Re: Can I still play in your back yard? Please?

January 6, 2006

Technically...I'm a non-celiac but gluten intolerant. I've been

annoying people here for over a year!!

paul

>

> Well, I'm back from my SBFT. No scalloping found.

>

> Health-wise, this is good news. But diagnosis-wise, I'm

> in the same limbo as before. So many signs point to celiac

> (transglutanimase, skin rash, mouth ulcers, suffering, GF

> eating works miracles), but the biopsy and sbft are negative

> for celiac.

>

> I have a friend who says " Doctors. If they can't find it,

> you ain't got it. " If they can't find celiac, I must not

> have it.

>

> On the other hand, I'm mentally in tune with Dr. Fine's

> work - " You can only use the tests to rule celiac IN, not

> rule celiac OUT. "

>

> Maybe I've just gotten really lucky and got sick before

> visible damage was done.

>

> I don't know. I'm very confused. And saddened.

>

> I'm not thrilled with GF eating, but I'm thrilled to not be

> spending 1/2 my life in the loo, and the other half looking

> for the loo. I'm glad to be in much less pain.

>

> Are " non-celiac gluten-intolerants " allowed to play in this

> back yard?

>

January 6, 2006

Technically...I'm a non-celiac but gluten intolerant. I've been

annoying people here for over a year!!

paul

>

> Well, I'm back from my SBFT. No scalloping found.

>

> Health-wise, this is good news. But diagnosis-wise, I'm

> in the same limbo as before. So many signs point to celiac

> (transglutanimase, skin rash, mouth ulcers, suffering, GF

> eating works miracles), but the biopsy and sbft are negative

> for celiac.

>

> I have a friend who says " Doctors. If they can't find it,

> you ain't got it. " If they can't find celiac, I must not

> have it.

>

> On the other hand, I'm mentally in tune with Dr. Fine's

> work - " You can only use the tests to rule celiac IN, not

> rule celiac OUT. "

>

> Maybe I've just gotten really lucky and got sick before

> visible damage was done.

>

> I don't know. I'm very confused. And saddened.

>

> I'm not thrilled with GF eating, but I'm thrilled to not be

> spending 1/2 my life in the loo, and the other half looking

> for the loo. I'm glad to be in much less pain.

>

> Are " non-celiac gluten-intolerants " allowed to play in this

> back yard?

>

January 6, 2006

Technically...I'm a non-celiac but gluten intolerant. I've been

annoying people here for over a year!!

paul

>

> Well, I'm back from my SBFT. No scalloping found.

>

> Health-wise, this is good news. But diagnosis-wise, I'm

> in the same limbo as before. So many signs point to celiac

> (transglutanimase, skin rash, mouth ulcers, suffering, GF

> eating works miracles), but the biopsy and sbft are negative

> for celiac.

>

> I have a friend who says " Doctors. If they can't find it,

> you ain't got it. " If they can't find celiac, I must not

> have it.

>

> On the other hand, I'm mentally in tune with Dr. Fine's

> work - " You can only use the tests to rule celiac IN, not

> rule celiac OUT. "

>

> Maybe I've just gotten really lucky and got sick before

> visible damage was done.

>

> I don't know. I'm very confused. And saddened.

>

> I'm not thrilled with GF eating, but I'm thrilled to not be

> spending 1/2 my life in the loo, and the other half looking

> for the loo. I'm glad to be in much less pain.

>

> Are " non-celiac gluten-intolerants " allowed to play in this

> back yard?

>

January 6, 2006

Hi Esther,

I'm in the same boat as you, I think. I went to one Dr who did a colonoscopy

(mom has

Crohn's) and one blood test and said I had IBS. It sounded like those other

tests were just

too much fun and I didn't want to miss out, so I found a doctor who knows about

Celiac

and got some more tests. (Joking aside, I tried GF and felt so much better, I

decided that I

needed to dig a bit deaper and went to the 2nd Dr.) He said he didn't think I

had Celiac,

but to go back on gluten and we would do all the testing to make sure. I asked

if I did not

have celiac, why would I feel SO much better being off wheat for two months? He

said that

honestly they just did not understand yet all the compounds that make up certain

foods

and that I could not have celiac specifically, but could still just feel better

with no wheat.

