Congratulations to Sarah Casebolt – She is the very first Pretty Little Celiac of the Month!!
When I read her story, I teared up and couldn’t believe her amazing strength during this journey.
~My Celiac story is interesting, back track to 1983 or so and I was a young one-3 years old. I had entered Kaiser Hospital in California because I was literally going to the bathroom 20-30 times a day, I looked well pregnant which is obviously odd for a 3 year old. I lived in the hospital off and on for almost a year and was living in the children’s ICU. It came up finally that I had Giardia which is a parasite, but that was odd as this is usually caught from streams, creeks, rivers, mountain areas, etc. Regardless I was released and told to live on, yet the symptoms where always present.
Fast forward nearly 30 years and here I am STILL dealing with issues, I am a working professional yet I cannot eat at work for fear of running to the restroom. I was in the Air Force for nearly 13 years and had the same fears, issues, and I was a flight medic so I was always hungry to say the least on those long flights transporting injured from Iraq and Germany.
Yet I digress, in 2005 I was tested for Celiac disease via the ever awful Colonoscopy and the Dr stated “He was not sure!”
Hmmm, so I went from Dr to Dr trying to find SOMETHING that resembled a diagnosis, during this time I began having major thyroid issues, an overactive thyroid caused me to be very skinny to the point of looking like death. Dr’s said the culprit was my thyroid, yet I did not really believe that, in fact I started doing research on my own because I felt I had no other way. I finally moved to Colorado Springs, now married we wanted to have a baby yet after 8 miscarriages at around the 12-16 week mark we sought help from an infertility specialist and became parents to beautiful girl/boy twins in 2009, then another daughter in 2010-yet despite these babies I always had a “tender” stomach and if I ate something wrong I was in for it.
In December 2011, they removed my Thyroid and said all my problems would disappear, how dumb I was to believe them! I took my thyroid replacement medication from there on out, once daily and during this time my husband who is still in the Air Force went to Korea and it would be a year long time away from his family, so I became a single mommy not near family and still sick, still could hardly eat. In late February of 2012 my wonderful neighbor who is a retired nurse came over, at this point I weighed maybe 100 pounds, she said “Sarah either you head to the ER or I take you.” I did not see what others saw until I allowed myself to see how much weight I lost, I was literally shutting down, she took me to the ER the next morning, demanding admission for me, my thyroid levels were 195 when “normal” is 4-9.
My organs began shutting down, I had oxygen on, the nurses and technicians were contemplating ICU, made me sign over rights to Kathy my neighbor until my husband or parents could get there. WOW! I was put in ICU, on pain medications because of the horrible stomach pains I live with daily, and was seen by a GI Dr who would be my savior at the end of this story. I was prepped for an EGD/Colonoscopy the next morning, sadly due to malabsorption due to lack of thyroid and GI issues so severe I was not able to absorb the conscious sedation so yes you guessed it, I was awake and mean WIDE AWAKE the entire procedure, talk about painful and awful. The next morning it was revealed I had Colangelous Colitis in my lower intestine, Gastro-paresthis in my upper intestine and severe malnutrition, not to mention my horrendous thyroid levels that could kill me if not taken care of.
I began a lengthy hospital stay, filled with TONS of steroids, and tests, you name it and I had it. At this point thank God my parents flew in to watch my children all under 3, and the Red Cross was working on getting my husband home to help. I went home several weeks later very gaunt, sick still, but thankfully the Air Force gave me my husband for 3 weeks. I was off work for nearly 2 months, returned in the end of May.
We have had a great summer with my kids and I, single parent duty still until 3 weeks ago symptoms returned, I had another EGD/Colonoscopy just this past Friday so we will see but even living a VERY STRICT Gluten free lifestyle I am sick again some how, I am literally at a loss. I am back to eating 2 meals a day if I can even keep that in and simply doing my best to be a single parent since my husband is still in Korea. My Dr on Friday was at a loss but said he will find the cause and help me, this GI group has been amazing and I am so blessed yet I still am having a tough time.
I am now at 150 pounds and for my 5’2 frame it is heavy, I am on steroids for inflammation and other types of steroidal medications to help me day to day until we know what is wrong. I do know this I have a VERY SEVERE case of Celiac disease, my children now eat what I eat, we all love organic fruits and veggies, and Gluten free products. This is my story, I am still living it but I find peace in your blog and others in knowing I am not alone in this journey that at times feels like a nightmare. I am so glad I could share my story with you.