Even though my biopsy tested positive for celiac disease, I was told I still needed a blood test to confirm it. It was Friday and it was too late to go get a blood test that day so I went the following Monday. I used to be terrified of blood tests because I literally have one good vein in my right arm from which to draw blood. However, it hasn’t been as big of an issue since I’ve been with Kaiser because they have a blood lab with people who do this all day, so they are very good at what they do. I got a quick and fairly painless blood test and waited for the results.

The next day, I checked the app and saw results for a basic red and white blood cell count, but there was no mention of the celiac test. So I called to find out if they forgot to run the other test. I was able to speak to a very nice doctor who explained that the other test took longer to run and would show up in a day or two. But she did question why they needed that before treating me because the biopsy is typically considered the gold standard when it comes to diagnosing celiac disease.

She also said that I needed B-12 shots and an iron infusion because my iron levels were still very low. Great, something that can help now instead of in six months!

Then I get a message that they need more blood. They forgot to test for iron and other vitamin levels. Awesome. So I go back in again on Friday and they take five more vials. FIVE! Seriously, why do they need so much? And screw Elizabeth Holmes and her sham of a company Theranos for making us believe that all these blood tests could be run off a few drops of blood.

I got some results back and then on Monday some poor guy had to call me and tell me that one of the blood tests couldn’t be run because the blood somehow clotted and they needed me to go in and get ANOTHER blood test. Seriously, they should just install a blood tap in my neck at this point. So I go back in that day and they take even more blood. By the time I get to finally being approved for the iron infusion, I won’t have any working veins left.�

So needles have become my new reality, aside from the crappy food.

 

 

My phone rang. I looked at the caller ID and it said Kaiser Permanente. Good, I thought, my test results were finally in. I had gotten a colonoscopy and endoscopy done earlier in the week and had been waiting to get the results.�

After answering the precursory security questions, a very nice nurse simply said, “The test results from your endoscopy are in. Your biopsy tested positive for celiac disease.”

“Motherfuck.” Yeah, not my most elegant response ever.

“I know it sounds bad, but you really will start to feel better once you start a gluten-free diet,” she said, truly sounding sympathetic. I’m sure it’s not the first time she has had to tell someone this.

“How long will that take?”

“It’s hard to say, but it could take six months to two years to heal the damage in your small intestines,” she said.�

“Fuck!” Only this time, I had the self-control to just think it. “So I get to continue to feel like crap while completely changing my diet? Are there any meds for this?”

“No, just the gluten-free diet. You should schedule an appointment with a dietitian and they can help you with that. Also, we need you to come in and get a blood test to confirm the celiac diagnosis.”

“Thank you.”

And with that, we were done. Literally, a two-minute phone call that completely altered my world. WTF? I was seriously not expecting that diagnosis. I didn’t even know it was on the table. I was told I might have an ulcer or a tear in my intestines somewhere that was making it hard for my body to absorb iron and thus causing my anemia, but I hadn’t even thought about celiac disease because my doctor never mentioned it. Never.

And I knew what celiac disease was. I had a work friend who had it and remember how hard it was for her and how she would occasionally end up in the ER after a work event where she was promised a gluten-free meal.

After the initial bout of swearing that probably scared my dog, I did take a moment to breathe and remind myself that she could have been calling to tell me that I had colon cancer or Crohn’s Disease or any number of more serious conditions. Putting it in context helped ease the shock of it. But it still sucked.

Eventually, I naively thought, “Well, I don’t really eat much bread or pasta so I should be able to manage this.”

How wrong I was.