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Diagnosis And Statistics

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According to the study the mean period of gluten exposure was 2.4 years, although it was likely longer as recent studies have shown that many celiacs are asymptomatic for many years before damage occurs that is severe enough to cause obvious symptoms.

Yet another article proving conslusively thay celiac disease is actually caused by the actual biopsy. ???

Using the biopsy as the gold standard 100% of patients not biopsied did not have celiac disease. So statistically only patients biopsied had celiac disease. The control (blood tests) do not have celiac disease since they didn't have a biopsy.

Meanwhile celaic STARTs with the biopsy, those of us who suffered before the biopsy presumably were making it up since to have celiac disease you must have a biopsy.

This seems like some stupid catch-22. Any study that studies celiac disease has to use the biopsy as a gold standard... (or be ridiculed) and regardless of any other symptoms for it to be called celiac disease they need a biopsy? Every time blood tests are compared its with biopsy as a gold standard and presumed to be 100% reliable...

Am I the only person thinks this is ironic?


Fere libenter homines id quod volunt credunt. (JC, De Bello Gallico Liber III/XVIII)

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The whole thing just pisses me off.


>>>>>>> tom <<<<<<<

Celiac 1st diagnosed as a toddler, in the 60s. Docs then, between bloodletting & leech-tending, said "he'll grow out of it" & I was back on gluten & mostly fine for 30yrs.

Gluten-free since 12-03

Dairy-free since 10-04

Soy-free since 5-07

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Meanwhile celaic STARTs with the biopsy, those of us who suffered before the biopsy presumably were making it up since to have celiac disease you must have a biopsy.

The whole thing just pisses me off.

Yes it does me, too. :(


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

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Hopefully someday they will realize that celiac is a 'spectrum' disorder and to only use total villi destruction as a diagnostic proof when so many are effected in so many other ways is frankly inhumane. It's too bad they insist that we be almost dead before they will diagnose, many times our lives are severely impacted long before that occurs.


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)

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 in time with proper diagnosis of Celiac November 2002

 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)

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Hopefully someday they will realize that celiac is a 'spectrum' disorder and to only use total villi destruction as a diagnostic proof when so many are effected in so many other ways is frankly inhumane. It's too bad they insist that we be almost dead before they will diagnose, many times our lives are severely impacted long before that occurs.

In your case the damage was both severe and not completely repairable...

I just don't see how if every single study uses biopsy as the only positive that we will ever get to that point.

celiac disease seems to be one of a very select group of diseases that is DEFINED by a test.. and because it has such a high false negative rate any suite of tests where the biopsy is positive and EVERY OTHER test is positve (including dietry response and the patient actualy getting better) they seem happy to throw out every other test...

Its impossible to actually prove the false negatives because the test is definitive... catch-22


Fere libenter homines id quod volunt credunt. (JC, De Bello Gallico Liber III/XVIII)

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I agree that it is frustrating that people have to suffer so long to get a diagnosis. It's really hard sometimes to reconcile making oneself sick to get a positive biopsy.

Hypothetically

An executive decree has just passed and we are now the head of the Celiac Consortium of the World. We have to decide the best way to diagnose people. What would be our proposal? What would strike the ideal balance between diagnosing the right people (not misdiagnosing positive or negative) and keeping the suffering to a minimum? Something that could be scientifically validated I mean, not just a "listen to your body" kind of thing.

This is not a challenge, but a serious question. I too was close to death when I got my diagnosis, and would like to make it so others do not have to go through the same.


-Colleen

Dx 8/05 via bloodwork and biopsy (total villous atrophy)

13-year old son Dx 11/05 via bloodwork and biopsy

Daughters (16 and 5) have tested negative via bloodwork

A woman is like a tea bag - you never know how strong she is until she gets in hot water. - Eleanor Roosevelt

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in my opinion biopsy doesn't make sense, if you feel better without gluten you just go gluten free diet and that's it.

Why to do biopsy? to proof what?

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I agree that it is frustrating that people have to suffer so long to get a diagnosis. It's really hard sometimes to reconcile making oneself sick to get a positive biopsy.

Hypothetically

An executive decree has just passed and we are now the head of the Celiac Consortium of the World. We have to decide the best way to diagnose people. What would be our proposal? What would strike the ideal balance between diagnosing the right people (not misdiagnosing positive or negative) and keeping the suffering to a minimum? Something that could be scientifically validated I mean, not just a "listen to your body" kind of thing.

