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    Do you have questions about celiac disease or the gluten-free diet?

  • Scott Adams
    Scott Adams

    Celiac Disease Causes/Risk Factors

    Celiac.com 02/08/2007 - While celiac disease can affect anyone, it is more rare in Africans and Asians, and occurs most frequently in whites of Northern European ancestry, and in people with autoimmune disorders, such as:

    Also, celiac disease and the tendency to get celiac disease runs in families. If one member of a family has celiac disease, the odds are that about one in ten of their first-degree relatives will also have it. People may harbor this tendency for years or even decades without showing signs or getting sick. Then, some kind of severe stress, like childbirth, infection, physical injury, or surgery can "activate" celiac disease.

    While the precise mechanism of this activation, and of the intestinal damage is unclear, removal of gluten from the diet usually brings about quick relief of symptoms and promotes intestinal healing in most patients.



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    Down here in Argentina, we need a Government support in order to afford the pricing gap between gluten-free food and rest of meals. Any clue?

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    Thank you for the information, I was surprised this weekend while taking an 8 year old out for breakfast and was told she was a celiac. I have worked with 2 ladies who have it and they explained some of the problems arising from it. I was able to assist this child and answer her questions. One of which how do you know about celiacs? I explained the above to her and she was happy.

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    You seem to be missing the major cause of the disease: Infant formula.

    I was never on infant formula. Neither was my 90-year old great aunt who has celaic. How does it cause celaic???

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    You seem to be missing the major cause of the disease: Infant formula.

    Amidra:

    If infant formula were the major cause, then I believe my entire family would have celiac. But they don't. I have friends who had no formula and they DO have celiac? If I had been able to breastfeed my children, I would have. They had formula and are very healthy.

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    The general public's ignorance of the cause and treatment (dietary restrictions) of celiac disease is a source of continued problems. I have been given gluten-laden food by close relatives who know of my condition. It is as if they do not care or acknowledge the diet required to live with this terrible sensitivity. My son's mother refuses to believe I have celiac, and she is a RN. My son was finally tested and he is positive but she has convinced him that he does not have a problem. She is supposed to be a health care professional so I guess it is understandable that common people have no understanding.

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    The general public's ignorance of the cause and treatment (dietary restrictions) of celiac disease is a source of continued problems. I have been given gluten-laden food by close relatives who know of my condition. It is as if they do not care or acknowledge the diet required to live with this terrible sensitivity. My son's mother refuses to believe I have celiac, and she is a RN. My son was finally tested and he is positive but she has convinced him that he does not have a problem. She is supposed to be a health care professional so I guess it is understandable that common people have no understanding.

    Here is a great article on this topic:

    http://www.celiac.com/articles/22067/1/Dealing-with-Denial-by-Danna-Korn/Page1.html

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  • About Me

    In 1994 I was diagnosed with celiac disease, which led me to create Celiac.com in 1995. I created this site for a single purpose: To help as many people as possible with celiac disease get diagnosed so they can begin to live happy, healthy gluten-free lives. Celiac.com was the first site on the Internet dedicated solely to celiac disease. In 1998 I founded The Gluten-Free Mall, Your Special Diet Superstore!, and I am the co-author of the book Cereal Killers, and founder and publisher of Journal of Gluten Sensitivity.

