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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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For All Nesquik Lovers. . .

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When we first went gluten-free, Nesquik was safe. I just went to buy some nesquik the other day and found a cc with wheat warning on the label. So I checked their website, and they didn't indicate it. I emailed them, and this is the response I got:

Dear Mrs. *

Thank you for taking the time to contact us about Nestl

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The cost of independent facilities throughout the manufacturing process are *very* high, and in many cases, the cost/benefit analysis will *not* put dedicated lines or facilities as the winner. It's good for them to have the data, but we do need to keep in mind that the business case is not on our side. (1% is not a big enough market, and "just gluten intolerant" isn't solid enough to be factored into business cases with heavy weighting.)

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OMG i drink that everymorning to help get my luquid iron down, its the one form of chocolate that dosent have any soy in it, which gives me hives! crap will i guess ill find a new way. thanks for the gret info :angry:

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I eat things made on shared equipment.

I watch for a reaction ... and if something causes a reaction, I don't eat it anymore.

I know some people don't want to do it that way, which is fine. This method wouldn't work for someone who didn't react to small amounts of gluten.

Nesquick said the product had no gluten ... possible contamination. Pretty much everyone says that. We have a sue-happy society, I'd say that, too if I manufactured food.

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I eat things made on shared equipment.

I watch for a reaction ... and if something causes a reaction, I don't eat it anymore.

I know some people don't want to do it that way, which is fine. This method wouldn't work for someone who didn't react to small amounts of gluten.

Nesquick said the product had no gluten ... possible contamination. Pretty much everyone says that. We have a sue-happy society, I'd say that, too if I manufactured food.

I actually do this as well, and I do not use Nesquik but I am not a milk drinker so that is my reason. I use many items that have the CC warning and have not had an issue.

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I actually do this as well, and I do not use Nesquik but I am not a milk drinker so that is my reason. I use many items that have the CC warning and have not had an issue.

There are many products I use that have this type of CYA warning and, given the extreme reactions for some nut allergies, I can appreciate why they would do it.

BTW, if it's just chocolate milk you're after, Hershey's Syrup Special Dark has no soy in it. I just happened to have a bottle near the computer (thanks to Hubby) and it lists the following ingredients:

Sugar, high fructose corn syrup, corn syrup, water, cocoa

Processed with alkali: contains 2% or less of salt, mono- and di-glycerides, xnathan gum, polusorbate 60 and vanillin, artificial flavor

It could be hiding in the artificial flavor but they would be required to list it as an allergen and there is no listing for soy.

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I eat things made on shared equipment.

I watch for a reaction ... and if something causes a reaction, I don't eat it anymore.

I know some people don't want to do it that way, which is fine. This method wouldn't work for someone who didn't react to small amounts of gluten.

Nesquick said the product had no gluten ... possible contamination. Pretty much everyone says that. We have a sue-happy society, I'd say that, too if I manufactured food.

I agree. I'll buy stuff that's made in a facility with wheat products, but if it says "may contain" I stay away.

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I was just reading about the Nesquik may have a cross contamination issue. My 6 year old was diagnosed with celiac disease in Oct. 2006 through blood work and Nov. 2006 through the scope. I have hopefully kept him on a gluten free diet since the blood work. I give him the Nesquik ready to drink bottles. Do you know if there is that chance with those as well? I looked on it and did not see anything.

Thanks for any information you may have.

Diana

I am new to this so I hope I did this the correct way. :rolleyes:

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I also give my son food made in shared facilities. The way that I look at is that nearly all non-specialty foods are made in shared facilities and likely on shared lines, and some companies are upfront and honest about it. If I only gave my son foods made in gluten-free facilities that would severely limit his diet and life style. If my son has a reaction to a food then I will throw away that item, but I may buy it again in the future because cross contamination seems to be a hit and miss process (mostly miss thankfully). It's just my point of view. I want my son to be happy and healthy, but I cannot keep him in a bubble.

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My kids love both the Rich Chocolate Ovaltine and the Carnation Instant Breakfast Chocolate powder. Now both probably have the same CC risk since both products have other flavors which contain malt, but they don't ever seem to have any issues with either product and they are all pretty severe in their reactions when they do get glutened...

Neither product has soy in it, (I also have a soy allergy so I avoid that particular contaminate!), but they do have milk in them (which I also avoid), so I don't drink them. I do use the Hersheys Special Dark syrup on occasion though! No dairy or soy in that!

