Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Recommended Posts

AmandaD Community Regular

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

Since January 2004 so coming up on 2 years here soon

jenvan Collaborator

November 2004...

jerseyangel Proficient

Since June 2, 2005.

frenchiemama Collaborator

April 21, 2005

fisharefriendsnotfood Apprentice

Since 1993 - I was two years old.

bmorrow Rookie

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

Aug 3, 2005 by GI

FaithInScienceToo Contributor

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

February 1989

VegasCeliacBuckeye Collaborator

November 1997

happygirl Collaborator

2004

judy05 Apprentice
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
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
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

March 2004 :D

par18 Apprentice

May 2005. Feel great after only 5 mo.

Tom

jams Explorer

December 2003

skoki-mom Explorer

6 weeks ago, Aug 25, 2005.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,176
    • Most Online (within 30 mins)
      7,748

    Ceekay
    Newest Member
    Ceekay
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Jane878
      By the time I was 5 I had my first auto0immune disorder, Migraine headaches, with auras to blind me, and vomiting, sensitivity to light and sound. I was 5 years old, and my stepfather would have pizza night, milling his own flour, making thick cheesy gluten pizza, that I would eat and the next day, I would have serious migraines, and my mother & stepfather did nothing about my medical problems. When I was 17 in my first year at college, I was diagnosed with my 2nd known auto-immune disorder, Meniere's disease. I was a elite athlete, a swimmer, and soccer player. And once again my parents didn't think anything of understanding why I had a disorder only older people get. Now after my mother passed from Alzheimer's disease she also suffered with living with gluten. She had a rash for 30 years that nobody could diagnose. She was itchy for 45 years total. My brother had a encapsulated virus explodes in his spleen and when this happened his entire intestines were covered with adhesions, scar tissue and he almost lost his life. He has 5 daughters, and when I finally was diagnosed after being pregnant and my body went into a cytokine storm, I lost my chance to have children, I ended up having Hashimoto's disease, Degenerative Disc disease, and my body started to shut down during my first trimester. I am 6ft tall and got down to 119lbs. My husband and I went to a special immunologist in Terrace, California. They took 17 vials of blood as we flew there for a day and returned home that evening. In 3 weeks, we had the answer, I have Celiac disease. Once this was known, only my father and husband made efforts to change their way of feeding me. At the family cabin, my stepfather & mother were more worried that I would ruin Thanksgiving Dinner. It wasn't until one of my cousins was diagnosed with Celiac disease. They finally looked into getting Gluten Free flour and taking measures to limit "gluten" in meals. He did nothing but ask for me to pay for my own food and wi-fi when I came to the cabin to stay after our house burned down. When he informed my mother, they proceeding to get into a physical fight and she ended up with a black eye. The is just more trauma for me. Sam had no interest in telling the truth about what he wanted. He lied to my mother that he had asked my husband if I could pay for "food" when he asked Geoffrey if I had money to pay for my wi-fi. My mother hates when he spends so much time on the computer so he lied and said I could pay for my own food. I will remind you I weighed 119lbs at this time. (At 6ft) that is a very sick looking person. Neither parent was worried about my weight, they just fought about how cheap my stepfather was. As my mother was diagnosed with Alzheimer's disease in 2014. He had her sign over the will to a trust and added his children. He had no testimonial capacity at the time, so she signed without proper papers. Making this Trust null and void. When I gave my brother my childhood home, my mother stated I would be getting an equal part of inheritance to the house on Race. It currently worth 2.0 million $. I got nothing, and my stepfather has since disowned me b/c of my claim and he knows that my mother would never have left it uneven between my biological brother and myself. She sat me and my husband down, as we lived at the Race Street house and treated and took care of it as our own. My brother took over b/c he was going through a horrific divorce and needed a home so he could get a better custody deal with his soon to be ex-wife who was a Assist DA for Denver. She used the girls against him, and he & I were the primary caregivers. We, Judd and I spent the most time with them pre the divorce. Once Judd moved into the house, he threw all of my mother, grandmother and my family heirlooms out to the Goodwill. Nobody told my mother about this as she was going through cancer treatment and had Alzheimer's disease in her mother and her sister. My stepfather and biological brother took advantage of this matter, as I called a "family council" that my brother just never could make it to at the last moment. All of the furnishing, kitchen ware, everything was in the house my brother just moved into. He had had 2 weddings, I chose to elope b/c my stepfather ruined my brother's first wedding by talking about his relationship with my brother in front of my dad and his entire family, insulting him and having my grandfather leave the ceremony. It was a disaster. My stepfather just plays dumb and blames my father for the slight. I was the only child not to have a wedding. So, my mother and stepfather never had to pay for a thing. My mother had had an agreement with my father he'd pay for college and all medical issues with their kids, myself and Judd. So truly my mother never had to pay for anything big for me in her entire life. I am looking for anyone that has had a similar story, where they grew up in a household that had a baker that regularly milled flour and ate gluten. What happened to you? DId you suffer from different auto-immune diseases b/c of living with a baker using "gluten" Please let me know. I have been looking into legal ways to get my stepfather to give me what my mother had promised, and he erased. Thank you for listening to my story. Jane Donnelly  
    • trents
      Possibly gluten withdrawal. Lot's of info on the internet about it. Somewhat controversial but apparently gluten plugs into the same neuro sensors as opiates do and some people get a similar type withdrawal as they do when quitting opiates. Another issue is that gluten-free facsimile flours are not fortified with vitamins and minerals as is wheat flour (in the U.S. at least) so when the switch is made to gluten-free facsimile foods, especially if a lot of processed gluten-free foods are being used as substitutes, vitamin and mineral deficiencies can result. There is also the possibility that she has picked up a virus or some but that is totally unrelated to going gluten-free.
    • Sheila mellors
      I asked about the new fruit and nut one and the Dietician said yes I could eat it safely. Hooe this helps
    • Heatherisle
      Daughter has started gluten free diet this week as per gastroenterologists suggestion. However says she feels more tired and like she’s been hit by a train. I suggested it could be the change to gluten free or just stress from the endoscopy last week catching up with her. Just wondering if feeling more tired is a normal reaction at this stage. I suppose it’s possible some gluten might have been present without realising. Have tried to reassure her it’s not going to resolve symptoms overnight
    • DAR girl
      Looking for help sourcing gluten-free products that do not contain potato or corn derived ingredients. I have other autoimmune conditions (Psoriatic Arthritis and Sjogrens) so I’m looking for prepared foods as I have fatigue and cannot devote a lot of time to baking my own treats. 
×
×
  • Create New...