“Holy crap!” she said, not so under her breath.
“Here is a test result from nearly four years ago that clearly shows you have very low cholesterol.”
“Oh. Thank heavens. That’s good.”
“Well, yeah, good in that you’re very unlikely to get heart disease. But, it’s too low. Look. Right here. The lab even put a big “L” next to the number. Your cholesterol is below the normal range.”
Cholesterol that was too low? I had never heard of such a thing. “What does that mean?”
As my new doctor explained the importance of cholesterol in a healthy body and how normal levels typically lead to increased energy, I glanced over at my thick medical file. I’d had this stack of papers in my possession for nearly two months in preparation for a move across the country, but I might as well have been reading another language. Sure, I can pinpoint each visit and my presenting complaint, but beyond that, count me out. And so, like so many before me, I trusted by doctors. Until now.
At this very moment, I looked at a piece of paper in which at least one number now made sense and clarity began to surface. This one number should have been a warning sign to my doctors that explained my presenting complaint at that visit and many others – fatigue. I’m sure the doctor that read the result was just busy, I reasoned. Maybe she missed the one number amidst the stream of so many others. As I continued to rationalize, a small bit of personal handwriting jumped off the page and smacked me right upside the head. Right there, next to the lab imprinted “LOW”, my doctor had written “All looks good. Send letter.”
She hadn’t missed it. She had seen it. She had even written a personal note next to it.
Are you freakin’ kidding me? All looks good?
As I sank back in my chair, a mix of emotions welled up along with a whole host of questions. Every visit with every doctor over the past 14 years suddenly came into focus, one-by-one. I began to question if any of them really knew what the hell they were doing. I understand that a low cholesterol reading doesn’t necessarily mean I should start digging my grave, but let me relay another doctor visit from a different time, with a different doctor and you’ll start to see my concern.
During the spring of 2007, I called my doctor’s office (the one that missed my low cholesterol reading) for an appointment. I had been quite fatigued of late and had somewhat generalized abdominal pain. The receptionist informed me that my doctor had recently moved, overseas no less, but assured me that her replacement within the same group was fantastic and that I would not be disappointed.
Not wanting to go through the process of locating another practice and waiting what often seemed like two or three months to see a doctor just because I was a “new patient,” I agreed to see the replacement physician. After all, I could get in to see this doctor in just two days. The receptionist informed me that I am, indeed, lucky to be able to see the doctor on such short notice because he is in such high demand.
Dr. Grant is a physician that I will not soon forget, primarily for the sheer abundance of ego that surely entered the examining room a full five minutes before I saw his physical body. As he walked into the room, he held a BlackBerry in one hand and an electronic drug dictionary in the other. He curtly asked me what my problem, ahem, symptom was. I explained that I had been feeling terribly tired. That was basically it. Fatigue.
“Hmmmm.” Then, I see him click, click, click through his little drug finder. Apparently I hadn’t given him enough information because he eventually turned backed to me and grudgingly got up to perform the basics. I opened my mouth and said “ah,” took deep breaths and lay back so he could press on my stomach in a few different areas. Nope — all feels fine.
When he was done and removed his hand from my abdomen, I nearly screamed. The pain took me so off guard that it took me a few seconds to mention it to him. In that time, he had already sat back down and was busy clicking away on his little drug finder again. Finally, I squeaked out, “Ow. Why did my stomach hurt when you took your hand off? That really hurt.”
“Yes, that is strange,” he agreed. Then, seeming to dismiss the pain asked, “What about PMS?”
“PMS? Yes, I get that. It has been getting a little worse as I get older.
I could tell he was on to something. “Mood swings?”
“Probably. But, you’d really have to ask my husband,” I offered. I thought it was funny.
He smiled politely. Click. Click. Click. Suddenly, he looked me in the eye for the first time since he entered the room. I could tell from his expression that he had hit pay dirt. His little drug finder had just diagnosed me.
“Prozac” he says.
“You mean, Prozac, as in the anti-depressant, Prozac?”
“But, I’m tired, not depressed.”
“I think you have PMDD. In laymen’s turn, bad PMS. Take Prozac for two weeks each month – the two weeks leading up to your period.”
“But, will it help my fatigue?”
“Maybe. Let me go get you some samples.”
And, with that, he was gone. He returned several minutes later with a paper bag full of Prozac samples and sage advice to not worry so much about the fatigue I had been experiencing, after all, “You’re a working mother. It’s quite common to be tired.”
