Long Road to Overcoming Celiac Disease
by Julie Wendell
I've always had significant digestive problems my entire life. In fact, when I was an infant, my parents lovingly called me "diarrhea-baby". By the time I was in kindergarten, my mom was tired of my complaining about having a stomachache every day, so she finally took me to see the doctor, who diagnosed me with lactose intolerance and completely cut out dairy from my diet. So throughout elementary school, the stomachaches were less severe, but still there.
In middle school and high school, I remember not being involved with too many social activities, since I always had to make sure I was within 10 ft of a bathroom. My friends thought I was strange and somewhat of a hermit, and they rarely invited me to go anywhere with them. Besides, I was just embarrassed to be around people and hated that I was always in a lot of pain. No one understood what I was going through, and they all thought I was over-exaggerating and feeling sorry for myself. And honestly, I didn't know exactly what was wrong with me. All I knew is I barely got any sleep and the toilet became my constant companion.
In college, I continued having pain and diarrhea, but finally got to see an actual gastroenterologist when I was 20. (My mom never took me to a gastroenterologist when I was younger because we couldn't afford it.) The doctor did a colonoscopy and endoscopy on me, and told me that my digestive system and its problems were equal to what he sees in the average 70 yr old. The doctor diagnosed me with GERD and IBS. In my early to mid 20's, I still suffered from a lot of pain. I should've bought stock in Imodium, Phayzyme, Tums, and Pepto Bismol, I took so much of those type of medicines. My entire life seemed to revolve around pain, nausea, and diarrhea.
But by the time I was 26 yrs old, my health took a definite and sudden turn for the worse. I could barely get out of bed every morning and take care of my 2 yr old son at the time. New symptoms flared up severely, and they included severe dizziness, joint pain and also muscle pain/tingling, jolts (spasms) of my whole body, hot flashes, cold sweats, severe abdominal pain where I could barely breathe, major motion sickness in the car, anxiety and panic attacks, and depression. I lost a significant amount of weight in a matter of 3 months, though I was trying to eat anything that would stay down. By this time, I was down to 105 lbs. (And at my sickest point, I was 97 lbs!!!! and I am 5'5 tall!) I was literally spending 5-7 hrs in the bathroom in a 24 hr period.
I kept going back to the gastroenterologist, in desperate need for help. He ran about 15 tests on me, including another colonoscopy/endoscopy, barium enema (one of the most painful tests they ever did!), small bowel series, CT scans, ultrasounds, Xrays, bloodwork, you name it! The most frustrating thing was that every test came back completely normal, except the small bowel series, which did indicate flattening of the villi that would indicate only Celiac Disease, so the doctor ordered the Celiac blood test, and did a biopsy of my small bowel (during the colonoscopy). Both tests came back negative! So of course he didn't further investigate the Celiac aspect.
Finally the doctor admitted that he was truly puzzled about my case, so then he recommended that I see a neurologist, who wanted to test me for Meniere's Disease (chronic vertigo) or even a brain tumor. So I underwent 2 MRI's of the brain, both showing that yes, I had a brain (thank goodness!), and yes, it was healthy. But the doctors were still at a loss as to why I was so sick. All he could do was prescribe Phenergan for the nausea, Imodium for the diarrhea, and Wellbutrin for the anxiety/depression. And all I could do was pray for a miracle.
I had been eating the bland BRAT diet (Bananas, Rice, Applesauce, and Toast) to try to stop the diarrhea. I had also been eating plain bagels, graham crackers, saltines, anything to alleviate my stomach pains (and unknowingly I was poisoning myself even more!), and yet I was in the bathroom constantly. So at this point, I picked up the yellow pages and looked up dieticians in the area. But unfortunately most of the dieticians in the area would not even see me,
since at the time I was on Medicaid. Finally, I found a wonderful dietician who talked to me on the phone for a few minutes, and decided she would see me even though she didn't take my insurance. She was determined to help me.
After some discussion, the dietician asked me whether I had gotten tested for Celiac Disease because I did have flattened villi in my small intestines. I told her yes, but the tests came back negative. She said that the celiac tests tend to be only 70% accurate. Therefore, she wanted me to start the gluten-free diet right away, regardless of the fact that Celiac had been ruled out by the doctor. Then she said to call her in a week or so, and let her know how I was doing. I had no idea what "gluten-free" meant, so she gave me some information on it, plus I had to do some research on my own. I didn't even think this insane diet was going to work, but I was at the end of my wits, so I was willing to try anything!
So the next day, I started the gluten-free diet, and within a few days, I started feeling TONS better! The diarrhea and the abdominal pain diminished, and I stopped feeling so dizzy. I called the dietician back the following week, and thanked her for saving my life, both in the mental and physical sense. In the following months, I re-gained about 8 lbs! I felt so relieved that the worst part of my suffering was finally over, and that there WAS an answer to my problem! And that I wasn't crazy after all! The gluten free diet was a complete miracle for me, and the exact answer to my prayers!
I called my gastroenterologist and told him the news. So he reviewed my long-term symptoms, put two and two together, and officially diagnosed me with Celiac Disease, an auto-immune digestive disease. I will have to follow a strict gluten free diet for the rest of my life. Gluten is a wheat protein, and it has many derivatives that I also have to avoid.
Finding foods that do not contain gluten is a challenge, but I would rather deal with that than what I have dealt with for the majority of my life--excruciating pain! I have found a few health food stores in the area that carry foods I can eat, and have been broadening my food spectrum whenever I can. I have learned to be very open-minded and adventurous eater when it comes to my diet. I eat a lot of tofu, brown rice, potatoes, vegetables, and fruit, and make sure I take my vitamins every day, esp Vitamin B12.
I have been gluten free for 7 years, and have gained almost all my healthy weight back, so I'm about 114 lbs now, and feeling the best I have ever felt in my life. Yes I still do have my bad days, but overall I can say my health has improved 3000%! It was a complete miracle that I came across the dietician that was willing to help me even though she didn't accept my insurance. If she hadn't been so generous and willing to help me, I have no idea where I would be right now. I sometimes think back at what I went through, and wonder how I endured such pain. Sometimes I even get teary-eyed, because I am so thankful that I have my life back. I am a new person!
My wish is to become an educator and spokesperson of Celiac Disease and also an advocate of Celiac Awareness. I want to provide help and support for those who are suffering like I had suffered. Sometimes diseases and tests do not follow the "rules" of the book, and so that's what makes Celiac disease so tricky. I have already helped 2 friends discover they have Celiac. They both told me how they was feeling physically, and so I suggested that they ask their doctors to test them for Celiac, and sure enough, their tests came back positive. They are both feeling so much better on the gluten free diet. So I want to help many more people! That is why I wrote this article, and also I have started writing a book about Celiac Disease, and I'm hoping to publish it by the end of the year. It's important to me to help teach the public about this under-diagnosed auto-immune digestive disease that is not widely known throughout the world.