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      Frequently Asked Questions About Celiac Disease   04/24/2018

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What is Celiac Disease and the Gluten-Free Diet? What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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    WHEN MISTAKES HAPPEN, FOCUS ON COMFORT (HOW CELIACS CAN MORE QUICKLY RECOVER FROM GLUTEN EXPOSURE)


    Wendy Cohan

    Celiac.com 09/25/2008 - Even after identifying yourself as having a wheat or gluten allergy and asking for a specially prepared meal, it is a common mistake to have a server deliver soup with crackers, or the entree with a side of Texas toast.   I get frustrated just thinking about the number of times my salad has arrived with croutons.  However, getting upset, or pointedly reminding the server can ruin the ambiance of the meal, as well as leave a bad impression with your dinner companions. It is helpful to remember that you are in the very small minority of their customers, and simply consider it an honest mistake.  Do not remove the croutons, crackers, cheese, etc. and eat your contaminated food—SEND IT BACK TO THE KITCHEN—politely, please.  State that you cannot eat what they have brought you, and repeat that you are allergic to the offending food.  Use the opportunity to gently remind your server and educate them about gluten.  Hopefully the next time they will be more conscientious.


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    If you are wheat or gluten intolerant, and have the genetic component that leads to celiac disease, there is no going back to gluten.  As your body heals, you may think that you will be able to cheat once in a while, and that your sensitivity to gluten will decrease once you are not getting "too much".  In fact, the opposite seems to be true.  Once the body begins to get rid of its toxic load, heal damaged tissues, and regain health, it becomes more sensitive to gluten.  I see this over and over again in the clients I counsel, and in my cooking class students.  You will know right away if you cheat, or if you are accidentally "glutened".  Your body, fortunately or unfortunately, will tell you.  It is important to learn techniques to sooth your symptoms as much as possible until recovery takes place.

    Symptoms of gluten exposure in a gluten-intolerant person can vary widely, but some commonly reported ones are abdominal discomfort, bloating, pain, swelling (sometimes extreme) and cramping, followed by diarrhea, or loose stools.  For those with Dermatitis Herpetiformis (DH), even very minor exposure can provoke itching and a return of a healed or nearly healed rash.  Others report headaches, or experience a sudden decrease in alertness and clarity of thought.

    Short-term treatment strategies for gluten exposure include taking an over-the-counter anti-histamine (check with your pharmacist for gluten ingredients), drinking nettle leaf tea (a natural anti-histamine), and using a warm castor oil pack over your upper or lower abdomen, wherever the pain and cramping are centered.

    Longer-term strategies include rebuilding your intestinal health through following an anti-inflammatory diet, taking supplements like L-Glutamine, coconut oil, fat-soluble vitamins A, E, D, and K, Calcium, Magnesium, B-Vitamins, Essential Fatty Acids (EFA's), and probiotics.  Dr. Thomas O'Bryan, a nationally recognized speaker on celiac disease and gluten sensitivity, also recommends Carnitine, an amino acid, in the treatment of celiac/gluten intolerance.  L-Carnitine helps in the absorption and transport of essential fatty acids into cells, and also helps to protect nerve membranes from free-radical damage.

    You may have good results with the tummy rescue smoothie recipe below, which I developed in response to a "gluten emergency" of my own.  The healing properties of each ingredient are also listed.  Puree in blender until smooth, and slightly thickened.  It is most soothing when consumed while still warm from the hot tea

    Tummy Rescue Smoothie:

    • 1 cup hot freshly brewed nettle leaf tea (anti-histamine, anti-spasmodic)
    • ¼ cup Santa-Cruz pear juice (flavoring/sweetener - pears are the least allergenic of fruits)
    • ¼ - ½ teaspoon whole fennel seed (reduces gas & bloating)
    • 2 Tablespoons slippery elm powder (healing & soothing to mucous membranes and the gut)
    • 1 Tablespoon flax seed oil (soothing, anti-inflammatory)
    • ¼ - ½ cup rice milk (hypoallergenic, use to thin to desired consistency)

    This smoothie is best consumed in small sips over an hour or so.  Magnesium also helps with pain and relaxes muscle spasms, so taking a little extra magnesium may be of benefit. For severe symptoms, drink the smoothie while reclining in bed, with a warm castor oil pack over the abdomen, covered by a heating pad set on low.  Do not leave the pack in place for more than an hour.

