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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
      Welcome to the celiac.com community, @JudyLou! There are a couple of things you might consider to help you in your decision that would not require you to do a gluten challenge. The first, that is if you have not had this test run already, is to request a "total IGA" test to be run. One of the reasons that celiac blood antibody tests can be negative, apart from not having celiac disease, that is, is because of IGA deficiency. If a person is IGA deficient, they will not respond accurately to the celiac disease blood antibody tests (such as the commonly run TTG-IGA). The total IGA test is designed to check for IGA deficiency. The total IGA test is not a celiac antibody test so I wouldn't think that a gluten challenge is necessary. The second is to have genetic testing done to determine if you have the genetic potential to develop celiac disease. About 30-40% of  the general population have the genetic potential but only about 1% actually develop celiac disease. So, genetic testing cannot be used to diagnose celiac disease but it can be used to rule it out. Those who don't have the genetic potential but still have reaction to gluten would not be diagnosed with celiac disease but with NCGS (Non Celiac Gluten Sensitivity).  Another possibility is that you do have celiac disease but are in remission. We do see this but often it doesn't last.
    • JudyLou
      Hi there, I’m debating whether to consider a gluten challenge and I’m hoping someone here can help with that decision (so far, none of the doctors have been helpful). I have a history of breaking out in a horrible, burning/itchy somewhat blistering rash about every 8 years. This started when I was in my early 30’s and at that point it started at the ankles and went about to my knees. Every time I had the rash it would cover more of my body, so my arms and part of my torso were impacted as well, and it was always symmetrical. First I was told it was an allergic reaction to a bug bite. Next I was told it was eczema (after a biopsy of the lesion - not the skin near the lesion) and given a steroid injection (didn’t help). I took myself off of gluten about 3 weeks before seeing an allergist, just to see if it would help (it didn’t in that time period). He thought the rash looked like dermatitis herpetiformis and told me to eat some bread the night before my blood tests, which I did, and the tests came back negative. I’ve since learned from this forum that I needed to be eating gluten daily for at least a month in order to get an accurate test result. I’m grateful to the allergist as he found that 5 mg of doxepin daily will eliminate the rash within about 10 days (previously it lasted for months whether I was eating gluten or not). I have been gluten free for about 25 years as a precaution and recommendation from my doctor, and the pattern of breaking out every 8 years or so remains the same except once I broke out after just one year (was not glutened as far as I know), and now it’s been over 9 years. What’s confusing to me, is that there have been 3 times in the past 2 years when I’ve accidentally eaten gluten, and I haven’t had any reaction at all. Once someone made pancakes (they said they were gluten-free, they were not) and I ate several. I need to decide whether to do a gluten challenge and get another blood test. If I do, are these tests really accurate? I’m also concerned that I could damage my gut in that process if I do have celiac disease. My brother and cousin both had lymphoma so that’s a concern regarding a challenge as well, though there is a lot of cancer in various forms in my family so there may be no gluten connection there. Sorry for the ramble, I’m just doubting the need to remain gluten free if I don’t have any reaction to eating it and haven’t had a positive test (other than testing positive for one of the genes, though it sounds like that’s pretty common). I’d appreciate any thoughts or advice! 
    • Jmartes71
      Hello, just popped in my head to ask this question about medications and celiac? I have always had refurse reaction to meds since I can remember  of what little meds my body is able to tolerate. I was taking gabapentin 300mg for a week,  in past I believe 150? Any ways it amps me up not able to sleep, though very tired.However I did notice it helped with my bloating sibo belly.I hate that my body is that sensitive and medical doesn't seem to take seriously. Im STILL healing with my skin, eye, and now ms or meningioma ( will know in April  which)and dealing with this limbo nightmare. I did write my name, address ect on the reclamation but im not tech savvy and not sure if went through properly. I called my city representative in Stanislaus County and asked if theres a physical paper i can sign for proclamation for celiac and she had no clue about what I was saying, so I just said I'll go back on website. 
    • Scott Adams
      I'm not saying that some celiacs won't need it, but it should be done under a doctor's supervision because it can cause lots of problems in some people.
    • Jmartes71
      I also noticed I get debilitating migraines when I smell gluten, wheat and its not taken seriously when it affects one in every way.Im still begging to properly be heard.I also noticed tolerance level is down the drain with age and life changes. I have been told by incompetent medical that im not celiac or that sensitive. Diagnosed in 1994 by gi biopsy gluten-free ever since along with other lovely food allergies. Prayers
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