How I Had to Advocate for My Own Celiac Disease Diagnosis

I looked down at my phone and saw a text message I definitely wasn’t expecting.

“You have a new message in MyChart. Click here to view.”

Okay… I’ll bite.

What could my doctor possibly be sending me?

The screen loaded, and I started reading.

“Please notify the patient that EGD pathology is positive for gastritis. Duodenal biopsies confirm celiac disease. Patient should be on a gluten-free diet per our previous discussion.”

Now, you would think this would be life-altering, devastating news.

And in some ways, it is.

The thing is… my endoscopy was two months ago.

I had already bugged my doctor until he finally gave me this answer weeks earlier. I’d already cleaned out my kitchen and replaced everything that needed replacing. I’d already had my first accidental gluten exposure and spent damn near a month battling panic attacks, debilitating anxiety, and eventually GI symptoms.

I am finally feeling okay.

And NOW I get this message?

Two months later.

After I’d already figured it out myself.

Please help me understand.

Is navigating the medical system really this frustrating?

Y’all… if there is one thing this entire process has taught me, it’s that, for me, the medical system absolutely was this frustrating.

I genuinely hope that isn’t everyone’s experience. I hope you have a gastroenterologist who specializes in celiac disease. I hope your questions get answered quickly. I hope you feel heard. I hope you feel cared for.

Let me rewind…

If I really think back, the random bloating started after my second kiddo was born 7 years ago. 

Then, I was dealing with intense stomach pain in the mornings for a couple of years. I started drinking apple cider vinegar in my water every morning, and for some reason, it seemed to help.

Maybe that was a coincidence.

Who knows?

Then came the chronic constipation.

Fun, fun.

The tipping point was when I started having excessive burping. Not all the time, but usually after dinner. And I don’t mean a little burp here and there.

I mean…

Belch after belch after belch.

To the point where I looked at my husband and asked,

“This isn’t normal… right?”

To which he enthusiastically confirmed that, no, it was definitely not.

So, in a moment of weird medical anxiety, and knowing my family history, I ordered an at-home H. pylori test along with a celiac screening blood test.

I did not expect the celiac screening to come back…

“Highly Likely.”

That’s what started me on my journey of steamrolling the system.

I made an appointment with my primary care doctor, who referred me to a gastroenterologist.

My first appointment with the GI was laughable at best.

He told me I didn’t really present as someone with celiac disease because they typically saw women who were, in his words, “wasting away.”

He confidently diagnosed me with IBS but decided to repeat the celiac bloodwork “just to be sure.”

Four days later…

Baby.

That Tissue Transglutaminase Ab, IgA came back greater than 250.0.

Off.

The.

Charts.

So I called to schedule my endoscopy.

The sweet scheduler answered the phone.

“Oh, honey… we’re booking about three to four months out.”

Me: “Even though my bloodwork is that high? And I’m supposed to keep eating gluten until then?”

Her: “I mean… we have people with cancer waiting.”

Cue me immediately feeling like the biggest jerk on the planet.

I said something understanding… with just a tiny hint of disappointment.

A few minutes later, she called me back.

“Do you want me to put you on the cancellation list?”

Absolutely.

Fifteen minutes later…

She called again.

“Someone just canceled for Monday at 2:00.”

“I’ll take it!”

Apparently, polite persistence pays off.

I ended up having my endoscopy exactly two weeks after my first appointment with the GI.

The poor doctor hadn’t even had time to review my bloodwork before he was scrubbing in for my procedure.

And now…

Two months later…

I finally receive the official MyChart message.

Thanks, Doc.

I’d be lying if I said there wasn’t a small part of me that hoped everyone had been wrong.

That maybe the bloodwork was a mistake.

Maybe the biopsy would come back negative.

Maybe I’d wake up one morning and discover this was all some bizarre misunderstanding.

Because once you receive that diagnosis, there’s no going back.

There isn’t a pill.

There isn’t a surgery.

There isn’t a cure.

There’s just a lifelong commitment to eating gluten-free.

That’s a hard reality to accept.

But…

I’m learning that I’m going to be okay.

There are far more gluten-free options than I ever realized.

My friends and family have shown up for me in ways I never expected.

Little by little, I’m learning how to navigate this new life.

And while this isn’t exactly what I had planned for myself, and I’m guessing it probably isn’t what you planned for yourself either, if there is one thing this experience has taught me, it’s this:

Advocate for yourself.

Ask questions.

Seek second opinions if something doesn’t feel right.

If you feel like your concerns aren’t being heard, keep pushing until they are.

No one knows your body better than you do.

This is your life.

This is your health.

And while we can’t start healing until we have answers, we also can’t be afraid to ask for them.