Any One Over 60 Living With Celiac

[Guest bananababy]

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

[irish daveyboy]

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

Hi,

I am 60 yrs of age, I was diagnosed at 57 in Nov 2005, it was a shock in the begining,

but I decided rather than lay down and die, that I would do something about it.

.

I couldn't eat what passed for commercially available Gluten Free Foods,

the bread was Gluten Free WF DF Yeast free and basically 'Taste Free'.

.

The cakes were overloaded with sugar to disguise the gritty after taste.

.

Pizzas were like lumps of 'Cardboard'.

.

So I set about teaching myself how to bake, and now I devise my own Gluten Free Recipes.

.

There's a lot of information on my Website and it may be worth your while to have a look.

.

Best Regards,

David

[Guest bananababy]

Hi,

I am 60 yrs of age, I was diagnosed at 57 in Nov 2005, it was a shock in the begining,

but I decided rather than lay down and die, that I would do something about it.

.

I couldn't eat what passed for commercially available Gluten Free Foods,

the bread was Gluten Free WF DF Yeast free and basically 'Taste Free'.

.

The cakes were overloaded with sugar to disguise the gritty after taste.

.

Pizzas were like lumps of 'Cardboard'.

.

So I set about teaching myself how to bake, and now I devise my own Gluten Free Recipes.

.

There's a lot of information on my Website and it may be worth your while to have a look.

.

Best Regards,

David

[Guest bananababy]

I hope I have it right this time . well in case I dont and some one see's this can you tell me how I use reply ( I'm new to computers ) and if I do I wanted to say thanks to David I am going to your page or somthing just as soon as I figure out how to get their thanks so much for taking the time to reply, and if this does not show up where it's supposed to go and any one see's it I follow instruction a lot better than sitting here pushing buttons David when I find my way I will let you know ok again thanks all the best ally mac

[mushroom]

I self-diagnosed at 67 after no one would take my symptoms seriously all those years, starting in high school. Doctors must really think we are a bunch of whingers or nut-cases to ignore us for so long. I don't know if they train them in medical school to think we are all just making these things up to get attention.

[irish daveyboy]

I hope I have it right this time . well in case I dont and some one see's this can you tell me how I use reply ( I'm new to computers ) and if I do I wanted to say thanks to David I am going to your page or somthing just as soon as I figure out how to get their thanks so much for taking the time to reply, and if this does not show up where it's supposed to go and any one see's it I follow instruction a lot better than sitting here pushing buttons David when I find my way I will let you know ok again thanks all the best ally mac

.

Hi Ally Mac,

Just a quick word, to access my web site, click on my user name (Irish Daveyboy)

a drop down menu will appear, click on view member's profile.

.

Scroll down (Along the L/H/S you will see Visit My Website) click on this and you're there.

.

Best Regards,

David

.

P.S.

I can't link you from here it's against board rules (I found that out the hard way).

.

[codetalker]

I self-diagnosed at 67 after no one would take my symptoms seriously all those years, starting in high school. Doctors must really think we are a bunch of whingers or nut-cases to ignore us for so long. I don't know if they train them in medical school to think we are all just making these things up to get attention.

Doctors ignored my symptoms for over 30 years. One actually sat down with me in his office and in a very concerned and sincere manner asked if I had ever considered that I was simply a hypochrondriac. He suggested psychological counseling.

Of course, nowadays the DX and treatment situation is even worse. This can be seen by listening to drug ads. When I was growing up, the typical side effects of medications were headache, nausea and/or vomiting. Today, typical side effects are liver damage, heart attacks, birth defects, gambling and sexual urges, seizures, even death. A recent ad takes this a step further. It does not use the word "death". Rather, it substitutes the phrase "fatal events" as one of the side effects. There was a time when treatment was based on the idea of "first do no harm". That has been replaced by marketing and profit. Doctors now rank among the most dangerous people in our society.

All things considered, celiacs are better off self-diagnosing with the help of boards like this one. Doctors should be reserved for little more than broken bones and stitches.

[darlindeb25]

Well, I am 53, went gluten-free 8 yrs ago. My sister aslo went gluten-free 8 yrs ago, she is 50. Our dad, after being very ill for some time, and having stomach issues for years and years, and years, went gluten free at age 69. That was 4 yrs ago this month. He was down to 135#, from nearly 250#. It took some time for him to feel better, now, he is doing pretty well.

