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

[flutterby]

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?

[cassP]

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

[wheeleezdryver]

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...

[T.H.]

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.

[Cypressmyst]

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

I like being mysterious...

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.

[flutterby]

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.

[flutterby]

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.

[cassP]

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

[i-geek]

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.

[Mama Melissa]

i-geek can i ask how you felt your stomach heal???

[enolah]

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.

[Lily127]

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

[cahill]

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

I also had to ,just had to ,click on the mystery to medical science button 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

[anabananakins]

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 :-)

[sb2178]

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.

[Geri02]

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...

I am also mostly self diagnosed. I never considered myself to have celiac. But after being gluten free since August 2010 and a positive IgG test I react to cross contamination with acne type stuff on my face, bloating, constipation, yellow colored BMs, joint pain, headaches. So I'm guessing that I might just be a celiac. I went to a family wedding today and had only a bottle of water. I guess time will tell. I'm not willing to have a biopsy since I first went to a GI specialist and he blew it off as IBS.

[cap6]

I voted by dr although all my tests were negative. I was so darn sick that I really did stop eating - it just hurt so much - and lost 30 lbs in 2 months time. Was living on a bite of soup, rice or chicken (with a tad of cream of chicken soup over the top) through the day so of course all the numerous blood tests came back negative. All the symptoms were there so dr put me gluten free and within a week I was doing better. Not enough gluten to show on any tests and just enough to still make me sick.

Although my Mom is gone now as we look back we honestly believe that she was also Celiac. All of her symptoms and other related diseases just point to it. Also I believe she had the DH. Her elbow/knee rashes would just never clear. Now I worry about my kids..........

[flutterby]

I voted by dr although all my tests were negative. I was so darn sick that I really did stop eating - it just hurt so much - and lost 30 lbs in 2 months time. Was living on a bite of soup, rice or chicken (with a tad of cream of chicken soup over the top) through the day so of course all the numerous blood tests came back negative. All the symptoms were there so dr put me gluten free and within a week I was doing better. Not enough gluten to show on any tests and just enough to still make me sick.

That's exactly what I went through! My doctor was at a loss, and either didn't know to test or thought that it wasn't necesary since I improved on the diet. Two years later I am seeing a specialist, who wants to test and make sure and rule out anything else. But I absolutely failed trying to introduce gluten into my diet again, so that's as much proof as I need.

[cap6]

I was considering doing the gluten challenge so that I could get the biopsy and have an absolute answer but my partner says no. It's just not worth the time it takes to eat the gluten, have enough in your system, be so sick and then the months it takes to get well again. Not worth it. An official diagnosis just isn't that important.