The below is a post I asked my friend, Alexa, to write regarding her journey to discovering she had Celiac Disease. You may remember, Alexa from her previous post back in December called “I am a marathoner!” Alexa will go into details about it but what I found most amazing about Alexa’s journey is that she truly listened to her body. She knew something was wrong and pushed her doctors to do tests. And then, Alexa didn’t let her recent healthiness experiences be a limitation for what she can accomplish. Here is Alexa’s journey:
It all started earlier this year, I’d put about 10 pounds depending on the day. At first I thought they were Christmas pounds, or from when I was recovering from a stress fracture around Thanksgiving and not being as active. However, as I upped my activity level, and ate even healthier than normal, they just weren’t going away, in fact, I even gained a bit more weight. The weirdest thing was, all the weight was in my abdomen, and I usually gain weight in my face first. My clothes were not fitting well, and I felt like my mid-section always felt bloated.
It came to a head when I hopped on the scale on particular Friday morning to see how my week’s worth of strict eating and working out had paid off, to see I’d gained three pounds. WHAT?!? In total I had gained 12- 15 pounds since our wedding last June, depending on the day. This was NOT normal for me. I am usually pretty consistent with my weight.
Being that there is a history of Thyroid problems in my family, which can be a cause of unexplained weight gain or loss, I wanted to have mine tested. During my Google search on unexplained weight gain, I also came across something else, Celiac Disease. According to Mayo Clinic, Celiac is the allergy to Gluten, and causes your intestine to basically be worn down, and not be able to absorb nutrients. Gluten is found mainly in wheat, oats barley and rye.
I knew a little about the condition, because my friend Amy’s daughter was diagnosed at a young age, and Amy runs the Savvy Celiac blog to raise awareness about the disease. I contacted Amy and asked her if my symptoms warranted a test for Celiac when I went in, and she said yes. She also warned me that some doctors are very uninformed about the disease, and may try to discourage me from getting the test, but that I should insist.
Amy sure was right. The doctor I saw (not my normal one) was hesitant to test me, saying that most people who have Celiac, lose weight not gain (a total myth I’ve learned), but I insisted that he test me, if only for peace of mind. I have good health insurance, I was getting blood drawn anyway, what is another test?
He agreed after my persistence, and the following week when my results came back I had a positive result for Celiac. That a normal test was under 20, and my test read at 132. I was so glad I stood my ground and got this test.
Over the next couple of weeks, I had a biopsy done of my small intestine, which came back as a positive indicator of Celiac. I met with a Gastro Intestinal Nurse Practitioner who spoke to me more about how my diet would be changing. She told me that because of the significant damage to my intestine, I need to be on a “not a crumb of Gluten” diet.
Throughout this whole process, I thought back to how happy I was that insisted on being tested for this, that I stood my ground at my initial doctor’s visit. I thought of the suffering and anguish I would have gone through had I not had Amy as a resource to even know that this condition could be affecting me.
Left untreated and without a diet change, Celiac Disease can cause brain, peripheral nervous system, bones or liver damage. It can also cause infertility and increase your likelihood of developing cancer.
As I stated before, Celiac isn’t something a lot of doctors outside of the specialty know much about, and is often misdiagnosed. The symptoms are things many people don’t talk about: bloating, gas, diarrhea, and weight gain or loss, just to name a few.
In the short time that I developed Celiac, roughly in the past 12-18 months I’m guessing, I found out that my small intestine have no signs of villi now (the small fingers that absorb food and nutrients) and I’ve suffered significant bone loss that cannot be replaced, including 20% of my spine. My villi will grow back over the next year as I stick to a strict Gluten Free diet, my bone mass, however, will never return.
The reason Jen wanted me to share this story with you, is so that it may open your eyes to this possible condition in you, or a friend or family member. I don’t want anyone to have to suffer with this disease and feel as sluggish, bloated and nasty as I did pre-diagnosis. I also don’t want anyone else to experience the permanent repercussions of Celiac that I do.
I’m obviously not a medical professional, but if you’d like to ask me any questions, or offer any advice, I’d love to hear from you! Feel free to e-mail me at: AlexaTaleof2Cities@gmail.com.