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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Celiacs On Gf Diet For More Than 20 Years
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11 posts in this topic

I was diagnosed with Celiac more than 30 years ago and have carefull maintained a gluten free diet for all those years. Although my symptoms improved, I have never been completely symptom free.

I am now 68 years old. My health and energy level are excellent, but my primary gastrointestinal symptom (chronic constipation and gas) has gotten worse.

Is there anyone else out there who has maintained the diet for many years? Is it still helping? Also, I'd love to share experinces with someone who has lived with this dietary restriction for many years as I have.

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Read your message and I wonder - do you follow up regularly with your doctor? Have they checked to see if your blook work is gluten free? How about an endoscopy? Since Im newly diagnosed, I'm not even sure how I should be following up to make sure I am gluten free.

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Maybe you have other food intolerances. I am finding out that I have lots of food intolerances since I foud out about the gluten. I also have irritable bowel from non gluten foods. maybe you are reacting to other foods. Why not keep a food diary and right down everything you eat or drink and then how you react to it. that has really been helping me to figure things out. Now.....I just have to feel better! :D

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What do you eat? I've been diagnosed for a little over 2 years now, and the only time I get constipation or gas is if I've ingested even the tiniest amount of gluten. I'm curious to find out what your diet is like.

Nadia :P

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I'd also second the idea of other food intolerances. I had to eliminate dairy as well (oh, how I'd love some real cheese!) and found that helped. (But I've only been on the diet for around a year and a half.)

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Are you getting enough fiber? I have constipation and gas problems when I don't get enough fiber.

I am glad to hear from long-term celiacs, it tells me that there is hope and life without wheat!

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I'm just curious about how it was 20 years ago starting to be

gluten-free. It must have been incredibly hard. Did you get

any good advice from Drs, dietiticians, books? What about food

labeling? Your food choices must have really been limited.

I can see the changes in the labeling since being diagnosed

13 months ago. The internet, especially this site, and all of

the good people on it, have been a lifesaver for me. At first

I was too sick to post and ask questions. I just kept reading

other people postings even if it didn't pertain to my problems

and I gradually started to feel better. Thanks to all of you!

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I'm just curious about how it was 20 years ago starting to be

gluten-free. It must have been incredibly hard. Did you get

any good advice from Drs, dietiticians, books? What about food

labeling? Your food choices must have really been limited.

I can see the changes in the labeling since being diagnosed

13 months ago. The internet, especially this site, and all of

the good people on it, have been a lifesaver for me. At first

I was too sick to post and ask questions. I just kept reading

other people postings even if it didn't pertain to my problems

and I gradually started to feel better. Thanks to all of you!

laurie, I agree with all that judyo5 said and would LOVE to hear your story. I can't imagine having this disease 30 yrs ago!! This site saved my life as I felt so isolated from the REAL WORLD and have gone thru major depression several times since my dx. But, each time, this site was here and everyone was going thru something similiar and it helped me to see that there is life after a dx. I was very grateful for a dx and to know that I could improve but it was still hard when friends got tired of my complaining and the fact that we couldn't even have a good visit because my trips to the bathroom were so frequent. Friends even quit coming to visit and it was so depressing, but, the site and all these wonderful people were still here to share their experience. Still, family and friends keep saying thigs like, "I think you could really eat stuff, if you just would" or "just a little couldn't possibly hurt" or " you and that diet" sometimes, I just want to throw up both hands and quit! That's what I did at Thanksgiving- a simple piece of turkey, like everyone else, at a restraunt. But... I'm the one who was sick for 2 1/2 weeks over it, not them!! Sorry, I'm rambling again but please do share, we'd love to hear from you and others who having been at this longer and have stories to share. HAPPY HOLIDAYS EVERYONE!! granny

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Well, I haven't been gluten-free for that long (and only because of a positive IgA test), but HAVE been wheat free for over 25 years now, and I'll tell you, yes we've come a long way. There was rice cakes back then but they were hard to find. There wasn't much of anything that was good tasting in the way of gluten-free/WF products. For years I ate spelt and kamut but now in retrospect I don't think I should have. I DID eat a lot of, and still do, corn tortillas. But now I bake my own gluten-free bread and other goodies. I hate it because at an age where I should be eating out I'm having to spend more time in the kitchen, plus hauling a lot of my own food with me.

I think you should be commended for being able to be that strict for so long. For me I could cheat a little about once a week and get away with it. When I over did it I'd get esophageal spasms and hives..I lived on Benedryl for all those years, but am now off it because I do believe the long term use of it caused my RLS.

