Every now and then I am reminded of, what has become old hat to me, the new “shiny object” (to avoid) for some. This particular shiny object I am referring to is Gluten.
Before I even venture down this path, I want to be very clear about something; while I may have done enough independent research, out of sheer necessity, and visited enough healthcare facilities to be awarded an honorary degree, I am NOT a Doctor. I’m not even a Phlebotomist.
All my life I’ve been a bit of a medical oddity. There’s been nothing textbook about my body, and the way it responds to “modern” medicine. I could ramble about my medical history for days. Unfortunately, no matter how many times, or how many people have attempted to dissect it, the puzzle pieces never seem to match up. I won’t bore you with my complete medical history, as there simply isn’t enough Ritalin in this world to hold anyone’s attention for that. Not even my own. Yes, you can add Attention Deficit Disorder to that loooooooong list.
I’m going to focus on my experiences that led to a diagnosis of Celiac Disease, and tackle this whole Gluten-Free phenomenon that seems to be front and center these days.
In 1999 I began having a number of miscellaneous, inexplicable symptoms. These symptoms started out vague, and garden variety, like fatigue. Gotta love that one! Then there were changes in my skin, hair, and nails. (GASP) For a professional Hairstylist/Make-Up Artist (at the time) that was enough to send me to the Doctor!
As time went on, the symptoms continued to get more bizarre, and remained a mystery. The more Doctors I went to, the more “Specialists” I was referred to, and the more random diagnoses I was given. I wasn’t a big fan of all these labels that I was getting slapped with, so that’s when the research began. I came to the realization that no one was going to look as carefully at the pieces to the puzzle of my health as I was. So, I took it upon myself to keep records, take notes, do extensive research, question the diagnoses that were being given to me, and oppose some of these theories.
I ruffled a LOT feathers in the process, but eventually I learned to stand up for myself, and command the care that a patient *should* be given.
Things got downright UGLY at times! I even stole my own medical records once, from a “Doctor” that REFUSED to give me copies of my biopsy results, because he was SALTY I had gotten a second opinion. (apparently some “Doctors” have fragile egos underneath that God complex of theirs) I’m still not sure who behaved more childish that day, but ultimately I got what I needed. I now DEMAND copies of ALL test results and lab-work. FYI, a GOOD Doctor (boy are they few and far between), who actually cares about their Patient’s well-being, is more than happy to give you those records without making you jump through hoops, sign numerous releases, or charge you $25 a pop.
In October 2000 my hair had gotten so incredibly frail that when I colored it, it had broken off at the scalp, and I was left with fists full of freshly dyed locks. (DOUBLE GASP! OMG! WTF?) Unless it’s a deliberate plan of attack, NO woman wants to feel stubble on her own scalp!
I began experimenting on my own hair when I was 11 years old. I’ve gone from fire engine red to platinum blonde, black cherry to pink, and EVERYTHING in between! Add some perms in there, and it’s safe to say, my hair has been to HELL and BACK. There was NOTHING unusual about this particular incident that should have caused this, and I of all people should know!
What else was a girl like me to do, other than go back to my natural color (whatever that was), cut it short and go on a diet!? (tee hee) Contrary to popular belief, I’m not a girly girl. I wear my smoke and mirrors “beauty” like armor! It’s just another tool in my toolbox, right next to my drill. When something is broke, I fix it. If it can’t be fixed, I make it look pretty. If it can’t look pretty, I make it look prettier than it is, and cling desperately to my sense of humor.
It’s worth mentioning that this was the ONLY time in my entire life that I attempted to follow ANY sort of “Diet”. Lucky me, I chose the Atkins Diet. Well, I got what I wanted! I lost weight, AND I got to continue my gluttonous ways! Then came the bone pain (bone pain is something you really can’t comprehend unless you’ve experienced it…OUCH), SEVERE fatigue, and TOE CURLING stomach pains that sent me to the Emergency Room a few times. One of these ER visits resulted in a diagnosis of Acute Pancreatitis. (you do NOT f@ck with the Pancreas)
When I went back to the Gastroenterologist, he immediately dismissed this diagnosis, without even giving it ANY thought. (there’s that ego getting in the way again) He insisted it was completely inaccurate. Elevated lipase and amylase levels cannot be inaccurate. They either are, or they aren’t. Aside from that fact, when I read what causes the pain from Pancreatitis, I knew that THIS was what I was feeling. I was NOT experiencing GERD. It was NOT Gastritis! NO, it was NOT lactose intolerance, IBS, indigestion, or ulcers! All of which I had or have had…but the TOE CURLING pain was MUCH different! My pancreas was digesting itself! OUCH! OMG. WTF? MAKE IT STOP! Pleeeeeeeeeeeaase!?
