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Clinical Study opportunity for people with kidney damage caused by Celiac Disease

Yvonne (Vonnie) Mostat, RN

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I have been asked to make you awar3e of a new Clinical Study opportunity for people with kidney damage caused by Celiac Disease. First, have you ever been diagnosed with enteric hyperooxaluria? If you have, you may be eligible for a clinical research study undertaken by Allena Pharmaceuticals. First, with a long name like that you may wonder what it is. It is a condition in which there are high levels of oxalate in which there are high levels of oxalate in the urine. Oxalate is a chemical substance found naturally in foods like spinach, nuts, chocolate and tea. It is also a normal by product of metabolism and is removed from the body by the kidneys as waste in the urine. Enteric hyperoxaluria is caused by an underlying gastrointestinal condition, like Celiac Disease, that leads to absorption of too much oxalate from foods. One of the first signs of hyperoxaluria is a kidney stone, and if you have one of those you sure know about it!

Currently there is no approved medication for treating hyperoxaluria. This study of course is a drug investigation for treating hypoxaluria called uriROX-1 study to learn more about the effects of the investigational drug, ALLN-177 on reducing the levels of oxalate in the urine compared to a placebo. It is not currently approved by the U.S. Food and Drug Administration or another regulatory authority for treating hyperoxaluria. I was not aware that people with celiac disease have a higher incidence of kidney stones but I have seen full grown men on the floor with the pain form a kidney stone. When I was working we had diet sheets to help decrease the incidence of kidney stones, but "just in case" you are a celiac that is troubled with kidney stones you should be aware of this. Thousands of people participate in clinical research globally each year. The Celiac Disease Foundation is proud to be working with Allens to recruit patients for this study! If you are interested in learning more about uriROX-1 study, visit uriroxstudies.com.

Did you know that good things for us come out of clinical studies? In2016 researchers confirmed physical evidence of immune system activation and intestinal damage when wheat is consumed by some individuals without celiac disease and wheat alleargy. Researchers at Columbia University including Dr. Peter Green, a member of Celiac Disease Foundation’s Medical Advisory Board and Director of Columbia University’s Celiac Disease Centre confirmed that wheat exposure in this group is, in fact, triggering a systemic immune reaction and accompanying intestinal cell damage. It is estimate that the impacted population is equal to or even exceeds the number of individuals with celiac disease - (The vast majority of whom remain undiagnosed). Dr. Armin Alaedini, says "There is some ambiguity there, which is why we are referring to It as non-celiac wheat sensitivity for now. Further studies are needed. This is the FIRST TIME (2016 study) that they had found specific biomarkers that explain the crippling impact of wheat exposure in some people who do not have celiac disease. More research is needed. Just think of the people, going from doctor to specialist, scopes to x-rays and then being told that they not only do not have celiac disease "They have nothing wrong with their stomach or bowels". I know the latest statistics says it can take eight years to reach a diagnoses if celiac disease, but how demoralizing, mentally disturbing and "failure defeating it must be to go on multiple doctor investigations to either be dismissed as being fanciful or exaggerated. Wheat is making them sick even though they do not have celiac disease. People are telling them that it is just a trend to eliminate gluten from the diet, and they are suffering with potential long-term damage to both the body and mind. There are millions suffering from this condition; sometimes the patient has not written down all their symptoms,, kept a log or journal, and the concern regarding kidney disease is higher in celiac patients. You may not be aware but at one time the peri-menopausal woman was labelled just that when she went into her family physician with complains of stomach bloating, abdominal pain,,nausea, diarrhea and weight loss. I know this because I read the charts of women who were at "the end of their rope, {That is when they were diagnosed as "depressed", "menopausal" or in extreme circumstances "Neurotic". It was not fair, and only through research are these things being brought to our attention now. For the non-celiac-wheat-sensitivity-is-official web site to onto https://.org.about-the-foundation/featured-news/2016/08/non-celiac-wheat-sensitivity-is-official/ Don’t think I am digging to the bottom of the barrel in telling you this, these research projects usually take two or three years to compile, but the long term impact of living with the disorder, especially if undiagnosed can be mind defeating. This research is now your validation. They have physical evidence to explain "what hundreds of thousands of patients have rightly asserted, but have too often been dismissed as being fanciful or exaggerated’.

