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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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

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MissA    0

Hi,

I had a GI Panel done which included stool and saliva due to feeling constantly bloated. I have also suffered from acne for the past 3 years and I've never had acne problems in the past. The results were maldigestion, malfermentation dysbiosis, and leaky gut. My ND also said that I have food sensitivities but at this point I don't know exactly what to because I can't afford to have the testing done at the moment. She also said that if I don't get these problems under control, it could lead to auto-immune disorders down the road. My test results for allergies to wheat, rye, oat, barley, and other grain glutens were negative. This was determined through a saliva test. I find that hard to believe because since this diagnosis, I have been really trying to listen to what my body is telling me and wheat definitely seems to be one of the offenders. Upon eating anything with wheat, flour, etc., my abdomen becomes distended. From abstaining from wheat, anything w/flour, breads, etc., my abdomen has not been bloated, amazingly so. This is a miracle in itself for me. I was constantly walking around in a state of bloat which I thought was normal for a long time. How much does one really rely on the saliva test? Wouldn't I have had to eat something with gluten for it to test positive?

Thanks,

Missy

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Skylark    935

Hi, and welcome. Gluten intolerance/celiac is not allergy. They are very distinct immune reactions. It doesn't sound like you have had a proper blood celiac panel?

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MissA    0

Hi, and welcome. Gluten intolerance/celiac is not allergy. They are very distinct immune reactions. It doesn't sound like you have had a proper blood celiac panel?

Hi,

Thanks for the reply. I did not have a blood celiac panel done. It was a GI panel that only included testing the stool and saliva. My ND was just trying to get a starting point from the symptoms I was having. The one test done was through saliva, as I mentioned. That's what I am unsure about..is it truly a test for gluten intolerance? It sounds like it is not.

I thought you could have an allergy to wheat. So you are saying it is not an allergy, but intolerance due to immune reactions? That is another issue that is confusing to me. I have maldigestion and leaky gut which means some of my food goes out in chunks so to speak into my blood stream. Then the body thinks it's a foreign invader and attacks it. Is that what is causing my intolerance or as I thought..allergies to certain foods? Why do some foods leak out & others don't? It doesn't make sense to me. When the leaky gut is healed will I be able to eat foods that caused me problems in the past or like you said am I now intolerant and can never eat them again? Thanks for your patience. I am new all of this. You may not even be able to answer the last part of my question. Sorry, if this doesn't pertain to this forum. I'm just trying to figure it all out.

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Skylark    935

Allergy to wheat, celiac disease, and gluten intolerance are three different conditions involving different parts of your immune system. Celiac is an autoimmune disease and it's important to know whether you have it if you seem to be reacting to gluten. There are allergy tests, celiac tests, and to check for gluten intolerance you eliminate it from your diet after your celiac testing is done. There is no true test for gluten intolerance, and salivary tests are iffy for celiac.

Gluten intolerance and celiac are innate properties of your body that don't go away. If you have one or the other, you will never be able to eat gluten. The inflammatory reaction to gluten can worsen a leaky gut, which can lead to other allergies or food intolerances that might improve on a gluten-free diet. All sorts of tiny bits of food go through a leaky gut; some foods are just more troublesome than others. It's different from person to person what might bother you.

You need to keep eating gluten, four slices of bread a day worth, and go to a normal doctor and ask for a celiac panel. The test will not work off gluten. It should be covered under your insurance. If you're not insured, you can order a home celiac test kit for $50 thought it's not as good as a proper test. http://www.glutenpro.com/ You can also get a proper celiac panel from this service though it costs somewhat more.

http://www.ineedlabs.com/Celiac-Disease-Comprehensive-Antibody-Profile.html?keyword=celiac

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Adalaide    361

Everything Skylark said should be very helpful. I would just like to add though that while a positive blood test is useful information, a negative blood test is useless. I was diagnosed by biopsy but two separate blood tests came back negative. There is absolutely no doubt at all that I have celiac. After blood tests you may want to discuss with your doctor whether you should have a biopsy or just go gluten free. I suppose different doctors will have different opinions on this so try to get as much information as you can before you go and have an idea of what you would prefer. Don't be afraid to stick up for yourself! In the end, you know what is best for you. Your doctor isn't the one living life locked in a bathroom.