I am a girl who once walked around with a broken arm for a week before going to a Doctor. I’m not claiming to be a total badass, but I’m not a pansy! If I say it hurts badly, it does! And, if I’m on the floor, in a fetal position, begging to be taken to an ER, it’s NOT acid reflux!
![bacon-grease-biofuel[1]](/wp-content/uploads/2013/01/bacon-grease-biofuel1-300x225.jpg)
I later discovered that there have been many links between pancreatitis and celiac disease. Although they are not well documented, nor are they fully understood (here comes that medical oddity thing again). I didn’t discover this until long after my recovery, at which point I had committed fully to my Gluten-Free life. So, since I have no desire to go back there, I never really dug any deeper on that topic.I’m not entirely certain how the three correlate, but in retrospect, my instincts tell me that the Atkin’s Diet, Pancreatitis, and Celiac Disease were all somehow connected. As I said before, I am NOT a Doctor. However, I have a hunch that… eliminating the carbohydrates from my diet, shocked my system a bit. The RIDICULOUS, sudden increase in dietary fat created inflammation in my pancreas, which put obvious stress on my system, and made a genetic flaw (Celiac Disease) that was playing peek-a-boo, surface like a bat out of hell. What amazes me is how logical this theory sounds, and yet none of the many “Specialists” I saw ever suggested it. Clearly incessant amounts of cheese, bacon, macadamia nuts, pork rinds and beef for a girl who almost never ate red meat or swine, did not agree with my innards
The Pancreatitis diagnosis was what brought things to a climax for me. I was at my breaking point! My mind, body and soul just could not take it any more. The pain was EXCRUCIATING! The inability to eat, was unbearable. The Doctor visits were absolutely exhausting! I felt completely and utterly defeated. I decided that I needed to step back and trust my instincts a bit, but I was such a shell of human that I didn’t really know how to do that.
In a little over one years time, I had gone from a healthy 125lbs to a vacant, cavernous 100lbs. My goal was 115lbs. During this time frame, I lost bone density and SERIOUS amounts of muscle mass! While 100lbs isn’t exactly gaunt for a girl who is 5’3″, there is a difference between someone who is naturally thin, and someone who is sickly and emaciated. I was emaciated! I was no longer “dieting” at this point! As my symptoms progress, the ONLY thing I could eat, was broiled chicken with NOTHING on it. The intense stomach pains I was getting would occur about 15-30 minutes after I ate pretty much anything…except broiled, naked chicken. A girl can only eat so much chicken before she cracks.
Fortunately the planets aligned just so, and a Doctor fell into my lap. I Met another Make-Up Artist who was engaged to a Gastroenterologist who specialized in something called “Celiac Sprue”. She had a little pillow talk with him about how “Special” I am, and he insisted I come see him. Of course I had to drive 2 hours to get there, It’s me!
By this point, I was so apprehensive about my healthcare, I wasn’t going to trust just anyone. I did my homework before I even got there. I had questions, but I was also SO spent I was willing to throw myself at anyone’s mercy if they seemed remotely trustworthy. I was DESPERATE for some hope!
Ding-ding-ding-ding-ding! He looked trustworthy. He was handsome, polite, empathetic, and he had kind eyes. He spoke to me like a peer, and was not condescending. He could have told me the cure was to eat my own stool, and I would have. I was *that* desperate. THANK GOD, he merely instructed me to eliminate gluten from my diet! Whew!
In February of 2001 I was officially diagnosed with Celiac Disease. This diagnoses has been monumental in my life. Bittersweet, gut-wrenching, heartbreaking, and a mixed-blessing all together. Only time will prove it to be more bitter or sweet. You see, my family has a VERY strong history of cancer, thyroid disease, diabetes, heart disease, arthritis, osteoporosis, and obesity. All of which are often linked to Celiac Disease. I have a 3 inch scar on my neck, from a thyroid lobectomy (incidental cancer…wait, WTF?), to remind me that history repeats itself. The defiant, stubborn little girl in me is determined to be the one to break that cycle. I’m not sure if the path I’m on will have any impact on my destiny or my future health, but I certainly hope I’m doing something right! Fingers crossed…wish me luck.
While I was already following a “Gluten-Free” diet for a good 6 months before my official diagnosis, the label was brand new to me. A label that was a bit overwhelming, and hard to digest initially. (pssst, that “digest” thing, was supposed to be funny)
Let’s just imagine for a second, for those of you who are living a glutenous (gluttonous) life… You wake up one day; and you are told that you can no longer partake in the pizza party, no birthday cake, no pancakes, no biscuits, no muffins, no bread, wuuuht?…no *Italian* bread?, no soy sauce (WTF?), no soup (for real?), no licking stamps (huh?), no beer (you HAVE to be kidding me!), no veggie burgers (Seriously!?). NO, NO, NO!!!!!!!!!!! NOOOOOOOOOOOOO! Back in the day, Betty Crocker did not make GF cake mix, thank God, as no one should be eating that mess! GF “comfort foods” (oxymoron) had to be ordered from a handful of companies via the internet, it was inconvenient, pricey, heavy as a brick, hard as a rock and tasted downright disgusting.
