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      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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kaitlynrose

What Is The Severity Of Your Reaction To Gluten?

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Hello, I'm new to this site :)

I am 17 years old, and have been gluten-free for a little over 2 years (wow, I didn't realize it has been this long). I have a younger cousin, 3 years my junior, who has Celiac and Juvenile Insulin-Dependent Diabetes. She has been gluten-free for about 5 years now. When she eats gluten, she doesn't get sick at all (in fact, she cheats all the time. *jealousy* :/ ). However, when I slip up, I am ridden with crippling pain, and do not feel better for atleast 6 hours. My reaction has always seemed very severe, and I was wondering, how bad are your reactions?

Kaitlyn

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Hello, I'm new to this site :)

I am 17 years old, and have been gluten-free for a little over 2 years (wow, I didn't realize it has been this long). I have a younger cousin, 3 years my junior, who has Celiac and Juvenile Insulin-Dependent Diabetes. She has been gluten-free for about 5 years now. When she eats gluten, she doesn't get sick at all (in fact, she cheats all the time. *jealousy* :/ ). However, when I slip up, I am ridden with crippling pain, and do not feel better for atleast 6 hours. My reaction has always seemed very severe, and I was wondering, how bad are your reactions?

Kaitlyn

I am two months past eatting gluten. My reactions seem to be getting "more defined." When I was eating gluten I would just feel so tired all of the time. I couldn't tell I was reacting at all. However, about 4 days after going gluten free I started realizing my body's opionion of gluten. I react to gluten in the air or cross contamination. My first reactions were mostly dizziness and fatigue. Some reactions I experienced diarhea and nausea. Lately I have felt like glands are swelling in my neck, coughing, or horseness. I also notice swelling in my abdomen and legs, but I can never pin point when the contamination occured. Most of my symptoms are fleeting, I notice them and they are gone. They do seem to be getting more severe.

I hope you do not learn to cheat as your cousin does. Eat well and be careful. Your body will appreciate it! It is not much fun to disappoint your body. :angry:

I am glad you found out young and wish you the best.

Diana

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My niece is a diabetic coeliac: she cheats: she spends a lot of time in hospital.

My eldest is a symptomatic coeliac - reacts almost to a whiff of the stuff: her sister is an asymptomatic coeliac - no external reaction at all. As their gastroenterologist pointed out, looking at their biopsies, the external reaction [or lack thereof] is one thing: the most important thing is the internal damage - and that is the same for both, regardless of symptoms/no symptoms ..

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Welcome! I've been gluten free for almost a year. With cross contamination I get stomach gurgles and a lot of gas... it puts me in such extreme discomfort. My mom tries telling me it's normal to get gas and I'm like, 2-3 hours worth of constant burps and painful bloating? Eh not so normal.

A few times when I think I was legitimately glutened I got REALLY tired. I never take naps and if I do they're 20-30 mins. After gluten exposure I'm out for about 2.5 hours. Luckily I usually feel better when I wake up.

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Vomiting within three hours. Panicky and light headed.

richard

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I've been off gluten for four years now and my reaction to gluten now is the same as it was then. Mine is like a week long cycle that seems like forever to get through. My stomach hurts almost immediately after eating it and depending on how much I eat I might throw-up. Then my insides will proceed to hurt for about two to three days. Because of this stomach pain I have a very difficult time sleeping and I'm tired all the time no matter how much I sleep. I get cramps in my muscles and all of my limbs ache. I get rashes on my legs and sometimes my arms and I'm extremely moody and irritable to the point where I have to lock myself away just to get through my day without screaming at anyone.

My younger brother also has celiac and his reaction doesn't make him nearly as sick as I get. He cheats often to and isn't all that careful when it comes to cross contamination. But I don't care. I feel better when I am not sick with gluten. His insides rip themselves apart just like mine do, and I'm actually thankful I have a reaction because it makes it easier not to cheat. Maybe if he got as sick as I do he wouldn't cheat. But he's a grown man. He can do what he likes.

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I'll have been gluten free for a year in Septemeber. When I have gluten my reaction occurs within 10 minutes of eating the stuff and I'm in severe pain for at least 3 days. I'm crabby and irritable because of how uncomfortable I am. I wish I could just take a nap and escape the discomfort for a few hours but the pain is so intense that it makes it nearly impossible to fall asleep no matter how tired I am...

I only eat certified gluten free food that's made in a dedicated gluten-free facility so I have no idea how I am with cross contamination, but with every other aspect of ingesting gluten I am super sensitive. I am hoping that with time my reaction wont be so bad, but I have heard mixed experiences where the pain subsides for some or stays just the same for others......