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MissA    0

Allergy to wheat, celiac disease, and gluten intolerance are three different conditions involving different parts of your immune system. Celiac is an autoimmune disease and it's important to know whether you have it if you seem to be reacting to gluten. There are allergy tests, celiac tests, and to check for gluten intolerance you eliminate it from your diet after your celiac testing is done. There is no true test for gluten intolerance, and salivary tests are iffy for celiac.

Gluten intolerance and celiac are innate properties of your body that don't go away. If you have one or the other, you will never be able to eat gluten. The inflammatory reaction to gluten can worsen a leaky gut, which can lead to other allergies or food intolerances that might improve on a gluten-free diet. All sorts of tiny bits of food go through a leaky gut; some foods are just more troublesome than others. It's different from person to person what might bother you.

You need to keep eating gluten, four slices of bread a day worth, and go to a normal doctor and ask for a celiac panel. The test will not work off gluten. It should be covered under your insurance. If you're not insured, you can order a home celiac test kit for $50 thought it's not as good as a proper test. http://www.glutenpro.com/ You can also get a proper celiac panel from this service though it costs somewhat more.

http://www.ineedlabs.com/Celiac-Disease-Comprehensive-Antibody-Profile.html?keyword=celiac

Thanks for your replies.

I just went to see my ND and I am going forth with the allergy tests. She said that she doubts very much I have celiac disease or my Gliadin Ab, SIgA (Saliva) test would have been positive, which it was not. This is the test I was asking about in my original post. She also said that she does not think I will ever have celiac disease but thinks it is just a sensitivity issue due to the leaky gut. All I can say is that I hope she is right. I asked her if I needed to eat some of the foods which I will be tested for and her reply was no. As long as I have eaten wheat, gluten, grains, etc. in the last 6 months the test will pick it up. Skylark, you had mentioned that I need to keep eating bread, at least 4 slices. Is that per day or on the day of the test? I have been pretty much cutting it out of my diet for the last 2 weeks but have eaten some. Are you saying that in order for the test to pick up an intolerance, allergy, or celiac disease, I need to have eaten bread in the same day of the test? I am thinking I will go tomorrow for my blood work so I want to be prepared. After reading that many people get false negatives, it's a little scary.

Thanks,

Missy

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Skylark    935

You still need proper celiac testing. Lack of salivary gliadin IgA means nothing. It is not a validated test for celiac disease.

You need to be eating 4 slices of bread worth a day consistently for celiac testing. You can't be cutting gluten out of your diet for the tests to work. After two weeks you'd need to go back to gluten for a couple weeks before the test. There is no such thing as a test for gluten intolerance, other than an elimination diet. IgE allergy testing will not be affected by eating gluten.

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MissA    0

You still need proper celiac testing. Lack of salivary gliadin IgA means nothing. It is not a validated test for celiac disease.

You need to be eating 4 slices of bread worth a day consistently for celiac testing. You can't be cutting gluten out of your diet for the tests to work. After two weeks you'd need to go back to gluten for a couple weeks before the test. There is no such thing as a test for gluten intolerance, other than an elimination diet. IgE allergy testing will not be affected by eating gluten.

I apologize that I keep asking questions but I am getting confused. I am getting a food sensitivity/intolerance test of 200 foods through (Company Name Removed - They Spammed This Forum and are Banned) WORLDWIDE. Are you saying this test is not going to tell me if I have celiac disease? That to find out if I have celiac disease, I need to have a specific test done? So the test I am getting done will not be affected by eating gluten or not eating gluten? Is that what you mean? Forgive me if I am using the incorrect terms or sayings. I honestly don't have any idea what exactly I'm dealing with here. My ND explained to me that if I have an allergy..it's an epi pen situation, if I have a sensitivity...chances are my immune system will reset itself and I will be able to eat whatever it is I'm sensitive to again, and if it's celiac disease...that's an auto-immune disorder. I don't know what to think. Why would my ND say that statement about my giladin IGA and you say it means nothing? Does that mean she doesn't know what she is talking about? I paid $499 to have this food sensitivity/intolerance testing done because I thought it was the right thing to do. I figured I can't heal my gut if I keep eating things that are inflamming to my body so I guess I made the right decision. I'm not so sure at this point.

