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My Biopsy Word For Word
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This is good to know. Thank you. I am going by current medical literature, which as we know is ever changing.

I do question the validity of diagnosing celiac based on 2/3 positive tests. That's an exceptionally unscientific way of making a diagnosis. I would be more inclined to look at your pre-test probability (the fact that immediate family history is positive and the fact that you have some symptoms to suggest celiac). In other words your chance before taking the test was pretty high already so that the biopsy results, even though inconclusive, allow a doctor to comfortably make a diagnosis. If your pre-test probability was very low (no symptoms and no family history) I would be less comfortable making a diagnosis with a negative bloodwork and inconclusive biopsy.

I also wonder about the sensitivity of the TTG blood test. Current knowledge indicates that 99% of celiacs will have positive tests, meaning a false negative is unlikely. Can anybody speak to their ecpxperience with this?

What's with you? Are you trying to make me think my diagnosis was wrong? The damage my biopsy picked up is only caused by very few things. As all other causes have been ruled out, that leaves celiac. What else would you have me do? Wait until I get cancer or something? Would that be convincing enough?

The antibody test when positive is 99% right. But when negative it's only 70% right. 30% of celiac sufferers will always be negative on blood tests.

I even had an hiv test to rule out hiv atrophy.

So given my symptoms, positive biopsy, positive gene test, all other causes ruled out, and positive response to the diet, what is your diagnosis of my condition?

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What's with you? Are you trying to make me think my diagnosis was wrong? The damage my biopsy picked up is only caused by very few things. As all other causes have been ruled out, that leaves celiac. What else would you have me do? Wait until I get cancer or something? Would that be convincing enough?

The antibody test when positive is 99% right. But when negative it's only 70% right. 30% of celiac sufferers will always be negative on blood tests.

I even had an hiv test to rule out hiv atrophy.

So given my symptoms, positive biopsy, positive gene test, all other causes ruled out, and positive response to the diet, what is your diagnosis of my condition?

I'm simply being objective here. The TTG should have a sensitivity of 95-99%, meaning there should only be a false negative of 1-5% of celiacs. This is why it's used as a screening test. If it was only 70% sensitive then it would make a horrible screening test. This stat may change with our evolving understanding of the disease.

The only reason it's important to be so confident with a diagnosis is the radical lifestyle changes that are involved. Sure, the gluten-free diet is arguably healthier than a gluten containing diet (when done right), however it's important to realize that true celiac disease requires exceptional attention to detail when it comes to ingredients in food and strict avoidance of even minute amounts gluten.

I'm just being objective in saying that it is unscientific to diagnose a condition based on "1/3 genetic screening, 1/3 TTG result etc". This is not a matter of personal opinion.

What ultimately matters is that if you have symptomatic improvement on the gluten-free diet and a high suspicion for celiac disease based on the biopsy results and family history, then stick to the diet.

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I don't understand why Dr.s say such scary things! :o

I tested negative in my bloodwork, but had severe damage when scoped. I'm glad the GI scheduled the scope at the same time as she ordered the blood test. Some Dr.s won't scope with negative blood tests.

Anyways..we have our answers now. It looks like yours was caught before you got severe intestinal damage? I'm glad you've gotten the answers to put you on the road to good health. :D

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I'm simply being objective here. The TTG should have a sensitivity of 95-99%, meaning there should only be a false negative of 1-5% of celiacs. This is why it's used as a screening test. If it was only 70% sensitive then it would make a horrible screening test. This stat may change with our evolving understanding of the disease.

The only reason it's important to be so confident with a diagnosis is the radical lifestyle changes that are involved. Sure, the gluten-free diet is arguably healthier than a gluten containing diet (when done right), however it's important to realize that true celiac disease requires exceptional attention to detail when it comes to ingredients in food and strict avoidance of even minute amounts gluten.

I'm just being objective in saying that it is unscientific to diagnose a condition based on "1/3 genetic screening, 1/3 TTG result etc". This is not a matter of personal opinion.

What ultimately matters is that if you have symptomatic improvement on the gluten-free diet and a high suspicion for celiac disease based on the biopsy results and family history, then stick to the diet.

The antibody test is NOT diagnostic of but suggestive of celiac disease!!!! 30% of all celiacs will test negative on the blood test. 5% of celiacs don't have the genes. But 100% of celiacs will have intestinal damage, even if its missed in the biopsy!

