May Is Celiac Disease Awareness Month
Annually, May is celiac disease awareness month. I value this month because it brings everyone together to focus on an important topic, celiac disease (CD) and gluten intolerance awareness. After suffering for many years, I was finally diagnosed with celiac disease in 2004. I consider myself lucky because only 3% are diagnosed. The other 97% are unaware that their symptoms are related to the ingestion of gluten (wheat, rye, barley, and for some people oats) and, unfortunately, are living a decreased quality of life with the risk of multiple complications. As well, many are living with a non-celiac gluten intolerance which is also very under recognized and under diagnosed. Combined, this can lead to unnecessary suffering, increased doctors visits, increased hospital visits, and possibly death due to all the possible associated complications. This can drastically reduce an individual’s quality of life and adds an additional strain to an already overstressed healthcare system. Collectively, we need to increase awareness to effectively address this public health concern.
May 2009, I started to write a 12 part series about celiac disease and gluten intolerance. The series discusses how gluten can affect each physiological system in the body and the last post includes a symptom checklist (see below). My hope is that this series will empower individuals with the knowledge, information, and references they need to have a meaningful discussion with their doctor. My blog also includes a podcast about diagnosis and all of the ways false negatives can occur. For me, blogging has proven to be a very instrumental way to increase awareness globally. I have found my posts translated into Dutch, Polish, Cantonese, German, and Spanish which is encouraging since undiagnosed CD and gluten intolerance is a global public health problem. As well, I am actively trying to increase awareness through my business (I’m a Celiac Nurse And Gluten Intolerance Consultant), Twitter, Facebook, and Medpedia.
This month, there are many ways that everyone affected by gluten intolerance can increase awareness. Ideas include blogging, using social media, writing in to your local newspaper, sharing information with friends, and participating in the activities or events your local support group has organized. So far, my extra activities this month include volunteering for a local event and sharing a gluten-free recipe (my favorite lemon meringue pie) along with information about CD and gluten intolerance with a BC newspaper. There are so many ways to help. Please share your ideas for increasing awareness below. Perhaps there is another way I can help:)
12 Part Series About Celiac Disease And Gluten Intolerance
1. Part 1 of 12 Part Series: Gastrointestinal Symptoms in Undiagnosed Celiac Disease (includes non-celiac gluten intolerance information at the bottom)
2. Part 2 Of 12 Part Series: Fatigue, Anemia, and Abnormal Bleeding Or Bruising In Undiagnosed Celiac Disease (includes non-celiac gluten intolerance information at the bottom)
4. Part 4 Of 12 Part Series: Skin Rashes, Hair, And Nail Symptoms In Undiagnosed Celiac Disease (includes non-celiac gluten intolerance)
5. Part 5 Of 12 Part Series: Musculoskeletal (Rickets, Osteomalacia, Osteopenia, Osteoporosis, Arthritis, And Myopathies) Symptoms In Undiagnosed Celiac Disease (includes non-celiac gluten intolerance and allergies)
6. Part 6 Of 12 Part Series: Reproductive (Delayed Puberty, Amenorrhea, Infertility, Impotence, Chronic Pelvic Pain, Fetal Complications, Premature Birth, Miscarriages, And Early Menopause) Symptoms In Undiagnosed Celiac Disease (includes non-celiac gluten intolerance)
Many are suffering and quite likely many are dying globally due to undiagnosed celiac disease and gluten intolerance. This breaks my heart when I think of grandparents being lost, couples dealing with infertility or pregnancy issues (potentially leading to loss of a baby), mothers struggling with illness, children with cognitive disabilities that may affect their ability to achieve their potential in life, and many others who are suffering with a variety of misdiagnosis. All of this unnecessary suffering could be prevented with early recognition, diagnosis, and the maintenance of a gluten-free diet. Increasing awareness through a variety of activities can help increase public awareness and help doctors and nurses to include CD and gluten intolerance on their radar while assessing patients. Together, we can all help in our own way to get the 97% that are undiagnosed down to 0.