How Long Do Celiac Patients Live?

[CMCM]

On 12/28/2009 at 3:23 PM, twe0708 said:

I read a lot of posts, but most people have been newly diagnosed or haven't been gluten free for more than 10 years (at least very few that I have read about!) Does anyone know of anyone with Celiac Disease that is in their late 60's or 70 years plus of age? Just wondering if people with Celiac can live to be 80 plus? And I know it depends on how well you do staying gluten free, but I haven't heard of any elderly people with this! Is this because people with Celiac Disease may die sooner than someone without Celiac? 😲

Good news for you!  But first the story:  My mother nearly died from undiagnosed celiac disease in 1967.  Most doctors knew virtually NOTHING about celiac back then.  One doctor thought she might have tropical sprue, but when she said she had not gone anywhere in the tropics that doctor lost interest.  She got worse and worse, and they insinuated it was all in her head, almost mocking her and suggesting all her symptoms were psychologically induced.  When she got down to about 85 pounds and couldn't keep anything down, she finally met a doctor who asked if she had ever been tested for celiac disease.  He did so and she underwent an endoscopy and her problems were finally identified.  The endoscopy revealed that her intestines had no villi left at all, which of course is why she was so severely malnourished and had lost so much weight.  She was told to avoid all gluten, and that was about it.  There were no gluten free foods in 1967, so she learned to cook/bake with rice flour, and ate mostly meat, fruits and vegetables she prepared at home.  She almost never ate out, too dangerous.  About 8 months later she had a second endoscopy, and her villi had regenerated.  She regained weight and was healthy again.  For the rest of her life, any time she got accidentally glutened, usually very mysteriously and from something she couldn't identify, she was incredibly and violently sick for a couple of days.  But other than that, she was always healthy.  And finally, here's the good news:  She lived until 95!!!  

As an addendum:  She finally got a gene test in 2007, when I first got mine.  It revealed she had TWO of the main celiac genes (one from each parent), so that might explain the severity of her reactions and why she got so sick. 

[nartofree]

1 hour ago, CMCM said:

Good news for you!  But first the story:  My mother nearly died from undiagnosed celiac disease in 1967.  Most doctors knew virtually NOTHING about celiac back then.  One doctor thought she might have tropical sprue, but when she said she had not gone anywhere in the tropics that doctor lost interest.  She got worse and worse, and they insinuated it was all in her head, almost mocking her and suggesting all her symptoms were psychologically induced.  When she got down to about 85 pounds and couldn't keep anything down, she finally met a doctor who asked if she had ever been tested for celiac disease.  He did so and she underwent an endoscopy and her problems were finally identified.  The endoscopy revealed that her intestines had no villi left at all, which of course is why she was so severely malnourished and had lost so much weight.  She was told to avoid all gluten, and that was about it.  There were no gluten free foods in 1967, so she learned to cook/bake with rice flour, and ate mostly meat, fruits and vegetables she prepared at home.  She almost never ate out, too dangerous.  About 8 months later she had a second endoscopy, and her villi had regenerated.  She regained weight and was healthy again.  For the rest of her life, any time she got accidentally glutened, usually very mysteriously and from something she couldn't identify, she was incredibly and violently sick for a couple of days.  But other than that, she was always healthy.  And finally, here's the good news:  She lived until 95!!!  

As an addendum:  She finally got a gene test in 2007, when I first got mine.  It revealed she had TWO of the main celiac genes (one from each parent), so that might explain the severity of her reactions and why she got so sick. 

I am 69 years old and just got diagnosed.  I live an active life and seem healthy enough.

[Scott Adams]

This thread is inspiring! The general belief is that if celiacs go gluten-free and eat a well-balanced diet (replace the fiber missing from the wheat you subtracted), they should have normal life spans. I would add that they will have much longer life spans because they treated a very dangerous disease. Yet I still have a cousin who have this and won’t go gluten-free.

[trents]

On 12/28/2009 at 3:23 PM, twe0708 said:

I read a lot of posts, but most people have been newly diagnosed or haven't been gluten free for more than 10 years (at least very few that I have read about!) Does anyone know of anyone with Celiac Disease that is in their late 60's or 70 years plus of age? Just wondering if people with Celiac can live to be 80 plus? And I know it depends on how well you do staying gluten free, but I haven't heard of any elderly people with this! Is this because people with Celiac Disease may die sooner than someone without Celiac? 😲

I will be turning 70 in April. I was diagnosed with celiac disease almost 20 years ago but looking back there were some definite clinical markers that the disease was active for about 15 years before diagnosis. I have an uncle who is now almost 90 years old who was diagnosed with celiac disease probably 12-15 years ago but has never practiced gluten-free eating. He's still ticking. 

[Scott Adams]

Ok, so if @trents can convince his uncle to go gluten-free, he should make it to 130!!

[trents]

11 minutes ago, Scott Adams said:

Ok, so if @trents can convince his uncle to go gluten-free, he should make it to 130!!

I've tried. He's a very social person who dines out frequently and it's clear to me that he has decided that is more important to him than enduring the health risks posed by continuing to consume gluten. In addition, I think he is largely asymptomatic.

Edited January 20, 2021 by trents

[Scott Adams]

You may want to turn him on to GliadinX. It isn't designed for his situation, but it is better than nothing at all, and could possibly be very helpful.

[CMCM]

I've been thinking about my grandmother, who lived to 99.  She obviously had a celiac gene to give to my mother.  I'm not aware that she had any issues similar to my mother, but she did have severe arthritis from at least 80 onwards, perhaps longer.  She did eat gluten, but perhaps not a lot of it.  She grew up on a farm and mostly ate meat, potatoes and vegetables, nothing packaged.

[trents]

2 hours ago, Scott Adams said:

You may want to turn him on to GliadinX. It isn't designed for his situation, but it is better than nothing at all, and could possibly be very helpful.

To be honest, I don't think he cares enough to be interested in doing anything about it.

[Anne Chopping]

I have been on a gluten-free diet for 55 years ever since I was diagnosed with celiac disease at age 13. I am a very healthy 68 year old who looks absolutely fantastic. I get tons of compliments about how young I look for my age. Please be assured that so long as you stick to the diet you will be a very energetic, healthy, happy person with the same life expectancy as non-celiacs. 

[trents]

Anne, you were blessed to have caught your celiac disease at such a young age before a lot of collateral damage was done to your body and at a stage in life when your healing powers were at peak efficiency. That will not be everyone's experience. 

[Scott Adams]

Hi @Anne Chopping, and welcome to the forum! It's great to hear how positive things have gone for you, and your story provides hope for many who are younger and still wonder how this disease will affect their lives.

[Elisabeth Gerritsen]

On 1/20/2021 at 8:49 PM, CMCM said:

I've been thinking about my grandmother, who lived to 99.  She obviously had a celiac gene to give to my mother.  I'm not aware that she had any issues similar to my mother, but she did have severe arthritis from at least 80 onwards, perhaps longer.  She did eat gluten, but perhaps not a lot of it.  She grew up on a farm and mostly ate meat, potatoes and vegetables, nothing packaged.

Hi, I'm thinking of my mother, who lived until she was 100. She was born in 1906. At that time nobody knew about Celiac, especially in Suriname, South America. She was very particular with food, we noticed. She would not drink milk or yoghurt an she didn't like bread or pasta. She told us some stories why, but I never believed her. She was in very good health, but she didn't smoke or drink. 

I started my life with al kinds of medical complaints and later it turned out I have Celiac and I suffer from lactose intolerance. My daughter and I have the same medical problems, so I guess my mother also had Celiac and a lactose problem.

I am 77 now and my daughter is 60, so I guess you can get very old with celiac!

 

[Scott Adams]

Your mother made it to 100...and your 77 amazing!

It does sound like she was, at the very least, gluten sensitive. A recent study indicates that first degree relatives of celiacs have a 44% chance of also having it, so the fact that you were diagnosed with it, depending on which side of your family the genetic marker came from, indicates that the odds are pretty good that she also had it. 

[MADMOM]

On 1/17/2021 at 11:21 AM, Scott Adams said:

This thread is inspiring! The general belief is that if celiacs go gluten-free and eat a well-balanced diet (replace the fiber missing from the wheat you subtracted), they should have normal life spans. I would add that they will have much longer life spans because they treated a very dangerous disease. Yet I still have a cousin who have this and won’t go gluten-free.

i agree why wouldn’t we live as normal as anyone else with an issue like this or any other - we are actually getting healthier by eating properly - i don’t like when ppl ask will be live just as long!  if u don’t treat any condition you have you are risking your health !  Celiac is just the same- my GI says so many go undiagnosed and are ok - glad that i know and have gone into curing my gut mode! 

[Melissa93]

I'm pretty sure my grandmother has celiac disease. She says that her brother and her mother had it, but she's unsure of herself. 2 out of 3 kids have diagnosed celiac disease and my mother (the last one) is being tested now. Anyway she's 82 and eats a ton of gluten. She's very underweight but she did make it this far!

[Scott Adams]

She should consider a blood test for celiac disease. ~44% of first degree relatives of celiacs also have it.

[Melissa93]

1 hour ago, Scott Adams said:

She should consider a blood test for celiac disease. ~44% of first degree relatives of celiacs also have it.

I know.. I think she did get it tested and got an endoscopy, like 15 years ago when her sons got tested positive. But I'm not sure what the results were, she just claims to be sensitive to it. But still eats it. My grandma is quite stubborn lol.

[BrianG]

On 12/28/2009 at 6:30 PM, mushroom said:

No, I think it is just because most older people have never been diagnosed. I am sure both my parents had it and both lived to be 80 plus without diagnosis. My sister who is self-diagnosed just turned 75. I am a few years behind her (but still what you think of as "old") but only self-diagnosed two years ago. Don't forget the blood test was developed only 10 years ago and up until that point doctors thought celiac was a very rare disease. You would be amazed how many elderly people are walking around with "IBS"

How is it possible to live into your 80's and not experience symptoms? Can some people really have this disease their whole lives and never present symptoms from it? 

[Scott Adams]

Many celiacs do not have any obvious symptoms, yet their health risk is still the same.

This search will guide you to some research summaries on this topic:

https://www.celiac.com/search/?&q=asymptomatic&type=cms_records2&search_and_or=and&search_in=titles&sortby=relevancy

 

[CMCM]

On 1/27/2021 at 5:04 AM, Elisabeth Gerritsen said:

Hi, I'm thinking of my mother, who lived until she was 100. She was born in 1906. At that time nobody knew about Celiac, especially in Suriname, South America. She was very particular with food, we noticed. She would not drink milk or yoghurt an she didn't like bread or pasta. She told us some stories why, but I never believed her. She was in very good health, but she didn't smoke or drink. 

I started my life with al kinds of medical complaints and later it turned out I have Celiac and I suffer from lactose intolerance. My daughter and I have the same medical problems, so I guess my mother also had Celiac and a lactose problem.

I am 77 now and my daughter is 60, so I guess you can get very old with celiac!

 

I think the people who have shorter lives never figure it out, sad to say.  Casein sensitivity is often linked with gluten sensitivity.  I had terrible problems with milk once my mother stopped breastfeeding after a short time, and I couldn't tolerate milk from infancy.  I also read recently that a celiac mother (as mine was) can pass on the sensitivity to the infant if the infant has the predisposing genes, as I did.  I think growing up with a celiac mother led me to eat in a way that was beneficial to me in the long run, and although I wasn't totally gluten free most of my life, I did always minimize gluten.  I've had dairy/casein/lactose issues my entire life  (I'm 71), and wasn't aware of the gluten sensitivity until about 16 years ago.  

[Papa Barry]

Hi I was diagnosed in 1960 so yes I am old still living with Celiac Sprue as it was really called.  It's very hard on the body this disease.  After years of mis diagnosis and guessing & test guinea pig so often I can't say, the body just wears out like a diabetics.  And the number of surgeries I lost track at 20 years old and my files reduced to micro film.  I was written about back then and Dr Megan's dissertation was dedicated to me.  It's been a long road and this quad bypass recently has been the last I think with this COVID.  So much miss info from people who think they know out there be cautious with everything.  Weeks lost sick for miss labeled or not by manufactures will hurt you the worst.

[MADMOM]

why so many surgeries?  are they linked to your celiac?  please elaborate if you can 

[cristiana]

Came across this thread by accident.   A little late to the party but I wanted to add that my consultant told me ten years ago, when I was diagnosed, that he had just diagnosed someone in their nineties!  From memory, I think he said the patient was 96.

[Jwoods]

So glad to see this. I read so many of these pages on Google and a lot say young adults especially die within a year of diagnosis but when I speak to my GI doctor he said people in general with celiac live long life’s . I’m newly diagnosed and have started my gluten free diet to repair my intestines