How Did You Get Your Diagnosis?

[emcmaster]

I'm curious to see how many of you were diagnosed by a doctor after tests and how many of you figured it out on your own.

I saw dozens of specialists over the past 2.5 years and not only did no one suggest it might be celiac, but I even had a doctor tell me there was no way I had it when I suggested the possibility!

It's a gross understatement to say I'm angry with those doctors. I felt miserable for over 2 years and spent thousands upon thousands of dollars in medical bills and tests... all so that I could diagnose myself.

Doctors.

[wolfie]

Well, I have complained on & off of stomach issues (occasional D, C, excessive gas, cramping) since DS was born 10 years ago. Most drs blew me off or said I had some food intolerance and to stay away from what was bothering me. Some things I cound narrow down, some things I couldn't. Finally I saw a nutritionist this year for help with recovering from anorexia and she asked if I had ever been tested for Celiac. My PCP then tested me and my antigliadin IgG came back positive, antigliadin IgA and ttg IgA were normal. She told me to go gluten-free. I did and then saw a GI. GI wanted to scope & biopsy, but I was feeling so good on the gluten-free diet that I didn't do it. There was no way I was going back to eating gluten.....at the very least I am gluten intolerant. Then I ran into the issues with testing for my kids. Ped didn't want to test them unless I was biopsy diagnosed. I pressured him for 6 months, even considered a gluten challenge. I ate 1 triscuit to see if I could tolerate a gluten challenge and I was sick. I told the Ped that and he finally tested my son. His ttg came back very high and he had an endoscopy and biopsy last Fri.

So, my dietary response is enough for me. I don't care what you call it, I can't eat gluten.

[StrongerToday]

I went to my dr. complaining of constant D, massive abdominal pain (like swallowing glass) and always feeling sick. The first thing out of his mouth was "it's probably a food intolerence - cut out gluten and dairy and come back in six weeks". I'm all NOOOOOOOOOOOO... take my gallbladder, or something... I mean, gosh, no dairy He did run bloods tests that came back normal, but I have had positive dietary response.

I did introduce wheat again after six weeks and spent the next two days very sick. Haven't tried it since! I have slowly introduced some dairy and seem to be ok (please God!!) - but very small amounts and not close together.

[CarlaB]

I figured out on my own that wheat made me sick and didn't eat if for three years. I got lazy and started eating it a couple times per week, got really sick this time, went to the doc and asked for a celiac test. It came back negative. I did a six week gluten challenge about 9 months later, after being gluten free during that time (wasn't aware of hidden gluten so still sick). Biopsy came back normal, but I don't think I ate enough gluten for long enough. I wasn't eating it daily, maybe every other day. I ended up being tested by Enterolab just for my own peace of mind after three months gluten-free. I guess I just wanted someone to tell me I wasn't crazy. Okay, they didn't tell me that, but they did tell me I was definately gluten intolerant and having an autoimmune response.

[AndreaB]

I had an allergy test done to see what could be causing the problems with my infant son. He had broken out with eczema. Came back allergic to wheat/gluten/gliadin/soy/dairy among other things. I decided to run the family (except infant) through enterolab and discovered that 3 out of 4 of us had an active intolerance and my oldest son had mild malabsorption. My husband and I are also soy intolerant. No one is intolerant to dairy but it's still an allergy for me although mild. We all have two genes that either predispose to celiac or gluten sensitivity/intolerance. We are those that didn't have any symptoms although now my daughter tends to get much looser bms if she gets glutened. She ate a few bites of a roll this weekend before I caught her.

[Carriefaith]

I was diagnosed after a positive biopsy and blood test.

[Cornhusker]

Primary care doctor had me figured for IBS, depression, and anxiety. She said she'd refer me to any specialist I wanted to run whatever tests necessary so that I'd accept her diagnosis.

Spent about 5 minutes with a gastro-doc who asked me a handful of questions. I told him recurring D and 20 pounds lost in the last month and a half but with eating and appetite. He set up a colonoscopy and endo (both w/biopsy) for the following week. Scopes came back visually normal (I celebrated by eating a pizza!) but biopsies pending. A couple days later...celiac.

All this has happen to me in the span of roughly 2 months. I've always been thin and have had sporadic IBS-like D for the past 6 years, but nothing I couldn't deal with. The sudden weight-loss scared the crap out of me.

Honestly I'm thankful for my gastro-doc. Not the most personal guy, but I don't need a doc to hold my hand, just figure this out. And he did. Sometimes I think we paint the medical profession with too big a brush. There are good ones and bad ones, just like every profession.

