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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 Prediction
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22 posts in this topic

I think that one day they are going to find a missing link for celiac testing. I think there is another antibody or a whole different substance in the body that they haven't discovered yet that will point to celiac.

There are too many of us on this board who were deathly ill and debilitated yet we were either only positive on one or two of the tests in the panel or we were barely over the limit positive. Or negative which is just shameful. If someone is that sick, it's not logical that their antibodies will be that low. Something is missing.

Or there is some sort of inverse relationship that they are missing.

Celiac testing is one of my biggest sources of anger about this disease. I HATE seeing all the hell people go through on here who are clearly sicker than sick and yet their tests come up negative and they don't know what to do. I hate and loathe even more when they have a big reversal of symptoms when they try gluten free but they doubt themselves or feel like the celiac stepchild for not being "real" bonafide celiacs.

I hate the gluten intolerance label with a purple passion. It lowers people's expectations of what the disease can do to you. It makes them feel like it's not as serious even though in their heart they know it is. And I think the majority of intolerant people are celiacs who have been failed by the crap garbage that passes for testing. If you say you are intolerant there is not a waiter or restaurant manager in the world who is going to take you serious and good luck getting most docs to take that seriously too.

The most discouraging thing I have seen in a long time was that article about how bad endoscopies are. Dr. Green or whatever his name is (Is it Green? I forget)insists it's the "gold standard." He's not far from me and he refused to take me as a patient because I refused endo. I got a positive blood test and I wasn't consenting to invasive procedures and eating gluten any longer. I was going to die if I kept eating gluten as far as I could tell.

The stats on endo were abysmal. Most doctors not performing them correctly, reading the results wrong. People's lives are at stake.

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I for one hope you are right :l I know how I feel and it isn't good when I eat that crap!!

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I for one hope you are right :l I know how I feel and it isn't good when I eat that crap!!

I tell everybody if you are undiagnosed or think you are "intolerant" please save your sanity and tell people you have celiac. The last thing you need is to defend your health decision or have people not take you seriously. Tell family and friends you had a blood test.

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The only problem with that one is my mom works at my family Doctor and knows what my tests said =( of course she is only a file clerk but still

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I tell people that I'm waiting for the testing to catch up. I agree that there's something major missing. Articles I'd read about gluten ataxia indicated that plenty of people who improved on a gluten free diet hadn't tested positive for celiac and I think I likely fall into that category. I don't mind being open about testing negative, people know that gluten makes me super ill. I'll say I have celiac disease to strangers, but if I want to make a point about testing failing to diagnose me, I think it's better that I'm honest about not getting a positive result, because maybe I can encourage someone else to go gluten free. But I live in Australia and awareness is much better here, so if I tell someone I can't eat gluten, I've never had anything but supportive responses (oh the occasional 'sucks to be you, I'd die without bread!' but they are supportive of me not eating it).

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There's no way I'm going to eat gluten just for someone to tell me I'm ill, so I'm not going to get an official diagnosis either. Hope no one will ever require it of me for any reason - like a medical note for something.

I'm beginning to wonder whether I should tell people I have coeliac disease instead, but I'm afraid people will think 'DISEASE? Ewwwww keep away!'

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There's no way I'm going to eat gluten just for someone to tell me I'm ill, so I'm not going to get an official diagnosis either. Hope no one will ever require it of me for any reason - like a medical note for something.

I'm beginning to wonder whether I should tell people I have coeliac disease instead, but I'm afraid people will think 'DISEASE? Ewwwww keep away!'

I never say disease either. I just say celiac.

If your family is supportive then you of course don't have to lie about testing, but I've seen so many situations here where people told the truth to family and were treated like dirt. And there have been awful instances of family members glutening people on purpose, lying that something was gluten free to prove to them they don't really have a problem with gluten. One poor woman was glutened on purpose by a family member and then after she ate a whole meal that sad excuse for a human being gloated and said "See you just ate gluten and you're fine." The celiac person broke out in a horrible DH rash all over her body and was very sick from that.

So you have to know your audience.

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The biopsy results are 99.9 % accurate that's what I have been told by several nurses . I don't get how any celiac could have negative biopsy tests unless the doctor don't do the test right . Lately I read cross contamination or a coin sized amount of gluten can will cause damage to the villi for 6 months , so if people have eaten gluten there whole life the tests would see the damage .

