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      Frequently Asked Questions About Celiac Disease   04/07/2018

      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 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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celiac3270

Living Without--newest Issue

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I finally got around to slowly perusing the most recent issue of Living Without and I was so disappointed when I go to page 58! That page, entitled "Read it" gave little reviews on five books, one of which was The Gluten-Free Bible. I was so disappointed that they, too, gave it a glowing review. I believe I would be allowed to post that little bit (right?), but if it's illegal or something, let me know and I'll take it down:

The Gluten-free Bible (Owl Books) is a welcome resource for those living with celiac disease. Author Jax Peters Lowell does a superb job revising and updating her classic 1995 guide, Against the Grain. The new tome is packed with information presented creatively. Lowell's positive slant and witty prose guarantee a fun read. This is an important book for both the newly diagnosed and the veterans who wish to broaden their knowledge of living well, gluten free.

Oh wow. Obviously, whoever wrote this didn't know enough about celiac to spot all the inaccuracies, in product status, contamination issues, etc. I'm not even going to start elaborating--I've done that in past posts...I was just disappointed that they, too, overlooked such issues. This book is NOT important for the newly diagnosed, because it presents them with wrong information that they believe just because it's in a book that all these people are praising. This book is NOT for veterans to learn more--because in my short two years of personal experience, multiple forums, discussions with experienced celiacs, reading of reliable celiac authors (such as Danna Korn), celiac conferences, etc. I feel that I have a better handle on many of the topics than she. What is so distressing about this is that the voices of the "veterans" and the common celiacs are not heard--the people who read the books don't get their word in--but the less knowledgeable praise the book in magazine, important people in celiac organizations praise a book they probably have not read in full, and even DOCTORS give it their stamp of approval-- which they aren't really qualified to give, being that their expertise is medical, not lifestyle-related. What does a doctor know (or care) about the status of Cheetos or Butterball turkies. And many doctors don't even know the logistics of cross-contamination.

I am open to the opinions of others on this and would be happy to hear what you think of it. Even if you do not subscribe to the magazine, I've provided you with the text... and if Jax reads this and gets angry as she did on someone's post on Delphi and on the Delphites negatively reviewing her review on Amazon, then I say to her that I have a right to my opinion, to express my opinion and share it, to protect others from the inaccuracies in the book, and don't have a hissy fit and post to the Listserv again because you're upset that some celiacs don't like your book--I feel that Danna Korn is the best celiac author and I like the way she writes, yet I have heard a few celiacs (a tiny minority, but a few, nonethelss) criticize her books or style of writing. You cannot write a universally accepted book, but not all books are created equally acceptable.

My rant is over.

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Has everyone gotten their new issue of Living Without... I've been hearing about it here and I didn't get mine.

I guess i better get in touch with the publisher.

Susan

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celiac3270,

Maybe it's time for you to write a book. From your perspective for other teenagers. As a parent of toddlers, I am not quite sure how to handle the teenage years on a gluten free diet. I am happy with the books I have bought, i.e. Danna Korn, but I have found your interaction on the board more helpful than the short stack of books I have on hand. How should kids deal with a "cookie flinger"?

Laura

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oh no. :( i just bought this book and was pretty excited about it. i haven't gotten very far at all into it yet, so maybe that is why i haven't spotted the inaccuracies (that, or my own ignorance).

what books has Danna Korn written? i'd like to check into those if they are better.

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I hear you, celiac3270. That's definitely detrimental to the newbies to celiac. I'm not as concerned about experienced celiacs reading it because they would know the inaccuracies in it.

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  celiac3270,

Maybe it's time for you to write a book. From your perspective for other teenagers. As a parent of toddlers, I am not quite sure how to handle the teenage years on a gluten free diet. I am happy with the books I have bought, i.e. Danna Korn, but I have found your interaction on the board more helpful than the short stack of books I have on hand. How should kids deal with a "cookie flinger"?

Laura

Excellent idea :lol: . I MIGHT just do that. Not a complete reference book for every aspect of it--that would be an overwhelming task--but a Celiac for teens/kids thing. Thanks for the suggestion--I had been pondering that for awhile and your suggestion just might be the kick in the rear I need.

Laurel-- Danna Korn's most recent and thorough book is entitled "Wheat-Free, Worry Free." I own it and it is an excellent, thorough, well written book. Of all the celiac books available now I would recommend that one hands down. She also said she is working on another book.

