Re: U.S. considering lowering threshold for diagnosis of celiac disease

[Guest guest]

This all gets so confusing. My sons test results indicated that he is gluten sensitive, and the doctor has said that while officially he qualifies for a biopsy, there really isn't a need. For the most part, I agree with this! The diet is really helping him. But what about when he's 14, not 4? When he says "So I'm gluten intolerant, big whoop!" In that case, a diagnosis of a disease is something I can toss at him. I guess what it comes down to, is that I don't want to torture him with unneccesary tests after being successfully gluten free for 2 months. But at the same time, it may be better to know. I don't want to lie to him and say "You have Celiac Disease" without a test confirming it. But, based on this new information, would his lack of loose stools, sleeping less, and calm behavior (not to mention the skin clearing up for the first time in his life!) be evidence enough?!

Long rant short, I'm including his test results. Please tell me what you think! I know ya'll aren't doctors, but I'd sure like some input!

Thanks,

Becki in windy FL

TTG IgG 3 (normal is less than 20)

TTG IgA 2 (normal is less than 20)

AGA IgG 54 (normal is less than 24, more than 30 is a strong positive)

Info in parenthesis is from the doctor on his lab sheet

U.S. considering lowering threshold for diagnosis of celiac disease

The U.S. is considering lowering the threshold for diagnosis of celiac disease:

"[W]hat is required is a new definition of a gold standard for the diagnosis of CD" [p.4]

http://www.ahrq.gov/clinic/epcsums/celiacsum.htm

(This is the site for the Agency for Healthcare Research and Quality of the U.S. Department of Health and Human Services.)

They are admitting that the strict cut-off requiring villous atrophy for a diagnosis lacks sensitivity [p.3] (sensitivity means finding all that may have the disease).

They are wondering whether some degree of villous atrophy is even necessary for a diagnosis of CD? [p.3]

They are suggesting pathology measures "such as quantification of gamma delta positive intraepithelial lymphocytes (gd+ IELs)" to allow for the use of lower grade cut-offs, while maintaining reasonable specificity" (correct identification of celiac disease). [p.3]

And they state ultimately a trial is required using "multiple diagnostic tests in an attempt to capture as many CD patients in a clinically relevant population as possible, along with a time dimension such as a response to a gluten-free diet or gluten challenge." [p.4]

And they are studying whether "celiac disease patients without symptoms or villous atrophy have the same risk of complications as those with villous atrophy." [p.2]

Jo Anne

[Guest guest]

This all gets so confusing. My sons test results indicated that he is gluten sensitive, and the doctor has said that while officially he qualifies for a biopsy, there really isn't a need. For the most part, I agree with this! The diet is really helping him. But what about when he's 14, not 4? When he says "So I'm gluten intolerant, big whoop!" In that case, a diagnosis of a disease is something I can toss at him. I guess what it comes down to, is that I don't want to torture him with unneccesary tests after being successfully gluten free for 2 months. But at the same time, it may be better to know. I don't want to lie to him and say "You have Celiac Disease" without a test confirming it. But, based on this new information, would his lack of loose stools, sleeping less, and calm behavior (not to mention the skin clearing up for the first time in his life!) be evidence enough?!

Long rant short, I'm including his test results. Please tell me what you think! I know ya'll aren't doctors, but I'd sure like some input!

Thanks,

Becki in windy FL

TTG IgG 3 (normal is less than 20)

TTG IgA 2 (normal is less than 20)

AGA IgG 54 (normal is less than 24, more than 30 is a strong positive)

Info in parenthesis is from the doctor on his lab sheet

U.S. considering lowering threshold for diagnosis of celiac disease

The U.S. is considering lowering the threshold for diagnosis of celiac disease:

"[W]hat is required is a new definition of a gold standard for the diagnosis of CD" [p.4]

http://www.ahrq.gov/clinic/epcsums/celiacsum.htm

(This is the site for the Agency for Healthcare Research and Quality of the U.S. Department of Health and Human Services.)

They are admitting that the strict cut-off requiring villous atrophy for a diagnosis lacks sensitivity [p.3] (sensitivity means finding all that may have the disease).

