Who is gluten free?

[arlia11]

who is GF?

I was a celiac for 6 years - misdiagnosed (argh), but I am VERY familiar with GF living.

[jessickascarling]

i'm gluten freeeeeee :( i have non celiac gluten intolerance. and since i work for gastroenterology drs (the only ones in my area mind you!) i REFUSE to have an egd so they can biopsy to confirm if it's truly that or if i actually have celiac. it SUCKS.

if you don't mind me asking, how did they find out you were misdiagnosed?

[SubyGirl8330]

i'm gluten freeeeeee :( i have non celiac gluten intolerance. and since i work for gastroenterology drs (the only ones in my area mind you!) i REFUSE to have an egd so they can biopsy to confirm if it's truly that or if i actually have celiac. it SUCKS.

if you don't mind me asking, how did they find out you were misdiagnosed?

that stinks! I remember when margo was GF- we went to the melting pot and had to have them do special things to the foods.. the waiter was so confused

[jessickascarling]

that stinks! I remember when margo was GF- we went to the melting pot and had to have them do special things to the foods.. the waiter was so confused

ya... i hate going out to eat now cuz of it. for the first few months i cheated alllll the time. now i don't cheat nearly as much. i guess it depends on how much i want to get sick! haha

[SubyGirl8330]

lol i brought an ice cream cake into work on wednesday and one of the dr's is prego and she debated eating it.. and decided it wouldn't taste that bad coming back up, so she had some :p

[arlia11]

My original doctor read my tests (biopsy and blood) and told me they were positive, that I had it.

Then I go to Beth Israel Deaconess in Boston to the Celiac Center and the guy takes my blood levels and everything and notices my blood test was NEGATIVE. So he puts me on a gluten challenge and then does the biopsy.

Negative again.

So yeah, he basically told me my old doctor didn't know anything and that she basically screwed me for 6 years over it.

I can give you a recipe for GF crepes, or other such nummy recipes. My mother spent time fixing our favorite recipes for me - like christmas cookies or choc chips, and things like the crepes.

[frenchie]

Yay for Beth Israel, one more reason I can be proud to work there!!

[jessickascarling]

My original doctor read my tests (biopsy and blood) and told me they were positive, that I had it.

Then I go to Beth Israel Deaconess in Boston to the Celiac Center and the guy takes my blood levels and everything and notices my blood test was NEGATIVE. So he puts me on a gluten challenge and then does the biopsy.

Negative again.

So yeah, he basically told me my old doctor didn't know anything and that she basically screwed me for 6 years over it.

I can give you a recipe for GF crepes, or other such nummy recipes. My mother spent time fixing our favorite recipes for me - like christmas cookies or choc chips, and things like the crepes.

ooh ya, recipes would be fabulous!!! it's been wicked hard to find things that i can have. luckily though, it's becoming more common so i can find these things in shaws or demoulas.

lately i've been coding a lot of op notes where the docs are saying people w/ a gluten sensitivity have IBS so it's possible that's why the diet works for me. but like i said, i'm not going to get tested for anything. and that reallllllly sucks though that your previous doc incorrectly interpreted your tests.

[arlia11]

Yeah Totally sucks.

I am going to dig up my recipes for ya. :) I'll post them up in here!

btw - www.glutenfreeda.com has really good recipes.

[jessickascarling]

thanks!!

[AgentRabbit]

my dog is gluten free!

[xxthat girlxx]

my dog is gluten free!

George!!

And.... he has gray hair because of it!

[arlia11]

lolololololololol no no he has grey hair cuz of his allergy ;)

[xxthat girlxx]

lolololololololol no no he has grey hair cuz of his allergy ;)

Oh oh oh. Whoops.

[Hex Kitten]

I've been gluten free since last March or April...over a year, and I still struggle with finding enough to eat that I'm interested in. I haven't been officially diagnosed, but I started having major difficulties digesting things after I was put out to have my wisdom teeth surgically removed. I tried eliminating certain types of food for a few days at a time and keeping a food journal, and I narrowed it down to bread/crackers/etc. A few more slip-ups and a lot of label-reading later, and I figured out it's all sources of gluten that hurts me. Went for a blood test for celiac after I had been gluten-free for a couple weeks, and it came back negative. Doctor said maybe I needed to keep eating gluten and do the biopsy, but I am in so much pain after eating gluten that I said never again.

