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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 Test Came Back
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31 posts in this topic

My test came back negative , I was shocked to find this out!! I really cannot believe it! So I have decided to just go Gluten Free!! I know I have gone Gluten free for 3 days and OMG the difference was amazing!! I know it seems odd that 3 days would make me feel so wonderful but it did!! So I decided that if my test came back negative I'd go gluten free, I don't need the Dr. To tell me to go gluten-free , I need me to take care of myself! Thats all!! Just take care of myself!! It just makes sense to me!! I used to do the Atkins diet, was told it wasn't good for me!! I quit a few years ago , and lo and behold I started having problems. Now mind you I don't have some of the problems alot of you have but I have problems! And the more I thought about it! The more it dawned on me! I was eating meat and fresh fruits and veggies and Atkins! Bingo!! SO back I go eating the way I did before!! I'd like to thank this forum for helping me!! I know I am new and have to have every thing I say approved my a mod. But just reading everything you all have to say is a great help!! It sure made me think!! And now I have an answer!! TY so very much!! 

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Best of luck with your diet improvements and keep us informed about your health progress.

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I hope the symptoms of your NCGI continue to improve as time goes by.  :)  You have a great attitude about starting the gluten-free diet - I'm sure that will help you immensely.  Check the boards for recipes and more tips on recovery if you need them.

 

Good luck!  :)

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Yep, welcome to the club! You have a great attitude, and I hope you stay involved with these boards, they are SO helpful.

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Congrats!  Figuring out the issue yourself is just as valid as a doctor doing it IMHO.  Most celiacs are undiagnosed or mis-diagnosed with a different condition.  The medical establishment doesn't have a great track record with diagnosiing celiac disease.  Kind of a lousy one in fact.

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Thank you so very much!! I am glad you all "Think" I have a good attitude , this is like day 2 of my changing habits!! We will see how my attitude is in a couple of weeks  :wacko: LOL! Really was hard today !! I went to a friends house and they keep offering me food!! Want some toast? Want some muffins? Want some chips? No no and no thanks! I just told them any carbs I eat have to be from Natural sources ... Like potatoes and rice, They are elderly and I was not going to go into Celiac with them. SO I stayed there quite a while and didn't eat 1 piece of Gluten!! :) not one drop!! I didn't even have a cup of tea!! 

 

Now to get a pic up :) 

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By the way I am the one on the right of my profile pic. That is the pic my daughter and I took on Mothers day :) She is also going to be tested for Celiac.

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I think you are making a smart move.  My test today said no celiac sprue identified, that I am a NCGI ( actually I think the word used was Sensitivity but I think they are the same)  Explained to me that, if I continued to eat Gluten products I could end up being Celiac.  I have not been eating Gluten products for the past year, only occasional incidents.  Well.  I do not need a diagnosis.  I just will never the touch the stuff again, not intentionally anyhow.  Same plan for my kids,

 

So, good for you.

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Thank you so very much!! I am glad you all "Think" I have a good attitude , this is like day 2 of my changing habits!! We will see how my attitude is in a couple of weeks  :wacko: LOL! Really was hard today !! I went to a friends house and they keep offering me food!! Want some toast? Want some muffins? Want some chips? No no and no thanks! I just told them any carbs I eat have to be from Natural sources ... Like potatoes and rice, They are elderly and I was not going to go into Celiac with them. SO I stayed there quite a while and didn't eat 1 piece of Gluten!! :) not one drop!! I didn't even have a cup of tea!! 

 

Now to get a pic up :)

Good for you!  :) I usually try to bring some munchies when I visit, and let people fuss over my drinks (some of us just like to fuss) and then a visit goes smoothly.

 

Don't be surprised if you start feeling a bit worse for a week or so, many of us go through a withdrawal that makes us tired, grumpy and headachey.  Hopefully it won't hit you but if it does, know that it doesn't last.

 

p.s. You and your daughter look so much alike. Pretty girl.  I'm glad she is getting checked too.

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TY everyone!! My daughters test came back negative also!! Thats ok she has the same attitude as I do !! She will be fine! Thank you for the nice complements!! Sorry I didn't get back here sooner! I am still figuring this place out :) ... (Lost the thread) hahaha anyway!! I have felt great!! I cannot believe the energy I have had! Taking walks lost weight! My goodness!! I was in a 14 now an 8! The bloating is gone!! I cannot believe it! If I'd of known way back then!! OMG! I didn't know it would just disappear !! 

This board is just wonderful!! I appreciate everyones post!! Thank you so very much!! Now I seen a gluten free pizza posted on FB I have got to go check it out!! :) Have a great weekend everyone!! 