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Skylark    935

A celiac panel is a series of blood tests consisting of anti-endomysial IgA, anti-TTG IgA, and gliadin peptide IgG and IgA, plus total IgA to make sure the tests are valid. If you are not getting those blood tests done, you are not getting tested for celiac. There is no other way to diagnose celiac that has been scientifically demonstrated to be reliable or accurate. The blood tests do have a 20% or so false negative rate so a good doctor who suspects celiac will also order an endoscopy with biopsies. Gliadin tests are considered outdated in celiac testing because they are prone to both false positives and negatives, which is why I wouldn't trust the saliva. Not to mention the utter lack of validation of salivary gliadin testing for celiac disease in the first place.

You need to keep eating gluten, go to a plain old MD, and ask for a celiac panel. Your insurance should cover at least the TTG-IgA, which is considered a screening test but it's better if you can get the whole panel because of the common false negatives.

The $499 IgG intolerance panels may help you guide an elimination diet, unless you got IgG4 and then it's just a ripoff. They are very prone to false positives but some people find them helpful if they can't get good results with elimination diets. You don't need to be eating the food to get the test, though people don't tend to react to foods they don't eat regularly. The usual follow-up is to eliminate all the IgG foods and challenge them one at a time if you feel better.

Epi-pen style allergies are IgE mediated and again blood/skin prick testing is potentially helpful but also unreliable. Again it is common to have a false positive blood or skin prick allergy test to a food you tolerate perfectly well.

Gluten intolerance is NOT an immune system reset situation for most folks. It's sort of its own disease and it seems immunologically different from more typical intolerances, and for most folks it's permanent. There are no tests for it other than ruling out celiac by blood and biopsy and trying the diet.

You have to be very, very careful with naturopaths. There are all levels of training, accreditation, and licensing. Good naturopaths are as scarce as good regular doctors.

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MissA    0

A celiac panel is a series of blood tests consisting of anti-endomysial IgA, anti-TTG IgA, and gliadin peptide IgG and IgA, plus total IgA to make sure the tests are valid. If you are not getting those blood tests done, you are not getting tested for celiac. There is no other way to diagnose celiac that has been scientifically demonstrated to be reliable or accurate. The blood tests do have a 20% or so false negative rate so a good doctor who suspects celiac will also order an endoscopy with biopsies. Gliadin tests are considered outdated in celiac testing because they are prone to both false positives and negatives, which is why I wouldn't trust the saliva. Not to mention the utter lack of validation of salivary gliadin testing for celiac disease in the first place.

You need to keep eating gluten, go to a plain old MD, and ask for a celiac panel. Your insurance should cover at least the TTG-IgA, which is considered a screening test but it's better if you can get the whole panel because of the common false negatives.

The $499 IgG intolerance panels may help you guide an elimination diet, unless you got IgG4 and then it's just a ripoff. They are very prone to false positives but some people find them helpful if they can't get good results with elimination diets. You don't need to be eating the food to get the test, though people don't tend to react to foods they don't eat regularly. The usual follow-up is to eliminate all the IgG foods and challenge them one at a time if you feel better.

Epi-pen style allergies are IgE mediated and again blood/skin prick testing is potentially helpful but also unreliable. Again it is common to have a false positive blood or skin prick allergy test to a food you tolerate perfectly well.

Gluten intolerance is NOT an immune system reset situation for most folks. It's sort of its own disease and it seems immunologically different from more typical intolerances, and for most folks it's permanent. There are no tests for it other than ruling out celiac by blood and biopsy and trying the diet.

You have to be very, very careful with naturopaths. There are all levels of training, accreditation, and licensing. Good naturopaths are as scarce as good regular doctors.

[/quot

Thanks for all your help. I really do appreciate the time you've taken to answer all my questions.

I don't understand what you mean when you say...The $499 IgG intolerance panels may help you guide an elimination diet, unless you got IgG4 and then it's just a ripoff. What is an IgG4?

Now I'm starting to think the stool tests that came back as large and small intestine inflammation is being caused by possible celiac disease and maybe isn't leaky gut at all. Or maybe the leaky gut is being caused by possible celiac disease as well as my low digestive enzyme strength. My mind is going in a lot of different directions.

There has to be something to this because since I've cut out gluten my face started to clear up. Since adding it back in this week, I'm breaking out again. Plus, when I took gluten out after about 1 1/2 wks. my abdomen felt dramatically different. Something I haven't felt in years. I wasn't bloated. When I added it back in this week, I over did it for the first time. I felt so bad that evening...worse than I ever felt. It brought me to tears because I was uncomfortable. I had two other things that aggravated the situation...2 squares of dark chocolate and a coke. It was just a build up kind of day from lunch on. I was also so moody and irritable. Oh, I so don't want to have to eat 4 slices of bread for the next 2 weeks so I can get a celiac test done but it's what needs to be done. Thanks again for your help!