I'm thankful for the positive biopsy. I'll never question whether it's intolerance or whatever. I have it. It doesn't go away. But it can be dealt with.

[Daxin]

Still waiting for the biopsy, but all the immuno globulin tests and gliading tests came back SCREAMING positive (my doctors words not mine)

[Guhlia]

I was diagnosed by my gastro after a week in the hospital, dying. I was so weak and sickly that I couldn't even get myself out of bed. I was on morphine, vicodin, visteral, and xanax to manage the pain. It was a horrible experience. I really thought I was just going to die. They did every test they could think of and FINALLY they did the one test in the Celiac panel and it came back a strong positive. He said they were the highest numbers that he had ever seen. They sent me home (with no real directions) to be gluten free. I got better for the most part very quickly, but, like most newbies, I doubted the diagnosis. I had the Celiac panel run on me after a short gluten challenge and it came back negative, so the doctors say that I don't have Celiac. Ha. Funny. I am still 100% gluten free and my daughter is too (just in case since it's easier to keep her gluten free than it is to have her eating gluten). I used to get glutened every single time she would eat gluten. It was horrible. We can't figure out why either. I guess she spreads her saliva around after eating??? Anyway, I consider myself a Celiac, but my doctors don't. This is nice for insurance purposes since we have private insurance.

[Vladimir Gluten]

I always loved pasta. I started eating more whole-wheat pasta and whole wheat breads (because it was better for me) and the afternoon headaches began. I went back through my past experiences and I remember that I had similar headaches when I would eat whole wheat bread, and sometimes regular bread or pizza.

I was tested for wheat allergy and the test came back negative.

I switched to a gluten-free diet, after 3+weeks the headaches are gone; I am thinking more clearly; and I am dreaming much better (wake up refreshed).

So I feel better and that's my story. Gluten-free is working for me.

Pass the corn chips.

[jabberwife]

I didn't officially click on my vote, because I"m waiting on Enterolab results. Funny thing...I remember back being a skinny skinny kid, skinny teen, with problems fainting and dizziness if I didn't eat RIGHT on schedule (but never had hypoglycemia or diabetes...was checked). Now I'm an adult who has to watch her weight like everyone else. Starting having major D problems about 2 years ago, (combo of stressful home and work conditions) and inquired with my doctors about my problems. Diagnosed with IBS, but none of the meds worked. They did blood tests for everything including celiac, came back ok. Did occult blood stool test, ok there too. Got better (only had gas problems, really, not D like before) after quitting my job, home life settled, less stressful job. But had bad itching with no associated rash. Went to doc again, he said "possible food allergy." Got me thinking...narrowed it down to lactose or gluten. My dad is celiac. So.....went gluten free, on my 3rd week. Did a gluten challenge and 3 days later, unimaginable D. Well...called back my docs office to get dates on when blood tests were taken. Apparently they lied....NEVER did a celiac blood test!!! They tested my thyroid instead.

Anyway, long story short, I suppose I'm dietary response, self diagnosed, until Enterolab comes back. And guess who's face those results will be waved in? Doc, get ready!

The doctors are still learning. Hopefully the next batch that come out of med school will have a better understanding...as gluten intolerance becomes more public. We can hope!

[majicbunnies]

I was hospitalized for Encephylitis (sp?) when I was about nine years old. I couldn't eat for two weeks because everything I ate came back up. I was told when I was released that I'd probably have symptoms from it for the rest of my life (stomach aches, dizziness...). After a few years, I got tired of all the stomach aches I got whenever I ate and figured they shouldn't be that bad and I shouldn't feel that crappy, so I went to doctors over and over and they said I was probably lactose intolerant. For about another year I avoided lactose, but still had stomach aches often. About a year ago, I went to a doctor in a town not too far away from where I live, and they did a blood test and found out I was gluten intolerant (never had the "big" test for celiac..something where they look in your stomach??). I still get stomach aches if I have too much lactose, so I don't eat/drink too much of it. I feel a lot better now. A little while ago, I got tired of not being able to eat gluten/wheat so I had an entire day of pigging out on gluten/wheat containing foods. For about three days after that, I felt crappy and had sharp glass like pains in my stomach, mostly when I got hungry. Never doing that again...

[queenofhearts]

I was diagnosed by biopsy, but only after being misdiagnosed for years. Actually I think I've had it since childhood, as I had some symptoms even then-- chronic headaches, "delicate" stomach, extreme thinness-- but in recent years I'd added chronic anemia, mild depression, joint pain, recurrent diarrhea, still without being diagnosed. Finally I developed liver troubles & that sent me to a specialist who figured it out. Thank you Dr. Kohagen!

Leah