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    Scott Adams
    Celiac.com 02/08/2007 - There is presently no cure for celiac disease. Celiac patients can vary greatly in their tolerance to gluten. Some patients may not notice any symptoms when they ingest tiny amounts of gluten, for example if something they ingest has been cross-contaminated, while others suffer pronounced symptoms after ingesting even the slightest amount of gluten. Avoiding gluten is crucial
    A life-long diet free of gluten is the standard treatment for celiac disease. To manage the disease and prevent complications, its essential to avoid all foods that contain gluten. That means it is crucial to:
    Avoid all foods made with wheat, rye, or barley. Including types of wheat like durum, farina, graham flour, and semolina. Also, bulgur, kamut, kasha, matzo meal, spelt and triticale. Examples of products that commonly contain these include breads, breading, batter, cereals, cooking and baking mixes, pasta, crackers, cookies, cakes, pies and gravies, among others. Avoid oats, at least during initial treatment stages, as the effects of oats on celiac patients are not fully understood, and contamination with wheat in processing is common. So, its best to eliminate oats at least until symptoms subside and their reintroduction into the diet can be fairly monitored and evaluated. Avoid processed foods that may contain hidden gluten. Wheat is commonly used in many processed foods that one might never suspect. A few examples include: candy bars canned soup canned meat energy bars ketchup ice cream instant coffee lunch meat mustard pastas processed meat sausages Avoid capsules and tablets that contain wheat starch, which is a common used binding agent in their production. Gluten is also commonly found in many vitamins and cosmetics, such as lipstick. Avoid beer (wine, brandy, whiskey and other non-wheat or barley alcohols are okay). Eat a diet rich in fish, fresh meats, rice, corn, soybean, potato, poultry, fruits and vegetables. Avoid milk and other dairy products, as it is common for patients with untreated celiac disease to be lactose intolerant. Successful treatment often means dairy products can be slowly reintroduced into the diet over time. Identify gluten-free foods. Because a gluten-free diet needs to be strictly followed, and because food ingredients may vary from place to place and even over time for a given product, it is important to always read the label. Consider purchasing commercial listings of gluten-free foods and products. For specific advice on adopting, shaping and maintaining the gluten-free diet that is right for you, you may wish to consult a registered dietitian who is experienced in teaching the gluten-free diet. Always read labels, as ingredients often change over time and products that that were once gluten-free may be reformulated and now include gluten in some form. Products that are gluten-free in one country are sometimes not gluten-free in another. Most patients who remove gluten from their diets find that their symptoms improve as inflammation of the small intestine begins to subside, usually within several weeks. Many patients who adopt a gluten-free diet report an improvement within 48 hours.
    Results of a gluten-free diet can be especially dramatic in children with celiac disease. Not only does their diarrhea and abdominal distress usually subside but, frequently, their behavior and growth rate are often markedly improved.
    A reappearance of intestinal villi nearly always follows an improvement in symptoms.
    In younger people, the villi may complete healing and regrowth in several months, while in older people, the process may take as long as two to three years.
    In cases where nutritional deficiencies are severe, celiac patients may require vitamin and mineral supplements to help bring about a healthier vitamin profile: folic acid and B12 for patients with anemia due to folate or B12 deficiency; vitamin K for patients with an abnormal ProTime; calcium and vitamin D supplements for patients with low blood calcium levels or with osteoporosis. For all such cases, individuals should consult their health professional.
    Skin lesions common in patients with dermatitis herpetiformis often improve with adherence to a gluten-free diet.
    For patients with celiac disease, the importance of maintaining a life-long diet free of gluten can hardly be over-stressed. Research indicates that only half of those patients who have had celiac disease for at least 20 years were following a strict gluten-free diet. Up to 30% of those patients showed evidence of bone loss and iron deficiency. These are but a few of the long-term consequences for celiac patients failing to follow a gluten-free diet.
    health writer who lives in San Francisco and is a frequent author of articles for Celiac.com. 

