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Poll: How Were You Diagnosed? (Or Were You?)
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   67 members have voted

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

    • By a doctor - Positive Blood and Biopsy
    • By a doctor - Positive Blood only
    • By a doctor - Positive Biopsy only
    • By a doctor - Positive Genes only
    • By a doctor - Elimination Diet / Symptoms / Inconclusive Tests
    • By myself - Mail-in Genetic Test
    • By myself (elimination diet) - Tests were negative
    • By myself (elimination diet) - Never took tests
    • Currently awaiting tests results
  2. 2. What do you consider yourself?

    • Medically diagnosed Celiac
    • Self-diagnosed Celiac
    • Un-diagnosed Celiac
    • Non-Celiac but Gluten Sensitive
    • Someone who is just better off on a gluten free diet
    • A mystery of medical science

Please sign in or register to vote in this poll.

19 posts in this topic

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?

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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

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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...

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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.

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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)

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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.

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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.

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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:

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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.

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

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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.

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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

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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

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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 :-)

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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.

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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.
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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..........

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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.

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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.

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    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
    • It is the only thing you have eaten, so it can't be anything else?  I eat it with no issues so I am not sure how you can be certain that is the problem.  All I am saying is that its sort of "your word against mine and the company's word".  
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