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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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kempy99

Casein-free Replacement For Cheese

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My 3-year-old was recently diagnosed with a dairy (casein) intolerance, on top of the gluten intolerance. Up until last week, we had been indulging in a great homemade gluten-free pizza recipe. Pizza crust from Chebe, Prego traditional spaghetti sauce for the sauce, hormel turkey peperoni and mozerella cheese. Well, nowcheese (and all dairy) are off limits. And what is pizza without cheese!!!!! So I went out in search of some alternative cheese product. I found some called RICE. The front of the package says "shredded dairy free mozerella-flavored cheese substitute". It is made from a rice beverage. The package says, melts like real cheese. So I thought "Ok, we'll try it". To our surprise it was really good, but then I read the back of the package. Low and behold, 'casein (a milk derivitive)' was in the ingredients list! Ugh, I am so nieve! Thinking that the front of the package says "dairy-free" I thought I was in the clear. I guess not! And I'm finding that alot of prodcuts that are labeled "dairy-free" are infact not, because they contain casein. How can they make those claims!?!??! I'll stop with the ranting here and get back on track.

Does anyone know of a caseing-free cheese substitute that would work for using on top of pizza? My 3-year-old would just be in cloud 9 if we can find a way to have pizza again! :)

Thank you!

Rebecca

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Hi - My daughter's in the same boat. However, I've found that, in very small amounts, she can handle Veggie Shreds mozzarella. It does contain casein (I just looked at the label) but, like I said, she can handle very small amounts when she definitely can't tolerate any of the "real" dairy products.

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Thanks momandgirls for the reply. See we are having a real hard time with this "dairy intolerance" because he was showing no outward signs of the intolerance (as he did with gluten). He seemed to be fine with it, but we had him screened by Enterolab for cows milk sesitivity and his results came back with a definate intolerance to dairy. In fact it indicated that he has an autoimmune reaction to it (much like that of gluten). BUMMER!!!! With the test results came an interpretation/explainationand a FAQ section. Here's what it said about dairy:

Is milk protein sensitivity as bad as gluten sensitivity and do I need to be strict with a dairy-free diet?

Research showing a high association of antibodies to cow's milk proteins in people who react similarly to gluten has been around for over 40 years. More recent research has now confirmed that these reactions to cow's milk proteins (mainly casein but also lactalbumin, lactoglobulin, and bovine serum albumin) are indeed epidemiologically related to autoimmune diseases such as diabetes, psoriasis, eczema, and asthma, among others. While formal studies of dairy-free diets, either alone or in combination with gluten-free, have not yet been conducted on a wide scale, the idea of a gluten-free/casein-free diet is not new, having been employed for decades by many health practitioners. From my objective assessment of this field, and my personal experience with my own dietary elimination for health, I recommend complete avoidance of all dairy products in anyone found to be immunologically sensitive to cow's milk protein by our tests, and anyone with an established autoimmune or chronic immune disease. I predict future research will support this recommendation. Do not bury your head in the sand waiting for such studies. Do your own study and go gluten-free/dairy-free.

So I'm really trying to maintain a "zero allowance" with him.

Thanks for your feedback.

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I understand your concern - my daughter gets very sick with dairy. She can't tolerate any "real" dairy products - even those that say they are lactose free. She avoids all dairy with the exception of the cheese that I mentioned, which she has a minimal amount of about twice a month (pizza and tacos). Unfortunately, there is no completely dairy free cheese on the market that I know of (and I've done lots of looking around!). I'll be curious, though, if anyone else here has any other ideas. Getting rid of dairy, in many ways, has been much harder than getting rid of gluten. It's hiding in so many places - I even found it in a rotisserie turkey yesterday (though the turkey was gluten free)! Good luck!

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Getting rid of dairy, in many ways, has been much harder than getting rid of gluten.

I agree completely!

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My dd is allergic to dairy as well. I haven't found any safe cheese either. She's been dairy free since June of 05' and she's adjusted well. Now we even eat cheese free pizza. She's pretty good about eating veggies so I just top it with lots of them. Her favorite part of pizza is the bread. At first I took pealed zucchini and shredded it to top the pizza with but now she dosen't notice.

I know it's hard to eliminate dairy especiallly when you're giving up gluten. After you make the inital changes it won't be quite so difficult for your child. My dd is 3 1/2 and was use to eating yogurt and drinking cows milk almost every day.

Now she does well with rice milk. We also us coconut milk and Vance's DariFree. Recently I've been making ranch dressing with organic coconut milk:) We use olive oil and coconut oils as replacements for butter. My dd is also allergic to soy, eggs, nuts etc. so to it takes some creativity to come up with replacements. It does get overwhelming sometimes....this week I've not wanted to cook much, which for us isn't and option. I'm hoping I can freeze things ahead of time to make it easier to provide healthy, quick foods.

Good luck and feel free to PM my anytime. :)

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I've been dairy-free for many many years and I love Chebe pizza with no cheese. I actually wouldn't know what to do with cheese if I could eat it.

