"I'm never going to eat again," I said as I sat in tears at the table with my sister and mother-in-law.
Rewind to one day earlier - waking up from an intestinal endoscopy, as my doctor showed me photos of my intestine while I was still in the middle of an anesthesia high. He told me it was confirmed; I have Celiac disease. OK, great. Now what?
Fast forward to the next day, sitting at the kitchen table of a friend whose daughter had been diagnosed with CD. She was so darn sweet and assured me I would be fine. Well, this sweet lady whips out a pack of papers listing foods that were now "taboo" for me and foods that were "safe." Staring at those lists sent me into a world of self-pity. I was starting to realize that the enemy was everywhere; in everything I ate ... literally everything. I quickly came to the conclusion that I would suffer a slow, miserable death via starvation. Ironically, that is precisely what was happening to me already.
Let's rewind again to 35 years ago, when I was a pre-teen. Along with a knife-in-the-gut feeling every time I ate, I also was plagued with excessive acne, chronic diarrhea, bronchitis and cold symptoms, unexplained weight loss, fatigue, anemia, dermatitis and irritability. This was the norm to me. I truly, 100 percent of the time, assumed that everyone else went through the same things on a daily basis and that everyone just accepted it. It seemed like any type of prescribed medication never touched any of my symptoms.
Then came all the girly body changes on top of all the painful symptoms already going on. Welcome to the next chapter - menstruation. Monthly visits were debilitating, to put it mildly. I remember laying out like lettuce over my school desk, drenched in sweat and just hoping someone would hospitalize me. How did all the other girls hide their pain? I felt so weak, mentally and physically. Then, as the years went by, there were no changes for the better, my body just kept stirring the pot and adding more poison day after day after day.
The next thing to plague my slowly dying body was infertility, which had settled in for no apparent reason. Miscarrying six babies should have been enough to send me over the edge. But no, that's not enough yet. Next up was the hair loss. I was a 30-something year old walking, talking, malnutritioned victim. Victim of what? Nobody knew. I suffered for years, being accused of binging and purging because of my weight. Little did anyone know, except those closest to me, that I could eat anyone out of house and home because I was always hungry. It's just that nothing stuck with me because CD was not allowing me to maintain vitamins and nutrients my body needed to survive.
The day my life changed forever, my new doctor at Geisinger, in Lewistown, took a good hard look at all my bloodwork results. She looked at the big picture along with all of my, what seemed to be, hypochondriac issues. She wanted to send me for CD testing, explaining that I may be having issues with gluten. Having absolutely no clue what this CD stuff was or even what gluten was, I was ready. Besides, if it meant I would get some sort of prescription to take care of all my "stuff," then I was in. She explained that treating the disease would be to "simply" eliminate gluten from my diet. Easy, I thought. Whatever gluten is, I'll just remove it.
Remember me sitting at the table crying? That was when I got schooled on what gluten was and what food contained it ... thus the mental breakdown. I was going to have to make all my own food from scratch. Though I hadn't died from gluten yet, I was sure that I would now die from lack of it.
Fast forward to present day. I've gotten most of my hair back, I don't have to hide after I eat, my monthly visitor is welcome anytime, my acne is no longer the plague, dermatitis has left the building, anemia has kicked the curb, fatigue and irritability is a direct result of working and raising a family, and the constant cold and chronic bronchitis are controlled.
I will never recover from the miscarriages, but two adopted little girls and a step-son have taken the worst of that pain away. So what is this crazy disease called Celiac Disease? By definition, the Mayo clinic describes CD as an immune reaction to eating gluten, a protein found in wheat, barley and rye. If you have celiac disease, eating gluten triggers an immune response in your small intestine. Over time, this reaction produces inflammation that damages the small intestine's lining and prevents absorption of some nutrients. There's no cure for celiac disease, but following a strict gluten-free diet can help manage symptoms and promote intestinal healing.
My definition: Consuming gluten makes me sick in ways that most people don't understand. There are even some symptoms I don't have that others with CD experience. Though symptoms can go unnoticed on the outside, victims are still dying a slow death on the inside. After years of research, I have learned to read labels and live by this rule: When in doubt, do without. Although there are many healthy and life-saving benefits to removing gluten from one's diet, all gluten free products are not healthy in the diet sense. For instance, you can walk to the gluten free section of any supermarket and find that most of the products on the shelf are still processed and loaded with sugar and other unhealthy ingredients.
Eating out also has become a challenge. Many restaurants claim to have gluten-free meals, however, they've failed to ensure that contamination has not taken place. What is contamination? When you cook or prepare a gluten-free product on a surface that previously had a glutenous item on it, even if it was cleaned. Believe me, preparing a gluten-free menu is not an easy or inexpensive task.
I've also found that non-food/beverage products contain gluten, like makeup, lotions, envelope and stamp glue and hair products. These items have the same negative affect on individuals with CD as food with gluten. I know this from experience. Unfortunately, you only find out things like this after the fact.
I could write 1,000 more words on this subject, but the big take-away I hope all the readers get from this is that whatever your symptoms, it's completely worth getting tested via a capsule endoscopy. In my personal opinion, this is the only test that will give you 100 percent accuracy. Blood tests focus on the symptoms, not the underlying reason.
For more information regarding Celiac Disease, I recommend www.celiac.org.