    There is also an enzyme coming on the market that may help reduce some symptoms of gluten exposure, although this product is in no way meant to replace the gluten-free diet.  Use it only for emergencies.


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    Guest CoconutOilGuy

    Posted

    Hello Wendy, yes, long term health-boosting strategies should be at the forefront. Indeed, coconut oil is an anti-inflammatory dietary fat and is renowned for enhancing the immune system. 80% of our immune system is located in the intestinal tract.

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    Lots of Celiacs I know (including me) are violently ill starting about an hour after consuming even small amounts gluten. Sorry if it is TMI, but I have projectile vomiting for 3-4 hours accompanied by severe cramping in my stomach (not intestines) .... and then feel like I have the worst hangover the next day.

     

    Frankly diarrhea, or loose stools would be a welcome change...easily fixed with Imodium.

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    Thank you for the Tummy Rescue Smoothie! I've often wondered if there is a little help/relief when accidental gluten exposure occurs. Thank you! Thank you!

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    I use Aloe drink (2-4 ounces) plus Digestive Enzymes and it has saved my life. I highly recommend keeping these on hand.

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    Thanks for the smoothie idea, it definitely sounds like something worth trying!

     

    And just a note to Jen: It's a bit presumptuous of you to assume that those of us who suffer from severe intestinal pain and D as a result of being glutened somehow have it easier. It is literally the WORST pain I have ever felt, and it is most definitely not 'easily fixed with Imodium.' Just wanted to clear that up.

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    Guest guadalupe

    Posted

    Hello, I sympathize with you gluten symptom sufferers but do be thankful (though it may be difficult for you) that you do get a reaction to gluten to alert you. My daughter has no external symptoms though her biopsy showed her gut to be in a very bad state... there is literally no way of knowing when a mistake has been made and therefore no way of avoiding food with hidden gluten ...

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    The problem is not as simple as obvious croutons in a salad. The problem is when I discover that I ate hidden gluten after the server, manager, or cook has assured me multiple times that my food is gluten-free. I do not get tummy aches that can be cured with a tummy remedy. I get some of the severe symptoms mentioned in the article. My gut is severely damaged, possibly permanently, and the symptoms last for days if not longer. Restaurant owners and managers have to take responsibility for their actions, and this article does not help in that regard.

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    I have found that drinking two or three tall glasses of water right after being glutened helps some too! Then my old friend Mylanta. I'll try that brewed nettle leaf tea should there be a next time (let's hope not!).

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    Guest Michelle

    Posted

    Hi Wendy! I'm glad to see this here... I've also found that the nettle works well for bladder disturbances, often related to gluten exposure.

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    Guest Mary Lou Archambault

    Posted

    I have to say that intestinal pain and diarrhea are not to me considered easier. If this happens to me at a restaurant possibly caused by cross-contamination, the reaction is usually immediate and hopefully there is a restroom handy and empty. When I go for walks even that sometimes brings it on so I therefore have become dependent on Imodium. To me this is not a good thing.

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    Thank you for your words of wisdom, I will immediately run to my local health food store & stock up on smoothie ingredients. I'm less than a year into this diet and still struggling 2-3 time a month.

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    Guest Pamme Jons

    Posted

    Thanks for the info about how you actually seem hypersensitive when you start to heal...that has been the most shocking thing to me....I was functioning for so long as an undiagnosed celiac, and now 2 years vehemently Gluten-Free, I can not believe how debilitated I am when I get glutened? It flattens me for two days!

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    Guest Jennifer

    Posted

    Everyone I know that is gluten intolerant has different reactions. Mine is intestinal, but also mental. That is the hard reaction to heal.

    Thanks for the info.

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    Guest LaDonna

    Posted

    Thank you for the info about the smoothie. I have my list made to get the products to make it. Only thing I will have to check with the Health Food Store if nettle leaf tea will mix with my sinniment med. I take. I cannot take anti-histamine tablets. So I will see. I had a couple of comments to say. One is when my salad arrives with croutons I always feel like if I ask them to take it back...They just go back and take them off in the kitchen. Also you commented on soup you order?? I have always stayed away from soup because it always seems to have gluten in it.

