Re: Question about Results

[Guest guest]

In your shoes, I would get scoped. A strong TTG really needs further

investigation. Silent celiac is just as dangerous as 'noisy' (ha ha)

celiac. As far as I've learned and read, there's no reason for TTG to

be elevated except in celiac. Gliadin can be elevated for many

reasons. But I've only heard of TTG being elevated in celiac.

As a matter of fact, TTG elevation was the ONLY 'proof' of my celiac.

Even my biopsy was negative. But gluten-free diet made me feel worlds

better AND made the TTG go back down to zero. And I do mean zero. I

don't mean " just below 20 " . I mean zero.

Alternately, if you are really loathe to scope, go GF and get the TTG

retested in a few months.

I don't know what I'd advise about your hubby, though.

But it's worth telling the families about. If they're feeling poorly

and their doctors haven't thought of celiac yet (it's usually not in

the top 10 reasons for feeling poorly), then it's worth mentioning so

the ones who are feeling poorly can ask their doctors.

>

> Hi everyone,

>

> My dh and I got our test results back. We both have the DQ2 marker.

> We got tested because our 6 1/2 was dx through biopsy with cd

> 12/30/05.

> My ttg was 30, considered a strong positive, less than 20 would have

> been negative. My son's ttg was 115. My Gliadin IGA was less than 20

> but my gliadin IGG was 24. DH's bloodwork all came back negative..

>

>

[Guest guest]

First, I am not a Dr., but this is the way I understand things...

If your ttg was elevated, you should have a scope done. Your ttg can be

elevated for things other than Celiac disease - such as Crohn's disease,

etc. They can do an antiendomysial antibody to get further confirmation, if

that is what you would like, before doing the scope. Antiendomysial

antibodies are more specific for Celiac disease, and can give further

confirmation.

As far as feeling OK, I did too. My scope (for reflux) came back for CD, so

the blood test was done, and it was positive. After going GF for a year, my

numbers are normal. I chose to go GF in order to avoid the complications

that go along with Celiac disease, such as other autoimmune diseases

(Crohn's, Rheumatoid Arthritis, Thyroid issues, Sjogrens, Graves disease,

and lymphoma - although they say that is rare, etc.) I unfortunately do

have Crohn's now.

The DQ2 marker is a very common gene, and I believe the thought is that

about 25% of people with European decent have the gene and don't develop CD.

Hope this info helps.

Suzie

Question about Results

Hi everyone,

My dh and I got our test results back. We both have the DQ2 marker.

We got tested because our 6 1/2 was dx through biopsy with cd

12/30/05.

My ttg was 30, considered a strong positive, less than 20 would have

been negative. My son's ttg was 115. My Gliadin IGA was less than 20

but my gliadin IGG was 24. DH's bloodwork all came back negative..

So... just trying to figure out what to do. I don't feel like I have

many symptoms, occasionally achy joint pain, constipated but nothing

that makes me feel like I can't function etc. I have been eating

much less gluten since ds was dx... so am wondering whether the ttg

level would have been higher.

I told my sister in law last night and she said... well why would you

do anything? You don't need to grow any more. DS has growth issues

that's why he was tested.

Should I get a biopsy? To confirm for sure? I read in one of the

posts that the only reason why you would have elevated #'s would be

cd or possiblity of lymphoma. I did have two scares with cancer

twice in my life, ovarian tumor at 19 and colon polyps at 36 both pre

cancerous.

If both parents are have DQ2... what is the likelihood of children

devloping cd?

If my husband has DQ2 but no symptoms, should we inform his family

(of which some have true cd symptoms) to get tested?

Any suggestions about all of this is so appreciated. It is so

confusing to me and now that I seem to have some positive results

it's even more confusing since I really don't feel that bad.

Thanks,

Sally

[Guest guest]

>

> First, I am not a Dr., but this is the way I understand things...

>

> If your ttg was elevated, you should have a scope done. Your ttg

can be

> elevated for things other than Celiac disease - such as Crohn's

disease,

> etc. They can do an antiendomysial antibody to get further

confirmation, if

> that is what you would like, before doing the scope. Antiendomysial

> antibodies are more specific for Celiac disease, and can give

further

> confirmation.

>

> As far as feeling OK, I did too. My scope (for reflux) came back

for CD, so

> the blood test was done, and it was positive. After going GF for a

year, my

> numbers are normal. I chose to go GF in order to avoid the

complications

> that go along with Celiac disease, such as other autoimmune diseases

> (Crohn's, Rheumatoid Arthritis, Thyroid issues, Sjogrens, Graves

disease,

> and lymphoma - although they say that is rare, etc.) I

unfortunately do

> have Crohn's now.

>

> The DQ2 marker is a very common gene, and I believe the thought is

that

> about 25% of people with European decent have the gene and don't

develop CD.

>

> Hope this info helps.

> Suzie

>

> *********************

Thanks.. I know you mentioned you didn't have symptoms... but after

going GF did you find that you felt better? I am wondering if I

actually do have symptoms but don't know it ( like fatigue, I am

thinking it might be related to not exercising enough, having 3

children 6 and under etc.)

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? 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. 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. 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.

Sally

[Guest guest]

>

> First, I am not a Dr., but this is the way I understand things...