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The biopsy results are 99.9 % accurate that's what I have been told by several nurses . I don't get how any celiac could have negative biopsy tests unless the doctor don't do the test right . Lately I read cross contamination or a coin sized amount of gluten can will cause damage to the villi for 6 months , so if people have eaten gluten there whole life the tests would see the damage .

Doctors and nurses will tell you all sorts of things but they are sadly WRONG. I wish I had the link to that article. It was something like only 30% accuracy on the biopsy precisely because they don't do it right, and because the test is inherently easy to screw up. Your small intestine is so many feet long and they take 4 tiny teeny weeny samples. Very easy to miss the mark. They also don't go very deep. One woman on here was part of a study where they used a camera after negative biopsy and then they found her villi damage much lower than the biopsy goes.

Then there are those docs who just don't read it right. Any villi blunting or damage means celiac and some of them look for all out war in there before they will give a positive DX.

The anecdotal evidence is a nuclear bomb to the 99% accurate b.s. There are loads of people with positive blood tests and negative biopsies. Then they come here crying and losing their minds because they were told they don't have celiac yet they are so sick or they improved on gluten free.

The celiac biopsy is a medical travesty in America. It's the "gold standard" becuase it makes the doctors so much GOLD! Why do a simple blood test when you can charge my insurance for a surgery? It's despicable that after positive blood tests they insist on biopsy to "confirm." It's a dietary change! They torture patients by keeping them on gluten and putting them through an invasive procedure for what?

Yeah nurses and doctors "say" a lot of things about celiac but stick around here long enough and you'll find that they are sadly so misinformed.

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Doctors and nurses will tell you all sorts of things but they are sadly WRONG. I wish I had the link to that article. It was something like only 30% accuracy on the biopsy precisely because they don't do it right, and because the test is inherently easy to screw up. Your small intestine is so many feet long and they take 4 tiny teeny weeny samples. Very easy to miss the mark. They also don't go very deep. One woman on here was part of a study where they used a camera after negative biopsy and then they found her villi damage much lower than the biopsy goes.

Then there are those docs who just don't read it right. Any villi blunting or damage means celiac and some of them look for all out war in there before they will give a positive DX.

The anecdotal evidence is a nuclear bomb to the 99% accurate b.s. There are loads of people with positive blood tests and negative biopsies. Then they come here crying and losing their minds because they were told they don't have celiac yet they are so sick or they improved on gluten free.

The celiac biopsy is a medical travesty in America. It's the "gold standard" becuase it makes the doctors so much GOLD! Why do a simple blood test when you can charge my insurance for a surgery? It's despicable that after positive blood tests they insist on biopsy to "confirm." It's a dietary change! They torture patients by keeping them on gluten and putting them through an invasive procedure for what?

Yeah nurses and doctors "say" a lot of things about celiac but stick around here long enough and you'll find that they are sadly so misinformed.

So it's more the tests being done wrong than not being accurate . celiac disease causes inflammation and villi damage I just don't get how doctors could miss it . I'm from england maybe we have better testing over here my old doctor boasted about how he had performed over 5000 endoscopy's :o I also hear patients told to start a gluten-free diet before the endoscopy , I hear stories for example someone has been gluten-free for 2 weeks before the endoscopy and tests come back negative , how can the villi repair in 2 weeks if a small amount of gluten can do 6 months of damage it all seems confusing .

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I tested negative on the blood tests. I'm furtunate though, because I had severe symptoms, along with with weight loss. When I went to the GI she said she was going to do blood tests, a stomach emptying study, and an endoscope, and said if those didn't give us answers there were other tests that could be done.

When my endoscope was done it was easily seen with the naked eye that I had severe damage and was DXed with Celiac.

There are a lot of suffering people out there that are shooed away if given the blood test and it comes back negative. A scope isn't done to double check. They're told they have IBS and sent on their way. :o

If the blood tests have a 20-30% false negative rate, you'd think they'd try real hard to come up with a better test? Even the genetic tests aren't very good. They can tell if you *might* get Celiac, but that's only if you have DQ2 and/or DQ8. They know there are more genes involved, but say it's rare to have them. Maybe it's not so rare? Maybe those without the two main ones are being mis-Dxed too?

I gave extra vials of blood to a research team at Mayo Clinic. They're looking hard at other genes as a way of DXing more people, or finding additional companion diseases to Celiac to watch for. Unfortunately, research seems to move at a snail's pace?

I wondered too, if there's a soy version of Celiac? So many of us can't tolerate soy along with gluten?

