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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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If you go to bed feeling fine after dinner and wake up fine and eat breakfast and then a few hours later blow up like a huge balloon and look 7 mo. pg with pain and trapped gas etc. is it safe to assume that what you had for breakfast is the culprit or should I look to what I had for dinner?

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For me...it would likely be something I ate for breakfast. For some, it takes longer. What did you eat for breakfast? Its possible its not gluten but a food you ate, too. Lactose intolerance does that, too.

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I used to react quickly (I called myself a fast-responder") , now I am on "tape delay" :rolleyes:

so, figuring out where/when for me is like driving in Boston traffic.

In other words--nearly impossible.

I know sometimes I get gut swelling/histamine responses from OTHER foods like sausages, salami, tomato

or too much cheese.

Could be you're still healing and something is just not agreeing with you?.

or you have a temporary dairy intolerance?

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I would try to record what I ate for both. I would decide what could be suspicious and what I feel totally safe with. Sometimes you can find it in the ingredients, or can compare it to other times. Sometimes you never figure it out. I try to decide on the most questionable item and when I eat it again (If I do) beware. Sometimes I discover the ingredient does not cause it after-all, and sometimes I catch the culprit.

I hope you will find it. (Did I just see it in another post? ) I hope you will feel better soon.

Diana

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Thanks girls!

Heck I don't know what got me but something did big time as I just had to crawl up the stairs b/c of weakness when just the other day I was out hiking and feeling good.

I have a migraine, joint pain, mucus discharge, gas....you know the drill.

-Mo

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Mo,

I understand your frustration. I really do. I have to squash frustration all the time. :rolleyes:

I can't tell you how many times at the beginning of this healing thing when I thought I was home free and "cruising along" and bam!.....nope.

I had a lot of good days/bad days up -and- down stuff for many months, then it all calmed down.

(the GI stuff anyway). The other symptoms I have take longer to resolve.

Keep a notebook and see if you can tell what's bugging your system. (truth be told, I kept one and still could never figure it out).

I thought I had issues with everything from sals to fructose to amines. The thing is, with a ravaged gut, we can have issues with ANYTHING.

I actually do have a problem with high histamine foods and to resolve that, I take them out for a month and the problem resolves.

Various enzymes that help digest and break down foods in the gut are depleted because of celiac. When the villi regrow and the inflammation dies down, you should be able to eat most foods without problems. (Notice I said "should" because some celiacs have other food intolerances or allergies develop to foods like dairy and soy. Notice I said some. :D)

My GI doc did extensive testing to make sure I did not have other GI tract issues or inflammatory bowel diseases or infections.

We tested for pathogens (I had no measureable good gut bacteria, so I supplement heavily with probiotics)

We test frequently for any other AI diseases (I did have a hypothyroid, then a hyperthyroid problem, blood glucose issues and elevated liver enzymes, 3 types of anemia (iron, B-12 and Folate), and my Vit D was tanked. I have osteoarthritis, hair loss, blah blah blah

But those complications are pretty much resolved (except for the OA, of course--that's for life, I'm afraid) and some lingering nerve pain and bone pain.(which may or may not resolve--no doc can tell me for sure) For intense muscle weakness and wasting --I have worked with a physical therapist 2X a week for the last 2 years). This is an ongoing healing process for me.

I also had food allergy testing done as well. Nothing showed there, yet I cannot eat soy (which is fine, because I do not care for it) or too much dairy.(which is not fine because I love ice cream and cheese) :D.

So, one day I asked my GI doc point blank,"so, what the hell is going on-if it's none of those things? What's wrong with me? Why aren't I like other celacs who are all better in 6 months or a year"? and he said

"Nothing is going on. You're healing. Every year is a healing year."

I did not really like that answer, as I would have preferred,"It's THIS______ and here is how we fix it !! Take this _______"

That did not happen. :( No magic pills.

So, we all push on. Sometimes, the day goes on without a hitch and sometimes, I have wicked muscle/joint/bone burning pain.

It does not mean I have been glutened.

It just means I am not "there yet". But I'll get there and so will you.

That's my perspective anyway, FWIW

Hang in there, hon.

.

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It does not mean I have been glutened. It just means I am not "there yet". But I'll get there and so will you. That's my perspective anyway, FWIW Hang in there, hon. .

Some days, all you can do is feel like the 5 year old in the back seat asking "are we there yet?!?!?!"

The answer is always no, but as long as the car keeps moving at least you know you're getting closer.

And some days you whine and cry because being stuck in the back seat, along for the ride and nothing you can do to get there faster sucks.