>

> If your ttg was elevated, you should have a scope done. Your ttg

can be

> elevated for things other than Celiac disease - such as Crohn's

disease,

> etc. They can do an antiendomysial antibody to get further

confirmation, if

> that is what you would like, before doing the scope. Antiendomysial

> antibodies are more specific for Celiac disease, and can give

further

> confirmation.

>

> As far as feeling OK, I did too. My scope (for reflux) came back

for CD, so

> the blood test was done, and it was positive. After going GF for a

year, my

> numbers are normal. I chose to go GF in order to avoid the

complications

> that go along with Celiac disease, such as other autoimmune diseases

> (Crohn's, Rheumatoid Arthritis, Thyroid issues, Sjogrens, Graves

disease,

> and lymphoma - although they say that is rare, etc.) I

unfortunately do

> have Crohn's now.

>

> The DQ2 marker is a very common gene, and I believe the thought is

that

> about 25% of people with European decent have the gene and don't

develop CD.

>

> Hope this info helps.

> Suzie

>

> *********************

Thanks.. I know you mentioned you didn't have symptoms... but after

going GF did you find that you felt better? I am wondering if I

actually do have symptoms but don't know it ( like fatigue, I am

thinking it might be related to not exercising enough, having 3

children 6 and under etc.)

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? 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. 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. 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.

Sally

[Guest guest]

>

> First, I am not a Dr., but this is the way I understand things...

>

> If your ttg was elevated, you should have a scope done. Your ttg

can be

> elevated for things other than Celiac disease - such as Crohn's

disease,

> etc. They can do an antiendomysial antibody to get further

confirmation, if

> that is what you would like, before doing the scope. Antiendomysial

> antibodies are more specific for Celiac disease, and can give

further

> confirmation.

>

> As far as feeling OK, I did too. My scope (for reflux) came back

for CD, so

> the blood test was done, and it was positive. After going GF for a

year, my

> numbers are normal. I chose to go GF in order to avoid the

complications

> that go along with Celiac disease, such as other autoimmune diseases

> (Crohn's, Rheumatoid Arthritis, Thyroid issues, Sjogrens, Graves

disease,

> and lymphoma - although they say that is rare, etc.) I

unfortunately do

> have Crohn's now.

>

> The DQ2 marker is a very common gene, and I believe the thought is

that

> about 25% of people with European decent have the gene and don't

develop CD.

>

> Hope this info helps.

> Suzie

>

> *********************

Thanks.. I know you mentioned you didn't have symptoms... but after

going GF did you find that you felt better? I am wondering if I

actually do have symptoms but don't know it ( like fatigue, I am

thinking it might be related to not exercising enough, having 3

children 6 and under etc.)

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? 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. 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. 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.

Sally

[Guest guest]

Esther,

Forgive me for my ignorance. But... if the scope comes out fine.. I

thought that meant no cd. Because if I do the scope and it does come

back negative.. I wouldn't go gf because I don't have symptoms

right? Does this mean for sure that I gave my son cd?? I guess so

since it appears I have it and my dh was negative. Did you go GF

because you had symptoms? Is it common for the biopsy to come back

negative but still have a positive ttg? I am totally ok with going

GF if I have it.. but if the biopsy says I don't have it then I would

still be able to drink beer!! which I love to do.. the cakes/treats

etc.. that doesn't bother me because the gf ones are pretty good..

bread... well that seems to be a bit more problematic but I haven't

baked yet so I haven't given up hope but beer... I just love to have

one on a hot day!!

Sally-

-- In SillyYaks , " esther_p210 " wrote:

>

> In your shoes, I would get scoped. A strong TTG really needs further

> investigation. Silent celiac is just as dangerous as 'noisy' (ha ha)

> celiac. As far as I've learned and read, there's no reason for TTG

to

> be elevated except in celiac. Gliadin can be elevated for many

> reasons. But I've only heard of TTG being elevated in celiac.

>

> As a matter of fact, TTG elevation was the ONLY 'proof' of my

celiac.

> Even my biopsy was negative. But gluten-free diet made me feel

worlds

> better AND made the TTG go back down to zero. And I do mean zero. I

> don't mean " just below 20 " . I mean zero.

>

> Alternately, if you are really loathe to scope, go GF and get the

TTG

> retested in a few months.

>

> I don't know what I'd advise about your hubby, though.

>

> But it's worth telling the families about. If they're feeling poorly

> and their doctors haven't thought of celiac yet (it's usually not in

> the top 10 reasons for feeling poorly), then it's worth mentioning

so

> the ones who are feeling poorly can ask their doctors.

>

>

>

[Guest guest]

Esther,

Forgive me for my ignorance. But... if the scope comes out fine.. I

thought that meant no cd. Because if I do the scope and it does come

back negative.. I wouldn't go gf because I don't have symptoms

right? Does this mean for sure that I gave my son cd?? I guess so

since it appears I have it and my dh was negative. Did you go GF

because you had symptoms? Is it common for the biopsy to come back

negative but still have a positive ttg? I am totally ok with going

GF if I have it.. but if the biopsy says I don't have it then I would

still be able to drink beer!! which I love to do.. the cakes/treats

etc.. that doesn't bother me because the gf ones are pretty good..

bread... well that seems to be a bit more problematic but I haven't

baked yet so I haven't given up hope but beer... I just love to have

one on a hot day!!