[Piccolo]

Bananababy,

Welcome to the club. I am 60. I am self diagnosed and went gluten free at 58. It has taken me at least a year to recover. My big side effect of going undiagnosed is I have severe osteoporosis. I was always told you have IBS live with it, but my colon was hurting all the time. I am nearly pain free now. I only start hurting when I get glutened.

It does get better.

Susan

[Mack]

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 am 68 years young, and was told this summer that I hve Dermatitis Herpetiformis, which has to do with celiac, and it is very hard to give up all the foods that you are use to. I had also give up idozide salt,food high in idoine, and find vit. that did not have idoine, because if I by some chance eat something with gluten, idoine help make the blister break out. I love chines foods which I can not have any more, but you find a way to cope.

[Judyin Philly]

HI and welcome.

I just saw this thread and see you did it Nov14th

there are alot of us here over 60 I think

I'm 67 and went 20+ years undx'd with IBS, of course.

I've been gluten-free & s/f 3 1/2 years, df and & casein free for the most part but adding a tiny back in.

There is so much info on the Scott's main home page.

It will get easier as the time goes on

We'll help you all we can.

Judy in Philly

[Dittenheim]

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

I was finally diagnosed at age 53 after specifically asking my gastroenterologist to test me for Celiac. After ten years of an IBS diagnosis and feeling crappy even while avoiding trigger foods I had enough. I wasn't a bit surprised at my diagnosis when the biopsy came back positive.

I've now been gluten-free for five years. I really miss Dunkin' Donuts Bavarian Creme!! And at this time of year I miss Pfeffernuesse cookies!!

I also am hypo-thyroid. My doctor is now doing a study on a possible Celiac-Thyroid link. Any others out there with both?

[sixtytwo]

Yes, there are a lot of us with celiac or a gluten intolerance that also have problems with thyroid. I was diagnosed with a thyroid problem first, then fibromyalgia and then figured out the gluten thing. I have been away from this site for a long time, but decided to come back and have a look today. Glad I did. I was cheating a little and have been having terrible problems with migraines, I think I need to get clean with the gluten and see if that is the problem. I would like to talk to someone who made the migraine/gluten connection. Barbara

[home-based-mom]

I've been 60 for almost a month now so I guess I qualify!

Anyway, I remember having allergy tests as a kid but I don't remember what for. (Goes with being over 60, don'tcha know . . )

I had digestive issues in my 20's. That doctor with the high-priced reputation told me he couldn't find anything wrong with me but I must have thought there was something wrong because I kept coming back. He suggested I go elsewhere but I didn't. I figured out myself the problem would go away as long as I didn't eat All Bran. Funny thing is I still can't eat bran - even rice bran.

About 3 years ago a new and different set of digestive issues developed that I figured out happened everytime I ate wheat. I began to learn about gluten and realized that was the problem. Unfortunately by the time I had learned about testing while still eating gluten and all that it was too late. There is no way I am up to a gluten challenge so I will not have an official diagnosis, but that's OK.

So here I am, 60 and living gluten free just fine, thankyouverymuch!

[nasalady]

Yes, there are a lot of us with celiac or a gluten intolerance that also have problems with thyroid. I was diagnosed with a thyroid problem first, then fibromyalgia and then figured out the gluten thing. I have been away from this site for a long time, but decided to come back and have a look today. Glad I did. I was cheating a little and have been having terrible problems with migraines, I think I need to get clean with the gluten and see if that is the problem. I would like to talk to someone who made the migraine/gluten connection. Barbara

Hi Barbara,

You and I have a lot in common. I was first diagnosed with asthma and psoriasis as a teen, then with Hashimoto's thyroiditis in my thirties, now (in my early 50s) with autoimmune hepatitis, fibromyalgia, rheumatoid arthritis, and, of course, celiac disease.

I've been gluten free for approximately 3 weeks now. My very first sign (usually within 12 - 24 hours) that I've been accidently glutened is a splitting migraine headache. It feels like the top of my head is coming off! I also have blurry vision and sometimes vertigo. The diarrhea and other gastric symptoms follow later, within 48 hours.

It's just a guess, but based on my experiences I'd say you're absolutely correct in making the connection between your headaches and eating gluten.

Take care,

JoAnn

[JJoan]

Hi Barbara,

You and I have a lot in common. I was first diagnosed with asthma and psoriasis as a teen, then with Hashimoto's thyroiditis in my thirties, now (in my early 50s) with autoimmune hepatitis, fibromyalgia, rheumatoid arthritis, and, of course, celiac disease.

I've been gluten free for approximately 3 weeks now. My very first sign (usually within 12 - 24 hours) that I've been accidently glutened is a splitting migraine headache. It feels like the top of my head is coming off! I also have blurry vision and sometimes vertigo. The diarrhea and other gastric symptoms follow later, within 48 hours.