All a negative blood test means is your body is either compensating or fighting the disease in other ways. Also there is a question about whether in those who test negative, that only means the TTG antibodies are just not floating around the blood stream. The auto immune response in celiacs is in the small intestine not in the blood stream and the antibodies are produced in the gut, hence positive stool tests for the TTG antibodies. Unfortunately i cant have that test done here in Australia.

I have been reading a lot about the illness over the last 2 months while being tested and sme experts in the field are starting to think the antibody test is inaccurate 80% of the time not only because of false negatives, but they are starting to realise high rates of false positives.

My Dr only tested for TTG and IgA, but there are other cells that the body may use instead but i was not tested for those.

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i only just noticed that my antibody test did not include total IgA levels either, which would have seen if i was IgA deficient and thus producing the negative result.

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i only just noticed that my antibody test did not include total IgA levels either, which would have seen if i was IgA deficient and thus producing the negative result.

I am interested in your information about the sensitivity of the TTG test, as I too have a positive family history with negative bloodwork. My understanding was that a false negative was rare and hence the hesitancy of most doctors proceeding with an endoscopy in the setting of negative bloodwork. It is true that if you are IgA deficient the negative TTG will be invalid, however in that case an IgG TTG test can be ordered which should come back positive (if IgA deficiency was the cause of the false result)

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I am interested in your information about the sensitivity of the TTG test, as I too have a positive family history with negative bloodwork. My understanding was that a false negative was rare and hence the hesitancy of most doctors proceeding with an endoscopy in the setting of negative bloodwork. It is true that if you are IgA deficient the negative TTG will be invalid, however in that case an IgG TTG test can be ordered which should come back positive (if IgA deficiency was the cause of the false result)

your interested in my information? LOL heard of google?

im only passing on what i have read and what my specialist told me. The antibody tests only test for antibodies to 33-mer gliadin. However this is only one fraction of gluten and celiacs can react to other sections of the gluten protein which of course wont show on current tests because we are not looking for them.

Also celiac disease can go into a type of remission for a time and during this time no antibodies are present. Also those with milder forms of the disease or at the early stages will not yet have antibodies. There is also research that shows blood stream antibodies only occur once gluten gets through the gut barrier and into the blood stream. Its interesting that stool tests do show a lot of the time, high levels of the very antibodies that people are seronegative for. The immune response is happening in your gut, nowhere else.

i had the IgG test too and it was negative. Yet i have celiac disease. Im not going to worry about how or why but if the specialists who are highly trained in this area tell me that false negatives are common and that some celiacs are always seronegative but that does not mean you dont have it, i tend to believe them. My small intestine has Villous atrophy associated with crypt hyperplasia and a high level of lymphocytes. You can focus on the blood tests till the cows come home, but at the end of the day i still have celiac, regardless of any blood tests. the biopsy proves it.

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I will also add a tidbit of information here. In the case of celiacs with dermatitis herpetiformis; we test negative on the blood panel even more often than celiacs with the GI issues. We also have patchier damage in the gut so it's harder to find with an endoscopy/biopsy. Thus, it's even more difficut for us to get an "official" dx. We can have the area adjacent to a lesion biopsied but we have to have been actively eating gluten just like for the blood panel & endoscopy PLUS there is a 37% false negative return on the biopsy. AND you had better have a derm who REALLY knows their stuff doing the biopsy. All in all; it's harder than heck to get a dyed in the wool dx.

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No reason for you to get snarky. Any reputable source I came across suggests the ttg has 95-99% sensitivity. The fact that antibodies predominate in the gut is irrelevant - If the test works, it works. If you have other information I am interested to find out where it's from, that's all. This is also for personal reasons as I am wondering whether I should push for a scope myself.

your interested in my information? LOL heard of google?

im only passing on what i have read and what my specialist told me. The antibody tests only test for antibodies to 33-mer gliadin. However this is only one fraction of gluten and celiacs can react to other sections of the gluten protein which of course wont show on current tests because we are not looking for them.

