Posted in Celiac "Fun" Facts

Oh Sugar, Sugar…

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So Celiac Awareness Month is now 2/3 finished and I have yet to do much in the way of awareness. If only there could just be a few more hours in the day. Regardless, there is an important reality of celiac I’ve been meaning to address for awhile now…so I suppose today is as good a day as any. Celiac disease is an autoimmune disorder. Yes, you probably already knew that. However, what you may not know is that if you have an autoimmune condition and it remains untreated, they often act like dominos…and before you know it you have plenty of them. I mean it makes sense when you think about it: if my immune system is going haywire, why would it just isolate itself to one body system?? Clearly my body learned the “sharing is caring” lesson a little too well when I was a kid.

So rewind 3 years: it’s spring of 2011. I was in the heart of my “we don’t know what’s wrong with you” dark days. I had been to every doctor under the sun, or so it seemed. I had a primary care doctor, a cardiologist, an endocrinologist, a neurologist, and a nutritionist; and yet between them all, no one could figure out what was going on. It was like a fast-paced game of “Hot Potato”…and I was the spud. A sickly, limp one at that. Finally, it was discovered that my frequent dizziness and pale, clammy skin was related to when I was eating and what seemed like an impossible amount of bloodwork finally provided a clue: insulin. My body was making WAY too much. 3 times too much to be exact. So any time I ate sugar, even natural sugar like an apple, my blood sugar was crashing, not necessarily too low but just too quickly for my poor body to catch up. Each doctor posed a different theory about what might be responsible for this (though honestly, they just seemed way too excited for my liking about finding something amiss). Next thing I knew, I was heading in for ultrasounds and the word “insulinoma” was bouncing around.

Now, I know many current/future doctors; my one plea to you: please, please, please don’t just toss around words like that to your patients because their symptoms fit the bill. I know, you’ve spent way too many hours in a lab or buried in a book reading about conditions such as these, and you’re beyond excited to see it in real life…but then there are poor, frightened girls like me who end up huddled under a blanket on their apartment building rooftop googling “insulinoma” and looking out over the Baltimore skyline through tear-filled eyes. (And for those of you thinking the worst, my apartment had a rooftop deck…I was safely seated in my bucket chair, I just loved going up there at night to find peace and wait for Natty Boh to wink at me a few dozen times before bed.)

Photo Courtesy of
Fortunately, as you can probably guess, an insulin-producing tumor was not the cause of my maladies. However, the endoscopy to rule out this culprit was the reason they inadvertently found my intestinal lesions (typical of celiac disease) so really it was a blessing in disguise. So what was it then? Am I telling you that celiac also means avoiding sugar?? No, of course not. My untreated autoimmune condition had triggered another. My immune system was attacking my own insulin; hence my body kept thinking it had to make more…and before my poor cells knew what hit them, it was hyperinsulinemic hypoglycemia. AKA, I was passing out/scavenging for the nearest quick-sugar-fix. Bad news. The good news was that once they realized it was all autoimmune-related, I was told the insulin issues would fix themselves once I stopped ingesting gluten and my immune system had calmed down. Fortunately that proved true…but not before I was the reluctant recipient of a blood sugar monitor, a valuable lesson from the Allergy Angel who taught next door (who also happens to be a Glucometer Guru), and several subsequent months of 5-times-a-day-finger-prick testing. Diabetics of the world, my utmost respect to you. I admire you more than you know.

In time, my blood sugar levels stabilized and life got back to a new normal. However, as you’ve probably realized by now, gluten was not the last of my triggers. So with each new food issue came a resurgence of my blood sugar problems (not as severe as that first time, thank goodness) and each time they resolved themselves when the trigger was eliminated. That is, until recently. Last fall I returned for my annual 3-hour Glucose Tolerance Test (yes that one with the orange sugary drink that every pregnant woman I know dreads/complains about for weeks afterward). I get to have one every single year. And each year for the past 3 years, my levels would gradually get higher…and I think the great casein, soy, corn debacle of 2013 proved to be too much for my poor cells. So now, aside from avoiding gluten, dairy, soy, and corn, I also have to try to eat foods with a low glycemic index. (I know…just when you think it can’t get crazier, right??) And because of my most recent bloodwork, I now get to add a daily insulin-sensitizing medication to my bedtime routine. I’m just grateful I don’t have to do the finger pricking much anymore.  That and the childhood summer I spent countless hours downing M&M minis with water in my determined attempt to learn how to swallow pills (a skill I don’t think I mastered until around the time I learned to drive).

My low-glycemic-index team 🙂

So why am I telling you this story?? To say sugar is the enemy?? Of course not. It’s because this is Celiac Awareness Month and whether we want to admit it, Celiac is not a harmless condition. It’s quite harmful. And that doesn’t even begin to address the subsequent issues which can come your way if you choose to ignore it. (Though I simply cannot wrap my head around how someone could manage that.) If you know something is wrong with you and your army of doctors keeps passing you off to a comrade insisting nothing is wrong (at least within their specialty), don’t give up and don’t surrender. It may take much longer than you, or anyone, would like…but getting to the root of your symptoms is imperative. And just because insulin was my issue doesn’t mean it’s the same for everyone else. For many it’s thyroid or some other endocrine-related gland.

So Celiac Awareness Lesson of the Week: it is so much more than a stomachache. For some reason, people assume gluten consumption = stomach pain, maybe throwing up, and that’s it. Nope, in fact part of me wishes that were the case. The effects are lingering and can be devastating. So keep supporting the Celiac friends in your life in their quest to stay healthy. And if that Celiac friend is you? Well, stay strong in the battle my friend. It may be frustrating, frightening, and exhausting at times; but take it from the 2011 version of me fighting back tears on a Baltimore rooftop: healthy is a much happier place to be, no matter how long it takes to get there 🙂

Mr. Boh and I…much happier than in 2011 🙂

One thought on “Oh Sugar, Sugar…

  1. I *still* have to psych myself into swallowing pills! If I get distracted, I still occasionally choke or get them stuck in my throat. I can manage DayQuil liquicaps, though, and those are like horse pills, so I guess I've come a long way.


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