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Julie's Story

 
11/17/2008

Julie's Story

I've always had significant digestive problems. 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 worst. 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, constant diarrhea, major motion sickness in the car, major anxiety 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. I am 5'5, and my normal healthy weight is around 118 lbs. By the time the new symptoms began, I was down to 105 lbs. (And at my sickest point, I was 97 lbs!!!!)

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 some flattening of the villi, 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 doc admitted that he was truly puzzled about my case, so then he recommended that I see a neurologist. That doctor 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 I had a brain (thank goodness!), and it was healthy. But I was still at a loss as to why I was so sick. All I could do was pray for a miracle.

For the previous few months, I had been eating the BRAT diet to try to stop the diarrhea, and also 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 one 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 got tested for Celiac, and I told her the tests came back negative. She suggested I start the gluten-free diet right away, regardless of the fact that Celiac had been ruled out. 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 am now gluten free, dairy free, and I am a vegetarian too (I feel better overall when I don't eat meat or eggs), so finding foods that I can eat is a challenge, but I would rather deal with that than what I have dealt with 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 by trying new things when 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 3 years, and have gained even more weight back, so I'm about 114 lbs now, and feeling the best I 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 understanding 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 I have my life back. I am a new person!

My wish is to become an educator of Celiac Disease, and help others who are suffering like I did. Sometimes the symptoms and tests do not follow the "rules" of the book, and that is what makes the disease so tricky. I have already helped one friend of mine discover she has Celiac. She told me how she was feeling physically, and so I suggested that she ask her doctor to test her for Celiac, and sure enough, her tests came back positive. She is now feeling much better on the gluten free diet. And I want to be able to help so many more people! It's important to teach the public about this under-diagnosed digestive disease.

Does this story sound similar to your or a family members? You might have celiac disease, find out now, take our celiac disease symptoms checklist.

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