Getting a Celiac Disease Diagnosis Sucks

“Congratulations!  You’re the winner of an incurable, lifelong, invisible autoimmune disease that will complicate your life!”

Celiac vs Normal

Yeah, that’s pretty much what I heard when I got my diagnosis of Celiac Disease.  Actually, I wasn’t the only one that heard it:   the phone call from the gastroenterologist’s office came through the hands-free speaker of my car, after I’d just finished sharing a pizza for lunch with my co-worker.  I was just about to drive us back to the office. She looked at me, worried, as she heard me peppering the the receptionist, who was asking me to make an appointment because “the doctor wanted to speak to me”, with questions.  I was being uncharacteristically obnoxious. When is the doctor wanting to see you in person EVER good news?

After me trying to guess what could possibly have gone wrong with my colonoscopy (hey, the doctor told me when I woke up that my colon was as clean as a whistle!  No mammals eaten since 1993, baby!), and the receptionist confirming that no, I didn’t have Barrett’s Esophagus (a bizarre pre-occupation of mine because of my then-crazy acid reflux; it’s normally found in men over 70 that are heavy smokers and huge drinkers), the receptionist suddenly blurted out in frustration “Well, you know that you have Celiac Disease, right?”

Me:  “No, I don’t know.  And I don’t have Celiac Disease.  Celiacs are those annoying gluten-free people, and gluten is my friend.  I love gluten.  In fact, I’ve just eaten a pizza for lunch and I feel fine.”

Receptionist:  “You have Celiac Disease.  I’m holding your test results.  You need to come in and speak with the doctor.”

Me:  “They have obviously mixed up the tests, because I don’t have Celiac Disease.  You’ve got the wrong person.”

Receptionist:  “Are you Louise?”

Me:  “Yes.”

Receptionist: “There’s been no mistake.  I also have your colonoscopy results.  You requested two scopes done at the same time, right?  You need to come in and speak with the doctor.”

The gastroenterologist got a visit from the most miserable version of me possible.

Doctor:  “So, your tests show that you have Celiac Disease.  The receptionist says that you didn’t know that you had it.  So you need to eat a gluten free diet and we’ll test you in six months.”

Me:  “I don’t have Celiac Disease.  You’ve obviously mixed my tests up with someone else’s.  The day your receptionist called me, I ate a pizza for lunch and was fine.  No problems since whatsoever.  So the test you got back from the lab was not mine.”

Doctor:  “I have your results here.  You got the worst possible result:  Level 4 – total villous atrophy.”  He spun the computer screen for me to see. ” You need to go on the gluten-free diet immediately.”

Me: “I want another test. Maybe I have something else that looks like Celiac but isn’t.”

Doctor (exasperatedly):  “I’ll have you tested for Crohn’s Disease. But you have Celiac.”

My blood test results came back.  Since I’d already had the gold standard of Celiac tests, the duodenal biopsy (when the Doctor had originally put the scope down my throat to check out the acid reflux situation, he saw the flattened villi on my duodenum, and took a biopsy), the blood test was just a confirmation….with a little extra information.

Here’s how tTG (IgA-Human Tissue Transglutaminase) blood test results go in Canada:

< 20 is normal

>20-30 is a weak positive

>200 is most definitely, unquestionably Celiac.  Like, really bad.

My number?  4,965.  I was the worst number that had ever been through his office in his entire decades-long practice.  Not quite the place that I wanted to be an overachiever.  You may be wondering what when through my head when I was told, as you might remember what you thought when you got your diagnosis.  What went through my head was:  Oreos, Auntie Annie’s pretzels, Tim Tams, Burger King Veggie Burgers, and Chinese food wheat noodle dishes.  All the glutinous delights in my life, never to be tasted by me again.

He handed me a book.  “Do you want this guide to gluten-free eating?”

I was about to say “no”, but because I was so numb, I took it anyway.  It was from the Canadian Celiac Association, and contained a little card for me to show restaurant people to tell them that I had Celiac Disease.

That was the day that everything changed.






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