This is not a sexy story. It’s not glamorous. It’s certainly not a beauty queen story. It’s just my Gluten discovery story and I hope it can help a lot of people.
I’m an all-or-nothing kind of girl….go big or go home. So as we delve into this awesome world of Gluten issues, brace yourselves cause it ain’t pretty. You know how Dr. Oz always talks about poop? What’s the color? What’s the shape? Is yours normal or not? He highlights these questions and many more in his “No Embarrassment” episode, and by the end of this blog, you’ll be asking yourself the same thing.
There are literally hundreds of symptom combinations that revolve around Gluten. Yours may not be like mine. You may have more or less symptoms than mine. I’m not a doctor nor do I claim to be. This blog is not your Bible. My hope is that by learning of my investigation, you will feel comfortable enough to do the same for your issues. I would also check out http://www.celiaccenter.org when you get a chance. All the information comes from my doctor, Alessio Fasano. So without further adieu here is my discovery story.
My daughter, Airlie, was born in April 2010. By that fall, I had finished nursing her and my body & its hormones were starting to get back to “normal.” By that December, I started noticing constant abdominal pain. With that, came debilitating headaches, joint aches and all around feeling like crap. I took a visit to my OBGYN, learned nothing of my problems and went on my way into the New Year. Come February of 2011, I was so fatigued, I could barely make it through the day. I’d be movin and shakin and all of a sudden would feel like I had been hit by a Mack truck. For my fellow mamas out there, I felt like I was in my first trimester all over again. 4 pregnancy tests later and another trip to my OBGYN, I was not pregnant and was still fatigued, with headaches, abdominal cramps and joint aches. Heading into Spring, every time I ate, you would have thought I was 5 months pregnant. After EVERY meal, my stomach became so distended and bloated that I should have had people patting my belly asking my due date. Once Summer hit, I started having serious issues. My lower back hurt so bad, every day, that I couldn’t put my daughter in her crib without moaning in pain. I couldn’t lift anything heavy or bend over too far without excruciating pain. Never did I think what I was eating was causing this. I started getting foggy brain or when you’re pregnant, we call it “mama brain.” I’d look at a glass of water on the table and couldn’t form the sentence to ask my husband to bring me the glass. I literally could not form simple sentences and it drove me crazy! I would eat a meal and not 20 minutes later, would be doubled over on the sofa, unable to move for hours. I’d be standing at the sink washing dishes, trying to hold myself up on the counter, my body hurt so bad. And to the Dr. Oz part, would have constipation, diarrhea, gas and everything in between. Sometimes the pain was so bad, I thought I would pass out. Then my hair started falling out. I had already been through the thin-to-thick-to-thin hair process some deal with while pregnant. So I knew this was something else. Gobs of hair would fall out in the shower, as I brushed my hair or even ran my fingers through it. Little red bumps (the size of normal mosquito bites) appeared on my thighs and my scalp. And by August, I couldn’t gain weight if I tried. As you should know by now, that’s virtually impossible for me, so that was a huge red flag. Every day I was miserable. I was in pain and it seemed as if no one could help me.
By that time, I had been to my OBGYN a third time, she removed my IUD birth control in case that had been the culprit. It was not. I had a CT Scan done in case it was my appendix. It was not. Nor was it my liver, gall bladder or pancreas. I had visited a GI doctor, had a colonoscopy and endoscopy done only for the doctor to tell me I was stressed and to come back when I was 50. That went over rreeeaaallll well with me. I didn’t have Crohn’s Disease, polyps or ulcerative colitis. So I was sent home with a big fat bill, still sick and no answer. My step-mom was diagnosed with Celiac Disease over 20 years ago. I had watched her struggle and learn to live with it. After all my procedures and still no cure, she suggested I go Gluten Free for a few days. It was the beginning of October, I felt hopeless and was willing to try anything. Within 3 days I felt like a completely new person. It was unbelievable! The back, the stomach, my joints, everything stopped hurting.
Now the golden test for Celiac Disease is to check the villi in the stomach during an endoscopy. If they are “flattened,” they have worn down due to a lack of nutrients from the negative reaction to gluten. Mine had looked fine. The GI doctor had told me I probably had irritable bowel syndrome because nothing Celiac related had shown up. Well, a week into my Gluten Free eating, I had accidentally been served a gluten dish while out to eat. I was up all night in horrible pain and I was as mad as a hornet. I knew I couldn’t have gluten but no doctor was able to help me! At 1:00 that morning, I found an email address online for Dr. Alessio Fasano, the doctor I had been studying for months, researching possible diagnoses for me. So I emailed him and yes I played my Miss USA card. I was desperate for someone to hear me and help. Within 30 minutes he had emailed me back and told me to call his office on Monday. I was shocked, relieved and nervous at the same time. By Monday I had an appointment set up to meet with him in Baltimore at the University of Maryland, where at the time, the Center for Celiac Disease, was located. (They have moved their research center to Boston’s MassGeneral Hospital for Children.)
Two weeks later, I was sitting in Dr. Fasano’s office, had blood work done and learned of a huge, unknown world called Gluten Intolerance. I learned that I did not have Celiac Disease, but had what probably most Americans have but don’t know it, gluten sensitivity. This is not a food allergy, yet my body simply cannot digest gluten. And when gluten is ingested, all other areas of my body are affected and are been pulled on to try and process it, thus making me miserable. There’s no simple test for gluten sensitivity. It’s a detective game and patients need to take the lead on the case to truly find a solution because most doctors won’t – as I found out. So I’ve been on a GF diet ever since. Dr. Fasano thinks childbirth triggered my gluten sensitivity. Some of these symptoms, I’d had small traces of my whole life. I knew they were there but never really paid much attention to them. I just kind of lived with them. But after I had Airlie, the symptoms intensified where I couldn’t ignore or live with them.
This is my gluten free life. I don’t always love it. I always miss my favorite gluten foods, until I accidentally eat something and am sick for 3 days. It’s a pain in the butt sometimes (no pun intended) but I’m so thankful to God for it. I have it for a reason and because of word of mouth, I was on the road to discovery & recovery. Which is why I’m so eager to share everything with you. If you feel like you may have gluten sensitivity, please do the research and speak to your doctor about the things going on with you body. It’s so worth it to be proactive!