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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.

Dietician Said Not To Go Gluten Free If Negative Results
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15 posts in this topic

Hello Everyone

I was diagnosed with celiac disease with a positive blood test and Endoscopy and went to a Dietician for some advice. What she said struck me as odd and I wanted some of your opinions. I was asking about my husband having similiar GI issues but he had tested negative (blood test only) She said that people who have not had positive diagnosis should NOT do a gluten free diet!!!

I did not ask "But what about false positives?" I figure if being gluten free makes you feel better than why not? I am just wondering why she would have said that. When I did ask her why she said because gluten-free diets are too restrictive and you should only do it if you have that DX for certain..... What do you all think???

Harley <_<

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I find that pretty odd, too. There's definitely the possibility of a false negative, and gluten intolerance without celiac. I think she's probably just trying to say it is a challenging diet for anyone, let alone someone who hasn't had a formal diagnosis. That being said, if you have to live that way, it would be a lot easier for him to try the diet as well. I say, forget what she said and he should give it a try :) My husband does it without a diagnosis, just because I do the shopping :)

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Hello Everyone

I was diagnosed with celiac disease with a positive blood test and Endoscopy and went to a Dietician for some advice. What she said struck me as odd and I wanted some of your opinions. I was asking about my husband having similiar GI issues but he had tested negative (blood test only) She said that people who have not had positive diagnosis should NOT do a gluten free diet!!!

I did not ask "But what about false positives?" I figure if being gluten free makes you feel better than why not? I am just wondering why she would have said that. When I did ask her why she said because gluten-free diets are too restrictive and you should only do it if you have that DX for certain..... What do you all think???

Harley <_<

If she thinks gluten free diets are too restrictive, she should try having to live your whole life within two minutes of a toilet and see how restrictive that is :o

Seriously, if eating gluten free relieves your symptoms, why on earth would you continue eating it? To make other people feel better? Because you don't have the willpower to do it? Because of peer pressure? Some people would answer yes to these, but certainly not I. The risk of a false negative is too great and lines you up for some potentially nasty complications. And, those who are merely gluten sensitive are also subject to these nasty complications. To take that risk because of an inadequate test would not be my approach.

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Hi, My blood test was negative, but I went gluten free anyway. I have a little sister that was diagnosed at a year old. I had been eating gluten light for a couple of years. I had so many symptoms disappear that I had complained about for years, that I wouldn't go back now. Good LUc,

Wendy

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I find that pretty odd, too. There's definitely the possibility of a false negative, and gluten intolerance without celiac. I think she's probably just trying to say it is a challenging diet for anyone, let alone someone who hasn't had a formal diagnosis. That being said, if you have to live that way, it would be a lot easier for him to try the diet as well. I say, forget what she said and he should give it a try :) My husband does it without a diagnosis, just because I do the shopping :)

I am with you on that for sure. Its like if you know lets say chili does not sit well with you then.... dont eat it and I think that would be the same for gluten. My husband (unfortunately) refuses the gluten-free diet because he tested negative. I personally think he is just in denial but I cant force him to eat what I am forced to. All I know is I have finally started feeling better being 100% gluten-free!!

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You should be on the diet for sure but your husband should only be on it if he feels better. There is no reason not to do the diet. . .it can be a choice for people who aren't allergic and who do not have Celiac Disease. I bet he'd feel better- most people do! Good luck!

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Hi, My blood test was negative, but I went gluten free anyway. I have a little sister that was diagnosed at a year old. I had been eating gluten light for a couple of years. I had so many symptoms disappear that I had complained about for years, that I wouldn't go back now. Good LUc,

Wendy

Yes my thoughts exactly. I complained when I found out what I was diagnosed with but once I started feeling better (very recently) I wouldnt go back now. A one year old with celiac disease? Oh my. That must be tough. Poor little thing. Best of luck to your lil sister :)

Harley

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If she thinks gluten free diets are too restrictive, she should try having to live your whole life within two minutes of a toilet and see how restrictive that is :o

Seriously, if eating gluten free relieves your symptoms, why on earth would you continue eating it? To make other people feel better? Because you don't have the willpower to do it? Because of peer pressure? Some people would answer yes to these, but certainly not I. The risk of a false negative is too great and lines you up for some potentially nasty complications. And, those who are merely gluten sensitive are also subject to these nasty complications. To take that risk because of an inadequate test would not be my approach.

Those are my thoughts as well. Will a blood test be negative if you have a sensitivty to gluten but not actually celiac disease? Did I mention that the Dietician does not have Celiacs? No disrespect but she doesnt know how bad it can get and if giving up gluten can fix the problems, I have to disagree with her. Thanks so much. I just wanted some opinions! :)

Harley

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Have him try the diet with you for a week and see if he feels any improvement-for some people that is too short a time but, it might not be for him. The way I see it is, your cooking gluten-free for you anyway so, why make two dinners, etc?

