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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.

My Diet Is Not Like Most Of Yours
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51 posts in this topic

I'm surprised many of you people are still alive, given the descriptions of what you are eating... I have been on a celiac diet since 14, so about 20 years. It has been refined to this:

Steamed or boiled rice and Lundberg ricecakes

Certain types of vegetables

Certain types of fruit

Certain types of raw fish (A few select Japanese restaurants in Vancouver)

Nichola Valley Honey & natural cane sugar

Certain types of St. Dalfour & Cascadian farms jams

Perrier water

Certain types of 100% natural juices

Green tea

Starbucks americano decaf cofee (first vice)

Cuban cigars (second vice) :)

That's been my entire diet for many years now. I have not been sick with even a cold in 5 years, and kept the same weight since 20.

I can't comprehend how some of you stay healthy eating all those starches, chemicals, and risk eating out at weird restaurants. And things like potatoes? Barley? rice flour? Beef , pork, chicken, eggs, milk?? That stuff would just destroy me :)

-cass

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different things work for different people. i think my quality of life would be much lower if i barely ate any variety in my diet (sorry but yours looks variety free!! heh) and if i never ate out with my friends/family or when travelling.

out of curiousity, what fruits and vegetables do you avoid?

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I can't comprehend how some of you stay healthy eating all those starches, chemicals, and risk eating out at weird restaurants. And things like potatoes? Barley? rice flour? Beef , pork, chicken, eggs, milk?? That stuff would just destroy me

I think that if celiacs are eating barley than there's a problem.......... :blink:

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Why do you say that potatoes, beef, chicken, pork, and eggs would hurt you? rather, are you saying you think they would hurt everyone, or is this specific to what you've learned about your body?

btw, are you taking a multi, as - if that is your FULL diet - it appears to be vitamin deficient (particularly B's, and possibly iron depending on how much fish you're eating).

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Yea, we all are different.

I rather like rice flour and potatoes, though.

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I don't take vitamins - and my diet is not deficient in any respect. Go get edumacated :P

Here are Veggies I DON'T eat:

Onion family

Garlic

Radishes

Turnip

Broccoli

Chillies

Beets

Cabbages

Sprouts

Rhubarb

Anything canned or frozen/packaged (except nori & tomatoes)

Eat leafy greens and seaweed.

-cass

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Do you eat tomatoes?

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Oh, I don't eat lasagna.

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Did you react to most of the gluten-free starches on the market???

This is one problem I've been having-After a while I noticed small reactions to anything pre-made I bought that was labeled as gluten-free. Once I switched to a completely whole foods diet, I haven't had a problem (other than the fact that it's boring and inconvenient).

Nadia

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coin-op, I don't think it's fair, or polite, so say I'm not "edumacated" based on that post. While my degree is not in nutrition (it is in the sciences, however, so I know how to read those studies relating to nutrition), I have done a lot of reading and learning on nutrition before and after going gluten-free, and it's a bit presumptuous of you to assume otherwise on such limited exchange.

The reason I mentioned it is because the diet you describe does appear to be low in some areas. Salmon (raw) has 0.8g of iron per 100g edible portion, and I'm guessing you eat spinach, which is a good iron source (2.7g per 100g edible portion), but that interferes with calcium absorbtion, and the green tea can interfere with iron absorbtion as well, so I would presume that you're not eating only spinach to get your iron requirement. (I'm certainly not going to argue the calcium route, as there is significant debate that the RDA of calcium is inflated due to protein consumption habits and that weight bearing exercise and other nutrients such as magnesium are more important.) As for B-12, raw tuna has 0.52ug per 100g edible portion, and it is found in only negligible quantities in vegetables, so it makes it difficult to get 2.4ug per day. (This is a vitamin that many people don't get enough of.) So I still think, that based only on the information that you presented, there is a distinct chance of that diet being nutrient deficient to a degree. If you're doing great on it, that's WONDERFUL! But because of it's limitations, anyone else who picks up that limited of a diet needs to be aware of the potential pitfalls.

I'm still curious about your particular issue with those foods you listed as always avoiding.

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This seems a little extreme, but I can understand if you've been on the diet for 20 years, that you might not have benefitted from new research. I was diagnosed recently, and am glad that I wasn't diagnosed 20 years ago, because Celiac's is becoming a better understood condition as doctors start to understand it better. As tarnalberry has pointed out, we still need to keep up the same nutrition as everyone else. This is actually not that much harder, except that we tend to miss out on the fiber. Which I'm sure we can all share stories about the "wonders" of realizing late one night that we haven't been careful about the amount of fiber in our diets...ugh! :P

Anyway, I would reccomend seeing a nutritionist who is familiar with the Celiac diet, and see what you are missing out on. My mom (who has Celiac's as well) has a great recipe for German Chocolate cake without all that dreaded gluten, Ok fattening as all get out, and probably not so good on the old ateries...but WOW GOOD!!!!!! :rolleyes:

Take care, and as the good book says (although I am taking it out of context) "eat, drink and be merry".