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    Thanks for writing something about how to deal with the mistakes. This is where I have a hard time coping, the fatigue plus physical symptoms really drag me down and it is so hard to get back up, usually several days. I am glad to hear others have this too, it makes it less scary. I sometimes get scared something else is happening... nice to be able to dampen the symptoms. Thanks for the help!

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    Guest Gerald S Jones

    Posted

    Just a short note to Jen. Watch what you wish for. My last gluten exposure gave me diarrhea to the point that I became severely dehydrated, my kidneys shut down and I was hospitalized for 15 days. Imodium didn't faze it.

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    Guest Allison

    Posted

    Thanks for the help, Wendy. In addition to gastro symptoms, I also get a migraine for days. Any ideas?

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    Guest Steven Leitner

    Posted

    Thanks for the article and the interesting comments. I too went on the Gluten Free diet after biopsy etc. I too found that I have become much more sensitive to gluten after being on the diet. I did get rid of my all-body rash, which had been diagnosed for 13 years as Cutaneous T-Cell Lymphoma and improperly treated for such at Yale New Haven Hospital and Columbia Presbyterian Hospital, Cornell in NYC. What a mess. Yes, whenever I eat out I usually get glutened. Do not ever trust restaurants or waiters even when the restaurant has a reputation for having a Gluten Free menu. I now usually bring a small container of fat free yogurt and a banana which I hide while others order food. I eat what I bring and although I miss the goodies at the table I feel well after the meal. That is becoming the most important thing for me. I am old and I realize that Celiac damages our general immune system so we must be vigilant to protect ourselves. Yes, we 'think' we recover from the cramps, diarrhea, malaise in a few days, but the immune system damage, and small intestine damage lasts and lasts. Be vigilant and survive.

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    Hi Wendy - Thank you so much for sharing this information. I'm gluten intolerant but not Celiac and have pretty bad symptoms. I thought I could be glutened on occasion and be alright. Not so much...and now I understand why. It's been about 18 months since my discovery and I'm and still getting adjusted. I've learned so much about what I can do to heal through your article. My appreciation and gratitude.

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    This is the kind of good advice that makes my day! You can't believe how happy I am finding this website with solid information. It's true, it gets worse gluten exposure after a while being on the diet. The main symptom I suffer is 'brain fog' that goes on for about 2 days after the exposure and it's quite severe, it's impossible to read a book or even calculate little things like checking the bill of the restaurant I am never going back to... Thanks again from across the ocean, Flanders (Belgium)

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    Guest P. T. B.

    Posted

    Pears? Following along in the footsteps of the 11, or is it now 12, allele types associated with Celiac (or gluten intolerance), there's another one that treats a chemical found in pear, apple and peach skins, as well as in birch bark and seeds, just as though it were a terrible poison.

     

    That annoying apple peel that lodged in your gum didn't just 'irritate it'. That welt that rose up in the roof of your mouth and your gums is an auto immune reaction to the chemical in the peel.

     

    When that stuff gets to your intestines it continues cause welts.

     

    It is believed this genetic trait served to protect folks against eating small birch trees (6 inches high or less) in the Arctic. They contain high levels of cyanide and a diet high in birch trees can kill humans.

     

    If the peels are cooked, apples and pears and peaches are OK since heat destroys the damaging chemical.

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    Thank you for your information on all of the ups and downs of this disease. I hope these helpful hints can provide some type of comfort to my recently diagnosed infant. If there are more discoveries toward this can you please email me with some type of information. Thank you very much for everything.

