Re: Question about Results

[Guest guest]

>

> Both of you have the DQ2 marker. Either or both of you could have

passed it

> on to your son. Neither of you " gave him CD " , regardless of whether

you have

> it or not.

I'm glad that you brought this up because recently I have noticed

several people expressing concern that they " gave " their child CD,

and it makes me sad- it's a genetic marker, not a virus... No one

person is to blame, and it's actually much better to find out that

you have it not only for yourself but for other family members as

well. There are still many people who have it and just don't know

about it, which is the worst possible situation. My family has both

Irish and Alaskan native ancestry, which i have heard are especially

prone to Celiac- but I'm proud of my heritage!

> As to beer - you could drink it even if the biopsy was positive.

But, it

> would cause elevated antibodies and probably damage - and those

antibodies

> (TTG) alone are what is implicated in non-hodgkins lympoma (not the

damage

> seen on a biopsy); these plus the anti-gliadin antibodies are also

the

> culprits behind a number of other types of damage CD can cause (some

> permanent, like type I diabetes, others less so).

This worries me a little because I fear that newly diagnosed folks

might take this as saying it is ok to drink beer- beer contains

gluten and will damage your intestines, whether you can tell or not.

I've known some non compliant celiacs who " couldn't " give up beer and

just " put up " with the side effects- very bad for your health, both

in the short term and the long term. Just drink a nice cider or wine!

Or, hunt down one of those weird GF beers from Canada or New York

[Guest guest]

Thank you so much for the thorough response. I just want to clarify

a few things. I have come to realize that the ttg is an indicator of

something wrong... whereas a few days ago before I was educated more

about this disease I made some assumptions that maybe I could have

had a false positive. And you know what they say about making

assumptions haha.

My dh does not want our ds to have any more problems.. although my

comment about him might have indicated that... its just that our

little guy has so many problems that he was almost in denial... this

may sound completely strange.. but when you have a child with a major

disability which has.. you almost feel like he won't get any

more problems because how could there be more? Especially ones

basically unrelated. So.. I think since our little guy really didn't

seem to have true symptoms (which again, we now realize he did and

does have) it's like you are hoping that the drs. are wrong. Anyway,

just wanted to explain that since maybe I might have misrepresented

him... he is very supportive of it all and is eating gf alot (DH that

is>)

Your email was so incredibly informative... about the symptoms of

diarrhea not being the biggest one, and that his comment about

celiacky.. that makes sense that the GI--- can't comment in detail

because if the ttg comes out negative and he still has damage in the

intestine it could be something else. I didn't even know that there

could be other reasons why there is villi blunting.

Also.... I am concerned that my ttg was probably lower than it would

have been since I have been making all of the meals gf.. though to be

fair, lunch and breakfast for me have been gf.

OK... now that everyone here probably thinks I have a major drinking

problem especially beer... which btw I was just commenting on because

I am not a big bread/dessert eater and I like an occassional beer.

I do plan on adhering to the gf diet as soon as the scope is done

meaning NO Beer. I will be having a few before scope just to make

sure that I have plenty of gluten in me. And I do like wine and

woodchuck so I am not completely bummed. Just those hot summer

days... well not sure a glass of merlot will do it for me.. !

Also.. thank you for reminding me that I didn't " give " my guy CD. I

guess I was just feeling a little bad that I was the one that ended

up testing positive. Since we have never figured out why he has his

other issues about lots of genetic testing etc.. I guess I was just

feeling a little guilty which was wrong.

You guys have been so incredibly helpful.. I am feeling so lucky to

have found out about you and also lucky that we fell into this

diagnosis,

Sally

> > Also, when you mentioned that 25% of people with Europeans decent

> > have the gene and don't develop cd... does that mean that 75% who

> > have the gene develop it?

>

> 30% of those in the US have one of the two major CD genes. Only

roughly 1 in

> 30 of those people get CD (making up nearly, but not all, of the 1

in 133

> cases of CD).

>

> > My dh is having such a hard time with all

> > of this... he actually thinks that my son doesn't have it even

though

> > he had a high ttg and biopsed which indicated cd.

>

> That's pretty much 100% proof - even a super high TTG (over 100

when 20 is

> positive) is considered diagnostic in kids (although most parents

still have

> the biopsy). Perhaps he is wishing for something more serious to

be causing

> the damage (such as cystic fibrosis? or colitis requiring removal

of a part

> of the intestines?) -- the damage is visible and has a cause, CD is

the

> " best " of the possible diagnoses, since it is treated only with

diet and

> when treated has no long term consequences or reduction in life

expectancy.

>

> > Our son has many

> > health issues (born with a neuronal migration disorder.. his brain

> > didn't " form " the right way) and so I guess he just doesn't get

that

> > if your symptoms aren't stomach pain and diarrhea you could still

> > have it.

>

> According to both recently published pediatric guidelines and the

NIH

> concensus report, the majority of people with CD do NOT have

diarrhea or

> stomach pain. For adults, the most common symptom is iron deficient

anemia

> (although I suspect osteoporosis isn't far behind, since close to

10% with

> this are also found to have CD).