Back in 2005, I may have missed the low cholesterol reading, but as I left Dr. Grant’s office that day, I knew, without a doubt, that he was an idiot. What I didn’t know, however, is what was wrong with me. But, it was only a matter of time. Within a short period, I was in the Emergency Room getting scheduled for an emergency appendectomy. I later learned that of the top three signs for appendicitis, I had displayed two in his office that day – fatigue and abdominal rebound pain. The third, elevated white blood cell count, could have been determined if he had taken the time to order a simple blood test.
But, back to reality. Back to today. Back to sitting in another chair in another doctor’s office for what felt like the millionth time to beg and plead someone else to hear me. Suddenly, she shifted the conversation. Her voice, somewhat in the distance, called me back to the room.
“When was this test taken?”
“I’m sorry? What test?”
“This test to check for gluten sensitivity. When was this taken?” Clearly, she had already moved on to a different page representing another visit to the doctor.
“Ummmm…last year, I think. I remember begging my doctor to run the blood work. I had been doing some research and came across some information about Celiac disease. I decided, in an effort to fix heartburn I was experiencing, to try removing gluten from my diet.”
“But, this test never comes back positive. It has a very high false negative rate.”
“Yes. I’ve heard that.”
She locks on to my eyes. “I don’t think you understand. Your test came back positive. You have to stop eating gluten. Now. Today. You can’t eat gluten anymore. I don’t care what you call it. You can call it Celiac Disease or Gluten Sensitivity. It really doesn’t matter. You need to stop eating gluten.” At that point, I faded out again as I went back to that day in the doctor’s office when I sheepishly asked my doctor to order the test. I had been experiencing regular heartburn for several months. I tried taking an over-the-counter antacid and while it got better initially, within a day, I was worse. Much worse.
Upon discussing the pain with my doctor (not Dr. Grant — you can be sure I never stepped foot in one of his examining rooms again), he suggested I continue with the antacid. Despite the pain I felt, which was like a steel rod going through my body at the base of my sternum, I continued for another week at my doctor’s request. I finally stopped on my own when the discomfort became unbearable. During this time, I also tried Acupuncture, deep tissue massage, Healing Touch and Cranio-Sacral therapy. Each of these therapies is fantastic, but none cured me of my heartburn.
Pain is a powerful thing in your life. It can either debilitate you giving you good reason to lie around all day and do nothing or it can inspire you to get up off the couch and take control of your own health. Ultimately, I opted to get off the couch and do some research. As I began looking at the causes of heartburn, I was surprised to discover that heartburn is caused by either too much acid in the stomach or too little.
Too little? This was news to me. But, there is an easy test. When you experience heartburn, go drink some lemon juice. If you feel worse, you have too much acid and can probably be helped by taking an over-the-counter antacid. If, however, you feel better after drinking lemon juice, you have too little acid. In this condition, taking an antacid only compounds the problem. This was exactly what I was experiencing. This means that all the time I was taking an antacid (on the advice of my physician) I was actually swallowing pills that were making me worse. The only thing my research couldn’t tell me was what to do to fix the problem.
During this time, I happened upon a book that in a few short minutes, changed my life. I say “happened upon” because I wasn’t looking for anything in particular. This was one of those hot summer days when the kids and I spent an hour at the library for some good, quality, air-conditioned entertainment. While the kids were looking for their own books, I happened to find myself in the Diet & Nutrition section. I was here that I saw a book that really jumped out at me. I wish that now I could remember the title, but that part is gone. What I do remember is sitting down and turning to the first page. In the first few paragraphs, I saw myself completely. The descriptions that were provided could have been pulled directly from my medical charts.
The book discussed the symptoms and ramifications of living with Celiac Disease. I didn’t know what that was, but I knew they were talking about me. I read about how people with Celiac Disease, before they are diagnosed, begin searching for ways to feel better because, frankly, they become sick and tired of feeling sick and tired.
It went on to describe people who begin eating 100% whole wheat and opting for healthy choices such as whole wheat pasta, only to feel worse. It talked about people who try to limit their calories and exercise more, but none of it makes them feel better. In fact, it is when they try to eat healthy that they begin feeling worse.
Not wanting to seem like a hypochondriac, I quietly eliminated wheat from my diet. I was very new to this whole “gluten-thing” and didn’t understand it much beyond the “don’t eat wheat” part. But, amazingly, I began to feel a little better.
I was so proud that I made an appointment with my doctor to tell him the news. I had been off gluten for two weeks and I felt pretty good, comparatively speaking. It actually took me the entire appointment time to ask him to run the Celiac Disease blood panel. To say I “asked” him is probably not very accurate. Rather, I stepped all around it.
