My Atypical Experience With Celiac Disease Symptoms and Diagnosis

Updated on December 29, 2018
Jakes51 profile image

I eat gluten free—not because of some health fad, but because I have celiac disease.

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Baker's cyst in the back of my kneeFluid on the front of my kneeRemoving my cyst
Baker's cyst in the back of my knee
Baker's cyst in the back of my knee
Fluid on the front of my knee
Fluid on the front of my knee
Removing my cyst
Removing my cyst

My Experience With the Symptoms of Celiac Disease

When did you first know you had celiac disease? I think that I've told this story a thousand times, and I've yet to tell the same story twice because I'm not sure when I really knew.

What Is Celiac Disease?

Celiac disease is an autoimmune condition (not an allergy!) that causes the body to attack itself when gluten enters it. Foremost, it causes damage to the villi in the small intestines that help promote the absorption of nutrients. According to the Celiac Disease Foundation, nearly 1 in 100 people are affected with the disorder, although many do not know it. Celiac disease, when left undiagnosed and untreated, can lead to long-term health issues.

I am not a trained medical professional, and what I say here is what I've learned through my personal experience. However, I hope that it leads to productive conversations with your loved one or your provider.

My Grandmother Had Celiac Disease

My grandmother was the first one in our family to be diagnosed with celiac disease back in 2006. Shortly after my grandfather died, she started herself on a high-fiber diet. She was getting a lot of her fiber through breads and many other wheat-filled sources.

Her doctor ran all sorts of tests on her and she put in her share of the work by keeping a detailed log of her symptoms. After a while of coming up short, she took matters into her own hands and researched her symptoms on-line. (Hurrah for tech-savvy grandmothers!) She found that her symptoms aligned with those of celiac disease, printed out an article, and marched it into her doctor's office. He wrote the order for the blood test and the rest is history.

I remember my eyes bugged out of my head when I heard that she couldn't have bread or cake anymore. How does one live?!

Never ask that question unless you want to find out.

When I First Noticed Something Was Wrong

Three short years later, I was getting out of the shower. I wrapped myself in a towel, bent to pick up something that had fallen on the floor, and I noticed that my left knee felt just a bit off. It felt like there was extra pressure inside.

Uninsured and generally unfazed, I went a month or two without doing anything.

Then my knee got worse; fluid filled my knee and put so much pressure on the tendons in my knee that it frequently collapsed from under me. It kept getting worse. Eventually, there was so much fluid on my knee that I couldn't stand or put any weight on it.

I had to seek medical help and pay out of pocket.

Diagnosing My Condition Was Not So Easy

The doctor drained 80 mL of fluid from my knee, and I nearly passed out. For seven years, I dealt with multiple misdiagnoses—Lyme's disease, Lupus, and rheumatoid arthritis to name a few—but I never had any confirmed. I dealt with blood tests, MRIs, and hoards of doctors exploring my "interesting case."

I even had them test me for celiac disease, and my test came back negative. After seven years, a ridiculous number of doctors, and three surgeries, I gave up gluten on a whim. After a week, I noticed the swelling going down. After three weeks, I wasn't having flare-ups anymore. My doctors wrote me orders to have a genetic test and an endoscopic exam to explore the diagnosis. The genetic test said it was possible, and the endoscopic test said that my symptoms were consistent with the diagnosis.

My doctors kept me on Humira. I had fought a long battle trying to convince all of my doctors that medications didn't work. After a year and a couple of mistakes by my pharmacy, I finally convinced my doctors to let me live medication free!

Final Thoughts

From what I've concluded: there is not a typical path to a diagnosis of celiac disease. Many of the people I know who have the disease or are gluten intolerant did not have digestive symptoms to start with. Some were just sleepy all of the time. Many of them have become more sensitive to gluten since giving it up. A taste here and there makes them sick for weeks—something that would have happened eventually, but with many more long-term effects.

How were you diagnosed? What symptoms did you experience?

Roll Call!

Why are you gluten free? Or are you?

See results

This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.

Questions & Answers


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      • profile image

        Natalie Frank 

        3 years ago

        Absolutely! Looking forward to your next article!

      • Jakes51 profile imageAUTHOR

        Nicole Jakes 

        3 years ago from Denver, CO

        Thank you Natalie! I get really tempted to splurge every now and again - a sip of beer, a bite of French bread, a taste of a meal with soy sauce. But, I remember all of the pain I was in before I stopped eating gluten and how awful I feel when I accidentally eat gluten and I try to find a substitute. It's not at all easy, especially when you're hanging with people who keep saying "one bite won't hurt." If they only knew...

      • Natalie Frank profile image

        Natalie Frank 

        3 years ago from Chicago, IL

        Great information. I have fibromyalgia and some kind of autoimmune disorder they can't see to diagnose. I was taken of gluten to help with the inflammation and pain but I have to admit I'm not as good as I should be. It's not easy to do but boy do I regret it when I fall off the wagon. And when I fall it's not just a slip it's a fall like the coyote in the roadrunner that goes over the cliff. Thanks for the great info and keep up the good work.


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