Ok, first thing we need a study BUT that study needs a control.

Italy manages to screen everyone at school.

Scientifically you can't have a perfect test.... you need to have one that has either flase negatives or false positives but screen everyone at school and awareness sky rockets. We need more accurate controls on blood tests, most studies have to presume that celiac disease is so rare in the general population that serology for the general population is used as a control. We need realistic figures for all age groups, not apply a general figure to toddlers...

The next big flaw in most comparitive diagnostic studies is that people actually get gluten-free diets when they say they do. Unfortunately we know this is often not the case.

For a control we ned a set of volunteers who are given only food tested to be 100% gluten-free. Supposing we had the resources we would rent a huge house and gut the kitchens .. make them 100% gluten-free and carry out the tests here. The house would need to be in a area NOT growing wheat...

No food would be allowed in that was not TESTED... (and I mean tested ... full whack GC-MS so the house needs its own lab, sterile of gluten)...

Everyone in the study, controls and not would be fed 100% tested food... we would be tested daily for blood counts .. and the fluctuations mapped.

A second house would house the "eating gluten group". Everyone here would be the "normal test" and also get blood tests daily... anyone who then tests positive would be moved to the gluten-free house and removed from the control group.


Fere libenter homines id quod volunt credunt. (JC, De Bello Gallico Liber III/XVIII)

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It frustrates me when people, including doctors, act like the only way to get diagnosed is to have a positive biopsy. More and more it's becoming widely accepted that positive Ttg tests, along with the celiac panel, and positive dietary response are acceptable means of diagnosis. In theory positive Ttg can be associated with other autoimmune disorders, for example some forms of liver failure or autoimmune diabetes, but if you also have the celiac symptoms and they improve on the diet and after time and your Ttg drops, that seems like excellent proof of celiac disease. Sometimes I feel like some people think I sidestepped diagnosis for my son because I did not have him biopsied, but I feel 100% confident in my decision. Can the people who have positive blood work and negative biopsies who go back on gluten say the same?


Jenny

Son 6 yrs old, Positive blood work, Outstanding dietary response, no biopsy.

Household mostly gluten free since 3/07

Me: HLA-DQ 02 & 0302 (DQ 08), which I ran & analyzed myself!Currently gluten lite, negative tTG, asymptomatic

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Scientifically you can't have a perfect test.... you need to have one that has either flase negatives or false positives but screen everyone at school and awareness sky rockets. We need more accurate controls on blood tests, most studies have to presume that celiac disease is so rare in the general population that serology for the general population is used as a control. We need realistic figures for all age groups, not apply a general figure to toddlers...

I have a theoretical test. It would be pricey, if it works at all, but it would be fairly accurate. Unfortunately, it would be difficult to get the money to test it. The medical community accepts only biopsy proven Celiac disease, and I just don't happen to believe that a destroyed intestine is the definition of the disease; it's just one of the symptoms.

Dunno. I've actually been thinking about this for a while. Maybe I'll see if I can get my boss to foot the bill for a few trials (on myself - no biopsy) to see if it would even work.


"But then, in all honesty, if scientists don't play god, who will?"

- James Watson

My sources are unreliable, but their information is fascinating.

- Ashleigh Brilliant

Leap, and the net will appear.

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The medical community accepts only biopsy proven Celiac disease, and I just don't happen to believe that a destroyed intestine is the definition of the disease; it's just one of the symptoms.

I've never heard it put exactly this way before, but yes--that is a perfect explanation. Perhaps, the villi damage is mearly a symptom, and one that some get later rather than sooner.

I hope you get to do your testing, Jess--I would be most interested in hearing about it.


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

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Like many things in the medical community, it comes down to $$$$.

The doctors don't earn a penny if you change your diet and your symptoms go away. Neither does the pharmaceutical industry.

But the doctors, pharm industry, and hospitals/surgical centers all get quite rich just from your endoscopy. The doctors and the pharm industry get even richer when you have to buy meds that supposedly "treat" your symptoms while you continue to eat gluten, thereby causing more and more damage.

The insurance industry, of course, supports this 1005, as they are also funded in part by the pharm industry.

The whole thing is shockingly unethical.

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