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Interested In Knowing How Long...

AmandaD

By AmandaD
in Coping with Celiac Disease

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AmandaD Community Regular
AmandaD
Posted

Hi - I was wondering if some of you could tell me how many months or years you've been formally diagnosed with Celiac?

Just curious! Amanda

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KaitiUSA Enthusiast
KaitiUSA
Posted

Since January 2004 so coming up on 2 years here soon

jenvan Collaborator
jenvan
Posted

November 2004...

jerseyangel Proficient
jerseyangel
Posted

Since June 2, 2005.

frenchiemama Collaborator
frenchiemama
Posted

April 21, 2005

fisharefriendsnotfood Apprentice
fisharefriendsnotfood
Posted

Since 1993 - I was two years old.

bmorrow Rookie
bmorrow
Posted

I was diagnosed by EnteroLab for gluten sensitivity March 2004, and then diagnosed by GI for Celiac January 2005.

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laurelfla Enthusiast
laurelfla
Posted

Aug 3, 2005 by GI

FaithInScienceToo Contributor
FaithInScienceToo
Posted

Back in late December '04.....

3 years or so prior, I was told to go 'gluten-free' by an Nutrition-oriented Internal Medicine MD, after he learned that I had been priviously diagnosed with Fibromyalgia.

Unfortunately, he never mentioned Celiac Disease, never did a blood test for it, and did bizarre 'freaky' tests...like ones where I had to hold glass jars of hoemopathic things and he tested to see my arm strength...then he tried to sell to me insanely priced bizarre homeopathic 'remedies'....I thought he was a crook, or a nut....so I did not take his advice to go gluten-free....

An aside...I also thought that he was crazy to think someone could give up wheat in this society... (now I know how VERY do-able it is...)....

ANYWAY....At the end of last calendar year, I was so sick, I HAD to find out what was 'wrong' with me....I promised myself that another year would NOT pass without my trying my best to find out what was wrong...

I recalled his telling me to 'go gluten-free,' so I decided to look up 'gluten' on the Net....because I had become 'a surfer' by then...

After finding out quickly that Gluten had been linked to ALL of my health problems...I went gluten-free on my own, thinking that :

1) I would never agree to an endoscopy anyway, if I responded to the gluten-free diet (I could not 'tolerate' the thought of an endoscopy at that point in time, since I was so sick AND since I had already had way too many invasive tests done),

and I thought that

2) IF gluten was 'poisoning me,' I knew that I HAD to stop comsuming it immediately...and that I would never agree to consume it 'on purpose' - for ANY tests!

I found my way to this site, studied about how to go gluten-free, and vowed to being the 'diet' on 1/1/05, to find out if it helped....which I did.

I felt 10,000 X's better within 2 weeks gluten-free...., and cried with joy.

so I actually 'self-diagnosed' in mid-January '05

************************************

Officially Diagnosed "Celiac Sprue" by my Gastroenterologist, April 6, 2005:

He wrote "Celiac Sprue" as my diagnosis in my file (told to me by his secretary), but told me, "Probable Celiac Sprue" -

The story about that...

After being referred by my family physician's nurse practitioner to the GI for a painful external hemmorrhoid (which I now think I may have gotten from less fiber in my diet post going gluten-free)...

I told him about my past diagnoses and that I went gluten-free on my own on 1/1/05, and about how I had read on here that it was too late for him to test me for "an official diagnosis of celiac disease"....

He said it was not too late to test me for antibodies, as they take a while to leave the body post going gluten-free, so he did "A celiac blood panel" on me....

Blood tests performed by GI doc at 53 days post gluten-free( on 2/22/05):

IgA = 29 (30+ = positive when ingesting gluten...

'29 = positive for Celiac Disease at 53 days post gluten-free' , via GI doc]

IgG = 6.8, also at 53 days post going gluten-free

I had Biopsies done via endoscopy and colonoscopy on 3/11/05, because my GI wanted to sure it was 'only celiac disease':

No current damage found via biopsy, at 70 days post gluten-free diet.

I shared with him my Enterolab results also when I went to find out my blood tests results. He asked to put them in my file :-)

GI doc said to keep to gluten-free diet and come back to get re-tested for "Celiac blood panel" in 6 months time (Oct '05), to be sure I am staying gluten-free, and that I would need to get re-tested routinely now.

***********************************

Also diagnosed by Enterolab 2/25/05, 56 days post gluten-free diet:

Positive for gene DQ8, via cheek-cell testing

and positive for sensitivity and antibodies to gluten, via stool sample test

plus I have 'detectable sensitivity to casein.'

Malabsorption score at 56 days post gluten-free was 286

(300-500 = mild malabsorption when ingesting gluten)

--------------------------------------------------------------------------------------------

Sorry to have been SO thorough about all of that, but I wanted to make sure you knew the path it took for me to get diagnosed properly....

Of course, I have not even mentioned anything about the 20 years of mis-diagnoses, symptoms, horrid testing, and 2 surgeries that 'happened to me' before learning that

"I am a Celiac"....

That's not a pleasant memory. Yet, I am grateful to be where I am today...

gluten-free and healthy!

Gina

Guest Viola
Guest Viola
Posted

February 1989

VegasCeliacBuckeye Collaborator
VegasCeliacBuckeye
Posted

November 1997

happygirl Collaborator
happygirl
Posted

2004

judy05 Apprentice
judy05
Posted
Hi - I was wondering if some of you could tell me how many months or years you've been formally diagnosed with Celiac?

Just curious!  Amanda

<{POST_SNAPBACK}>

Novemer 2003, never formally diagnosed, GI won't give me a formal diagnosis since i don't carry the gene! Almost 2 years gluten-free and CF.

judy05 Apprentice
judy05
Posted
Hi - I was wondering if some of you could tell me how many months or years you've been formally diagnosed with Celiac?

Just curious!  Amanda

<{POST_SNAPBACK}>

Novemer 2003, never formally diagnosed, GI won't give me a formal diagnosis since i don't carry the gene! Almost 2 years gluten-free and CF.

tarnalberry Community Regular
tarnalberry
Posted
Hi - I was wondering if some of you could tell me how many months or years you've been formally diagnosed with Celiac?

Just curious!  Amanda

<{POST_SNAPBACK}>

"Formally" is a loose term in my case, but it's been just over two years now.

Carriefaith Enthusiast
Carriefaith
Posted

March 2004 :D

par18 Apprentice
par18
Posted

May 2005. Feel great after only 5 mo.

Tom

jams Explorer
jams
Posted

December 2003

skoki-mom Explorer
skoki-mom
Posted

6 weeks ago, Aug 25, 2005.

Archived

This topic is now archived and is closed to further replies.

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