Increasingly difficult to manage blood sugars... due to underlying celiac disease!

I don’t usually post on forums (in fact, this is my first post here!), but wanted to share my story in hopes that it might help others with T1D. I’ve been diabetic for ~22 years (diagnosed when I was 6 years old) and generally have had good control (A1C’s between 6 and 7.5, even in the “dark ages” of diabetes two decades ago). Amazingly, I don’t have any complications!

However, the last few years, my blood sugars became increasingly difficult to regulate. It happened gradually, so I didn’t notice at first, and I had recently gotten a CGM, which did initially help my blood sugar control. I remember about two years ago my endocrinologist asking what weird blood sugar patterns on my CGM were (for example, super high readings right after a meal, but then a huge plummet an hour later, even with a healthy meal like chicken and a side of quinoa, etc.; or random blood sugar spikes to 300 or 400 in the middle of the night). For the first time, I had no explanation (until then, I felt like diabetes management was down to a pretty fine science, for the most part…).

Maybe about a year after this, I started having more extreme lows. After eating a meal, a few hours later my blood sugar would be low and I would have to drink juice or eat some sugary snack to keep going. Even in the middle of the night, I often would drink at least three cups of juice. I dramatically changed the settings on my pump, but it seemed impossible to get them to the right level (either my blood sugar was constantly high, or else constantly low, and what worked for one day never worked for the next). I questioned everything- I got a new pump, I started eating extremely low glycemic index foods and more protein to minimize the constant blood sugar rises and falls after eating (it didn’t work, btw), and I even started wondering if I should get tested for things like a glycogen storage disorder (since I could not keep my blood sugar up). My endocrinologist was baffled by how often I now was eating throughout the day. In a typical day, I often would eat a normal lunch and dinner (for example, a few slices of pizza for one meal and chicken tacos for the other with sides of rice and beans), but also drink ~5-10 cups of juice or juice boxes when low, eat a few packs of cookies from the vending machine, eat at least one candy bar, plus some other snack items (this sounds bad, but it wasn’t any better if I ate healthier snacks; btw, my BMI is about 20). My A1C wasn’t affected much since I was low as often as I was high, but I knew in the past that I could have a fairly stable blood sugar for hours, which hadn’t happened in years anymore.

Unfortunately, this went on another year or so until I started having freaky eye issues (transient double vision and seeing white in my peripheral vision) and sensations of twitching on my face. Eventually, I went to see a neuro-opthamologist who was convinced I had multiple sclerosis, but my brain MRIs came back fine. During these times, I also started to have unusual but relatively mild gastrointestinal issues (TMI, but floating and light-colored stool if you really want to know…), so I started to wonder if I could have celiac’s disease. I had come up borderline positive for antibodies (unfortunately, I don’t know which ones) as a teenager, but didn’t have any symptoms, so the results were dismissed. But now I came up tremendously positive. I never did get a endoscopy (bad idea, I know, but I had terrible insurance), but a month or two after starting a gluten-free diet, my blood sugars have been amazing. I did have to increase the amount of insulin I took for meals by about 50% (I guess because I was absorbing more carbs; interestingly, my insulin dosing went back up to what it was several years ago before I lowered it), but I can go without eating for several hours (or the whole night) and not have to eat every hour or two like I used to. I honestly feel like I’m a new person with T1D, but the sad thing is that I used to be like this.

So, I guess I should emphasize that most people’s erratic blood sugars are not due to celiac’s disease, but I think it’s a possibility you should considered if your control has worsened. When I was looking specifically for information on how blood sugars are affected by celiac’s disease online, I couldn’t find too much, so I wasn’t sure if celiac’s disease could cause such severe lows. But since absorption of blood sugar stabilizing fats and proteins is inhibited in celiac’s disease, it seems reasonable. (I also had extremely low levels of fat soluble vitamins up until recently, so this makes sense, at least in my case). Also, it surprised me that GI symptoms only appeared years after other issues like blood sugar instability and low fat-soluble vitamin levels. Anyways, hope this might help someone!!! And, if so, eating gluten free isn’t nearly as bad as you think it will be! :slight_smile:


Thanks for sharing your story Jennifer. I have been wondering if I could have celiac- I was tested for it a long time ago- negative and again 2 years ago but I had eliminated gluten for 3-4 months prior to that test. Gluten free has helped my bg control but it’s still very hard. I also have low vitamin D now with hyperparathyroidism and hashimotos so that could be involved too. I hope they get the new celiac test in the US soon where you don’t have to eat gluten in order for it to be accurate. I still can’t eat a lot of the gluten free foods though because they spike me too much/too quickly.

I’ve had Celiac and Type 1 Diabetes for 22+ years; they came to me at the same time. I don’t believe the Celiac actually affects my blood glucose. My Lactose Intolerance has increased from a little bit of intolerance to total intolerance recently. Dealing with eating gluten-free and lactose-free is difficult but possible. My blood glucose depends on the carbs I do eat. I aim for low carb, but actually achieve moderately-low carb since I eat fruits and vegetables. My thought is that I’m not going to deprive myself of healthy foods that don’t affect my digestion, and bolus appropriately.

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