We're all here, because we aren't there. But at least we're all sharing the back seat together. Now would you please stop touching my side. MOOOOOOOOOOOM!!!!!!! :P

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Some days, all you can do is feel like the 5 year old in the back seat asking "are we there yet?!?!?!"

The answer is always no, but as long as the car keeps moving at least you know you're getting closer.

And some days you whine and cry because being stuck in the back seat, along for the ride and nothing you can do to get there faster sucks.

We're all here, because we aren't there. But at least we're all sharing the back seat together. Now would you please stop touching my side. MOOOOOOOOOOOM!!!!!!! :P

Exactly!

Time - never thought it would take so much time to heal - luckily most folks heal more quickly than I.

Hope you are feeling better - drink lots of water and do keep a log - sometimes you will find a pattern - sometimes you'll find hidden gluten and other times it is just a one off.

Hang in there - it does get better :)

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Thank you all so much for the help. Your kind words mean so much to me. Sometimes I read on here that people feel great in like 2 weeks and I am struggling so I get frustrated. It hard for me as I am sure it is for all of you to think back to when you didn't have this. I would be out jogging or hiking or shopping all day etc. Some days all I have in me is to take a shower and sit and sew or read. It makes me sad to think of life like this now. It could be sooooooooo much worse though so I am thankful for that. I am thankful for people like all of you that help me get through the day.

So thanks! - MO

Irish, I have elevated liver enzymes too and I am going to get rechecked for those in a few weeks at the gastro. Do you have any idea why we get this?

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I too had elevated liver enzymes at diagnosis - they improved at each draw after removing gluten - 3mo, 6mo and at a year mine were perfect and have stayed there for nearly three years.

Celiac is taxing on many systems - the digestive organs all have to work much harder. Elevated liver enzmes is quite common for us.

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Ski pretty much answered your question for me (she knew I was off getting my neck and back adjusted at the chiropractor......and thank YOU very much, celiac <_< )

:D ah, it's a blast, isn't it? and I was always the one in the middle of the back seat, since I was the baby of the family, swooning with car sickness and balancing my feet on the "hump" that used to be in floor of the back seats of most cars. (yeah, that's right---I'm old)

Mo, sweetie

elevated liver enzymes are really nothing to concern yourself with as this is often an inflammatory response in many autoimmune diseases.

In most cases, they are only mildly and temporarily elevated and are not a sign of a chronic, serious liver problem.

They'll come back down in time.

Inflammation does a bunch of weird things to our organs, blood, muscles and bones.

But, as we heal, and the inflammatory process subsides, many issues resolve.

Hang tough.

Addy! roll the window down, please. I need some air!!!!!!!!

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Oh yeah, your body will do all sorts of idiotic things that will make you :blink: or :huh: but most of the time I find it isn't particularly alarming.

Our car had a hump in the middle too. I had the sense to only have one sibling though. :P Oh, and to be the oldest.

I would put the window down but your leg was touching my leg. Besides, I don't like the way the wind blows my hair in my face. I could just blow on you, then you'll have air.

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. I could just blow on you, then you'll have air.

...depends....whatdja have for lunch??

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Well, my doctors nurse (not gastro) freaked the hell out over the liver enzymes so it scared me. This is the same dr. that gave me the ibs diagnosis and sent me out the door with antidepressants despite the fact that I have raging DH, migraines, joint and muscle pain, night sweats and low grade fevers while eating gluten.

Thanks for the advice I am seeing that the elevated enzymes is common among us.

Oh and I have terrible bladder issues from celiac and that same dr. said "well your urine showed no infection so you are fine"

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I was the healthiest sick person many doctors in many disciplines met for nearly three decades....the first symptoms I approached a doctor with at 18 were the same ones I had at diagnosis - just to a far worse degree.

since all the tests they chose to run were normal it must have all been in my head --- right? :(

wrong --- it was all in my gut -- at least we know better now :)

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I was the healthiest sick person many doctors in many disciplines met for nearly three decades....the first symptoms I approached a doctor with at 18 were the same ones I had at diagnosis - just to a far worse degree.

since all the tests they chose to run were normal it must have all been in my head --- right? :(

wrong --- it was all in my gut -- at least we know better now :)

......nodding my head in total agreement.....

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...depends....whatdja have for lunch??

spam :ph34r: look... some days are just those kinds of days.