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My kids love both the Rich Chocolate Ovaltine and the Carnation Instant Breakfast Chocolate powder. Now both probably have the same CC risk since both products have other flavors which contain malt, but they don't ever seem to have any issues with either product and they are all pretty severe in their reactions when they do get glutened...

Neither product has soy in it, (I also have a soy allergy so I avoid that particular contaminate!), but they do have milk in them (which I also avoid), so I don't drink them. I do use the Hersheys Special Dark syrup on occasion though! No dairy or soy in that!

I love Carnation Instant Breakfast! Alas, it's got a lot of lactose in it...add milk to that, and it's dangerous stuff...even with Ultra Lactaid. :lol:

Michelle

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I love Carnation Instant Breakfast! Alas, it's got a lot of lactose in it...add milk to that, and it's dangerous stuff...even with Ultra Lactaid. :lol:

Michelle

I know what you mean. I am casein intolerant and try to avoid all dairy all the time. So I can't even take Lactaid to help...The breakfast shake mixed with milk would just be pure torture!

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I know this is an old post, but I'm glad I found it!  Had a few sips of my husbands Nesquik last night, woke up feeling awful with joint pain and have spent most of the day in the bathroom.  That explains it!  I'm always very careful because both my son and I are extremely sensitive to any gluten content. 

 

Thanks for the info!

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I know this is an old post, but I'm glad I found it!  Had a few sips of my husbands Nesquik last night, woke up feeling awful with joint pain and have spent most of the day in the bathroom.  That explains it!  I'm always very careful because both my son and I are extremely sensitive to any gluten content. 

 

Thanks for the info!

I see many people here use or would use this. However, I will avoid it. Blenderly, you saw possible reaction to this, others say they have not. It seems some people may react even when others do not. I would be cautious about waiting for a noticeable reaction. That is, many don't exhibit a noticeable reaction to gluten. But what is happening really in your body? I am very sensitive myself. While many things can have a risk of cross contamination, when I see that something is made on equipment shared with wheat especially - not worth the risk! A reaction for me is a horrible experience! I tend to avoid processed foods as much as possible except where specifically gluten free (I prefer the companies that focus on this). I know this is a challenge for parents. I would be particularly careful if my child was sensitive though. 

I apologize if that sounded preachy. I was just surprised at the posts. Usually in this forum I see everyone being extremely cautious of any risk, even when obvious symptoms are not present. I love chocolate, but will avoid Nequick.

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I know this is an old post, but I'm glad I found it!  Had a few sips of my husbands Nesquik last night, woke up feeling awful with joint pain and have spent most of the day in the bathroom.  That explains it!  I'm always very careful because both my son and I are extremely sensitive to any gluten content. 

 

Thanks for the info!

 

 

I see many people here use or would use this. However, I will avoid it. Blenderly, you saw possible reaction to this, others say they have not. It seems some people may react even when others do not. I would be cautious about waiting for a noticeable reaction. That is, many don't exhibit a noticeable reaction to gluten. But what is happening really in your body? I am very sensitive myself. While many things can have a risk of cross contamination, when I see that something is made on equipment shared with wheat especially - not worth the risk! A reaction for me is a horrible experience! I tend to avoid processed foods as much as possible except where specifically gluten free (I prefer the companies that focus on this). I know this is a challenge for parents. I would be particularly careful if my child was sensitive though. 

I apologize if that sounded preachy. I was just surprised at the posts. Usually in this forum I see everyone being extremely cautious of any risk, even when obvious symptoms are not present. I love chocolate, but will avoid Nequick.

 

 

These original posts are 6 years oldThe products may not contain the same ingredients any longer.  Please look at the ingredients, company websites, maybe even email the company if you feel the need.  Just don't make any assumptions based on such old info.

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I was just diagnosed yesterday via lab testing and was quite shocked.  I have been looking for gluten free replacements for things as I am a definite bread-lover.  I have been using the Non-Sugar-Added Nesquik every day since long before it the name change from Nestle's Quik and just checked the label this morning.  I does say "May contain wheat"....not that there may cross contamination, but since i am so new to this I don't know if those are essentially the same thing.   I guess I will need to be a little more strict in the beginning and then try adding things back in a few months that may not be definite offenders.   If it doesn;t work, I will have to find a substitute.  I did find Carnation Breakfast Essentials Light Start is Gluten Free, but much more expensive for using every day.  But apparently almost everything gluten-free is if it is not naturally that way.....

