Jump to content

Follow Us:  Twitter Facebook RSS Feed            




   arrowShare this page:
   

   Get email alerts  Subscribe to FREE Celiac.com email alerts

 
Celiac.com Sponsor:                                    


Photo
- - - - -

Poll: How Were You Diagnosed? (Or Were You?)


  • Please log in to reply

Poll: Poll: How Were You Diagnosed? (Or Were You?) (67 member(s) have cast votes)

How were you diagnosed? (Please chose your closed answer)

  1. By a doctor - Positive Blood and Biopsy (23 votes [32.39%] - View)

    Percentage of vote: 32.39%

  2. By a doctor - Positive Blood only (10 votes [14.08%] - View)

    Percentage of vote: 14.08%

  3. By a doctor - Positive Biopsy only (4 votes [5.63%] - View)

    Percentage of vote: 5.63%

  4. By a doctor - Positive Genes only (2 votes [2.82%] - View)

    Percentage of vote: 2.82%

  5. By a doctor - Elimination Diet / Symptoms / Inconclusive Tests (7 votes [9.86%] - View)

    Percentage of vote: 9.86%

  6. By myself - Mail-in Genetic Test (2 votes [2.82%] - View)

    Percentage of vote: 2.82%

  7. By myself (elimination diet) - Tests were negative (7 votes [9.86%] - View)

    Percentage of vote: 9.86%

  8. By myself (elimination diet) - Never took tests (12 votes [16.90%] - View)

    Percentage of vote: 16.90%

  9. Currently awaiting tests results (4 votes [5.63%] - View)

    Percentage of vote: 5.63%

What do you consider yourself?

  1. Medically diagnosed Celiac (34 votes [50.75%] - View)

    Percentage of vote: 50.75%

  2. Self-diagnosed Celiac (16 votes [23.88%] - View)

    Percentage of vote: 23.88%

  3. Un-diagnosed Celiac (4 votes [5.97%] - View)

    Percentage of vote: 5.97%

  4. Non-Celiac but Gluten Sensitive (8 votes [11.94%] - View)

    Percentage of vote: 11.94%

  5. Someone who is just better off on a gluten free diet (1 votes [1.49%] - View)

    Percentage of vote: 1.49%

  6. A mystery of medical science (4 votes [5.97%] - View)

    Percentage of vote: 5.97%

Vote Guests cannot vote

18 replies to this topic

#1 flutterby

 
flutterby

    Community Member

  • Advanced Members
  • PipPipPip
  • 36 posts
 

Posted 17 November 2010 - 12:15 PM

With so much talk about the big Diagnosis, I am curious what category people fall under here on the forums! Or, what category do your family members fall under?
  • 0
-Diagnosed by doctor "gluten intolerant" without any tests, based on symptoms in 2008. Gluten-free since then.
-Currently awaiting tests to see official diagnosis.

Celiac.com Sponsor:

#2 cassP

 
cassP

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 1,655 posts
 

Posted 17 November 2010 - 05:46 PM

i dont feel like any of the choices in the 1st question fit me.... ???

i self diagnosed myself with Celiac via: reaction to diet, positive Endomysial Antibody, and Genetic test.
then 2 weeks after that, i got DH.
then my Gi agreed with my self diagnosis.
no biopsy
  • 0
1986- Elevated Speckled ANA/no Lupus.negative Sjorgens
2008- AntiGliadin IGA/IGg~ Negative,TTG IGA/IGg~ Weak Positive, Endomysial Antibody~ Positive, IGA Deficient.
no biopsy (insurance denied)
6/2010- Enterolab Gene Test:
HLA-DQB1 Allele 1 0302
HLA-DQB1 Allele 2 0302
HLADQ 3,3 (subtype 8,8)
7/2010- 100% Gluten Free
8/2010- DH
10/2010-Hypothyroid dx-> 12/2010 Hashimoto's dx + 1/11- Graves dx :(

