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      Frequently Asked Questions About Celiac Disease   09/30/2015

      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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1974girl

Lunchables Question

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Ok...start of week 2 for my 11 year old. I have a question. I was looking at the Luchables "nachos". I can't really remember if it was the Kroger brand or actual Lunchables now. But...there were no gluten ingredients but it was made in a factory that manufactered flour products. So obviously they couldn't guarantee anything. These would be so great for when our friends ask us to go to Taco Bell (used to be weekly after church). Is this safe? I did an hour of nutritional counseling and didn't hear anything about this). I know cross contamination is an issue. How big of an issue for food processed in the same factory? I didn't buy it because I was scared. I find this in a lot of food. Do you guys buy it if it is made in a factory that processes wheat products sometimes. I still eat in restaurants that do so I was wondering if it is any different. Thanks

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We have used the nacho lunchables...But no others.. And I'm glad to see you wouldn't feed the child Taco Bell...Chipotle Grill has a gluten-free menu if one is near you...& MIghty Taco as well. I'm sure htere are others!

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I know cross contamination is an issue. How big of an issue for food processed in the same factory? I didn't buy it because I was scared. I find this in a lot of food. Do you guys buy it if it is made in a factory that processes wheat products sometimes. I still eat in restaurants that do so I was wondering if it is any different. Thanks

It depends on an individuals sensitivity level. Some people need to avoid shared facilities, some people don't.

Our home is not gluten free. The wheat eaters have a cabinet that contains bread, snack crackers, cereal, etc. So technically, like my good friend Peter says, my house is a shared facility.

If you've been doing well on the gluten free diet and want to see if you can handle shared facility items, you can try adding ONE item. If there is no reaction the first time, great. However, eat it several times (as long as you continue to feel great) and make sure that there is not some kind of trace amount that builds up with repeated exposure.

My daughter is not overly sensitive. She eats shared facility items all the time. I do not buy the items that say "may contain trace amounts of wheat". This may in fact just be another way of saying "shared facilities", but it just seems more ominous. I will say that she started out eating shared facility items. I just assumed that as long as gluten wasn't an ingredient she would be OK. If she had failed to make progress, I would have taken it to the next level of gluten freeness (dedicated facilities).

Just so you know, manufactures don't have to list "shared facilities" on their labels. So unless you have verified that the items that you are eating do in fact come from dedicated facilities, you may already be eating shared facility items.

As for the nachos . . . I occasionally buy the Kraft lunchables snack size nachos. It's good for if my daughter is doing a sleep over and the rest of the girls are doing pizza. . . it looks like (because it is) normal kid junk food.

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Just an FYI

Many companies have policies for disclosing gluten on their ingredient lists. The three big ones are Kraft, Unilever, and ConAgra. If you read their ingredient list, the generic terms like "natural flavors" or "spices" will have something like a "(derived from barley)" if the barley was indeed part of the natural flavoring.

We have no problems using the Kraft, Unilever, and ConAgra products.

Here is a more complete list of the Companies that disclose gluten on their labels:

http://www.glutenfreeindy.com/foodlists/index.htm#donothidegluten

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Thanks guys- My daughter doesn't have any symptoms at all so it will be hard to know what affects her. She had a random blood test since she has Hashimotos thyroid and it came back positive. The biopsy showed "simplification" which I think it another term for blunting. Only one biopsy showed this, the rest were ok. So, we have caught it early. That's why I question everything. I will have no idea if it hurts her. She has been eating gluten for 11 years and we had no clue. : (

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Thanks guys- My daughter doesn't have any symptoms at all so it will be hard to know what affects her. She had a random blood test since she has Hashimotos thyroid and it came back positive. The biopsy showed "simplification" which I think it another term for blunting. Only one biopsy showed this, the rest were ok. So, we have caught it early. That's why I question everything. I will have no idea if it hurts her. She has been eating gluten for 11 years and we had no clue. : (

My son doesnt react to small amounts of gluten like I do but its the damage that happens inside that I dont see that I worry about. I dont want to risk my son getting sick so we buy stuff from dedicated gluten free facilities & make everything ourselves that we can. I'm way more sensitive then him & dont like getting sick. In my opinon its not worth taking risks that I know could harm him. -Just my .02 here.

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My pedi GI says i must train my kids to eat only raw foods -fruits n veggies-when they're out so they can get used to that. I try my best to not buy shared facility foods at the grocery store but yes when out and about there's times that's all there is to choose from. I don't react either to cc but my son has many times. I think maybe it's doing the same to both of us but he's so much smaller and shorter intestines. So I really try to make everything too. When others offer to help I suggest a raw veggie or fruit tray.

