Celiac Disease - Parents of Kids or Babies With Celiac Disease
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Discussions with other parents of kids or babies with celiac disease.

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    Jefferson Adams
    Celiac.com 07/16/2018 - Did weak public oversight leave Arizonans ripe for Theranos’ faulty blood tests scam? Scandal-plagued blood-testing company Theranos deceived Arizona officials and patients by selling unproven, unreliable products that produced faulty medical results, according to a new book by Wall Street Journal reporter, whose in-depth, comprehensive investigation of the company uncovered deceit, abuse, and potential fraud.
    Moreover, Arizona government officials facilitated the deception by providing weak regulatory oversight that essentially left patients as guinea pigs, said the book’s author, investigative reporter John Carreyrou. 
    In the newly released "Bad Blood: Secrets and Lies in a Silicon Valley Startup," Carreyrou documents how Theranos and its upstart founder, Elizabeth Holmes, used overblown marketing claims and questionable sales tactics to push faulty products that resulted in consistently faulty blood tests results. Flawed results included tests for celiac disease and numerous other serious, and potentially life-threatening, conditions.
    According to Carreyrou, Theranos’ lies and deceit made Arizonans into guinea pigs in what amounted to a "big, unauthorized medical experiment.” Even though founder Elizabeth Holmes and Theranos duped numerous people, including seemingly savvy investors, Carreyrou points out that there were public facts available to elected officials back then, like a complete lack of clinical data on the company's testing and no approvals from the Food and Drug Administration for any of its tests.
    SEC recently charged the now disgraced Holmes with what it called a 'years-long fraud.’ The company’s value has plummeted, and it is now nearly worthless, and facing dozens, and possibly hundreds of lawsuits from angry investors. Meantime, Theranos will pay Arizona consumers $4.65 million under a consumer-fraud settlement Arizona Attorney General Mark Brnovich negotiated with the embattled blood-testing company.
    Both investors and Arizona officials, “could have picked up on those things or asked more questions or kicked the tires more," Carreyrou said. Unlike other states, such as New York, Arizona lacks robust laboratory oversight that would likely have prevented Theranos from operating in those places, he added.
    Stay tuned for more new on how the Theranos fraud story plays out.
    Read more at azcentral.com.

    Jefferson Adams
    Celiac.com 07/14/2018 - If you’re looking for a simple, nutritious and exciting alternative to standard spaghetti and tomato sauce, look no further than this delicious version that blends ripe plum tomatoes, garlic, olive oil, basil, and firm sliced ricotta to deliver a tasty, memorable dish.
    Ingredients:
    12 ounces gluten-free spaghetti 5 or 6 ripe plum tomatoes ¼ cup extra virgin olive oil 2 cloves garlic, crushed ¾ teaspoons crushed red pepper ¼ cup chopped fresh basil 2 tablespoons chopped fresh parsley Kosher salt and black pepper ⅓ cup pecorino Romano cheese, grated ½ cup firm ricotta, shaved with peeler Directions:
    Finely chop all but one of the tomatoes; transfer to large bowl with olive oil and ¼ teaspoon salt.
    Cook spaghetti until al dente or desired firmness, and drain, reserving ¼ cup cooking water. 
    Meanwhile, chop remaining tomato, and place in food processor along with garlic, red pepper, and ½ teaspoon salt; puree until smooth. 
    Gently stir mixture into the bowl of chopped tomatoes.
    Add cooked spaghetti, basil and parsley to a large bowl.
    Toss in tomato mixture, adding some reserved pasta water, if needed. 
    Spoon pasta into bowls and top with Romano cheese, as desired.

    Jean Duane
    Celiac.com 07/13/2018 - I went to a friend’s home for dinner.  A few days before, she called and asked me what I could eat.  I asked her what she was planning to make, and she said she was grilling meats with side dishes.  I said, “Great.  Please just grill a piece of chicken for me with salt and pepper, and I’ll be happy to bring a side.” She said, “No need to bring a side.  I’ve got this.” When I arrived, she greeted me and said, “I spent all day cooking tonight’s dinner so you can eat it. Hey would you just check this salad dressing to see if it is OK for you?” I looked at the ingredients and it contained gluten and dairy, both of which I cannot eat.  Then I glanced around the kitchen and saw evidence of wheat cross-contamination, including buns being toasted on the grill, and gluten-containing barbeque sauce spilling on the grill where my “clean” chicken was cooking. She had other guests to tend to, and I couldn’t offer instruction or read the ingredients of everything she used in the meal. 
    At social gatherings, I’ve been challenged too by those who ask if I am really “allergic,” or just eating gluten free as a “fad.” I’ve been told many times by hosts and hostesses that, “a little won’t hurt you,” or “everything in moderation,” or “if it is made with loving hands, it is good for you to eat.”  Of course, all of this is bunk for those with food allergies or celiac disease.  A little bit may kill us, and whether made with loving hands or not, it will certainly make us sick. 
    Those of us with food allergies and/or celiac disease walk a tightrope with friends and relatives. The old rules of etiquette just don’t work anymore.  We don’t want to insult anybody, we don’t want to be isolated, and we also don’t want to risk our health by eating foods that may contain ingredients we cannot tolerate.  So what do we do? 
    Etiquette books advise us to eat what is put in front of us when we are guests in someone’s home. They caution us at all costs not to insult our hostess. Rather, we are instructed to compliment the hostess on her good cooking, flavor combinations, and food choices.  But when foods are prepared in a cross-contaminated environment with ingredients we are allergic to, we cannot follow the old social constructs that do not serve us.  We need to work together to rewrite the rules, so that we can be included in social gatherings without fear of cross-contamination, and without offending anyone.
    Let’s figure out how to surmount these social situations together.  
    Each edition of this column will present a scenario, and together, we’ll determine appropriate, polite, and most importantly, safe ways to navigate this tricky gluten-free/food allergies lifestyle in a graceful way.  If someone disagrees with our new behavior patterns, we can refer them to this column and say, “Here are the new rules for those of us with food allergies or celiac disease.”  When we are guests in someone’s home, we can give them links to this column so they understand the plight we are faced with, bite after bite. Perhaps this will help those of us living with us to understand, be more compassionate, and accepting of our adaptations to keep ourselves safe. 
    This column will present a scenario such as the one above, and ask that you comment on how you would navigate it. Let’s talk about it. Let’s share ideas.  Using the example above, here’s the scenario for this issue:
    What would you do?
    Your kind-hearted friend invites you to dinner and insists on cooking for you.  You arrive and the first thing she says is, “I’ve spent all day making this for you. Oh, I bought this salad dressing for you, but you might want to read the ingredients first.”  You do, and it contains malt vinegar.  You look around the kitchen and notice evidence of cross-contamination in the rest of the meal.  What do you do? 
    Please comment below and feel free to share the tricky scenarios that you’ve encountered too.  Let’s discuss how to surmount these social situations.  What would you do?

