When I first read your e-mail, I didn’t really think I’d respond to it. Then I realized that you’re right, maybe reading about my experience with Celiac will help someone else and perhaps save them all the years of suffering that I had to go through. So here you go…
My life as a Celiac started on Sunday, August 15, 2004. After three days of diarrhea, bloating and nausea, I finally asked my husband to please go to the store and buy some gluten free bread and stuff.
The previous several months, our youngest daughter was being tested by doctors for her anemia. She was on a soccer scholarship at a university in another city and her coach, knowing how hard she trained, couldn’t understand her lack of energy and stamina. So she referred our daughter to the team physician, who initially identified anemia and prescribed iron supplements, which didn’t seem to help much. She was then sent to a series of specialists who administered numerous tests, including a colonoscopy, and eventually diagnosed her as celiac.
Knowing my history of lifelong continual digestive problems, she kept saying to me, “Mom, I had to get it from someone, it’s hereditary. You’re probably celiac, too”. But I had been tested for celiac, more than once, and it was never confirmed, so I didn’t really agree. Until I got sick and tired of being sick and tired – all the time.
I guess my story really starts shortly after my birth in 1947. My Mom often commented about ‘her colicky baby’ and how I never stopped crying most of the first year. Every time I cried, she stuck another bottle in my mouth or fed me more Pablum, which seemed to help for a while. At night, when I wouldn’t or couldn’t sleep, she and my Dad would drive around until the motion of the car eventually put me to sleep.
My youth, growing up on a farm, was always busy, and illnesses were ignored or dealt with as necessary – I just got on with life. Then came marriage, three kids, and again, illnesses were just something I had to deal with. But as I got older, the illnesses seemed to get worse, digestive problems mostly, sometimes severe complications from constipation (resulting in emergency surgery) to severe nausea, bloating and diarrhea. Over the next few years I went through several series of testing, both upper and lower gastro-intestinal, and was eventually diagnosed with irritable bowel syndrome (IBS).
However, nothing really changed, except my energy level continued to drop, and I grew continually more and more achy and sore. In 1998 I was diagnosed with osteo-arthritis and started taking prescribed anti-inflammatory medication. Then almost a year later, growing more and more sore and crippled, I was diagnosed with fibromyalgia and prescribed more drugs, a combination of anti-depressants that had proven to be somewhat effective with this ailment.
However, over the next six years, the quality of my life continued to deteriorate. I had less and less energy and less interest in anything around me (including friends and family) but I had to force myself to go to work every day, we needed the income. But I would almost crawl home from work, fall into bed, and sleep until it was time to go to work again, even on the weekends. Basically, I had no life. Until 2004, and my daughter’s famous words, “I had to get it from someone”.
Once I started on a gluten free diet, my energy level started to rise and I actually started to live again. Which was a Godsend, because at that same time my mother was diagnosed with terminal lung cancer. I actually had enough energy to work all week, drive three hours every Friday to spend the weekend with her and relieve my sister (who was full-time caregiver) and do the three hour drive to return home Sunday evening. I continued to stay on a gluten-free diet and experienced very few problems – only on those few occasions (I can count on one hand) when I ate something that must have had gluten as part of the ingredients.
When she passed away in January 2005, my husband had started his own cancer treatments, so the next year sort of went by in a blur. I just did what had to be done and, thank God, he survived.
With the beginning of 2006, I finally decided to start taking some care of myself, something I’ve never really ever done. I had also noticed that even though I was on a totally gluten-free food regimen, I still wasn’t feeling great and my energy level was almost non-existent. I started researching Celiac disease and in several cases, was interested to note that Celiac is often misdiagnosed as IBS, fibromyalgia, etc. etc.
Then I asked myself, “What if I’ve never had IBS or fibro?” What if all I’ve ever had is a food allergy – to gluten? What if I was never ‘colicky’ but allergic to what my mom was feeding me? In that case, what are all these prescription drugs doing to me, and my system? So I did some more investigating and grew continually more and more concerned. I decided then and there (February 3rd, 2006) to stop taking all these drugs.
As I sit and write this, April 23rd, my energy level has continued to increase and my husband and I actually took a week vacation in Maui, where I was able to do more walking than I’ve done altogether the past nine years. And I hardly ache at all. I still have arthritis, and a certain amount of discomfort from that, but being active really helps control that pain. I’m actually enjoying life again and now I’m thinking of actually trying out some of the recipes from your website, hoping to provide a bit more variety to the foods I eat. I haven’t had pizza or a hot dog on a bun for almost two years. I also used to really enjoy wraps, so I’ll also be looking for a recipe for tasty, gluten-free tortillas. So, thank you, for asking for this story, and for initiating the great web site.