet, and the villi remain atrophied. That means you basically don't get better and you continue to not get enough nutrition, etc.
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#14 L.A.

 
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Posted 29 June 2006 - 08:56 AM

It's where the villi are unresponsive to the gluten-free diet, and the villi remain atrophied. That means you basically don't get better and you continue to not get enough nutrition, etc.


And then you die? I don't need to worry about this since my biopsy was negative right? :blink:
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#15 nikki-uk

 
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Posted 29 June 2006 - 09:13 AM

And then you die? I don't need to worry about this since my biopsy was negative right? :blink:


It is thought that if you have refractory celiac disease -the cell changes that occur will lead to lymphoma(cancer)-so yes,you could die-but nothing is cut and dried.

More often than not the people dx with 'refractory' didn't get their dx of celiac disease until late in life,so are usually pretty sick by then.

My husband was dx with refractory celiac disease(Age 40yrs) as the last 2 biopsies after going G.F showed there was no improvement in his villi.He also had a course of steroids to try and help him heal.

Believe me,my hubbies is far from dying!!!

I think there is still alot to learn about 'non-responsive' celiac disease,as in no way does my husband fit 'you're gonna die' bill.
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Son diagnosed with Coeliac Disease Oct 2006 by biopsy (at age 13yrs)

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