#3 wheeleezdryver

 
wheeleezdryver

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 197 posts
 

Posted 17 November 2010 - 08:41 PM

i am self- diagnosed.
i didn't know how to answer the 2nd question. i don't know if i have gluten intolerances or celiac (if i have celiac, it's not the classic sypmtoms, and probably not to the point it would show up on tests... that is to say, even if I wanted to try attempting to convince my dr to do the tests). i put that i'm a medical mystery... mainly because a dr (that had just graduated & was doing their residency) has said that of me before (which was kind of funny to me.... i came in complaining of the exact same Sleep Apnea symptoms as i had the year before when they 1st dx'd me w/ that condition... I *knew* i just neede my air pressure raised (why they could look at my info from the year before is beyond me. esp since i saw the same gal both times)...but yet they/ she had me do all the blood tests and stuff again (this was when she said 'you're just a medical mystery), which of course found nothing, before sending me for another sleep study... and of course, my symptoms resolved once my air pressure was raised... plus, for both the Sleep Apnea & the Gluten intolerance/ Celiac, i don't have the typical symptoms... so why not say i'm a medical mystery, 'cause to the Dr.s/ residents at the clinic i go to, i probably would be, just because i don't exhibit the classical symptoms for two of the conditions that i have...
  • 0
Becky (me)-35yo; hypothyroid 8yrs (symptoms at least 1 yr prior); Plantar Fasciitis (PF) (tendonitis in foot) 4 yrs; ovary & softball size cyst removed Feb 2008; Sleep Apnea 3yrs; Dec 2008- realized wheat affects hormones-- went semi- gluten-free (aka, gluten lite!). Interstitial Cystitis (IC, aka painful bladder syndrome) (self dx. controlled by diet- can't have acidic foods/ drinks). July 2010-- realized there was more going on, was going to do the sensitivity/ Celiac testing, decided it wasn't worth it! Am now truely learning to live the gluten- free lifestyle!
My DH-38 yo; born w/ Spastic cerebral palsy. legally blind, uses wheelchair. back surgery Aug 2007, has continued back troubles.

#4 T.H.

 
T.H.

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 1,816 posts
 

Posted 17 November 2010 - 09:30 PM

I was diagnosed by a blood test and biopsy, but like CassP, I consider myself self-diagnosed, doctor confirmed...although I was more self-checking-to-see-if-this-could-be-a-problem. I'd been sick for over 2 decades, celiac disease was never even considered by my doctors, even with my family history.

I'm the one who ended up asking for the tests, not them, and so I don't consider them responsible for my diagnosis.
  • 0

T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive


#5 Cypressmyst

 
Cypressmyst

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 211 posts
 

Posted 18 November 2010 - 12:33 AM

I had no choice but to put a mystery to medical science. My finger made me click the button!!!

I like being mysterious... :ph34r:

Don't know if I have Celiac but I do have other gluten induced auto-immune disorders and I feel like a new person off of that junk! O_o

I am self-diagnosed. 23 years of doctors couldn't do what the power of a bit of time on the good ol' internet could do. B)
  • 2
Grain Free
Casein Free
Soy Free
Refined Sugar Free
Preservative Free
Free Range
Free Willy
Freedom's just another word for nothin' left to lose...

...dang...there goes chocolate... :bawl:

#6 flutterby

 
flutterby

    Community Member

  • Advanced Members
  • PipPipPip
  • 36 posts
 

Posted 18 November 2010 - 06:25 AM

i dont feel like any of the choices in the 1st question fit me.... ???

i self diagnosed myself with Celiac via: reaction to diet, positive Endomysial Antibody, and Genetic test.
then 2 weeks after that, i got DH.
then my Gi agreed with my self diagnosis.
no biopsy


You know, I was thinking about putting a genetic test AND blood or biopsy option, but they only let us have so many. This is one thing I have noticed ... we are all so different! I feel very fortunate that I have had doctors that listened to me, possibly because they were at a loss for what to do.
  • 0
-Diagnosed by doctor "gluten intolerant" without any tests, based on symptoms in 2008. Gluten-free since then.
-Currently awaiting tests to see official diagnosis.

#7 flutterby

 
flutterby

    Community Member

  • Advanced Members
  • PipPipPip
  • 36 posts
 

Posted 18 November 2010 - 06:27 AM

I was diagnosed by a blood test and biopsy, but like CassP, I consider myself self-diagnosed, doctor confirmed...although I was more self-checking-to-see-if-this-could-be-a-problem. I'd been sick for over 2 decades, celiac disease was never even considered by my doctors, even with my family history.

I'm the one who ended up asking for the tests, not them, and so I don't consider them responsible for my diagnosis.


Thanks for sharing Shauna, and everyone else! This is one of the things that I was hoping to find out. It's an obvious problem that doctors don't know to look, or won't listen. With 1/133 people having Celiac, you would think it would be the FIRST THING they'd check.
  • 3
-Diagnosed by doctor "gluten intolerant" without any tests, based on symptoms in 2008. Gluten-free since then.
-Currently awaiting tests to see official diagnosis.

