Re: INTRO: Can I stay ??? :)

June 1, 2006

Heidi, Hi and welcome. I just joined myself and have some of your symptoms. I'm so glad you're feeling so much better. Could you please tell me more about your neuropathy as a friend suffers from that and is wondering if it might be celiac. That's a symptom I don't have so can't give her much guidance.Heidi wrote: Hi there!I have no official diagnosis of CD, but I've decided out of fairness to my body to pretend that I have Basically, I have a history of mouth ulcers, bilateral enamel defects, chronic diahr., severe stomach, back and chest cramps, high blood pressure for a year, inability to lose weight since pregnancy (yeah, I know, that may just be me ), neuropathy, family history of autoimmune diseases,

etc. Gluten and (sob) popcorn seem to set it off. Oh yeah, and really bad eczema blisters tween my toesies and on my palms if I eat dairy. Things really went crazy when I had kids. Anyhow, I feel GREAT GREAT GREAT since I went off gluten, corn and dairy, but since I accidently on purpose went off gluten before hearing about CD, I couldn't get tested anyhow. (meaning that I realized that I couldn't eat it, but didn't realize that would mess up tests) I get reactions (typically neuropathy and swollen joints that last 1-5 days) when I eat gluten or corn now. So I don't. Every single problem (including weight - yeah!) is gone now. Most were gone within 2 weeks of excluding the problem. My 2 daughters (2 and 5) also have a few issues - the 5 year old has stomach and back pains, leg cramps, headaches and diahr. about 1-2 times/week. The 2 year old has

constipation and tummy aches (sort of a chicken and the egg situation). They have negative blood tests (none of us have had the genetic tests), but all their issues disappear on a gluten free diet.Can we pretend we are real CD people and stay? What a great group!Heidi V. GreyVagariesmvgrey@... __________________________________________________

June 1, 2006

I don't have the official diagnosis, either, though my 16 year old son does. I decided I felt too bad to go off the gf diet to get the official diagnosis, and I'm a big girl, I can just tell them I am. I had the fortune of moving to a different state shortly after the time I figured out I was. I just told my new doctor I was.

And you're right, this list is great.

--loriann aka Victree the Christian clown

June 1, 2006

Welcome! There are lots of us here who don't have official

diagnoses, so you are certainly welcome to stay! Based on you

history and how you respond to a GF diet I don't think there is any

doubt you need to stay away from gluten. You may find your dairy

intollerance diminishes over time as your GF tract heals, so that at

least may not be permanent.

I tested my kids with enterolab. Now I sort of regret that I didn't

pursue a Celiac diagnosis, but I felt at the time that there was no

doubt they needed to be GF and to some degree I didn't see the point

in waiting until there was enough damage that they test positive. I

figure when they are older they can decide if they want to be

tested. Maybe the testing will be improved by then and they won't

need to eat gluten for 2 months. For now, we are all happier and

healthier GF, and that's enough for me.

Sue in Denver

>

> Hi there!

>

> I have no official diagnosis of CD, but I've decided out of

fairness

> to my body to pretend that I have Basically, I have a history

of

> mouth ulcers, bilateral enamel defects, chronic diahr., severe

> stomach, back and chest cramps, high blood pressure for a year,

> inability to lose weight since pregnancy (yeah, I know, that may

> just be me ), neuropathy, family history of autoimmune diseases,

> etc. Gluten and (sob) popcorn seem to set it off. Oh yeah, and

> really bad eczema blisters tween my toesies and on my palms if I

eat

> dairy. Things really went crazy when I had kids. Anyhow, I feel

> GREAT GREAT GREAT since I went off gluten, corn and dairy, but

since

> I accidently on purpose went off gluten before hearing about CD, I

> couldn't get tested anyhow. (meaning that I realized that I

> couldn't eat it, but didn't realize that would mess up tests) I

get

> reactions (typically neuropathy and swollen joints that last 1-5

> days) when I eat gluten or corn now. So I don't. Every single

> problem (including weight - yeah!) is gone now. Most were gone

> within 2 weeks of excluding the problem.