Did you know that Sjogren’s Syndrome has a link with Celiac Disease? Some of you reading this are rolling your eyes and saying, "Oh NO, not another thing to check out!!" Signs and symptoms of Sjogren’s syndrome are dry eyes and dry mouth, sensitivity to light, smoke and fumes, difficulty chewing or swallowing, recurrent cavities, sore mouth, dry cough and eye pain. There are more of course, but it is another connective tissue disease and there is a diet and treatment for it. It often accompanies other immune system disorders such as rheumatoid arthritis and lupus., (see more information at www.mayoclinic.org: diseases. Just as with celiac disease, Sjogren’s syndrome is under diagnosed relative to its frequencv.By spreading the word about the association between Sjogren’s syndrome and celiac disease, we can help those with Sjogren’s achieve better health and quality of life.

Did you know that the University of Chicago have an amazing research centre for celiac Disease? I go to their site prior to starting this newsletter and ask, "What is new on celiac research?" They never disappoint. Scientists are rethinking some aspects of celiac disease as study intensifies. Celiac disease is the featured topic in the current issue of a medical journal, with researchers laying out developments in diagnosis, follow-up, new treatments, the microbiome and more. You can also get information through Beyond Celiac Research Opt-in. BC Logo. Prog.

Did you know that SELTAN does not contain gluten, it is gluten! Did you know that brown rice syrup contains gluten, even chutneys and pickles can contain gluten as well as white pepper. I suspected this one for a long time ~ CHEAP chocolate often contains gluten, and drinking chocolate, same thing. Read the baked beans label, some lipsticks contain gluten, and if you are a ‘lip licker’ and very sensitive, there is another check for hidden gluten, and while you are reading about that check some toothpastes, potato crispchips, like the ones you can buy at Costco that are so yummy, coated in flour! Your vitamin supplements and self basting turkeys. Truthfully, you have to read every label, even if you have purchased something last year, who knows if they have changed the content? If your young son or daughter is a celiac warn them about eating a piece of Play Dough. Love pate on gluten free crackers? It is the pate that will get you every time if you don’t read labels. So what if you have to take a magnifying glass with you when shopping and make it a two-some shopping trip, Cheap ice cream, same thing. These are products that you might not think about just like luncheon meats; easy to do but so difficult to spot. Your health will not improve if you are getting glutened every month, and I am as guilty as any of you.

The Celiac Disease Foundation (CDF), the leading national organization improving the quality of life for all people affected by gluten-related disorders. Have united with the Gluten Intolerance Group (GIG) are again posting the message that they are proud to announce a partnership that will improve the health and well-being of the celiac disease and gluten-free communities in order to create the most comprehensive non profit organization

There is a new product on the market. It is called KIND, and consists of breakfast bars, healthy grains bars, healthy grains clusters, peanut butter & dark chocolate KIND minis, Almond Caramel and Seat Sale KIND minis, Almond, peanut butter breakfast bars, Sea Sale and Dark Chocolate minis, Dark chocolate cocoa breakfast bar, almond butter breakfast bar, apple banana kale spinach bars, apply strawberry chia KIND bars. Mango Applie chia KIND bars, almond mocha and dark chocolate KIND bars, almond mind and dark chocolate KIND bars, Cashew Raspberry Chia KIND bars.Honey roassted nur and sea salt KIND bars, Almond caramel and seal salt kIND bars, Maple glazd pecan and sea salt KIND bars, Dark Chocolate Chunk healthy grains bars, pumpkin seeds with sea salt KIND bars, Dark Chocolate Peanut Butter bars, Oat and Honey with toasted healthy grains bars, Almost, sea sale and dark chcolate KIND bars, Druit and Nut KIND bars, Cashew Blueberry and Vanilla KIND bars There is another four pages listing further KIND gluten free bars and you can get the information on line. I have written to them suggestion that when offering something new like nutritional, enjoyable bars they offer discount coupons to celiac enquirers indicating we do not want to purchase all their products until we have tasted them. The cost is too much to waste food! By-the-bye, (an English term meaning "By the way" The KIND bar is made in the United States.

You do know about the LARABAR, which is gluten free. Nestle has DEBUTED ANOTHER GLUTEN-FREE SNACK BAR LINE CALLED "YES". Looks good in the pictures, but again I wrote to them suggesting they offer discount coupons to celiac people or gluten sensitive people. It has only been in the last few years that they are recognizing ‘Gluten Sensitive" as a disease. Before that people were suffering with signs and symptoms of celiac disease but all tests proving negative causing those people to suffer mental distress with their symptoms which did not label them as anything but neurotic. So do get on the bandwagon and write to these manufacturers asking if their health bars are made in a gluten free factory and suggesting they send you a discount coupon to try your first bars. Do you know how many thousands of dollars they have earned and we have spent on quick healthy snack bars and breakfast bars. There is also a GLUTEGUARD Carica Papaya Fruit Enzymes bar by Glutagen, a Celaic-com sponsor. This Gluteguard bar made by Glutagen has been studied (with revierws) by our own Celiac.co

 

 



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