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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.

Can You Die From Celiacs?
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19 posts in this topic

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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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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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
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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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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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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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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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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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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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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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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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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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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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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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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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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.

thanks! :)

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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.

My uncle died of Lymphoma in '98 three days after Christmas. 'Round the began of '98, late '97 or so, he began to have problems with his stomach and didn't eat very much. Looking back now, it seemed so much like he had to have Celiac. I highly think he did have celiac disease. Dunno if it was refractory but I wish celiac disease was more know of back then as it is now. :(

-Ash

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as for the refractory spru, how do they know if thats what you have? if my bloodwork was absolutly negative, perfectly iga lvels perfect everything, does that meen its not?

i think my dad has celiac, but he wont listen to me- his teeth are rotting out- he has what look like meth blisters on his face- a very rounded belley but no wait anywhere else... really wish he would listen to me before he does have real problems

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Refractory Celiac is very very rare. Say you have a biopsy done and it shows major damage so you go 100% gluten free. Refractory means after you go gluten free, the damage is still there and has shown no sign of healing. In this case, you usually have to go on steroids.

As far as dying from celiac goes, if you have celiac and do not go gluten free or even cheat as often as once a month(which proves you damage yourself just like not following the diet) you are more likely to get cancer and other life threatening and disabling illnesses and it takes about 10 years off of your life.

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