Describe your life prior to diagnosis.
The only obvious issue I had was horrific, noxious, uncontrollable gas. It was so bad that I hated to go out.
I would race down the grocery store aisles hoping no one would realize where it came from. Since I was [in my] late 40’s, I blamed it on aging and eliminated foods that might cause gas: broccoli, dried beans, lettuce . . .
So instead I was eating more pasta and bread.
How long did it take for you to get diagnosed since your first symptoms?
I found out quite by accident, actually. I had been a regular Red Cross blood donor, but frequently, my iron levels were a bit too low to donate. So I started taking iron, waited about 2 months, and then went to try again.
This time the iron levels were lower and they told me, very forcefully, to make an appointment with my doctor.
A few years prior I had severe anemia, but that was prior to my hysterectomy and the problem seemed to be resolved with large doses of iron and the hysterectomy.
My doctor sent me to a gastroenterologist, who said it was probably a bleeding polyp, but if not, he would then do an endoscopy, because it might be a bleeding ulcer. What a surprise to wake up and learn I had celiac disease!
He gave me a very brief explanation and referred me to the medical library in the hospital. This was in 1997; it was still practically unknown and I didn’t exhibit any of the classic symptoms.
In the period before I first began having problems and was then diagnosed, I had been through a divorce, had to move, and had two major surgeries, all of which support the notion that the genetic predisposition is triggered by stress. I also had an uncle who died in childhood, and despite the family’s insistence that he died of flu, I’m sure he had celiac disease.
Describe your experience living with celiac disease.
Again, this was 1997. There was nothing available. I live in a medium-sized city, but there was only one health food store that carried rice flour, perhaps one other gf flour, and some inedible bread.
I learned about Bob’s Red Mill in Portland when my son began attending college there. Whenever I had occasion to visit him I would go to their factory store and fill my trunk with cases of the various flours they milled.
Fortunately I had been a baker since I was a child and had mostly baked and cooked “from scratch” mainly because, as a single mom, I needed to save money. I mostly created my own recipes and my own flour blend.
When a couple of cookbooks came on the market I purchased them and used them as a basis for more experimentation. Likewise, when there began to be a few things on the Internet, I used them as a tool to understand how the different flours interacted.
There was also a small, closed online group and we shared stories. That’s when we, and medical professionals, primarily from Johns Hopkins Medical Center, realized that there is not one set of symptoms—they are as varied as the people who have it.
What would a cure mean for you?
It would be convenient, making it easier to eat out, attend potlucks, travel, especially out of the country, and the like. But after nearly 30 years, and with the wealth of products available and my own baking and cooking skills, it’s not really a big deal.
My daughter also has [celiac disease], though she was not biopsy diagnosed. And we both have Graves’ disease as well.