Opting for a subtle approach, I quietly said, “I’m not saying I have Celiac Disease, but, I haven’t eaten gluten for two weeks and I feel a little better. What do you think that means?” I was very coy. It really wasn’t fair to my doctor. If I wanted the blood test, I should have just asked him to order it. I don’t know why it never feels that simple when you’re sitting in the doctor’s office. After all, I think most of them want to help you. They want you to feel better. And, any insight you can provide into your own health and well-being, I’m certain, would be warmly welcomed. So, why then, do we feel the need to tip-toe and then get mad when they don’t read our minds. Seems silly, looking back.
But, my doctor heard me and ordered the test. Of course, as he was writing out the order he felt compelled to say, “I don’t think you have Celiac either, but if this makes you feel better, let’s take the blood.” Not exactly my definition of compassion, but the test was ordered.
A month went by and I didn’t hear from my doctor. Of course, taking responsibility for my own part in all of this, I didn’t call him either and I started eating gluten again. I was in the doctor’s office again a month later for a routine acupuncture session. During this appointment that he mentioned, almost as if in passing, that I had tested positive on the Celiac Disease blood test. Then, he scolded me for not calling him to ask for my results. Ignoring his proverbial slap to my hand, I asked him what the positive test result meant. His response was. “I’m not sure. This test almost never comes back positive. But, since you’re feeling better, I wouldn’t worry about it.”
As I relayed this story to my new doctor, she laughed a little and informed me that out of 100 people who suffer from heartburn, only 1 of them has symptoms due to over-acidity. The other 99 people with heartburn suffer because of too little acid.
What I know now and wish I had known then is that Celiac Disease affects approximately 1 in 133 Americans and heartburn is one of the more than 250 symptoms. There are even more recent estimates guessing that 1 in 7 people have some sort of sensitivity to gluten. So, why don’t we hear more about it? Unfortunately, our health care providers are not connecting the dots to make accurate diagnoses. Instead, the diagnosis rate is closer to 1 in 2,700.
My case is a perfect example. I had a positive test for Celiac Disease and still was not “officially” diagnosed. Rather, my medical chart tells the medical community that I have heart burn and irritable bowel syndrome, fatigue and generic abdominal pain, bloating and unexplained weight gain, and, oh yeah, chronic middle ear infections from the time I began eating foods.
It isn’t entirely fair to pin all of this on the medical community. Some people with Celiac Disease experience no symptoms. At least, that’s what some of the medical literature tells us. I actually don’t believe that to be the case. I think many people experience at least a few of the more than 250 Celiac Disease symptoms. Of those symptoms, I can point to several that were prevalent in my medical file over the course of 14 years:
* Easily Bruised
* Joint Pain
* Worsening PMS
* Trouble Losing Weight (Thyroiditis)
* Mood Swings
* Trouble Focusing
* Sugar Cravings
Even with all of these symptoms, none of the medical professions who were trained to help me align the forces within my body to heal ever put the pieces of my medical puzzle together. My doctors were so busy treating each symptom as a stand alone issue that no one ever looked at me as a whole person, as one entity.
No one, that is until my new Naturopath in 2009.
Tears came to my eyes. In all of this noise about failed doctors and missed test results and 38 years of discomfort, all I could hear was silence and all I could feel was relief. Finally, I felt validated. I felt lifted and grounded all in the same moment. My breathing deepened and suddenly became more cleansing then it had ever felt.
Granted, nothing physically had changed. I was just as tired as I had been 15 minutes earlier when I walked into that office, but energized all the same. Through the tears and the joy, I heard my doctor talking to me.
“It all makes perfect sense. Listen, for a happy person, you get sick a lot. And, your symptoms, while they may seem strange, are actually all related.”
Oh, dear God, here come the tears again.
She continued, “Left untreated, gluten sensitivity can lead to all sorts of other symptoms and everything you’ve experienced can be explained. For instance, Thyroiditis, or dysfunction in the thyroid, can be caused by Celiac Disease. Your headaches can be explained by Hypoglycemia. Your fatigue is probably due to low iron or low Vitamin D levels (or both), but we’ll do a blood test to confirm that. You see, your immune system is so busy immersed in this war that is doesn’t have time to take in the nutrients it needs.”
“So, you mean, despite the calories I’m consuming, I’m basically starving myself?”
“Sort of, yes.”
Now, on January 8, 2009 (the official date of my ‘rebirth’), I sat in the doctor’s office staring again at the medical file that had indeed held all of the answers if only someone had taken the 15 minutes she just had to fit the pieces together into one whole person.
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