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! Taking walks lost weight! My goodness!! I was in a 14 now an 8! The bloating is gone!!

 

 

In 7 days?  That's a lot of bloating!

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In 7 days?  That's a lot of bloating!

Absolutely !! It is!! it was all in my gut!! I knew something was wrong!! My pants would sag on my bottom but be tight on my gut!! I took myself off and 1 week!! Wow!! Now I don't know what I ate yesterday! But something had me a lil bloated!! I was even a lil bloated today from what ever it was!! I think I made hubbs some noodles and out of habit I tasted them to see if they were done. That is the ONLY thing I can think of!! Some times old habits are hard to break!! When I realized I did that I was like OMG what did I do? Then realized how many times I did it .... I have to break those tasting to see if something is done habit!! And stirring with the same spoon habit!! 

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And amazingly enuf!! My gut does not hurt as much!! OMG I was walking around in pain all the time!!! I told the Dr. my gut hurts all the time!! He basically blew me off... Now right now it hurts a bit. but nothing like it did! I mean really it is nothing to complain about now!

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  It's exciting, isn't it? I remember that first week on my elimination diet...ah. I told the doctor it felt like my stomach and abdomen had simply disappeared. I swear I had to look down to see if I still had an abdomen because I felt like a floating head. :-) Great feeling. Congrats to you! Stay with it.

  I was lucky and my test came back positive, but my dad refused to go to the doctor to get tested and just went gluten-free. I kind of wish I had more testing done. All they did was a blood test. :-( I know there is genetic testing and the endoscopy, which I never actually had. I'm so excited to go to the Celiac Center at Columbia University at the end of the month. I have learned that it is very important to find a doctor who is an expert on Gluten Intolerance and Celiac disease. Were you lucky enough to find a doctor like that?

   I also recommend reading Gluten-Free Girl by Shauna James Ahern. She has a great attitude and some suggestions on how to cope. Love that book.

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My test came back negative , I was shocked to find this out!! I really cannot believe it! So I have decided to just go Gluten Free!! I know I have gone Gluten free for 3 days and OMG the difference was amazing!! I know it seems odd that 3 days would make me feel so wonderful but it did!! So I decided that if my test came back negative I'd go gluten free, I don't need the Dr. To tell me to go gluten-free , I need me to take care of myself! Thats all!! Just take care of myself!! It just makes sense to me!! I used to do the Atkins diet, was told it wasn't good for me!! I quit a few years ago , and lo and behold I started having problems. Now mind you I don't have some of the problems alot of you have but I have problems! And the more I thought about it! The more it dawned on me! I was eating meat and fresh fruits and veggies and Atkins! Bingo!! SO back I go eating the way I did before!! I'd like to thank this forum for helping me!! I know I am new and have to have every thing I say approved my a mod. But just reading everything you all have to say is a great help!! It sure made me think!! And now I have an answer!! TY so very much!! 

My tests were all negative too! And I could see a huge difference in myself within days as well :) Good luck on the diet!! :)

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Absolutely !! It is!! it was all in my gut!! I knew something was wrong!! My pants would sag on my bottom but be tight on my gut!! I took myself off and 1 week!! Wow!! Now I don't know what I ate yesterday! But something had me a lil bloated!! I was even a lil bloated today from what ever it was!! I think I made hubbs some noodles and out of habit I tasted them to see if they were done. That is the ONLY thing I can think of!! Some times old habits are hard to break!! When I realized I did that I was like OMG what did I do? Then realized how many times I did it .... I have to break those tasting to see if something is done habit!! And stirring with the same spoon habit!! 

I kept doing that in the beginning, that is just one reason everyone is now eating this way, that and at least 2 of our kids have little things that add up to gluten and go away without it.  The other 3 have had improvements without it.

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TY! I am doing pretty good! Of course I was on Atkins for years!! I should of just stayed on it! I like to eat meat with fresh veggis and stuff!! It is hubbs that like the noodles every night!! I will have to find a gluten free good noodle so he can eat it and not really know the difference! 

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My daughter is a celiac, I tested negative - twice.  I quit gluten anyway - mostly to support her at first, but I feel so much better.  Last week I had a plate of gluten pasta that someone offered me - looked good, I was hungry - poor choice because it made me quite ill for a few days.  So I'm just going with it!