#8 cassP

 
cassP

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 1,655 posts
 

Posted 18 November 2010 - 08:28 AM

i don't have the typical symptoms... so why not say i'm a medical mystery, 'cause to the Dr.s/ residents at the clinic i go to, i probably would be, just because i don't exhibit the classical symptoms for two of the conditions that i have...


hey- that's why blood tests are a good idea- because so many Celiacs are asymptomatic. yet they can be inconclusive especially if you're gluten-free.
Dang... add sleep apnea to my Dad's long list of suspicious symptoms... i continue to urge him to get tested.. and he hasnt :angry:
  • 0
1986- Elevated Speckled ANA/no Lupus.negative Sjorgens
2008- AntiGliadin IGA/IGg~ Negative,TTG IGA/IGg~ Weak Positive, Endomysial Antibody~ Positive, IGA Deficient.
no biopsy (insurance denied)
6/2010- Enterolab Gene Test:
HLA-DQB1 Allele 1 0302
HLA-DQB1 Allele 2 0302
HLADQ 3,3 (subtype 8,8)
7/2010- 100% Gluten Free
8/2010- DH
10/2010-Hypothyroid dx-> 12/2010 Hashimoto's dx + 1/11- Graves dx :(

#9 i-geek

 
i-geek

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 366 posts
 

Posted 18 November 2010 - 08:49 AM

I had to self-diagnose. My doctor was convinced that I was simply under stress since I'm a student and couldn't possibly have celiac disease since "it's so rare!" and thus ran only one celiac test from the panel (TTG IgA). That came up negative, but 1) we don't know if I produce normal amounts of IgA or not since she didn't test for total IgA and 2) I was already on a very low gluten diet since that was the only way to make the headaches stop. She refused to do any more testing at that point and referred me to a nutritionist for an elimination diet, then told me to eat more dairy for calcium (after I'd already explained to her that even small amounts of it made me ill even with lactase supplements).

Needless to say, I put myself on the gluten-free diet, could actually feel my gut healing over several months and can now digest dairy along with a lot of other foods that previously gave me trouble. Considering that there's a strong prevalence of autoimmune disease on both sides of the family and that it often manifests in the early 30s (I was 31 when I went full-blown symptomatic 14 months ago) I believe that I do in fact have celiac disease and describe myself as such.
  • 1

#10 Mama Melissa

 
Mama Melissa

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 170 posts
 

Posted 18 November 2010 - 11:44 AM

i-geek can i ask how you felt your stomach heal???
  • 0
Melissa
9/10 Diagnosed celiac via bloodwork/endo
9/10 Gluten free

#11 enolah

 
enolah

    New Community Member

  • Advanced Members
  • Pip
  • 20 posts
 

Posted 18 November 2010 - 06:52 PM

I couldn't vote very well either--in my case for my daughter's diagnosis.

She had a DQ2 heterozygote genetic test plus all the symptoms of celiac along with abnormal fecal fat tests. Nonetheless her biopsy was normal, so she was diagnosed as possibly gluten intolerant based on her partial response to a gluten-free/dairy free diet. Nobody bothered to repeat her blood test (anti-endomysial antibody and total IgA) which were normal 2 years ago.
  • 0

#12 Lily127

 
Lily127

    Community Member

  • Advanced Members
  • PipPipPip
  • 38 posts
 

Posted 19 November 2010 - 05:55 PM

I got an Enterolabs stool test that came back slightly above normal which they said meant no more gluten. I had biopsies that were negative and blood was negative but when I took gluten out of my diet my stomach improved. My triglycerides are normal now as well for the first time in 12 years. I can't believe it
  • 2

#13 cahill

 
cahill

    Community Member

  • Advanced Members
  • PipPipPip
  • 45 posts
 

Posted 20 November 2010 - 05:39 AM

I had no choice but to put a mystery to medical science. My finger made me click the button!!!


:lol: I also had to ,just had to ,click on the mystery to medical science button :lol: after 40 some years of illness I was tested only because my daughter tested positive for celiacs ,,,even a year or so after my diagnoses I still feel like a MYSTERY TO MEDICAL SCIENCE :P
  • 2

#14 anabananakins

 
anabananakins

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 438 posts
 

Posted 20 November 2010 - 06:39 AM

I voted "by myself (elimination diet) - tests were negative" . But I wanted to add that my doctor supported me going gluten free as she she said she'd seen a lot of patients see improvement. She encouraged a grain free, dairy free diet but I haven't managed that yet :-)
  • 2

#15 sb2178

 
sb2178

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 793 posts
 

Posted 20 November 2010 - 10:21 AM

Yeah, not quite enough options.

-negative biopsy
-mixed bloodwork results
-genetics pending
-positive response to diet and awful, horrible response to a two meal gluten challenge

Medial record states non-celiac gluten sensitivity. If the genetics come back positive, I'm going to start calling it celiac, as in latent or imperfect biopsy.
  • 1

2/2010 Malabsorption becomes dramatically noticable
3/2010 Negative IgA EMA; negative IgA TTG
4/2010 Negative biopsy
5/2010 Elimination diet; symptoms begin to resolve on gluten-free diet round two (10 days)
5/2010 Diagnosed gluten sensitive based on weakly positive repeat IgA & IgG TTGs and dietary response; decline capsule endoscopy.

Now, what to do about my cookbook in progress? Make it gluten-free?




0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users

Celiac.com Sponsors: