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How Long Do Celiac Patients Live?


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16 replies to this topic

#1 twe0708

 
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Posted 28 December 2009 - 03:23 PM

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? :o
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#2 mushroom

 
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Posted 28 December 2009 - 03:30 PM

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" :o :lol:
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

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#3 wildwood

 
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Posted 28 December 2009 - 04:14 PM

Another reason you may not find alot of people in the 65 and older age group posting (especially those that are in the 70-80 year old range), is that not as many people in this age group are computer "savvy" and they may not use computers.
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#4 psawyer

 
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Posted 28 December 2009 - 05:44 PM

Another reason you may not find alot of people in the 65 and older age group posting (especially those that are in the 70-80 year old range), is that not as many people in this age group are computer "savvy" and they may not use computers.

Excellent point!
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Peter
Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000.
Type 1 (autoimmune) diabetes diagnosed in March 1986
Markham, Ontario (borders on Toronto)

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#5 Wolicki

 
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Posted 28 December 2009 - 06:55 PM

I have a friend who is 80+ with Celiac. She calls it Celiac Sprue, because that's what they called in back in the old days. Most current docs don't know diddly about Celiac, so I am fairly sure they didn't know much about it way back when. Lots of undiagnosed old folks, is my guess.
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Gluten free is not so bad! If you are new, hang it there, it gets easier!

#6 VioletBlue

 
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Posted 29 December 2009 - 12:19 AM

I'm pretty sure my grandfather had it and he lived to be 96. He also suffered with severe arthritis from his forties on, was overweight and had memory and coordination problems. He ate fried eggs bacon and white toast every day of his life for breakfast too. I think Celiac is just part of the picture and not neccesarily the determining factor in how long someone lives.


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? :o


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"My mother always told me, it's okay to play with a man's mind
as long as you put it back where you got it when you're done with it."

#7 ciavyn

 
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Posted 29 December 2009 - 08:49 AM

My friend who finally convinced me to try this diet is 67, and still travels at least 280 days a year for work. I am convinced both my mother and grandmother have it, and they are both over 60 (grandma is 85).
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Gluten free: Nov. 2009
Peanut and dairy free: Dec. 2009
Rediscovered dairy: March 2010 (in small quantities)
Peanuts added back: June 2010 (in small quantities)

#8 Ahorsesoul

 
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Posted 29 December 2009 - 12:00 PM

My dad will be 90 in May. He's celiac and never gone gluten free. Will say his wife if Japanese so he eat more Asian than American.
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1960s-had symptoms-could have been before but don't remember
1970s-told had colitis or nervous stomach-was given phenobarbital, felt great but still had symptoms
Me, dd and ds diagnosed with Lactose Intolerance
2000-osteopenia
2001-had stroke because of medications I was given
June 2003-saw Chiropractor who specialized in nutrition: Celiac Disease not Lactose Intolerance, went gluten free with once in awhile cheating, off soy and dairy for about 6 months
June 2003-found excellent doctor for fibromyalgia (who has found out she has Celiac Disease)
May 2006-went gluten free with NO cheating-excellent! Made all the difference in the world

#9 lovegrov

 
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Posted 29 December 2009 - 01:10 PM

No need to get paranoid. My father is 78 and wasn't even diagnosed until he was 70.

As someone else pointed out, older folks are less likely to be on discussion groups like this.

richard
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#10 twe0708

 
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Posted 29 December 2009 - 03:31 PM

Thank you everyone for your posts. Paranoid is exactly how I have been feeling. Good to know we can still live as long as the average person. It's been hard because I feel so embarrassed going in to restaurant after restaurant and explaining my situation. It's embarrassing to cry in a restaurant and have to put your sunglasses on. I will try to relax more and take it day by day! :)
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#11 mushroom

 
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Posted 29 December 2009 - 03:55 PM

Just the very fact of your diagnosis and quitting eating gluten has increased your longevity odds immensely :D I really don't think you need fear an imminent demise. We eat more healthily than the rest of the population and may well outlast them all. :rolleyes:
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#12 AndrewNYC

 
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Posted 29 December 2009 - 04:02 PM

I am 104.
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#13 CMCM

 
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Posted 03 January 2010 - 10:44 PM

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? :o


My mom!!!! She nearly died from celiac because it hit her in her mid 40's, back in the 1960's. She got to the point where she weighed 89 lbs (her normal weight would be 115 or so). Her intestines were smooth as a billiard ball, they said. Anyhow, luckily she met a doctor who had encountered celiac and suggested she get tested for it, and that was it! She went on a gluten free diet (hard to do back then) and she's about to celebrate her 89th birthday. She's healthy as can be, looks far younger than her years (most people think she's in her early 70's). She's sharp as a tack and still drives her car, and she has no real health problems at all. She remains very very sensitive to gluten, however, even after all these years. A microscopic smidgen of gluten anywhere and she'll be vomiting violently and sick as a dog. This aspect of celiac has never changed for her, and in fact, after so long avoiding gluten any exposure to it seems worse than in younger years. By the way, she turned out to have TWO celiac genes, and I'm thinking that might make your reactions worse. I have one celiac gene and one gluten sensitivity gene, and my reactions are nowhere near as severe as hers.

So the answer to your question is that IF YOU GO GLUTEN FREE, and especially if you find out you have celiac disease before you are beset with other autoimmune health problems as a result of untreated celiac disease, you will live a completely normal life. I'd say my mom is in far better health than those who eat gluten (and other junk), to be truthful. As a result of the celiac disease, she has always been a healthy and careful eater. This has served her very well.
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CAROLE

-------------
Enterolab 1/2006
IgA & tTg Positive
DQ2-0201 (celiac) and DQ1-0604 (gluten)
Casein IgA positive
Mom has 2 celiac genes
Both kids have a celiac gene.
Lots of celiac disease in my family, both sides.

#14 mysecretcurse

 
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Posted 04 January 2010 - 12:04 PM

I am 104.


Really??? Whoa, cool!

I think how long we live probably depends on how gluten effects us. I came close to death when I was younger because my gum/skin lesions got horribly infected and my immune system just collapsed basically. The infection spread to my blood and I ended up delerious with 105 degree fever. It was really scary, I barely even remember some of it. They had to physically cut infected tissue from my gums (not fun) to help prevent the infection from spreading any worse and I was on antibiotics for a month and in bed for two weeks trying to recover. The doctors said I would have died had I not come into the hospital when I did... There was a second time my DH/gluten lesions/whatever they are got infected with staph and it was pretty scary and VERY painful. I honestly believe if I went back on gluten again Id be dead within a month... so it just depends.
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#15 clogger69

 
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Posted 04 January 2010 - 04:55 PM

I am so happy to see this topic and the positive post. Just made my day. This has been my biggest concern. I was dx March 2009 and will be 70 in May. I have always tried to live a very healthy and active life and this has been hard. I hope to be dancing until the end which I hope is a long way off :rolleyes:
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