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I never say disease either. I just say celiac.

If your family is supportive then you of course don't have to lie about testing, but I've seen so many situations here where people told the truth to family and were treated like dirt. And there have been awful instances of family members glutening people on purpose, lying that something was gluten free to prove to them they don't really have a problem with gluten. One poor woman was glutened on purpose by a family member and then after she ate a whole meal that sad excuse for a human being gloated and said "See you just ate gluten and you're fine." The celiac person broke out in a horrible DH rash all over her body and was very sick from that.

So you have to know your audience.

That's horrendous :o

Thankfully my family's been very supportive over it. I eat at my parents' house every Friday and my mum says she doesn't mind if I want to double check any of the ingredients. I was really relieved because I was so nervous about telling her. I thought she'd think I was making it up. I think she's relieved for me though - she partly knew how ill I'd become (although I don't think she realises quite how bad I'd got).

I was also very touched by the service I received at a pub recently - I go to a folk evening there every Thursday evening and at a certain time the landlord puts a large platter of free food like sandwiches and chips for everyone taking part. I've been going there for a couple of years now and last Thursday I plucked up the courage to ask whether I could have just a small lump of cheese because I was hungry and couldn't eat anything. He assured me that the chips were gluten free, but I was nervous and they'd been put next to the sandwiches. He said not to worry and brought me a big bowl of salad with two types of cheese!

I could have cried - I was so touched :-)

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The only problem with that one is my mom works at my family Doctor and knows what my tests said =( of course she is only a file clerk but still

Hi Sacredblossom,

Are you over 18? If so, no matter what position your mother has at your doctor's office, she should not have access to your files. If something needs to be done with your files, someone else should be doing it unless you have signed a release for your mother to have access to your file. Your mother should not have access to your file, especially if it is causing problems for you. Talk to your doctor about this.

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I think that one day they are going to find a missing link for celiac testing. I think there is another antibody or a whole different substance in the body that they haven't discovered yet that will point to celiac.

There are too many of us on this board who were deathly ill and debilitated yet we were either only positive on one or two of the tests in the panel or we were barely over the limit positive. Or negative which is just shameful. If someone is that sick, it's not logical that their antibodies will be that low. Something is missing.

Or there is some sort of inverse relationship that they are missing.

Celiac testing is one of my biggest sources of anger about this disease. I HATE seeing all the hell people go through on here who are clearly sicker than sick and yet their tests come up negative and they don't know what to do. I hate and loathe even more when they have a big reversal of symptoms when they try gluten free but they doubt themselves or feel like the celiac stepchild for not being "real" bonafide celiacs.

I hate the gluten intolerance label with a purple passion. It lowers people's expectations of what the disease can do to you. It makes them feel like it's not as serious even though in their heart they know it is. And I think the majority of intolerant people are celiacs who have been failed by the crap garbage that passes for testing. If you say you are intolerant there is not a waiter or restaurant manager in the world who is going to take you serious and good luck getting most docs to take that seriously too.

The most discouraging thing I have seen in a long time was that article about how bad endoscopies are. Dr. Green or whatever his name is (Is it Green? I forget)insists it's the "gold standard." He's not far from me and he refused to take me as a patient because I refused endo. I got a positive blood test and I wasn't consenting to invasive procedures and eating gluten any longer. I was going to die if I kept eating gluten as far as I could tell.

The stats on endo were abysmal. Most doctors not performing them correctly, reading the results wrong. People's lives are at stake.