Tests have been done and initial results from the nurse over the phone said the

endoscopy

was negative, but I have a follow up meeting with the Dr in two weeks to discuss

everything. I still have to eat wheat until he is sure he is done with all

testing and doesn't

need to repeat anything that was inconclusive. Fortunately, I do not have the

instant

negative digestive reactions described by some - my symptoms come on more

gradually

and sort of sneak up so you don't really realize you are feeling less than good

until you are

feeling really bad. I thought it would be a lovely festival of eating lots of

bread and cakes

after none for two months, but I am not enjoying them nearly as much as I

thought I would

and after two months of eating them, am impatient to get back to eating what my

body is

telling me is goood for it.

I have also been struggling with thinking that if I am not proven to be celiac,

then what is

going on. Could I be so crazy as to actually be making up gluten problems just

because I

read an article about celiac - as implied by Dr #1. I am slowly coming to terms

with the

idea that I could just be gluten intolerant. Not sure why it is so hard to

grasp, as I have

been lactose intolerant for over 10 years and didn't have a problem believing

that -

probably because the reaction was within an hour of eating instead of delayed.

I'll stay in the backyard with you too...

(oops, this was longer than I anticipated)

>

> Well, I'm back from my SBFT. No scalloping found.

>

> Health-wise, this is good news. But diagnosis-wise, I'm

> in the same limbo as before. So many signs point to celiac

> (transglutanimase, skin rash, mouth ulcers, suffering, GF

> eating works miracles), but the biopsy and sbft are negative

> for celiac.

>

> I have a friend who says " Doctors. If they can't find it,

> you ain't got it. " If they can't find celiac, I must not

> have it.

>

> On the other hand, I'm mentally in tune with Dr. Fine's

> work - " You can only use the tests to rule celiac IN, not

> rule celiac OUT. "

>

> Maybe I've just gotten really lucky and got sick before

> visible damage was done.

>

> I don't know. I'm very confused. And saddened.

>

> I'm not thrilled with GF eating, but I'm thrilled to not be

> spending 1/2 my life in the loo, and the other half looking

> for the loo. I'm glad to be in much less pain.

>

> Are " non-celiac gluten-intolerants " allowed to play in this

> back yard?

>

January 6, 2006

I think you'll find that there are alot more people than you might

think on this list who are not officially diagnosed. There are lots

of different ways to end up in that situation. Personally, I'm a

believer in intervention before the villi are gone. We tested thru

enterolab and that was enough for me. I certainly see the value of

an official diagnosis, but since that can be elusive (as you have

experienced), I don't see the value of continuing to be sick when

being GF clearly improves your general state of being.

Sue in Denver

>

> Well, I'm back from my SBFT. No scalloping found.

>

> Health-wise, this is good news. But diagnosis-wise, I'm

> in the same limbo as before. So many signs point to celiac

> (transglutanimase, skin rash, mouth ulcers, suffering, GF

> eating works miracles), but the biopsy and sbft are negative

> for celiac.

>

> I have a friend who says " Doctors. If they can't find it,

> you ain't got it. " If they can't find celiac, I must not

> have it.

>

> On the other hand, I'm mentally in tune with Dr. Fine's

> work - " You can only use the tests to rule celiac IN, not

> rule celiac OUT. "

>

> Maybe I've just gotten really lucky and got sick before

> visible damage was done.

>

> I don't know. I'm very confused. And saddened.

>

> I'm not thrilled with GF eating, but I'm thrilled to not be

> spending 1/2 my life in the loo, and the other half looking

> for the loo. I'm glad to be in much less pain.

>

> Are " non-celiac gluten-intolerants " allowed to play in this

> back yard?

>

January 6, 2006

Ours is undiagnosed, so we might be in the same boat.

Since we keep a gluten free home I feel like this is my ultimate

support group for this issue.

>

> Well, I'm back from my SBFT. No scalloping found.

>

> Health-wise, this is good news. But diagnosis-wise, I'm

> in the same limbo as before. So many signs point to celiac

> (transglutanimase, skin rash, mouth ulcers, suffering, GF

> eating works miracles), but the biopsy and sbft are negative

> for celiac.

