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Any One Over 60 Living With Celiac

Guest bananababy

By Guest bananababy
in Introduce Yourself / Share Stuff

Recommended Posts

Welda Johnson Newbie
Welda Johnson
Posted

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
PinkLady
Posted
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
Chizlib
Posted
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
Dan300
Posted

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
nutralady2001
Posted

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
marfa62
Posted

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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    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt.   I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the same reason I gave up dairy and eggs- they make me feel ill.  I do have a bit of a sugar addiction lol so a lot of times I wasn't sure if it was the refined grains that I was eating - or the sugar. So from time to time I might have a cookie or something but I've learned how to make wonderful cookies and golden brownies with BEANS!! and no refined sugar - I use date paste instead. Pizza made me so ill- but I thought it was probably the cheese. I gave up pizza and haven't missed it. the one time I tried a slice I felt so bad I knew I'd never touch it again. I stopped eating wheat pasta at least 3 yrs ago- just didn't feel well after eating it. I tried chick pea pasta and a few others and discovered I like the brown rice pasta. I still don't eat a lot of pasta but it's nice for a change when I want something easy. TBH over the years I've wondered sometimes if I might be gluten intolerant but really believed it was not possible for me to have celiac disease. NOW I need to know for sure- because I'm in the middle of a long process of trying to find out why I have a high parathyroid level (NOT the thyroid- but rather the 4 glands that control the calcium balance in your body) I have had a hard time getting my vit D level up, my serum calcium has run on the low side of normal for many years... and now I am losing calcium from my bones and excreting it in my urine (some sort of renal calcium leak) Also have a high ALP since 2014. And now rapidly worsening bone density.  I still do not have a firm diagnosis. Could be secondary HPT (but secondary to what? we need to know) It could be early primary HPT. I am spilling calcium in my urine but is that caused by the high parathyroid hormone or is it the reason my PTH is high>? there are multiple feedback loops for this condition.    so I will keep eating the bread and some wheat germ that does not seem to bother me too much (it hasn't got enough gluten to use just wheat germ)    but I'm curious- if you don't have a strong reaction to a product- like me and wheat germ- does that mean it's ok to eat or is it still causing harm even if you don't have any obvious symptoms? I guess what you are saying about silent celiac makes it likely that you can have no symptoms and still have the harm... but geez! you'd think they'd come up with a way to test for this that didn't require you to consume something that makes you sick! I worry about the complications I've been reading about- different kinds of cancers etc. also wondering- are there degrees of celiac disease?  is there any correlation between symptoms and the amnt of damage to your intestines? I also need a firm diagnosis because I have an identical twin sister ... so if I have celiac, she has it too- or at least the genetic make up for having it. I did have a VERY major stress to my body in 2014-2016 time frame .. lost 50lbs in a short period of time and had severe symptoms from acute protracted withdrawal off an SSRI drug (that I'd been given an unethically high dose of, by a dr who has since lost his license)  Going off the drug was a good thing and in many ways my health improved dramatically- just losing 50lbs was helpful but I also went  off almost a dozen different medications, totally changed my diet and have been doing pretty well except for the past 3-4 yrs when the symptoms related to the parathyroid issue cropped up. It is likely that I had low vit D for some time and that caused me a lot of symptoms. The endo now tells me that low vit D can be caused by celiac disease so I need to know for sure! thank you for all that great and useful information!!! 
    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
    • trents
      Accuracy of testing concerns

      By trents · Posted

      The biopsy looks for damage to the mucosal lining of the small bowel from the inflammation caused by celiac disease when gluten is ingested. Once you remove gluten from the diet, inflammation subsides and the mucosal lining begins to heal. 
    • Theresa2407
      Doctors and Celiac.com

      By Theresa2407 · Posted

      Our support groups in Iowa have tried for years to educate doctors and resource sites like this one.  We have held yearly conferences with continued education classes.   We have brought in Dr. Murray, Dr. Fasano, Dr. Green and Dr. elliott.  In those many years we may have had 2 doctors attend.  We sent them information, with no response.  I talked to my personal doctor and she said their training for Celiac was to show them a skinny man in boxer shorts and a huge stomach.  Saying if you see this, it is Celiac.  If it isn't in their playbook then they don't care.  Most call it an allergy with no mention of our immune system.  There is so much false information on the internet.  Then people don't understand why they can't get well and are acquiring more immune diseases. I mention this site to everyone.  Scott has working hard for the Celiac community.
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