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Any One Over 60 Living With Celiac


Guest bananababy

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Welda Johnson Newbie

My name is Welda. I am 64 years old and have had Celiac symptoms since age 8. Mine manifested as severe Asthma, and at age 19, with two little babies, I was told that I would be bedridden by the age of 25 if I didn't take the scratch skin tests for allergies, and follow up with 3 years of shots. I did that, and still was so sick. By age 22 I had 3 babies, and was suffering terribly. I started eliminating foods--all grains, then all milk and dairy, then egg whites, yeast, casein, whey and modified food starch. Unfortunately, I would feel great when off those foods, and would think I could go back to eating them when I felt well. Wrong. Eventually in my fifties, I went for a colonoscopy and the nurse looked at my food intolerances and mentioned Celiac. I had heard that name before, and so I got on this website. It changed my life. I started stringently sticking to the Celiac diet, and have experienced a wonderful life change. I now eat mostly fruits and vegetables, and my weight has normalized. At five feet tall, I feel so much better now than I ever did before. I walk five miles almost every day, usually sleep great, and make sure that I eat every few hours to keep going strong. I thank God for the new direction my life has taken. I have an aunt in Texas who is 98 years young. Perhaps I'll live that long too. Every day gets better. Welda

  • 3 weeks later...

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PinkLady Newbie
has any one , lived with undiagnosed celiac for over 60yrs or their abouts and has now been diagnosed I would love to see on the boards about seniors living and coping with the disease this would help much thanks

Yes, I was diagnosed jjust a week ago for the first time and I am 61! It is kind of fun to try out all these gluten free products and restaurants! What part of

the country do you live in and how old are you?

Chizlib Newbie
Yes, I was diagnosed jjust a week ago for the first time and I am 61! It is kind of fun to try out all these gluten free products and restaurants! What part of

the country do you live in and how old are you?

I am 64 years old suffering with Chronic Fatigue Syndrome and Fibromyalgia with a soupcon of Coeliac thrown in for good measure. I have only recently been diagnosed with Coeliac, and ridiculous as it may sound, previous to diagnosis my digestive system was well under my control, much more controlled than your average set of guts, with no symptoms of Coeliac. (OK !So I could fart {pardon me} for my country, but so can many people.)

I have a recto-vaginal fistula which for the last 28 years I have managed and controlled rigidly to the point of knowing what, and when to eat to prevent accidents, it had become second nature. Bearing in mind the female anatomy, there is no way you can stick a colostomy bag over that !!! So dietary control was/is of paramount importance.

Following endoscopy - it will NEVER catch on as a hobby - and diagnosis of Coeliac Disease I dutifully changed my diet to Gluten free. OH! MY GIDDY AUNT! (I dare not use the words I really want to use, I will be excommunicated from the message board/forum/ decent society and probably Life itself!! :o I don't know, quite literally whether I am coming or going, or more to the point WHEN! Do I sound ungrateful when I say I wish nobody had thought to investigate and find the coeliac problem? I am struggling at the moment, in fact I am on fluids only, and have to say that my guts are at peace for the first time since the biopsy and change of diet. Trouble is, having achieved peace and tranquility, I am reluctant to start n solid food again.

  • 3 months later...
Dan300 Newbie

I just turned 61 , 2 weeks ago, and have had a skin problem (DH ?) for 25+ years, after 10 doctors, I had to do my own research and went Gluten free at the end of march. my lessions are healing (always took a while) and hadn't had any new break outs except for about 3 weeks ago when I had a six pack of Mikes Hard lemon aid ,Malted? (over 3 days ) and a large bag of candie ( bulls eyes, caramel cremes,,,,wheat flour) while driving back from Florida.......... broke out the next day !!! so I'm 99% sure I'm Gluten intolerant, this is after the doctors insisted that I didn't have Celiac disease . Went to a lecture by Dr Tom O'Bryan, he showed us a graph on what ages people where finially getting diagnosed ( average 5 doctors and 8 to10 years ) it showed that 25% finially got diagnosed at 60years and older.... he showed that Celiac ( official biopsi of the gut ) and Gluten intolerance are the same,,,,,,,,, just a matter of degrees and how long , and also that it can affect any organ in your body including your Brain (migraines , depression ect ) He also said that we still don't know all the DNA genes yet as a lot of people have this problem and don't have the gene trigger , I've also seen on the web reciently that "as much as 30% of the American population is Gluten sensitive" I was at a talk tuesday night at a Whole Food store, on gluten free cooking with also a certified dietitian nutritionist, as her family was from India she reminded us that 2/3 rds of the world is on a gluten free diet, some thing to think about..... I know the drug companies don't want to hear about a cure without drugs $$$$$$$ and I think that the doctors are only trained it treating problems with medications so thank you to forums and web sites like you and the intertnet we are learning on our own how the world works , no we're not doctors but knowledge is power Dan

nutralady2001 Newbie

Yes I am 61 also

Was diagnosed over 2 years ago via biopsy and antibodies after nearly 50 years of being stuck with "other labels" the most persisent one being "IBS"

marfa62 Newbie

senior, senior?? middle age, I just started living 2 years ago. I still can remember the time I took them all to Spain for the last family vacation. I spent the week in the bathroom or the bed, zoning out and sleeping when I wasn't angry.

Now I have a neat racing bicycle, cross country ski and after years of fighting muscle fatigue, am getting some serious exercise. I have always felt that this disease attacks my muscles. I cannot keep up with other people my age- or twenty years older! But every year is better. I have a disabled son ( a direct result of undiagnosied celiac and pregnacy) who is a joy, he is my partner in running around.

The tiredness has lessened. the fight is to exercise, then nap or do a low key day. But I am looking forward to being a hellion. M

has any one , lived with undiagnosed celiac for over 60yrs or their abouts and has now been diagnosed I would love to see on the boards about seniors living and coping with the disease this would help much thanks

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    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
    • Xravith
      I'm very confused... My blood test came out negative, I checked all antibodies. I suppose my Total IgA levels are normal (132 mg/dl), so the test should be reliable. Still, I'm not relieved as I can't tolerate even a single biscuit. I need to talk to my doctor about whether a duodenal biopsy is necessary. But it is really possible to have intestinal damage despite having a seronegative results? I have really strong symptoms, and I don't want to keep skipping university lectures or being bedridden at home.
    • Scott Adams
      They may want to also eliminate other possible causes for your symptoms/issues and are doing additional tests.  Here is info about blood tests for celiac disease--if positive an endoscopy where biopsies of your intestinal villi are taken to confirm is the typical follow up.    
    • Scott Adams
      In the Europe the new protocol for making a celiac disease diagnosis in children is if their tTg-IgA (tissue transglutaminase IgA) levels are 10 times or above the positive level for celiac disease--and you are above that level. According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy: Blood Test Alone Can Diagnose Celiac Disease in Most Children and Adults TGA-IgA at or Above Five Times Normal Limit in Kids Indicates Celiac Disease in Nearly All Cases No More Biopsies to Diagnose Celiac Disease in Children! May I ask why you've had so many past tTg-IgA tests done, and many of them seem to have been done 3 times during short time intervals?    
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