by Daisy Luther
(Author’s Note: This is part one of a series I plan to write on this topic. This one is personal. In part two, I’ll bring the science…)
For those who suffer from it daily, gluten intolerance is no joke.
I’m so sick of reading articles written by people — who have not personally experienced gluten intolerance — calling it a “fad diet” or a mostly mental “self-fulfilling prophecy” for those who have decided to exclude wheat from their diets based on some random “food anxiety”.
First, let’s sum up what we’re talking about here. Celiac Disease is an an autoimmune disease; that means the body has an immune reaction to eating the protein gluten. The person ends up getting attacked by their own immune system. Sufferer Jordan Reasoner summed it up really well:
Celiac Disease triggers a war inside your body. Celiac Disease is an autoimmune disease. Autoimmune diseases “arise from inappropriate immune response of the body against substances and tissues normally present in the body.”
I really like that word “inappropriate”… I agree it’s inappropriate that my immune system, which is supposed to protect me from the outside world, is actually mistaking some part of my body as an evil pathogen and attacking my healthy tissue.
For people who have been diagnosed with the full-blown disease, not eating gluten to a Celiac is like a diabetic’s insulin requirement. If a Celiac eats gluten, it could literally kill them.
Being gluten intolerant is not quite to that level, but it can also make a person very ill when they eat gluten. Food Renegade‘s Kristen Michaelis explains gluten intolerance clearly:
It isn’t a food allergy. It’s a physical condition in your gut. Basically, undigested gluten proteins (prevalent in wheat and other grains) hang out in your intestines and are treated by your body like a foreign invader, irritating your gut and flattening the microvilli along the small intestine wall. Without those microvilli, you have considerably less surface area with which to absorb the nutrients from your food. This leads sufferers to experience symptoms of malabsorption, including chronic fatigue, neurological disorders, nutrient deficiencies, anemia, nausea, skin rashes, depression, and more.
If you remove gluten from the diet, the gut heals and the myriad of symptoms disappears. (source)
In short, if the lining of your small intestine is damaged, you have a much harder time absorbing nutrients from your food. When that happens, it can make you all kinds of sick, manifesting itself with a glorious array of flat-out horrible health problems that continue to get worse and worse the longer gluten is consumed.
The Symptoms of Gluten Intolerance
While many people primarily connect gluten issues with digestive problems such as acid reflux, bloating, cramping, extreme or persistent flatulence, diarrhea and even nausea after eating it, in reality, there are a whopping 200-plus symptoms that can manifest as a result of gluten intolerance.
For example, did you know gluten intolerance can also show up also show up as:
- extreme fatigue, tiredness and exhaustion
- weakness (due to vitamin/mineral deficiencies)
- mood swings, chronic irritability, depression and/or anxiety
- headaches, leading to migraines
- poor concentration and/or brain fog, or a “clouding of the thinking process”
- eczema or other types of skin rashes
- hair loss
- weight gain or loss
- joint pain and muscle cramps
- fertility issues (such as abnormal menstrual cycles), PMS issues, polycystic ovarian syndrome (PCOS), endometriosis
- neurological issues, including dizziness, tingling in the extremities, difficulty balancing, “clumsiness” and even seizures
- frequent canker sores (apthus ulcers) and dental enamel deficiencies
- urinary tract infections
- bruising easily
- blood sugar irregularities
- night blindness
- respiratory problems and asthma
…and the list, literally, goes on and on.
My Gluten Story
I used to be straight-up obese. And I wasn’t just overweight, but I was also depressed and tired all the time. I probably tried a bajillion diets over the years, everything from the grapefruit diet or the oatmeal diet to taking more than my fair share of nasty pills, powders and shakes. I know bajillion is not a real number, but after as many times as I modified what I ate and drank to try and “fix” myself, I feel like it should be.
Still, it seemed there were days I could eat nothing but crackers and drink only water and still manage to somehow gain weight. Exercise didn’t affect the numbers on my scale one iota. The pounds packed on easily and wouldn’t come off for anything.
During my early college years, I ballooned to almost 245 pounds. (I’ll forgo the story on what that does to a person’s self-confidence and social life just as they come into adulthood, but it’s safe to say, I had body issues.)
Me at my heaviest, circa 2002. There aren’t a lot of pictures of me back then because I typically hid from anything that even remotely resembled a camera.
When I ate, I noticed that I frequently felt sick shortly afterward, right around the time my food began to digest. It would start with feeling bloated. Painfully so. Then the cramping. Sometimes I would have to run to the bathroom right away, suddenly, we’re talking emergency level. In an attempt to avoid getting graphic here, let’s just say I would end up sick from one end or another. It was painful. Terrifically painful.
