How I Narrowed it Down to Gluten
I want to share my story and all the gory details of my food intolerance. Why? Well I guess I just stopped being embarrassed by it and I want people, especially the newly diagnosed, to know they’re not alone.
The start of my gluten intolerance went back to childhood. I was always really underweight as a kid, had difficulties concentrating in school, and suffered through a variety of gastrointestinal issues after eating certain things. As a kid I wondered if all these symptoms were normal. Doctors didn’t take me seriously and just told my family it was growing pains. As I reached adulthood, I really didn’t understand why I felt so fatigued and ill on and off and neither did my skeptical doctors, who I’m sure wondered if I was a hypochondriac. Little did the doctors know that my symptoms were part of a much bigger picture.
It wasn’t until college and the consistent exposure to horrible college dorm food, late night pizza indulgences during weekends of irrational beer consumption, lack of sleep by choice, and a 30 dollar a week food budget which created a perpetual spaghetti or mac n cheese diet, for me to really see more symptoms arising. I know what you’re thinking, most college kids party, eat like crap and pull all nighters, therefore most students probably feel like crap most of the time. It’s just that when I compared myself to how the others I was hanging out with were feeling after eating pizza and beer all night, I noticed that my severity of symptoms and my ability to bounce back was abnormal.
During college I visited many doctors complaining of horrible acne breakouts, headaches, upset stomach, gas, IBS, difficulty concentrating, hypoglycemia, dizziness, nausea and widespread muscle pain. After they looked at the results of standard blood panels (checking for thyroid, cholesterol, or blood sugar levels), which always came back normal, they would just stand there scratching their heads. Most of my doctors genuinely cared, but they can only fix what they understand. So they prescribed me headache meds one month, muscle relaxants another month, IBS pills the next, and hey why not throw in some anti-depressants while we’re at it. Doctor knows best, because for all I know this craziness is all in my head. Wrong! It was so easy to jump on the prescription drug train, but all these pills just didn’t feel right.
With my growing interest in holistic medicine and nutrition I began to question the doctor’s approach to my health conditions. Something inside of me wondered if my symptoms were food related. You are what you eat, right? I’ve always believed our well-being is mostly dictated by how many unhealthy choices we make and the illnesses we experience are mostly preventable if we choose to eat right and exercise. Even though I understood the concept of this, even when I was on several different prescriptions, I just kind of put faith in the doctors word. Why? Well first off, certain prescription drugs can be effective for short term or long term relief and do have their place and secondly, I’m not a doctor.
A few years after college I had the worst flu or food poisoning I’ve ever had in my life, not sure which. It was probably a 12 hr period of vomiting and such that landed me in the ER because it left me severely dehydrated. Shortly after, I noticed a dramatic shift in the way my body was responding to food. The symptoms I had experienced before had worsened to a point where it became totally unbearable to consume gluten. My gas, my IBS, my fatigue, muscles aches, stomach pain, nausea, headaches, and even my ability to dictate my words and write worsened. It’s like the stomach illness just totally annihilated my digestive system. I have read that there’s a strong possibility that gastroenteritis (flu, food poisoning) can trigger the onset of full blown Celiac Disease. So one can go years with what doctors call “silent celiac disease” and then a shift in your body occurs that progresses the disease making symptoms unbearable. It’s a theory that is worth investigating because maybe we can learn more clues on how to catch it earlier.
Normally, it’s probably recommended that you go to a Gastroenterologist, but I found myself walking into the office of a Chiropractor and Board certified Nutritionist. She listened to every complaint I had, pieced the puzzle together and immediately ordered an ALCAT Test (Antigen Leukocyte Cellular Antibody Test) a very comprehensive blood panel which identifies cellular reactions, an initiation of an immune response or intolerance to 150 different foods, an array of chemicals and molds. Keep in mind the test only works if you’re still consuming gluten because it looks for an elevation of antibodies that react to gluten. It is not meant to be used for an official celiac disease diagnosis, which is usually found with an endoscopy that will confirm the presence of intestinal damage.
