Sub-clinical Celiac vs Celiac - huh?

September 6, 2006

Hi All - I'm new to the group.

I saw my GI doc and he ordered the blood tests which haven't come

back. The lab couldn't find them!! So probably will have to do

again. Anyways, at this point because the biopsy came

back " suggested of gluten-sensitivity enteropathy " the doc says I

have sub-clinical celiac. Basically he said it means I don't have

all 5 markers for Celiac - just the one - the biopsy. Isn't the

biopsy the gold standard though? I'm just really confused because he

said if the blood comes back negative then I don't have Celiac and

don't have to follow a gluten-free diet. However, he set me up to

see a nutritionist. They called and said the diagnosis was " sub-

clinical celiac " .

I'm just confused now. I'm also starting to get depressed about this

whole thing. I feel like even trying to read labels is a big

challenge because it is SO confusing! I don't see the nutritionist

until Oct 18th which is a long time. Should I start gluten-free diet

now? I don't really have any bothersome symptoms - at least I didn't

think I did. I get migraines, irritable, etc but I thought that was

perimenopause now I'm wondering if it is all related to gluten.

Thanks for reading - listening!

September 6, 2006

,

If the biopsy shows damage, then my opinion is that you should be on the GF diet. These doctors are too obsessesd with treating lab results rather than patients.

An alternative is also to use the testing through enterolab: www.enterolab.com. It's a stool test and although mainstream GI doctors consider it to be experimental, the inventer believes it to be much more accurate than blood tests.

Before going GF, migraines were a very regular part of my life. I have not had a migraine since going GF/CF almost 3 years ago. I didn't realize the impact gluten had on my body as I had very gradually reduced over a 6 month period (I also had other health issues going on at the same time, so it was difficult to tell. But I did the gluten challenge prior to the enterolab test (something they actually DON'T recommend) and I felt so, so bad, I didn't care what the test results were, I was never going to eat gluten again. If you've lived with this for alot of your life as many of us have, you don't know normal GI functioning. This was the same for my kids, especially my younger son who never had a BM without alot of pain from intestinal contractions, but didn't know until after going GF that it wasn't supposed to feel that way.

I hope this helps. I find it utterly ridiculous that these doctors expect you to wait until they think the damage is sufficient in their minds to change your diet, when by changing your diet, you can be preventing other problems down the road.

Just my personal opinions.

B.

-------------- Original message --------------

Hi All - I'm new to the group.I saw my GI doc and he ordered the blood tests which haven't come back. The lab couldn't find them!! So probably will have to do again. Anyways, at this point because the biopsy came back "suggested of gluten-sensitivity enteropathy" the doc says I have sub-clinical celiac. Basically he said it means I don't have all 5 markers for Celiac - just the one - the biopsy. Isn't the biopsy the gold standard though? I'm just really confused because he said if the blood comes back negative then I don't have Celiac and don't have to follow a gluten-free diet. However, he set me up to see a nutritionist. They called and said the diagnosis was "sub-clinical celiac". I'm just confused now. I'm also starting to get depressed about this whole thing. I feel like even trying to read labels is a big challenge because it is SO confusing! I don't see the nutritionist until Oct 18th which is a long time

.. Should I start gluten-free diet now? I don't really have any bothersome symptoms - at least I didn't think I did. I get migraines, irritable, etc but I thought that was perimenopause now I'm wondering if it is all related to gluten.Thanks for reading - listening!