Being wheat free was a walk in the park compared to this eating gluten-free!!! It is so much more complicated!! I feel like I should have gone into food chemistry as a career!!

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Hi,

I just turned 60 and have had symptoms of Celiac since age 8, though I never had a name for my condition until a few years ago. In 1978 I was hospitalized with an ulcer, spastic colon, and asthma (I had had asthma since the age of 8), and I had to quit teaching for awhile, though I had worked so hard to earn my degree. The stress of a divorce at that time seemed to send me over the edge healthwise, and I determined then to find the cause of my distress, something that doctors, specialists, nurses, and hospital staff had been unable to do. I was in my early 30s at the time. First I eliminated wheat and other grains and that helped, then eventually quit all milk and dairy products, and eventually eliminated egg whites and yeast. In 2001 I was diagnosed with Celiac, and I finally found this website. I cried the first time I signed on, full of relief that I wasn't the only one in the world suffering the way I had for so many years (by then I was in my 50s).

Here I learned that preservatives, modified food starch, casein, whey, etc. were often responsible for causing distress, and eliminated those. I feel pretty good now, eating only meats, fruits, vegetables, legumes, nuts & seeds. I have a strict regimen of using my breathing machine and taking my asthma medication, and all in all I now consider that asthma has been my best friend, since any time I ingest the foods which I am intolerant of, within 15 minutes I am wheezing profusely.

Let me add that I felt lost and alone in a wilderness of isolation during the years when I first attempted to change my diet. Few people understood my motivations, and many labeled me a hypochondriac or even crazy. Here is the good part: My faith in God increased as I sought and found relief, and I realized I wasn't alone here on Earth; I learned to turn my back on people who didn't understand, after putting forth every effort I could to help them understand; I became a capable, learned person about health and diet issues, and became more open-minded when confronted with others who were struggling with unknown food allergies or illnesses; I became a more compassionate person all in all.

I hope this helps. Welda

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I've been diagnosed about 11 years ago. I only have a problem if I accidentaly get even the tiniest bit of Gluten or dairy. I think I must have yesterday becauseI'm swollen and stuffy today. I'm positive I didn't get any Gluten, but must have gotten some dairy. Also you might be reacting to preservatives or salt. I even have a problem with Brown Rice, but can eat the white Rice. Maybe try an elimination diet for a couple of weeks and see what you are reacting to. Judy <_<:rolleyes::huh:B)

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    • Weird Reaction
      Hi Richie I've put the above in quotes as you have described in the first and second sentence how I felt six months prior to my DX.   In my own case, in the end I concluded it was anxiety after consulting Dr Google!  It was such an alien feeling to me, I couldn't even think what it was, particularly as life was pretty good at the time.  Anxiety is a problem for a lot of celiacs prior to diagnosis, and often after glutening after going gluten-free. You mention breathlessness, this of course can be for reasons such as anaemia (again a common celiac problem, I had this prior to DX) but of course also can arise if you are anxious.   Re 'gluten free' - Flowerqueen is right, from what I have read on this forum some people really do seem to react with less than 20ppm.    But perhaps some other things to consider...  could there be something wrong with the batch you have consumed?  Might it be worth contacting the manufacturers?   That said, you could , as Flowerqueen suggests, have a problem with another ingredient, in the product or something else you consumed. In the past I have had a terrible reaction - fever, trembling, diarrhea, stomach cramps that lasted up to three hours the last three times I ate..... broccoli, of all things.    Who would have thought that possible?  I have often thought I should try it again, just to be sure it was the broccoli, as it is a 'super food' that I ought to have in my diet, that I like very much, but the thought of having such a reaction again has put me off. I do hope you will find some answers soon.  
    • Weird Reaction
      Hi Richie,  I've not heard of this drink before, as I live in the UK, but any drink made from barley is something you should avoid.  There's a brand in the UK that makes lemon and barley water and orange and barley water and Coeliac UK say it is not safe for people with Coeliac disease.  (Our labelling laws in the UK changed a couple of years ago).  You say the drink you had was under 20 ppm, which is acceptable (usually) for coeliacs, but a lot of people are super-sensitive to gluten even in very small amounts.  I recently had a similar problem with something which was supposed to be okay for coeliacs, but when I checked the website of the product, for all it said there were no gluten containing ingredients, it was produced in an area where gluten was present, which was enough to put me off and must admit, the symptoms you describe sound very much like I experienced at the time.  (Personally I'd be avoiding that particular drink like the plague from now on). One other thing though,  have you checked the ingredients to see if there could be anything else in it which you may be intolerant to? 
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      I have not. I'll talk to my doctor about it
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