Celiac PSA: get checked today, my story, and what to look out for.

Unfortunately, having an autoimmune disease predisposes us to other autoimmune diseases. Celiac can now be identified via a simple blood test during your regular A1c testing. I highly recommend everyone ask their endocrinologist for a celiac blood panel at their next visit. It’s a very simple test with results arriving within one to two weeks. If the results are inconclusive you can follow up with the usual endoscopy.

I just want to share my story and symptoms in the hopes I can save people a lot of time, pain, and money.

I am now a 35M, diabetic nearly 30 years. In hindsight my symptoms began shortly after the 2020 COVID lockdown. I got COVID extremely badly in March 2020 and didn’t recover from it for months. Before COVID I was training to compete in a triathlon, but since COVID I’ve never felt as healthy or strong. Soon after lockdown I started an extremely demanding, stressful, and dangerous job with odd, extremely long shifts, and weekly travel across the US. Whenever I felt rough on this job I would power through with Redbull, THC, Liquid IV, and whatever OTC pain meds we had in the first aid kit. I thought it was the exhaustion, stress, and heat.

After three years I switched from that to a desk job and it felt like my health rapidly declined. I would get random spells of flu-like fully body ache symptoms that would take me down for a day or two. I developed frozen shoulder and the pain was excruciating not to mention physically debilitating. I would get awful muscle knots across my shoulder blades and black that would literally begin to hunch me over. Since COVID I gained ten pounds a year that didn’t seem to match my diet or exercise level. My blood sugars were pure chaos. It seemed completely random: I would eat the same foods at the same time with the same pump settings and get completely different results. Particularly I ran high but went I crashed I would have to eat an entire cabinet of sugar to recover.

At times I wondered if it was because of gluten, maybe a sensitivity or intolerance, I have friends with celiac. But all their symptoms were intestinal and not once over the past six years did I ever have intestinal problems eating gluten. I would try cutting it out, bringing it back in, but I was never able to tie gluten directly to my symptoms.

Around December of last year I started experiencing trigger finger (where your finger locks in place then snaps open) in the mornings when I woke up. Like my other muscle aches I thought this was likely the result of my rough work live mixed with three decades of diabetes. In January I had an extreme bad fall on ice and concrete steps, afterwords my hands were so swollen, and hurt to the touch I suspected I broken them when I tried to catch my fall. I had X-rays in both hands and nothing was broken. By this point both my hands would seize up constantly if they weren’t actively being used and I would have to massage them by pressing them against the top of my thigh and rolling them out u til they were mobile again.

Around this time I also would be so exhausted it was almost narcoleptic. I would get home from work, where I sat all day, sit down on the couch and pass out immediately. It got to the point I would have to pull over in parking lots to take naps or literally hide in a closet at work. I had horrible snoring and sleep apnea and would literally wake up gasping for air. My throat always felt too small and I would choke on pills or any food that wasn’t cut into tiny pieces.

I had my ANA checked and my results were cytoplasmic and speckled. My sedimentation rate (inflammation) was extremely high. I tested negative for Lyme’s, Lupus, Sjodgrens, and everything else they could think of. In the meantime in addition to my hands the joints in my wrist, elbows, shoulders, hips, and knees began locking up. I started having trouble breathing and everywhere I went I was out of breath after talking for a bit or walking up some stairs. Eventually I had to pull out of work.

After several months and thousands of dollars in tests and doctor visits I was diagnosed with “inflammatory arthritis” which means they have no idea what’s causing it and I was prescribed a long-term medium dose of prednisone to relieve the inflammation and a low-dose of methotrexate (chemo) as a long term (rest of my life) treatment.

The two drugs made me sicker than I was before. After a few days of inflammation reducing my blood pressure and heart rate shot up. I went from having perfectly normal vitals to stage two hypertension and a resting heart rate over 100 bpm. Within one month I gained twenty-five pounds and developed extremely painful stretch marks all over my body. All this time I was still eating gluten and since when I’m sick and stressed I’m more inclined to eat convenience foods full of gluten, I was eating much more gluten than before. But I was able to return to work.

One day, I was talking to a colleague I haven’t seen in a year and recounting everything that I had been and was going through. He revealed to me he had the exact same experience years earlier: the exact same symptoms and the exact same treatment. His wife insisted he try an elimination diet and through that and later an endoscopy he was able to confirm a celiac diagnosis. Once he cut celiac out all his symptoms eventually alleviated. By chance I happened to be seeing my endocrinologist the next day so I asked her to test me for celiac.

She was able to add a celiac panel to my usual labs that same day. After two weeks the results came back unequivocally I had celiac. I immediately cut out all gluten, after about a week I began feeling better. After two weeks, except for the side effects of the medications, I felt ten years younger. I felt the way I did before COVID. Unfortunately I had a bad reaction to trying to ween off the medications too fast and had to stretch it out for a few months.

Once I was fully off the medications and when I don’t eat gluten I feel better than I’ve felt in the last ten years. My blood sugar is almost perfect, my limbs are limber, my apnea gone, my energy restored, I even swear I’ve gained an inch or two in height. But if I accidentally get gluten I know within minutes because many of those symptoms come right back at a lesser extent.

I know finding out you have another autoimmune condition is scary and I know going gluten free is hard. It’s a struggle every day and I’m still figuring it out. But I never want anyone to go through what I went through. If some of this sounds like what you, or a friend, or a loved one is going through, please get checked as soon as you can.