Re: Biopsy for celiac

[Guest guest]

What is the DQ information below? I don't understand what DQ2 and DQ8 mean.

Thanks

Re: Biopsy for celiac

>

> Our genetic bloodwork was done by Promithius Labs in CA--where the GI

> sent the vial(s) (I can't remember if it was 1 or more at this

> point.)

>

> NO, you do NOT need to be eating gluten. The test was $440 for us.

> The rest was picked up by insurance. BIG " savings " over a

> biopsy...Gabby's endoscopy was over $2000 for our part!

I had myself DQ typed as a result of a control study. Did not event think to

consider celiac disease until I did a search on DQ2 and DQ8 as part of that

study. Later I was casually reading the top 15 papers and these papers at it

was like reading off symptoms I had for many years. " What is the celiac

[stuff]? "

Most honest physicians will tell you that the biopsy, by itself, gives

inconsistent results. DQ is another guide and antibodies are another guide.

If you have the positive biopsy then you know, but if you don't other signs

may cause you to suspect and change.

Between 1952 and 1956 when the cause of CD was known and the biopsy was

rare, the diagnosis for CD was to remove gluten for a month, observe,

challenge and observe (If the patients reaction was not severe enough). Many

patients after going gluten free for a month simply chose not to be

rechallenged.

If DQ typing leads you to go GF and this resolves most of the problem, it

is therefore adequate. In 1950s the cases that were being seen were the most

severe, life threatening situations, one expects positive biopsies.

The problem with waiting on a positive biopsy is that much damage is done,

particularly in late onset cases, by the time the biopsy is positive. In the

Finnish study

2 of their 28 died, based on what they were talking about

1 of lymphoma. The damage to the stem cells in the GI tract has been

examined, it is DNA damage and is akin to aging 2 or 3 years the GI tract

for every year the lymphocytes are elevated. This is were the cancer risk

comes from.

> We were told the endoscopy/biopsy was the " gold standard " and shows

> correct positive results/negative results for " most people " .

Gold is afterall just another metal.

> Uh,

> Gabby's not one of them. You HAVE to have been eating gluten for a

> while (3-6 months) for a " good " biopsy.

You have to be eating gluten.

Your histologist needs to be proficient at grading severity.

The sample needs to come from a patch that exhibits disease.

(Patchy atrophy was noted in 1957 and still many physicians ignore this

false negative possibility)

> The genetic blood work is

> the " platinum " standard--it will tell you if you have the gene for

> celiac or not.

The first standard and the most important standard is that removal of wheat

gluten reduces the symptoms and improves the quality of life for the

affected individual. There are many paths to get there.

If I had a test

that could identify abnormal immunology in the gut on the first day, I would

on that day stop eating gluten.

There is no such test, in very young children if you are lucky you can get a

diagnoses within 4 months.

In adults, the studies to which I have referred show symptoms preceding

obvious disease by 5 or 10 years.

, and only DQ typing can predict whether removal of gluten would be

effective or ineffective, at these earlier points . Its like a flag to the

physician, if the patient has this DQ be aware that he/she may have a celiac

condition.

Although its most important use if for a sense of awareness in siblings, for

those who may carry the gene to know they are at increased risk.

> But, you can be gluten INTOLERANT and NOT have the gene. In that case,

> the bloodwork won't tell you.

Rarely. I have read these occurances are between 2 and 5% And when

transhaplotypes are considered less than 2%.

[Guest guest]

What is as a endoscopy? That isn't the same as a biopsy is it? My son had

a endoscopy and I have the report but I don't know how to read it.

Re: Biopsy for celiac

>

> Our genetic bloodwork was done by Promithius Labs in CA--where the GI

> sent the vial(s) (I can't remember if it was 1 or more at this

> point.)

>

> NO, you do NOT need to be eating gluten. The test was $440 for us.

> The rest was picked up by insurance. BIG " savings " over a

> biopsy...Gabby's endoscopy was over $2000 for our part!

I had myself DQ typed as a result of a control study. Did not event think to

consider celiac disease until I did a search on DQ2 and DQ8 as part of that

study. Later I was casually reading the top 15 papers and these papers at it

was like reading off symptoms I had for many years. " What is the celiac

[stuff]? "

Most honest physicians will tell you that the biopsy, by itself, gives

inconsistent results. DQ is another guide and antibodies are another guide.

If you have the positive biopsy then you know, but if you don't other signs

may cause you to suspect and change.

Between 1952 and 1956 when the cause of CD was known and the biopsy was

rare, the diagnosis for CD was to remove gluten for a month, observe,

challenge and observe (If the patients reaction was not severe enough). Many

patients after going gluten free for a month simply chose not to be

rechallenged.