September 6, 2006

Biopsy is the gold standard, and should be a diagnosis Celiac

regardless, but the biopsy is subject to opinion, though I'm not

sure of any other reason for the damage to the villi. If you have

some of the other symptoms, ie the big D, IBS, anemia, vitimin

diff., etc etc and the biopsy, your Dr should order you to go on the

diet. Most likely one of the blood tests will confirm. If not, try

the diet, if it works, change doctors and tell the new one that you

have Celiac. I find if you take away the responsiblity for a

diagnosis, Dr's seem to be more managable. Why do I say this? Well I

was told I was IBS over 20 years ago, anemic 15 years ago and just

last year that I had celiac and a hiatal hernia, and this year

osteopenia. My Doctors ordered Fosomax for my osteopenia, without

knowing how potentially dangerous this drug is. Yes they are doing

the best they know for me but they don't know everything. Your

symtoms might be intolerance, but the biopsy results show damage,

when your villi are damaged, there are so many other problems that

arise. Wait to get the other blood tests done before going on the

diet. And then when you do go on the diet, please don't stress about

it, it may seem daunting, but it isn't so bad. Thats why we're here,

to help show you it isn't so tough and many of us are doing it!

Smile!! there are many worse things to have.

>

> Hi All - I'm new to the group.

>

> I saw my GI doc and he ordered the blood tests which haven't come

> back. The lab couldn't find them!! So probably will have to do

> again. Anyways, at this point because the biopsy came

> back " suggested of gluten-sensitivity enteropathy " the doc says I

> have sub-clinical celiac. Basically he said it means I don't have

> all 5 markers for Celiac - just the one - the biopsy. Isn't the

> biopsy the gold standard though? I'm just really confused because

he

> said if the blood comes back negative then I don't have Celiac and

> don't have to follow a gluten-free diet. However, he set me up to

> see a nutritionist. They called and said the diagnosis was " sub-

> clinical celiac " .

>

> I'm just confused now. I'm also starting to get depressed about

this

> whole thing. I feel like even trying to read labels is a big

> challenge because it is SO confusing! I don't see the nutritionist

> until Oct 18th which is a long time. Should I start gluten-free

diet

> now? I don't really have any bothersome symptoms - at least I

didn't

> think I did. I get migraines, irritable, etc but I thought that

was

> perimenopause now I'm wondering if it is all related to gluten.

>

> Thanks for reading - listening!

>

September 6, 2006

, go GF and hang around here. You won't regret it.

And if you do (perchance) regret it somehow, you're free to

pick up gluten again. For me? One crouton crumb is all it takes

to convince me to stay GF! Not even a whole bleepin' crouton! Just

one crouton crumb and I'm miserable for days. Give GF a real go.

If they're seeing signs of celiac now, you're far better off to

go GF and head off additional disease at the pass.

I think your doc is dead wrong. I'm proof that one can have negative

blood tests and still be sick and suffering. I suffered for five

years after negative blood tests until I finally flunked the blood

tests and went GF. BTW, I PASSED the biopsy test! So your case is

even more clear cut than mine. I don't regret GF for an instant.

Esther in RI

>

> ... the biopsy came

> back " suggested of gluten-sensitivity enteropathy " the doc says I

> have sub-clinical celiac. Basically he said it means I don't have

> all 5 markers for Celiac - just the one - the biopsy. ...

September 7, 2006

Hi , Are you broken out on your skin with small blisters, that itch,

then when they pop are real painful? I had that happen to me back in 2001. I

went to a family doctor, and wasn't getting better, went to him a few more

times, then finally took it on my own and went to the Dermatologist. He took

an biopsy from a few of the blisters, and less than a week, I got the

results which said I had Dermatitis Herpetiformis, it's not contagious, and

has nothing to do with Herpes, it's related to Celiac. I was tested for

Celiac this year by my GI doctor and the test came out negative, but I have

to remain wheat/gluten free. I know how you're feeling, I felt the same way

when I found out, and learned the wheat and gluten is in just about

everything and not just foods, but medications, shampoos, etc...

You're in the right group. I'm new too, and I have been getting great

advice. Hope your doctor finds answers for you and if you have to, talk to

a pediatrician, when you eat out, ask about the foods at restaurants, which

is what I've learned I had to do.

Hugs, Donna

Dean & Donna ' Appaloosa Horses

www.donnaappaloosahorses.com