> My 2 daughters (2 and 5) also have a few issues - the 5 year old

has

> stomach and back pains, leg cramps, headaches and diahr. about 1-2

> times/week. The 2 year old has constipation and tummy aches (sort

> of a chicken and the egg situation). They have negative blood

tests

> (none of us have had the genetic tests), but all their issues

> disappear on a gluten free diet.

> Can we pretend we are real CD people and stay? What a great group!

> Heidi

>

June 1, 2006

>

> Hi there!

(snip)

> Can we pretend we are real CD people and stay? What a great group!

> Heidi

Wadda you mean, " pretend? "

You have about the same level of diagnosis as many people here, and I

think if GF makes you feel better, you've very welcome to stay here.

All too many of us here have learned the hard way that doctors don't

know everything, and sometimes we need to stick with what makes our

lives liveable, even without official permission. ;-)

Maureen

June 1, 2006

Thanks for all of the welcoming comments - I start doubting my

sanity at times! Of course, today I'm cleaning out the sofas - holy

cow who would have guessed that's where we keep the phone? - and I

must have gotten some of the crumbs on my fingers and into my mouth

or something - neuropathy here we go! I know I got something - my

fingers are stiffening and I've got pins and needles in a patch

between my shoulderblades - for the person who asked about my

neuropathy, that's where it starts with me. Then it spreads

outwards so all my skin hurts and my joints ache -sort of like the

flu. Not to mention the bloating and yes, HICCUPS Go figure. I

get them every time - severely. A lot of people get perepheral

neuropathy which is tingly or numb feet and hands. Mine is the

general sort and goes in the opposite direction. Some people

experience severe pain, some go numb, some get cold, some have pins

and needles. I also have an arm that goes numb at night if I've

been glutenated.

I have a terrific husband though. He did comment tonight that he's

not quite sure how I've managed to stay alive this long!

Sue in Denver - you said you had your kids tested with enterolab.

I'm just about to do the simple gluten test for my kids through

them. What was your experience? Thanks so much!

Heidi in Raleigh

June 1, 2006

That's all I did with them as well, at least initially. Tested the

three of us for gluten sensitivity. I started with my DD, because

she was having acute GI symptoms. She tested positive and we got a

whole new kid GF. With her positive, I decided to test myself and

my DS. We tested positive and I did a follow-up fat malabsorption

test for the two of us. You can order additional tests up to 6 mos

after the first tests. I also did the genetic test on myself. I

have one of the genes for Celiac, and one for gluten sensitivity. I

also had fat malabsorption. That was enough for me to give the

stuff up.

Anyway, I found enterolab very responsive and good to work with.

They are good at answering questions and are thorough in their

reports. It was right for us at the time.

Sue in Denver

>

> Sue in Denver - you said you had your kids tested with enterolab.

> I'm just about to do the simple gluten test for my kids through

> them. What was your experience? Thanks so much!

>

> Heidi in Raleigh

>

June 2, 2006

I believe that is where you keep your phone, because it is where we

keep the remote and where the dogs keep the toy they have to dig

up!

>

> Thanks for all of the welcoming comments - I start doubting my

> sanity at times! Of course, today I'm cleaning out the sofas -

holy

> cow who would have guessed that's where we keep the phone? - and I

> must have gotten some of the crumbs on my fingers and into my mouth

> or something - neuropathy here we go! I know I got something - my

> fingers are stiffening and I've got pins and needles in a patch

> between my shoulderblades - for the person who asked about my

> neuropathy, that's where it starts with me. Then it spreads

> outwards so all my skin hurts and my joints ache -sort of like the

> flu. Not to mention the bloating and yes, HICCUPS Go figure.

I

> get them every time - severely. A lot of people get perepheral

> neuropathy which is tingly or numb feet and hands. Mine is the

> general sort and goes in the opposite direction. Some people

> experience severe pain, some go numb, some get cold, some have pins

> and needles. I also have an arm that goes numb at night if I've

> been glutenated.

>

> I have a terrific husband though. He did comment tonight that he's

> not quite sure how I've managed to stay alive this long!

>

> Sue in Denver - you said you had your kids tested with enterolab.

> I'm just about to do the simple gluten test for my kids through

> them. What was your experience? Thanks so much!

>

> Heidi in Raleigh

>

June 2, 2006