I have battled digestive issues my entire life. I remember the panic inducing, cold sweats which would suddenly appear while browsing the mall with my grandmother when I was 9. As cold sweat would bead down my back, I remember looking desperately for a bathroom, while my grandmother ordered me to hold it. I still find myself avoiding anything spicy, exotic, greasy, or delicious when getting ready for a road trip or a date. There is nothing more embarrassing then having an attack happen while out with friends or in places where there is an audience in the bathroom when your bowels become explosive.
The unexpected flare ups are the worst. Having a seemly harmless meal to find yourself running to the bathroom every hour the next day. You are experiencing so much abdominal pain, bloating, and cramping that you feel like you will be ripped in two. You are so sick, that you avoid food altogether. Toliet paper begins to feel like it is embedded with glass.
The digestive issues run in my family. And after dealing with severe digestive issues in Korea, I received an endoscopy of the stomach that indicated inflammation due to heart burn. The doctor attributed it to
Irritable Bowel Syndrome, and told me to avoid stress and food triggers.
However, my life is unpredictable with IBS. I am never quite sure what will trigger my attacks, and even avoiding greasy foods, chocolate, cheese, and other known IBS triggers still does not diminish my attacks. I can go weeks feeling great, and then be leveled by an attack. My kidneys hurt, my intestines growl and twist, and I find that terrifying panic setting in.
As most people, with easy access to the internet, I have been doing research. Of course after reading symptoms on WebMD and being convinced I had everything from depression to colon cancer, I am beginning to rethink the IBS label.
According to
WebMD and the
Celiac Disease Center in California, approximately 6% of patients diagnosed with IBS may in fact have another relatively unknown and little understood condition called Non-Celiac Gluten Senstitivity (NCGS or gluten intolerance). What separates NCGS from celiac disease (which is a severe and life-threatening auto immune disease to gluten) is that individuals do have not damage to their intestines (diagnosed through colonoscopy) or the presence of antibodies in blood tests. There is presently no diagnostic test avaiable for NCGS. Even more frustrating is that the symptoms for IBS and NCGS are relatively the same, which makes it difficult for doctors to accurately and effectively diagnosis patients.
So, what the fuck is gluten?
Trust me, ask the average
American, they can expound upon the virtues of a gluten-free diet or discuss this friend or that celebrity who has lost weight going gluten free. However, most people could not actually tell you what gluten is.
Luckily for me, as a biologist and science teacher, I just needed to look at one of my textbooks.
Gluten is a protein, and actually it's a combination of two proteins: gliadin and glutenin. Gluten is present in the endosperm of grains such as wheat, barley, and rye. The endosperm is the part of the plant's seed (we refer to those seeds as grains) which provides nutrition to the developing embryo during germination. For us, gluten is what gives baked bread that elasticity and delicious chewiness that we love.
So why is gluten a problem now? Well some scientists have an
answer for that: We don't prepare our grains the same way. Our ancestors hand ground the grains into a flour and then used a slow-leavening process to help bread to rise. That slow leavening process may have helped break up some of the gluten present in grains. Today processing techniques have rapidly shortened the leavening process and cross-breeds (think genetic modifying) of our grains have seen gluten in other varieties beyond just simple wheat, barley, and rye.
Okay.....so I am just going to make all my bread by hand. Problem solved!....
Actually, a new study by Drs. Biesiekierski, Peters, Newnhawm, Rosella, Muir, and Gibson just published in
April indicate that it actually may not be gluten that people have a senstivity towards, as previously thought.
Bull shit!
Ok.....let me mention that Dr Biesikierski and his colleagues were the same people who published a large
study in 2011 which indicated that people with no celiac disease may have reactions to gluten (aka NCGS). In fact, his study was the one that essentially spurred the neotrend of gluten free lifestyles and the gluten-free food industry (which makes approximately $6.2 billion/year). As most scientists, he wasn't satisfied with his results, so he refined his methodology and removed any additional confounding variables which may have influenced his results.
So what did he find?
Well, the culprit may not be gluten after all....rather FODMAPs.
What the fuck are FODMAPs?...
