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
      131,945
    • Most Online (within 30 mins)
      7,748
    Miyasato
    Newest Member
    Miyasato
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

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



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Mari
      My only proof

      By Mari · Posted

      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but another, tissue transaminasewas normal. Itdid show I was  allergic to cows milk and I think hot peppers. I immediately went gluten free but did not go in for an endoscopy. I found an online lab online that would do the test to show if I had a main celiac gene (enterolab.com). The report came back that I had inherited a main celiac gene, DQ8, from one parent and a D!6 from the other parent. That combination is knows to sym[tons of celiac worse than just inheriting one main celiac gene. With my version of celiac disease I was mostly constipated but after going gluten-free I would have diarrhea the few times I was glutened either by cross contamination or eating some food containing gluten. I have stayed gluten-free for almost 20 years now and knew within a few days that it was right for me although my recovery has been slow.   When I go to see a  medical provide and tell them I have celiacs they don't believe me. The same when I tell them that I carry a main celiac gene, the DQ8. It is only when I tell them that I get diarrhea after eating gluten that they realize that I might have celiac disease. Then they will order th Vitamin B12 and D3 that I need to monitor as my B12 levels can go down very fast if I'm not taking enough of it. Medical providers haven't been much help in my recovery. They are not well trained in this problem. I really hope this helps ypu. Take care.      
    • knitty kitty
      Does anyone here also have Afib

      By knitty kitty · Posted

      Fascinating.
    • DebJ14
      Does anyone here also have Afib

      By DebJ14 · Posted

    • knitty kitty
      Does anyone here also have Afib

      By knitty kitty · Posted

      @DebJ14, You said "husband has low platelets, bruises easily and gets bloody noses just from Fish Oil  He suggested he take Black Cumin Seed Oil for inflammation.  He discovered that by taking the Black Seed oil, he can eat carbs and not go into A Fib, since it does such a good job of reducing inflammation."   I don't think black seed oil is lowering inflammation.  It's lowering blood glucose levels. Black cumin seed lowers blood glucose levels.  There's a connection between high blood glucose levels and Afib.    Has your husband been checked for diabetes?   Must Read: Associations of high-normal blood pressure and impaired fasting glucose with atrial fibrillation https://pubmed.ncbi.nlm.nih.gov/36750354/  
    • knitty kitty
      4.5 years into diagnosis, eating gluten-free and still struggling: would love support, tips, & stories

      By knitty kitty · Posted

      Healthy Omega Three fats.  Olive oil or flaxseed oil, oily fish, fatty cuts of meat.   Our bodies run much better on burning fats as fuel.  Diets based on carbohydrates require an increased amount of thiamine to process the carbs into fuel for the body.  Unfortunately, thiamine mononitrate is used to enrich rice.  Thiamine mononitrate is relatively unusable in the body.  So a high carb diet can further decrease thiamine stores in the body.  Insufficient thiamine in the body causes the body to burn body fat and muscle for fuel, so weight loss and muscle wasting occurs.  Those extra carbohydrates can lead to Candida (often confused with mold toxicity) and SIBO (Small Intestinal Bacterial Overgrowth).   Losing weight quickly is a symptom of thiamine insufficiency.  Muscle wasting is a symptom of thiamine insufficiency.  I lost sixty pounds in a month.   Having difficulty putting weight on and keeping it on is a symptom of thiamine insufficiency.   The AIP diet works because it eliminates all grains and grasses, rice, quinoa, all the carbs.  Without the carbs, the Candida and SIBO get starved and die off.  Easy way to change your microbiome is to change what you feed it.  With the rowdy neighbors gone, the intestine can heal and absorb more nutrients.   Supplementing with essential vitamins and minerals is beneficial.  Talk to your doctor and nutritionist.  Benfotiamine is a form of thiamine that promotes intestinal healing.  The eight B vitamins are water soluble, so if you don't need them, they can be gotten rid of easily.   Night shades are excluded on the AIP diet.  Potatoes, tomatoes, peppers and eggplant are not allowed on the AIP diet.  They contain alkaloids that promote "a leaky gut".  Benfotiamine can help here. Sweet potatoes are avoided because they contain thiaminases, chemicals that break thiamine so that the body cannot use it.   The AIP diet has helped me.
×
×
  • 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.