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I'll have been gluten free for a year in Septemeber. When I have gluten my reaction occurs within 10 minutes of eating the stuff and I'm in severe pain for at least 3 days. I'm crabby and irritable because of how uncomfortable I am. I wish I could just take a nap and escape the discomfort for a few hours but the pain is so intense that it makes it nearly impossible to fall asleep no matter how tired I am...

I only eat certified gluten free food that's made in a dedicated gluten-free facility so I have no idea how I am with cross contamination, but with every other aspect of ingesting gluten I am super sensitive. I am hoping that with time my reaction wont be so bad, but I have heard mixed experiences where the pain subsides for some or stays just the same for others......

My symptoms increased in severity for 5 year until my boyfriend forced me into a gluten-free diet, which was the catalyst for my diagnosis. After only one day into a gluten free diet I had completely stopped vomiting, which was mind blowing. Now 2 years into being gluten free I rarely get "glutenized" but when I do the result is devastating. The last time I checked my reaction (a year ago) I ate half a frosted mini-wheat and within 9 mins I was down n out. First I start to get uncomfortable, my stomach becomes distended and I become unable to go to the bathroom. Its as if my entire digestive tract shuts down. I become very awkward about bending my abdomen or anyone coming into contact with it. Then vomiting which persists long after my stomach is empty. Accompanied by on and off again cramping and pain in my trunk region. After a night of drinking tainted margaritas in Hawaii last year I spent 8 hrs in the hotel shower vomiting, crying and passing out. I was sick for around 18 hrs and lost 2 days of vacation. I have not gotten sick from hidden gluten for 6 months!

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Hello, I'm new to this site :)

I am 17 years old, and have been gluten-free for a little over 2 years (wow, I didn't realize it has been this long). I have a younger cousin, 3 years my junior, who has Celiac and Juvenile Insulin-Dependent Diabetes. She has been gluten-free for about 5 years now. When she eats gluten, she doesn't get sick at all (in fact, she cheats all the time. *jealousy* :/ ). However, when I slip up, I am ridden with crippling pain, and do not feel better for atleast 6 hours. My reaction has always seemed very severe, and I was wondering, how bad are your reactions?

Kaitlyn

I'm 14 and have been gluten free since I was 22 months old. I have diarrhea and depending on the amount I eat pretty severe vomitting. And overall, I just feel terrible after eating it.

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Not diagnosed (yet, bloodwork tomorrow) but I know when I eat gluten filled foods I panic, lightheaded, light sensitivity, dizzy, upset stomach, then usually after all thats over I get gasious, stomach rumbling, the normal IBS symptoms.

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Not diagnosed (yet, bloodwork tomorrow) but I know when I eat gluten filled foods I panic, lightheaded, light sensitivity, dizzy, upset stomach, then usually after all thats over I get gasious, stomach rumbling, the normal IBS symptoms.

Good luck with the bloodwork!

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Hi:) I'm new to this site as well as to being gluten intolerant. I am 18 years old (nearing 19 now) and had been complaining for many years about aches, an always upset stomach, and incredible headaches. We thought at first that I was lactose intolerant because I noticed my stomach beginning to hurt immediately after breakfast (I would eat cereal or grits almost every morning) and we thought the dairy was causing the problem. It was in fact my favorite cereal (Frosted MiniWheats). Now that I have been gluten free for around 4 months now, I have noticed that my symptoms are more severe when I do slip up. I become extremely dizzy and my head starts hurting almost immediately. Stomach issues usually take 2-3 days to get rid of. Does anyone know why my symptoms would be getting worse? Is it just because my body isn't used to the gluten anymore..?

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Eh. I'm sick for weeks and then I get sick a lot more often, I can't eat sugar, my digestive track is a mess, and I'm not better again for years. I've never actually eaten gluten afert i was diagnosed, but I know what it was like BEFORE was diagnosed.

B)

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Hi:) I'm new to this site as well as to being gluten intolerant. I am 18 years old (nearing 19 now) and had been complaining for many years about aches, an always upset stomach, and incredible headaches. We thought at first that I was lactose intolerant because I noticed my stomach beginning to hurt immediately after breakfast (I would eat cereal or grits almost every morning) and we thought the dairy was causing the problem. It was in fact my favorite cereal (Frosted MiniWheats). Now that I have been gluten free for around 4 months now, I have noticed that my symptoms are more severe when I do slip up. I become extremely dizzy and my head starts hurting almost immediately. Stomach issues usually take 2-3 days to get rid of. Does anyone know why my symptoms would be getting worse? Is it just because my body isn't used to the gluten anymore..?

Your immune system fights against gluten. When it has been gone from your diet, those little immune system "soldiers" get all rested. Then, when gluten enters your system those well rested "soldiers" can attack with full force. That's why your reactions are stronger now.