If soy can be tolerated you might try Soymage cheese. It says "Vegan" in big letters on the front. It is completely casein-free.

Chreese is another option. www.chreese.com. You just need to add a lot of liquid (such as Rice Milk) and Earth Balance to the Mac and Chreese to make it taste right. Kids might like it (although I should warn you many people don't :) )

As a person who's had a casein intolerance my whole life (and suffered quite a bit as a kid), I can't help but highly recommend that you aviod giving a casein intolerant child even small amounts of casein at all costs - even a couple times a month. It's not worth the potential damage it can do. Sorry I don't mean to preach, but please please please don't do it!!!!!!!!!!!!!!!!!! Cheese-free pizza and tacos are good! I've been eating them that way for over ten years!

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I've been wondering the exact same thing.....I just made my daughter casein free again to see if it would help with her recent temper explosions. We have done fine eliminating casein so far, but I would love to still be able to give her pizza. The kids love Kinn. pizza night, and I have to admit, so do I. It's the one night I get off from really having to cook.

I was thinking of putting hummus on the pizza with some pepperoni. Luckily Emmie loves hummus, and it seems to be good on just about everything else.

Just to give you some motivation, we are only on day 3 of going strictly CF...and there have been ZERO tantrums yesterday or today. The kids all played great together, I was watching in shock, just waiting for the meltdown. But it never came, Em has been much happier since cutting out casein. Even my ultra skeptical husband said he noticed a change in her demeanor. And I was at least 100X more relaxed yesterday w/out enduring a full day of non stop screaming and fighting! It could be just a fluke, lord I hope not... but so far so good.

So, I'm a believe that a casein intolerance can be as bad as gluten, I'm just kicking myself for not sticking to this earlier. This was just a hunch I had as to why she didn't seem 100% yet, and so far it seems to be working.........woohoo!

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Both my kids were casien intolerant as infants, so I had to stick to a strict casien free diet while nursing. I found that making calzones instead of pizza was easier, that way everyone got what they wanted. I did mine with olive oil, veggies, turkey pepperoni, ham, Italian seasoning.....etc. EVeryone else could have cheese and it wasn't a problem. It was delish! I never found a good alternative, even after 2 years. EVERYTHING had casien. I did use hummus in place of sourcream in a lot of recipes and that worked well. I just had to learn to do without the cheese. I did find some soy ice cream that was good and of course sorbet. Cheese was always a problem, though.

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That's great! I really believe that if kids grow up without ever eating cheese, they won't want to eat cheese and they'll learn early on that it's just not a necessary food. I thought for a short period of time that I could tolerate raw goats cheese (oops I was wrong), but even during that time I had no idea what to do with the cheese. I cook quite a bit, but I just couldn't think of anything to put the cheese in. We don't need cheese!!!!! Cheese-free is a great way to be :D

I've been wondering the exact same thing.....I just made my daughter casein free again to see if it would help with her recent temper explosions. We have done fine eliminating casein so far, but I would love to still be able to give her pizza. The kids love Kinn. pizza night, and I have to admit, so do I. It's the one night I get off from really having to cook.

I was thinking of putting hummus on the pizza with some pepperoni. Luckily Emmie loves hummus, and it seems to be good on just about everything else.

Just to give you some motivation, we are only on day 3 of going strictly CF...and there have been ZERO tantrums yesterday or today. The kids all played great together, I was watching in shock, just waiting for the meltdown. But it never came, Em has been much happier since cutting out casein. Even my ultra skeptical husband said he noticed a change in her demeanor. And I was at least 100X more relaxed yesterday w/out enduring a full day of non stop screaming and fighting! It could be just a fluke, lord I hope not... but so far so good.

So, I'm a believe that a casein intolerance can be as bad as gluten, I'm just kicking myself for not sticking to this earlier. This was just a hunch I had as to why she didn't seem 100% yet, and so far it seems to be working.........woohoo!

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These are great ideas!! We like pesto and we enjoy having homemade pesto instead of tomato sauce sometimes. My dd has eczema and we've noticed that citrus & tomato breaks her mouth and lips out. So I have to be careful of home much tomato she gets. I've also roasted red peppers and pureed them with olive oil and sea salt for a great pizza spread. Mini veggie pizzas are great lunch box and snack ideas.

We can even eat popcorn with organic oils and sea salt now.

I'm a firm believer that Gluten-free Casein-free can help with postitive tempermant changes as well. We noticed a difference when our dd went gluten-free and another dramatic difference when she went cf. Who knew food could make such a difference in our physical and emotional health. :)

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Galaxy Foods says their VEGAN a nd RICE VEGAN products do not contain casein. I found them b/c I was also looking for real non-dairy cheese (for pizza).