>

> I have a friend who says " Doctors. If they can't find it,

> you ain't got it. " If they can't find celiac, I must not

> have it.

>

> On the other hand, I'm mentally in tune with Dr. Fine's

> work - " You can only use the tests to rule celiac IN, not

> rule celiac OUT. "

>

> Maybe I've just gotten really lucky and got sick before

> visible damage was done.

>

> I don't know. I'm very confused. And saddened.

>

> I'm not thrilled with GF eating, but I'm thrilled to not be

> spending 1/2 my life in the loo, and the other half looking

> for the loo. I'm glad to be in much less pain.

>

> Are " non-celiac gluten-intolerants " allowed to play in this

> back yard?

>

January 6, 2006

I am officially undiagnosed as well. I had all of the symptoms except

anemia (maybe because I always took a folic acid supplement?), as well

as Sjogren's symptoms, but the blood tests came back negative. When I

went gluten free they all went away. Now, eight months after going

completely gluten-free, it is like I was never sick.

When my blood tests came back negative, my doctor said she could refer

me to a specialist but it would take several months. I really wanted a

diagnosis since I have three children and four siblings, but I could not

face staying sick that long.

Donna, with delicious pizza cooking in the oven

esther_p210 wrote:

> Are " non-celiac gluten-intolerants " allowed to play in this

> back yard?

>

January 6, 2006

I am officially undiagnosed as well. I had all of the symptoms except

anemia (maybe because I always took a folic acid supplement?), as well

as Sjogren's symptoms, but the blood tests came back negative. When I

went gluten free they all went away. Now, eight months after going

completely gluten-free, it is like I was never sick.

When my blood tests came back negative, my doctor said she could refer

me to a specialist but it would take several months. I really wanted a

diagnosis since I have three children and four siblings, but I could not

face staying sick that long.

Donna, with delicious pizza cooking in the oven

esther_p210 wrote:

> Are " non-celiac gluten-intolerants " allowed to play in this

> back yard?

>

January 6, 2006

I am officially undiagnosed as well. I had all of the symptoms except

anemia (maybe because I always took a folic acid supplement?), as well

as Sjogren's symptoms, but the blood tests came back negative. When I

went gluten free they all went away. Now, eight months after going

completely gluten-free, it is like I was never sick.

When my blood tests came back negative, my doctor said she could refer

me to a specialist but it would take several months. I really wanted a

diagnosis since I have three children and four siblings, but I could not

face staying sick that long.

Donna, with delicious pizza cooking in the oven

esther_p210 wrote:

> Are " non-celiac gluten-intolerants " allowed to play in this

> back yard?

>

January 6, 2006

ahhhh Pizza?? What time is dinner?? I am UN officially diagnosed too! I thought I had chronic fatigue, was always tired, brutal mood swings, gained 20 pounds in a year, constipation, mouth sores, snotty nose, heel pain, always starving, migraines all the time....Three days off gluten and it was like night and day! I can actually be awake to SEE night and day!! : ) I was told "you're getting older now...you just can't eat like you used to..." Thought I would throttle the gyn who said that. Middle age spread my a**. Ok my spread is still there, but I can run circles around with the kids now and can laugh too. AND I'm putting Excederin out of business cuz I'm not living on them anymore. So there. <raspberry> It's ALL disappeared!! My only quandry is to what extent I'm hurting myself. What I mean is.... just one little grain of gluten can cause damage,

serious repricussions for a celiac. If you're Intolerant, then maybe you don't have to be so fastidius? So which am I? I just feel like an imposter. But I DON"T think, if anyone would believe me anyway, that I could go back to eating the way I did. There is just that much difference. <sigh> Did I say that my 10 yr old is "doing" this with me?? He even says he feels better and his head doesn't hurt as much. He has had terrible constipation since he was a baby! Not since going gf! And he says his headaches are less too! And when he DOES have one they're not as bad. So in closing.....THANK you for letting me "play in your backyard!!" I have learned a wealth of information as well as have had fun emails with some members! You all are the greatest AND the friendliest! Thanks for all. kathi in houston Donna Gillis wrote: I am officially undiagnosed as well. I had all of the symptoms except anemia (maybe because I always took a folic acid supplement?), as well as Sjogren's symptoms, but the blood tests came back negative. When I went gluten free they all went away. Now, eight months after going completely gluten-free, it is like I was never sick.When my blood tests came back negative, my doctor said she could refer me to a specialist but it would take several months. I really wanted a diagnosis since I have three children and four siblings, but I could not face staying sick that long.Donna, with delicious pizza cooking in the ovenesther_p210 wrote:> Are "non-celiac gluten-intolerants" allowed to play in this>