    Jefferson Adams
    Celiac.com 07/12/2018 - Previous research has shown that the oral administration of Bifidobacterium infantis Natren Life Start super strain (NLS-SS) reduces of gastro-intestinal symptoms in untreated celiac disease patients. The reduction of symptoms was not connected with changes in intestinal permeability or serum levels of cytokines, chemokines, or growth factors. Therefore, researchers suspected that the reduction of symptoms might be related to the modulation of innate immunity.
    To test that hypothesis, a team of researchers set out to assess the potential mechanisms of a probiotic B.infantis Natren Life Start super strain on the mucosal expression of innate immune markers in adult patients with active untreated celiac disease compared with those treated with B. infantis 6 weeks and after 1 year of gluten-free diet.
    The research team included Maria I. Pinto-Sanchez, MD, Edgardo C. Smecuol, MD, Maria P. Temprano,RD, Emilia Sugai, BSBC, Andrea Gonzalez, RD, PhD, Maria L. Moreno,MD, Xianxi Huang, MD, PhD, Premysl Bercik, MD, Ana Cabanne, MD, Horacio Vazquez, MD, Sonia Niveloni, MD, Roberto Mazure, MD, Eduardo Mauriño, MD, Elena F. Verdú, MD, PhD, and Julio C. Bai, MD. They are affiliated with the Medicine Department, Farcombe Family Digestive Health Research Institute, McMaster University, Hamilton, ON, Canada; the Small Intestinal Section, Department of Medicine and the Department of Alimentation at Dr. C. Bonorino Udaondo, Gastroenterology Hospital and Research Institute at the Universidad del Salvador in Buenos Aires, Argentina.
    The team determined the numbers of macrophages and Paneth cells, along with the expression of a-defensin-5 expression via immunohistochemistry in duodenal biopsies.
    Their results showed that a gluten-free diet lowers duodenal macrophage counts in celiac disease patients more effectively than B. infantis, while B. infantis lowers Paneth cell counts and reduces expression of a-defensin-5.
    This study documents the differential innate immune effects of treatment with B. infantis compared with 1 year of gluten-free diet. The team calls for further study to better understand the synergistic effects of gluten-free diet and B. infantis supplementation in celiac disease.
    Source:
    J Clin Gastroenterol

    Jefferson Adams
    Celiac.com 07/11/2018 - For people with celiac disease, finding decent gluten-free bread is like searching gold. Many have given up on bread entirely and others begrudgingly relate themselves to the ignominious frozen aisle at their supermarket and content themselves with one of the many dry, shriveled, flavorless loaves that proudly tout the gluten-free label. 
    For these people, the idea of freshly baked bread is a distant, if comforting, memory. The idea of going to Paris and marching into a boulangerie and walking out with a warm, tasty, gluten-free baguette that was freshly baked on the premises that morning, is like a dream. Now, in some Parisian bakeries, that dream is becoming a reality. And the tear of joy from the thankful gluten-free masses are sure to follow.
    These days, a single sign on the awning speaks to hungry customers who peruse the tarts and chou buns, and the loaves that fill the cooling on racks behind a glass pane at Chambelland boulangerie and café in Paris’ 11th arrondissement. The sign lettered in French translates: “artisan baker; flour producer; naturally gluten free.” That’s right. Naturally gluten-free. At a bakery. In Paris. 
    Only the flat, focaccia-style loaves, and the absence of baguettes, tells customers that this bakery is something different. Chambelland opened its doors in 2014 and continues to do a brisk business in delicious, freshly baked gluten-free breads and other goods.
    The boulangerie is the work of Narhaniel Doboin and his business partner, Thomas Teffri-Chambelland. They use flour made of grains including rice, buckwheat and sorghum to make delicious gluten-free baked goods. Doboin says that customers queued in the rain on the first day, hardly believing their eyes, some began to cry. 
    For gluten-free Parisians, there was a time before Chambelland, and the time after. If you find yourself in Paris, be sure to search them out for what is sure to be a gluten-free delight.
    Or maybe book your ticket now.
    Read more at: Independent.co.uk