It's just a guess, but based on my experiences I'd say you're absolutely correct in making the connection between your headaches and eating gluten.

Take care,

JoAnn

[JJoan]

Hi,

I'm still trying to figure out how to post--sorry. I am 62 and just diagnosed last month. After years of complaining of lactose intolerance and ongoing digestive problems, my family doctor retired and I got a young new one. He referred me to a specialist who is wonderful. He quizzed me until he had narrowed it down to Celiac Disease and told me to eliminate it from my diet. They drew quite a bit of blood for testing, but I haven't got the results yet but my symptoms magically went away, including the lactose intolerance.

I had an abdominal ultrasound and the technician said there were a lot of cysts. I wonder if they are caused by Celiac Disease?? I dont' go back to the specialist until Jan. 19th to see what's next.

Anyway, I would like to know about the migraine/Celiac connection, too. I have had migraines for years. I am also getting osteoporosis and am on antidepressants for chronic depression--all listed side effects of this Disease.

Joan

[Grrranny]

Dear Codetalker,

I am assuming you are a programmer, ^ your handle. It was nice, reading your entry. I've been feeling a little opinionated on these boards because I've been a medical worker for many years, and I think that the medical profession is being entirely derelict in its duty towards Celiac victims. We have become victims of our medical professionals. They feed us armloads of drugs, which give us so many side-effects that we need another load of other drugs just to survive the first ones. And STILL we do not get any diagnosis? This can go on for many years. It really is unacceptable. Reading your entry made me feel some corroboration.

I am sorry to hear that you sought a diagnosis for so very long before taking authority. I had several relatives who died of it, and I spent a lifetime in varying stages of dying, but it was not until I saw a little boy having a seizure on a medical show, and did a ton of research, that I began to realize that we all had this same problem. That was just 2 years ago,(after ten years seeking a diagnosis) and my health is finally improving. By the time I'm 70 I might actually be really healthy again. YAY. I wish you all sorts of good luck in healing yourself. Take thiamin, which gets depleted in Celiacs, and can cause dire consequences if not treated.

There is a very real adjustment going on, which the medical community is well aware of. Our culture grew up with a view of doctors that was paternalistic, pedantic, and almost religious in nature. They knew, and we did not. Therefore they were always right, and their opinions must be respected over our own ignorant assumptions. Due to the availability of information, the paradigm of medicine is rapidly changing, and the medical community is not equipped to deal with the changes, not suddenly. They desire to preserve their historical position of authority, but are unsure of where to take it beyond that. Their former solid ground has become somewhat muddy.

Currently, many people have a good education in the biological sciences, even if they are not physicians. Even without formal education (which is no guarantee of actual intelligence) many folks are informing themselves very well for their own enlightenment. Point being, the old assumption that the patient was uneducated is not true to the same extent any longer. The tools of information are accessible to most of us, and we've been using them, a lot. The traditional stature of the physician has been somewhat demoted to more ordinary. The traditional stature of the patient as ignorant has been upgraded, for the most part, at least to where he CAN be informed, although not yet to where he must be respected, which is a continuing problem.

There is also the question of knowledge. I do a lot of online research, and keep myself very well versed in everything I can get my hands on. My doctor is very busy at the hospital every morning, and sees patients at his office every afternoon. He does not have all that much time for research of any kind. If he does not read every medical journal, cover to cover, he may be unaware of recent developments in fields other than his specialty.

While the traditional view, that you really cannot explain everything to a patient without giving him a medical education, is actually accurate, the art of medicine itself has become little more than alchemy with dangerous chemicals. Aside from the surgical arts, most medicine is just that, medicine. The pharmaceutical company tells the doctor what a drug does, and what it is to be used for, and the doctor prescribes it to patients, who take it and get better, or not, then he prescribes what you may need to correct for side effects. In everything, nobody has accounted for the effects of so many drugs taken by so many people for so many years. We are only just beginning to see problems there, that we may need alternatives to these drugs.

The alternatives are being explored by everyone seeking real help, but they are not all nailed down yet. That is just in its infancy. The doctors who are treating you now did not invent the medical field nor its style of function, and are struggling with the transformations as much as their patients are. It's going to take time for the whole civilized world to sort it all out to our satisfaction. A long time.

Sorry to have gone on for so long. Thank you, again.

Grrranny

Doctors ignored my symptoms for over 30 years. One actually sat down with me in his office and in a very concerned and sincere manner asked if I had ever considered that I was simply a hypochrondriac. He suggested psychological counseling.