They are wondering whether some degree of villous atrophy is even necessary for a diagnosis of CD? [p.3]

They are suggesting pathology measures "such as quantification of gamma delta positive intraepithelial lymphocytes (gd+ IELs)" to allow for the use of lower grade cut-offs, while maintaining reasonable specificity" (correct identification of celiac disease). [p.3]

And they state ultimately a trial is required using "multiple diagnostic tests in an attempt to capture as many CD patients in a clinically relevant population as possible, along with a time dimension such as a response to a gluten-free diet or gluten challenge." [p.4]

And they are studying whether "celiac disease patients without symptoms or villous atrophy have the same risk of complications as those with villous atrophy." [p.2]

Jo Anne

[Guest guest]

Becky,

I am on the same page as you. I have a 6 year old with strong positive IgG, but

negative ttg

and IgA (supposedly not deficient). PediGI went a head and did a biopsy, that

didn't show

villi damage, but showed gastritis. We were told " let's give her zantac for 2

weeks and see

if it goes away, but it is definately not celiac. 1) how does a 6 yr old get

gastritis without

something causing it? 2) gastritis may explain the diarrhea, but not the

constipation

3)gastritis does not explain the undigested food we can see in her poop. She

doesn't have

any other risk factors for gastritis; not unless she is heading out at night and

spending her

allowance on cigarettes, booze, drugs and greasy food. Yes, I'm joking -- what

else can I

do? I have talked to 3 nurses, and her allergist, waiting on the pediatrician,

and they all say

it doesn't sound right to them, get a second opinion. The allergist said he

still felt strongly

that she was more than likely celiac (he did the food allergy tests and they

were all

negative) and to start her on the GF diet while we are waiting on the second

opinion. I am

thinking it will help her alot as I am seeing a pattern where if she goes for a

few days with

out a major source of gluten, she has been feeling better (or at least is not

complaining at

feeling bad).

These are my concerns:

1) like you said, years later, the actual diagnosis may be benificial--not just

for her and

knowing to watch out for certain things, but for relatives who may have

problems. I am in

my 40's and this has really had me questioning a lot of things about myself. I

have always

been told of a long history of food allergy, which looking back, could also be

easily

misdiagnosed celiac. This rarely occured to doctors to look for this 40 years

ago. I don't

like rye or barley and had stopped eating wheat due to allergy 7 months ago. In

the light

of possible celiac, I have started to add some rye back into my diet so I can be

tested. I

feel like crap; much like I did when I had the wheat in my diet. I have also

counted up to

10 various family members who also have similar symptoms: lots of gas, diarrhea,

some

failure to thrive, and we are all around 5 feet. I even remember them giving my

brother

growth hormone to get him to a whopping 5 " 6 " .

2) getting documentation may prevent having things be re-done years later. In my

own

case, I have only what my Mom and Dad have said. Mom has since died, and Dad

can't

remember that far back with a lot of clarity. When it seems to fit, and there

are lots of

associated problems to be watched for, I will feel better knowing.

3) in order to get support at school, they want a physician's prescription for

the special

diet. Granted I can teach her what not to eat, but when my child is under their

care for so

much time, I really would like to give them the things they need to best support

her.

4) in the real world, there are some doctors out there that will look at you

with a big

" hypochondriac??? " label unless there is something backing you up. Been there,

done that

with the food allergies (or is it celiac??). I had weird vague and varied

symptoms for many

years and was diagnosed with a variety of things, but nothing worked until

finally being

diagnosed with the food allergies and eliminating them from my diet. I do not

wish this on

my daughter. It is awful knowing there is something wrong with you and no one

believes

you and even worse looks at you like you are crazy.

Granted, every person and case is different. My daughter compensates fairly well

and it is

not at this time an iminent problem. She is borderline anemic, but again,

nothing iminent.

So a short time more for possibly having some definate answers has not been

unthinkable.

For me, I will try and put up with the gluten icky stuff for a while in order to

challenge and

be tested. Not only will it explain a lot for myself, but it should also give

more credibility

in their looking at my daughters case. I will do that for her if it will help.

Until then, I am

keeping a big notebook with every lab and report there is on her. Now that

testing is done,

we will probably start her on a GF diet (after running it past the pediatrician)

and note the

differences to take to the second consult.

I understand, I am frustrated too. While I didn't want her to actually have

celiac, I really

wish I could have some good answers. The allergist backing up what I already

believed in

my gut really helped.

By the way, what part of FL are you in? We're in Tampa and bracing for another

one of

those bastards. Haven't we had enough yet?

Good luck and stay safe,

Cheryl

> This all gets so confusing. My sons test results indicated that he is gluten

sensitive, and

the doctor has said that while officially he qualifies for a biopsy, there

really isn't a need.

