No Longer the Queen of Denial: Coming to Terms With How Gluten Was Making Me Sick

"An article published in 2001 states that for those with celiac disease or gluten sensitivity eating gluten just once a month increased the relative risk of death by 600%." What? That's ludicrous it can't be right! Or at least that's what I thought when I read that random figure on a website whose credibility was easy to question. What's their source? There's no citation. What article?  I needed more information. I had known for years that celiac is a deadly disease of the immune system causing the body to attack itself in ways that can be fatal over time. However, I had not taken gluten sensitivity very seriously. Gluten elimination in the absence of celiac disease seemed trendy, faddish, a quick way to take off weight. I viewed it as something that could be controlled and maintained if one ate gluten with some selectivity, never life threatening. A quick Google search absolved me of this thinking.

Within minutes I had found startling data from the Journal of the American Medical Association,  as well as the American Journal of Gastroenterology: 

A recent large study in the Journal of the American Medical Association found that people with diagnosed, undiagnosed, and "latent" celiac disease or gluten sensitivity had a higher risk of death, mostly from heart disease and cancer....The findings were dramatic. There was a 39 percent increased risk of death in those with celiac disease, 72 percent increased risk in those with gut inflammation related to gluten, and 35 percent increased risk in those with gluten sensitivity but no celiac disease
 A research review in the American Journal of Gastroenterology recommends that those suffering from irritable bowel syndrome (IBS) be genetically tested for gluten sensitivity intolerance. The Review discusses the role of diet as a contributing cause of IBS symptoms. The authors of the paper further state that the classic signs of celiac disease are often absent for those suffering with IBS even thought gluten sensitivity is the culprit.

The information on IBS was particularly pertinent to me. I was diagnosed with IBS over 20 years ago when part of the treatment was eating high fiber whole grains. I took pride in the ways I began to clean up my diet over the next ten years. It took another 10 years for me to figure out that my body didn't like wheat. Going into my 40's I ate almost no wheat and very little gluten. I dropped a lot of weight and my energy level increased. Although I had flares of the IBS when I was having my period, I assumed there was nothing more that I could do.  After all, I had seen vast improvement.  Expecting 100% relief seemed unreasonable. 

So what happened? Why are we here discussing my surprise at the stats? Dear ones, life got crazy and I became stressed and began eating my feelings again. In that space I did not notice the tiny ways I began to add gluten back into my diet. The addition of a lovely man whose roots are French and Italian meant bread and pasta were back in the house in ways that they had not been before. Add to that one bonus boy who was not raised mostly gluten free and that meant that old trigger foods like crackers and cookies were also in my pervue again. "Those cheddar bunnies are organic, it's okay if I have ten" led to eating half a box. If you're still reading this, chances are you know the drill.  

 A year after we blended our family, I was startled to feel my clothes getting tighter and even more surprised to find I had gained almost 10 pounds. And they wouldn't come off. "Menopause!" I declared, not gluten was causing weight gain, an apple in my midsection (just like the one my mother and my grandmother carried)appeared, I have NEVER been an apple. I upped my activity level, tweaked my food (but not the gluten), researched menopause and found complete confirmation for a variety of my symptoms: fatigue, hormone upheaval, agitation, GI disruption, and even the sudden appearance of midsection weight, known as the apple body type. Only a few sources suggested that menopause correlated with the symptoms but did not cause them. I scoffed at them of course.  

 At that time, a good friend was hosting 30 day gluten-free, dairy-free challenge. Dairy had long been a problem for me and I ate it sparingly but was aware that I had also increased my consumption of cheese (I live with a French/Italian guy...Hello?) along with gluten. I knew it couldn't hurt and I thought it might even help regulate those pesky hormones. I knew I'd drop a few pounds and I was hot to get rid of that pesky apple.  

 Seven days in we had a potluck. I inadvertently ate a chunk of blue cheese in a salad, within minutes I had a headache. Confirmation of what I really already knew. Milk fats make me sick. No surprise. Then came the surprise. A little less than half way in, I made beef stew and thickened it with flour. Again with the denial "it's just a little flour, it will be fine". Dear ones, it was NOT fine. I woke up in a state of lethargy. I could not get going. I could feel the fatigue in my connective tissue, as if hundreds of pounds had been added to every fiber. I cleared my schedule and hit a wall of depression. I still did not make the connection and was certain that menopause, fibromyalgia, and autoimmune disease were all conspiring to take me down. I felt defeated.  Worse, I felt I had no influence on the process. I had to clear my schedule for the entire day.  

 Thankfully, within 24 hours I began to feel better and better. It took me 48 hours to realize it was the gluten and admit that I am gluten sensitive. I have since confirmed, via a nutritionist, my own MD , and several friends with celiac disease that what I experienced is a typical reaction to gluten for folks who cannot consume it. They all understood the reaction I had when I explained it. Other people, without this experience/knowledge look at me like I'm crazy when I tell this story.   So full disclosure, gluten makes me sick. Gluten has been causing an array of things in my body to misfire, breakdown, inflame, and go otherwise haywire. Gluten can decrease my life-span, take away precious time with my family through daily illness and less time on the planet. What I thought was not a serious issue could be the very reason I have struggled for more than twenty years with, IBS, a gastrointestinal illness that is the number one reason people in the United States miss work.  

 This 30 day challenge, that I have not even completed, has changed my life. I think it has probably saved my life. My health was spiraling out of control for no apparent reason. A few weeks ago I confirmed that I have a small fibroid tumor. This is my second time around with a fibroid, the first time so severe it had to be surgically removed. The one constant in my life both times? Gluten. I am of course seeking medical advice, but I am hopeful that I caught it in time to avoid surgery.  Although I have a lot of healing to do. I can see changes in less than 30 days. I have lost 3 pounds and I have not increased my activity level. My energy is better and my thinking less foggy. My last period, I did not have the usual IBS flare that saps my energy. Oh yeah, that pesky apple? It's slowly disappearing. 

A final note. My grandmother and my mother were not heavy women but they both carried excess weight in their midsections during their latter years. They both loved their bread as much as I have loved it. My mother's abdomen was so bloated that when she was hospitalized for a totally different issue her health care providers wanted to know what was wrong with her. Why does her stomach look like that they wondered. Gluten. More will be revealed...