Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Interested In Knowing How Long...

AmandaD

By AmandaD
in Coping with Celiac Disease

Recommended Posts

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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,015
    • Most Online (within 30 mins)
      7,748
    Rockette47
    Newest Member
    Rockette47
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Jmartes71
      Fighting for a name

      By Jmartes71 · Posted

      Im so frustrated and still getting the run around trying to reprove my celiac disease which my past primary ignored for 25 years.I understand that theres a ray of medical that doctors are limited too but not listening and telling the patient ( me) that im not as sensitive as I think and NOT celiac!Correction Mr white coat its not what I think but for cause and affect and past test that are not sticking in my medical records.I get sick violently with foods consumed, not eating the foods will show Im fabulous. After many blood draws and going through doctors I have the HLA- DQ2 positive which I read in a study that Iran conducted that the severity in celiac is in that gene.Im glutenfree and dealing with related issues which core issue of celiac isn't addressed. My skin, right eye, left leg diagestive issues affected. I have high blood pressure because im in pain.Im waisting my time on trying to reprove that Im celiac which is not a disease I want, but unfortunately have.It  has taken over my life personally and professionally. How do I stop getting medically gaslight and get the help needed to bounce back if I ever do bounce back to normal? I thought I was in good care with " celiac specialist " but in her eyes Im good.Im NOT.Sibo positive, IBS, Chronic Fatigue just to name a few and its all related to what I like to call a ghost disease ( celiac) since doctors don't seem to take it seriously. 
    • trents
      Celiac getting dentures

      By trents · Posted

      @Martha Mitchell, your reaction to the lens implant with gluten sounds like it could be an allergic reaction rather than a celiac reaction. It is possible for a celiac to be also allergic to gluten as it is a protein component in wheat, barley and rye.
    • JoJo0611
      Chances of being coeliac

      By JoJo0611 · Posted

      Thank you all. 
    • Martha Mitchell
      Celiac getting dentures

      By Martha Mitchell · Posted

      Scott I also have different symptoms than most people. It affects me bad. Stomach ache, headache, nauseous, heart racing, whole body shaking, can't walk then my throat starts to close. It attacks my nervous system. The only thing that saves me is a 1/2 of Xanax...it calms down my nervous system 
    • Martha Mitchell
      Celiac getting dentures

      By Martha Mitchell · Posted

      Scott Adams. I was dealing with a DR that didn't care about me being celiac. I repeatedly told him that I was celiac and is everything gluten-free. He put an acrylic lens from j&j. I called the company to ask about gluten and was told yes that the acrylic they use has gluten....then they back tracked immediately and stopped talking to me. The Dr didn't care that I was having issues. It took me 6 months and a lot of sickness to get it removed.... which can only happen within 6 months. The Dr that took it out said that it was fused and that's why I lost vision. If they would have removed it right away everything would be fine. He put in a silicone one that was gluten-free and I've had no issues at all in the other eye. Do not do acrylic!
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.