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    Jennifer Nelson, M.S., R.D. and Katherine Zeratsky, R.D.

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  • Nutrition-wise blog

  • May 23, 2012

    Celiac disease: Building awareness and support

    By Jennifer Nelson, M.S., R.D. and Katherine Zeratsky, R.D.

18 comments posted

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Approximately 1 in 133 Americans has celiac disease. Yet 95 percent of those with the disease are undiagnosed or misdiagnosed. Efforts are underway to increase public awareness about celiac disease, such as designating May as Celiac Awareness month.

Celiac disease damages the small intestine, causing pain and diarrhea, and interferes with absorption of nutrients. This leads to nutrition-related conditions including weight loss, and nutrient deficiencies that deprive your brain, nervous system, bones, liver and other organs of vital nourishment. There is no cure — the only treatment is avoiding gluten.

Joseph Murray, M.D., a Mayo Clinic gastroenterologist who specializes in diagnosis and treatment of celiac disease, has looked at incidence of the disease and mortality between the 1950s and now.

According to his study, published in the journal "Gastroenterology," the incidence of celiac disease is 4.5 times higher today. The study also found that individuals who weren't aware that they had celiac disease were nearly four times more likely than people without celiac disease to have died during the 45 years of follow-up.

Awareness is important for people with celiac disease and for their families. Awareness is also important for health care professionals. We must accurately diagnose and provide comprehensive education to prevent and manage the nutritional consequences this disease can wreak if gluten is not strictly avoided.

Awareness is critical for everyone involved in our food supply to recognize the need and to provide nutritious, gluten-free products. And regulatory assistance is needed from our government to ensure that labels are accurate and ingredients are truly gluten-free. Unfortunately people with celiac disease and their families have been waiting since 2007 for the Food and Drug Administration to finalize standards for gluten-free foods.

If you're reading this, consider yourself aware. However, awareness isn't enough.

Here are three simple steps you can take to fight celiac disease and support the gluten-free movement:

  • If you suspect you have celiac disease, do not start a gluten-free diet without your physician's approval. This can complicate the diagnosis. Spread the word about this too.
  • If you know someone with celiac disease, ask them about their challenges. Better yet — ask what you can do to help. Offer to cook a gluten-free meal.
  • Ask your local grocery store and favorite restaurants what gluten-free foods they have. Demand can increase supply.

What are you going to do?

- Jennifer

18 comments posted

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  • October 24, 2012 6:55 p.m.

    ust read some of the blgs and I need what Barb needs a place to check out a given product to confirm if not marked gluetin free

    - Bob

  • October 24, 2012 3:39 p.m.

    My now-deceased physician medical-author of Diseases of the Gallbladder & Biliary System husband diagnosed me as having MS but I think it is affiliated with Celiac Disease. I have all the symptoms plus I have blind spells (either eye at different times) and sudden weakness attacks. However, I use the "cold therapy" method discovered by Dr. Wallace W. Tourtellotte (UCLA) who told me to fight the symptoms now and worry about a cure later.

    - Connie

  • October 3, 2012 11:21 a.m.

    I was diagnosed in May 2012. There are 6 of us in my family now diagnosed with Celiac Disease. I now feel great most of the time. But at least one day a week I get hit hard and am down for 24 hours. It seems that even though I consume no gluten, gluten free kitchen, etc., my body misreads some things I eat as gluten and make me sick. I no longer eat rice or quinoa. My diet is only fruit, vegies and chicken, tuna, and beef. I have done extensive reading about Celiac Disease. There are a couple of things I want to learn. One, where can I find a doctor in the Pacific Northwest who knows anything new and progressive about Celiac Disease? My doctor who diagnosed me did so with her laptop open and reading an online info site. Two, what can I do to further contribute to my healing of my intestines? My symptoms are brain fog, fatigue, intestinal cramping, nausea, diarrhea, joint pain, edema. These are pretty consistent when ever I get a reaction or a cross contamination. Thanks for your guidance. This is crazyness!

    - Barb

  • October 2, 2012 10:08 a.m.

    This was very general information that most celiacs (or gluten intolerant) are already aware of. I would like to know where I can obtian specifics such as is there a way to mitigate long term symptoms from accidental exposures that we are all the victims of due to the general lack o funderstanding.

    - Christi

  • September 7, 2012 4:14 p.m.

    What about coffee? Surely it is gluten-free,no?

    - Gale

  • September 4, 2012 12:31 p.m.

    humans are not designed to eat wheat (gluten), just so happens we do and have been able to get away with it - but 2 things - 1 wheat has been hybridized and designed to grow - unfortunately also harder to digest without a very low pH in your stomach acid (i.e. 1.5) Now # 2 is this salt thing - reduce salt reduce reduce...nonsense promoted on this website. Fact: without salt you will be unable to have a low pH of stomach acid leading to 2.5 or so where you will not have the ability to digest proteins - meaning you can't break them into amino acids. Partially digest protein then gets absorbed - ie gluten - your body's defense system kicks in to combat the protein - long story short you now become allergic to gluten - which then if you keep eating it your villi will become inflammed and suddenly you will not be able to absorb other essential nutrients (meaning absolutely necessary for life); then deficiency diseases of all kind will follow. If you don't believe I would seriously get a good book which will explain the digestive system - most people do not understand it at all

    - Bob

  • August 13, 2012 2:14 p.m.