Of course, nowadays the DX and treatment situation is even worse. This can be seen by listening to drug ads. When I was growing up, the typical side effects of medications were headache, nausea and/or vomiting. Today, typical side effects are liver damage, heart attacks, birth defects, gambling and sexual urges, seizures, even death. A recent ad takes this a step further. It does not use the word "death". Rather, it substitutes the phrase "fatal events" as one of the side effects. There was a time when treatment was based on the idea of "first do no harm". That has been replaced by marketing and profit. Doctors now rank among the most dangerous people in our society.

All things considered, celiacs are better off self-diagnosing with the help of boards like this one. Doctors should be reserved for little more than broken bones and stitches.

[Grrranny]

Dear Joan,

Hi. Welcome to the club! Celiac depletes the vitamin thiamin from your body. Thiamin is very important, and not having any can cause dire consequences. These can include heart failure, migraines, lung problems, nerve problems, and many other serious issues. Try taking 50mg thiamin tablets for a few weeks, and your migraines may clear up. If your doctor complains, tell him to look up Beri-Beri, a disease caused by thiamin deficiency.

Thank God you got that lovely doctor to help you. You have a long road ahead of you, but it is doable. The main thing is to avoid "those" foods, and read the small print on packages, looking for the terms: Wheat, wheat starch, food starch, starch, wheat germ, wheat bran, you get the idea. If a package states starch in the ingredients, but not what kind of starch, it may be wheat starch. You do not buy that one. Never eat anything with gravy on it when you are out and about. Most commercial gravies are made with wheat flour. Very young people have a much harder time than we do, because most of them do not know how to cook, which is really necessary with Celiac.

If you miss the wheat products, try eating a lot more vegetables and fruits. They are better for you than grains anyway, and even though they are not as convenient, they will aid in bringing up your health level quicker. Try some things you don't usually eat. For the first little while, indulge yourself with goodies you know you CAN have. That makes the whole process less stressful, and more fun. Oh well, good luck with everything. You'll have ups and downs, but stay away from wheat, and it will be mostly ups. Give or throw away anything in your cupboards that has wheat in it. Trust me.

Hope your holidays were wonderful. My daughter made our Christmas gravy with corn starch, so I could have some. Wasn't that nice?

My email is marizara_2000@yahoo.com and you are entirely welcome to email me any time. I will help you if you need it. No problem. Sincerely, good luck Joan.

Grrranny/Marie

Hi,

I'm still trying to figure out how to post--sorry. I am 62 and just diagnosed last month. After years of complaining of lactose intolerance and ongoing digestive problems, my family doctor retired and I got a young new one. He referred me to a specialist who is wonderful. He quizzed me until he had narrowed it down to Celiac Disease and told me to eliminate it from my diet. They drew quite a bit of blood for testing, but I haven't got the results yet but my symptoms magically went away, including the lactose intolerance.

I had an abdominal ultrasound and the technician said there were a lot of cysts. I wonder if they are caused by Celiac Disease?? I dont' go back to the specialist until Jan. 19th to see what's next.

Anyway, I would like to know about the migraine/Celiac connection, too. I have had migraines for years. I am also getting osteoporosis and am on antidepressants for chronic depression--all listed side effects of this Disease.

Joan

[Grrranny]

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 turned 63 on Dec. 23. Had symptoms since early childhood, but it only got really bad after I was 40. From 50 to 60, I spent most of my time trying to not die. Was finally diagnosed two years ago, and I have been improving every day since then. After a while I noticed that I keep feeling better all the time. Must have been a lot sicker than I thought I was. I did have congestive heart failure from it. Even that's better. I think dealing with dietary stuff is easier for us than it is for younger people, because most of us of 60+ years know how to cook. And you do have to cook a lot with Celiac. Sorry about the earlier posts, did not read your request. Oops.

[Sharon Marie]

I am 67 years of age and was diagnosed last November. So its been 1 year. I started out confident I could follow the diet and that it would be a snap for me since I never did like breads or starchy foods. What a shock I was in for! My biggest obstacle is the one of cross contamination. I still haven't learned just how far I have to go. I do hope someone can give me some guidelines or advice on cross contamination.

[nasalady]

I had an abdominal ultrasound and the technician said there were a lot of cysts. I wonder if they are caused by Celiac Disease?? I dont' go back to the specialist until Jan. 19th to see what's next.

Hi Joan, and Welcome!

I'm so glad you ended up with the new doctor who figured out what was going on!