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    Tammy Rhodes
    Celiac.com 04/24/2018 - Did you know in 2017 alone, the United States had OVER TENS OF THOUSANDS of people evacuate their homes due to natural disasters such as fires, floods, hurricanes, tornadoes and tsunamis? Most evacuation sites are not equipped to feed your family the safe gluten free foods that are required to stay healthy.  Are you prepared in case of an emergency? Do you have your Gluten Free Emergency Food Bag ready to grab and go?  
    I have already lived through two natural disasters. Neither of which I ever want to experience again, but they taught me a very valuable lesson, which is why I created a Gluten Free Emergency Food Bag (see link below). Here’s my story. If you’ve ever lived in or visited the Los Angeles area, you’re probably familiar with the Santa Ana winds and how bitter sweet they are. Sweet for cleaning the air and leaving the skies a brilliant crystal blue, and bitter for the power outages and potential brush fires that might ensue.  It was one of those bitter nights where the Santa Ana winds were howling, and we had subsequently lost our power. We had to drive over an hour just to find a restaurant so we could eat dinner. I remember vividly seeing the glow of a brush fire on the upper hillside of the San Gabriel Mountains, a good distance from our neighborhood. I really didn’t think much of it, given that it seemed so far from where we lived, and I was hungry! After we ate, we headed back home to a very dark house and called it a night. 
    That’s where the story takes a dangerous turn….about 3:15am. I awoke to the TV blaring loudly, along with the lights shining brightly. Our power was back on! I proceeded to walk throughout the house turning everything off at exactly the same time our neighbor, who was told to evacuate our street, saw me through our window, assuming I knew that our hillside was ablaze with flames. Flames that were shooting 50 feet into the air. I went back to bed and fell fast asleep. The fire department was assured we had left because our house was dark and quiet again. Two hours had passed.  I suddenly awoke to screams coming from a family member yelling, “fire, fire, fire”! Flames were shooting straight up into the sky, just blocks from our house. We lived on a private drive with only one way in and one way out.  The entrance to our street was full of smoke and the fire fighters were doing their best to save our neighbors homes. We literally had enough time to grab our dogs, pile into the car, and speed to safety. As we were coming down our street, fire trucks passed us with sirens blaring, and I wondered if I would ever see my house and our possessions ever again. Where do we go? Who do we turn to? Are shelters a safe option? 
    When our daughter was almost three years old, we left the West Coast and relocated to Northern Illinois. A place where severe weather is a common occurrence. Since the age of two, I noticed that my daughter appeared gaunt, had an incredibly distended belly, along with gas, stomach pain, low weight, slow growth, unusual looking stool, and a dislike for pizza, hotdog buns, crackers, Toast, etc. The phone call from our doctor overwhelmed me.  She was diagnosed with Celiac Disease. I broke down into tears sobbing. What am I going to feed my child? Gluten is everywhere.
    After being scoped at Children's Hospital of Chicago, and my daughters Celiac Disease officially confirmed, I worried about her getting all the nutrients her under nourished body so desperately needed. I already knew she had a peanut allergy from blood tests, but just assumed she would be safe with other nuts. I was so horribly wrong. After feeding her a small bite of a pistachio, which she immediately spit out, nuts would become her enemy. Her anaphylactic reaction came within minutes of taking a bite of that pistachio. She was complaining of horrible stomach cramps when the vomiting set in. She then went limp and starting welting. We called 911.
    Now we never leave home without our Epipens and our gluten free food supplies. We analyze every food label. We are hyper vigilant about cross contamination. We are constantly looking for welts and praying for no stomach pain. We are always prepared and on guard. It's just what we do now. Anything to protect our child, our love...like so many other parents out there have to do every moment of ever day!  
    Then, my second brush with a natural disaster happened, without any notice, leaving us once again scrambling to find a safe place to shelter. It was a warm and muggy summer morning, and my husband was away on a business trip leaving my young daughter and me to enjoy our summer day. Our Severe Weather Alert Radio was going off, again, as I continued getting our daughter ready for gymnastics.  Having gotten used to the (what seemed to be daily) “Severe Thunderstorm warning,” I didn’t pay much attention to it. I continued downstairs with my daughter and our dog, when I caught a glimpse out the window of an incredibly black looking cloud. By the time I got downstairs, I saw the cover to our grill literally shoot straight up into the air. Because we didn’t have a fenced in yard, I quickly ran outside and chased the cover, when subsequently, I saw my neighbor’s lawn furniture blow pass me. I quickly realized I made a big mistake going outside. As I ran back inside, I heard debris hitting the front of our home.  Our dog was the first one to the basement door! As we sat huddled in the dark corner of our basement, I was once again thinking where are we going to go if our house is destroyed. I was not prepared, and I should have been. I should have learned my lesson the first time. Once the storm passed, we quickly realized we were without power and most of our trees were destroyed. We were lucky that our house had minimal damage, but that wasn’t true for most of the area surrounding us.  We were without power for five days. We lost most of our food - our gluten free food.
    That is when I knew we had to be prepared. No more winging it. We couldn’t take a chance like that ever again. We were “lucky” one too many times. We were very fortunate that we did not lose our home to the Los Angeles wildfire, and only had minimal damage from the severe storm which hit our home in Illinois.
      
