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The story of my celiac disease diagnosis

My journey with celiac disease began with headaches. I got my first migraine when I was 7 and I had a headache every day after. Taking an aspirin would make me vomit within minutes and then I would feel fine. Puzzling symptoms that would come and go, like muscle pain, bouts of depression, hot flashes, stomach aches and abdominal pain, nausea, pins and needles in my hands and feet, and frequent trips to the bathroom plagued me for years to come.

It wasn’t until I moved cross country to Georgia in 1993 that my symptoms came on like gangbusters and I struggled to live a normal life. I got used to the stomach pain, headaches, hot flashes and a bloated abdomen that occurred after eating anything. I was beyond fatigued and slept more than 12 hours a day on the weekends. My skin was pale, my hair was falling out, and everything hurt. Not knowing how my body would react, I became afraid of food and existed on a jello, chicken broth, crackers, and ginger ale because they didn’t make me sick, or so I thought.

Stomach problems ran in my family, but no one felt as miserable as I did on a daily basis. My father and sister were both diagnosed with Gastroesophageal Reflux Disease, so maybe this was the culprit. I avoided a list of ‘trigger’ foods, but didn’t notice any improvement. Thinking things couldn’t get any worse, a new symptom appeared – mental fogginess.

Medically speaking, mental fogginess is a form of impairment that can encompass disorientation, problems with staying focused and paying attention, and lapses in short-term memory. I feared I was seriously ill and possibly dying. It isn’t normal to all of a sudden be incapable of forming a sentence, answering a phone, or functioning as a human being. I felt helpless until the fog miraculously lifted and everything went back to normal. How is any of this normal?

I charged into my doctor’s office with food journal in hand and sobbed for about an hour. The journal showed that my changing reactions to the same foods had no rhyme or reason. The journal, combined with my deteriorating physical state, and a truck load of symptoms led to my celiac disease diagnosis in 1997 at the age of 27. I suffered for 20 years undiagnosed with a daily pain level most people don’t experience in their lifetimes – worse than child birth.

When I was finally diagnosed with celiac disease on 4/4/97, I had barely enough energy to get off the couch to feed and bathe myself. I had to wear clothing that was many sizes too big because zipping up my pants caused shooting pain from my giant abdomen. And I was afraid I would be fired from my job because of frequently going home sick after lunch.

Being diagnosed with this disease left me feeling lost, depressed, isolated and very deprived. No one had heard of celiac disease, or gluten, so I was on my own with no one to turn to for support. I couldn’t find a local support group and even dietitians were of no help.

After the initial shock of having an autoimmune disease subsided, I had to learn how to safely feed myself through extensive label reading and endless trips to the grocery store. There were no food labeling safe guards and no one seemed concerned, or even knew that cross contact was an issue. Many phone calls to manufacturers had to be made to ensure a product was free of gluten before consuming.

Conducting research, plus lots of trial and error helped me find my confidence and many products that are still my favorites. Although a lot of these products had to be ordered direct from the manufacturers (outside of the United States) because there were no online ordering sites at that time.

It has been 20 years since a diagnosis of celiac disease saved my life in more ways than one. Now I am thriving, living a gluten-free lifestyle, and I have taken back my life from this underdiagnosed genetic autoimmune disease.

How long did it take you to get diagnosed? How many doctors did you see? What has the journey taught you? Please share your experiences in the comments.


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