Celiac Disease: Your Questions Answered
For Stacey Rittenberg, a diagnosis of Celiac Disease inspired her to help others turn their lives around by changing their diet...
The year was 2002. I had just gotten married, spent 2 weeks in Hawaii and moved into a new home with my fabulous husband. But there was something not quite right. For the past year and a half, I had these nagging pains in my gut, headaches, fatigue and worst of all, seemingly spontaneous episodes of diarrhea, cha cha cha. What was going on? I chalked it up to stress. Planning a wedding, moving and becoming Mrs. Steven Rittenberg was enough to do that, right?
Once I settled into married life, I thought for sure my body would relax. Much to my dismay, things went from bad to worse. I could tell you where to find every bathroom (including port-a-potties) on my commute from Scarsdale to West Haverstraw. I loathed driving over the Tappan Zee Bridge every day. I prayed for the traffic G-ds to consider the churning in my gut. I figured if I got pulled over for speeding on my quest to find a toilet, soiling myself would get me out of a ticket. Luckily it never came to that!
I remember having to leave several restaurants doubled over in pain after only eating a few breadsticks. I attempted to celebrate a friend's birthday at a local bar. After only one beer, I spent the remainder of the celebration in the ladies room. Luckily the bathroom attendant had plenty of Oust! My husband tried to convince me there was something going on, but I chalked it up to some bad bar food.
We were now entering 2003 and things were not improving. Using the ultimate leverage any man could hold over his loving wife of limited child-bearing years, I was told that we were not going to even think about starting a family until I got myself checked out by a doctor. Three days later, I was sitting in the GI's office sporting a lovely paper gown.
The doctor thought that it could possibly be Irritable Bowel Syndrome, Crohn's Disease or Celiac Disease. Say what? She recommended I have an endoscopy and colonoscopy to confirm a diagnosis. Oh the joys! After some poking and prodding in places where cameras really shouldn't go, a biopsy concluded that in fact it was Celiac Disease. I finally had an answer. I was relieved and concerned all at the same time. I had lots of questions. What is Celiac Disease? What is gluten and why am I allergic to it? Is it going to kill me? Will I ever be able to eat M&M's again? Luckily for me, the doctor had just finished a fellowship at the Celiac Disease Center at Columbia University. She was very familiar with Celiac Disease and was able answer all of my questions.
What is Celiac Disease? Celiac disease is an inflammatory condition of the small intestine, caused by the ingestion of gluten. It interferes with the absorption of nutrients from food. It may be diagnosed at any age. It is thought to be a genetically linked autoimmune disease with an environmental trigger. So in other words, it is essentially a disease of malabsorption and malnutrition that I can blame on one of my parents. Thanks Dad!
What is Gluten? Gluten is the term for the storage proteins of wheat. In people with celiac disease, gluten causes the production of antibodies. The antibodies, in turn, attack the small intestine, reducing the ability to absorb nutrients.
Why me? Why some develop celiac disease is unclear. Us lucky ones are born with a genetic tendency to develop the disease. Something sets it off. Gastrointestinal infections may be a factor that can trigger the development of the disease. So technically it could have been the stress of planning a wedding. Another good reason to elope!
Is Celiac Disease common? It is considered to occur in about 1 per 250 individuals worldwide. According to the Celiac Disease Center, recent figures are 1 per 133 in the USA. I am not alone!
What symptoms are associated with Celiac Disease? Diarrhea does not have to occur to be diagnosed, just an added bonus for me. The majority of people with celiac disease actually have no idea that they have it! They may experience symptoms include bloating, abdominal pain, indigestion or heartburn. Some people have inexplicable weight loss, I wasn't that lucky. Actually I had been trying to lose weight most of my adult life. Since my body was not getting adequate nutrition it was holding onto every morsel I put into it. I lost 25 pounds by the end of my first year on a gluten free diet! No more counting points for me.
Some neurological symptoms such as peripheral neuropathy (a type of nerve damage that can cause numbness or weakness in the extremities), ataxia (poor balance or coordination) or epilepsy have also been associated with celiac disease. Dental enamel defects are frequent. That explained the white spots on my teeth!
What do I do about it? In the weeks that followed my initial diagnosis, I felt lost and alone. I was told that as long as I followed a strict gluten free diet my body would heal and my symptoms would go away. I pretty much had to trash most of what was in my pantry. In those days it was difficult to find gluten free foods. I went to the local markets and specialty stores. $7 for a loaf of bread that crumbled when you tried to take it out of the bag, $5 for a box of cookies that tasted like cardboard and $4 for a bag of pasta that turned into paste (apparently you did have to follow the coking directions). Seriously! I wouldn't have to worry about getting sick anymore because I wasn't going to be able to afford to buy food at this rate.
I made an appointment to meet with Dr. Green at Columbia University just to be sure. After all, I didn't want to have to give up my tasty gluten full bagels and pastas if I didn't have to. Nine months later, what can I say he was a very busy man, the guru of all things Celiac confirmed my diagnosis. Celiac Disease it was.
Thankfully, in 2011 Gluten Free foods have come a long way. The variety and increased availability of gluten free foods have made my life easier. There is even a gluten free restaurant awareness program. What a pleasure it is to be able to relax about eating out with friends and family. There are numerous celiac and gluten free organizations, blogs and support groups.
In September of 2010, I launched A Healthier You, L.L.P. a Wellness and Consulting firm. One of our goals is to educate the public on health related topics (without boring them to death). On February 12th, we are hosting a Gluten Free Wellness Party in West Harrison, NY. It will give those who attend an opportunity to learn about Celiac Disease and nutrition while mingling and eating delicious gluten free foods and desserts. You can even sample some gluten free beer! We will also have celiac friendly vendors, door prizes and gift bags. Everyone that attends will get a copy of The Ultimate Guide to Gluten-Free Living. A percentage of our proceeds will be donated to the Celiac Disease Center at Columbia University. What else could a celiac ask for...except an increased tolerance to gluten! Hope to see you there!
For more information or to register for this event call (914) 458-2249 or log on to www.ahy4life.com.
Stacey Rittenberg is a native New Yorker. She grew up on Long Island and currently resides in New Rochelle, NY. Stacey is married and has two beautiful children. Stacey earned her undergraduate degree in Biology from S.U.N.Y. Oswego in 1995. She went on to obtain her Masters in Physical Therapy from Nova Southeastern University in 1997. Stacey's desire to educate others led her to form A Healthier You, L.L.P., where she hopes to empower individuals who desire to take control of their health and well being.