Gluten Free with Type 1 Diabetes. My Diagnosis Story

From my Wordpress Blog:

If you had talked to me a year ago about my health, I would have boasted, with a mixture of arrogance and embarrassment, that I hadn’t seen a doctor in years. Being the daughter of a nurse and a pharmacist allowed me access to a plethora of medical knowledge, advice and counseling (much of which I ignored). I ate right, exercised regularly, and took care of myself. I did everything I was “supposed” to in order to live a healthy life. Then 2014 hit.

For weeks I suddenly became excessively thirsty! As a hot yoga teacher and practitioner, I just assumed I was a bit dehydrated. I guzzled, and guzzled until I felt like a water balloon. An unsatisfied water balloon. No matter how much I drank, my thirst was never ever quenched. I drank water, seltzer, juice ANYTHING to cure my need for liquids. This urge to hydrate was so intense, I recall driving a mile down the road to run some errands and having to stop half way through my drive because I just could not wait any longer for some water. I pit stopped at the nearest gas station ASAP. Upon returning to my car I swore I would carry a water bottle with me from then on. I also promised myself I’d see a doctor that week.

Good thing I did. My seemingly insignificant symptoms, turned out to be a really big deal. I got checked out at a local urgent care and within minutes they scooted me out the door and pointed me in the direction of the nearest emergency room. My blood sugar levels were insanely high– almost 400! That’s a number that would make me very popular with mosquitos and vampires– talk about sweet blood! Now, most people don’t know much about blood sugar levels, but the average person’s levels are between about 85-120. Something was not right. That something was my poor pancreas. I checked into the ER completely conscious, pain-free, and seemingly “normal” which was bizarre. In my mind Emergency Room trips should involve blood, pain, tears and drama. I felt pretty fine, was relatively calm, and saw no blood except the samples they collected from my veins. After taking my blood, they too saw my sugary sweet blood sugar levels, and I was matter-of-factly diagnosed with Type 1 Diabetes. Their nonchalance made this seem like a nonevent. The only thing that shocked many nurses was the fact that I was “so young” and “healthy-looking”. I didn’t really know much about diabetes or what this would mean for my life. When my parents called I urged them not to come– I was fine no big deal…. Later I realized it was in fact a HUGE deal. Good thing they did come the next day.

I spent my New Years Eve at the hospital, watching the ball drop on the tiny television screen. During my stay at the hospital, my right arm became adorned with tubes, needles and monitors. I received insulin as well as IV fluids through the day and night. The severity of my diabetic problem in combination with the stress began to set in. Finally I was told what exactly was going on with my body. Well, maybe not exactly. The causes of Type 1 Diabetes, unless genetic, are not completely understood just yet. I was told my body had a predisposition to diabetes, although no one in my family lineage has ever been diagnosed with Type 1. I must have gotten in contact with a virus that triggered something in my DNA to shut down my auto immune functioning in the pancreas. Basically, the beta cells that help with insulin production had stopped multiplying, so my body was now making very little to no insulin. I found out that I would need to inject myself with insulin daily. Thank goodness I’m not afraid of needles! When we eat, much of our food is converted by the body into glucose. In order to ensure that glucose is absorbed into the cells, insulin is needed. If there is no insulin or not enough insulin, our cells do not get the energy they need to function properly. In addition, the sugar then stays in our blood stream, hence the intense thirst I experienced. My body was trying to use fluids to flush out the extra sugar in my blood. Too much glucose in the blood can cause serious problems over time such as reduced organ function and poor eye sight among many other complications.

Once I learned that I would need to stick myself with needless and prick my fingers 2-4 times per day, I wasn’t happy of course, but I was relieved to know I could actively do something to manage my health. However, I quickly realized that insulin wasn’t the superhero that had arrived to save the day. While using insulin could lower my crazy blood sugar levels, it could also be the villain itself. Improperly dosing insulin would become a whole other aspect to keep in mind. Too much insulin can cause blood sugar levels to quickly drop too low (usually below 70). This results in hypoglycemia, dizziness, irritability, inability to think properly, cold sweats and more. My life had now become a really tricky, really risky and unpredictable balancing act.

