20 Nov Celiac Disease in the Trenches
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By Dr. Jennifer Salcido, ND
For most newsletters I do a significant amount of research before writing my articles and this newsletter is no different except this time instead of rifling through journal articles I had the pleasure of interviewing my sister who has been actively dealing with Celiac disease for the past few years. Let’s call her B.
Dr. S: What were your initial symptoms that led you to seek medical care?
B: I had severe bloating, abdominal pain, brain fog, fatigue, and a very noisy tummy that was always rumbling.
Dr. S: How long did it take you before you were diagnosed with Celiac disease?
B: It actually took 3 years, but if I think back I had been dealing with it much longer, more like ten years. I had many tests and was recommended numerous treatments but nothing helped. Finally I saw a gastroenterologist who was very thorough and ran a simple blood test looking for antibodies to gluten and they were off the chart. He had me see a dietician right away and I cut gluten out of my diet.
Dr. S: How long did it take for you to start feeling better?
B: I felt noticeably better within a few weeks but it probably took a year for all the inflammation to go away. My stomach kept shrinking and shrinking. I didn’t lose any weight but I lost inflammation and circumference.
Dr. S: What was the hardest part of going gluten-free?
B: At first it was hard to give up all the comfort foods but then I found cheating wasn’t worth it. The other big difficulty was eating out. I found that most restaurants are not safe for people with Celiac. Even if the food I ordered was gluten-free if the restaurant did not have a dedicated gluten-free kitchen I would get sick from cross-contamination. At home I have to use a separate toaster, pots, pans, cutting board, and utensils to avoid cross-contamination.
Dr. S: What have you found to be the worst “hidden” sources of gluten?
B: Salad dressings, flavored teas, soups, soy sauce, condiments in general, prepackages spice mixes, natural flavors, beauty products, medications, and supplements. I have found most vegetable capsules are okay, but gelcaps often contain gluten. For people who partake in alcohol they have to watch out for gluten in beer, hard alcohols, and wine. People usually think that wine is gluten-free but it may not be depending on how it is processed and stored.
Dr. S: What resources have you found helpful and what advice do you have for people who have been recently diagnosed with Celiac?
B: I actually found that the best resource was a book recommended to me by my dietician, Celiac for Dummies. They use it frequently in support groups in Canada where I was living when I was diagnosed. I do recommend people find a support group because it can be difficult socially. You can seem high maintenance because you always have to ask what is in the food and you may not be able to go with your friends to their favorite restaurants. Also if friends want to cook something gluten-free for you it is hard because they may miss many of the “hidden” sources of gluten. I would also recommend using a gluten-free probiotic right away.
So there you have it, advice from someone dealing with Celiac first hand. Celiac is often called the great pretender as it can cause a myriad of health issues. If you or someone you love has unexplainable health issues please ask to be tested for Celiac disease.