    My daughter is 19 yrs.old with symptoms of chronic fatigue, depression difficulty losing weight & joint pain. Her labs showed that she has a high RBC count with a low iron level & a ferriton level of 16. She is also is presenting with elevated lymphocytes but a low WBC count. Her T4 is a little low but her TSH level is within normal range. We've been going thru this for years and haven't found any answers. Help! Thank you.

    - Becky

  • June 22, 2012 8:51 p.m.

    Nancy - Yes, young children may be gluten intolerant. My 3-year-old niece is severely gluten and lactose intolerant. She had almost constant diarrhea, gas, and nausea and was very thin until all lactose and gluten were removed from her diet last year. Now she's thriving and up to normal weight for her age. If your grandson only likes pizza, make sure the crust is gluten free(GF). We use baked polenta for pizza crust -Delicious! (Due to lactose intolerance, no cheese, either). Check Mayo's list of what food is allowed on a GF diet and try them with your grandson. If he likes pizza, make it with GF crust and sauce and pile on the protein and veggies so he gets his healthy food in a form he likes to eat, then go from there: "Here Johnny, just try 1 bite of this ___, remember you had it on the pizza last night..." Try veggies and fruits raw as finger food with a dip of GF salad dressing, yogurt, peanut butter or even GF pizza sauce, since he likes that. Or try giving things funky names -remember "Ants on a log"? (celery filled with peanut butter with raisins on top) Eating something weird often appeals to kids. And set a good example - kids often want what adults eat. Also make sure he knows what's SAFE to eat. He knows food makes Mom ill and he's been told some will make him ill, so he may be afraid to try new foods. A local library may have kids books and cookbooks on GF diets/celiac disease (or can get them on interlibrary loan) to help him understan

    - Dinah

  • June 20, 2012 1:01 p.m.

    i just found out i have celiac disease and am worried about having to fix my food different from my family. any suggestions?

    - debbie

  • June 18, 2012 4:07 p.m.

    Hi Adam - thank you for your comment. Often times people assume that the only whole grains are from wheat, rye and barley (those that must be avoided when you have Celiac disease). There are other whole grains that people with Celiac disease CAN eat: brown or wild rice, quinoa, amaranth, pure buckwheat, flax, whole corn, millet, sorghum, and teff. It's the fiber in whole grains (and in veggies and fruit) that moderate the spikes in insulin, lower dietary cholesterol absorption from the GI tract, and provide a natural source of vitamins/minerals and antioxidants - that are all proven to be heart protective. When you choose gluten-free grains, choose the ones that are whole and your health will benefit.

    - - your blog host Jennifer

  • June 17, 2012 9:29 a.m.

    This is a cookbook I like..."The Gluten Free Kitchen" by Robin Ryberg. Most of the recipes are made with potato starch and cornstarch. You don't have to buy many different flours

    - Bev

  • June 17, 2012 4:16 a.m.

    I havejust foundout i am gluten intoerlant and i also Have IBS. can someone recomend a goodbook on what u can and carn't eat, i am finding this all very hard to deal with. cheers Helen, oh andor a good recepie book also

    - Helen

  • June 12, 2012 5:29 p.m.

    How can I consider the Mayo Clinic to be a good source of material for dealing with celiac disease when on another part of the website it boasts how whole grains are good for you. Stating that it has been linked with lowering heart conditions. That is a load of bull. Gluten has been linked to increasing heart conditions. Why do you suppose celiac disease is more common??? Because sites like this and propaganda in the food industry promote a heavy grain diet. Stop acting like grains are good for the us. Please! Just for the sake of humanity. People believe a site like this, which looks somewhat credible.

    - Adam

  • June 3, 2012 11:04 a.m.

    My daughter-inlaw has Celilac and has had my 6 yr. old grandson tested and the doctor said he is "pre disposed" but he does not have the disease...however my DIL insist he eat only gluten free....he eats almost nothing...and weights 40 lbs. his ribs show through his body. My son is fighting her on this constantly. Does anyone know a child that young who has celiac? Is there anything he can take to get him to eat regular food? He eats pizza, drinks apple juice and it is a struggle to get him to try anything else. I feel so helpless.

    - Nancy

  • May 30, 2012 3:40 p.m.

    You don't have to start worrying about "expensive gluten-free foods". Lots of everyday food is gluten free: potatoes, rice, oats, muesli, fruit, meat, dairy products (just be careful with some ice-cream), vegetables, etc. Pasta and bread are the main culprits, and increasingly gluten-free varieties of these are to be found in many supermarkets. So: don't worry about it too much!

    - Maria

  • May 30, 2012 2:27 p.m.

    Thank you for this article. Our niece was diagnosed recently and we are trying to learn as much as possible about Celiac disease. With our niece being very open about her diagnosis, two other non-blood relatives were tested and they also have Celiacs. We are finding out how expensive gluten-free foods can be and our hope is with more awareness and demand for these foods, the price will become more reasonable and supply more plentiful. Appreciate the suggestion to talk to your local stores/ restaurants.

    - Toni

  • May 28, 2012 12:18 a.m.

    Thanks for the awareness, Celiac disease Is the most common disease in North America and it is a disorder of small intestine, may accour in all ages of people.

    - Jessica

  • May 26, 2012 10:40 a.m.

    Luckily with the whole gluten free craze has ensured that people with actual problems like celiac disease should have much more options open to them at their local grocery store.

    - Alexandria

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