I tested neg. and went gluten-free and improved dramatically.

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Have him try the diet with you for a week and see if he feels any improvement-for some people that is too short a time but, it might not be for him. The way I see it is, your cooking gluten-free for you anyway so, why make two dinners, etc?

I tested neg. and went gluten-free and improved dramatically.

My thoughts exactly! Thanks :)

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If he feels better on it, no one has ever gotten sick from going gluten-free- the reverse is not true.

It would make it easier on you too- less cross-contamination!

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As long as I'm the primary shopper and cook, everyone who eats here will eat gluten-free. My husband had a negative blood work but is gluten-free. He's seen a drop in migraines that makes it worth it. He's eaten gluten out at work and it always triggers a migraine.

A gluten-free diet can be healthy or not. There's plenty of gluten-free junk food.

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Hello Everyone

I was diagnosed with celiac disease with a positive blood test and Endoscopy and went to a Dietician for some advice. What she said struck me as odd and I wanted some of your opinions. I was asking about my husband having similiar GI issues but he had tested negative (blood test only) She said that people who have not had positive diagnosis should NOT do a gluten free diet!!!

I did not ask "But what about false positives?" I figure if being gluten free makes you feel better than why not? I am just wondering why she would have said that. When I did ask her why she said because gluten-free diets are too restrictive and you should only do it if you have that DX for certain..... What do you all think???

Harley <_<

I think it's ignorant for her to assume. What makes me tick is when they throw out info and advice on something they know little about.

There aren't many doc's who will allow a patient to do their own diagnosing and "fixing of the problem" except diabetes (and the like) because the doc can't watch over a person's shoulder. However with anything a doc diagnoses, there is usually a medication involved. Then follow-ups...then checkups...then more meds...more follow-ups. etc, etc. If more docs would be more knowledgeable on this issue, we wouldn't be here on celiac.com asking questions and getting support.

With celiac or a gluten/wheat intolerance, you change your diet and voila! You don't see a regular doc for diet needs, so then there's that too...so if she/he says "Yes you might have a gluten/wheat intolerance" they're literally saying goodbye to seeing you again, lol. Sorry but I feel it's all about the almighty dollar.

*disclaimer* I am not in no way saying EVERY doctor is like this. With my experience and reading about others, it appears this is true to the majority.

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I think it's ignorant for her to assume. What makes me tick is when they throw out info and advice on something they know little about.

There aren't many doc's who will allow a patient to do their own diagnosing and "fixing of the problem" except diabetes (and the like) because the doc can't watch over a person's shoulder. However with anything a doc diagnoses, there is usually a medication involved. Then follow-ups...then checkups...then more meds...more follow-ups. etc, etc. If more docs would be more knowledgeable on this issue, we wouldn't be here on celiac.com asking questions and getting support.

With celiac or a gluten/wheat intolerance, you change your diet and voila! You don't see a regular doc for diet needs, so then there's that too...so if she/he says "Yes you might have a gluten/wheat intolerance" they're literally saying goodbye to seeing you again, lol. Sorry but I feel it's all about the almighty dollar.

*disclaimer* I am not in no way saying EVERY doctor is like this. With my experience and reading about others, it appears this is true to the majority.

I agree that she must not have been very knowledgable on Celiacs because what I have read on here over and over and read in other places is: If gluten-free makes you feel better than do it. Its not like taking meds for a condition you dont have but simply taking a specific thing out of your diet that you know bothers you.

You made alot of sense with the doctors not wanting to "let you try and cure yourself" because this may have you feeling better and NOT needing their services. And yes unfortunately it is about the almighty dollar with some doctors...... :( Thanks

Harley

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Doctors (and, it seems, some nutritionists) have this strange fear of putting people on a "restricted" diet. "Oh, it's too hard, don't even try." If I didn't tell myself that to get through quantum mechanics (or pick your difficult subject in school), why the heck would I say that for a diet? "Oh, but you have to change so much!" Like change is some super scare awful thing that shouldn't ever be attempted. Maybe it's scary, but that doesn't mean you should never do it. "Oh, you have to eliminate so many healthy foods!" Well, *fortified* foods, that allow you to rely on added things, like folic acid, rather than get them naturally, from things like leafy greens. Not to mention you don't actually lose much in the way of *healthy* food. And, not to even mention the idea of replacing it with food at least as healthy - but hey, if your dietitian only recommends rice and corn as replacements for wheat, they may not know enough about a healthy variety of foods.

(I know of some nutritionists who *are* good, and wouldn't do this. But I've read a lot of people on here with nutritionists like this. Annoying as all get out that someone claims they went to school and can charge for that sort of crappy service.)

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