My Diagnosis Story

"Is everything normal?" is pretty much the worst medical question to ask a child.  What's "normal" to them -- a belly ache every time they eat, tongue tingling, frequent headaches -- may not be normal at all.  I was a victim of this question.  I also was well aware that I didn't want to be whiny, but I didn't know the difference between whining and stating a complaint about a stomach ache.  That meant that, most of the time and despite their good intentions, my parents were unaware how foods made me physically feel.

I knew very early on that I had an issue with onions and, to a lesser extent, with mushrooms.  When eating at a Japanese steakhouse with my Uncle Steve & Aunt Veda around age 8, they gave me ginger to cleanse my palate.  All I remember is that I had a reaction, and we had to leave before we finished dinner.  I also would avoid eating dairy before school, painfully aware of how loudly my stomach would grumble in class (or worse!) if I didn't.

In 1996, after a lengthy period of tests, absences from school, and even an assumption of mono, a doctor at Nationwide Children's in Columbus diagnosed me with a duodenal ulcer, ovarian cyst, dysmenorrhea.  We hoped that maybe these were the problem.

Ten years later, I was diagnosed with migraines.  "Ok, migraines can cause tummy trouble," we thought...  Other diagnoses popped up: underactive thyroid, asthma, supraventricular tachycardia, vasovagal syncope, an enlarged thymus, and allergies to IVP dye and a cardiac medication.

In May of 2009, my stomach went from being on fire with most meals to doing so at every meal and in between them.  It was constant.   Before this time, I absolutely would not use an unfamiliar restroom unless I HAD to.  After May, I became that person who planned a route around restroom access. I lost 20% of my bodyweight, and it exacerbated my low blood pressure.  My gallbladder was full of sludge, and I had the classic symptom of it failing: dark coffee ground vomit, so it was removed in emergency surgery.

After surgery, I awoke to a fun temporary tattoo

Around that time, a GI doctor diagnosed me with Irritable Bowel Syndrome, which basically meant I should live on Imodium and probiotics.  I wasn't satisfied with this assessment.  It felt like a lazy diagnosis.  Losing 20% of one's bodyweight unintentionally is not normal, even with IBS.  So the tests continued: ultrasound, endoscopy, colonoscopy, allergy testing.  Although the scopes resulted in several biopsies being taken, I was told they were inconclusive for Celiac.

A 6 cm (2 1/2 inch) ovarian cyst was found.  When I went in for removal of it, it had reabsorbed, but endometriosis was confirmed & removed via ablation.  In October, my nurse practitioner suggested trying a gluten free diet, and finally something worked!  A year later, with my boyfriend's suggestion, this website was born in hopes of making others' journey to the Gluten Free World a little easier...and tastier!