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Why not just make your own?

I buy lunchmeat at the deli counter (Boar's Head is all gluten free) and have them slice it a little thicker. Then I buy the big cheese blocks and cut them up. You could buy the cheese at the deli counter and do the same thing.

Schar table crackers are pretty darn good. Better than Glutino, IMO.

Then I just throw in a Jello cup and Capri Sun. Good to go.

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I agree with xjrosie. Why spend all that money on a lunchable when you can buy high quality meats/cheeses (Boars Head) and do it yourself. I'm sure the nutritional value is much better.

I have a question about Zone Protein Bars. My DD used to eat the Peanut Butter/Chocolate one's before she was diagnosed with Celiac. I read the label and there's no gluten, however it's manufactured in a facility that contains wheat. I did skim through this thread and figured out that it depends on your sensitivity on whether to "try" it or not. As a Celiac isn't it important to just "stay away" from even facilities. Some symptoms are happening when you are not aware??? What's this about the whole Barley thing? The U.S. doesn't have to label barley containing ingredients?

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    • The reason I think it was the shampoo? Process of elimination. Our house is almost entirely gluten free (except for this shampoo which slipped through the cracks until I read the ingredient label). My husband has bread that he eats at lunch, but he practices something that resembles aseptic technique from the lab when he's making his sandwiches. He's been doing this for years now and I've never been glutened from within my home. The previous week I hadn't eaten out, I cooked all my food, I don't eat processed food and I never eat something from a shared facility.  Usually if I get glutened it's a single dose sort of thing and it follows a very predictable course, to the point where I can estimate when I got glutened within 24 hours of when it happened. However, this time, I was feeling achy and arthritic and moody for about a week before it got bad enough for me to recognize it as the result of gluten exposure, at which point we went searching and found the shampoo (and conditioner, which does leave more of a residue than shampoo), which he immediately stopped using. Within three days I was feeling back to normal (which is the usual course for me).  Sure, it could have been something else, but I know how sensitive I am, and, as silly as it sounds, it was the only thing that made sense. The other thing you said: You're correct, mine was not a rock solid celiac diagnosis, but I have no doubt that gluten is the problem. I was SICK. I went through two different gluten challenges in an effort to get a more straightforward diagnosis during which I was a barely functioning human being. Consuming gluten may not have given me blunted villi or elevated antibodies, but it did inflame my gut, and actually started to damage my liver. If you look at my diagnosis thread, I had elevated liver enzymes, which have been correlated with celiac disease in the past. There was no alternative explanation for the liver enzymes, he checked EVERYTHING.  I too am a scientist and I have spent a lot of time with the literature trying to make sense of my condition.  https://www.ncbi.nlm.nih.gov/pubmed/26150087 I also have no doubt that gluten was damaging my intestines in some way, as any prolonged gluten exposure in the past has inevitably been followed by a severe FODMAP intolerance that goes away once I've eliminated the gluten and given myself a month or so to heal.  I also had a very fast diagnosis following the onset of symptoms (~1 year) so it's possible that the disease never had a chance to manifest as full celiac. I wasn't willing to eat gluten long enough to find out. As a result of my diagnosis, hazy as it was, I am *meticulously* gluten free. It is not a fad for me. I don't occasionally cheat. It is my life, for better or worse. All of that being said, I'm not sure what my diagnosis has to do with your question. You say you're not trying to be rude, but when you bring up my diagnosis in a thread that has nothing to do with diagnostics, it seems like you're trying to undermine the validity of my disease or the validity of my input in this forum. If I'm being hypersensitive, I apologize, but that's how you came across on my end. I'll admit that the fact that my diagnosis wasn't more straight forward does make me a bit defensive, but I promise that even if I didn't have a solid diagnosis, I interact with the world as though I did, and I'm not out there giving people the wrong idea about celiac disease by not taking it seriously. If there was a connection between your question and my diagnostics that I missed I would appreciate you giving me the chance to better understand what you were asking. 
    • I am just curious.  As a scientist (and I am not trying to be rude), how can you determine if hydrologized wheat protein from your husband’s shampoo was actually the culprit?  If I recall at your diagnosis, you were seronegative, Marsh Stage I, gene positive,  but your doctor still  suspected celiac disease.  You improved on a gluten diet.  Other than observation, how do you really know?  Could it not be something else that triggered your symptoms?   I firmly believe that even trace amounts of gluten (under 20 ppm), can impact sensitive celiacs.  But traces of a protein within a shampoo from someone else’s hair that was rinsed?    