Sally-

-- In SillyYaks , " esther_p210 " wrote:

>

> In your shoes, I would get scoped. A strong TTG really needs further

> investigation. Silent celiac is just as dangerous as 'noisy' (ha ha)

> celiac. As far as I've learned and read, there's no reason for TTG

to

> be elevated except in celiac. Gliadin can be elevated for many

> reasons. But I've only heard of TTG being elevated in celiac.

>

> As a matter of fact, TTG elevation was the ONLY 'proof' of my

celiac.

> Even my biopsy was negative. But gluten-free diet made me feel

worlds

> better AND made the TTG go back down to zero. And I do mean zero. I

> don't mean " just below 20 " . I mean zero.

>

> Alternately, if you are really loathe to scope, go GF and get the

TTG

> retested in a few months.

>

> I don't know what I'd advise about your hubby, though.

>

> But it's worth telling the families about. If they're feeling poorly

> and their doctors haven't thought of celiac yet (it's usually not in

> the top 10 reasons for feeling poorly), then it's worth mentioning

so

> the ones who are feeling poorly can ask their doctors.

>

>

>

[Guest guest]

Esther,

Forgive me for my ignorance. But... if the scope comes out fine.. I

thought that meant no cd. Because if I do the scope and it does come

back negative.. I wouldn't go gf because I don't have symptoms

right? Does this mean for sure that I gave my son cd?? I guess so

since it appears I have it and my dh was negative. Did you go GF

because you had symptoms? Is it common for the biopsy to come back

negative but still have a positive ttg? I am totally ok with going

GF if I have it.. but if the biopsy says I don't have it then I would

still be able to drink beer!! which I love to do.. the cakes/treats

etc.. that doesn't bother me because the gf ones are pretty good..

bread... well that seems to be a bit more problematic but I haven't

baked yet so I haven't given up hope but beer... I just love to have

one on a hot day!!

Sally-

-- In SillyYaks , " esther_p210 " wrote:

>

> In your shoes, I would get scoped. A strong TTG really needs further

> investigation. Silent celiac is just as dangerous as 'noisy' (ha ha)

> celiac. As far as I've learned and read, there's no reason for TTG

to

> be elevated except in celiac. Gliadin can be elevated for many

> reasons. But I've only heard of TTG being elevated in celiac.

>

> As a matter of fact, TTG elevation was the ONLY 'proof' of my

celiac.

> Even my biopsy was negative. But gluten-free diet made me feel

worlds

> better AND made the TTG go back down to zero. And I do mean zero. I

> don't mean " just below 20 " . I mean zero.

>

> Alternately, if you are really loathe to scope, go GF and get the

TTG

> retested in a few months.

>

> I don't know what I'd advise about your hubby, though.

>

> But it's worth telling the families about. If they're feeling poorly

> and their doctors haven't thought of celiac yet (it's usually not in

> the top 10 reasons for feeling poorly), then it's worth mentioning

so

> the ones who are feeling poorly can ask their doctors.

>

>

>

[Guest guest]

Bread and beer were huge adjustments for me. Both were common in my diet

I tried the GF beers and thought they were all gross. Now I drink mostly

mixed drinks, but when I have my " bottle urge " I drink Woodchuck ciders. I

didn't find any GF bread alternatives that I liked, so I've stopped trying

them for awhile. Maybe somewhere down the road I'll try one I like

Anyway, I'm living proof that the " two hardest things " to give up you can

live without

Re: Question about Results

> Esther,

>

> Forgive me for my ignorance. But... if the scope comes out fine.. I

> thought that meant no cd. Because if I do the scope and it does come

> back negative.. I wouldn't go gf because I don't have symptoms

> right? Does this mean for sure that I gave my son cd?? I guess so

> since it appears I have it and my dh was negative. Did you go GF

> because you had symptoms? Is it common for the biopsy to come back

> negative but still have a positive ttg? I am totally ok with going

> GF if I have it.. but if the biopsy says I don't have it then I would

> still be able to drink beer!! which I love to do.. the cakes/treats

> etc.. that doesn't bother me because the gf ones are pretty good..

> bread... well that seems to be a bit more problematic but I haven't

> baked yet so I haven't given up hope but beer... I just love to have

> one on a hot day!!

>

> Sally-

>

> -- In SillyYaks , " esther_p210 " wrote:

>>

>> In your shoes, I would get scoped. A strong TTG really needs further

>> investigation. Silent celiac is just as dangerous as 'noisy' (ha ha)

>> celiac. As far as I've learned and read, there's no reason for TTG

> to

>> be elevated except in celiac. Gliadin can be elevated for many

>> reasons. But I've only heard of TTG being elevated in celiac.

>>

>> As a matter of fact, TTG elevation was the ONLY 'proof' of my

> celiac.

>> Even my biopsy was negative. But gluten-free diet made me feel

> worlds

>> better AND made the TTG go back down to zero. And I do mean zero. I

>> don't mean " just below 20 " . I mean zero.

>>

>> Alternately, if you are really loathe to scope, go GF and get the

> TTG

>> retested in a few months.

>>

>> I don't know what I'd advise about your hubby, though.

>>

>> But it's worth telling the families about. If they're feeling poorly

>> and their doctors haven't thought of celiac yet (it's usually not in

>> the top 10 reasons for feeling poorly), then it's worth mentioning

> so

>> the ones who are feeling poorly can ask their doctors.