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Gosh I sure am sorry your body can't handle these things you list (BTW, I don;'t see where anybody on this list eats barley; that's an absolute no-no), but my body certainyl can. Give me a good ole' steak.

You have to eat what works for you, but just about anything (in moderation) works for me as long as it doesn't contain gluten. I have no other sensitivities at all. I don't really need a lecture.

richard

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I have been on a gluten-free diet for 13 years, and I have a lot of sensitivies that other celiacs do not (i.e. guar gum sets me off), but even I am not as limited as you. I really think you are limiting your diet to an extreme and I agree with the others that you are probably not getting the vitamins that you need. This forum is to help each other... not criticize or abuse... enjoy reading all the different topics and learn. Your diet will probably change for the better! :)

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coin-op

I am curious as to how you came to your present diet. Did you refine it over the years or did it start when you were diagnosed? Did a doctor or nutrionist help you?

Do you still see a doctor on a fairly regular basis to monitor your progress?

Alot of those vegetables you mentioned not eating are ones that cause gas problems with many people and if you stopped consuming them in the healing phase it may be that they were causing gluten intolerance type symptoms and brought on bad memories.

If you are happy with your diet, great. For me I am finding a whole new world of foods to enjoy. For breakfast I had quinoa flakes cooked like oatmeal with flaxseed, blueberries and raisins. Yum!

DK

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Hi,

It is interesting to see what everybody is eating these days. Thanks for sharing with us. I have had Celiac since the age of 8 and I am about to celebrate my 60th birthday in a few weeks. Only since eliminating almost all processed foods have I felt really great. For years I ate only meats, fruits, and vegetables, and that worked well, until the craving for sugar or ice cream became so overwhelming that I would totally blow all the good I had done by eating healthily for such a long time.

Now I have learned that my body can handle only a certain amount of carbohydrates (my family has a history of diabetes) so I have to limit fruits and vegetables as well. However, 7 years ago I discovered "The Carbohydrate Addict's Diet," by Richard and Rachel Heller, and now limit some carbohydrates to one hour a day, which limits insulin output.

It seems there are so many complex parts of good health, that it takes awhile to find out what works for each of us. What works for one doesn't always work for another.

I am less that five feet tall, and maintain my weight at about 105 pounds, and I feel full of energy and have a positive attitude, as long as I eat periodically, so I feel that I am finding out what works for me.

Thanks to each of you who shared what is working for you and how you are feeling at this stage of your recovery. Welda

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Hi,

It is interesting to see what everybody is eating these days. Thanks for sharing with us. I have had Celiac since the age of 8 and I am about to celebrate my 60th birthday in a few weeks. Only since eliminating almost all processed foods have I felt really great. For years I ate only meats, fruits, and vegetables, and that worked well, until the craving for sugar or ice cream became so overwhelming that I would totally blow all the good I had done by eating healthily for such a long time.

Now I have learned that my body can handle only a certain amount of carbohydrates (my family has a history of diabetes) so I have to limit fruits and vegetables as well. However, 7 years ago I discovered "The Carbohydrate Addict's Diet," by Richard and Rachel Heller, and now limit some carbohydrates to one hour a day, which limits insulin output.

It seems there are so many complex parts of good health, that it takes awhile to find out what works for each of us. What works for one doesn't always work for another.

I am less that five feet tall, and maintain my weight at about 105 pounds, and I feel full of energy and have a positive attitude, as long as I eat periodically, so I feel that I am finding out what works for me.

Thanks to each of you who shared what is working for you and how you are feeling at this stage of your recovery. Welda

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Hi., I am only into the diet for about 6 going on 7 weeks. I am using the "Breaking the Vicious Cycle" diet proposed by Elain Gottschall. I have the most trouble getting enough carbohydrates, as someone else mentioned, but am experimenting with various allowed kinds of beans like limas, baby and large, green beans, wax beans and purple beans (very good and prolific), romaine lettuce, carrots, am just trying out rutabegas, but think they are giving me gas, have been eating raw celery, but think I will try cooking it and just using a little in stuff., Beans probably give me gas, too, but it is hard to find things that don't do that.zucchini, and owinter squashes,can't eat potago tomato family.sed to eat yams and sweet potatoes, but they are not allowed on the SCD diet. I eat beef, but may quit that or limit it severly as my total cholesterol last Tues. was 260, on the high side. Triglycerides only 76, down from close to 300. The ldl has gone up , can't remember the amt. HdL was also up from last year, though. Dr. is talking about putting me on medication, which I don't want to do. Other foods I eat regularly are canned salmon and mackerel, pollock, eggs, (not often), olive oil, peanut butter, the healthy kind, pumpkin, turkey, chicken (skinned and defatted), bananas, cantalope, a pear now and then, am experimenting with mushrooms, honey (very little) have eaten a mango in thirds or fourths now and then. I also use apple cider. Sometimes it seems to quiet my abdominal pain, sometimes it annoys it. I am not very original in my cooking, but am learning. Cheers, Ruth

