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Serious disease dismissed as imagination

Julie suffered from a lot of stomach trouble as a child, and was diagnosed with irritable bowel syndrome (IBS) as a teenager. From adolescence into adulthood, she thought IBS was the reason for any new digestive problems she experienced. But after her third pregnancy, several symptoms appeared that were unlike anything she had felt before.

She began to feel tingling, numbness, joint pain, exhaustion, and anxiety in addition to the digestive discomfort she had always dealt with. When each new symptom progressed, Julie went to her doctor at the time, who sent her to a variety of specialists. Over several years she had abdomen scans, chest x-rays, a brain MRI, blood tests – and nothing was found to be wrong. Her doctor finally told her that she needed to go see a counselor because she was a hypochondriac. Julie knew something was really wrong, so she persisted.

“I had recently heard that many people diagnosed with irritable bowel syndrome actually have celiac disease, so I went to my doctor and asked specifically for the blood test screening for celiac disease. My results were so high that it was clear just from the screening without the endoscopy that I had the disease. They called me and told me to stop eating gluten and to go see a nutritionist. I hung up the phone, researched celiac disease, and it was scary to see all the things that are associated with it. And I wondered if I should just see a nutritionist. Shouldn’t I see a gastroenterologist?”

Julie had experienced first-hand just how important it was to find a doctor that would listen to her. Through online search, she found Allegheny Health Network’s Celiac Disease Center. “And I knew just from their website that they were up on all of the current research that has just been discovered in recent years. I could also see a gastroenterologist who specialized in celiac disease, and a dietician, and a nutritionist, all at the same place. I honestly felt like I had hit the lottery.”

Julie met with Dr. Heitham Abdul-Baki, director of the Celiac Disease Center, who patiently explained the details of the disease and answered all of her questions. He also explained that celiac disease is genetic, and advised that she have her three children tested for both for the gene and for the disease. All three of her children have the gene, and her youngest child, who was five at the time, was found to have the disease. While that was hard news to hear, Julie says she’s grateful that Dr. Abdul-Baki’s advice saved her daughter from potential health problems because she didn’t have symptoms to show she had the disease.

Julie often has to explain to people that celiac disease is not a food allergy, it’s a serious autoimmune disease. With celiac disease, the body is confused by gluten and thinks it’s virus or a bacteria, so it creates antibodies and attacks itself, especially the small intestine. This can lead to a lot of different health problems, not just gastro intestinal symptoms, but also neurological symptoms, bone problems, or cancer. Julie and her family have spent a lot of time learning the hidden sources of gluten and doing their best to keep Julie and her daughter safe from exposure, including ways to avoid cross contamination in the kitchen and inspecting products carefully.

“The nutritionist helped me understand that you can’t really just read a label on food and even things like lip balm and play dough and know if it has gluten or not. There are over a hundred words that mean gluten, and nobody can keep them all in their mind. Gluten can be in preservatives, or food colorings. So she explained how complicated it is and alerted me to how dangerous cross contamination can be.”

#LivingProof

Learn more about the Autoimmunity Institute.

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