>>

>>

>>

>

>

>

>

>

>

>

[Guest guest]

Bread and beer were huge adjustments for me. Both were common in my diet

I tried the GF beers and thought they were all gross. Now I drink mostly

mixed drinks, but when I have my " bottle urge " I drink Woodchuck ciders. I

didn't find any GF bread alternatives that I liked, so I've stopped trying

them for awhile. Maybe somewhere down the road I'll try one I like

Anyway, I'm living proof that the " two hardest things " to give up you can

live without

Re: Question about Results

> Esther,

>

> Forgive me for my ignorance. But... if the scope comes out fine.. I

> thought that meant no cd. Because if I do the scope and it does come

> back negative.. I wouldn't go gf because I don't have symptoms

> right? Does this mean for sure that I gave my son cd?? I guess so

> since it appears I have it and my dh was negative. Did you go GF

> because you had symptoms? Is it common for the biopsy to come back

> negative but still have a positive ttg? I am totally ok with going

> GF if I have it.. but if the biopsy says I don't have it then I would

> still be able to drink beer!! which I love to do.. the cakes/treats

> etc.. that doesn't bother me because the gf ones are pretty good..

> bread... well that seems to be a bit more problematic but I haven't

> baked yet so I haven't given up hope but beer... I just love to have

> one on a hot day!!

>

> Sally-

>

> -- In SillyYaks , " esther_p210 " wrote:

>>

>> In your shoes, I would get scoped. A strong TTG really needs further

>> investigation. Silent celiac is just as dangerous as 'noisy' (ha ha)

>> celiac. As far as I've learned and read, there's no reason for TTG

> to

>> be elevated except in celiac. Gliadin can be elevated for many

>> reasons. But I've only heard of TTG being elevated in celiac.

>>

>> As a matter of fact, TTG elevation was the ONLY 'proof' of my

> celiac.

>> Even my biopsy was negative. But gluten-free diet made me feel

> worlds

>> better AND made the TTG go back down to zero. And I do mean zero. I

>> don't mean " just below 20 " . I mean zero.

>>

>> Alternately, if you are really loathe to scope, go GF and get the

> TTG

>> retested in a few months.

>>

>> I don't know what I'd advise about your hubby, though.

>>

>> But it's worth telling the families about. If they're feeling poorly

>> and their doctors haven't thought of celiac yet (it's usually not in

>> the top 10 reasons for feeling poorly), then it's worth mentioning

> so

>> the ones who are feeling poorly can ask their doctors.

>>

>>

>>

>

>

>

>

>

>

>

[Guest guest]

Bread and beer were huge adjustments for me. Both were common in my diet

I tried the GF beers and thought they were all gross. Now I drink mostly

mixed drinks, but when I have my " bottle urge " I drink Woodchuck ciders. I

didn't find any GF bread alternatives that I liked, so I've stopped trying

them for awhile. Maybe somewhere down the road I'll try one I like

Anyway, I'm living proof that the " two hardest things " to give up you can

live without

Re: Question about Results

> Esther,

>

> Forgive me for my ignorance. But... if the scope comes out fine.. I

> thought that meant no cd. Because if I do the scope and it does come

> back negative.. I wouldn't go gf because I don't have symptoms

> right? Does this mean for sure that I gave my son cd?? I guess so

> since it appears I have it and my dh was negative. Did you go GF

> because you had symptoms? Is it common for the biopsy to come back

> negative but still have a positive ttg? I am totally ok with going

> GF if I have it.. but if the biopsy says I don't have it then I would

> still be able to drink beer!! which I love to do.. the cakes/treats

> etc.. that doesn't bother me because the gf ones are pretty good..

> bread... well that seems to be a bit more problematic but I haven't

> baked yet so I haven't given up hope but beer... I just love to have

> one on a hot day!!

>

> Sally-

>

> -- In SillyYaks , " esther_p210 " wrote:

>>

>> In your shoes, I would get scoped. A strong TTG really needs further

>> investigation. Silent celiac is just as dangerous as 'noisy' (ha ha)

>> celiac. As far as I've learned and read, there's no reason for TTG

> to

>> be elevated except in celiac. Gliadin can be elevated for many

>> reasons. But I've only heard of TTG being elevated in celiac.

>>

>> As a matter of fact, TTG elevation was the ONLY 'proof' of my

> celiac.

>> Even my biopsy was negative. But gluten-free diet made me feel

> worlds

>> better AND made the TTG go back down to zero. And I do mean zero. I

>> don't mean " just below 20 " . I mean zero.

>>

>> Alternately, if you are really loathe to scope, go GF and get the

> TTG

>> retested in a few months.

>>

>> I don't know what I'd advise about your hubby, though.

>>

>> But it's worth telling the families about. If they're feeling poorly

>> and their doctors haven't thought of celiac yet (it's usually not in

>> the top 10 reasons for feeling poorly), then it's worth mentioning

> so

>> the ones who are feeling poorly can ask their doctors.

>>

>>

>>

>

>

>

>

>

>

>

[Guest guest]

ok.. I already feel better. Did not even know about the cider being

gf. I guess I didn't check any of the alcohol stuff out because my

ds is only 6 1/2. I love woodchuck. Thank you for cheering me up!