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20 minutes ago, Audio51 said:

I was just diagnosed yesterday via lab testing and was quite shocked.  I have been looking for gluten free replacements for things as I am a definite bread-lover.  I have been using the Non-Sugar-Added Nesquik every day since long before it the name change from Nestle's Quik and just checked the label this morning.  I does say "May contain wheat"....not that there may cross contamination, but since i am so new to this I don't know if those are essentially the same thing.   I guess I will need to be a little more strict in the beginning and then try adding things back in a few months that may not be definite offenders.   If it doesn;t work, I will have to find a substitute.  I did find Carnation Breakfast Essentials Light Start is Gluten Free, but much more expensive for using every day.  But apparently almost everything gluten-free is if it is not naturally that way.....

Equal parts Hershey Coco Powder and a sweetener with a pinch of salt. Super easy to make your own.  I like adding a bit to my coffee with almond milk, and lakanto sugar free maple, or a bit of monk fruit or stevia. 
PS you might want to drop dairy milk. The enzymes to break it down come from the tips of the villi in your intestines....these are damaged first. You can probably reintroduce in a few months but we normally suggest dropping it, and going to a whole foods only diet when first going gluten free. Welcome to the community by the way here are some useful links.

https://www.celiac.com/gluten-free/topic/91878-newbie-info-101/

https://www.celiac.com/gluten-free/topic/117090-gluten-free-food-alternatives-list/

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5 hours ago, Ennis_TX said:

Equal parts Hershey Coco Powder and a sweetener with a pinch of salt. Super easy to make your own.  I like adding a bit to my coffee with almond milk, and lakanto sugar free maple, or a bit of monk fruit or stevia. 
PS you might want to drop dairy milk. The enzymes to break it down come from the tips of the villi in your intestines....these are damaged first. You can probably reintroduce in a few months but we normally suggest dropping it, and going to a whole foods only diet when first going gluten free. Welcome to the community by the way here are some useful links.

https://www.celiac.com/gluten-free/topic/91878-newbie-info-101/

https://www.celiac.com/gluten-free/topic/117090-gluten-free-food-alternatives-list/

Thank you!   I see a Dietician early next month and figured I will need to be more strict early on.    There is so much to learn.  I am grateful for the apps available that allow me to scan UPC's to find out what is and is not gluten-free, but will be confirming by reading labels  too.   I cleared out quite a bit of space in my cupboard today.  It is only me in the house since I lost my husband earlier this year so it will be easier to control what is in the house.    He loved bread as much as me so it would have been much harder with the 2 of us here

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23 minutes ago, Audio51 said:

Thank you!   I see a Dietician early next month and figured I will need to be more strict early on.    There is so much to learn.  I am grateful for the apps available that allow me to scan UPC's to find out what is and is not gluten-free, but will be confirming by reading labels  too.   I cleared out quite a bit of space in my cupboard today.  It is only me in the house since I lost my husband earlier this year so it will be easier to control what is in the house.    He loved bread as much as me so it would have been much harder with the 2 of us here

Sorry to hear about the loss, bread is a pain for some, Canyon house makes one many swear by...I have 2 issues with it so I can not even try it. I been using Julian Bakery Bread for awhile, the seed one was wonderful even toast like gluten bread, while the coconut one made the most amazing french toast, and the almond one was great toasted with mashed avocado. I recent perfected a sandwich bread for my bakery, so will be making my own grain free, starch free, 1 net carb bread loafs for myself.
NOW a bit more on this topic, I am currently converting it to a sugar free German chocolate cake loaf for testing this weekend (these are going to be bakery item only for my store)

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I did find a local store that carries the Canyon House brand and will give that a try.  It can be tough as I live in a fairly rural area and we don't have a lot of the resources many of the more urban areas do. It is a 1 hour round trip just to get to the closest town with anything like a Trader Joe's or New Earth Grocery.  One of out 2 health food stores in town even closed down a few years ago ands this town is full of Seventh Day Adventists that do a lot of shopping at health food stores.  Most of my shopping will likely be done online at Amazon, but there is much more availability at even SaveMart and Safeway nowadays.

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29 minutes ago, Audio51 said:

I did find a local store that carries the Canyon House brand and will give that a try.  It can be tough as I live in a fairly rural area and we don't have a lot of the resources many of the more urban areas do. It is a 1 hour round trip just to get to the closest town with anything like a Trader Joe's or New Earth Grocery.  One of out 2 health food stores in town even closed down a few years ago ands this town is full of Seventh Day Adventists that do a lot of shopping at health food stores.  Most of my shopping will likely be done online at Amazon, but there is much more availability at even SaveMart and Safeway nowadays.

In the beginning, you might find ANY gluten free bread abhorrent.  So, you might wait a few months to give yourself time to forget what wheat bread tasted like. 

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    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