    Scott Adams
    This article appeared in the Spring 2007 edition of Celiac.coms Scott-Free Newsletter.
    Celiac.com 08/29/2007 - The XII International Celiac Disease Symposium, proudly hosted by the Celiac Disease Center at Columbia University, featured presentations from researchers from all over the globe. The last session of the scientific portion of the symposium, entitled “Non-Dietary Therapies”, was full of controversy and fireworks. Talks given by Drs. Khosla, Gray, Paterson, Anderson and Mitea all revealed that potential alternatives to the gluten free diet are now being aggressively pursued. Several groups have even spun off from pharmaceutical companies to raise funds to test these alternatives in patient trials. However, several questions remain. How close are we to a “pill” or “vaccine” to treat or prevent celiac disease? And do we even need, or more importantly, WANT them, given that the diet is safe and effective?
    Any alternative therapy for celiac disease must be at least as safe as the gluten-free diet, which, if done correctly, has NO side-effects. So the bar is raised very high. An alternative must offer great medical benefit to celiac patients without causing any medical harm. It is also unclear how, exactly, these new therapies will be implemented. Can they treat existing celiac disease? Will they prevent those at increased risk for the disease (such as siblings) from having symptoms? Will these medications allow celiac patients to ingest as much gluten as they want, or will they just take away the fear of contamination when eating questionable foods? What follows is a summary of several important points raised by some of these speakers in regard to the research that their center is doing in this area of “alternative therapies for celiac disease.
    Two groups discussed their research on what has commonly become known as “the celiac pill”. The idea behind the “pill” is somewhat similar to the idea of taking a lactase enzyme supplement to digest the milk sugar lactose (if you are lactose intolerant). However, digesting the proteins that trigger the immune reaction in celiac disease is much more complex than digesting the simple sugar found in dairy products. The small fragments of the gluten proteins from wheat, rye and barley, which stimulate the immune system in someone with celiac disease, contain a large quantity of an amino acid called proline. The stomach and pancreatic enzymes in humans have difficulty digesting the fractions where these prolines are located, making the gluten highly resistant to complete digestion. The idea behind the “celiac pill” is to provide enzymes to break down the gluten into smaller fragments which will not be recognized by a celiac patient’s immune system. Therefore, theoretically, gluten would not cause an immune reaction and could be safely eaten.
    Dr. Gary Gray, an adult gastroenterologist working at Stanford University in California, addressed this issue in his presentation “Oral Enzyme Therapy”. Their study looked at 20 biopsy-proven celiacs in remission (without symptoms) who received orange juice with either gluten or gluten pre-treated with a special enzyme (abbreviated PEP, for prolyl endopeptidase). Each patient consumed a low dose of gluten daily, 5 grams, which is equivalent to one slice of bread. The patients completed a daily symptom questionnaire, and had urine and stool tests of to measure intestinal damage. The researchers concluded that pretreatment of gluten with PEP avoided the development of fat or carbohydrate malabsorption in the majority of those patients who, after a 2-week gluten challenge, developed fat or carbohydrate malabsorption. The PEP enzyme needs to be investigated further in larger trials of celiac patients.
    Cristina Mitea, working with Dr. Fritz Koning at Leiden University in The Netherlands, also presented some data using similar technology, entitled “Enzymatic degradation of gluten in a GI-tract model”. This group published in 2006 that the above described PEP enzyme may not work optimally in the celiac patient, since it is not active at low stomach pH. The PEP enzyme may also be broken down by pepsin, a digestive enzyme in the stomach, before it reaches the small bowel where gluten causes the most damage. Given these facts, this group of researchers characterized a prolyl endoprotease enzyme, derived from the fungus Aspergillus niger, abbreviated AN-PEP. The AN-PEP enzyme, according to some publications, has been shown to work at stomach pH while resisting pepsin digestion. In the lab, the AN-PEP was able to degrade intact gluten as well as small fragments of gluten, including those that stimulate the immune system in patients with celiac disease. It also appeared to act within minutes, which is 60 times faster than PEP. This is particularly important, as ingested gluten will leave the stomach to enter the small bowel within 1 to 4 hours after being eaten. These researchers state that this enzyme is very stable, and could be produced at low cost at food-grade quality in an industrial setting. However, it has not yet been tested in human clinical studies.
    In summary, some of these future potential treatments include:
    The development of genetically detoxified grains Oral or intranasal celiac vaccines to induce tolerance Inhibitors to the effects of zonulin on intestinal permeability Detoxification of immunogenic gliadin peptides (or gluten proteolysis) via oral peptidase supplementation Inhibitors of tissue transglutaminase Dr. Michelle Pietzak, “The Gluten Free MD” is an Assistant Professor of Clinical Pediatrics at the University of Southern California Keck School of Medicine. She sees patients at Childrens Hospital Los Angeles and Los Angeles County Women’s and Children’s Hospital. With New Era Productions, she has recently released an audio celiac disease set as well as a 2 disc DVD set about celiac disease and the gluten free diet, available at www.glutenfreemd.com.

