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  • Jackie Rosenblum
    Jackie Rosenblum

    Getting Back To Basics

    Reviewed and edited by a celiac disease expert.

      Journal of Gluten Sensitivity Summer 2005 Issue. NOTE: This article is from a back issue of our popular subscription-only paper newsletter. Some content may be outdated.

    Caption: Image: CC--Naval Surface Warriors

    Celiac.com 11/16/2018 - The best part of being diagnosed with celiac disease is finding out what you or your child has so that you can get back in control and in a position to do something about it.  This article is dedicated to “getting back to basics.”  Many of you will already be familiar with these topics.  Still, every now and then we need to be reminded—for our well being or the well being of our loved ones—we must not take for granted the everyday food items we grab from the shelves or the medications we must take.  We must always remember to read labels, as ingredients in products change constantly.  

    You need to remember that even though you may experience a reaction from a “gluten-free product,” it doesn’t necessarily mean that it was contaminated with gluten.  You might be having a reaction from something you ate within the 48 hours prior to becoming ill; having an allergic reaction; or you may just be sick.  Keep in mind that a resource book that was once full of current information may no longer be accurate.  Check the date it was printed, who compiled the information, and look to see if there is a more current version. 

    Here are some suggestions to help make being gluten-free easier: 

    1. Understand that it is sometimes difficult for family members to acknowledge that your diagnosis of celiac disease is an inherited autoimmune disease.  Parents can have a problem accepting that they may have been the one who gave their child the disease.  Other family members can be afraid that they too have the disease.  Spouses may be angry that your lifestyle must change—or simply fear the unknown. 
    2. Be honest with your friends.  Hopefully, they will want to know more about celiac disease and what kinds of food you can and can’t have. 
    3. Find a dessert that you get compliments on and volunteer to bring it when you visit a friend’s house for dinner, or to share it at a school or social function. 
    4. When dining at a friend’s house, ask what will be served and plan to bring something similar for yourself.  Never count on the host providing a gluten-free meal unless they offer.  If you are not comfortable with bringing something, eat before you go.  You can also choose from the meal what is appropriate.  This applies to children as well.  If they are newly diagnosed and embarrassed, get them a treat before or after the function and let them know you are proud of them for not eating something that contains gluten. 
    5. Knowledge is power.  Learn as much as you can from a qualified and up-to-date source, i.e. National support groups, doctors, and dietitians.  Be wary of Internet chat rooms about celiac disease.  The amount of information is overwhelming and is not always accurate, which can cause more frustration.  There is, however, a lot of useful information, particularly Internet sites with recipes and food preparations. 
    6. Volunteer.  By focusing on other people and their needs, you will, in time, realize how fortunate you are that you have celiac disease and not something worse.

    A version of this article originally appeared in the Winter 2004 edition of the Celiac Disease Foundation Newsletter.  The Celiac Disease Foundation is a national celiac disease support group that is based in Studio City, CA. For more information visit their Web site: www.celiac.org.

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    The article was fine until the last notation; "Realize how fortunate you are that you have celiac disease and not something worse"?  That's ignorance at its highest!

    Years ago little was understood about celiac disease, gluten responses & gluten cross-reactors. Continued exposure led to severe malnutrition which in turn led to endocrine disease.  Severe fatigue to the point that lifting my body out of bed was a major endeavor, double-vision, blurry vision, horrific bone pain, gait ataxia, encephalopathy to name the top neurocognitive issues.  Two weeks after the nystagmus began, I had major surgery.  It was a long recovery form the symptoms. Eating brings on anxiety & I have to eat everyday to live.

    Simply put, your statement is "CRUEL" to the ongoing suffering celiac must endure. Many have:

    • Anemia, usually resulting from iron deficiency
    • Loss of bone density (osteoporosis) or softening of bone (osteomalacia)
    • Itchy, blistery skin rash (dermatitis herpetiformis)
    • Damage to dental enamel
    • Mouth ulcers
    • Headaches and fatigue
    • Nervous system injury, including numbness and tingling in the feet and hands, possible problems with balance, and cognitive impairment
    • Joint pain
    • Reduced functioning of the spleen (hyposplenism)
    • Acid reflux and heartburn

    In children under 2 years old, typical signs and symptoms of celiac disease include:

    • Vomiting
    • Chronic diarrhea
    • Swollen belly
    • Failure to thrive
    • Poor appetite
    • Muscle wasting

    Add to that the advertisements that poke fun & encourage others to taint our foods with gluten.

    Wake up! Celiac disease is HORRIFIC!

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