Now and then, I mistakenly expose myself to it and go through the pain again...I'm getting better at making sure restaurants understand what I need from them, or I just don't eat there.

[xxthat girlxx]

I need my wisdom teeth out.... I'll be sad if that makes me gluten free.

[Hex Kitten]

The surgery itself didn't do it, it was (possibly) the traumatic effect of being put under general anesthesia for it. I apparently had celiac since birth but it was dormant or something.

[jessickascarling]

mmm i'm getting my wisdom teeth out in january too. but since i'm all ready gluten free i have nothing to worry about haha. i had an egd done with biopsy in the office (since i work there) and it actually wasn't THAT bad. my throat hurt like hell after and i was blah for the rest of the day but other than that it was better than being under sedation.

i would really recommend either getting the biopsy or doing the blood work after eating gluten for just one week. it REALLY sucks to go through (i felt like crap the entire time i was on my week of wheat) but it's worth it. you want to make sure you really do have celiac because that can actually be a pre-cursor for cancer if you continued to eat later down the road. and the ratio of blood work being negative to biopsies being positive is slim to none. if your blood work is negative, biopsy is almost never positive... like a 3% chance.

[Hex Kitten]

and the ratio of blood work being negative to biopsies being positive is slim to none. if your blood work is negative, biopsy is almost never positive... like a 3% chance.

Not sure what you mean, although I feel that if I wouldn't have been GF for 2+ weeks, my blood test might have come out positive. I only had symptoms for a month and a half before I narrowed it down, was GF on and off for a few weeks, then after I was satisfied that I had guessed right, I went all GF. I didn't time my doctor and allergist appointments right, since I wasn't sure what to even do at that point. By the time I got to the doctor, I had already seen a complete turnaround in the way my digestive tract felt and everything looked normal again. I ate some crackers that night and then had my blood drawn the next morning. When she read me the results, she said I had some of the markers or antibodies the test was looking for but "not quite enough to read positive".

Sure, I could have kept eating gluten and paid out the hiney to have the test done again or gone for the other test, but if you saw my Halloween pic, you might have noticed I'm pretty thin. I've been underweight all my life, and this ordeal put me in really bad shape. At that point last year, I just wanted to eat what didn't hurt and just start trying to stick some weight back on. :(

I understand it would be better to have a solid diagnosis or a solid "no", but I just can't do it right now. Also, one of my aunts developed cancer recently, so I might already have a genetic predisposition to that. To add to the fun, I had a kidney stone last October :mad:

Sorry for the long post...it's not even half the sh*t I went through.

[jessickascarling]

Not sure what you mean, although I feel that if I wouldn't have been GF for 2+ weeks, my blood test might have come out positive. I only had symptoms for a month and a half before I narrowed it down, was GF on and off for a few weeks, then after I was satisfied that I had guessed right, I went all GF. I didn't time my doctor and allergist appointments right, since I wasn't sure what to even do at that point. By the time I got to the doctor, I had already seen a complete turnaround in the way my digestive tract felt and everything looked normal again. I ate some crackers that night and then had my blood drawn the next morning. When she read me the results, she said I had some of the markers or antibodies the test was looking for but "not quite enough to read positive".


if you had some of the markers/antibodies then chances are your blood work would've come back positive. i didn't know you had some of the markers. a completely negative test within normal limits would indicate that 3% chance. i work at a gastro office so i see these kinds of tests all day long.

[Hex Kitten]

if you had some of the markers/antibodies then chances are your blood work would've come back positive. i didn't know you had some of the markers. a completely negative test within normal limits would indicate that 3% chance. i work at a gastro office so i see these kinds of tests all day long.

No problem. I've asked a couple members on celiac.com's forum and they agreed that it seems likely that I would have tested positive, but also agree that if I'm not comfortable with eating gluten for testing, that I shouldn't put my body through it. Maybe someday I will...or maybe with future advances they will come up with a different way to test other than the blood sample or biopsy

[arlia11]

If you feel better eating gluten free, then do it :) Pain isnt worth the tasty things (says the girl who would KILL for pizza hut breadsticks back then).