My Atypical Experience With Celiac Disease Symptoms and Diagnosis
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!
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?
- Celiac disease - Mayo Clinic
In celiac disease, wheat protein (gluten) in food damages the small intestine, making it hard to absorb nutrients and causing a wide range of symptoms.
- What is Celiac Disease? - Celiac Disease Foundation
Celiac disease is a serious genetic autoimmune disorder where the ingestion of gluten leads to damage in the small intestine. It affects 1 in 100 people.
Why are you gluten free? Or are you?
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.