10 replies to this topic

[laurie]

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.

[bklyn]

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.

[mela14]

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!

[Nadtorious]

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

[tarnalberry]

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.)

[plantime]

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!

[judy05]

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!

[granny]

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

[kactuskandee]

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!!

[wclemens]

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

[Born2run2]

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