    Jennifer Arrington
    I would hate to add up all the hundreds of dollars I have wasted trying to get healthy.  Now, however, I get healthy by focusing on one thing:  making my intestines healthy.  If my intestines are healthy, I can absorb food.  If I can absorb food, my body will be receiving the nutrition it needs to function, and thus I will be healthy.
    Of course, rule number one for all of us is to stay gluten free.  But, focusing on avoidance alone, can get depressing.  Instead, I like to focus on what I can do to strengthen my digestive system.  That way, all the good gluten free food I am consuming can actually benefit my body.  What good is eating healthy if you are unable to absorb the nutrients?  Pouring healthy food into a compromised gut would be as wasteful as pouring dollar bills over an ATM machine and hoping in vain to strengthen your bank account balance.
    Research shows that those of us with celiac disease/gluten intolerance often have decreased absorption despite following a strict gluten free diet.  Scott Adams summarized one of these articles on the celiac.com website back in 2003.  The article by Lee SK, et al. entitled “Duodenal Histology in Patients with Celiac Disease after Treatment with a Gluten-free Diet” implied that even though patients may feel better on a gluten-free diet, there may still be damaged intestinal areas that are incapable of optimal nutrient absorption.  Since specific nutrients are absorbed along specific locations in the small intestine, this can have long-term ramifications.  For instance, the proximal portion of the intestine is the site for absorption of vitamin B6 (pyroxidine).  If that portion is damaged, there will be decreased absorption, and your body will be deficient in B6.  You may then experience a range of neurological symptoms such as nervousness, irritability, and shakiness.  And, as happened in my case, you may see a doctor, only to be told you are having anxiety attacks and be handed a prescription for a mild tranquilizer.  Thankfully, I discovered that a good B6 supplement (Solgar “Magnesium with B6”) was all I needed and threw away the offending prescription, but this serves as an excellent—albeit oversimplified—example as to why we have to focus on improving the health of our intestines.
    Before I go on, I do want to say that the products listed below do not benefit me financially in the least.  Additionally, these are the products that work best for my body.  You may find a different brand works better for you, but as long as our focus is on getting those intestines healthy, we are all heading in the right direction!
    So, read on about what I personally consider the top four intestinal healing supplements…
    The first and best all-round product I have found that truly aids in restoring the intestinal lining is a glutamine supplement put out by a company called Metagenics.  The supplement, called “Glutagenics”, contains glutamine, licorice root, and aloe vera.  While studying for my masters in nutrition at Texas A&M University, we learned that glutamine is a key amino acid that aids in restoring the intestinal lining in patients that are transitioning from being tube-fed to a normal diet.   So, when my own chiropractor suggested this supplement and mentioned it contained glutamine, I purchased it and have been taking it on and off for three years.  
    Glutagenics is available online through various websites that carry the Metagenics brand. The supplement is unfortunately a bit cost prohibitive, but you can shop around for other brands that contain a similar blend, or buy the three active ingredients separately. Unfortunately, this did not work for me (I have an expensive gut), but it may for you.
    The next product is a good omega-3 fatty acid. Omega-3 fatty acids have so many benefits that even if you weren’t working on building up your intestines, they would still be beneficial. During my graduate research, I was fortunate to be part of an ongoing study on the mechanism whereby omega-3 fatty acids reduce the inflammatory response. Obviously, when our intestines are damaged, there is plenty of inflammation. So, including omega-3 fatty acids in our diet is vital.
    Thankfully, omega-3 fatty acids are getting easier and easier to come by. My family eats the high omega-3 brand eggs and the Smart Balance peanut butter and butter spreads. You can also purchase wonderful oil blends by Nordic Naturals. My favorite is the lemon-flavored Omega-3 liquid. The lemon flavor truly masks the fishy taste and even my children swallow the oil with minimal grumbling. Nordic Naturals is quite expensive (around $20.00 for 8 oz) but if you compare the amount of DHA you are getting per serving, it is definitely the most DHA for your dollar!
    Another great healing nutrient is zinc. Zinc is wonderful for wound healing- you’ll see it in many topical creams, but it also helps restore the intestines. Metagenics puts out a great supplement and their products are great for sensitive individuals. I find that 10mg works best for me. I don’t take it every day – too much will give you a bad taste in your mouth. Once I get that bad taste, I know I need to go off it for awhile.
    Finally (for now), find a great probiotic. The one that everyone recommends, by Garden of Life, contains wheat grass, so we have to avoid it. I do extremely well, however, on a product called Lacidophil by Xymogen. My energy levels actually improve on this brand. Xymogen has their own website where you can purchase products directly. Taking a good probiotic restores a healthy balance to your gut flora, which aids in overall health and digestion. I have just recently ordered one from Emerson Ecologics through a natural doctor and it’s supposed to be even better. It has many more strains of the good bacteria so I’m going to try it as soon as it comes in.
    Of the four products listed above, the two that I take daily are the probiotic and omega-3 oil. The other two I take on an ‘as-I-need-it’ basis.
    Unfortunately, our bodies don’t tolerate a lot of extra supplements, so go slowly and only add one at a time. Keep track of how you feel. You may never tolerate the mass quantities that some companies will try to sell you. But, since you are your own best manager, work with yourself slowly and patiently and you will find your health improves over time.
    May God bless you with the wisdom and discernment you need to live a healthy and vibrant life!


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