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Coin Op/Cass,

It's great that you've found a diet solution for your celiac disease. My husband has had undiagnosed/misdiagnosed celiac disease for 26 years and under no circumstances can tolerate fruits, vegetables, soy and beans . Therefore, his only choices are plain meats & fish, dairy corn , rice, potatoes and other gluten-free starches - for now. He's only been diagnosed and gluten-free since 10/03. If he were lucky enough to have been diagnosed early like you, perhaps he would not have to be so dependent on what I described as his only choices. His survival is paramount and whatever has to be done we will do. The fact that he went so long mis-diagnosed is what prevents him from having a diet like yours.

I think the others on this site/board will agree with me, that there is no one gluten-free diet that is better than another. There should be no competition over diets, just a genuine desire to help each other get and stay healthly, to share information and to provide encouragement and empathy to one another during a time of crisis. There is no room for criticism or degrading of a fellow Celiac's gluten-free choice of food, whether it be eating out in a restaurant or at home - as long as it's gluten-free. If you feel that it's your place to "edumacate" us about the dangers of consuming animals, then you've chosen the wrong forum.

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Hey Deb!!

Amen. I'm with you. Do you think we forum members have scared Coin Op off? She hasn't posted since the 12th. Maybe she was banned from the site...

Take care,

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Ruth: Beano is gluten-free/CF and really does work. I can enjoy all the gassy vegies and beans when I use those tablets. I really prefer low glycemic bean carbs to the gluten-free pasta, grains and pasta carbs, even though I've controlled my weight enough to not worry about carbs per se. Without beano I'd miss all those healthy vegies and bean carbs. :unsure:

BURDEE

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gluten-free is hard enough

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Burdee and Others, I have not been diagnosed yet either, probably won't be. However, I decided that the diet is worth trying. At least it is a starting place for testing out various foods from a limited number. I will be spending less time tutoring at school this year, so will have more time to investigate and explore to find out what works and what doesn't , if indeed this is celiac or even food related. I haven't tried Beano for awhile. It's good to know that it is gluten-free, Burdee. I don't get alot of gas, but it does tend to get stuck, especially on the right side of my abdomen. The left side is mostly completely comfortable. I sometimes wonder if I have adhesions on the right side. When I had my gall bladder surgery, the surgeon said he had to cut through alot of tough adhesions. Trouble is that adhesions tend to grow back, and even new ones form with more surgery. I have had a hysterectomy and appendectomy. I find I am getting even more constipated with the gluten-free diet than I was before and that aggravates my burning that starts under my right center rib cage and spreads across my upper ab from there. The real sore spot is under my right center rib cage. I tend to change too many variables in my diet and otc stuff and then I don't know for sure what did what. Just now am bugged because my cholesterol came back with 178 for LDL. Triglycerides down, though to 76. Can't figure out about the LDL since I am not eating much fat at all. Maybe because I am not eating oatmeal? Anyone know of a source of gluten-free oatmeal? Or is oatmeal considered altogether non-gluten-free now? I do have more get-up-and go than I did pre gluten-free. Think maybe my mind is functioning a little better. Cheers! Ruth

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One of the tricks I learned from dieting, for constipation take something like Metamucil before each meal. When you're not getting the grains like your system is used to, this will really help. It's just psyllium husks with flavoring and a little sugar. People swear by it.

Or, I've a great recipe for gluten-free flaxmeal pancakes/waffles that uses metamucil (or psyllium husks). Even my 15 year old thinks these are terrific. The flaxseed meal is also a terrific source for all kinds of vitamins, oils, etc. :)

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Not much to add in the way of food, but just to let you know, coin-op hasn't been banned from the boards...2/3 warned, so close, but not banned...so this lack of posting was voluntary

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FreyaUSA, Thanks for your constipation tip. Unfortunately, I had used Metamucil and Celucil, etc. for years previously without any change in my bowel pattern. I am beginning to think maybe I have adhesions in my right side. I seem to feel gas building up there, or pressure from stool collecting. No pressure or pain in my left side, but intense burning in right side. Getting rid of gas and stool seems to relieve the burning for a time, but it soon builds up again. I wonder if the pressure contributes, at least to this burning . I may try the psyllium again. Would like the flaxseed recipe. Thanks again!

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      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.  
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