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My Biopsy Word For Word


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#16 troykm

 
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Posted 24 July 2012 - 06:07 PM

When it rains it pours! Just got my genetic test back. I have both the main genes and 7 subsets. Hooray I won the genetic lottery lol!
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#17 squirmingitch

 
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Posted 24 July 2012 - 06:48 PM

I guess that's what you call fate!
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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.

 


#18 troykm

 
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Posted 24 July 2012 - 07:26 PM

but seriously, a very big big thank you to everyone on this forum who answered my posts and provided help.

Thank you all :-)
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#19 davemu

 
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Posted 26 July 2012 - 08:42 PM

The issue here is that they did a biopsy with a negative TTG. Usually one stops at a negative blood test unless one has convincing symptoms of celiac and/or a strong family history. This is why your doc is a bit unsure of how to interpret these results. That being said, in a otherwise healthy person with no recent gastrointestinal infection the pathology report is in keeping with celiac, though not conclusive. Did you have any soft markers of celiac on your bloodwork (anemia, low ferritin or folate, abnormal liver enzymes)? The real challenge here is that there is no way for you to use bloodwork as a measure of compliance to a gluten free diet (a negative test in a seropositive celiac on a gluten free diet will be negative after a few months)... There is an option of repeat biopsy after being gluten free but even then they might just inadvertently pick a healthy patch of bowel and you will erroneously conclude you have celiac. I suggest geneticist screening for HLA-DQ2 and DQ8. If you don't have these markers then it virtually eliminates the diagnosis. Unfortunately having these means you only MAY have it.
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#20 troykm

 
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Posted 26 July 2012 - 09:58 PM

The issue here is that they did a biopsy with a negative TTG. Usually one stops at a negative blood test unless one has convincing symptoms of celiac and/or a strong family history. This is why your doc is a bit unsure of how to interpret these results. That being said, in a otherwise healthy person with no recent gastrointestinal infection the pathology report is in keeping with celiac, though not conclusive. Did you have any soft markers of celiac on your bloodwork (anemia, low ferritin or folate, abnormal liver enzymes)? The real challenge here is that there is no way for you to use bloodwork as a measure of compliance to a gluten free diet (a negative test in a seropositive celiac on a gluten free diet will be negative after a few months)... There is an option of repeat biopsy after being gluten free but even then they might just inadvertently pick a healthy patch of bowel and you will erroneously conclude you have celiac. I suggest geneticist screening for HLA-DQ2 and DQ8. If you don't have these markers then it virtually eliminates the diagnosis. Unfortunately having these means you only MAY have it.


As per my post above, the genetic test was positive. The specialist is now convinced that its celiac. Nothing in my blood work was out of the ordinary although a few things were towards the low end but not under. She thinks my body was finding ways to compensate over the years. I also always took multivitamins so that could play a part too.

My two sisters were tested. One positive on blood and the other negative. But the negative one has the same symptom profile as me so she is having a biopsy anyway.
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#21 Roda

 
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Posted 26 July 2012 - 11:49 PM

I suggest geneticist screening for HLA-DQ2 and DQ8. If you don't have these markers then it virtually eliminates the diagnosis. Unfortunately having these means you only MAY have it.

That is not entirely true. There is at least one member I'm aware of on here that is diagnosed celiac without those two associated genes. Ravenwoodglas. Maybe she will chime in.
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Me:
Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease


DS2(age 9):
celiac disease(positive IgA tTG, no biopsy- 11/2010)


DS1(age 13):
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.


#22 troykm

 
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Posted 27 July 2012 - 01:51 AM

That is not entirely true. There is at least one member I'm aware of on here that is diagnosed celiac without those two associated genes. Ravenwoodglas. Maybe she will chime in.


Thats true. My specialist told me 5% of celiacs don't have the genes and there is also a 25%ish false negative with the blood test. In her eyes if your positive to two out of 3 (biopsy, blood and genetic test) then you have it. I was positive in biopsy and genetic. Remember too all three ttests will yield different results depending on what stage of the disease you are at and whether your body is able to cope/compensate for it.
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#23 ravenwoodglass

 
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Posted 27 July 2012 - 03:17 AM

That is not entirely true. There is at least one member I'm aware of on here that is diagnosed celiac without those two associated genes. Ravenwoodglas. Maybe she will chime in.


Well I don't have one of the two most common celiac genes, or at least the ones considered celiac associated here. However my genes are recognized as celiac associated genes in the far and middle east. Here they are considered the genes for RA.
I most definately have celiac and after years of misdiagnosis the diet resolved many, many issues that were thought to be unrelated to my extreme GI issues. I also have DH.
IMHO relying on gene testing at this point in time to rule out celiac is a big mistake. I have one adult child who was both biopsy and blood test positive but then had her genes tested and was told the other tests were a false positive and she isn't really celiac. All her issues were attributed to 'stress'.
IMHO in the end it is how we respond to the diet followed strictly that is the best and most conclusive test at this point. Until they gene test every celiac that is diagnosed for research purposes they really won't know how many genes are associated with celiac and 'gluten intolerance' (which I consider just another form of celiac). Gene testing can not firmly rule in or out celiac.
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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)

#24 davemu

 
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Posted 27 July 2012 - 07:35 AM

Well I don't have one of the two most common celiac genes, or at least the ones considered celiac associated here. However my genes are recognized as celiac associated genes in the far and middle east. Here they are considered the genes for RA.
I most definately have celiac and after years of misdiagnosis the diet resolved many, many issues that were thought to be unrelated to my extreme GI issues. I also have DH.
IMHO relying on gene testing at this point in time to rule out celiac is a big mistake. I have one adult child who was both biopsy and blood test positive but then had her genes tested and was told the other tests were a false positive and she isn't really celiac. All her issues were attributed to 'stress'.
IMHO in the end it is how we respond to the diet followed strictly that is the best and most conclusive test at this point. Until they gene test every celiac that is diagnosed for research purposes they really won't know how many genes are associated with celiac and 'gluten intolerance' (which I consider just another form of celiac). Gene testing can not firmly rule in or out celiac.


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?
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#25 ravenwoodglass

 
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Posted 27 July 2012 - 12:26 PM

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?


I don't think one can go off of a lack of family history since so many of us are misdiagnosed or diagnosed with something else (sometimes multiple something elses). Some of us will never show up positive on blood work, up to 30%, and biopsy is iffy also. If someone is not having symptoms then I wouldn't be concerned unless they are being screened because another family member is diagnosed and the non-symptomatic person is positive. When someone is having symptoms then a trial of the diet, IMHO, is the best test there is at present when all other celiac related testing is finished.
Current medical literature in the US is sometimes lacking a bit as far as celiac goes, IMHO. Other countries seem to have a better knowledge of celiac than we do here.
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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)

#26 troykm

 
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Posted 27 July 2012 - 02:50 PM

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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#27 davemu

 
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Posted 29 July 2012 - 10:27 AM

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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#28 Bubba's Mom

 
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Posted 29 July 2012 - 02:08 PM

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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#29 troykm

 
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Posted 29 July 2012 - 02:37 PM

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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#30 troykm

 
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Posted 29 July 2012 - 04:09 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.
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