I was the healthiest sick person many doctors in many disciplines met for nearly three decades....the first symptoms I approached a doctor with at 18 were the same ones I had at diagnosis - just to a far worse degree. since all the tests they chose to run were normal it must have all been in my head --- right? :( wrong --- it was all in my gut -- at least we know better now :)

Isn't that the best? Being referred to a shrink was one of my favorite highlights. <_< It is so reassuring know to know we aren't crazy. Well, not that kind of crazy. :D

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Isn't that the best? Being referred to a shrink was one of my favorite highlights. <_< It is so reassuring know to know we aren't crazy. Well, not that kind of crazy. :D

Got that right! We are crazy fun - not crazy - I refused antidepressants the first 10 or so times they were offered - finally gave in when my youngest was 3 - took them for a few weeks and was so angry I almost hit one of my kids - I have never ever wanted to strike a child - went off them cold turkey against doctors orders. Brain had zappy electrical feelings for about a month but soon I was back to my "normal" self - too many AI symptoms to count, but stayed away from docs for about 4 years except for annual paps.

For anyone reading along - if docs tell you it's all in your head or maybe you are hormonal, stressed, overworked and it does not ring true to you - run away. My sister has battled major depressive order her entire life - she has ALWAYS known she was depressed. Meds are a life saver when they are needed - but they are not needed for celiac disease.

Ok hopping off soapbox ;)

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I had a similarly awful experience with antidepressants. This is long before I was referred to a shrink though. After a truly awful string of events, I was suffering from very real depression. Instead of delving into what was causing it, the doctor immediately put me on Zoloft. (What I needed was therapy.) I didn't end up getting angry, quite the opposite in fact. I stopped being depressed. I stopped feeling anything at all, I wasn't sad, happy, angry, I simply didn't feel. I wasn't even scared about the fact that I didn't have emotions any more. I stopped taking the medication immediately, cancelled my follow up appointment and was back to my old self in no time.

I will say that I was in fact suffering from very real depression at the time. But meds weren't the answer (for me), I had life issues, it was temporary and I needed to learn to deal with it. Once I did deal with it, I was fine. If you need meds, I don't think they're evil. I just think that recommending someone with life problems and medical problems to be medicated into oblivion is irresponsible medicine. We aren't crazy, we're celiacs. We just need a doctor to listen to us and test us, not shoo us out the door like nutjobs.

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I had a similarly awful experience with antidepressants. This is long before I was referred to a shrink though. After a truly awful string of events, I was suffering from very real depression. Instead of delving into what was causing it, the doctor immediately put me on Zoloft. (What I needed was therapy.) I didn't end up getting angry, quite the opposite in fact. I stopped being depressed. I stopped feeling anything at all, I wasn't sad, happy, angry, I simply didn't feel. I wasn't even scared about the fact that I didn't have emotions any more. I stopped taking the medication immediately, cancelled my follow up appointment and was back to my old self in no time.

I will say that I was in fact suffering from very real depression at the time. But meds weren't the answer (for me), I had life issues, it was temporary and I needed to learn to deal with it. Once I did deal with it, I was fine. If you need meds, I don't think they're evil. I just think that recommending someone with life problems and medical problems to be medicated into oblivion is irresponsible medicine. We aren't crazy, we're celiacs. We just need a doctor to listen to us and test us, not shoo us out the door like nutjobs.

the thing that got my wife to really figure out her disease was that she was suicidal. I told her this wasn't her, she wasnt crazy, there was something physically going on with her. Turns out when you don't absorb nutrients from food you can get kinda bummed out! Go figure :rolleyes:

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the thing that got my wife to really figure out her disease was that she was suicidal. I told her this wasn't her, she wasnt crazy, there was something physically going on with her. Turns out when you don't absorb nutrients from food you can get kinda bummed out! Go figure :rolleyes:

Try telling that to someone who's been bummed most of their life and who doesn't want to try and fix 'who they are' because 'there's nothing wrong with them'. That's my sister and my dad.

Unfortunately for me I didn't have any idea what celiac disease was or that I could have it until got abdominal issues that only occured after I tried going on birth control pills.

Right now my main concern is my neuropathy because I need my hands and feet to do pretty much anything, but a close second is my mental state...little motivation, almost always tired I just want to sit down and not have to do anything, have a hard time keeping a constant focus (I space out all the time during conversations, miss things in movies and shows, going on 2 years of not working) even though I can read/communicate on my own time alright, mood swings, (I thought they'd gone away, ya right). The fact that my bowels are a little loose and I have too many stinky farts is the least of my concerns.

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Do any of you get flu type symptoms when going through a glutening? Not the sore throat stuff but a low grade fever and terrbile muscle pain, weakness and just feel like when after you have had the flu?

I am totally wiped out.

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Maybe you have a light case of the flu? Several versions are going around.

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I don't think so...I get this way when the DH gets going. I also have a zillion bleeding sores on my lips. Maybe it's a DH thing.

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I feel pretty lousy if I get hit, Mo. If your DH is blossoming, maybe you did get CCed.

Drink water, rest up and it will pass soon. Sorry, hon.((hug))

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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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