Also celiac disease can go into a type of remission for a time and during this time no antibodies are present. Also those with milder forms of the disease or at the early stages will not yet have antibodies. There is also research that shows blood stream antibodies only occur once gluten gets through the gut barrier and into the blood stream. Its interesting that stool tests do show a lot of the time, high levels of the very antibodies that people are seronegative for. The immune response is happening in your gut, nowhere else.

i had the IgG test too and it was negative. Yet i have celiac disease. Im not going to worry about how or why but if the specialists who are highly trained in this area tell me that false negatives are common and that some celiacs are always seronegative but that does not mean you dont have it, i tend to believe them. My small intestine has Villous atrophy associated with crypt hyperplasia and a high level of lymphocytes. You can focus on the blood tests till the cows come home, but at the end of the day i still have celiac, regardless of any blood tests. the biopsy proves it.

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No reason for you to get snarky. Any reputable source I came across suggests the ttg has 95-99% sensitivity. The fact that antibodies predominate in the gut is irrelevant - If the test works, it works. If you have other information I am interested to find out where it's from, that's all. This is also for personal reasons as I am wondering whether I should push for a scope myself.

Welcome Troy and Dave!

Troy - glad you are diagnosed and on your way to healing -- very sorry the process was rough (unfortunate that is often the case - took me 25 years).

Dave - the test doesn't work - it is only an indicator. If it is positive, it IS positive. The problem is when the test is negative it does not mean you don't have celiac disease or severe gluten intolerance.

If a person has a negative test but has symptoms of Celiac Disease they have options. Endoscopy with biopsy or removing gluten completely from the diet. If either the endo reveals damage or symptoms are improved on a gluten-free diet - this should be enough to know that gluten needs to be removed. There can be false negative with endoscopy as well -- having a GI that is familiar with Celiac Disease and takes enough biopsies can help, but the small intestine is very long and the portion viewed by scope is very short thus not accurate in all cases.

I first heard the positive is positive and negative is not reliable information here when I was first diagnosed - now my Celiac Doctor at UCSD says the same thing -- many doctors are still not familiar with accurate celiac diagnosis techniques. For many years Celiac was dismissed as a childhood only disease or that one had to be underweight or have chronic diarrhea -- hence the reasons so many people continue to go undiagnosed for so long.

I was diagnosed in my 40s by symptoms, blood test, severe intestinal damage. I had gene testing done because my children all tested negative although they had many symptoms -- all three of my children and two grands have improved health from a variety of symptoms from removing gluten from their diets.

I certainly hope that one day we will have tests that indicate celiac 95-99% of the time -- that would be wonderful.

Good Luck to you both!

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Welcome Troy and Dave!

Troy - glad you are diagnosed and on your way to healing -- very sorry the process was rough (unfortunate that is often the case - took me 25 years).

Dave - the test doesn't work - it is only an indicator. If it is positive, it IS positive. The problem is when the test is negative it does not mean you don't have celiac disease or severe gluten intolerance.

If a person has a negative test but has symptoms of Celiac Disease they have options. Endoscopy with biopsy or removing gluten completely from the diet. If either the endo reveals damage or symptoms are improved on a gluten-free diet - this should be enough to know that gluten needs to be removed. There can be false negative with endoscopy as well -- having a GI that is familiar with Celiac Disease and takes enough biopsies can help, but the small intestine is very long and the portion viewed by scope is very short thus not accurate in all cases.

I first heard the positive is positive and negative is not reliable information here when I was first diagnosed - now my Celiac Doctor at UCSD says the same thing -- many doctors are still not familiar with accurate celiac diagnosis techniques. For many years Celiac was dismissed as a childhood only disease or that one had to be underweight or have chronic diarrhea -- hence the reasons so many people continue to go undiagnosed for so long.

I was diagnosed in my 40s by symptoms, blood test, severe intestinal damage. I had gene testing done because my children all tested negative although they had many symptoms -- all three of my children and two grands have improved health from a variety of symptoms from removing gluten from their diets.

I certainly hope that one day we will have tests that indicate celiac 95-99% of the time -- that would be wonderful.

Good Luck to you both!

See I'm just wondering about a credible source. The most up to date medical literature indicates high sensitivity of ttg. This means that false negatives occur 1-5% of the time. This means that a negative result is accurate 95-99% of the time. There are many ways to slice it. The test is supposed to be highly sensitive and highly specific meaning that either a negative or a positive result are both highly accurate. I'm not disagreeing with others here but I would like a source more reliable than hearsay that suggests the ttg is unreliable. First hand from a GI i was told that only a couple people in his career with a negative result ended up with a positive biopsy.

