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...

It Takes a Village to Raise a Mother...

Written for the church newsletter in hopes that I will more effectively communicate to those who are important to me the needs of my boy who is one of two that I love the most...

One of the major challenges of parenting an Aspergian child is knowing how much information to share about your child and when is the right time to do so. I feel so blessed to have a church community that is ready and willing to help hold our "special needs" family and yet I always feel conflicted when trying to shed light on behaviors that may seem puzzling. To complicate matters, children with Asperger's are highly sensitive to any comments that could be construed as negative. What would be a reasonable request from an adult to a child in a typical situation can hurt the Aspergian child's feelings or frustrate them. I find myself often running interference and possibly alienating adults who would like to help because I can't find the outlet to share information in a way that doesn't seem defensive.

Or can I? We have a newsletter and God gave me the gift of writing. Let's give it a try.

Owen spends most of his waking hours fielding sensory input that doesn't even register on our radars. "Normal" interaction, noise, and activity for the rest of us are all sensory intrusions on a small and developing system that does not have a filter or the ability to organize the input. Thankfully Owen is very bright and creative and seeks out ways to manage/balance those intrusions. Unfortunately, they are the exact things that are difficult for the rest of us to filter! Ironic isn't it? If you see Owen flipping the lights, pounding on the piano, spinning in circles...it's really his way of saying "I want to be here with you in this place, but I'm having a hard time being in my body".

Like the rest of us, Owen wants to be understood and nurtured. His behavior looks boisterous and maybe even annoying. I struggle at times to avoid addressing the behavior and instead check in with him and ask him quietly how he's doing, or does he need help. By adopting the latter approach, Owen knows that I get it and that I am supporting him. That's how he and I build trust and a different kind of love together. My hope and prayer is that he will build those bonds with the rest of you as well.

Help me to be a better bridge between the two of you. Ask questions. If I can't answer them during fellowship time, maybe we can e-mail. As a homeschooling mom of two young children, my phone time is limited, but I am learning to use the Internet for support and spend a lot of time on the computer. I look forward to growing more in community with my little family and our church family.

More will be revealed...

God knew there would be children with Autism.
So in honor of them, He made the Planets in the Solar System
Spin
Round and round
Round and round
...Round and round
~Author Unknown~

May Mommies

When I was pregnant with Owen, who turns 6 in a little over a week, I scoured the internet for information about being pregnant, newborns, the latest gadgets, breastfeeding and of course, the best foods. In my search for information I was fortunate to find a website community where women gathered and joined in discussion boards that were categorized based on a soon-to-be mama's due date. I happily knew early on that I was having a C-section and anticipated Owen's arrival around the end of April, which made me "qualify" for membership on either the May Mommies board or the April Showers board. I chose the former and never regretted it. For nine months and through-out the first year a fairly large and diverse group of hormonal women were able to gather in cyber-space and share with a great deal of intimacy the joys, pains and frustrations of our changing bodies and lives.

In those early months, the first trimester, we posted pictures of ultra-sounds, celebrated hearing those first heart beats and said painful good-byes to women whose time to carry a baby full-term had been interrupted by miscarriages. At those times we said silent prayers for our sisters and for ourselves that we and our unborn babies did not endure that same pain. In those sweet early days of being parents our anxieties and fears were so intangible, our hopes and expectations so over the moon, it was a safe place to gather and share things with strangers that we could not always voice to those closest to us. No doubt, dear ones, in time, if a group of women whose hormones, bodies, and entire lifestyles are shifting daily, stay in community for enought time they will experience some drama. While the May Mommies groups did a good job staying above the fray it was not possible to completely avoid conflict. We were all so passionate about our parenting standards...slightly amusing and mostly endearing to me now, for my own self anyway...how could I have known how much of that would change once my sweet boy came? Thankfully our little treasuerd did come, one by one....somewhere in those first three hazy weeks I lost contact with our group and when I reemreged a smaller, even more intimate group of women with whom I indentified had split from the larger group and invited like-minded mommies to join with them on a "private" board where we could safely post pictures of our babies and families and share more deeply.

It was a sweet place to be for the time that we needed it to be. We all were very close for a while and I was fortunate to meet one of my fellow mamas one afternoon as were other members on the board. We celebrated those times with one another, eased each other fears over rashes, sleepless nights, stinky poos, and confused husbands. We celebrated successful latches, crawling, fitting into our old jeans, sleeping for 5 consecutive hours, and getting to the grocery store and back without projectile vomiting or pooping. It was the cyber version of tribe for me, without my group of "girlies" I would have been very isolated and alone that first year.

Six years later much has changed. Our little group was not able to avoid the perils of cyberspace drama and eventually disbanded in sadly, some very painful ways. Many of us grew our families by two or more, while some stopped with one, and others stopped with their last. As parenting became more complex for me, I wondered what my sisters were up to and how they were faring, but even sending an e-mail became a little overwhelming in the early stages of parenting two small children. I eventually lost contact with even the women I had been closest to.

Happily, last year I arrived on Facebook and found, one by one, the women I held dearest to my to during those early parenting years. It has been bittersweet in many ways. We are all very busy and much time has passed. Although the affection is still there, the connection is not as strong as it was when we were able to "talk" to each other daily and share the intimate details of our lives.

Parenting has been challenging to us all in ways that we did not foresee. My Owen was diagnosed with Asperger's when he was four. Although I knew it almost from the beginning, it was a secret I kept even from my online mommies until the diagnosis was professionally confirmed. In keeping that secret, I became more isolated from my sisters.

Today one of our first babies, Avery, celebrates his birthday. Avery is a beautiful and intelligent little boy whose spirit shines through in his dazzling smile and has since he was an infant. I found out recently that Avery was diagnosed with Duchenne muscular dystrophy (DMD) a particulary severe form of muscular dystropy which, without a miracle, will take Avery from his family and this world much too early. Much like I did when she was pregnant, I still pray for Avery's mother Lee Ann that she be able to stand up to the joys and rigors of this challenge. I know that she prays for me as well.

I am so thankful for my May Mommies, all of them. They each have a special place in my heart and they always will. Happy Birthdays Mamas, I love you!