For the most part, I agree with this! The diet is really helping him. But what

about when

he's 14, not 4? When he says " So I'm gluten intolerant, big whoop! " In that

case, a

diagnosis of a disease is something I can toss at him. I guess what it comes

down to, is

that I don't want to torture him with unneccesary tests after being successfully

gluten free

for 2 months. But at the same time, it may be better to know. I don't want to

lie to him

and say " You have Celiac Disease " without a test confirming it. But, based on

this new

information, would his lack of loose stools, sleeping less, and calm behavior

(not to

mention the skin clearing up for the first time in his life!) be evidence

enough?!

>

> Long rant short, I'm including his test results. Please tell me what you

think! I know

ya'll aren't doctors, but I'd sure like some input!

>

> Thanks,

> Becki in windy FL

>

> TTG IgG 3 (normal is less than 20)

> TTG IgA 2 (normal is less than 20)

> AGA IgG 54 (normal is less than 24, more than 30 is a strong positive)

>

> Info in parenthesis is from the doctor on his lab sheet

> U.S. considering lowering threshold for diagnosis of

celiac disease

>

>

> The U.S. is considering lowering the threshold for diagnosis of celiac

disease:

>

> " [W]hat is required is a new definition of a gold standard for the

diagnosis of CD "

[p.4]

> http://www.ahrq.gov/clinic/epcsums/celiacsum.htm

> (This is the site for the Agency for Healthcare Research and Quality of

the U.S.

Department of Health and Human Services.)

>

> They are admitting that the strict cut-off requiring villous atrophy for a

diagnosis

lacks sensitivity [p.3] (sensitivity means finding all that may have the

disease).

>

> They are wondering whether some degree of villous atrophy is even

necessary for a

diagnosis of CD? [p.3]

>

> They are suggesting pathology measures " such as quantification of gamma

delta

positive intraepithelial lymphocytes (gd+ IELs) " to allow for the use of lower

grade cut-

offs, while maintaining reasonable specificity " (correct identification of

celiac disease).

[p.3]

>

> And they state ultimately a trial is required using " multiple diagnostic

tests in an

attempt to capture as many CD patients in a clinically relevant population as

possible,

along with a time dimension such as a response to a gluten-free diet or gluten

challenge. "

[p.4]

>

>

> And they are studying whether " celiac disease patients without symptoms or

villous

atrophy have the same risk of complications as those with villous atrophy. "

[p.2]

>

> Jo Anne

>

>

[Guest guest]

Becky,

I am on the same page as you. I have a 6 year old with strong positive IgG, but

negative ttg

and IgA (supposedly not deficient). PediGI went a head and did a biopsy, that

didn't show

villi damage, but showed gastritis. We were told " let's give her zantac for 2

weeks and see

if it goes away, but it is definately not celiac. 1) how does a 6 yr old get

gastritis without

something causing it? 2) gastritis may explain the diarrhea, but not the

constipation

3)gastritis does not explain the undigested food we can see in her poop. She

doesn't have

any other risk factors for gastritis; not unless she is heading out at night and

spending her

allowance on cigarettes, booze, drugs and greasy food. Yes, I'm joking -- what

else can I

do? I have talked to 3 nurses, and her allergist, waiting on the pediatrician,

and they all say

it doesn't sound right to them, get a second opinion. The allergist said he

still felt strongly

that she was more than likely celiac (he did the food allergy tests and they

were all

negative) and to start her on the GF diet while we are waiting on the second

opinion. I am

thinking it will help her alot as I am seeing a pattern where if she goes for a

few days with

out a major source of gluten, she has been feeling better (or at least is not

complaining at

feeling bad).

These are my concerns:

1) like you said, years later, the actual diagnosis may be benificial--not just

for her and

knowing to watch out for certain things, but for relatives who may have

problems. I am in

my 40's and this has really had me questioning a lot of things about myself. I

have always

been told of a long history of food allergy, which looking back, could also be

easily

misdiagnosed celiac. This rarely occured to doctors to look for this 40 years

ago. I don't

like rye or barley and had stopped eating wheat due to allergy 7 months ago. In

the light

of possible celiac, I have started to add some rye back into my diet so I can be

tested. I

feel like crap; much like I did when I had the wheat in my diet. I have also

counted up to

10 various family members who also have similar symptoms: lots of gas, diarrhea,

some

failure to thrive, and we are all around 5 feet. I even remember them giving my

brother

growth hormone to get him to a whopping 5 " 6 " .

