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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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Should You Put Your Child On A Gluten-Free Diet?

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I run into many parents who are in quite a quandary about instituting a gluten-free diet for their child. A typical scenario is that one of the parents is gluten intolerant and is highly suspicious that their child is as well. Due to the child being 'relatively healthy' the non-gluten intolerant spouse suggests that the child be able to 'live a little' and enjoy the cake and pizza that is so prevalent during children's parties and sporting events.

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What's up with all these 5 year old articles?

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1 hour ago, Victoria1234 said:

What's up with all these 5 year old articles?

It might generate based on traffic searches  or posts etc. My guess. I read them and respond because I wasn't on here as a member in 2012. I only use to visit then. So it's new to me V.

happy friday

 

😋

 

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Funny though, my brother and I were just discussing this. He has celiac and both his son and him are gene positive. Both were TTG/EMA negative but never tested for DGP. My brother had damage on endoscopy. They have not scoped his son. He feels his son is symptomatic but not his daughter. 

I have conflicting positive and negative DGP, recent damage on biopsy and negative TTG/EMA. Two years ago my son had negative TTG and DGP. No EMA. I plan to have him gene tested and full antibodies screened again. 

My brother has opted to have his children follow a gluten-free diet. I am currently allowing my son a normal diet. 

But my own chaos with diagnosis, and my brother's too because he was TTG negative, makes me ultra sensitive to the possibility. 

My son's ped doc has a  daughter who was recently diagnosed with celiac.  it was in the family so her mom, my son's doctor, suspected it as soon as she started getting digestive issues and losing weight.  she pretty much told me that she was glad that they didn't put her on a gluten-free diet as a child so she can enjoy eating the things she wanted to Throughout her life.  I have to say I agree to a large extent. There are many diseases that we could get At anytime. we cannot change our lives for that reason alone.

 However that being said, my family has both thyroid disease and multiple sclerosis as well.   I know all too well the naive statements and assumptions that doctors can make in the face of science still working to find conclusions.  There are other types of TTG the doctors don't typically test for.  I am well aware of this, and sensitive to it. As a parent, I'm going to allow my son to continue on a normal diet for now, but we are going to pursue testinG  And I'm going to watch it very closely.

 

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22 minutes ago, ironictruth said:

Funny though, my brother and I were just discussing this. He has celiac and both his son and him are gene positive. Both were TTG/EMA negative but never tested for DGP. My brother had damage on endoscopy. They have not scoped his son. He feels his son is symptomatic but not his daughter. 

I have conflicting positive and negative DGP, recent damage on biopsy and negative TTG/EMA. Two years ago my son had negative TTG and DGP. No EMA. I plan to have him gene tested and full antibodies screened again. 

My brother has opted to have his children follow a gluten-free diet. I am currently allowing my son a normal diet. 

But my own chaos with diagnosis, and my brother's too because he was TTG negative, makes me ultra sensitive to the possibility. 

My son's ped doc has a  daughter who was recently diagnosed with celiac.  it was in the family so her mom, my son's doctor, suspected it as soon as she started getting digestive issues and losing weight.  she pretty much told me that she was glad that they didn't put her on a gluten-free diet as a child so she can enjoy eating the things she wanted to Throughout her life.  I have to say I agree to a large extent. There are many diseases that we could get At anytime. we cannot change our lives for that reason alone.

 However that being said, my family has both thyroid disease and multiple sclerosis as well.   I know all too well the naive statements and assumptions that doctors can make in the face of science still working to find conclusions.  There are other types of TTG the doctors don't typically test for.  I am well aware of this, and sensitive to it. As a parent, I'm going to allow my son to continue on a normal diet for now, but we are going to pursue testinG  And I'm going to watch it very closely.

 

Ironic,

We went entirely gluten-free in our home after 2016 for how bad my neurological , joints, mood gets now in addition to my former gi, skin, and other issues . My son shows signs of my early symptoms and voluntarily went off gluten, corn, and milk like me as he did his own food like diary symptom tracking.

My daughter continues on gluten outside the home. We warn her of our concern for at times in toddler hood she was constipated and would bloat. 

We asked their Dr to test them as I was undergoing my testing and she said no until I had my diagnosis. As we know these things take time and my son went gluten-free . He said after watching mom on my gluten challenge that he will not go back on it . 

We await technology further research and we silently watch our soon to be teen girl for we know even if tested negative it can show up one day. 

She says I know mom I know.

The more Whole Foods here in the home we notice she actually craves gluten / processed foods less and is slowly transitioning as well. 

Does your child also naturally eat less gluten and processed as well away from home? I wonder if the taste buds / craving change as the parents diet changes food options. 

Thoughts?

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9 hours ago, Awol cast iron stomach said:

 

Ironic,

We went entirely gluten-free in our home after 2016 for how bad my neurological , joints, mood gets now in addition to my former gi, skin, and other issues . My son shows signs of my early symptoms and voluntarily went off gluten, corn, and milk like me as he did his own food like diary symptom tracking.

My daughter continues on gluten outside the home. We warn her of our concern for at times in toddler hood she was constipated and would bloat. 