My bathroom cabinet was filled with a wide array of over-the-counter stomach meds. Stuff to help you go to the bathroom. Stuff to help you stop going to the bathroom. I kept feeling horrible and I kept going back to the doctor and I kept getting labeled with one wonderful new disorder after another. My gallbladder had to be removed. After the anesthesia wore off, I was told I almost died. I wasn’t even 25 years old.
Then I found out that I couldn’t have babies. The doctors did not know why. After a battery of uncomfortable tests, they simply told me my ovaries “weren’t working” for some mysterious reason. It was sometime later that I was also diagnosed with polycystic ovarian syndrome (PCOS) and endometriosis, two reproductive terrors for which I had multiple painful removal surgeries where they cut you open and use a laser to burn cysts off your uterus (which they can only do so many times because it just keeps coming back anyway). I spent a lot of my days alternating between writhing on the floor in agony and sobbing in the fetal position. My life became a nightmare I couldn’t wake up from, and every day was exactly the same: pain.
After being diagnosed as insulin resistant, I went on the South Beach diet, which advocates mostly meat and vegetables. I lost some weight (maybe 25 pounds?) and I felt somewhat better. Suddenly, like magic, I got pregnant. But I was still frequently sick after I ate and I couldn’t figure out why. I really was trying to eat what I thought was “well”. I had a lot of vegetables, fruit and lean meat in there. I cut out sweets for the most part. I had not stopped eating wheat, however. Whole grains were supposedly a healthy part of any balanced diet…right?
My symptoms continued to worsen over time. Soon I felt tired most of the day, every day. When I was paying attention to myself, I realized that a lot of the time my body just hurt. Most days were sprinkled with a nice little “PMS glaze” all over them, regardless of my actual female cycle. I was randomly moody for no reason at all. Often sad. Bummed out just because. Stress came easy and over things that normally wouldn’t matter. I began to have an increasingly harder and harder time falling asleep at night.
In the shower, I noticed my hair began pooling around the drain more and more. I started to develop thinned areas where I could see my scalp if I tried to wear my hair pinned up, so I never did. Eventually I began cutting it, and then cutting it shorter and shorter. As it continued to come out, finally I just said, “F— it,” and went to a wig store.
My face on gluten.
My face also started to break out in what began as pimples. Adult acne. Freakin’ great. But then they mutated to something worse than acne — large red welts that made washing my face a delicate, painstaking process because touching my skin hurt as if it had been burned.
(Interestingly, both my shampoo and conditioner contained hydrolyzed wheat protein and my breakouts lined up with the shape of my haircut. Hm…)
I never wanted to eat anymore but obviously if we don’t eat, we die, so I had no choice. I also got sick all the time…constantly coming down with sinus infections…upper respiratory infections…ear infections. Blood tests kept coming back with vitamin deficiencies, even though my doc had me on a huge vitamin D dose that I had to pick up from behind the pharmacy counter.
I know now my body was starved for nutrition, which could explain why I always felt hungry even though I was eating what by the average person would seem like it should be a decent diet and faithfully taking my vitamins (wrong on both counts, but that’s a different article).
I was on seven different prescription medications for all manner of issues across the spectrum, and my doctor was about to diagnose me with irritable bowel syndrome (IBS) and prescribe me yet something else on top of it all. I had already spiraled down into the dark hole of modern medicine. I couldn’t discern what side effects were what anymore. Even without being all doped up, I felt like I was losing my mind — a barely there zombie sleepwalking through my life instead of actually living it.
…and I wasn’t even 30 years old.
Finally one day I said, no f’n more. I sat down at a computer and didn’t get up all night except to pee. I didn’t sleep. I read, I researched. I would find the answer or die trying.
That’s how I came across gluten intolerance and Celiac disease. All my symptoms — every single one — was listed. Then it hit me. What I was eating was wrecking my whole life.
The next day, I made an appointment and went into my doctor’s office with a printed off stack of scientific studies the size of a dictionary, highlighted and underlined. I knew the blood test for the anti-gliadin antibodies was costly (it was over $300 at the time and insurance didn’t cover it), but I was determined to make my case for it anyway.
I remember the moment my doctor told me in her snarkiest voice reserved for rogue patients, “I don’t let my patients diagnose themselves over the Internet” — a response to her turning down my request for the ridiculously expensive blood test I was willing to pay out-of-pocket for. “Fine,” I replied as I stood up to walk out, “then I’m getting another doctor.”
Why? Because it’s not normal for 30-year-olds to just fall apart, to have more “disorders” than fingers, or to be on more medications than a nursing home patient with one foot in the grave.
My quality of living at that point was near zero. It was actually explained to me that, due to all my supposed “chemical imbalances,” I would just have to accept the fact that I would probably need to be on all of these medications for the rest of my life.