>

> > It didn't help that our ped gi said... well the biopsy

> > looks " celiacky " to me. ??? It didn't sound so definitive but

then

> > he said he had it. Like we were supposed to know what to look

for in

> > the scope picture.

>

> Ask for a copy of the actual lab result. Just keep in mind that

these will

> NEVER say " diagnosis is " . Instead, it will say " suggestive of " -

they don't

> see the patient and don't make diagnoses (for legal reasons); plus

the tests

> have to be combined for a diagnosis - you could have the same

damage and no

> anti-gliadin antibodies at all, which would mean there was another

cause

> (casein and soy are often cited as the two other primary causes of

villi

> blunting, but are not the only ones).

>

> ---

> [This E-mail scanned for viruses by Declude Virus]

>

[Guest guest]

Thank you so much for the thorough response. I just want to clarify

a few things. I have come to realize that the ttg is an indicator of

something wrong... whereas a few days ago before I was educated more

about this disease I made some assumptions that maybe I could have

had a false positive. And you know what they say about making

assumptions haha.

My dh does not want our ds to have any more problems.. although my

comment about him might have indicated that... its just that our

little guy has so many problems that he was almost in denial... this

may sound completely strange.. but when you have a child with a major

disability which has.. you almost feel like he won't get any

more problems because how could there be more? Especially ones

basically unrelated. So.. I think since our little guy really didn't

seem to have true symptoms (which again, we now realize he did and

does have) it's like you are hoping that the drs. are wrong. Anyway,

just wanted to explain that since maybe I might have misrepresented

him... he is very supportive of it all and is eating gf alot (DH that

is>)

Your email was so incredibly informative... about the symptoms of

diarrhea not being the biggest one, and that his comment about

celiacky.. that makes sense that the GI--- can't comment in detail

because if the ttg comes out negative and he still has damage in the

intestine it could be something else. I didn't even know that there

could be other reasons why there is villi blunting.

Also.... I am concerned that my ttg was probably lower than it would

have been since I have been making all of the meals gf.. though to be

fair, lunch and breakfast for me have been gf.

OK... now that everyone here probably thinks I have a major drinking

problem especially beer... which btw I was just commenting on because

I am not a big bread/dessert eater and I like an occassional beer.

I do plan on adhering to the gf diet as soon as the scope is done

meaning NO Beer. I will be having a few before scope just to make

sure that I have plenty of gluten in me. And I do like wine and

woodchuck so I am not completely bummed. Just those hot summer

days... well not sure a glass of merlot will do it for me.. !

Also.. thank you for reminding me that I didn't " give " my guy CD. I

guess I was just feeling a little bad that I was the one that ended

up testing positive. Since we have never figured out why he has his

other issues about lots of genetic testing etc.. I guess I was just

feeling a little guilty which was wrong.

You guys have been so incredibly helpful.. I am feeling so lucky to

have found out about you and also lucky that we fell into this

diagnosis,

Sally

> > Also, when you mentioned that 25% of people with Europeans decent

> > have the gene and don't develop cd... does that mean that 75% who

> > have the gene develop it?

>

> 30% of those in the US have one of the two major CD genes. Only

roughly 1 in

> 30 of those people get CD (making up nearly, but not all, of the 1

in 133

> cases of CD).

>

> > My dh is having such a hard time with all

> > of this... he actually thinks that my son doesn't have it even

though

> > he had a high ttg and biopsed which indicated cd.

>

> That's pretty much 100% proof - even a super high TTG (over 100

when 20 is

> positive) is considered diagnostic in kids (although most parents

still have

> the biopsy). Perhaps he is wishing for something more serious to

be causing

> the damage (such as cystic fibrosis? or colitis requiring removal

of a part

> of the intestines?) -- the damage is visible and has a cause, CD is

the

> " best " of the possible diagnoses, since it is treated only with

diet and

> when treated has no long term consequences or reduction in life

expectancy.

>

> > Our son has many

> > health issues (born with a neuronal migration disorder.. his brain

> > didn't " form " the right way) and so I guess he just doesn't get

that

> > if your symptoms aren't stomach pain and diarrhea you could still

> > have it.

>

> According to both recently published pediatric guidelines and the

NIH

> concensus report, the majority of people with CD do NOT have

diarrhea or

> stomach pain. For adults, the most common symptom is iron deficient

anemia

> (although I suspect osteoporosis isn't far behind, since close to

10% with

> this are also found to have CD).

>

> > It didn't help that our ped gi said... well the biopsy

> > looks " celiacky " to me. ??? It didn't sound so definitive but

then

> > he said he had it. Like we were supposed to know what to look

for in

> > the scope picture.

>

> Ask for a copy of the actual lab result. Just keep in mind that

these will

> NEVER say " diagnosis is " . Instead, it will say " suggestive of " -

they don't

> see the patient and don't make diagnoses (for legal reasons); plus

the tests

> have to be combined for a diagnosis - you could have the same

damage and no

> anti-gliadin antibodies at all, which would mean there was another

cause

> (casein and soy are often cited as the two other primary causes of

villi

> blunting, but are not the only ones).

>

> ---

> [This E-mail scanned for viruses by Declude Virus]

>