I have read something about polycystic ovary disease being common in women with celiac disease. Are you talking about cysts on your ovaries?

Anyway, I would like to know about the migraine/Celiac connection, too. I have had migraines for years. I am also getting osteoporosis and am on antidepressants for chronic depression--all listed side effects of this Disease.

All I know about the migrain/celiac connection is that when I avoid gluten my headaches are less frequent and just not as bad in general. They haven't gone away completely yet, but I've only been gluten free for about 5 weeks now. I too have osteopenia, but am now on Fosamax and calcium.

Are you being treated for osteoporosis?

Take care,

JoAnn

[nasalady]

I am 67 years of age and was diagnosed last November. So its been 1 year. I started out confident I could follow the diet and that it would be a snap for me since I never did like breads or starchy foods. What a shock I was in for! My biggest obstacle is the one of cross contamination. I still haven't learned just how far I have to go. I do hope someone can give me some guidelines or advice on cross contamination.

Hi Sharon Marie,

I'm having the same issues. In my house, we've ALMOST gotten rid of all gluten-containing foods...we're still in the process. So there is still a risk of cross contamination from the kid's crackers and stuff like that. Also, I haven't yet thrown away and replaced all plastic ware and wooden items from the kitchen, which is an important step. I have bought myself a cutting board that is "mine", which is gluten free, but there's a lot more that needs to be done, like replacing the toaster, any pots and pans with scratches that might harbor gluten, and all plastic bowls and containers and utensils. Anything porous that might have gluten inside of the pores has to be replaced.

Unfortunately I'm in a wheelchair (fibromyalgia and rheumatoid arthritis) and can't do it all myself. My husband is "frugal" (which is the polite way of saying cheap ) and doesn't like the idea of throwing away good kitchen items or food that he could eat even if I can't.

I'm making progress though. We just threw out all gluten bread and I made a loaf of gluten free bread that my husband actually likes! Now we need to find crackers and chicken nuggets for the kids that are gluten free.

The scariest thing is realizing that anyone who has touched a gluten-y food can contaminate anything else that they touch....doorknobs, faucet handles, refrigerator door handles, etc. Or that I can be glutened by a kiss from my husband if he's eaten gluten without brushing his teeth. So I really think I'm going to continue to have problems until we go 100% gluten free as a family.

Good luck!

JoAnn

[Sharon Marie]

Hi Sharon Marie,

I'm having the same issues. In my house, we've ALMOST gotten rid of all gluten-containing foods...we're still in the process. So there is still a risk of cross contamination from the kid's crackers and stuff like that. Also, I haven't yet thrown away and replaced all plastic ware and wooden items from the kitchen, which is an important step. I have bought myself a cutting board that is "mine", which is gluten free, but there's a lot more that needs to be done, like replacing the toaster, any pots and pans with scratches that might harbor gluten, and all plastic bowls and containers and utensils. Anything porous that might have gluten inside of the pores has to be replaced.

Unfortunately I'm in a wheelchair (fibromyalgia and rheumatoid arthritis) and can't do it all myself. My husband is "frugal" (which is the polite way of saying cheap ) and doesn't like the idea of throwing away good kitchen items or food that he could eat even if I can't.

I'm making progress though. We just threw out all gluten bread and I made a loaf of gluten free bread that my husband actually likes! Now we need to find crackers and chicken nuggets for the kids that are gluten free.

The scariest thing is realizing that anyone who has touched a gluten-y food can contaminate anything else that they touch....doorknobs, faucet handles, refrigerator door handles, etc. Or that I can be glutened by a kiss from my husband if he's eaten gluten without brushing his teeth. So I really think I'm going to continue to have problems until we go 100% gluten free as a family.

Good luck!

JoAnn

Must we wear gloves when we go out in public? Live in a bubble maybe? I am sorry for sounding so negative. We can't expect everyone we come in contact with to be gluten free....

I also have fybromylgea and arthritis and horrible leg and foot cramps. And depression caused by feeling so alone with this condition. I feel like people think I am paranoid about it all.

Thanks JoAnn for responding.

Good Luck to you also

[home-based-mom]

Must we wear gloves when we go out in public? Live in a bubble maybe?

If you spend much time thinking about it, you'll probably want to! Everywhere you look you see people eating gluteny finger foods and you just *know* they are touching the escalator railing, atm pad, grocery cart handle, and who knows what else! A person could easily become neurotic, never mind paranoid!

That ain't no way to live so just remember to keep your hands away from your face (extremely difficult for me!) and wash them as often as possible.