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IMHO

Don't think you are going to find what you are looking for in current medical literature. The good news is there is more current information about Celiac Disease than ever and much of it is more accurate. The bad news is there is a long way to go in understanding Celiac Disease along with all other autoimmune diseases.

The term credible source is interesting. The information provided and used from one doctor to the next can vary greatly - most of the posts in this forum regarding testing came from doctors analyzing the same information in different ways.

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See I'm just wondering about a credible source. The most up to date medical literature indicates high sensitivity of ttg. This means that false negatives occur 1-5% of the time. This means that a negative result is accurate 95-99% of the time. There are many ways to slice it. The test is supposed to be highly sensitive and highly specific meaning that either a negative or a positive result are both highly accurate. I'm not disagreeing with others here but I would like a source more reliable than hearsay that suggests the ttg is unreliable. First hand from a GI i was told that only a couple people in his career with a negative result ended up with a positive biopsy.

I'm sorry if I sound narky, its not my intention. This is something you don't seem to be grasping.

There are two answers to an antibody test, positive and negative. A positive result has a 95-99% sensitivity, thus only 1-5% chance the positive diagnosis is wrong. It does NOT mean false negatives occur 1-5% of the time. If your result is negative it means its 70% accurate and that 30% of negative diagnosis is wrong, hence why the antibody test in NOT diagnostic of Celiac disease as there are other medical conditions that can yield the same positive result. From what I've been told here in Australia the antibody test is the same as the genetic test, simply an indicator and everyone still has to have a biopsy for confirmation.

My sisters antibody test was off the chart! But they are holding off on the diagnosis until her biopsy.

Its like saying everyone who has chest pain is having a heart attack , but if your not having chest pain its not a heart attack yet we all know its possible to have a heart attack with no pain at all! Its indicative of, but not diagnostic of a heart attack.

Even with my positive biopsy and genetic test my specialist only said yes its celiac because along with those two positive tests, I was responding to the diet. If it was not Celiac, there would have been no change on the diet right?

It sounds to me like your questioning your own negative diagnosis. All I can tell you is listen to your body, you know your body better then any test can ever tell you. I was diagnosed with multiple illnesses over the last 15 years and none of them sat well with me because I knew inside me that was not what was happening, and through perseverance I got the truth in the end.

You can pass an ECG yet still have heart disease, you can have low blood cholesterol but still have blocked arteries, you can have no blood in your stool and still have bowel cancer. All tests have a margin of error. Even my antibody results from the lab have a disclaimer on it saying "No diagnostic test is 100% accurate, further investigation is needed if results are negative yet symptoms still point to illness"

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I'm sorry if I sound narky, its not my intention. This is something you don't seem to be grasping.

There are two answers to an antibody test, positive and negative. A positive result has a 95-99% sensitivity, thus only 1-5% chance the positive diagnosis is wrong. It does NOT mean false negatives occur 1-5% of the time. If your result is negative it means its 70% accurate and that 30% of negative diagnosis is wrong, hence why the antibody test in NOT diagnostic of Celiac disease as there are other medical conditions that can yield the same positive result. From what I've been told here in Australia the antibody test is the same as the genetic test, simply an indicator and everyone still has to have a biopsy for confirmation.

My sisters antibody test was off the chart! But they are holding off on the diagnosis until her biopsy.

Its like saying everyone who has chest pain is having a heart attack , but if your not having chest pain its not a heart attack yet we all know its possible to have a heart attack with no pain at all! Its indicative of, but not diagnostic of a heart attack.

Even with my positive biopsy and genetic test my specialist only said yes its celiac because along with those two positive tests, I was responding to the diet. If it was not Celiac, there would have been no change on the diet right?

It sounds to me like your questioning your own negative diagnosis. All I can tell you is listen to your body, you know your body better then any test can ever tell you. I was diagnosed with multiple illnesses over the last 15 years and none of them sat well with me because I knew inside me that was not what was happening, and through perseverance I got the truth in the end.

You can pass an ECG yet still have heart disease, you can have low blood cholesterol but still have blocked arteries, you can have no blood in your stool and still have bowel cancer. All tests have a margin of error. Even my antibody results from the lab have a disclaimer on it saying "No diagnostic test is 100% accurate, further investigation is needed if results are negative yet symptoms still point to illness"

Yeah I definitely agree with your points of view. I'm going to get it investigated further.

