“Be your own advocate and be healthy! Nobody knows our bodies like we do. We have to take that knowledge, speak up when problems arise, and keep pushing for answers.
Several years ago, I felt like I was dying. I had no idea what was wrong with me and neither did the doctors. I had nausea that never ended, stomach pain that felt like I had been punched in the gut, reflux that woke me up every night – choking on the acid that crept up my throat, sleeping only 1-2 hours per night, hair loss, extreme lethargy, and weight loss that I couldn’t seem to control.
One doctor treated me for heartburn and reflux. Another doctor suggested that I start a low dose of depression medication; I’ve never had an issue with depression. I do have a history of Celiac disease in my family – a highly genetic disease where the ingestion of gluten causes damage to the small intestine. I requested to have a Tissue Transglutaminase Antibodies test done, a test that is known to be inaccurate. The doctor agreed, but the test came back negative. I asked if perhaps I should have an endoscopy done to see if I had small intestinal damage from Celiac. “Oh no, that is not needed.” said my doctor.
It was time to take my health into my own hands.
After three years of researching my symptoms, talking to family members diagnosed with Celiac disease, and documenting my symptoms, I decided that I needed to find a company who would perform a genetic test for me. Within a week, the lab sent my test results back. My lab results said “Highest Elevated Risk.” My doctor finally gave me a diagnosis – Celiac disease.
Almost two years after my diagnosis, I have gained almost 30lbs., my energy is back, my hair has thickened again, and I’m finally beginning to feel like myself. The biggest lesson I have learned is that I need to be my own advocate. I listened to my body, pushed for answers, and didn’t back down until I found what I was looking for.
Some day I hope researchers come up with a better way of testing for Celiac disease – a more fool-proof test. Celiac disease is highly genetic. If you have family members with Celiac disease, please get tested. Ask your mother, father, sisters, brothers, and children to get tested. Do the simple genetic test (a cheek swab) to see if it is even possible to have Celiac disease. If so, further invasive testing may be warranted.
Be your own advocate and be healthy!”
My favorite quote is by Dr. Maya Angelou “I learned a long time ago the wisest thing I can do is be on my own side, be an advocate for myself and others like me.”
From Heidi Love, Admin: Please join the conversation. If you have questions or comments for Erin, inspiration for others, or you’d just like to let us know we aren’t writing alone, we hope you will comment below. You never know whom you might inspire or where it might lead.
For More about Celiac Disease, please click here. Also Christina McGrath from verywell.com was kind enough to provide a Guide to Celiac disease. Thanks Christina and welcome to the tribe. https://www.verywellhealth.com/celiac-disease-4014748lso