Celiac in Seattle's Blog

On April 18th, 2009, I attended a friend's wedding across the country.

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Halfway through the flight home on the 19th (a Sunday), I was miserable. I had stomach pains, and they seemed to be mostly in the lower right section of my abdomen.

I thought: Oh god, it's my appendix. Oh god, what if it ruptures? Is the change in air pressure when we land going to make things worse?

I was in pain, upset, and slowly freaking out more and more.

We landed about 2 or so hours later, and my hubby took me straight from the airport to the ER. Didn't even go home first.

They did blood tests, gave me pain killers, and eventually a cat scan of my stomach (which was less than fun).

After a few hours, the confused ER doctor told me it wasn't my appendix, and he didn't know what it was, and to make an appointment with the gynecologist. They gave me a prescription for 800mg Ibuprofen.

The pain was a pretty steady moderate pain for the next few days, with occasional spikes.

I saw the gynecologist that Wednesday, who did more tests, but saw nothing, and made a follow-up appointment for Friday. He said it could be a ruptured ovarian cyst, or endimetriosis.

Thursday afternoon, the pain was worse. It was up and down the entire right side of my abdomen. Convinced it was no longer gynecological, and was getting worse, I went back to the ER. Where they gave me more pain killers, and another cat scan to confirm it wasn't my appendix. The doctor still didn't know what was wrong with me, and when they told me they were sending me home, I asked with tears in my eyes, "so you're not going to figure out what's wrong with me?" The doctor assured me they'd done all the tests they could do in the ER, and they had ruled out anything immediately threatening.

He told me to follow up with a GI, and keep my follow-up with the Gyno. And gave me a prescription for Vicodin.

Friday morning I called the GI and was able to squeeze in an apt. before the Gyno. He said he wanted to do an ultra-sound of my gall bladder, and confirmed what the gyno thought about ovarian cysts, saying they'd shown up in my cat scan.

The gyno was just as helpful as before, and suggested if the test showed it wasn't my gall bladder, we do another test to rule out endimetriosis.

The next Tuesday I had the ultra-sound of my gall bladder. She didn't press hard, but it still hurt.

The sonogramologist told me towards the end of the test that she really wanted to diagnose it as gall stones, but she really didn't see any. So as she brought me back to the changing area to change out of my gown, she said something to the effect that I'd get the official results in a few days, but she didn't see anything, and "now they start with the *really* nasty tests." In my opinion, pretty high on the list of things not to say to someone who's sick, in pain, frustrated that nobody can figure out what it is, and scared. As soon as she closed my curtain I started crying.

When the nurse called a few days later to confirm that the test hadn't shown anything for my gall bladder I said, "Well what do I do now? I'm still in pain?"

At this point, the pain was still steady and constant (with occasional spikes) and I'd run out of prescription strength 800mg Ibuprofen, so I was taking 800mg of OTC Ibuprofen. Roughly every 4 hours. Sometimes switching to Vicodin at night so that i could sleep.

I scheduled a follow-up with the GI for that Monday or Tuesday. He pushed on my abdomen again (and it was still just as sensitive) and ordered more blood tests, and a urine test (which I managed to contaminate because I was having my period). One of the things he said he wanted to test for was Celiac Sprue, which was the first time I'd ever heard of this.

A few days later he calls back and says most of my tests are back, everything seemed normal except the urinalysis, which he wanted me to come back and repeat, and he was still waiting for the results of one last test: the Celiac Sprue. I still didn't think too much of it.

Sunday I tell the hubby that we need to start eating better, because we've both put on weight, and since we want to have kids some day we'll have to be eating better by the time we have them. He agrees, and we go grocery shopping for healthier foods. I noticed these Gluten-Free granola bars, and remark how I'm sure they taste awful. I remember that the doc said he was still waiting for those results, though, but somehow I'm not worried.

Monday afternoon the doctor calls, tells me my new urinalysis was fine... but the blood test did come back positive for Celiac Sprue (or "the Sprue"). He tells me he wants to schedule an upper endoscopy to be sure. I spend the few minutes in between the doc's call and the procedure scheduler's call crying. I spend the rest of the day mopey and upset and thinking about all the things I won't be able to eat. The thing that depresses me most is the prospect of not being able to eat my own Wedding cake (Hubby and I had a courthouse wedding mostly for us, and for insurance [just in the nick of time!] in March, but are having a big huge celebration wedding exactly one year later, next march).

Friday afternoon I have my endoscopy. Not eating was the hardest part about it. The anesthesia really knocked me for a loop. The doctor tells me he will call later next week with the results.

Tuesday, I get a call from the doc's office. I'm glad the results have come in so quickly! Nope, they just wanted to check on me after my procedure. Which was nice, but where are my freaking results?! The woman says she doesn't know when, but later this week, and I'll get a letter from the doctor.

A letter? A LETTER?!

Friday morning the doctor called (like he said he would) and confirms the diagnosis. I have Celiac disease.

Over the past two weeks I've tried to absorb as much about the disease, its symptoms, and exactly what I can and can't eat, as I can.

Looking back, I wonder how long I've had this disease?

In 2002 I had very bad digestive problems, almost everything I ate would upset my stomach, and give me diarrhea. I had a colonoscopy done (probably one of the youngest patients to have this procedure, I was only 19!) and they didn't find anything, and it eventually got better and we attributed it to stress. (BF at the time was graduating, blablablah) Especially since my mom's digestive system has always been sensitive and negatively affected by stress.

In the years since then, I would occasionally get diarrhea, but never thought too much of it, especially since it seemed to happen most when I would eat total crap (Taco Bell, McDonalds, etc.) I figured it was just naturally going to disagree with me. A few months ago my dearest husband asked me if I liked any food that doesn't make me poop. (He's a real charmer )

A few days after the doc called to say the blood test was positive, hubby was telling his coworkers that they might have finally figured out what was wrong with me (from what he says they're all very nice and were concerned for me) and he found out his one coworker's wife has the disease, and she gets migraines from eating gluten. I never thought myself overly-prone to migraines, but within a few months of moving in with the boy, I had two very close together. I thought it was just the change in location, and a different set of allergens.

Anyway, I just wonder if I've had this for a lot longer than I thought. I also wonder if my Mom has it (she had Chronic Fatigue syndrome, had her gall bladder out for pancreatitis, and has always had digestive problems). I wonder if my future children will have it.

But ultimately I am glad that I had a good doctor who diagnosed it rather quickly. From what I've read some people go for months, or even years undiagnosed.

So, that's my story, and I'm sticking to it.