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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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    • xxnonamexx
      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    • cristiana
      Hi @Atl222 As @trents points out, there could be many reasons for this biopsy result.  I am interested to know, is your gastroenterologist concerned?  Also, are your blood tests showing steady improvement over the years? I remember when I had my last biopsy, several years after diagnosis, mine came back with with raised lymphocytes but no villous damage, too! In my own case, my consultant wasn't remotely concerned - in fact, he said I might still get this result even if all I ever did was eat nothing but rice and water.   My coeliac blood tests were still steadily improving, albeit slowly, which was reassuring.
    • trents
      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease or gluten/oats exposure. See attachment. But you might try eliminating oats to start with and possibly dairy for a few months and then seek another endoscopy/biopsy to see if there was a reduction in lymphocyte counts. 
    • Scott Adams
      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especially since Eden has a long-standing reputation for transparency. While the lack of gluten labeling can understandably give pause, manufacturer confirmation like this is often what people rely on for traditionally fermented products. As always, trusting your body after trying it is reasonable, but based on the information you gathered, your conclusion makes sense.
    • Scott Adams
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