(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…Originally published at our new site Nutritional Anarchy.)
For those who suffer from it daily, gluten intolerance is no joke.
I’m so sick of reading articles written by people — who quite obviously have never personally experienced gluten intolerance themselves — calling it a “fad diet” or a mostly mental “self-fulfilling prophecy” for paranoid foodies 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… 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 in 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.)
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 would 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 also started to break out in what began as pimples. Adult acne, I thought. Freakin’ great. But then these red bumps mutated into something worse than mere 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 the average person would likely consider a pretty 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 rogues, “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.
I’m told the average medical doctor only receives a tiny smattering of actual nutrition education in med school. It seems the allopathic medicine system’s answer to most everything is, instead, just to throw new pharmaceutical concoctions at every problem without actually attempting to cure anything. Just a lot of mitigating the symptoms with drugs that cause even more symptoms.
Makes sense I guess. There’s not a lot of money to be had in cures.
My doctor finally relented and signed off on me taking the test for Celiac disease after I told her she was failing as a doctor if her reason for being one in the first place was her patients’ health. The blood draw was checked for five different types of antibodies. I still remember the self-satisfied smirk on the doc’s face when the test came back and I was at the level before officially testing positive for one specific type. I couldn’t find the paper to scan for this article, but my blood came back with antibodies in all categories across the board. For one in particular, the cut off for positive was “above 16” whichever one it was…and I actually had 16 (or 15.9 or something), so therefore, the test was officially negative. (Never mind the glaring fact that my body was obviously producing antibodies to gliadin at all).
“You’re negative,” she said in an oily self-satisfied tone, all happy with herself in that whole condescending “See, I’m the doctor here, and thus, I know everything,” kind of way. “But I’m sending you to a gastroenterologist for your IBS anyway,” she finished before concluding my appointment, regardless of the fact that I told her multiple times I didn’t have IBS.
I never went back to her after that. I did humor the gastroenterologist, however. I was informed that an official diagnosis would require a biopsy of five or six chunks of my small intestine by undergoing a $1500+ procedure that A) also tends to come back with a lot of false negatives just like the gluten intolerance blood tests do, and B) sounded like a serial killer’s idea of a fun date.
My other option was to, oh, I dunno, just stop eating wheat and see if I felt better. I was advised that would lead to a totally unofficial, unrecognized, “non-medical diagnosis”. Oooh, oh no, not that.
Because if a doctor doesn’t say it on a piece of paper or in a computer somewhere, I guess that doesn’t make it real. Do these people suddenly know me better than I know myself just because they have a medical degree? When it comes to the modern concept of health, it’s as if our common sense or critical thinking skills are not supposed to factor in whatsoever. But allopathic medicine had done such a bang up job for me so far!
Instead of just lining up like I was told to get a bunch of machinery shoved down my throat so pieces of my insides could be chopped out and scrutinized under a microscope, I chose instead to simply stop eating wheat. Crazy, I know.
Then again, I say “simply” even though it was pretty hard at first. Wheat is one of the top three subsidized crops in America, and it’s hiding in a lot more foods than just the obvious breads and pastas and cereals. I also found myself getting really emo about all the food I’d never be able to have ever again…all those foods I was emotionally connected to for one reason or another. It’s weird to say it, but we all do it.
Ultimately though, feeling alive again without constant pain for simply existing was worth it.
Within just a few wheat-free days, my stomach stopped hurting so much just to digest a meal. The bloating, achy feelings plaguing my body subsided some. I could eat without painful and embarrassing “bathroom terrors”. I slept better and actually felt rested for a change.
Within a week, I had actual energy again. My face stopped breaking out so much. My body didn’t hurt all the time. I also started losing weight. I was smiling more.
Within two weeks, I stopped taking all those random medications for everything under the sun. Just tossed the bottles into the trash and I haven’t looked back.
As the months passed sans wheat, it was like I was a different person physically, mentally and emotionally. A year later, and I had literally lost a whole entire person worth of weight.
For someone who was going to the doctor more often than most women get their hair done at the worst of it, I’ve only felt the need to set foot in a medical office again once since then, and that was three years ago. My life is medication-free now.
Looking back, I realize that I lost the whole of my twenties to not just some crazy medical merry-go-round that couldn’t give me my health back if it tried (if you even call that trying), but to gluten. Had I not gone into my doctor’s office armed with hours upon hours of my own personal research, who knows where I’d be (or how much sicker I’d be or how many more meds I’d be on) by now.
Now Consider This…
As we speak, Celiac Disease and gluten intolerance are skyrocketing in this country. It’s a public health problem escalating to such a level that it can no longer be ignored. Most restaurants and grocery stores have gluten free menu items and aisles now, when that didn’t used to be a thing. Research suggests that the disease has risen fourfold since the 1950s, and scientists and medical professionals are scrambling to figure out why. Now it’s an astounding one in 100 who endure Celiac, and millions more of all ages are crippled by gluten intolerance every day. All told, some estimates say as much as 15% of America suffers from this.
Sadly, the figures we have aren’t even remotely trustworthy, because many people dealing with the symptoms listed above don’t realize gluten may be what’s wreaking havoc on their bodies and killing their health. They likely attribute their health problems to something else entirely, even though it might be something as simple as what’s on the end of their forks.
The Mayo Clinic says:
Studies show four times the incidence compared to 1950, with fatal complications if it goes untreated.
“Celiac disease was rare, but it’s now more common in all age groups,” Dr. Murray [a Mayo gastroenterologist] says. Although the cause is unknown, celiac disease affects about one in 100 people. What’s more, Mayo has found a fourfold higher death risk for people with undiagnosed gluten intolerance.