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Skylark    935

Good luck! You are welcome for the help. I pay the board back for recipes and tips on gluten-free goodies by helping out with testing. I'm a scientist. :)

I do hope you aren't celiac and just gluten intolerant but you need to know for sure. And I'm really sorry you are miserable on the gluten. :( Did you find a way to get celiac panel blood test?

Celiac can cause pancreatic insufficiency, which would lower your digestive enzyme strength. It certainly causes large and small intestinal inflammation, but so does gluten intolerance.

IgG and IgG4 are different types of antibodies. IgG4 testing for intolerances was a bit of a fad and is still available through some services. Turns out IgG4 might actually make you tolerant to certain things. IgG intolerances can be real; it's just that the testing tends to give false positives.

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MissA    0

Ah, so that is why you know so much :)

I'm assuming I can call my MD and they will get something scheduled. At least that is what I am hoping. I have to get myself ready though by eating some form of gluten every day for the next 2 weeks. Don't get me wrong, I like bread in any form so I will enjoy it going down. It may not be so bad if I space it out.

I at least know that by eliminating it, I feel better overall and my skin becomes clearer. So we shall see....we shall see. I'm still going to go for the allergy testing because, heck I paid for it. I will keep you posted on my results all around. I'm really interested in finding out if this is the cause of my issues.

Once again, your input is much appreciated.

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mushroom    1,205

The three to four slices of bread or equivalent is the amount to eat every day for the next two weeks. You must have enough gluten in your system to produce the antibodies that the tests measure. If you skimp on the gluten you will be wasting your time. I know it is not pleasant, but if the testing is important it is important to do it right. :)

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MissA    0

Skylark,

Hello!

I want to tell you my test results like I said I would. I did not have a blood test done to test for celiac disease. Putting gluten back into my diet just wasn't worth the pain. What I did do is have the (Company Name Removed - They Spammed This Forum and are Banned) blood test done for food intolerance/sensitivity. It turns out wheat is in the moderate category which I've been told to cut out for 6 months. I have a mild reaction to gluten/giladin and was told that I can eat products with gluten in them just not wheat. But only once or twice a week. That essentially says to me to keep eating gluten free to make things much simpler. So, I'm anxious to hear what you think about the results and the suggested protocol. I am feeling a sense of relief knowing that wheat is causing the problem as I suspected.

Thanks,

Missy

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Skylark    935

I understand not wanting to eat gluten! If you're reacting to wheat and gluten/gliadin then I'd seriously consider going gluten-free. Eating gluten once or twice a week is enough to keep you from finding out whether the diet helps. It is an all-or-none thing for most of us. I don't think anyone on the board who was gluten intolerant has regained tolerance.

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MissA    0

I understand not wanting to eat gluten! If you're reacting to wheat and gluten/gliadin then I'd seriously consider going gluten-free. Eating gluten once or twice a week is enough to keep you from finding out whether the diet helps. It is an all-or-none thing for most of us. I don't think anyone on the board who was gluten intolerant has regained tolerance.

I've made my mind up now that I have some kind of concrete answers...gluten free for me. I went over my results again and the paper says NOT to eat glutenous grains because I have a mild reaction to them. They are not even in the rotational diet example given to me. I'm not sure why my ND told me to go ahead and eat them minimally. Probably because it said mild reaction. I really feel that this is the cause of my leaky gut. I may be wrong but that's what it seems to be pointing to, at least in my mind. Anyway, bottom line is that I need to be gluten free..point blank period. End of story...I hope.

I just found out all the other diseases that gluten causes. My Mom has osteoporosis really bad. She is 79. It's to the point where she's had fractures etc. over the last couple of years. I told her to get tested. I'm not sure if she will take my advice or not. Are gluten problems hereditary? I thought I read they are. If so, that feeds my fire even more.

I read your bio today. I too suffer from depression and anxiety. Eating gluten makes my symptoms a lot worse. I ate some last week and the beginning of this week because I was playing games with myself thinking..oh, maybe not. Wrong!! I'm sbig timeg bigtime this week now. Live and learn. Like I said I feel better just knowing "something".

Thanks,

Missy

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