A rebel with a cause...
My diabetes story
The early days
As I said I know diabetes well. In fact, I know all of them - first hand. "But how?" you may ask. "That's impossible!" Well, this is how it happened ...
The first half of my life was uneventful in terms of health. I was born in the Ukraine, grew up in Cyprus, studied law in the UK and Germany, worked in multinational law firms and eventually adopted Belgium as my preferred place to live and work.
My first encounter with my blood sugar was in 2007 when I was pregnant with my first son. I went for the routine 2hr glucose tolerance test and - I failed it. I was dumbstruck - I was 27 yrs old and my weight was normal. I did not understand. Nonetheless, I did as I was told, poked my finger several times a day, watched what I ate and all went well. Same thing 2 years later with baby no.2. However, by the time baby no.3 came along 2 years after that, something had changed. I knew about diabetes by then. I was doing all the things - yet my blood sugar would spike out of control even from just aubergines. By the time I finally got an appointment to see a specialist at 5 months pregnant, things were no longer 'manageable' and this is when I had my first encounter with insulin. It was another shock, "but ok", I thought - "its temporary". Insulin did its thing and all went well with baby no. 3.
"Type 2"
I did as a I was told and tried to learn what I could about type 2 diabetes and do things well. In the meantime, all sorts of weird and not-so-wonderful things kept happening, mostly involving my gut. I did the rounds of several specialists without finding any answers. "Its time for those meds", I thought, 2 years after the type 2 diagnosis, "surely that would be the answer to all my problems". Except ... it wasn't.
The breakthrough
A huge breakthrough in diabetes care came in the form of continuous glucose monitors (CGMs). Instead of snapshots of data obtained from finger pricks, one could now get the full view, 24/7. If you don't know what I am talking about, imagine sitting in a dark room all your life, only seeing things around you when someone flashes the light for 1 second at a time. Then one day someone turns the light on. In the life of a person with diabetes, CGMs made the difference between night and day.
The only problem was that in Belgium, where I live, common mortals could not get hold of one. They were kept under lock and key in the hospitals and given out only to those that were using insulin.
I had to get my hands on one. Luckily, I have a very open-minded doctor, who succumbed to my pestering and agreed to let me buy a couple patches from the hospital. I proceeded to self experiment. I saw what I could and could not eat (my healthy bowl of oatmeal and sushi fell in the latter category!). A few months later I put another patch on - this time I could see that things were not great. Foods I could manage before, I no longer could. Even innocent low carb foods would send my blood sugar way above normal range. It made no sense to me - I was doing All The Things. What was happening to my body?
Type 1 - LADA
As one often does in such times of desperation - I turned to Dr. Google. I scouted all the literature I could find on type 2 diabetes and it was in the latest treatment guidelines for type 2 diabetes that I first saw a reference to what was called "LADA" (Latent Autoimmune Diabetes in Adults). It was just one sentence that said, something to the effect of - if the patient has LADA, then the normal treatments for type 2 diabetes may not be appropriate and insulin may be needed. After that it did not take long for google to tell me that LADA is Type 1 diabetes (- just that in adults, unlike kids, the autoimmune attack can take many years to destroy the insulin making cells). That in order to diagnose it, one had to test for certain antibodies in the blood and that after a certain point insulin was unavoidable. With that information, I went to my generalist who kindly agreed to get them tested. Lo and behold, a month later, my fridge contained enough insulin to kill a small village.
Joining "the club"
Eleven years after my initial diagnosis of gestational diabetes, I was now officially a member of the "Type 1 club". I will not lie to you, despite a certain relief of finally having figured out what was going on, the news hit hard. I went through all the five stages of grief. Even though I had been acquainted with diabetes for a while, this was a whole new world to me.
The nurse gave me the refresher course on insulin and, in a kind hearted attempt to prepare me for things to come, showed me the blood sugar graphs of other T1D patients saying: "See, Madame, this is normal". What was "normal" in the T1D world looked like a rollercoaster ride. I was not a fan of rollercoasters in any shape of form - these were not going to be an exception. It was at that moment, in the nurse's office that I promised myself that I would find a way around this. "There had to be a better way", I thought.
In the months that followed, I read all I could get my hands on regarding T1D. Life was a daily science experiment. Hours were spent on LADA Facebook groups. The learning curve was steep. I realised how lucky I was to live at a time when science and technology have provided us with many amazing tools to keeps us alive and manage T1D. However, one thing because clear as day to me very quickly. The most powerful tool for managing this condition was not invented in a lab. It grew out of the earth and lived on it.
Nutrition is, hands down, our most powerful and effective tool for keeping T1D in check.
"Lemonade"
They say "When life gives you lemons, make lemonade". In my case, the "lemons" of T1D turned into "lemonade" in the form of a deep dive on all things nutrition and eventually three years of studying at CERDEN (the reference school for nutrition studies in Belgium) to become a certified nutrition counsellor. What I have learned has enabled me to keep that promise I made to myself in the nurse's office five years ago. Of course, not everyday is ideal. For the most part, however, I stay away from rollercoasters and keep my blood sugar within the non-diabetic range. I understand from my doctor that this is unusual to see in a T1D. I don't think it should be. My goal is to enable more people to do that. I really believe that with the tools we have today, given the right knowledge and support this can become the norm rather than the exception in the "T1D club". If you think I could be of use to you or someone you know, get in touch. I would love to help you out.
The takeaway
Be proactive - If you (or someone you know) have been given the diagnosis of type 2 diabetes or pre-diabetes, consider asking your doctor to test for antibodies for T1D, especially if you do not fit the typical profile of type 2 diabetes. Around 1 in 10 people who are diagnosed with T2 diabetes are actually T1 (LADA). That's a lot of people walking around with the wrong diagnosis. A lot of these people will not know until the pancreas fails and they end up in the emergency room with a serious condition called DKA (Diabetic Keto Acidosis) - where the blood turns acidic and organs begin to fail. It is important to catch this early!