2) getting documentation may prevent having things be re-done years later. In my

own

case, I have only what my Mom and Dad have said. Mom has since died, and Dad

can't

remember that far back with a lot of clarity. When it seems to fit, and there

are lots of

associated problems to be watched for, I will feel better knowing.

3) in order to get support at school, they want a physician's prescription for

the special

diet. Granted I can teach her what not to eat, but when my child is under their

care for so

much time, I really would like to give them the things they need to best support

her.

4) in the real world, there are some doctors out there that will look at you

with a big

" hypochondriac??? " label unless there is something backing you up. Been there,

done that

with the food allergies (or is it celiac??). I had weird vague and varied

symptoms for many

years and was diagnosed with a variety of things, but nothing worked until

finally being

diagnosed with the food allergies and eliminating them from my diet. I do not

wish this on

my daughter. It is awful knowing there is something wrong with you and no one

believes

you and even worse looks at you like you are crazy.

Granted, every person and case is different. My daughter compensates fairly well

and it is

not at this time an iminent problem. She is borderline anemic, but again,

nothing iminent.

So a short time more for possibly having some definate answers has not been

unthinkable.

For me, I will try and put up with the gluten icky stuff for a while in order to

challenge and

be tested. Not only will it explain a lot for myself, but it should also give

more credibility

in their looking at my daughters case. I will do that for her if it will help.

Until then, I am

keeping a big notebook with every lab and report there is on her. Now that

testing is done,

we will probably start her on a GF diet (after running it past the pediatrician)

and note the

differences to take to the second consult.

I understand, I am frustrated too. While I didn't want her to actually have

celiac, I really

wish I could have some good answers. The allergist backing up what I already

believed in

my gut really helped.

By the way, what part of FL are you in? We're in Tampa and bracing for another

one of

those bastards. Haven't we had enough yet?

Good luck and stay safe,

Cheryl

> This all gets so confusing. My sons test results indicated that he is gluten

sensitive, and

the doctor has said that while officially he qualifies for a biopsy, there

really isn't a need.

For the most part, I agree with this! The diet is really helping him. But what

about when

he's 14, not 4? When he says " So I'm gluten intolerant, big whoop! " In that

case, a

diagnosis of a disease is something I can toss at him. I guess what it comes

down to, is

that I don't want to torture him with unneccesary tests after being successfully

gluten free

for 2 months. But at the same time, it may be better to know. I don't want to

lie to him

and say " You have Celiac Disease " without a test confirming it. But, based on

this new

information, would his lack of loose stools, sleeping less, and calm behavior

(not to

mention the skin clearing up for the first time in his life!) be evidence

enough?!

>

> Long rant short, I'm including his test results. Please tell me what you

think! I know

ya'll aren't doctors, but I'd sure like some input!

>

> Thanks,

> Becki in windy FL

>

> TTG IgG 3 (normal is less than 20)

> TTG IgA 2 (normal is less than 20)

> AGA IgG 54 (normal is less than 24, more than 30 is a strong positive)

>

> Info in parenthesis is from the doctor on his lab sheet

> U.S. considering lowering threshold for diagnosis of

celiac disease

>

>

> The U.S. is considering lowering the threshold for diagnosis of celiac

disease:

>

> " [W]hat is required is a new definition of a gold standard for the

diagnosis of CD "

[p.4]

> http://www.ahrq.gov/clinic/epcsums/celiacsum.htm

> (This is the site for the Agency for Healthcare Research and Quality of

the U.S.

Department of Health and Human Services.)

>

> They are admitting that the strict cut-off requiring villous atrophy for a

diagnosis

lacks sensitivity [p.3] (sensitivity means finding all that may have the

disease).

>

> They are wondering whether some degree of villous atrophy is even

necessary for a

diagnosis of CD? [p.3]

>

> They are suggesting pathology measures " such as quantification of gamma

delta

positive intraepithelial lymphocytes (gd+ IELs) " to allow for the use of lower

grade cut-

offs, while maintaining reasonable specificity " (correct identification of

celiac disease).

[p.3]

>

> And they state ultimately a trial is required using " multiple diagnostic

tests in an

attempt to capture as many CD patients in a clinically relevant population as

possible,

along with a time dimension such as a response to a gluten-free diet or gluten

challenge. "

[p.4]

>

>

> And they are studying whether " celiac disease patients without symptoms or

villous

atrophy have the same risk of complications as those with villous atrophy. "

[p.2]

>

> Jo Anne

>

>