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I have 3 books..The Gluten Free Bible, Dangerous Grains, and Wheat Free, Worry Free. I don't think The Gluten Free Bible has harmed me in any way. However I don't read to find out what foods to eat, ingredients to watch out for etc...I already got all that info. from this site. Therefore I wouldn't consider it my gluten "bible" just another fun book to read. I'm more interested in the other aspects of the disease... history, testing, experiences...etc. If there are inaccuracies in that book then shame on her! However, I'm a newbie who was not harmed in the reading of that book. :)

Oh yeah...I also have about 4 gluten-free recipe books...I wouldn't trust anything in a book as far as food/ingredients go unless I've already done the research and know it to be true.

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Well celiac3270, I'm your first reserved copy. See if you can use Kaiti's liquid cleaner on the pizza analogy to her friends for your book. I just made the cheesecake recipe of yours today... AWESOME!!!

Laura

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Yes--that is an excellent tool to explain it to friends--I've used that analogy ALL the time to explain why one crumb can do so much damage. Thank you for your support :P ...I'll let you know how it goes.

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celiac3270,

Maybe it's time for you to write a book.  From your perspective for other teenagers.  As a parent of toddlers, I am not quite sure how to handle the teenage years on a gluten free diet.  I am happy with the books I have bought, i.e. Danna Korn, but I have found your interaction on the board more helpful than the short stack of books I have on hand.  How should kids deal with a "cookie flinger"? 

Laura

<{POST_SNAPBACK}>

:D:D:D:D

Hey celiac3270,

I second Laura's opinions. I would buy your book in a heartbeat!!! When I first joined you answered a lot of my posts, and I thought you were a very knowledgable ADULT. I was shocked when I learned your age. Not only that, I have seen the way you interact with the other teens on the teen forum, your very good. You helped my daughter a lot and she is preenteen. So when can we expect your first book? :)

Bette

ps I have not read the book in question. I truly valued everybodies opinions here on this message board and clearly, it was not held in high regard so I did not bother buying it.

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:D  :D  :D  :D

Hey celiac3270,

I thought you were a very knowledgable ADULT. I was shocked when I learned your age.

<{POST_SNAPBACK}>

I have to admit I was pretty amazed myself...I thought he was an adult at first too. I read alot of his posts and was VERY surprised to find out he was 14!!! :huh:

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Yes--that is an excellent tool to explain it to friends--I've used that analogy ALL the time to explain why one crumb can do so much damage.  Thank you for your support :P ...I'll let you know how it goes.

<{POST_SNAPBACK}>

I know that even a small amount of gluten in your food is dangerous. I would like to hear from you (since your the knowledgable 14 year old Celiac here), is it really, really true that one crumb can do so much danger, because if thats true, Im in trouble. This might explain why I always feel lousy. I eat out alot and take risks, thinking, So? What if the french fries werent made in a separate frier, or that they made me a hamburger on a grill that had Gluten???? :unsure:

Have you had any personal experiences, or have research about the potential damage one crumb would be?????? If so, please share. Id love to learn more (as I am also a 4th grade teacher)

What analogy were you referring too?

Thanx!!!!! :D

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The analogy was about what I had done a few months back:

My friends brought a pizza over and wanted to scrape the cheese off of the bread so I could have it and when I told them that I could not and why they didn't seem to get it. So I got out some cleaner and poured kitchen cleaner all over the pizza then scraped the cleaner off as best as I could and handed it to them to eat. And you know believe it or not they would not eat it! :lol: They seemed to get the visual very well and have not done anything like that since.

Those kind of analogies work well-also when people ask if even the smallest amounts of gluten cause harm then you can compare it to rat poison and see if they would have a little of that. Then you say the rat poison is to them what gluten is to you.

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So when can we expect your first book? :)

<{POST_SNAPBACK}>

lol...not for a long time...if it even ends up happening, it takes about a year after I have a first draft to publish...so who knows? :blink:

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Oh yes! A book! Definitely, celiac3270 needs to write a book :) I mean, he already has a fan club.....

My son's analogy is a carpet -- most people have carpeting in their GI tract; celiacs have it too, but when they eat gluten it's like burning a spot bare with a cigarette (or as my son explains it, sparks from the fireplace, since everyone here has one). Eventually you don't have anything left, and in the meantime, your carpet is not quite "right".