▶ Celiac Disease Defined ◀
Celiac Disease, or CD is sometimes called Celiac Sprue, Tropical Sprue, Gluten Sensitive Enteropathy… They are all a little different, and yet pretty much the same. I’m going to dumb this down a bit, because I think there has been way too much over-complication of it all!
BTW, just a reminder, I’m not a Doctor, Nutritionist, Gastroenterologist, nor am I a Scientist!
All of this is far more complicated than I will make it sound, but for my little blurp (that’s turning into a novel) it really isn’t necessary.
Celiac Disease (CD) is NOT an allergy, it is a gluten intolerance/sensitivity. More specifically; it is an autoimmune disorder of the small intestine caused by a reaction to gliadin. Gliadin is a gluten protein found in wheat, barley, and rye. (Not oats…that’s a misconception!) For someone who suffers from CD, exposure to gluten in the small intestine initiates an immune response, causing an inflammatory reaction that results in blunting of the villi. Villi are tiny hair like projections in the lining of the small intestines that are responsible for absorbing the nutrients in the food that we ingest. When these villi are blunted, their ability to absorb the nutrients from your intake is compromised. As you can imagine, this is not a good thing. Ultimately this leads to malabsorption problems, and that’s when the REAL fun begins!
Basically you are eating, and starving all at the same time. Yay, how fun! Your body can respond any number of ways to this situation. When one says you are starving, the assumption would be that this person would be emaciated, but this isn’t always the case. You can be getting the volume and calories from your diet, and not the nutrients, so you can be malnourished AND obese. HELLO, have you met the average American?
Here’s the thing about CD and the damage that occurs. Since it is NOT an allergy, you can NOT just eat *one* bite of a glutenous cupcake, deal with a few hives and move on. The damaged tissue can take months, even years to repair itself, and in some cases it can be irreversible.
February 2001 ~ Me with my shiny new label. So now what?
Back in 2001, NO ONE knew what gluten was. Every. Single. Time. I told someone I couldn’t eat WHEAT, they said, “Oh, you’re a vegetarian?”. OMG, how annoying! I am NOT, nor will I ever (or at least I don’t think I will be) a vegetarian! One thing that was SO incredibly shocking to me, was the expression on peoples faces when I explained my affliction to them. Sheer HORROR, sympathy, and devastation, almost as if someone had died. I reached a point where I actually considered printing out an explanation of what Celiac Disease was, because I was SO sick of explaining my “specialness”. But, then it occurred to me that it really didn’t have to be that complicated.
Eh em, does anyone remember that WHOLE FOODS exist? Fruits, Veggies, Fish, Chicken, Eggs, Nuts, Seeds…ALL Gluten-Free…AND Glutton-Free! The added bonus is, they don’t need to be labelled as being Gluten-Free! I would write a book on Gluten-Free Living, but it only needs to be one page long! Let’s be honest here, while grains make great comfort food, they are a bit overrated. It’s amazing to me how much money we Americans spend on them, considering they are sort of a poor man’s food. We process them, pretty them up, package them, pimp ’em out only to pig out on them so they plump us up.
Speaking of Comfort Food…
I have been seeing a LOT of companies capitalizing on this shiny Gluten-Free label, and the ignorance and/or confusion of us, as consumers. There are some reasons why accessibility to these products is a good thing, but for the most part, it’s ALL BAD!
I’m no prophet, but I can’t help but smell that whole Fat-Free wave coming on that swept the nation not too long ago. The only reason I think this is a good thing, is for those children who NEED to be on a GF diet, so as not to deprive them of “fitting in” with all the other glutenous/gluttonous Americans. Also, to make the lives of their parents a wee bit easier, and to provide occasional indulgences to us “special” people who want to partake in some good old fashion comfort food. Aside from that, I think it should go back to being online purchases only! (Yup, that’s how it used to be, and it was hard to come by!)
Now, here’s why I think all this prepackaged nonsense is SUCH a bad thing.
In case you have forgotten, I’m NOT a Doctor. (but I could probably play one on TV) I have no credentials in anything special except Kettlebells, Cosmetology, Personal Training, and Parenting. The Parenting one, in my opinion bumps you up to an honorary Nurse…but NO, I’m not that either.