Long time since I have been hanging around here. I miss everyone and all the passion and support that got me through the darkest times in all of this. I agree with so much of what you are saying. I hate to hear the old standby suggestion to "make sure you keep eating gluten (uh.. poison) until after all the testing is done" garbage. I tested negative but the evidence was so overwhelming that the doctor did the scope anyway. Thing is, I was fortunate to have a good gastro who did it right.. or maybe was lucky. The damage can be very spotty and the samples they take from random locations might miss it altogether thus giving the appearance of no atrophy. It didn't matter in the long run whether I got the ok from the doctors or not. There was no way anyone was going to get me to "challenge" by eating anymore poison. I was dying and when the light bulb went on, there was no turning back. I knew and that was all that really mattered. It's nobody elses' business as to what my official DX was (even though I did get a positive DX for celiac.) oOf course, that's a lot easier for me to say now than it was back then. It was brutal at first. All I know is that when I went rigorously gluten free that I went from dying to recovery and from recovery to living and from living to thriving. Granted, I still have a ways to go but just this past fall I was talking to some rheumatoid arthritis researchers about how, after my celiac diagnosis and switch to a very low carb gluten free diet and strategies to restore my gut flora, that my supposedly irreversible joint damage sort of kind of began to reverse. My hands, which used to be claws are almost completely back to normal. My elbows, which I could no longer fully straighten to within about 15 degrees of straight, are now capable of full range of motion. I have no gel time when it used to take two plus hours to get past shuffling. Thing is, according to the initial blood work, I shouldn't have received the scope. Even with all that Fasano is doing and that others have contributed to the field, I don't think we're anywhere close to putting it all together in a way that is truly helpful. I think that the commercialization of the celiac diet has messed things up so severely that many are no better off than pre diagnosis because of it. I live and eat on the lunatic fringe now but do so happily because I have my life back. The perfect storm, the confluence of so many food and environmental and medical (pharmaceutical) changes that have happened over the last fifty years are wreaking havoc with our genetic expression and we are the proverbial canaries in the cage.. but the cage is getting mighty crowded. Anyway... rant over. I have way too much catching up to do here and I hope I see some old friends.

CS

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Long time since I have been hanging around here. I miss everyone and all the passion and support that got me through the darkest times in all of this. I agree with so much of what you are saying. I hate to hear the old standby suggestion to "make sure you keep eating gluten (uh.. poison) until after all the testing is done" garbage. I tested negative but the evidence was so overwhelming that the doctor did the scope anyway. Thing is, I was fortunate to have a good gastro who did it right.. or maybe was lucky. The damage can be very spotty and the samples they take from random locations might miss it altogether thus giving the appearance of no atrophy. It didn't matter in the long run whether I got the ok from the doctors or not. There was no way anyone was going to get me to "challenge" by eating anymore poison. I was dying and when the light bulb went on, there was no turning back. I knew and that was all that really mattered. It's nobody elses' business as to what my official DX was (even though I did get a positive DX for celiac.) oOf course, that's a lot easier for me to say now than it was back then. It was brutal at first. All I know is that when I went rigorously gluten free that I went from dying to recovery and from recovery to living and from living to thriving. Granted, I still have a ways to go but just this past fall I was talking to some rheumatoid arthritis researchers about how, after my celiac diagnosis and switch to a very low carb gluten free diet and strategies to restore my gut flora, that my supposedly irreversible joint damage sort of kind of began to reverse. My hands, which used to be claws are almost completely back to normal. My elbows, which I could no longer fully straighten to within about 15 degrees of straight, are now capable of full range of motion. I have no gel time when it used to take two plus hours to get past shuffling. Thing is, according to the initial blood work, I shouldn't have received the scope. Even with all that Fasano is doing and that others have contributed to the field, I don't think we're anywhere close to putting it all together in a way that is truly helpful. I think that the commercialization of the celiac diet has messed things up so severely that many are no better off than pre diagnosis because of it. I live and eat on the lunatic fringe now but do so happily because I have my life back. The perfect storm, the confluence of so many food and environmental and medical (pharmaceutical) changes that have happened over the last fifty years are wreaking havoc with our genetic expression and we are the proverbial canaries in the cage.. but the cage is getting mighty crowded. Anyway... rant over. I have way too much catching up to do here and I hope I see some old friends.

CS

Thanks for sharing our success story. It gives lots of us hope.

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Hi Sacredblossom,

Are you over 18? If so, no matter what position your mother has at your doctor's office, she should not have access to your files. If something needs to be done with your files, someone else should be doing it unless you have signed a release for your mother to have access to your file. Your mother should not have access to your file, especially if it is causing problems for you. Talk to your doctor about this.

Lol yeah way over 18 B) I'm 34 but my mother has always been, ummm nosey shall we say :blink: It's a very small town where I grew up and I actually did ask her to get my test results for me! Probably not the smartest thing I could've done! She knows what's going on though because they all talk in the office, as with most medical facilities!! :ph34r: We shouldn't but we do talk about our patients amongest each other my mom just happens to work at the Dr I go to... :unsure:

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my blood test was negative - if i hadn't already seen such a marked improvement in my symptoms as i had already started eating gluten free, i would have probably believed that i didn't have celiac and continued to eat gluten and die. after 25 years of suffering/misdiagnosed/medicated, etc., the gluten free diet is the ONLY THING that worked IMMEDIATELY. my nephew and grandson, who have had digestive issues since they were babies, both had negative blood tests - since that is the first test "they" do, since it was negative, the celiac dx was instantly a dead issue as far as their respective doctors were concerned, so they are still sick and clueless. because their doctor said so and that is gospel to most people. i can't blame them... when i had my endoscopy, my doc could SEE the damage done, therefore i got my dx. the biopsies she took came back from the lab: negative. i feel bad for the (and my relatives!) people who aren't convinced or committed enough because of what their doctor tells them. most of them, initially general practice docs (you have to be referred to a GI doc by your general practice doc at least you do for our insurance to cover it!) have no clue even what the symptoms of celiac are. so, most people get shut down/game over before they even have enough evidence to make an educated decision. this diet SAVED my LIFE. yet, sadly, most people will only get a sketchy diagnosis at best. :(

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Long time since I have been hanging around here. I miss everyone and all the passion and support that got me through the darkest times in all of this. I agree with so much of what you are saying. I hate to hear the old standby suggestion to "make sure you keep eating gluten (uh.. poison) until after all the testing is done" garbage. I tested negative but the evidence was so overwhelming that the doctor did the scope anyway. Thing is, I was fortunate to have a good gastro who did it right.. or maybe was lucky. The damage can be very spotty and the samples they take from random locations might miss it altogether thus giving the appearance of no atrophy. It didn't matter in the long run whether I got the ok from the doctors or not. There was no way anyone was going to get me to "challenge" by eating anymore poison. I was dying and when the light bulb went on, there was no turning back. I knew and that was all that really mattered. It's nobody elses' business as to what my official DX was (even though I did get a positive DX for celiac.) oOf course, that's a lot easier for me to say now than it was back then. It was brutal at first. All I know is that when I went rigorously gluten free that I went from dying to recovery and from recovery to living and from living to thriving. Granted, I still have a ways to go but just this past fall I was talking to some rheumatoid arthritis researchers about how, after my celiac diagnosis and switch to a very low carb gluten free diet and strategies to restore my gut flora, that my supposedly irreversible joint damage sort of kind of began to reverse. My hands, which used to be claws are almost completely back to normal. My elbows, which I could no longer fully straighten to within about 15 degrees of straight, are now capable of full range of motion. I have no gel time when it used to take two plus hours to get past shuffling. Thing is, according to the initial blood work, I shouldn't have received the scope. Even with all that Fasano is doing and that others have contributed to the field, I don't think we're anywhere close to putting it all together in a way that is truly helpful. I think that the commercialization of the celiac diet has messed things up so severely that many are no better off than pre diagnosis because of it. I live and eat on the lunatic fringe now but do so happily because I have my life back. The perfect storm, the confluence of so many food and environmental and medical (pharmaceutical) changes that have happened over the last fifty years are wreaking havoc with our genetic expression and we are the proverbial canaries in the cage.. but the cage is getting mighty crowded. Anyway... rant over. I have way too much catching up to do here and I hope I see some old friends.

CS

Thanks for letting us know how much better your doing. I could have written some of your post as I also had severe joint involvement. It is so nice to be able to button a shirt, hold a pen or a screwdriver and type again. I also had negative blood tests but my GI didn't get to do the endo because he demanded a gluten challenge. He told me I only had to do one for a couple of days since I had only been gluten free (and day and night D free) for a couple of months. Long story short when it came time for me to leave for the procedure I was laying on the bathroom floor bleeding freely from my intestines. I had never bled before the challenge but even now 10 years later bleeding is part of my gluten reaction but thankfully not as severe. I got my diagnosis after many many years of severe illness and nerve impact that would take years to resolve. I wish doctors wouldn't put so much faith in those blood tests especially in those of us with neuro and joint issues. If they had told me when they first started testing me for celiac to try the diet despite the negative bloods maybe, just maybe I would have had a full recovery. Don't get me wrong I am happy to have recovered as much as I have but it would be nice not to have to worry about the kidney and heart damage that all those years of inflammation gave me.

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And there have been awful instances of family members glutening people on purpose, lying that something was gluten free to prove to them they don't really have a problem with gluten. One poor woman was glutened on purpose by a family member and then after she ate a whole meal that sad excuse for a human being gloated and said "See you just ate gluten and you're fine." The celiac person broke out in a horrible DH rash all over her body and was very sick from that.

So you have to know your audience.

