NFCA welcomes Susan Maloney!
The National Foundation for Celiac Awareness is happy to introduce our newest Athlete for Awareness – Susan Maloney. Susan is involved in the Department of Nursing at Edinboro University of Pennsylvania and has a PhD and CRNP. Not only does Susan have an extensive background in healthcare, but she is an active bodybuilder as well.
For her first Athletes for Awareness blog contribution, Susan speaks out about her recent celiac diagnosis (January 2011) and going gluten-free. Read more below to get the full story of how Susan Restored Her Health and Reclaimed Her Life!
1. What symptoms had you experienced prior to becoming diagnosed?
Interestingly, as an athlete who’s sport is natural drug free bodybuilding, many of my symptoms came to light (despite me not recognizing them as such) as I started changing my diet to that of a competitive bodybuilder. I significantly increased my protein, dropped a lot of the trigger carbs and fiber, and I passed off the unrelenting constipation, abdominal distention, bloating, intermittent vomiting and continued dairy intolerance to drastic dietary and lifestyle changes.
2. How long were you misdiagnosed?
I had struggled with chronic and persistent constipation for years, heat/cold intolerance, stopped having periods in my 30’s, and what I have come to know now are many of the atypical symptoms of celiac disease. However, I was never screened or tested specifically for it.
I think this was one of the most frustrating aspects early on as I was so desperate to understand why I was feeling so ill, and received far less than compassionate care. I had never before struggled with low energy, as I am someone who’s typically highly motivated, energized, positive and upbeat. But the fatigue and GI symptoms I was experiencing were overwhelming to the point where I wasn’t functioning well at all!
When my symptoms escalated to a point where I couldn’t go to the bathroom for weeks at a time and was vomiting daily, I sought a referral to a GI specialist.
3. What were you misdiagnosed with?
The gastroenterologist I saw initially told me he thought I had irritable bowel syndrome and that “if we can get you to have a bowel movement once or twice a week, that may be the best you get.” The physician actually came into the room and looked at me and told me he could tell I worked out, and then asked me if I was one of those “crazy people who do competitions and eat 20 eggs/day.” I paused and did a little count in my head and determined that I actually eat about 16-18 egg whites/day, and have competed for the last 3 years; yes, I guess I am one of “those crazy people”!
My initial celiac panel (which I had to ask to be tested for) came back negative. However, by the time I was tested, I had been gluten-free for over 3 months. Follow-up testing and diagnostics that I had to pursue and go find a different clinician to perform, confirmed my diagnosis after what seemed an unnecessary delay with a great deal of physical and emotional angst as I was trying to make sense of my symptoms.
4. As an athlete, what was the experience adjusting to a gluten-free lifestyle like?
Initially I was struggling to just get through my days energy wise. I don’t feel I gave my best at my job and to the parenting of my daughter, who suffered every night when she would ask me if we could go to the gym, or do any activity. I had to tell her that I was too exhausted, throwing up, or lying on the couch with a belly so distended that it hurt just to bend over and put shoes on.
And, I know I didn’t bring my best in the gym each day for my lifting partner. For the first time in my life, I just didn’t even want to go to the gym! That was what really got my attention and I knew something was really wrong with me. Having never felt that way before, it was scary!
Changing to gluten-free foods left me with some new symptoms as my body responded to the different glycemic index of these foods; I wasn’t tolerating the essential fats that are found in many gluten-free foods, and my symptoms and tolerance to new foods was a big struggle for me.
5. How has your health and quality of life improved since going gluten-free?
I was diagnosed in January 2011 right in the middle of my prep to get ready to compete in a big Pro show. I will say that this show prep was the most grueling and challenging of all the shows I’ve done. There was a part of me that simply could not give in to the symptoms and challenges I was feeling daily…and I think this helped me to feel more in control of both my symptoms and this new diagnosis.
I competed in that Pro show in May 2011 and took second place to a great competitor. I was pleased and happy to simply stand on the stage given the journey it took to get there.
I think if I were to identify any specific health benefits since being diagnosed with Celiac disease I would have to say that it has forced me to be more gentle with myself, more patient, more aware of what my body needs, and a determination to not let this limit any goals and dreams I have for myself as an athlete.
I also feel good knowing that I am only putting 100% pure and non-toxic foods in my body now. Despite this not really being a choice or option for me…it empowers me to feel stronger and more in control over my disease.
6. Why have you decided to become an NFCA Athlete for Awareness?
Given that I work as a family nurse practitioner/educator and psychologist, I am now aggressively passionate to help educate the masses about celiac disease since my diagnosis; this can only be a win/win in my opinion. I’ve also met such wonderfully caring people since my diagnosis, and I believe that the opportunities and blessings that will continue to come my way, as I am fortunate to now work with the National Foundation for Celiac Awareness.