Not too bad for a 10 year old

Joanna

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I saw that review in my new issue and was disappointed too. Looks like someone needs to write a letter to the magazine... :)

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I go in waves in buying magazines like Good Housekeeping, Ladies Home Journal, etc. and usually bring them home and throw them away as nothing in there remotely resembles my life (even before celiac). Anyway, my husband & I are in store & I buy Living Without - all the way home my husband grumbles over price of LW and tells me I buy too many magazines, etc. and get nothing out of them, etc. why waste money, etc.

Get home, he takes a look at LW and immediately he is reading it and then I try to take it from him, he's like "no, this is a good magazine; let me read it first, then you can have it." I mention to him that he grumbled about buying it the whole time in the checkout, now all of a sudden it's his magazine. His answer "I didn't realize you bought something that was really good to read."

So now we eagerly await each issue

I guess the Autumn issue is out now?

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celiac3270 - in all seriousness you should think about writing a book (it's not like you have anything else to do, right?) You have a great writing style; I'll bet you could get published! I think if you focused on teens with celiac disease you would have a unique and very marketable book. As an alternative, have you thought about writing an article for one of the gluten free magazines focusing on strategies for teens in coping with celiac disease?

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celiac3270 - in all seriousness you should think about writing a book (it's not like you have anything else to do, right?)  You have a great writing style; I'll bet you could get published!  I think if you focused on teens with celiac disease you would have a unique and very marketable book.  As an alternative, have you thought about writing an article for one of the gluten free magazines focusing on strategies for teens in coping with celiac disease?

<{POST_SNAPBACK}>

You know, thats a good idea.. he is like the smartest person on the board - and if it helps, I would buy the book :D .. ooooh and you could donate some of the money that you get out of the book towards celiac research or something! Sorry.. I get carried away sometimes. :rolleyes:

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I hate to be the da (dumb a**) in the room but I have missed the point! Why is this book causing such reactions? How is the author wrong? I have not read this book or any book by this author. However I would like to understand why this person has not received celiac3270's respect.

Hez

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Thank you! Now I understand.

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    admin
    WHAT IS CELIAC DISEASE?
    Celiac disease is an autoimmune condition that affects around 1% of the population. People with celiac disease suffer an autoimmune reaction when they consume wheat, rye or barley. The immune reaction is triggered by certain proteins in the wheat, rye, or barley, and, left untreated, causes damage to the small, finger-like structures, called villi, that line the gut. The damage occurs as shortening and villous flattening in the lamina propria and crypt regions of the intestines. The damage to these villi then leads to numerous other issues that commonly plague people with untreated celiac disease, including poor nutritional uptake, fatigue, and myriad other problems.
    Celiac disease mostly affects people of Northern European descent, but recent studies show that it also affects large numbers of people in Italy, China, Iran, India, and numerous other places thought to have few or no cases.
    Celiac disease is most often uncovered because people experience symptoms that lead them to get tests for antibodies to gluten. If these tests are positive, then the people usually get biopsy confirmation of their celiac disease. Once they adopt a gluten-free diet, they usually see gut healing, and major improvements in their symptoms. 
    CLASSIC CELIAC DISEASE SYMPTOMS
    Symptoms of celiac disease can range from the classic features, such as diarrhea, upset stomach, bloating, gas, weight loss, and malnutrition, among others.
    LESS OBVIOUS SYMPTOMS
    Celiac disease can often less obvious symptoms, such fatigue, vitamin and nutrient deficiencies, anemia, to name a few. Often, these symptoms are regarded as less obvious because they are not gastrointestinal in nature. You got that right, it is not uncommon for people with celiac disease to have few or no gastrointestinal symptoms. That makes spotting and connecting these seemingly unrelated and unclear celiac symptoms so important.
    NO SYMPTOMS
    Currently, most people diagnosed with celiac disease do not show symptoms, but are diagnosed on the basis of referral for elevated risk factors. 

    CELIAC DISEASE VS. GLUTEN INTOLERANCE
    Gluten intolerance is a generic term for people who have some sort of sensitivity to gluten. These people may or may not have celiac disease. Researchers generally agree that there is a condition called non-celiac gluten sensitivity. That term has largely replaced the term gluten-intolerance. What’s the difference between celiac disease and non-celiac gluten-sensitivity? 
    CELIAC DISEASE VS. NON-CELIAC GLUTEN SENSITIVITY (NCGS)
    Gluten triggers symptoms and immune reactions in people with celiac disease. Gluten can also trigger symptoms in some people with NCGS, but the similarities largely end there.