You may have to go to an organic foods store to find their products. If anything, contact the company for a retailer near you.

http://www.galaxyfoods.com/ourbrands/usa.asp

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Follow Your Heart cheese is the BEST! It melts and is so yummy on pizza even my non vegan friends eat it. It gluten, dairy, and casein-free. Also, the pizza chain Pizza Fusion uses it for their vegan/dairy-free pizzas. It is that good.

http://www.imearthkind.com/

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Follow Your Heart cheese is the BEST! It melts and is so yummy on pizza even my non vegan friends eat it. It gluten, dairy, and casein-free. Also, the pizza chain Pizza Fusion uses it for their vegan/dairy-free pizzas. It is that good.

http://www.imearthkind.com/

great site but it contains soy....thanks tho

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We bought the Follow your heart mozzarella, montery jack and cheddar today from Whole Foods Market. Price was about $3.69 for an 8 oz block. Not too bad considering my family is currently selling 12 oz blocks of cheese from Amish country for a fundraiser for $5-6.

It tastes almost like the real thing without all the problems :P It melts great, too.

We 1st tried it at Pizza Fusion and my son was picking it off because he thought it was real cheese. :lol:

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My breastfed son is VERY sensitive to casein, but dairy products from other animals (goats, sheep, etc...) have different proteins. I use a bit of goat cheese when I have pizza... it doesn't bother him!

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I'd say the best non-cheese out there is DAIYA cheese. It's so amazingly stretchy, and completely non-dairy. I've also heard decent things about Teese, but I can't get enough of Daiya. I personally don't love the 'Follow Your Heart' or 'Rice' brands.

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We bought the Follow your heart mozzarella, montery jack and cheddar today from Whole Foods Market. Price was about $3.69 for an 8 oz block. Not too bad considering my family is currently selling 12 oz blocks of cheese from Amish country for a fundraiser for $5-6.

It tastes almost like the real thing without all the problems :P It melts great, too.

We 1st tried it at Pizza Fusion and my son was picking it off because he thought it was real cheese. :lol:

found tofu substitute posted

http://www.hipforums...ead.php?t=60131

I am a big tofu fan now that I recently discovered I have IBS. I will test the tofu on pizza and let y'all know. Thanks for listening.

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Both my kids were casien intolerant as infants, so I had to stick to a strict casien free diet while nursing. I found that making calzones instead of pizza was easier, that way everyone got what they wanted. I did mine with olive oil, veggies, turkey pepperoni, ham, Italian seasoning.....etc. EVeryone else could have cheese and it wasn't a problem. It was delish! I never found a good alternative, even after 2 years. EVERYTHING had casien. I did use hummus in place of sourcream in a lot of recipes and that worked well. I just had to learn to do without the cheese. I did find some soy ice cream that was good and of course sorbet. Cheese was always a problem, though.

omg that is a great suggestion i will try to make gluten free calzones for my daughter. she was using daiya and it says milk free but she was having tantrums, getting frustrated too easily and being super hyper. i did n't know until tonight that it still has casein and soy which is another no no for her.

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I've been gluten-free, milk & dairy free, egg white and yeast free, maltodextrin, msg, casein & whey free since 2000, though the casein dilemma threw me for a loop until I learned that is what was causing some of my problems! There is ONE cheese that I know of that has no casein or whey, and it even melts. That is VEGAN GOURMET mozarella. But, any other cheese made by VEGAN GOURMET is not safe. Good luck with this journey!

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    • I am sorry that I was not clear.    I only mentioned  your diagnostic background, not to discredit you, but because without any lab results (other than a positive gene test), how can you be sure that gluten (shampoo containing wheat protein) was the actual culprit (not a guess) of your symptoms?  It is common for celiacs to receive follow-up antibodies to monitor their dietary compliance.  This is not perfect, but it is the only tool in the toolbox for now.   My husband has been gluten free 12 years prior to my diagnosis.  He went gluten free per the poor advice of his GP and my allergist.  So, I am not trying to discount your diagnosis at all.  I am just trying to see if other lab tests (e.g. liver tests that were elevated previously for you when you were still consuming gluten) were measured after your shampoo exposure.   I am curious because I have had issues over the last year.  I was glutened last January, had the flu, a tooth infection, a cold and a tooth extraction, three rounds of antibiotics (verified to be gluten free) within a month or so.  Like, you, I am very careful.  I have no idea as to how I was exposed.   The last time I ate out was a year ago and even then it was at at 100% gluten free restaurant.   My hubby did not have any symptoms at this time.  He is like my canary.    I went to my GI and my DGP IgA was off the charts even some three months later.   My celiac-related symptoms diminished in three months, but I struggled with autoimmune hives for six.  My GI offered to do an endoscopy in the summer.  Instead I chose to follow the Fasano diet.  I still was not feeling well.  In December, my antibodies were 80.  They were either on a decline or they were increasing again.  I opted for the endoscopy.  My biopsies revealed a healed small intestine (you could see the villi on the scope too).  But I was diagnosed with chronic gastritis and had a polyp removed.   So, all this time I thought my celiac disease was active, but it was NOT the source of my current gut issues.   Again, my apologies.  I just wanted to know how you know for SURE that hydrologized wheat protein from someone else’s shampoo and conditioner could reach your small intestine to trigger an autoimmune reaction.  Maybe, like me, Gluten was not the actual culprit.    
    • 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. 
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