    In 2017 alone, FEMA (Federal Emergency Management Agency) had 137 natural disasters declared within the United States. According to FEMA, around 50% of the United States population isn’t prepared for a natural disaster. These disasters can happen anywhere, anytime and some without notice. It’s hard enough being a parent, let alone being a parent of a gluten free family member. Now, add a natural disaster on top of that. Are you prepared?
    You can find my Gluten Free Emergency Food Bags and other useful products at www.allergynavigator.com.  

    Jefferson Adams
    Celiac.com 04/23/2018 - A team of researchers recently set out to learn whether celiac disease patients commonly suffer cognitive impairment at the time they are diagnosed, and to compare their cognitive performance with non-celiac subjects with similar chronic symptoms and to a group of healthy control subjects.
    The research team included G Longarini, P Richly, MP Temprano, AF Costa, H Vázquez, ML Moreno, S Niveloni, P López, E Smecuol, R Mazure, A González, E Mauriño, and JC Bai. They are variously associated with the Small Bowel Section, Department of Medicine, Dr. C. Bonorino Udaondo Gastroenterology Hospital; Neurocience Cognitive and Traslational Institute (INECO), Favaloro Fundation, CONICET, Buenos Aires; the Brain Health Center (CESAL), Quilmes, Argentina; the Research Council, MSAL, CABA; and with the Research Institute, School of Medicine, Universidad del Salvador.
    The team enrolled fifty adults with symptoms and indications of celiac disease in a prospective cohort without regard to the final diagnosis.  At baseline, all individuals underwent cognitive functional and psychological evaluation. The team then compared celiac disease patients with subjects without celiac disease, and with healthy controls matched by sex, age, and education.
    Celiac disease patients had similar cognitive performance and anxiety, but no significant differences in depression scores compared with disease controls.
    A total of thirty-three subjects were diagnosed with celiac disease. Compared with the 26 healthy control subjects, the 17 celiac disease subjects, and the 17 disease control subjects, who mostly had irritable bowel syndrome, showed impaired cognitive performance (P=0.02 and P=0.04, respectively), functional impairment (P<0.01), and higher depression (P<0.01). 
    From their data, the team noted that any abnormal cognitive functions they saw in adults with newly diagnosed celiac disease did not seem not to be a result of the disease itself. 
    Their results indicate that cognitive dysfunction in celiac patients could be related to long-term symptoms from chronic disease, in general.
    Source:
    J Clin Gastroenterol. 2018 Mar 1. doi: 10.1097/MCG.0000000000001018.

    Connie Sarros
    Celiac.com 04/21/2018 - Dear Friends and Readers,
    I have been writing articles for Scott Adams since the 2002 Summer Issue of the Scott-Free Press. The Scott-Free Press evolved into the Journal of Gluten Sensitivity. I felt honored when Scott asked me ten years ago to contribute to his quarterly journal and it's been a privilege to write articles for his publication ever since.
    Due to personal health reasons and restrictions, I find that I need to retire. My husband and I can no longer travel the country speaking at conferences and to support groups (which we dearly loved to do) nor can I commit to writing more books, articles, or menus. Consequently, I will no longer be contributing articles to the Journal of Gluten Sensitivity. 
    My following books will still be available at Amazon.com:
    Gluten-free Cooking for Dummies Student's Vegetarian Cookbook for Dummies Wheat-free Gluten-free Dessert Cookbook Wheat-free Gluten-free Reduced Calorie Cookbook Wheat-free Gluten-free Cookbook for Kids and Busy Adults (revised version) My first book was published in 1996. My journey since then has been incredible. I have met so many in the celiac community and I feel blessed to be able to call you friends. Many of you have told me that I helped to change your life – let me assure you that your kind words, your phone calls, your thoughtful notes, and your feedback throughout the years have had a vital impact on my life, too. Thank you for all of your support through these years.