    There are four main differences between celiac disease and non-celiac gluten sensitivity:
    No Hereditary Link in NCGS
    Researchers know for certain that genetic heredity plays a major role in celiac disease. If a first-degree relative has celiac disease, then you have a statistically higher risk of carrying genetic markers DQ2 and/or DQ8, and of developing celiac disease yourself. NCGS is not known to be hereditary. Some research has shown certain genetic associations, such as some NCGS patients, but there is no proof that NCGS is hereditary. No Connection with Celiac-related Disorders
    Unlike celiac disease, NCGS is so far not associated with malabsorption, nutritional deficiencies, or a higher risk of autoimmune disorders or intestinal malignancies. No Immunological or Serological Markers
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    Crohn’s treatment consists of changes to diet and possible surgery.  Up to 10% of Crohn's patients can have both of conditions, which suggests a genetic connection, and researchers continue to examine that connection.
    Is There a Connection Between Celiac Disease, Non-Celiac Gluten Sensitivity and Irritable Bowel Syndrome? Large Number of Irritable Bowel Syndrome Patients Sensitive To Gluten Some IBD Patients also Suffer from Non-Celiac Gluten Sensitivity Many Cases of IBS and Fibromyalgia Actually Celiac Disease in Disguise CELIAC DISEASE DIAGNOSIS
    Diagnosis of celiac disease can be difficult. 

    Perhaps because celiac disease presents clinically in such a variety of ways, proper diagnosis often takes years. A positive serological test for antibodies against tissue transglutaminase is considered a very strong diagnostic indicator, and a duodenal biopsy revealing villous atrophy is still considered by many to be the diagnostic gold standard. 
    But this idea is being questioned; some think the biopsy is unnecessary in the face of clear serological tests and obvious symptoms. Also, researchers are developing accurate and reliable ways to test for celiac disease even when patients are already avoiding wheat. In the past, patients needed to be consuming wheat to get an accurate test result. 
    Celiac disease can have numerous vague, or confusing symptoms that can make diagnosis difficult.  Celiac disease is commonly misdiagnosed by doctors. Read a Personal Story About Celiac Disease Diagnosis from the Founder of Celiac.com Currently, testing and biopsy still form the cornerstone of celiac diagnosis.
    TESTING
    There are several serologic (blood) tests available that screen for celiac disease antibodies, but the most commonly used is called a tTG-IgA test. If blood test results suggest celiac disease, your physician will recommend a biopsy of your small intestine to confirm the diagnosis.
    Testing is fairly simple and involves screening the patients blood for antigliadin (AGA) and endomysium antibodies (EmA), and/or doing a biopsy on the areas of the intestines mentioned above, which is still the standard for a formal diagnosis. Also, it is now possible to test people for celiac disease without making them concume wheat products.

    BIOPSY
    Until recently, biopsy confirmation of a positive gluten antibody test was the gold standard for celiac diagnosis. It still is, but things are changing fairly quickly. Children can now be accurately diagnosed for celiac disease without biopsy. Diagnosis based on level of TGA-IgA 10-fold or more the ULN, a positive result from the EMA tests in a second blood sample, and the presence of at least 1 symptom could avoid risks and costs of endoscopy for more than half the children with celiac disease worldwide.

    WHY A GLUTEN-FREE DIET?
    Currently the only effective, medically approved treatment for celiac disease is a strict gluten-free diet. Following a gluten-free diet relieves symptoms, promotes gut healing, and prevents nearly all celiac-related complications. 
    A gluten-free diet means avoiding all products that contain wheat, rye and barley, or any of their derivatives. This is a difficult task as there are many hidden sources of gluten found in the ingredients of many processed foods. Still, with effort, most people with celiac disease manage to make the transition. The vast majority of celiac disease patients who follow a gluten-free diet see symptom relief and experience gut healing within two years.
    For these reasons, a gluten-free diet remains the only effective, medically proven treatment for celiac disease.
    WHAT ABOUT ENZYMES, VACCINES, ETC.?
    There is currently no enzyme or vaccine that can replace a gluten-free diet for people with celiac disease.
    There are enzyme supplements currently available, such as AN-PEP, Latiglutetenase, GluteGuard, and KumaMax, which may help to mitigate accidental gluten ingestion by celiacs. KumaMax, has been shown to survive the stomach, and to break down gluten in the small intestine. Latiglutenase, formerly known as ALV003, is an enzyme therapy designed to be taken with meals. GluteGuard has been shown to significantly protect celiac patients from the serious symptoms they would normally experience after gluten ingestion. There are other enzymes, including those based on papaya enzymes.