    • I also can't have dairy but through a series of experiments and a lot of research I think I've pinpointed my problem. It may or may not be the same for you, but I thought I'd share.  There are two kinds of beta-casein protein A1 and A2. We'll call A1 "bad casein" and A2 "good casein". The two proteins differ only in a single amino acid, but this is enough to make it so that they are processed differently in your guy. Bad casein is actually broken down into a casomorphin, which is an opioid peptide. That does not mean that milk gets you high, or is as addictive as heroin, or anything like that, it just means that it can interact with opioid receptors (which the gut has a bunch of). It's worth noting that opioids cause constipation due to their interaction with the opioid receptors in the gut, and that a lot of people feel like cheese and dairy slow things down, but any connection between the two is pure speculation on my part at this point.  Now here's where things get weird. The vast majority of milk cows in the western world are derived from Holstein-like breeds, meaning black and white cows. In a few select places, you'll see farms that use Jersey-type cows, or brown cows (Jersey cows produce less milk than Holsteins, but many connoisseurs feel it's a higher quality milk, particularly for cheese).  Holstein-like cows have A1 and A2 casein (bad and good), however, Jersey-type cows only have A2 (good casein), unless their genetic line involved a Holstein somewhere in the past, which does happen.  A company in New Zealand figured out how to test their cows for these two genes, and selected their herd down to cows that specifically produce ONLY A2 (good) casein. You might have seen it in the store, it's called A2 milk. Some people have had a lot of luck with this milk, though it still doesn't solve the problem of cheese.  I have suspected, due to trial and error and a few accidental exposures, that I have a problem with A1 casein, but not A2. In line with this: I am able to eat sheep and goat dairy without any difficulty, so at least I can still enjoy those cheeses! I am also fortunate because I'm apparently not too sensitive, as I can still eat cow-milk butter. The process of making butter removes *most* (read: enough for me) of the casein.  However, if I eat cow cheese or a baked good with milk, I get really sick. It's a much faster reaction than if I get glutened. Within minutes I'm dizzy and tired and my limbs are heavy. I have to sleep for a couple of hours, and then, over the next couple of days, I'm vulnerable to moodiness and muscles spasms and stomach upset just as though I'd been glutened (though the brain fog isn't as bad). I actually haven't tried A2 milk yet, mostly due to lack of availability (and motivation, I don't miss milk, I miss CHEESE). However, last year, when I was getting ready to go on a trip to Italy, I had a thought. Once, in the recent past, when I'd been testing dairy, I'd had a slice of parmesan cheese. Miracle of miracles, I was fine. I didn't feel a thing! I was so excited that I ran out and got some brie to eat as a snack. That did not go so well... Turns out parmigiano reggiano is made from the milk of the Reggiana variety of cow which is, you guessed it, a brown cow (they say red). I did a little more research and found that dairies in Italy predominantly use brown cows. So I decided to try something. As some of you may know, Italy is something of a haven for celiacs. It's one of the most gluten-free friendly places I've ever been. You can say "senza glutine" in the smallest little town and they don't even bat their eyelashes. You can buy gluten free foods in the pharmacy because they're considered a MEDICAL NECESSITY. If travelling-while-celiac freaks you out, go to Italy. Check out the website for the AIC (Italy's Celiac society), find some accredited restaurants, and GO NUTS. While I was there, I decided to see if I could eat the dairy. I could.  Friends, I ate gelato Every. Single. Night. after that. It was amazing. Between the dairy being safe for me and the preponderance of gluten free options, it was almost like I didn't have dietary restrictions. It was heaven. I want to go back and never leave.  So that's my story. Almost too crazy to believe.  TL;DR: Black and white cows make me sick, brown cows are my friends.
    • I'm a scientist, and I did a little research into the study. Looks valid and it was published in a respected journal.  http://www.gastrojournal.org/article/S0016-5085(17)36352-7/pdf The science looks solid. As someone who didn't have a super clean cut diagnosis before going gluten free, I'd love to see something like this become available. Then again, there's no doubt in my mind that I can't have gluten, so any additional testing would be purely academic. But like I said, I'm a scientist. I can't help myself. 
    • Update: I have tried calling the company several times and have emailed twice. I have yet to talk to a person on the phone and no one has emailed me back.    I did a little research and they were are already involved with a class action lawsuit about being labeled as salt free and one of the first ingredients is sodium chloride.  I am done with this shampoo because this whole company seems a little shady now! 
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