How Long Do Celiac Patients Live?

[twe0708]

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? 😲

[mushroom]

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"

[wildwood]

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.

[psawyer]

  wildwood said:

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!

[Wolicki]

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.

[VioletBlue]

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.

  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?

[ciavyn]

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).

[Ahorsesoul]

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.

[lovegrov]

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

[twe0708]

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!

[mushroom]

Just the very fact of your diagnosis and quitting eating gluten has increased your longevity odds immensely 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.

[AndrewNYC]

I am 104.

[CMCM]

  On 12/28/2009 at 11:23 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?

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.

[mysecretcurse]

  On 12/30/2009 at 12:02 AM, AndrewNYC said:

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.

[clogger69]

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

[Judyin Philly]

I did 4 'quotes' but they didn't show uo...anyway

agree with so much said,esp. the years of the IBS dx!

I'm 68 wasn[t dx'dtill 5 years ago with now multipale auto immune issues

all we can do is be greatful we finally got the dx and are trying daily to get our health back

I'm sure my Mother had too

Judy in CA was (Philly)

[EmilyR83]

My grandma is 80+ with what she calls Celiac Sprue and is as healthy as they come!

[Dwayne]

   Hello,

   I am Dwayne (celiac syndrome 1957) 61 years old, 150 pounds, 6 foot tall.

I recently received four emergency heart stents to releive a 100% heart blockage during a heart attack.  I had no idea I had any heart problem or even that I was having a heart attack because I thought it was probably normal refractory celiac pain.

I had a gluten exposure in the hospital and a celiac attack in the ICU. The Celiac attack was as painful as the full blown 100% blockage, four stent last minute save heart attack.

I survived with no heart damage. 

 Many have asked why they do not hear about celiacs my age.

   Most celiacs who are older than me are late age diagnosis. I was celiac syndrome (critical severe) before age one.

Many child celiacs pre-1950's did not survive.

Dorthy Anderson Diet saved many celiac syndrome babies in the 1950's like me.

Dorthy Anderson discovered cystic fibrosis and saved many babies when she discovered cf in many (thought to be celiac) child celiac autopsies that some turned out to be cf instead.  

Bananas for intestinal balance, chocolate for phenol to replace intestinal lining.

                             gota jump                                             Dwayne (celiac)  

https://cfmedicine.nlm.nih.gov/physicians/biography_8.htm

Dr. Dorthy Hansine Anderson

Andersen's duties included performing autopsies. While conducting an autopsy on a child who had presented the clinical picture of celiac disease¿an illness caused by an intestinal hypersensitivity to gluten that inhibits digestion¿Andersen noticed a lesion in the pancreas. Following an extensive search of the autopsy records and related medical literature, she discovered a clear, though previously unrecognized, disease pattern. She called it cystic fibrosis. But Andersen did not think of herself solely as a pathologist and continued to work on diagnosing this new disease in living patients. Andersen and her research team made numerous discoveries that led to a simple diagnostic test for cystic fibrosis, one that is still in use today.

 

 

Edited May 26, 2018 by Dwayne

[Joyea]

  On 12/29/2009 at 11:31 PM, twe0708 said:

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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I am 73 with celiac, half our family has it. I have excellent blood pressure and am on no medication. I go to an holistic medical doctor who also has celiac. I also take vitamins that he recommends. I wasn't diagnosed until my late 30's. (Sick alot). Joy Dobson

[Tammy42]

  On 12/29/2009 at 8:00 PM, Ahorsesoul said:

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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this is crazy to me! how old was your dad when diagnosed? i know this post is so old but i'd love an update! 

[Tammy42]

  On 1/5/2010 at 12:55 AM, clogger69 said:

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

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hi! how are you doing now? i'd love an update! i know this an old post but how have the last ten years been? 

  On 5/28/2018 at 8:39 PM, Joyea said:

I am 73 with celiac, half our family has it. I have excellent blood pressure and am on no medication. I go to an holistic medical doctor who also has celiac. I also take vitamins that he recommends. I wasn't diagnosed until my late 30's. (Sick alot). Joy Dobson

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how are you doing now? i was just diagnosed and i'm 34. i was very sick during a pregnancy and found it shortly after her birth. 

[Kyleweber]

This thread needs to be perminantly on the homepage or something.

Just got diagnosed this week and its been a rollercoaster of emotion. Reading this definitely helped bring my spirits back up.

[Scott Adams]

Yes, many people get diagnosed when older, and still manage to have a 2nd "new" and long life afterwards. Many never get diagnosed, yet still live a long life, albeit it could be an uncomfortable one if they are symptomatic. As for @AndrewNYC being 104, wow, just wow! 

[DJFL77I]

I know a priest in the UK who was diagnosed at around 50'ish...  he's 75 now

[GFinDC]

I am still waiting to find that out personally.