As for the sensitivity thing, it seems you have it backwards. A high sensitivity means that you are going to catch most people with the disease. 99% sensivity means that you are only going to miss 1% of the diagnoses (in the form of a false negative). In other words a sensitive test is good at ruling out the condition tested for. A high sensitivity does not mean its a good test, however, if it lacks in specificity. A test high in specificity means that a positive test is accurate (good at ruling in the disease, ie: very few false positives). If a test is high in sensitivity but lacks specificity it's like taking an enormous net to catch everything. Sure you get what you are fishing for, alongside other things you don't want to catch. On the other hand if the test is very specific, it means you only catch what you want to catch (though if this is coupled with poor sensitivity you are going to miss a lot of what you are trying to catch). So if you are fishing for salmon with a big net (high sensitivity) you will catch all your salmon +\- other fish (not miss a diagnosis, if you will). If your net is specific you will only catch salmon (not make a false diagnosis). Every test has a combination of the two qualities.

Confusing I know but I hope this helps.

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look i don't want to keep going on about this so this is my final word LOL

at the end of the day the antibodies to gluten are produced in the intestines, not in any other part of your body so there is a real situation where they just don't make it into the blood stream. In Finland they realise this and now test the mucosa when they do biopsies to check for the antibodies there and thats exactly where they would be. They also agree with the stool test idea because the antibodies made in the intestine really have only one way to get out, they are not reabsorbed into the body. They bind to the gluten protein and off the go. It makes perfect sense that the stool would be the better test.

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Sensitivity is the probability of a + test, given the person is ill. 99% sensitivity means 1% of sick people will have a - result, even though they are ill.

Specificity is the probability of a - test, given the person is well. 99% specific means 1% of well people will have a + result, even though they are well.

Just to give a concise summary of your discussions. :P

(Also, IMHO, statistics are completely worthless when you're talking about an individual.)

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look i don't want to keep going on about this so this is my final word LOL

at the end of the day the antibodies to gluten are produced in the intestines, not in any other part of your body so there is a real situation where they just don't make it into the blood stream. In Finland they realise this and now test the mucosa when they do biopsies to check for the antibodies there and thats exactly where they would be. They also agree with the stool test idea because the antibodies made in the intestine really have only one way to get out, they are not reabsorbed into the body. They bind to the gluten protein and off the go. It makes perfect sense that the stool would be the better test.

With that line of reasoning we would be doing joint fluid sampling for diagnosing rheumatoid arthritis or performing heart biopsies to diagnose heart attacks. Enzymes and antibodies are present in the bloodstream. Let's agree to disagree because you have a high almighty attitude about when it comes to your understanding of things.

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With that line of reasoning we would be doing joint fluid sampling for diagnosing rheumatoid arthritis or performing heart biopsies to diagnose heart attacks. Enzymes and antibodies are present in the bloodstream. Let's agree to disagree because you have a high almighty attitude about when it comes to your understanding of things.

and with your line of reasoning i should just accept that my blood test was negative and that i don't have celiac. seriously why did you come on to my thread in the first place? is it your goal to try and undermine my health? are you trying to sow the seeds of doubt in my diagnosis? all your posts are focusing on my blood test and nothing else. why do you even need to understand my diagnosis?

my specialist, my gp and the lab dr who did the testing all agree i have celiac. what right do you have to come on here and question it continuously? your also ignoring and the other people who posted in this thread stating the same things i am.

the truth is the truth whether you believe it or not. there is no silver bullet in diagnosing celiac. if you think you have it then get all 3 tests. if your happy with your negative blood work then fine, go eat gluten and leave this forum for those who cant and need support not undermining.

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Let's agree to disagree because you have a high almighty attitude about when it comes to your understanding of things.

Wow is that the pot calling the kettle black or what! It is thinking like yours that almost cost me my life and did cost my quality of life for 15 years and left me with permanent damage. I don't know if you are diagnosed yourself but only had one test positive and are in severe denial or if you are a medical person who wants to justify all the suffering you have contributed to by insisting that 3 out of 3 needs to be positive for a diagnosis or whether you just have some other issue going on.