I was totally clueless as to what gluten actually was at the time and I thought I had a beef allergy. I was so wrong. I had been indulging in a lot of Italian beef sandwiches that summer….taking a moment, shedding a tear over the loss of hoagies with au jus, ok better now. So my ALCAT test results came back and NOOOOOOOOOOOO! I can’t eat gluten, but Yay! I finally know what the hell is wrong with me. As a warning though, this test is very thorough and they break your intolerances down into 3 categories: severe, moderate, or mild. There might be more foods than you want to see on these lists. My nutritionist told me to just focus on the severe intolerance column because those were the foods that were causing the most inflammation. The next step was to begin an elimination diet based on the test results. Any foods in the severe column needed to be avoided for 6 months or more. Bye bye gluten, hello feeling better. If only it was that easy. It definitely took some time and several more punishing bouts of symptoms before I kicked gluten to the curb.
However, to be completely honest, every now and then I find that a very small piece of my toddlers crispy, beer battered fried fish ends up in my mouth, on rare occasions, when we eat out. Yes I feel it, but sometimes during certain times, under certain circumstances, my will power alone is not enough to keep me from taking a nibble of the forbidden gluten. We’re only human, not mechanical. There is no switch in our brains we can flip to make us perfect or infallible. Letting go of certain foods you love to eat is not an easy task. It will take time and that’s okay. You might have to endure a few more food hangovers before you can kick the habit.
I think the struggle with gluten intolerance and Celiac Disease is that it has so many symptoms that can come and go depending on the person, what is being eaten, and the frequency in which it’s being eaten. That makes it hard to see the cumulative affects of ignoring gluten intolerance. I posted a symptoms chart below created from my own experience and information found on celiac.org. It’s important to remember to never self-diagnose yourself. I learned this the hard way, after years of irrational mood swings and explosive, room clearing fart bombs….my poor husband, might need to scan him for brain damage. So the ones from the chart that stuck out the most, in my experience, are brain fog, irritability, acne, brittle nails, gas, loss of appetite, leg cramps, fatigue, nausea, dizziness, stomach pain, diarrhea cha cha cha, constipation, sleeping issues, neurological issues and low blood sugar. Yay! Let’s all take turns punching a bag of white flour. Wait…hold on celiacs, you better wear a hazmat suit before you go anywhere near that flour!
Many people have asked me if I have celiac disease. To be honest I don’t know. I just know that gluten kicks my butt. My health improved after eliminating gluten. I have a blood test to remind me that even though those crispy cremes smell amazing they are now my sworn enemy. An endoscopy, a tissue biopsy, would confirm intestinal damage and Celiac Disease, but in my mind there’s no point in getting that done just to confirm what I already know. Gluten is the devil and by removing it from my life I have effectively exorcised the demon. Many wonder how I went so long enduring symptoms. Truth is, without a proper test or the right doctor, it’s easy to believe you have several unrelated illnesses. There is power in official diagnosis. An elimination diet can be just as good though. Try taking away gluten and see if your symptoms improve. I am happy I have that Alcat blood test though. People tend to take me more seriously when I tell them I can’t eat gluten. Tests are expensive, I’ll give you that, but at least I’m not getting judging looks from people who think I’m avoiding gluten because I’m a hipster who jumped on the latest health craze wagon. No people, I’m not buying this 7 dollar loaf of bread because eating gluten free is the cool thing to do. In all fairness though, the health craze wagon has good intentions. Some people opt to avoid gluten by choice to see if it improves other illnesses they have, so test or no test, more power to you especially if you feel better.
Check out my posts under The Knowing to learn more about what gluten is, what it’s in, and why it should be avoided. There will be info that will explain what can and can’t be eaten that I compiled into a handy printable chart. I say this to everyone. Focus on what CAN be eaten. I didn’t post that banner up top with a pic of delicious pasta or blueberry tart to torture you. Delicious gluten free food does exist. So, it’s really not the end of good food, it’s just a matter of finding the right brands or shifting focus by incorporating healthier, organic meats, fruits or vegetables into each meal. Read some tips and vent on the Letting Go page, especially if you’re newly diagnosed. Learn some ways to cope on the Punching Gluten in the Face page. I’m going to make it easy for you to say goodbye to gluten by providing reviews of awesome products, recipes or book suggestions under the Eating Gluten Free page as well. Feel free to share your experience, recipes or suggestions. I don’t claim to be an expert, just a gluten intolerant person who wants to help others with the same problem, so call me out on any inaccuracies in a respectful way please.
Thanks for reading!
Cranney A, Zarkadas M, Graham I, Butzner D, Rashid M, Warren R, Molloy M, Case S, Burrows V, Switzer C., Canadian Celiac Health Survey. Digestive Diseases & Sciences April 2007;52(4):1087-1095