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Yea thats why I wish I would of been tested positive! So I wouldn't think in my head " I am not Celiac, I can eat some" And go for it!! The good thing Is I have never been a big bread Fan or a big Noodle fan! So I will not be tempted by that! Now come  the holidays! I have noooo idea what I am going to do!! We go to hubbs brothers house!! I always blamed it on his water , because I run to the bathroom every time we eat over there!! Now I know it isn't the water! I will have to take my Gluten free dishes over there and just eat those! No more of his BIL's cheesie potatoes with Cream of soups!! And stuff! Wow! I think back on these last few weeks and think , I cannot believe I was eating all that Gluten! I am sure I may be getting some ( I don't know where from) but I am sure I am getting some but I sure feel better!!

 

It is nice you quit Gluten to support your daughter!! I'd of done the same thing! And then having it in your face and eating some then feeling bad!! So very sorry!! Hope you feel better soon!! 

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Yea thats why I wish I would of been tested positive! So I wouldn't think in my head " I am not Celiac, I can eat some" And go for it!! The good thing Is I have never been a big bread Fan or a big Noodle fan! So I will not be tempted by that! Now come  the holidays! I have noooo idea what I am going to do!! We go to hubbs brothers house!! I always blamed it on his water , because I run to the bathroom every time we eat over there!! Now I know it isn't the water! I will have to take my Gluten free dishes over there and just eat those! No more of his BIL's cheesie potatoes with Cream of soups!! And stuff! Wow! I think back on these last few weeks and think , I cannot believe I was eating all that Gluten! I am sure I may be getting some ( I don't know where from) but I am sure I am getting some but I sure feel better!!

 

It is nice you quit Gluten to support your daughter!! I'd of done the same thing! And then having it in your face and eating some then feeling bad!! So very sorry!! Hope you feel better soon!! 

 

You make the potatoes this year.  (you and I seem to be on a  soup thing today!)  ;)

 

http://www.pacificfoods.com/food/soups/condensed-soups.aspx?special_diets=1235

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There's still a few things I'm trying to work out in my head, are gluten sensitivities also hereditary? Or is there a flaw in the test? A couple of my family members want to get tested ( we all suffer from different autoimmune diseases) do you have to get all the tests done because one will show and another may not? Has anyone tested negative and then later tested positive?

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There's still a few things I'm trying to work out in my head, are gluten sensitivities also hereditary? Or is there a flaw in the test? A couple of my family members want to get tested ( we all suffer from different autoimmune diseases) do you have to get all the tests done because one will show and another may not? Has anyone tested negative and then later tested positive?

 

 

Since there are no reliable tests for gluten intolerance other than eliminating it and seeing what happens, I am answering about Celiac disease.

 

 It is hereditary but not everyone with the genes for it develops it. You could test negative today but become positive at a later date.

 

 

Editted because it didn't really make sense.  :blink: Got to stop letting the cat help with answers.

Edited by kareng
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Editted because it didn't really make sense. Got to stop letting the cat help with answers.

Cute :) I have to edit mine a lot too, I keep telling myself to proof read but....

Thanks, I guess it's just hard figure out why some people have the same symptoms and GFD helps but their tests were negative.

Only reason I'm so inquisitive is because I'm trying to explain all of this to my fam and I don't even totally understand it. I knew the gene sometime isn't "activated" (for lack of a better word) until later or maybe from stress or trama. I did know enough to tell them to ask for a full Celiac panel when they go for the blood test. (Hope that was right) *crosses fingers*

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I had a pretty long talk with a friend of mine today, she told me she thought I was doing great on my diet because I get it in my head I cannot eat some stuff so I just don't eat it! I said because 1st of all I hate spending most of my time thru out the day running to the rest room, and second of all , I went on this diet for 3 days and felt so much better!! And actually I have never really been much of a bread eater, and the noodles I could live w/o .. everything eles I can eat!! Just make sure it is Gluten free!! So we were at the store and I was looking for Basmitti rice, She said "ohh ohh look here it is and it is gluten free" It was a special kind. Because the other Basmatti rice was not gluten free , So she is behind me on my diet! I also told her , this is NOT a diet! It is a way of life!! I will try <-- key word ..to never eat a glutenized noodle or piece of bread or dish of anything again!! If I do it will be a total accident!! 

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OK talked to the Dr's office , after they sent me a letter wanting me to call them, My test for Celiac came back positive. I said but you called and said it was negative!! She said I have your test right in front of me and it is positive. So I have a Dr. apt. with some other Dr. In Aug! SO back on Gluten I go! 

My friend said well you wanted to be sick from something. I said No I wanted answers!! And this "If I am going to be sick from anything" I'd much rather be Celiac than any thing eles!! I can control Celiac!! So end result " Test for Celiac" POSITIVE .... Thank you!! Now I know!! 

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