Sally

>

> Bread and beer were huge adjustments for me. Both were common in

my diet

> I tried the GF beers and thought they were all gross. Now I drink

mostly

> mixed drinks, but when I have my " bottle urge " I drink Woodchuck

ciders. I

> didn't find any GF bread alternatives that I liked, so I've stopped

trying

> them for awhile. Maybe somewhere down the road I'll try one I

like

> Anyway, I'm living proof that the " two hardest things " to give up

you can

> live without

>

>

>

[Guest guest]

ok.. I already feel better. Did not even know about the cider being

gf. I guess I didn't check any of the alcohol stuff out because my

ds is only 6 1/2. I love woodchuck. Thank you for cheering me up!

Sally

>

> Bread and beer were huge adjustments for me. Both were common in

my diet

> I tried the GF beers and thought they were all gross. Now I drink

mostly

> mixed drinks, but when I have my " bottle urge " I drink Woodchuck

ciders. I

> didn't find any GF bread alternatives that I liked, so I've stopped

trying

> them for awhile. Maybe somewhere down the road I'll try one I

like

> Anyway, I'm living proof that the " two hardest things " to give up

you can

> live without

>

>

>

[Guest guest]

My story is a little complicated.

It all started 20 years ago with mystery, painful, sudden, explosive,

desperate " D " after some meals. I had test after test after test after

test for the last 20 years.

I got worse and worse.

Last summer I got a rash and got a LOT sicker. I got " D " up to 10x/day

and I started to bleed from my bottom.

So, doc ordered colonoscopy and celiac blood test. The celiac blood

tests were " just for yucks " . But lo, the transglutaminase came back

high. (Nothing else did. Only TTG.) So, the doc ordered a scope along

with the colonoscopy.

The scope revealed no signs of celiac. The colonoscopy revealed a rare

form of colitis. But, due to the TTG and how sick I was, we decided I

should go GF any way. I went GF at the beginning of October and WITHIN

DAYS I was feeling better. WITHIN DAYS the bloody D was GONE. G O N E

GONE, I tell you. It was a miracle. I was a whole new woman.

Meanwhile, my biopsy was sent out to a different hospital for a second

opinion because it all seemed so contradictory. The 2nd hospital also

said " no signs of celiac " .

After 3 months we did a second test of my blood, and a small-bowel

follow-through. The SBFT was to see if the celiac was lower down in

the small intestine, in a spot missed by the biopsy. This can happen

in patchy celiac or celiac low down in the small intestine. The SBFT

revealed no celiac signs in the part that could be seen. But the

terminal ileum couldn't be seen no matter how hard the radiologist

tried to get it to budge. (We tried all different positions and

several mechanisms for pushing on the terminal ileum to get it to

wiggle. No luck. When I reached my maximum radiation dose, we gave up.)

So, biopsy said " no signs of celiac " and SBFT said " no signs of

celiac " but TTG went from high to zero AND GF made the D stop.

So.... Instead of looking at is " I don't have celiac because the

biopsy and SBFT say 'no celiac' " , I'm looking at it as " I am THE

LUCKIEST CELIAC IN THE WHOLE HISTORY OF HUMANITY!! I GOT SICK ENOUGH

FOR DIAGNOSIS BEFORE SEVERE DAMAGE WAS DONE! HOOOOOOORAY! I MUST HAVE

THE SMARTEST DOCTORS IN THE UNIVERSE. " Sure, it took 20 years of

misery to finally figure this out. But the damage was not done.

I'm sure that if we had diddled around with more tests and said

" biopsy is negative so let's try removing your gall bladder " , then by

the time we figured out celiac on a 2nd try that I would have

unequivocal damage. But I'm not willing to wait that long. I've

suffered enough and the GF diet is working MIRACLES for me. No D. No

pain. No bleeding from places where one should NEVER see blood. AND,

my transglutaminase has gone back down to zero.

I am dancing in the streets for being THE LUCKIEST CELIAC IN THE

UNIVERSE.

I don't care that the biopsy was negative.

At first I was bummed that the biopsy and SBFT were negative. I was

totally confused. And believe me, I did NOT want to forsake Tim

Horton's donuts!!! Nor Hostess Cupcakes, nor Little Debbie snack

cakes, nor cheesecake at a restaurant, nor marinated steaks at Bugaboo

Creek nor Portabella Mushroom soup nor any of a gazillion other things

I miss. (I don't miss beer as I gave that up 22+ years ago.) But once

I saw the miracle of GF in my own life, I was pretty sure of the

diagnosis. And when I saw that transglutaminase went to zero, there

was no longer any lingering question in my mind.

I'm the luckiest celiac in the whole history of humanity.

May you be as well. We can be tied for First Place in the Lucky Race.

Esther in RI

>

> Esther,

>

> Forgive me for my ignorance. But... if the scope comes out fine.. I

> thought that meant no cd. Because if I do the scope and it does come

> back negative.. I wouldn't go gf because I don't have symptoms

> right?

[Guest guest]

My story is a little complicated.

It all started 20 years ago with mystery, painful, sudden, explosive,

desperate " D " after some meals. I had test after test after test after

test for the last 20 years.

I got worse and worse.

Last summer I got a rash and got a LOT sicker. I got " D " up to 10x/day

and I started to bleed from my bottom.

So, doc ordered colonoscopy and celiac blood test. The celiac blood

tests were " just for yucks " . But lo, the transglutaminase came back

high. (Nothing else did. Only TTG.) So, the doc ordered a scope along

with the colonoscopy.