back yard?>

January 6, 2006

ahhhh Pizza?? What time is dinner?? I am UN officially diagnosed too! I thought I had chronic fatigue, was always tired, brutal mood swings, gained 20 pounds in a year, constipation, mouth sores, snotty nose, heel pain, always starving, migraines all the time....Three days off gluten and it was like night and day! I can actually be awake to SEE night and day!! : ) I was told "you're getting older now...you just can't eat like you used to..." Thought I would throttle the gyn who said that. Middle age spread my a**. Ok my spread is still there, but I can run circles around with the kids now and can laugh too. AND I'm putting Excederin out of business cuz I'm not living on them anymore. So there. <raspberry> It's ALL disappeared!! My only quandry is to what extent I'm hurting myself. What I mean is.... just one little grain of gluten can cause damage,

serious repricussions for a celiac. If you're Intolerant, then maybe you don't have to be so fastidius? So which am I? I just feel like an imposter. But I DON"T think, if anyone would believe me anyway, that I could go back to eating the way I did. There is just that much difference. <sigh> Did I say that my 10 yr old is "doing" this with me?? He even says he feels better and his head doesn't hurt as much. He has had terrible constipation since he was a baby! Not since going gf! And he says his headaches are less too! And when he DOES have one they're not as bad. So in closing.....THANK you for letting me "play in your backyard!!" I have learned a wealth of information as well as have had fun emails with some members! You all are the greatest AND the friendliest! Thanks for all. kathi in houston Donna Gillis wrote: I am officially undiagnosed as well. I had all of the symptoms except anemia (maybe because I always took a folic acid supplement?), as well as Sjogren's symptoms, but the blood tests came back negative. When I went gluten free they all went away. Now, eight months after going completely gluten-free, it is like I was never sick.When my blood tests came back negative, my doctor said she could refer me to a specialist but it would take several months. I really wanted a diagnosis since I have three children and four siblings, but I could not face staying sick that long.Donna, with delicious pizza cooking in the ovenesther_p210 wrote:> Are "non-celiac gluten-intolerants" allowed to play in this>

back yard?>

January 6, 2006

Oh...I forgot to mention I also have Hashimoto's. Am due back for a check up in March. Haven't had the blood tested since going gf. T'will be interesting! kathiKathi Sandler wrote: ahhhh Pizza?? What time is dinner?? I am UN officially diagnosed too! I thought I had chronic fatigue, was always tired, brutal mood swings, gained 20 pounds in a year, constipation, mouth sores, snotty nose, heel pain, always starving, migraines all the time....Three days off gluten and it was like night and day! I can actually be awake to SEE night and day!! : ) I was told "you're getting older now...you just can't eat like you used to..." Thought I would throttle the gyn who said that. Middle age

spread my a**. Ok my spread is still there, but I can run circles around with the kids now and can laugh too. AND I'm putting Excederin out of business cuz I'm not living on them anymore. So there. <raspberry> It's ALL disappeared!! My only quandry is to what extent I'm hurting myself. What I mean is.... just one little grain of gluten can cause damage, serious repricussions for a celiac. If you're Intolerant, then maybe you don't have to be so fastidius? So which am I? I just feel like an imposter. But I DON"T think, if anyone would believe me anyway, that I could go back to eating the way I did. There is just that much difference. <sigh> Did I say that my 10 yr old is "doing" this with me?? He even says he feels better and his head doesn't hurt as much. He has had terrible constipation since he was a baby! Not since going gf!

