Jump to content
  • Sign Up
  • Join Our Community!

    Get help in our celiac / gluten-free forum.

  • Did You Know? Oxalate, Hyperooxaluria, Kidney Stones and Non-Celiac Wheat Sensitivity

    Reviewed and edited by a celiac disease expert.

      Journal of Gluten Sensitivity Summer 2019 Issue


    Caption: Image: CC BY 2.0--Hey Paul Studios

    Celiac.com 08/09/2019 - I have been asked to make you aware 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. 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 the pain they can cause. Currently there is no approved medication for treating hyperoxaluria. The study is a drug investigation for treating hypoxaluria called uriROX-1, and is designed 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 from 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.

    Non-Celiac Wheat Sensitivity

    Did you know that good things for us come out of clinical studies? In 2016 researchers confirmed physical evidence of immune system activation and intestinal damage when wheat is consumed by some individuals without celiac disease and wheat allergy. 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 that they had found specific bio-markers 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, but have nothing wrong with their stomach or bowels. I know the latest statistics says it can take eight years to reach a diagnoses of celiac disease, but how demoralizing, mentally disturbing and failure defeating it must be to go on multiple doctor investigations to be dismissed without an answer. 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 fine. Now some of these people may finally have an answer—non-celiac wheat sensitivity.

    People have been 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. 

    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 now have scientific evidence to explain what hundreds of thousands of patients have rightly asserted, but have too often been dismissed as being fanciful or exaggerated. My advice to you is to keep knocking, searching and yes complaining. If you find an article on the Web that upon reading it sounds just like your experience, print it off and take it to your family physician. Physicians cannot read every journal that comes across their desks, and you somehow have to be their researcher if you want to gain control of your own health.


    User Feedback

    Recommended Comments

    "That is when they were diagnosed as “depressed” menopausal, or in extreme circumstances, neurotic. "

    Great perhaps these terms can finally be removed from women's charts and something more respectful and more accurately descriptive can be used. Although, likely the damage is done, subsequent MD 's read the chart, and also treated her poorly. She may no longer  go to the Dr. or trust Dr.'s. A huge disservice at a cost that was too great to bear.  They successfully turned her into just what they labeled her.

    May the research aid in preventing this from damaging current and future suffers and how they experience bedside manner. Above all may more Dr's get some basics 101's to know when to turn their patient over to the experts to assist them vs undermining their health physically and psychologically.

    Your article brings hope that history will not be repeated for future generations.

     

    Share this comment


    Link to comment
    Share on other sites


    Join the conversation

    You are posting as a guest. If you have an account, sign in now to post with your account.
    Note: Your post will require moderator approval before it will be visible.

    Guest
    Add a comment...

    ×   Pasted as rich text.   Paste as plain text instead

      Only 75 emoji are allowed.

    ×   Your link has been automatically embedded.   Display as a link instead

    ×   Your previous content has been restored.   Clear editor

    ×   You cannot paste images directly. Upload or insert images from URL.


  • About Me

    I am a freelance journalist. I am a retired registered nurse. I write regularly for the Celiac Journal of Gluten Sensitivity which publishes in the United States and British Columbia. I write under Dr. Ron Hoggan out of Victoria. I write for several secular magazines, and also five or six religious magazines, both Protestant and Catholic. Since retiring as a nurse, journalism, my second major in University, has been a life saver for me, both my poetry and articles. My husband and I recently arrived home from an all inclusive holiday to the Mayan Riviera, The Grand Sirenis Mayan. The Assistant Manager was unaware of celiac disease, but he was very interested in learning about it. I had my "Safe" and "Sorry" list translated into Spanish before we left home and several sheets of information laminated. I was so impressed at how they handled my meals I wanted to write about it. My Gluten Free Canada FREE Magazine.

  • Related Articles

    Susan Costen Owens
    Celiac.com 07/17/2015 - This article originally appeared in the Spring 2015 edition of Journal of Gluten Sensitivity.
    Why is a researcher whose field for twenty years has been autism now writing an article about celiac disease and its possible relationship to oxalate? This takes a little explaining.
    My training in graduate school was all about looking into old literature t...

    Monique Attinger
    Celiac.com 11/03/2015 - Many people today are dealing with the need to be gluten-free, whether from allergies, intolerance or celiac disease. Being gluten-free can be the difference between being healthy and having chronic, potentially debilitating, symptoms.
    However, sometimes being gluten-free is not enough.
    The challenge with a gluten-free diet is that many of the most...

    Monique Attinger
    Celiac.com 06/07/2016 - The world of nutrition is currently obsessed with "super foods". Super foods are loosely defined as foods that are extremely high in nutrients – particularly antioxidants and vitamins – and which everyone is heartily advised to add to their diet.
    The problem with this approach is that, while focused firmly on nutrients, we are ignoring anti-nutrients! Ac...

    Jefferson Adams
    Celiac.com 09/12/2016 - Wheat gluten and related proteins can trigger an autoimmune enteropathy, known as celiac disease, in people with genetic susceptibility. However, some people experience a range of gluten reaction symptoms, but without the classic blood or gut markers for celiac disease. The etiology and mechanism of these symptoms are unknown, and so far, researchers have...

  • Forum Discussions

    This is great advice, my mother and grand mother (both Hispanic) always would get the freshest ones and dip in the sauce before rolling. When reheating it varied with tortillas on freshness (and how much of a hurry) but they either heated...
    Hello.  Sorry you're so worried about your daughter.  You're a good mom to search for answers. Hope you're ready to read some articles..... B12 deficiency can cause abdominal pain... https://www.livestrong.com/article/478308-can-a...
    Usually, we dip the corn tortillas in warm, watery, enchilada sauce in a small frying pan before filling and rolling.  It softens them and keeps them moist.  The rest of the sauce is added on top.     The tortillas need to be as fresh as poss...
×
×
  • Create New...