The scope revealed no signs of celiac. The colonoscopy revealed a rare

form of colitis. But, due to the TTG and how sick I was, we decided I

should go GF any way. I went GF at the beginning of October and WITHIN

DAYS I was feeling better. WITHIN DAYS the bloody D was GONE. G O N E

GONE, I tell you. It was a miracle. I was a whole new woman.

Meanwhile, my biopsy was sent out to a different hospital for a second

opinion because it all seemed so contradictory. The 2nd hospital also

said " no signs of celiac " .

After 3 months we did a second test of my blood, and a small-bowel

follow-through. The SBFT was to see if the celiac was lower down in

the small intestine, in a spot missed by the biopsy. This can happen

in patchy celiac or celiac low down in the small intestine. The SBFT

revealed no celiac signs in the part that could be seen. But the

terminal ileum couldn't be seen no matter how hard the radiologist

tried to get it to budge. (We tried all different positions and

several mechanisms for pushing on the terminal ileum to get it to

wiggle. No luck. When I reached my maximum radiation dose, we gave up.)

So, biopsy said " no signs of celiac " and SBFT said " no signs of

celiac " but TTG went from high to zero AND GF made the D stop.

So.... Instead of looking at is " I don't have celiac because the

biopsy and SBFT say 'no celiac' " , I'm looking at it as " I am THE

LUCKIEST CELIAC IN THE WHOLE HISTORY OF HUMANITY!! I GOT SICK ENOUGH

FOR DIAGNOSIS BEFORE SEVERE DAMAGE WAS DONE! HOOOOOOORAY! I MUST HAVE

THE SMARTEST DOCTORS IN THE UNIVERSE. " Sure, it took 20 years of

misery to finally figure this out. But the damage was not done.

I'm sure that if we had diddled around with more tests and said

" biopsy is negative so let's try removing your gall bladder " , then by

the time we figured out celiac on a 2nd try that I would have

unequivocal damage. But I'm not willing to wait that long. I've

suffered enough and the GF diet is working MIRACLES for me. No D. No

pain. No bleeding from places where one should NEVER see blood. AND,

my transglutaminase has gone back down to zero.

I am dancing in the streets for being THE LUCKIEST CELIAC IN THE

UNIVERSE.

I don't care that the biopsy was negative.

At first I was bummed that the biopsy and SBFT were negative. I was

totally confused. And believe me, I did NOT want to forsake Tim

Horton's donuts!!! Nor Hostess Cupcakes, nor Little Debbie snack

cakes, nor cheesecake at a restaurant, nor marinated steaks at Bugaboo

Creek nor Portabella Mushroom soup nor any of a gazillion other things

I miss. (I don't miss beer as I gave that up 22+ years ago.) But once

I saw the miracle of GF in my own life, I was pretty sure of the

diagnosis. And when I saw that transglutaminase went to zero, there

was no longer any lingering question in my mind.

I'm the luckiest celiac in the whole history of humanity.

May you be as well. We can be tied for First Place in the Lucky Race.

Esther in RI

>

> Esther,

>

> Forgive me for my ignorance. But... if the scope comes out fine.. I

> thought that meant no cd. Because if I do the scope and it does come

> back negative.. I wouldn't go gf because I don't have symptoms

> right?

[Guest guest]

My story is a little complicated.

It all started 20 years ago with mystery, painful, sudden, explosive,

desperate " D " after some meals. I had test after test after test after

test for the last 20 years.

I got worse and worse.

Last summer I got a rash and got a LOT sicker. I got " D " up to 10x/day

and I started to bleed from my bottom.

So, doc ordered colonoscopy and celiac blood test. The celiac blood

tests were " just for yucks " . But lo, the transglutaminase came back

high. (Nothing else did. Only TTG.) So, the doc ordered a scope along

with the colonoscopy.

The scope revealed no signs of celiac. The colonoscopy revealed a rare

form of colitis. But, due to the TTG and how sick I was, we decided I

should go GF any way. I went GF at the beginning of October and WITHIN

DAYS I was feeling better. WITHIN DAYS the bloody D was GONE. G O N E

GONE, I tell you. It was a miracle. I was a whole new woman.

Meanwhile, my biopsy was sent out to a different hospital for a second

opinion because it all seemed so contradictory. The 2nd hospital also

said " no signs of celiac " .

After 3 months we did a second test of my blood, and a small-bowel

follow-through. The SBFT was to see if the celiac was lower down in

the small intestine, in a spot missed by the biopsy. This can happen

in patchy celiac or celiac low down in the small intestine. The SBFT

revealed no celiac signs in the part that could be seen. But the

terminal ileum couldn't be seen no matter how hard the radiologist

tried to get it to budge. (We tried all different positions and

several mechanisms for pushing on the terminal ileum to get it to

wiggle. No luck. When I reached my maximum radiation dose, we gave up.)

So, biopsy said " no signs of celiac " and SBFT said " no signs of

celiac " but TTG went from high to zero AND GF made the D stop.