    Additionally, there are many celiac disease drugs, enzymes, and therapies in various stages of development by pharmaceutical companies, including at least one vaccine that has received financial backing. At some point in the not too distant future there will likely be new treatments available for those who seek an alternative to a lifelong gluten-free diet. 

    For now though, there are no products on the market that can take the place of a gluten-free diet. Any enzyme or other treatment for celiac disease is intended to be used in conjunction with a gluten-free diet, not as a replacement.

    ASSOCIATED DISEASES
    The most common disorders associated with celiac disease are thyroid disease and Type 1 Diabetes, however, celiac disease is associated with many other conditions, including but not limited to the following autoimmune conditions:
    Type 1 Diabetes Mellitus: 2.4-16.4% Multiple Sclerosis (MS): 11% Hashimoto’s thyroiditis: 4-6% Autoimmune hepatitis: 6-15% Addison disease: 6% Arthritis: 1.5-7.5% Sjögren’s syndrome: 2-15% Idiopathic dilated cardiomyopathy: 5.7% IgA Nephropathy (Berger’s Disease): 3.6% Other celiac co-morditities include:
    Crohn’s Disease; Inflammatory Bowel Disease Chronic Pancreatitis Down Syndrome Irritable Bowel Syndrome (IBS) Lupus Multiple Sclerosis Primary Biliary Cirrhosis Primary Sclerosing Cholangitis Psoriasis Rheumatoid Arthritis Scleroderma Turner Syndrome Ulcerative Colitis; Inflammatory Bowel Disease Williams Syndrome Cancers:
    Non-Hodgkin lymphoma (intestinal and extra-intestinal, T- and B-cell types) Small intestinal adenocarcinoma Esophageal carcinoma Papillary thyroid cancer Melanoma CELIAC DISEASE REFERENCES:
    Celiac Disease Center, Columbia University
    Gluten Intolerance Group
    National Institutes of Health
    U.S. National Library of Medicine
    Mayo Clinic
    University of Chicago Celiac Disease Center

    Jefferson Adams
    Celiac.com 04/17/2018 - Could the holy grail of gluten-free food lie in special strains of wheat that lack “bad glutens” that trigger the celiac disease, but include the “good glutens” that make bread and other products chewy, spongey and delicious? Such products would include all of the good things about wheat, but none of the bad things that might trigger celiac disease.
    A team of researchers in Spain is creating strains of wheat that lack the “bad glutens” that trigger the autoimmune disorder celiac disease. The team, based at the Institute for Sustainable Agriculture in Cordoba, Spain, is making use of the new and highly effective CRISPR gene editing to eliminate the majority of the gliadins in wheat.
    Gliadins are the gluten proteins that trigger the majority of symptoms for people with celiac disease.
    As part of their efforts, the team has conducted a small study on 20 people with “gluten sensitivity.” That study showed that test subjects can tolerate bread made with this special wheat, says team member Francisco Barro. However, the team has yet to publish the results.
    Clearly, more comprehensive testing would be needed to determine if such a product is safely tolerated by people with celiac disease. Still, with these efforts, along with efforts to develop vaccines, enzymes, and other treatments making steady progress, we are living in exciting times for people with celiac disease.
    It is entirely conceivable that in the not-so-distant future we will see safe, viable treatments for celiac disease that do not require a strict gluten-free diet.
    Read more at Digitaltrends.com , and at Newscientist.com

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    • Retarted....The Kite Hill Ricotta is like $9 for 8oz.  Their little thing of tuffle is the same, Miyoko Mozz is like $7.42 8oz last I checked. Leaf Cuisine is cheap at like $4 for a 8oz tub of the spread. I love it mixed up and thinned down into a almond milk sauce over stuff, or spread on Mikey english muffins or my own paleo breads. Daiya is pretty cheap, it honestly taste pretty bad raw and cold but great in cooked foods....but xantham gum, canola oils, various starches....you pay for it in the processed department lol.

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