The following weeks were challenging. I was afraid to eat anything new, so I stuck to a strict diet of veggies, eggs, nuts, and meats. High protein, low carb and low sugars. I began to gain back the weight I had rapidly dropped before being diagnosed. I ate very healthy foods, but eating the same thing day in and day out gets BORING! I had also finally begun to adjust to administering insulin. I figured out that certain foods had a certain impact and really thought it was under control. Then, a few weeks later everything changed. A couple weeks after that everything changed AGAIN…and again…and again… I soon realized there was no specific way of predicting how foods and insulin would impact my body. Each day was different, and even if I ate the same foods and took the same insulin amounts, other factors would vary that were out of my control like stress, exercise, hormones, hydration… at times it felt like even the weather could throw me out of whack! So I adjusted and adapted, taking on each day as a new challenge. This forced me to be extremely in tune with my body, my mood and what I put into my body. At first I was of course mad and frustrated that this had happened to me. But then I began to take a more positive approach. To this day my mantra is, “I feed my body with food for nourishment, just as I now feed my body with insulin to absorb that nourishment.” Our bodies are not self-sustaining without food, and just as our bodies don’t make nutrients, my body now does not make insulin to carry the nutrition into the body. Insulin is just an extra step and another way I have to provide nourishment to my body– although, yummy food in my belly is definitely more tasty and pain free than a syringe to the belly!

My last A1C test (the test diabetics receive to check blood sugar levels over 3 month intervals) was completely normal. I have found a groove and have been able to stabilize my sugar levels with low amounts of insulin and a healthy diet and lifestyle. While this is the case, I hadn’t been feeling 100% still. I was experiencing what I call “brain fogs” in addition to a lack of focus and energy. I went into my Endocrinologists’ office. Everything seemed fine, so the diabetes was likely not causing my symptoms. We were finally able to determine that I not only have diabetes, but I also have a gluten intolerance. These two combinations of Type 1 Diabetes and Celiac Disease often go hand in hand. So I now had even MORE diet restrictions, but I was happy to have found a solution. Cutting out grains and other processed foods containing gluten made a tremendous difference. So, I am now a gluten free diabetic at a time when cutting out sugars and carbs is a fad and my food choices make me seem like I’m constantly dieting. I get judgmental glances when I pass on dessert, or ask for a burger without the bun. “You’re so THIN, indulge a little!” These little stabs hurt, although the intentions are not bad. If I could splurge on the ice cream sundae with extra chocolate chips and fudge, trust me I would– but the health risks are just not worth it now.

Luckily, this healthy diet lifestyle is good for my body. My medical condition forces me to be aware of what I consume and how much. While it is frustrating at times, I am also held more accountable to nurturing my body than most people, and I don’t take my body for granted– it is an amazing thing!

I hope that my journey resonates with you, whether you are newly diagnosed, a veteran diabetic, a caregiver, or a friend. I also hope that my story can spread awareness and understanding about Type 1 Diabetes. I did not bring this on myself through poor diet or lack of exercise. I am just like most 24 year old women, living a normal, healthy life, but I conversely was dealt the wrong hand. Each day is a new experience, and I am so fortunate to have an amazing support system full of loving friends and family.

1 Like

So glad that you wrote this blog. I do not have Celiac disease, but have been put through the ringer with many other diagnosis’ , which = tons of meds on top of my insulin pump and cgm.
Best of luck to you. And you are so correct; diabetes is never stable no matter what you do. I’m on here today to research again and get motivation to stay on track. I have been a diabetes for over 8 years and I still struggle with every part of it. Some days really suck, and then the next day comes and you start fresh all over again… Hopefully starting with a great BG!

Wow! What a story!! Sorry you had to go through this. I hope things turn around for you and you don't suffer the effects of being a young diabetic.