Hi all, After many trips to the doctor and several misdiagnoses, my daughter Ella was recently diagnosed with Celiac disease. We’ve had a lot of trial and error, but have relied on some of the resources provided by the Beyond Celiac organization. Ella is fundraising for their Step Beyond Celiac 5k of which 100% of proceeds go to the many Celiac disease science initiatives including research grants, their patient registry, trial recruitment and more. If you are interested in making a contribution to Ella’s fundraiser or in learning more about the organization, click link below. Thank you! https://stepbeyondceliac23.funraise.org/fun.../ella-lieblich <https://stepbeyondceliac23.funraise.org/fundraiser/ella-lieblich?fbclid=IwAR1gn00cynjLdgCWCTrdvnGs5QkMzNmQLSoE-vt_jUdDyPTwi1_pqsusvs8> *And if you’re interested in some more information about Celiac disease…* Celiac disease is one of those conditions where, if you don't personally know someone who has it, you may think, "Just don't eat bread or wheat, it can't be that bad." Unfortunately, it's not that simple. Briefly, Celiac disease is a serious autoimmune condition where the immune system attacks the villi of the small intestine, damaging the body's ability to process nutrients from food. This autoimmune reaction is triggered by ingesting gluten and avoiding gluten entirely is the only treatment. This wouldn't be a problem if it was only bread, pasta etc. that had gluten. Gluten is a general name for the proteins found in wheat rye, barley, and triticale – a cross between wheat and rye and helps foods maintain their shape, acting as a glue that holds food together. Gluten can be found in many types of foods, even ones that would not be expected. Some surprising sources of gluten are: Chewing Gum - Some brands use flour to coat pieces of gum to keep them from sticking to the packages. Soy Sauce Mustard - Some prepared mustards contain wheat flour. Ground Spices - Many spice mixes (curry powder, Cajun spice mix etc.) contain gluten as an anti-caking agent. Licorice (And Other Candy)- Some licorice brands and candies include wheat flour as a binding agent. Chips + fries- Potatoes and corn are naturally gluten-free, but potato chip seasoning may contain malt vinegar and wheat starch. Eggs at a restaurant - Omelets and eggs may be made with pancake batter. Flavored ice creams (like cookie dough) and gelatos may contain gluten. All this to say that this autoimmune disease is complicated and needs to be monitored every day for a lifetime. *Things You Might Not Know About Celiac Disease* • Celiac disease is a chronic autoimmune disease, which means that you cannot “grow out” of it. 1 in 100 people worldwide have celiac disease BUT...Approximately 60-70% of Americans with celiac disease are not diagnosed and are needlessly suffering. • Many people with celiac disease are asymptomatic, meaning they don’t experience any external symptoms at all. However, everyone with celiac disease is still at risk for long-term complications. Without a timely diagnosis, celiac disease can lead to intestinal cancers, type 1 diabetes, osteoporosis, thyroid disease, multiple sclerosis, anemia, infertility and miscarriage, epilepsy, and more. • People recently diagnosed with celiac disease are commonly deficient in fiber, iron, calcium, magnesium, zinc, folate, niacin, riboflavin, vitamin B12, and vitamin D. • Celiac disease can develop at any age after people start eating foods or medications that contain gluten. The later the age of celiac disease diagnosis, the greater the chance of developing another autoimmune disorder. • People with a first degree relative with celiac disease have a 1 in 10 chance of developing celiac disease themselves. • More children have celiac disease than Crohn’s, Ulcerative Colitis, and Cystic Fibrosis combined. • Celiac disease can affect every organ in your body. • Lifelong adherence to the gluten-free diet is the only treatment for celiac disease • There is an average delay of 6-10 years for an accurate celiac disease diagnosis. • There are more than 200 symptoms associated with celiac disease. • People with celiac disease have an increased incidence of microscopic colitis and inflammatory bowel disease (Crohn’s disease and ulcerative colitis). • People with celiac disease may have lactose and/or fructose intolerance, both of which can be diagnosed by a hydrogen breath test. • Any food product that is labeled “gluten-free” cannot contain more than 20 parts per million of gluten, which is the safe threshold of gluten consumption for people with celiac disease.
Liz Lieblich
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