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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. trents
      - trents replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified...
    2. trents
      - trents replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Disaccharide deficient, confusing biopsy results, no blood test

      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you...
    3. Paulaannefthimiou
      - Paulaannefthimiou posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

      Are Bobresmill gluten free oats ok for sensitive celiacs?
    4. jenniber
      - jenniber replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Disaccharide deficient, confusing biopsy results, no blood test

      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks! i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me b...
    5. trents
      - trents replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      High TTG-IgG and Normal TTG-IgA

      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,848
    • Most Online (within 30 mins)
      7,748
    L.Garcia24
    Newest Member
    L.Garcia24
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • trents
      Bob red mill gluten free oats

      By trents · Posted

      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      Disaccharide deficient, confusing biopsy results, no blood test

      By trents · Posted

      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Bob red mill gluten free oats

      By Paulaannefthimiou · Posted

      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      Disaccharide deficient, confusing biopsy results, no blood test

      By jenniber · Posted

      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      High TTG-IgG and Normal TTG-IgA

      By trents · Posted

      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
×
×
  • 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.