Thirteen years ago I was struggling with intestinal illness so severe I would sometimes run (literally) to the bathroom twenty times a day. My doctor (who I shall not name- don’t get me started!) said I had IBS and that there was little that could be done. So, I started a journey to try find a way to get out of the restroom and return to a normal life. I was never given a colonoscopy, nor an endoscopy nor much beyond basic blood tests twelve years ago.
At the advice of my mom, a pharmacist, I read a copy of “Eat Right for Your Type“, a book that guides you through how to eat based upon your blood type. It was worth a try – any improvement would be welcome- and I was desperate to feel better. I read it cover to cover in a couple days. I read it again. I compiled a list and headed out to Whole Foods armed with a list of foods to avoid and a list to eat more of , and crossed my fingers. On my list of things to evade were corn, wheat (foreshadowing here), chicken and tomatoes; I headed for leafy greens, kefir and other ‘beneficial’ foods, and picked up a couple loaves of ‘sprouted wheat’ bread – a food thought to not be as ‘bad’ as wheat and tolerable by most “type Bs”.
In the weeks and months that followed, my symptoms did improve, but from time to time they would rebound- and I would be sent running for the nearest lavatory. I was tired, irritable, and sometimes felt incredibly blue. I had no empirical evidence for why I felt this way (my doctor still claimed it was IBS) but my gut told me it had something to do with food. I couldn’t stop thinking about the connection between what I ate and how I felt. I knew that a dinner of rice, red meat and green vegetables made me feel a little better for the next day (just as the Blood Type Diet suggested) but I couldn’t quite pinpoint exactly which foods were causing the mad dash for the restroom – with the exception of chicken – which I began to (and still do) avoid like the plague.
Life went on, despite the bouts of cramps and ‘the crankies’. I was working a stressful full time (and a half) job, and when the symptoms flared in full force my doctor again dismissed it as IBS.
And then my dad got colon cancer. I was scared. I thought about how I had never had anyone take a look to ensure I didn’t have cancer. My pain sometimes was so intense that I feared I was dying, and I too had cancer just like my dad. My mother’s brother had died of colon cancer. My friend had died of colon cancer while under the care of the same doctor that had called her symptoms IBS for years. I knew I needed to get a second opinion- but where?
A couple month later, I went to see a new GYN, Dr. Louie-Ng. He asked me all about my health (not just the parts I went there for him to see!) and he was concerned that I had a string of unanswered concerns. He referred me to a physician who finally listened, ran blood tests…and then that doctor literally went out of business – Poof! just like that he was gone. No test results –nothing. Before I knew it a year had passed, a year of fewer symptoms and a much needed change in employment with much less stress, and it was time to see Dr. Ng again. He referred me to an Internist that he trusted , Dr. Frederick Lennon, and this time I was finally heard.
Dr. Lennon agreed that I had enough unresolved symptoms and family history to warrant a trip to a specialist, and he referred me to Dr. Kenneth Josevitz, a gastroenterologist. Dr. J (as his patients call him) felt that a colonoscopy should be performed and within two weeks I was on the calendar.
In the groggy haze of the recovery room I awoke to Dr. J saying, “Do you want the good, the bad or the ugly?” He quickly said there was no ‘ugly’ – I didn’t have cancer, but there was ‘bad’. The test revealed intestines full of holes- and with a spinning head I gazed at pictures which where pink puffy inflammed tunnels of intestines – dotted with tiny ulcers – and scar tissue- LOTS of scar tissue. He said that the damage looked like I’d had “it” for years- if not a decade. “It” was Crohn’s disease. I had a faint memory of my mom once telling me about someone she knew with Crohn’s and that it was an ugly disease- and that I’d never want to have it. My doctor had just told me I did. It felt like a dream- a really bad dream.
At that appointment I had blood tests and was put on the anti-inflammatory drug , Asacol. Blood tests revealed that because of the severe ulceration I was very anemic- close to needing a transfusion. It would take months for the intestines to heal – and I would need large doses of iron and B12.
And I did begin to feel better – less bouts of running to the bathroom- less pain – less of all the unpleasant of the last thirteen years- but my gut was still saying something was still wrong.
My blood counts slowly climbed, but still lingered below normal. My energy was drained, my eyes were pink and sometimes streaked with bloodshot veins. And I was still so tired, oh so very tired.
After five months, Dr. J felt that because I still didn’t feel “better” and one of the results in the Celiac panel he ran was ‘borderline’ and might indicate I have a gluten allergy, he felt I should have an endoscopy. So I did. Guess what? I am a Celiac. For thirty-five years I’d been eating a substance that had put my body into an immune response frenzy.
I had Vitiligo by the time I was three.
I had eczema by the time I was five.
I had asthma by the time I was seven.
I had pain in my knees by the time I was seventeen.
I had Crohn’s disease by the time I was twenty-seven.
I spent 10 years running to the bathroom…
And at thirty-five they finally found a possible “why”…a protein that is called gluten. A protein that is EVERYWHERE.
Since I was diagnosed in March 2010 I have read thousands of pages of books, articles, blogs, posts and anything I can get my hands on. In July 2011 I had a full physical where for the first time I could remember my blood tests results were all NORMAL. Dr. Lennon said I was the picture of health.
And then , on September 22, 2011 I had a pulmonary embolism. I was lying in the hospital at 37 years old with a spray of blood clots across my right lung. I could have died. This time it wasn’t gluten – it was an outpatient procedure for varicose veins a week before- that caused it.
When you kiss death-it can make you step back and reevaluate where you are. I came home filled with an intense feeling of needing to help in the medical community – somewhere- somehow. Leaving a hospital leaves you feeling lucky (So Lucky!) to walk out.
And then I realized how I can help.
I can help those who are newly diagnosed with Celiac disease (gluten intolerance or sensitivity) figure out how to begin their gluten free journey. I know firsthand how scary, overwhelming, and downright depressing it feels when you are newly diagnosed. Suddenly you wonder if the food in your pantry is safe. You wonder if a simple comforting cup of tea will actually hurt you. Some ingredient lists looked like the hard end of a spelling bee study guide- and just as hard to interpret. Where was the gluten hiding– it never said in bold print GLUTEN as one of the ingredients.
But it doesn’t have to be hard.
We’ve started Inner Circle Foods and So Lucky Gifts so we can bring some ‘normal’ back to those who have this disease, are gluten intolerant, or just feel better avoiding gluten. To shop without being disappointed because the last ingredient you read on the box is “wheat flour”. To send a care package to a friend who is a celiac and give them the same qualify of gift you can give your ‘normal’ friends (trust me, we know ‘normal’ is a relative term!) To send a care package to your son or daughter at college with ease, all gluten free.
I am still alive. I am still able to follow my dreams. I have close friends that join me in my journey.
I am so lucky.
Inner Circle Chic