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When I get glutened, I typically don't notice anything for at least 5-6 hours, but then it hits. Hard. I get diarrhea, gas, constipation, I'm typically very tired, and achy. I get miserable enough that even though I'm not a diagnosed celiac, I never cheat intentionally. Yes, I occasionally get accidentally glutened, but when I do, I can tell. Yuck. <_<

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I can point to exactly four serious glutenings in my 10-year gluten-free journey. One was very early and I had no reaction. The next was a few years later and I just made it to the bathroom 4 hours after the offending food. Next was a few years ago and I spent several hours trying not to barf and spent the next day on the couch feeling weak and foggy. The last was just a few weeks ago when I ate a Rudi's hot dog bun that was not gluten-free (MY bad in not being more careful reading the bag!). About 2 hours after I ate it I spent the next 3 hours sitting on the john w/ a waste can in my hands as my digestive system completely purged itself from both ends. I've never been that sick!! Since then, I've "gone off" some foods and had to take it really easy for the next day or 2.

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Hi:) I'm new to this site as well as to being gluten intolerant. I am 18 years old (nearing 19 now) and had been complaining for many years about aches, an always upset stomach, and incredible headaches. We thought at first that I was lactose intolerant because I noticed my stomach beginning to hurt immediately after breakfast (I would eat cereal or grits almost every morning) and we thought the dairy was causing the problem. It was in fact my favorite cereal (Frosted MiniWheats). Now that I have been gluten free for around 4 months now, I have noticed that my symptoms are more severe when I do slip up. I become extremely dizzy and my head starts hurting almost immediately. Stomach issues usually take 2-3 days to get rid of. Does anyone know why my symptoms would be getting worse? Is it just because my body isn't used to the gluten anymore..?

This is a late response but in answer to your question, when you are exposed to something so long it can actually weaken your immune system by exhausting it essentially. Once the immune system has a chance to "relax" and build itself up again, it can attack with more force. This is why it may seem as though it is worse than it once was.

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i feel pretty sick and really tired im 16 by the way :)

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16 oh wait Im 17 now my stomach hurts for 5 days and I can't sleep well. I start having horrific arthritis symptoms and I get very tired. Oh and I bloat.

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Had my first obvious (accidental, of course) gluten-related reaction in my life this week. I was diagnosed as a silent celiac and had never felt ill (when I say ill I mean GI issues) until now. Wow - what a change! I began eating a pudding cup and 15 minutes later had an instant migraine, my sinuses became very plugged, I vomited and had D. I re-checked the dumb label and somehow had missed "wheat starch". No clue how I missed that but sadly I did. Symptoms lasted about 48 hours then I developed several canker sores on my lips. That too is unusual for me. Anitihistamines took care of that, thankfully. So, now I know I react badly to gluen after being gluten free for nearly two years. Interesting! In fact, as I mentioned on another thread, I am actually relieved I had a reaction so I know now that I do react so know what to look out for. It can be tough not knowing whether you have been glutened or not, even if you are as strict as you can be!

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Instantly ulcers appear in my mouth, bloating, diarrhea, vomiting, skin rash (sometimes fine rash, sometimes hives), irritability, anxious, brain fog.

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Hello, I'm new to this site smile.gif

I am 17 years old, and have been gluten-free for a little over 2 years (wow, I didn't realize it has been this long). I have a younger cousin, 3 years my junior, who has Celiac and Juvenile Insulin-Dependent Diabetes. She has been gluten-free for about 5 years now. When she eats gluten, she doesn't get sick at all (in fact, she cheats all the time. *jealousy* :/ ). However, when I slip up, I am ridden with crippling pain, and do not feel better for atleast 6 hours. My reaction has always seemed very severe, and I was wondering, how bad are your reactions?

Kaitlyn

Hi Kaitlyn!

I am 22 and have been eating gluten free since August of 2012. My reactions to gluten have gotten slightly more severe since I stopped eatting it. I have had severe cramping and other gastrointestional upsets from gluten my whole life (Though I didn't know what was causing it untill I was 21...). Now in addition to that my throat swells when I eat it :P The pain lasts an hour or so and I have to take an antihistamine for the throat swelling. I am sorry the reaction lasts so long for you! I know how bad that pain can be! :(

- Shayna

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i barely get anything from slight contamination, but if i accidently ingest a noticable amount. I get cankersores, then about 6-24 hrs later i might get some diarrhea, and ill be tired for a few days.

If you do ingest gluten i recommend taking some glutamine, i used it as a training supplement, but it turns out that it helps re-line your intestines and get everything going to the proper speed again.

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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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