So.... Instead of looking at is " I don't have celiac because the

biopsy and SBFT say 'no celiac' " , I'm looking at it as " I am THE

LUCKIEST CELIAC IN THE WHOLE HISTORY OF HUMANITY!! I GOT SICK ENOUGH

FOR DIAGNOSIS BEFORE SEVERE DAMAGE WAS DONE! HOOOOOOORAY! I MUST HAVE

THE SMARTEST DOCTORS IN THE UNIVERSE. " Sure, it took 20 years of

misery to finally figure this out. But the damage was not done.

I'm sure that if we had diddled around with more tests and said

" biopsy is negative so let's try removing your gall bladder " , then by

the time we figured out celiac on a 2nd try that I would have

unequivocal damage. But I'm not willing to wait that long. I've

suffered enough and the GF diet is working MIRACLES for me. No D. No

pain. No bleeding from places where one should NEVER see blood. AND,

my transglutaminase has gone back down to zero.

I am dancing in the streets for being THE LUCKIEST CELIAC IN THE

UNIVERSE.

I don't care that the biopsy was negative.

At first I was bummed that the biopsy and SBFT were negative. I was

totally confused. And believe me, I did NOT want to forsake Tim

Horton's donuts!!! Nor Hostess Cupcakes, nor Little Debbie snack

cakes, nor cheesecake at a restaurant, nor marinated steaks at Bugaboo

Creek nor Portabella Mushroom soup nor any of a gazillion other things

I miss. (I don't miss beer as I gave that up 22+ years ago.) But once

I saw the miracle of GF in my own life, I was pretty sure of the

diagnosis. And when I saw that transglutaminase went to zero, there

was no longer any lingering question in my mind.

I'm the luckiest celiac in the whole history of humanity.

May you be as well. We can be tied for First Place in the Lucky Race.

Esther in RI

>

> Esther,

>

> Forgive me for my ignorance. But... if the scope comes out fine.. I

> thought that meant no cd. Because if I do the scope and it does come

> back negative.. I wouldn't go gf because I don't have symptoms

> right?

[Guest guest]

>

> My story is a little complicated.

>

> It all started 20 years ago with mystery, painful, sudden,

explosive,

> desperate " D " after some meals. I had test after test after test

after

> test for the last 20 years.

>

> I got worse and worse.

>

> Last summer I got a rash and got a LOT sicker. I got " D " up to

10x/day

> and I started to bleed from my bottom.

>

> So, doc ordered colonoscopy and celiac blood test. The celiac blood

> tests were " just for yucks " . But lo, the transglutaminase came back

> high. (Nothing else did. Only TTG.) So, the doc ordered a scope

along

> with the colonoscopy.

>

> The scope revealed no signs of celiac. The colonoscopy revealed a

rare

> form of colitis. But, due to the TTG and how sick I was, we decided

I

> should go GF any way. I went GF at the beginning of October and

WITHIN

> DAYS I was feeling better. WITHIN DAYS the bloody D was GONE. G O N

E

> GONE, I tell you. It was a miracle. I was a whole new woman.

>

> Meanwhile, my biopsy was sent out to a different hospital for a

second

> opinion because it all seemed so contradictory. The 2nd hospital

also

> said " no signs of celiac " .

>

> After 3 months we did a second test of my blood, and a small-bowel

> follow-through. The SBFT was to see if the celiac was lower down in

> the small intestine, in a spot missed by the biopsy. This can happen

> in patchy celiac or celiac low down in the small intestine. The SBFT

> revealed no celiac signs in the part that could be seen. But the

> terminal ileum couldn't be seen no matter how hard the radiologist

> tried to get it to budge. (We tried all different positions and

> several mechanisms for pushing on the terminal ileum to get it to

> wiggle. No luck. When I reached my maximum radiation dose, we gave

up.)

>

> So, biopsy said " no signs of celiac " and SBFT said " no signs of

> celiac " but TTG went from high to zero AND GF made the D stop.

>

> So.... Instead of looking at is " I don't have celiac because the

> biopsy and SBFT say 'no celiac' " , I'm looking at it as " I am THE

> LUCKIEST CELIAC IN THE WHOLE HISTORY OF HUMANITY!! I GOT SICK ENOUGH

> FOR DIAGNOSIS BEFORE SEVERE DAMAGE WAS DONE! HOOOOOOORAY! I MUST

HAVE

> THE SMARTEST DOCTORS IN THE UNIVERSE. " Sure, it took 20 years of

> misery to finally figure this out. But the damage was not done.

>

> I'm sure that if we had diddled around with more tests and said

> " biopsy is negative so let's try removing your gall bladder " , then

by

> the time we figured out celiac on a 2nd try that I would have

> unequivocal damage. But I'm not willing to wait that long. I've

> suffered enough and the GF diet is working MIRACLES for me. No D. No

> pain. No bleeding from places where one should NEVER see blood. AND,

> my transglutaminase has gone back down to zero.

>

> I am dancing in the streets for being THE LUCKIEST CELIAC IN THE

> UNIVERSE.

>

> I don't care that the biopsy was negative.

>

> At first I was bummed that the biopsy and SBFT were negative. I was

> totally confused. And believe me, I did NOT want to forsake Tim

> Horton's donuts!!! Nor Hostess Cupcakes, nor Little Debbie snack

> cakes, nor cheesecake at a restaurant, nor marinated steaks at

Bugaboo

> Creek nor Portabella Mushroom soup nor any of a gazillion other

things

> I miss. (I don't miss beer as I gave that up 22+ years ago.) But

once

> I saw the miracle of GF in my own life, I was pretty sure of the

> diagnosis. And when I saw that transglutaminase went to zero, there

> was no longer any lingering question in my mind.