We asked their Dr to test them as I was undergoing my testing and she said no until I had my diagnosis. As we know these things take time and my son went gluten-free . He said after watching mom on my gluten challenge that he will not go back on it . 

We await technology further research and we silently watch our soon to be teen girl for we know even if tested negative it can show up one day. 

She says I know mom I know.

The more Whole Foods here in the home we notice she actually craves gluten / processed foods less and is slowly transitioning as well. 

Does your child also naturally eat less gluten and processed as well away from home? I wonder if the taste buds / craving change as the parents diet changes food options. 

Thoughts?

We do not have gluten in my home other then the bread he  Uses to make school lunch sandwiches.  however I am divorced so he spends a good part of the week at his dad's as well where he can eat whatever he wants. My son is a terrible eater and has been very picky since he was 2 years old, he's now 6.  Up until recently he literally would only eat 5 things. He once vomited all over my kitchen after I insisted that he try watermelon. 

 In the last several months he's been expanding what it is that he will eat however. Unfortunately still no fruits or vegetables, I have to sneak those In via juice.

 it is actually one of the reasons that  I am not in a hurry to get him tested. I have to return to Boston to see my specialist next summer and we are going to take my son with us then for testing.  so it buys me time to expand his food list just in case we have to take half of it away.

 my brother's children however, because he's a farmer, have always eaten a lot of Whole foods.  his house is totally gluten free but his mother-in-law will take his daughter out for treats occasionally. She does not seem to suffer any adverse reactions. My nephew on the other hand was always constipated and bloated when he was on gluten.  The kids will literally just walk out into the garden and grab a cucumber and start eating it basically.  I'm not even exaggerating. I am envious that his kids will do that and I wish that I had  tried harder with my son when he was younger instead of always defaulting to what he would eat.

 I know my nephew will verbalize a memory of not liking some of the changes that were made initially at their house, like with the gluten-free bread. But then he will say he likes it now. So I think kids do definitely adjust  their preferences.  unless of course you're my son, and then the neighbors are wondering whether or not they should call Child Protective Services because  There is an awful lot of screaming next door at dinner time.

 

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5 hours ago, ironictruth said:

We do not have gluten in my home other then the bread he  Uses to make school lunch sandwiches.  however I am divorced so he spends a good part of the week at his dad's as well where he can eat whatever he wants. My son is a terrible eater and has been very picky since he was 2 years old, he's now 6.  Up until recently he literally would only eat 5 things. He once vomited all over my kitchen after I insisted that he try watermelon. 

 In the last several months he's been expanding what it is that he will eat however. Unfortunately still no fruits or vegetables, I have to sneak those In via juice.

 it is actually one of the reasons that  I am not in a hurry to get him tested. I have to return to Boston to see my specialist next summer and we are going to take my son with us then for testing.  so it buys me time to expand his food list just in case we have to take half of it away.

 my brother's children however, because he's a farmer, have always eaten a lot of Whole foods.  his house is totally gluten free but his mother-in-law will take his daughter out for treats occasionally. She does not seem to suffer any adverse reactions. My nephew on the other hand was always constipated and bloated when he was on gluten.  The kids will literally just walk out into the garden and grab a cucumber and start eating it basically.  I'm not even exaggerating. I am envious that his kids will do that and I wish that I had  tried harder with my son when he was younger instead of always defaulting to what he would eat.

 I know my nephew will verbalize a memory of not liking some of the changes that were made initially at their house, like with the gluten-free bread. But then he will say he likes it now. So I think kids do definitely adjust  their preferences.  unless of course you're my son, and then the neighbors are wondering whether or not they should call Child Protective Services because  There is an awful lot of screaming next door at dinner time.

 

LOL about the screaming kid at dinner time.  I am happy to report that one of my brothers lived on grilled cheese, Captain Crunch and Bacon and Toast (those foods stick out the most in my memory).  He  eats just about anything now.  If I recall, peers had a pretty dramatic impact on his food behavior as he aged (that and maturing).    So, do not lose hope!  

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2 hours ago, cyclinglady said:

LOL about the screaming kid at dinner time.  I am happy to report that one of my brothers lived on grilled cheese, Captain Crunch and Bacon and Toast (those foods stick out the most in my memory).  He  eats just about anything now.  If I recall, peers had a pretty dramatic impact on his food behavior as he aged (that and maturing).    So, do not lose hope!  

You have given me hope! 

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    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.
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    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
    People with celiac disease nearly always test positive for antibodies to gluten proteins. Researchers have, as yet, identified no such antobodies or serologic markers for NCGS. That means that, unlike with celiac disease, there are no telltale screening tests that can point to NCGS. Absence of Celiac Disease or Wheat Allergy
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    IBS and IBD are usually diagnosed in part by ruling out celiac disease. Many patients with irritable bowel syndrome are sensitive to gluten. Many experience celiac disease-like symptoms in reaction to wheat. However, patients with IBS generally show no gut damage, and do not test positive for antibodies to gliadin and other proteins as do people with celiac disease. Some IBS patients also suffer from NCGS.

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    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. 
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    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