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Diabetes and Celiac: how my high hopes led to diet "nopes"

2014-06-02 11:29
Tina Piaquadio

Tina Piaquadio, who has Type 1 Diabetes, shares what happened when she learned about her Celiac Disease and how she improved her Celiac skills.

I was very hopeful as I entered my new doctor’s office and sat across from her at her desk. She had just completed a full exam on me, looked over my lab results, and was ready for discussion. It took several months to get an appointment with this highly recommended diabetes specialist, but I patiently waited because her reputation preceded her. I’m a type 1 diabetic, and my blood sugar levels had been dangerously high and low lately without reason, which was making my day to day life very difficult. Even more of a struggle was the fact that I had been severely fatigued, wasting away my days off lying on the couch and draining myself of every last bit of energy just to get through the work day. Add the emotional strain that goes along with all of this, and you can imagine I was desperate for help.

I was convinced that it was my age. I had been a diabetic since my teens and now I was approaching 40. Time had taken its toll, I thought. This is what happens to a diabetic body as it gets older. The future was glum. This doctor was my last hope. Could she figure out why my sugar levels were out of control? Could she guide me in the prevention of becoming disabled by this awful disease as my years progressed? I expected her to make drastic changes to my insulin pump settings and my medication regimen. Surprisingly, she wasn’t interested in doing this just yet.

“Haven’t you been screened for Celiac disease?” she asked.
“No…what’s Celiac disease?” I replied.

The Doctor Schooled This Know-it-all About Autoimmune Disease

She then proceeded to tell me that recent studies showed that one in every nine type 1 diabetics has Celiac. Like type 1 diabetes, Celiac is an autoimmune disease, and science was telling us that the two often went hand in hand. With type 1 diabetes, the immune system attacks and destroys the pancreas, rendering the body incapable of producing its own insulin. Celiac causes the immune to system attack the intestines when it senses the presence of gluten, damaging the lining where the nutrition is meant to be absorbed. This can cause a long list of possible symptoms from abdominal pain to malnutrition.

“Well, you can test me but I’ve never had digestion problems. I’ve always been able to eat bread, pasta, and crackers, and I have no food allergies.” I was confident she was way off course with this idea.

So, as directed, I ate as much gluten-yielding foods as possible and began the testing process. The first step was a blood test to see if the celiac gene was present. The doctor called and told me the test came back positive, but this did not mean I had the disease. This initial test is used to rule out the possibility in the earliest stages of diagnosis; if the gene is not there, celiac is a definite negative. If the gene is present, we move forward with another blood test to see if there are antibodies in the body indicating the likelihood of an autoimmune reaction. They brought me into the office for the results of this one – another positive. Next, an upper endoscopy would have to be performed to analyze the inflammation in the intestines and biopsy some of the tissue.

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I Started Doing My Homework About Celiac

I was gradually coming to accept the idea that I may have a life-changing disease that can only be treated with a strictly gluten-free lifestyle. In the process of increasing my gluten intake, my symptoms had gotten worse. I was so depleted of energy that I couldn’t keep my eyes open at times. My hair was getting thinner and lifeless, and my diabetes control was off the charts. Why was a biopsy necessary? I had been reading up on celiac – and learning some scary information. There is a much higher likelihood of cancer in the digestive system for people with celiac inflammation. So, my diabetes specialist referred me to a gastroenterologist for further testing – this would be the final yes or no to a celiac diagnosis. This doctor performed the endoscopy and informed me that I did in fact have celiac disease and I was to completely eliminate gluten from my diet immediately. The damage inside my intestines was significant to the extent that much of my food was passing right through me without the absorption of key nutrients. My iron level was extremely low, which explained the fatigue. This also made sense of the unpredictable blood sugar levels. It’s nearly impossible to dose insulin properly when you’re not aware of how much food the body is actually receiving. But, thank God, the biopsy came back negative. No cancer in the tissue.

Gluten-Free Was Not What I Expected It To Be

Finally, I knew what I had been doing wrong all these years! I was ready to eliminate gluten along with a slew of negative symptoms. I expected to regain my energy, lose weight, and feel like my old self again. Well, it was not to be. Going gluten-free is a slow learning experience, and I soon realized that all those gluten-free goodies I was so happy about were actually very fattening! And this “treatment” I was doing by eliminating gluten was no overnight fix. It was several months before I felt any better. This is because all that inflammation in the intestines needed time to heal before I would begin to properly absorb my foods. For a diabetic, healing is a slow process, and I could expect about a year before being fully recovered. But, when I did begin to feel better I experienced many revelations about my body. There was a bloated feeling I had carried around in my belly constantly – not painful, just annoying – I always assumed it was nothing abnormal. A few months into the gluten-free diet, it was going away. My hair was coming back. My bouts of insomnia stopped coming and going, and I was sleeping more soundly. My energy levels were returning to normal. I gradually cut back on the gluten-free treats, and lost a little weight too.

I Finally Got The Hang of It

Gluten-free is not just food that says “Gluten Free” on the label. It’s everything in the world that doesn’t contain wheat, rye, barley, or triticale. This means fruits, veggies, rice, potatoes, dairy, eggs, meats, fish, corn, beans, and a long list of foods I had never tried. I just needed to learn how to properly and safely prepare these foods without adding gluten. For about two years I worked on perfecting my celiac skills. I came to realize it was something I could do. Every day without gluten was another day toward a healed gut. I didn’t want one grain of wheat to pass my lips and reverse all the progress I’d made in healing. Then I began eliminating meats, fish, dairy, and eggs. Next thing I knew I’d become a vegan too, and my cholesterol levels were the best they’ve ever been.

This July will mark three years of being gluten-free for me. My blood sugars have gotten better, and my lab tests show my nutrient levels are all normal. I also just rounded a full year of living on a plant-based diet, and I’ve never felt this good in my life. Never did I think I’d be following these food restrictions. The sacrifice is well-worth the reward. Gluten-free and plant strong.

Written by Tina Piaquadio (in picture).

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Comments

Congratulations on your recovery. I'm glad that you're feeling great! I also think it's generally beneficial for people with Type 1 to consider going gluten free for the reasons of lessening high carbohydrate intake. There really is a lot of benefits to cutting gluten out of your diet for a diabetic.