And he says his headaches are less too! And when he DOES have one they're not as bad. So in closing.....THANK you for letting me "play in your backyard!!" I have learned a wealth of information as well as have had fun emails with some members! You all are the greatest AND the friendliest! Thanks for all. kathi in houston Donna Gillis wrote: I am officially undiagnosed as well. I had all of the symptoms except anemia (maybe because I always took a folic acid supplement?), as well as Sjogren's symptoms, but the blood tests came back negative. When I went gluten free they all went away. Now, eight months after going completely gluten-free, it is like I was never sick.When my

blood tests came back negative, my doctor said she could refer me to a specialist but it would take several months. I really wanted a diagnosis since I have three children and four siblings, but I could not face staying sick that long.Donna, with delicious pizza cooking in the ovenesther_p210 wrote:> Are "non-celiac gluten-intolerants" allowed to play in this> back yard?>

January 6, 2006

Oh...I forgot to mention I also have Hashimoto's. Am due back for a check up in March. Haven't had the blood tested since going gf. T'will be interesting! kathiKathi Sandler wrote: ahhhh Pizza?? What time is dinner?? I am UN officially diagnosed too! I thought I had chronic fatigue, was always tired, brutal mood swings, gained 20 pounds in a year, constipation, mouth sores, snotty nose, heel pain, always starving, migraines all the time....Three days off gluten and it was like night and day! I can actually be awake to SEE night and day!! : ) I was told "you're getting older now...you just can't eat like you used to..." Thought I would throttle the gyn who said that. Middle age

spread my a**. Ok my spread is still there, but I can run circles around with the kids now and can laugh too. AND I'm putting Excederin out of business cuz I'm not living on them anymore. So there. <raspberry> It's ALL disappeared!! My only quandry is to what extent I'm hurting myself. What I mean is.... just one little grain of gluten can cause damage, serious repricussions for a celiac. If you're Intolerant, then maybe you don't have to be so fastidius? So which am I? I just feel like an imposter. But I DON"T think, if anyone would believe me anyway, that I could go back to eating the way I did. There is just that much difference. <sigh> Did I say that my 10 yr old is "doing" this with me?? He even says he feels better and his head doesn't hurt as much. He has had terrible constipation since he was a baby! Not since going gf!

And he says his headaches are less too! And when he DOES have one they're not as bad. So in closing.....THANK you for letting me "play in your backyard!!" I have learned a wealth of information as well as have had fun emails with some members! You all are the greatest AND the friendliest! Thanks for all. kathi in houston Donna Gillis wrote: I am officially undiagnosed as well. I had all of the symptoms except anemia (maybe because I always took a folic acid supplement?), as well as Sjogren's symptoms, but the blood tests came back negative. When I went gluten free they all went away. Now, eight months after going completely gluten-free, it is like I was never sick.When my

blood tests came back negative, my doctor said she could refer me to a specialist but it would take several months. I really wanted a diagnosis since I have three children and four siblings, but I could not face staying sick that long.Donna, with delicious pizza cooking in the ovenesther_p210 wrote:> Are "non-celiac gluten-intolerants" allowed to play in this> back yard?>

January 6, 2006

I am officially Dx'd Celiac and prior too becoming gluten free.... I was similar to you....

I was told I 'might' have chronic fatigue, was ALWAYS tired, brutal mood swings (often blamed on hormones of one sort or another), gained 20 pounds in a month, Diarrhea, snotty nose, itchy eyes, heel pain, always starving, migraine auras ....

and just like you.... I was told "you're getting older now...you just can't eat like you used to..." AND I needed to exercise and I'd have more energy(?) At 35 I felt like I was 75... now at least at 44 I'm feeling closer to my own age and sometimes even younger:-)

And quite frankly if it hadn't been for my brother in PA being diagnosed because of severe migraines-- I probably would still be undiagnosed and wouldn't know a thing about Celiac Disease!

I think whether you are undiagnosed, self-diagnosed, doctor diagnosed, have CD, are related to or work with someone who has CD, friends or neighbors to someone who has CD, or just interested in learning more about CD- If what you bring to the table is GF thought provoking questions, GF information, GF recipes, GF tips, GF support, and GF fellowship-- then come on in and join the GF fun!!!