In general, prepackaged nonsense is a bad thing. So, when you slap a shiny new label on it like “Gluten-Free”, it gives it the illusion that it is some how more healthy than the gluten containing foods. (YIKES) This is bad! Additionally, I find that when someone is eating something with the false notion that it is slightly less sinful than the original version, they tend to overindulged a little bit more. (YIKES) It’s getting worse. Most GF foods are not enriched with vitamins and minerals the way that our usual, mass marketed, prepackaged foods are. So, while they aren’t necessarily less nutrient dense, the final product is because it hasn’t been beefed up like your “Wonder Bread”. The grand finale is that, GF foods, do NOT taste nearly as good as the original sins without additional amounts of FAT, SUGAR and SALT to overcompensate for the inferior texture. (GASP)
As if that isn’t enough, GF foods also cost MUCH more than gluten containing foods, and they tend to be higher in calories due to their density. (that overcompensation bit again) A loaf of my GF bread weighs 1.5lbs, costs $5.99, has 110 calories PER slice, and tastes like total sh!t without a LOT of bells and whistles! I had to purchase a $250 Panini Press just for my “special” bread. I have to spray said bread with Canola Oil before pressing ONE SLICE, just to get a somewhat palatable taste. Whew, that’s a LOT of work to recreate a little fake comfort food! Oh, and if you are wonering, it STILL tastes like sh!t. 🙁
With all this to consider, why on earth would someone who is not forced to adhere to a strict GF diet, EVER go GF? Unless of course they are going the Whole Foods route.
I get it, shiny objects are distracting. If anyone *gets* distraction, it’s me! Going GF *could* be a phenomenal choice, IF you choose to rethink the way you eat all together. Now, the other issue at hand is the ridiculous over-diagnosis of Celiac Disease! The only PROPER way to diagnose this disease is via THREE BIOPSIES of the small bowel! Yes, I said THREE! (It sounds WAY worse than it is!) NO, blood-work is NOT an accurate diagnosis, it’s only the very fist step in the process. After your blood test comes back positive, you need the first biopsy to prove blunting of the small bowel. If that is positive, then you remove ALL gluten from your diet for 6 months and biopsy the tissue again in order to prove the blunting has improved on a GF diet. Then you reintroduce gluten into your diet and re-biopsy to prove that the gluten exposure is what caused the blunting in the first place…and then you have an accurate, positive diagnosis. There are other things that can cause blunting which can result in absorption and malnutrition.
My suggestion is, if you are going to rock a label like *this*, make a commitment like *this* for the REST OF YOUR LIFE, I highly recommend you get an accurate diagnosis the first time! Otherwise, you will unnecessarily be eliminating a LOT of healthy food options from you diet! NO, not Wonder Bread! Surprisingly, there are numerous healthy foods that do contain some gluten in them.
One thing that I would like to revisit is this instinct thing…
I often lose focus of this, in all aspects of my life. I think (what do I know) as Humans in this modern world, with all it’s distractions and shiny objects, we tend to lose touch with our most primitive instincts. No matter how intelligent or idiotic you may be, we are gifted with these AMAZING instincts, and yet we go to great lengths to drown them out. When I look back on all the events that occurred to me, it’s hard to ignore the fact that my body was DEMANDING exactly what it NEEDED to heal itself. Bare, naked, broiled chicken! Zero fat, high protein, and no carbohydrates. You see the treatment for severe, acute pancreatitis is to be hospitalized, receive fluids and nutritional support through an IV line, so your pancreas can recover. Additionally, this bare naked, broiled chicken was also 100% Gluten-Fee! Huh, how ’bout that?
Perhaps my instincts had me on the right track when I chose the Atkin’s Diet, as it’s incidentally gluten-free. But, then my gluttonous nature heard that bacon calling my name, and it all went downhill from there. So even early on, when I was just feeling particularly “fatigued” it’s possible that my instincts were whispering to me to make a change. And, as usual…I failed to listen. So, then the instincts spoke louder and louder, and ultimately forced me to react to what I refused to hear. I have a tendency to ignore, and second guess my instincts. Fortunately AND unfortunately, my instincts seem to be the superior intelligence in *this* being. Unfortunately for me, it takes a few tries before I remember to listen to them again. I’m a work in progress! 🙂
So, the moral of the story novel is… Next time you see a bright, distracting, shiny object…
Before you drop everything, and dive in; step back for a moment and listen to your gut! (pun intended)
⊱ Please share your experience, ask questions, and leave comments! ⊰
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Kristy Mox
My journey in life has been paved with cobblestone, leading to dirt-roads and filled with detours but lo and behold, I found the key to happiness! Fitness has been the glue that holds me together; it's what has enabled me to stay healthy and retain my sanity while raising 2 small kids single-handedly, all while managing to fit into my jeans and achieve rockstart status on the monkey bars at my kid's school playground!
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