Very good point about needing to know your audience, I've read stories like that too and they just horrify me, people wouldn't do that with rat poison (I hope!) but they do that with something that's going to hurt the person very much. It's just awful, and I don't understand why people could be so awful when they'd probably be supportive if it were cancer or heart disease. Gluten is weird, it makes people behave so strangely.

If the blood tests have a 20-30% false negative rate, you'd think they'd try real hard to come up with a better test? Even the genetic tests aren't very good. They can tell if you *might* get Celiac, but that's only if you have DQ2 and/or DQ8. They know there are more genes involved, but say it's rare to have them. Maybe it's not so rare? Maybe those without the two main ones are being mis-Dxed too?

I would love to know more about the different genes because my test results were so emphatic that I could not possibly have it because I don't have the DQ2 or DQ8 genes. I have something wrong with me that not eating gluten fixes, I wish someone was interested enough in researching why that might be rather than being fixated on it not possibly being celiac. It's frustrating.

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Enterolab is promising but as far as I know he still hasn't been peer reviewed has he? It all takes so much time and red tape for studies to be done too. And then there is the American know it all syndrome where we don't always take studies and testing from other countries into account because we think we have to invent everything for it to be valid.

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Enterolab is promising but as far as I know he still hasn't been peer reviewed has he? It all takes so much time and red tape for studies to be done too. And then there is the American know it all syndrome where we don't always take studies and testing from other countries into account because we think we have to invent everything for it to be valid.

I know! How many countries are so far ahead of us in this, yet we've decided we know best? I think part of it is that our medical care system is so controlled by big pharma, and there's no drug to take to cure Celiac is there?

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Thanks for letting us know how much better your doing. I could have written some of your post as I also had severe joint involvement. It is so nice to be able to button a shirt, hold a pen or a screwdriver and type again. I also had negative blood tests but my GI didn't get to do the endo because he demanded a gluten challenge. He told me I only had to do one for a couple of days since I had only been gluten free (and day and night D free) for a couple of months. Long story short when it came time for me to leave for the procedure I was laying on the bathroom floor bleeding freely from my intestines. I had never bled before the challenge but even now 10 years later bleeding is part of my gluten reaction but thankfully not as severe. I got my diagnosis after many many years of severe illness and nerve impact that would take years to resolve. I wish doctors wouldn't put so much faith in those blood tests especially in those of us with neuro and joint issues. If they had told me when they first started testing me for celiac to try the diet despite the negative bloods maybe, just maybe I would have had a full recovery. Don't get me wrong I am happy to have recovered as much as I have but it would be nice not to have to worry about the kidney and heart damage that all those years of inflammation gave me.

And yet, here I am after a very rough stretch of days. Granted, It is nowhere near as bad as it used to be .. but... Ate some organic stuff that slipped under the radar as far as having some ingredients I haven't had for years. Honest mistake.. but.. my joints feel like one of those barbequed chickens from the store that you could just pull apart and I have had intestinal spasms. Yes.. it certainly seems that all the reactions are far worse once the culprit is identified and removed from the diet. It's like it's this red flag that emphatically says "no more....EVER!" I often wonder where I would be had I not had a lifetime of fallout from all this. People like to say I am so lucky to have figured it all out but the wounds go so deep it's hard to get anyone to really understand. I look so much better (well.. that's a matter of opinion) so when I have a day like today, as rare as it has become, I still have a hard time and feel like I need to explain why I just feel like doing nothing until the pain, nausea and discomfort go away.. And yet I press on doing what I can.. I also worry about the long term consequences of such severe systemic inflammation and wonder what it has done to my outlook for longevity. Because of that, I try to live much more for today. That has been, perhaps, the greatest upside of this.