Well FODMAPs are fermentable, poorly-absorbed short chain carbohydrates, nitrites, sulfites, benzoates, etc. In other words artificial perservatives which are frequently found in processed foods that also happen to contain gluten. His study showed that patients who ingested low-FODMAPs diets had a reduction in digestive flare ups and symptoms in comparison to patients ingesting a high-FODMAP diet. Interestingly, patients reported having gluten flare ups in his study regardless of whether or not gluten was present indicating a nocebo effect (patients had no idea when they were receiving gluten in their diet). For those of you, who are not scientists, a nocebo effect is where patients report harmful symptoms even when harmless substances are present.
So what does this all mean? Gluten free or FODMAP free?
Well the answer, like most things in science, is that it needs additional studies and a lot more research into both NCGS and FODMAPs. The commonality is that both gluten and FODMAPs are frequently found in processed and refined foods. Which is also why people have also jumped on the
Paleo Diet bandwagon (gluten-free and processed food free diet) in the past few years.
So what are patients like me, with a history of IBS symptoms who may suspect another culprit (gluten, FODMAPs, etc.), to do?
Doctors suggest patients who suspect NCGS should be tested
first to rule out celiac disease, before going gluten free (or more importantly avoiding processed foods containing grains) to ensure an accurate diagnosis and assessment by your primary physician or a gastroenterologist.
As for me, as my intestines continue to rumble as I post this, and I am within jogging distance of the bathroom. After discussion with my primary physician, she has suggested going gluten free using a Paleo Diet for several weeks (the reduction in sodium from processed-free foods may also help my issues with blood pressure). I am supposed to write down everything that I eat each day, and to document any flare ups, symptoms, etc. which arise and how long after eating.
Going gluten free or adhering to a Paleo Diet is not easy. In other words, cutting out refined foods, grains, and processed foods requires time, effort, and more importantly money.
A bag of all-purpose flour costs $3 compared to a comparable sized bag of almond flour at $10. And sadly, the
FDA has just begun to set stricter restrictions on companies regarding gluten-free. In other words, food labels may say gluten-free but actually the food may be processed in the same plant that makes gluten products or it may contain derivatives of grain which contain trace amounts of gluten.
The other
problem is that fresh fruits and vegetables are harder to obtain and are more costly than the Ramen noodles, potato chips, canned soups, etc. that line the convenience store and grocery shelves located in most urban and economically depressed neighborhoods (also called "food deserts"). Avoidance of gluten and processed foods is not necessarily easy (look at what is vending machines and work place break rooms), and people who deal with serious allergies will describe the frustration of planning their social lives around places offering gluten free options.
In the meantime, while I wait for the research to continue concerning NCGS, FODMAPs, and digestive conditions, I am going to attempt to evaluate the effect of going gluten-free and processed food free for a few weeks. (I will have to wait till my workshop is done since everything from breakfast to lunch contains gluten and/or processed foods). When I went Paleo last year, I did feel better (less flare ups) but I did not truly eliminate all gluten, which is the only way to deal with NCGS (say goodbye to beer!). Not to mention, it was expensive to maintain and shop for (grass fed meat is twice the cost of grain fed meat).
However, the list of symptoms of NCGS is enough for me to warrant the experiment of trying out gluten-free and processed free food on a more permanent basis:
- cramping
- bloating
- gas
- abdominal pain
- irritability
- chronic fatigue
- rash
- depression
- joint pain
- migraine headaches
- diarrhea
- constipation
- heart burn
I heard about the Believe in CLE events through my friend Carolyn who invited me to tag along this summer as 2100 yogis practiced yoga in front of the Rock and Roll Hall of Fame. It was blissful, it was challenging, and more importantly I felt connected to my city. It made me realize how far I had come from Charlotte, and how much I was finding the person I lost after being stuck in an abusive relationship for three years. 
This time, I attended the Believe in CLE event by myself. However even without the support of close friends, the feeling of connection and energy was the same as I took the court of the Q Arena with Moondog and 600 other Cleveland yogis practicing their Downward Dog. While I would label myself as a recreational yogi given my inability to afford regular yoga sessions, I still felt like I belonged. 