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and with your line of reasoning i should just accept that my blood test was negative and that i don't have celiac. seriously why did you come on to my thread in the first place? is it your goal to try and undermine my health? are you trying to sow the seeds of doubt in my diagnosis? all your posts are focusing on my blood test and nothing else. why do you even need to understand my diagnosis?

my specialist, my gp and the lab dr who did the testing all agree i have celiac. what right do you have to come on here and question it continuously? your also ignoring and the other people who posted in this thread stating the same things i am.

the truth is the truth whether you believe it or not. there is no silver bullet in diagnosing celiac. if you think you have it then get all 3 tests. if your happy with your negative blood work then fine, go eat gluten and leave this forum for those who cant and need support not undermining.

I actually merely corrected some misunderstanding on your end. It seems you didn't handle that too well.

I never questioned the diagnosis, I only asked for the source of your information (to which you gave me a smart ass reply about using google and then gave me a misguided lesson on blood tests). The purpose of this board is to educate each other, is it not? By posting a scientific question I assumed you wanted somewhat scientific answers. My only goal is to keep an objective yet open mind. That's why I asked for your source of information - for my learning too. I'm not intentionally playing devils advocate to upset you.

I am not here to make you doubt anything. As I said your family history along with biopsy results make a convincing case for celiac disease. If I was in your shoes I would absolutely stick to the diet. It is hard at first but I've tried it for some months and it does get significantly easier (especially if your symptoms respond).

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And wouldn't it be fair davemu for you to post the source of your information? You have not done that yet you ask the op to do so. Please provide links for documentation of your information.

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Systematic review: the use of serology to exclude or diagnose coeliac disease (a comparison of the endomysial and tissue transglutaminase antibody tests).

Authors

Lewis NR, Scott BB.

----------

Meta-analysis: deamidated gliadin peptide antibody and tissue transglutaminase antibody compared as screening tests for coeliac disease.

Authors

Lewis NR, Scott BB.

Journal

Aliment Pharmacol Ther. 2010 Jan;31(1):73-81.

----

Old and new serological tests for celiac disease screening.

Authors

Volta U, Fabbri A, Parisi C, Piscaglia M, Caio G, Tovoli F, Fiorini E.

Journal

Expert Rev Gastroenterol Hepatol. 2010 Feb;4(1):31-5.

I will concede that the reported sensitivity is closer to 93%, not 95-99 as some other studies. But it's a far cry from 70%.

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Dave,

Do you realize that you are referencing a study that is dated 2006? And, this study uses citations of studies dating from 1983 to 2004??? To further complicate things and to call into question the "results" of your referenced study is the pure and simple fact that one must then analyze the data and methodology of these SIGNIFICANTLY DATED citations???

There is extraordinary, mounting evidence which supports the very fact that the efficacy of the current testing regimes is SERIOUSLY FLAWED...

Furthermore, one must look upon "studies" conducted utilizing data from such locales as Iran and Turkey with a jaundice eye...

In conclusion... To vehemently argue a position based upon the conclusions of a "study" of "studies" which are seriously dated and for which one can not reasonably qualify the data and methodology is, at best, naive and, at worst, negligent. IMHO

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... And someone has yet to post one single piece of literature that speaks to this "extraordinary, mounting evidence". I don't know why my asking is just falling on deaf ears. I'm not vehemently arguing anything, if you cared to read my previous posts you would know that I just want to know where you guys are getting your numbers from. It seems like the source is as much a mystery to you as it is to me because nobody has mentioned any source but hearsay. If you use that as your evidence then there is no point to continue this coversation.

I should add that I didn't exclusively choose those articles (they were the first hits), but I don't know of anything newer that suggests these numbers are off. Again, instead of getting emotionally worked up that I dare question any of you, stop dodging my simple request and provide an actual resource (anything) to suggest our understanding of celiac bloodwork had evolved in the last years.

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I would suggest that you do more "googling" as the rest of us have... There is quite a bit of info in these forums which link to far more current "studies". It is, however, up to you to do more research.

And, yes, you were quite vehement in your position/support of your facts"...gleaned from "first hits" no less...

Everyone here is more than willing to help...you just need to be more open to it.

You might, also, spend a bit of time going through the articles on celiac.com. Many of the more recent articles reference more up-to-date studies and expert opinion. Could prove a good starting point... Google results placement will not, necessarily, provide you with the information you seek.

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    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
    • Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 
    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
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