CS

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    • need advice
      Welcome!  The only way to find out if you have celiac disease is to get tested.  Here are the tests that your GP can order for you: http://www.cureceliacdisease.org/screening/ https://celiac.org/celiac-disease/diagnosing-celiac-disease/screening/ THIS IS IMPORTANT!  YOU MUST BE CONSUMING GLUTEN DAILY FOR THE BLOOD TESTS TO BE ACCURATE.  THIS ALSO INCLUDES THE ENDOSCOPY (BIOPSIES) WHICH ARE DONE BY A GI.   Anxiety can be a symptom for celiac disease.  Please do some more research so that you can get a proper diagnosis.  Can you go gluten free?  Sure.  That's what my hubby did 15 years ago per the very poor advice of my allergist and his GP.   Twelve years later, I was diagnosed.  Weird, huh?  Anyway, hubby will tell you that I get way more support.  He get's a lot of eye rolling.  Plus, our kid (and my folks and siblings) get screened every few years because I have a diagnosis.  My kid gets tested every couple of years even without symptoms because you can be symptom free and still have celiac disease.  celiac disease is genetic.   It is an autoimmune disorder triggered by gluten.  It is the only autoimmune disorder that is triggered by something known.  If you have RA, MS or Lupus, for example, doctors do not know what actually triggers these other autoimmune disorders.   So, Keep researching.  
    • Newbie: mother to coeliac kids
      If I am rembering correctly,  Marsh 4 is the worst damage.  So he should avoid dairy products like cheese, milk, butter, cows milk ice cream for a couple of months. celiac damages the tips of the villa that help to digest lactose ( which is in most dairy).  Being unable to digest dairy will lead to more bloating, gas, etc.. 
    • need advice
      I'll keep this as short as possible, sigh. I remember having constipation all the time till i was 10 or 11 then i started getting diarrhea all the time. Ive never been able to pin my diarrhea to a certain type of food it always has been at random. Or it seemed that way. Sometimes ill have normal BMs for a couple weeks then diarrhea for a week or normal for a day or two diarrhea for a day or 2. I started getting tingly numb hands this year, i get sick all the time, i had one rash on my stomach i couldnt get rid of for years the doc said was dermatitis. So many more symptoms that line up with celiac. Heres the beef though- 7 months ago i had my first panic attack ever. I thought it was triggered by giving up chewing tobacco and the withdrawals coupled with stress at work and being a new dad but after reading about the connection between gluten im not so sure. The past 7 or 8 months have been hell. Constant anxiety, i dont get as kany panic attacks as i did in the beginning but now im suffering from depression. So, i started gluten free 2 days ago. The second day i started having horrible anxiety and a panic attack like my first one. Extremely intense.  Is that a sign that maybe i do have celiac or intolerance that coming off would make symptoms worse? I want to get tested but ive been to the ER 3 times and seen so many docs, psychiatrists and therapists trying to figure out a cause, i cant afford anymore. I dont think i can just one day bam! Have all this anxiety without a cause. Can i just do my best to stay gluten free and see what happens or is it very important to be tested? Also, will any gastro be able to test me? If i go to a gastro should i even bring up the anxiety and depression? Everytime i do i get a response similar to " its all in your head " and they just want to throw pills at me. I'm so lost to how my life got so messed up in 7 months. I need this to be the answer.
    • Newbie: mother to coeliac kids
      Until he starts getting better he really needs to stick with soft, bland foods. I put a mashed potato soup recipe in the recipes area. What is healthy for a normal person isn't necessarily good for an inflamed digestive system. Anything spicy, acidic should be avoided. Fruit is acidic. I've read that pickled cabbage is good, but you couldn't pay me to eat anything pickled when I was nauseous. Things that I think would be safe are: broth mashed potato soup (the am. cheese and butter make the broth taste great) Baked potato mushy meatballs, no spices other than salt low fat vanilla ice cream with whey in the ingredient list   If these things work out try adding summer squash cooked in olive oil, add salt Summer squash tastes good in mashed potato soup.   Twice as many small meals are easier on your digestive system.   I am not a doctor or nutritionist, just been there, done that, want to help.  
    • Newbie: mother to coeliac kids
      I've just had a call from out GP with biopsy results. She said it confirmed celiacs and has a March 4 level. Does this sound correct?  She said she expected it given his antibodies were the highest she had ever seen.  We have an appointment on Friday for follow up. At least we know for sure now. 
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    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
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      Larry
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      Hi Peaceflower, Just wanted to say thank you for the chat.
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    • ukuleleerika

      Hello! I am new to this Celiac website... Is there anyone out there with Celiac AND extensive food allergies? My allergies include shellfish, dairy, eggs, cantaloupe, kiwi, mango, nuts, oranges, red dye, and more I can't think of. I went to the allergist about a year ago to see why I wasn't feeling well, and once everything was eliminated, I still didn't feel well. We did more testing to find out I had celiac as well as allergies to cattle as well as rye grass (I live on a farm basically). This was back in January 2016. I recently had my endoscopy with the gastroenterologist a week ago. I have no idea what to do or what to eat... So fish and potatoes for me!
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