If DQ typing leads you to go GF and this resolves most of the problem, it

is therefore adequate. In 1950s the cases that were being seen were the most

severe, life threatening situations, one expects positive biopsies.

The problem with waiting on a positive biopsy is that much damage is done,

particularly in late onset cases, by the time the biopsy is positive. In the

Finnish study

2 of their 28 died, based on what they were talking about

1 of lymphoma. The damage to the stem cells in the GI tract has been

examined, it is DNA damage and is akin to aging 2 or 3 years the GI tract

for every year the lymphocytes are elevated. This is were the cancer risk

comes from.

> We were told the endoscopy/biopsy was the " gold standard " and shows

> correct positive results/negative results for " most people " .

Gold is afterall just another metal.

> Uh,

> Gabby's not one of them. You HAVE to have been eating gluten for a

> while (3-6 months) for a " good " biopsy.

You have to be eating gluten.

Your histologist needs to be proficient at grading severity.

The sample needs to come from a patch that exhibits disease.

(Patchy atrophy was noted in 1957 and still many physicians ignore this

false negative possibility)

> The genetic blood work is

> the " platinum " standard--it will tell you if you have the gene for

> celiac or not.

The first standard and the most important standard is that removal of wheat

gluten reduces the symptoms and improves the quality of life for the

affected individual. There are many paths to get there.

If I had a test

that could identify abnormal immunology in the gut on the first day, I would

on that day stop eating gluten.

There is no such test, in very young children if you are lucky you can get a

diagnoses within 4 months.

In adults, the studies to which I have referred show symptoms preceding

obvious disease by 5 or 10 years.

, and only DQ typing can predict whether removal of gluten would be

effective or ineffective, at these earlier points . Its like a flag to the

physician, if the patient has this DQ be aware that he/she may have a celiac

condition.

Although its most important use if for a sense of awareness in siblings, for

those who may carry the gene to know they are at increased risk.

> But, you can be gluten INTOLERANT and NOT have the gene. In that case,

> the bloodwork won't tell you.

Rarely. I have read these occurances are between 2 and 5% And when

transhaplotypes are considered less than 2%.

[Guest guest]

One thing to remember about the gene test is that is

only elevates your risk of having celiac it doesn't

confirm or rule out celiac. Most Celiacs have DQ2 or

8 but not all - there are about 2% who don't have

either. And there are a lot of people with DQ2 or 8

that don't appear to have CD.

Also of note is that one lab (Specialty Labs I think)

only classes the DQ2 variant where a1=0501,b1=0201.

If you have a1=0201,b1=0201 which is also DQ2 then you

would test negative if you do the workup for CD gene.

Which is not what you get from say the Mayo Lab. At

least that's what I get from their website and

somewhat confirmed by my son (Mayo, he's DQ2=0201,

0201 an DQ8 both) and mine through Lab Corps who sent

off to Specialty Lab and they just sent back I'm

negative for both DQ2 and DQ8. Since I'm his

biological mother I'm thinking that's how they classed

mine negative (it also seems that's what it says on

their website.) I personally think Specialty Labs is

wrong but I'm not a CD geneticist and although I've

read studies that state just DQ2 without qualifying

which variant I can't get enough data to see...nor

would I have enough clout to change it.

Anyway I jsut thought I'd mention it for those that

might be lab tested.

(Entero just checks for the b1 component of the HLA DQ

marker.)

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[Guest guest]

--- Gibert nlgibert@...> wrote:

> What is the DQ information below? I don't

> understand what DQ2 and DQ8 mean.

There are two human genetic markers that are closely

associated with Celiac Disease. Many people have

these markers that don't have Celiacs tho..BUT about

95% of Celiacs do have one of these genes. These

genes are called HLA DQ2 and HLA DQ8. So what does

this mean?

It means that IF you are having Celiac type problems

and you DON'T have one of these two genetic markers

that the probability of it being " classic " Celiac is

probably less than 5%. If you are having Celiac type

problems and you DO have one of these two genetic

markers it still means you may or may not have Celiacs

but your probability is higher.

So it basically can " almost rule out " Celiacs and

that's about it.

Where it does come in handy also is if you have a

biopsy proven " classic " Celiac that has a child. You

can check to see which markers you child has inherited

and monitor them for signs of Celiac and you have a

better chance of getting them monitored also. (Also

is good for other family members). If the child

doesn't happen to have one of the markers you can

" relax " your vigilance for Celiacs (ymmv).

Of course there are other markers which " supposedly "

indicate association with glucose intolerance too -

not sure if there are many studies on these tho.

Entero Labs has info on this.

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