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My Biopsy Word For Word


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#31 davemu

 
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Posted 29 July 2012 - 09:37 PM

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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#32 troykm

 
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Posted 30 July 2012 - 04:50 AM

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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#33 squirmingitch

 
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Posted 30 July 2012 - 08:58 AM

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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Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#34 davemu

 
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Posted 30 July 2012 - 10:16 AM

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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#35 GottaSki

 
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Posted 30 July 2012 - 01:41 PM

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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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#36 davemu

 
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Posted 30 July 2012 - 02:15 PM

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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#37 GottaSki

 
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Posted 30 July 2012 - 02:50 PM

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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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#38 troykm

 
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Posted 30 July 2012 - 03:14 PM

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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#39 davemu

 
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Posted 30 July 2012 - 03:49 PM

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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#40 troykm

 
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Posted 30 July 2012 - 07:19 PM

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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#41 Jestgar

 
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Posted 30 July 2012 - 07:45 PM

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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#42 davemu

 
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Posted 30 July 2012 - 11:33 PM

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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#43 troykm

 
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Posted 31 July 2012 - 03:13 AM

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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#44 ravenwoodglass

 
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Posted 31 July 2012 - 03:49 AM

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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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#45 davemu

 
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Posted 31 July 2012 - 08:27 AM

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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