>

> I'm the luckiest celiac in the whole history of humanity.

>

> May you be as well. We can be tied for First Place in the Lucky

Race.

>

> Esther in RI

>

>

> ****

Esther,

Thanks for writing back and explaining it all. Obviously you DO have

Celiac. Sounds just terrible what you went through but sounds like

the best ending of a story ever. I am fortunate enough to not have

any super bad symptoms and am still hopeful I don't have it but if I

do I know it will be ok as long as I can drink a hard cider and

still have my nachos (my favorite snack in the whole world) Cheers,

Sally

[Guest guest]

> From: sallyjd2001

> 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]

> From: sallyjd2001

> 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]

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.

If you have a high TTG - it's possible the damage is patchy and was missed

on the biopsy, or that the person reading it did write something on the lab

report that means CD and your doctor is misinterpreting it (did you get a

copy of the actual report?). Also, if you don't eat a lot of wheat (an

average for the US is 7+ servings a day - if you have been gf and go on a

gluten challenge, they are now recommending closer to 11 servings/day for

most to get the damage to occur in a short (3-month) time, so there is a

good chance of finding it on biopsy). The question for your doctor is: if

it isn't CD, why is the TTG elevated -- is it type I diabetes, a type of

colitis or some other serious auto-immune condition and how is it treated?

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).

> -----Original Message-----

>

> Forgive me for my ignorance. But... if the scope comes out fine.. I

> thought that meant no cd. Because if I do the scope and it does come

> back negative.. I wouldn't go gf because I don't have symptoms

> right? Does this mean for sure that I gave my son cd?? I guess so

> since it appears I have it and my dh was negative. Did you go GF

> because you had symptoms? Is it common for the biopsy to come back

> negative but still have a positive ttg? I am totally ok with going

> GF if I have it.. but if the biopsy says I don't have it then I would

> still be able to drink beer!! which I love to do..

---

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

[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.

If you have a high TTG - it's possible the damage is patchy and was missed

on the biopsy, or that the person reading it did write something on the lab

report that means CD and your doctor is misinterpreting it (did you get a

copy of the actual report?). Also, if you don't eat a lot of wheat (an

average for the US is 7+ servings a day - if you have been gf and go on a

gluten challenge, they are now recommending closer to 11 servings/day for

most to get the damage to occur in a short (3-month) time, so there is a

good chance of finding it on biopsy). The question for your doctor is: if

it isn't CD, why is the TTG elevated -- is it type I diabetes, a type of

colitis or some other serious auto-immune condition and how is it treated?

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).

> -----Original Message-----

>

> Forgive me for my ignorance. But... if the scope comes out fine.. I

> thought that meant no cd. Because if I do the scope and it does come

> back negative.. I wouldn't go gf because I don't have symptoms

> right? Does this mean for sure that I gave my son cd?? I guess so

> since it appears I have it and my dh was negative. Did you go GF

> because you had symptoms? Is it common for the biopsy to come back

> negative but still have a positive ttg? I am totally ok with going

> GF if I have it.. but if the biopsy says I don't have it then I would

> still be able to drink beer!! which I love to do..

---

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

[Guest guest]

> From: sallyjd2001

>

> I told my sister in law last night and she said... well why would you

> do anything? You don't need to grow any more. DS has growth issues

> that's why he was tested.

Tell her - because the average untreated CD patient lives 10 years less than

the average citizen. And usually dies of complications of CD. Painful and

lingering deaths if cancer - quick and less painful if following a hip break

due to osteoporosis. 24% end up with other auto-immune diseases (that stay

around after going gf, but sometimes stop getting worse).

What she probably means is -- she won't be tested because she would rather

" not know " as that means she is safe continuing to eat as she does (rather

than knowing she is poisoning herself). Her odds of having CD - 10%, since

you do.

---

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

[Guest guest]

> From: sallyjd2001

>

> I told my sister in law last night and she said... well why would you

> do anything? You don't need to grow any more. DS has growth issues

> that's why he was tested.

Tell her - because the average untreated CD patient lives 10 years less than

the average citizen. And usually dies of complications of CD. Painful and

lingering deaths if cancer - quick and less painful if following a hip break

due to osteoporosis. 24% end up with other auto-immune diseases (that stay

around after going gf, but sometimes stop getting worse).

What she probably means is -- she won't be tested because she would rather

" not know " as that means she is safe continuing to eat as she does (rather

than knowing she is poisoning herself). Her odds of having CD - 10%, since

you do.

---

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

[Guest guest]

> From: sallyjd2001

>

> I told my sister in law last night and she said... well why would you

> do anything? You don't need to grow any more. DS has growth issues

> that's why he was tested.

Tell her - because the average untreated CD patient lives 10 years less than

the average citizen. And usually dies of complications of CD. Painful and

lingering deaths if cancer - quick and less painful if following a hip break

due to osteoporosis. 24% end up with other auto-immune diseases (that stay

around after going gf, but sometimes stop getting worse).

What she probably means is -- she won't be tested because she would rather

" not know " as that means she is safe continuing to eat as she does (rather

than knowing she is poisoning herself). Her odds of having CD - 10%, since

you do.

---

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

[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