That’s right. We’re talking about chronic inflammation that can create fatal complications. A fourfold higher death risk. When you play out the symptoms for gluten intolerance, many ultimately lead to chronic illnesses and diseases…and diseases lead to death.
Scientific consensus so far points to environmental factors, i.e., what we’re eating now versus decades ago. Something has obviously changed. Wisconsin cardiologist Dr. William Davis, The author of Wheat Belly, wrote:
Modern wheat has been hybridized (crossing different strains to generate new characteristics; 5% of proteins generated in the offspring, for instance, are not present in either parent), backcrossed (repeated crossing to winnow out a specific trait, e.g., short stature), and hybridized with non-wheat plants (to introduce entirely unique genes). There are also chemical-, gamma-, and x-ray mutagenesis, i.e., the use of obnoxious stimuli to induce mutations that can then be propagated in offpspring. This is how BASF’s Clearfield wheat was created, for example, by exposing the seeds and embryos to the industrial chemical, sodium azide, that is highly toxic to humans.
By definition, hybridization, backcrossing, and mutation-inducing techniques are difficult to control, unpredictable, and generate plenty of unexpected results. In short, they are worse than genetic-modification. Imagine we were to apply similar techniques of hybridization and mutagenesis to mammals–we’d have all manner of bizarre creatures and genetic freaks on our hands. I am no defender of genetic-modification, but it is pure craziness that Agribusiness apologists defend modern wheat because it is not yet the recipient of “genetic modification.”
Nutritional Anarchy’s own Daisy Luther notes:
The issue, according to Davis, is that what is sold as “wheat” today is far different than the grains consumed by our ancestors. It has been changed until it bears little resemblance to wheat grown a century ago. The closest wheat available to the heritage wheat is called Einkorn wheat…
The “new and improved wheat” is so genetically different that it is causing health problems…
By the way, USDA scientists admitted to ‘fixing’ the glutens in flour in an archive film from the 1960s called “Miracles in Agriculture” (see below).
Now go back to that symptoms list above. Think about all the people who suffer from some of the less obvious, non-stomach related ones: depression, anxiety, mood swings and brain fog. Right away if those people go to their doctors, they’re probably going to get prescribed antidepressants as the go-to solution (and maybe something for acid reflux if they happen to mention indigestion issues, which will be likely attributed to the depression or anxiety as a secondary issue!).
Something like one in 10 Americans take antidepressants now. With a plethora of pharmaceutical commercials telling people to “ask their doctor today” about having depression, anxiety, insomnia, moodiness, and an inability to think straight, who would actually consider that their diet (and not some nebulous brain chemical imbalance caused by…?) might be the problem, and more specifically, gluten?
I’m an otherwise educated person with a few college degrees under my belt, but the thought that my depression, mood swings, insomnia, exhaustion and general lack of being able to think straight for five minutes together could have at all been related to the turkey on whole wheat sandwich I regularly had for lunch never even remotely crossed my mind (and, really, why would it?) until hours of hardcore personal research led me there.
Why Am I Telling You this Story?
Because, as I said, I’m sick the mainstream media telling people gluten intolerance is just some trendy food fad.
I’m sick of having waitresses act like it’s some big annoying deal when I have to ask a few more questions than the average customer while ordering dinner — sorry if she thinks I’m wasting her precious time, but I’m actually trying to make sure she doesn’t bring something to me that my body will treat as straight up poison when I eat it, causing me to suffer the ramifications for not just hours but weeks afterward.
I’m sick of people acting like it’s no big deal anyway just because they haven’t been there and experienced the suffering firsthand.
While “gluten-free” is sadly becoming commonplace, and therefore normalized, and while I’m sure there are people out there who have stopped eating wheat because they heard it might help them lose weight, there are a lot more people who have stopped eating it because it actually makes them sick.
And more and more people are getting sick from what we’re eating in this country. That’s the bottom line. And many of them have no idea why. Maybe they just feel tired all the time. Or they get indigestion a lot. Perhaps they have a lot of digestive problems, or they get a lot of random headaches, or they have a hard time sleeping at night. Or they have brain fog, especially after eating a meal high in grains. Maybe all of these things.
Maybe you are like me. Maybe you know something just isn’t right. You don’t feel well more than you do. Maybe gluten isn’t a culprit that you would have considered in a thousand years. Maybe my story will help you figure it out.
And maybe we all need to start checking out what we’re putting in our mouths before popping another pill that’s only intended to “treat” our symptoms without ever really curing anything.
While there’s a whole multi-billion-dollar Big Food industry built around selling you something to eat simply because it tastes good, the sole point of eating it in the first place is supposed to be nutrition. That’s a big part of what keeps us alive. If we can’t get nutrients from what we eat because our intestinal lining is all jacked up, eventually we could die.
Just playing off gluten intolerance as some random trendy diet fad or a make believe food hysteria is not only misleading…it is dangerous. It could kill someone.
And it takes away from the real question we need to be asking:
Why the sudden pandemic in wheat-based gut inflammation?
(In part two, I’ll talk more about the science behind all this stuff and what I do eat…I’m still learning, but the $4.2 billion “gluten-free” industry has it’s own problems that must be addressed.)
Further Reading in the Meantime
Think you might be gluten intolerant? Check out this Gluten Sensitivity Intolerance Self Test via the Gluten Free Society.
The information presented on this web site is not intended to take the place of a physician’s advice and is not intended to diagnose, treat, cure or prevent any disease.