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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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Gemini

Exocrine Pancreatic Insufficiency

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There has been a lot of talk on here about taking digestive enzymes and I found this article on EPI that was very interesting and does a

great job of explaining what happens and who is at risk of developing it.  I use enzymes myself because I knew I had developed this condition from

long undiagnosed Celiac.  There is also a lsiting of other disease states which can cause this.

 

http://www.everydayhealth.com/health-report/exocrine-pancreatic-insufficiency/what-is-epi.aspx

 

If you scroll down to the bottom of the page, it has a link that explains the link between EPI and Celiac Disease. 

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I just had this "discussion" with someone on another G F /celiac site and he was skeptical when I mentioned

there was a connection between pancreatic insufficiency and celiac and that using enzymes after diagnosis could help.

 

I posted the info, but he never came back to say "oh, I see!".  <_<

(too busy trying to find a reason to argue, I suspect) :D

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Now, if we just found out why the pancreas works over-time, and if this leads into diabetes with untreated celiac I would be interested in all of that too.

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Since researching is my way of coping with things, here are several articles I've found very helpful in explaining celiac disease in connection with exocrine pancreatic insufficiency.

 

This is my favorite quote from the first article, "In contrast, decreased production of pancreatic lipase without glandular destruction is associated with Celiac sprue, Crohn’s disease, and Shwachman–Diamond syndrome."  That line can be found under the heading "Causes of lipid maldigestion and malabsorption."  No glandular destruction is definitely a positive  :) 

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3132852/#!po=0.925926

 

Easy interview article that my GI doctor found very helpful with supplementation guidelines for enzyme dosing:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3151413/#!po=7.14286

 

Article that discusses enzyme supplementation is most likely not needed long term for those with EPI and celiac disease:

http://www.ncbi.nlm.nih.gov/pubmed/20458623

 

Great chart that shows appropriate steps if enzyme supplementation isn't working:

http://ueg.sagepub.com/content/early/2013/02/07/2050640613476500/F1.expansion.html

 

Case study on celiac disease and EPI:

http://www.ncbi.nlm.nih.gov/pubmed/3684405

 

Treating EPI:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3831207/

 

Italian study with a section devoted to celiac disease:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3848141/  

I also liked this statement in the above article, "Enzyme replacement therapy might have an impact on glucose metabolism since it can reduce the insulin requirement and contribute to improved control of the glucose metabolism, but the evidence is contradictory as improvement of glucose metabolism was not seen in all studies."  It may be contradictory, but that makes sense to me!  

 

Other important info from the above article...seems all that money I've spent for coconut oil since it's a medium chain triglyceride may not have been the best spent, but this also explains why I feel better on a low fiber diet despite all the health claims that high fiber is the way to go.  

 

This is under the "Dietary and Drug Recommendation" section.  "Medium-chain triglycerides (MCTs) have not been shown to be effective in patients suffering from chronic pancreatitis with EPI. Moreover, their poor palatability and high cost reduce patient compliance. Evidence exists that MCTs also require enzyme supplements for proper digestion and absorption[29]. They should be used only in patients with persistence of symptoms or weight loss despite adequate enzyme supplementation[30]. Medium-chain triglycerides have been proposed in PERT non-responders as an “ultima ratio”. The quantity of energy administered by MCTs is limited (ca 8.3 kcal/g) and the dose must be increased slowly in order to achieve intestinal adaptation, even when using enteral nutrition[31]. However, trials have shown no advantage between a normal balanced diet and MCT-enriched preparations[29,32,33].

A diet rich in fiber content is contraindicated because the fibrous material will interfere with proteolytic and amylolytic enzyme activity; lipolytic activity is most affected[30,34], whereas enzymes contained in gastroprotected minimicrospheres can be assumed also with food having a pH less than 5.5. Acid-suppressing agents should be utilized only in patients who continue to experience symptoms of maldigestion despite the adequate administration of PERT[35].

 

After reading all these studies, it does make me think that there if EPI were treated in those with celiac disease, how many people would not have gone on to being diagnosed with diabetes after their celiac disease diagnosis?  I think testing for EPI after getting a celiac disease diagnosis should be a routine screening.  Just my thoughts  :)

 

Now, if we just found out why the pancreas works over-time, and if this leads into diabetes with untreated celiac I would be interested in all of that too.

 

I think the pancreas is working overtime because for years it has been trying to release enzymes to digest gluten, and it keeps releasing more and more enzymes in the hopes it will break the protein down, but it never succeeds.  I think that overuse causes burnout.

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I have severe pancreatic insufficiency. I've had several stool tests done and they've all come back showing "completely undetectable levels of digestive enzymes". So by the sounds of it my pancreas has basically retired (although I don't seem to have an insulin problem).
I'm prescribed Creon to take with everything I eat, which has lipase, protease and amylase.

The GI doctors I've seen have all said that my EPI is down to my Crohn's disease, and is nothing to do with my Coeliac Disease...but by the looks of things it could be caused by either :S

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You are very thorough in your research, positive thinking!  :)

 

I usually read anatomy related books that explain the function of organs to find the information I am looking for.  When it became obvious that I was not absorbing fats, I looked into the possible causes and from what I have read, your pancreas may become atrophied because your small intestine can no longer send out the signals for enzymes, due to destruction of the villi. The pancreas is not being used so tissue atrophies, the same as what happens to muscle tissue.  Most of the time, you get that back when your small intestine heals on the gluten-free diet.  Sort of like lactose intolerance. I do not think there is destruction of the pancreas from Celiac but a malfunction.  Type 1 diabetes usually occurs because the autoimmune system attacks the Islets of Langerhans directly and this is where insulin is produced.

 

I still have trouble sometimes, depending on what I am eating, so use digestive enzymes when needed.....which isn't nearly as often as when I was healing but I still need it for a heaftier, fattier meal.  I was never tested for pancreatic insufficiency but sometimes, when the sympotoms are in your face, and the enzymes work well, you don't need to.

 

Off to read some of this information......thanks for posting this!

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Thanks for posting this and all the links.  Does anyone have comments on comparison of prescription and over the counter enzymes?

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I have had good results (when using enzymes for my family) while using either prescription or over the counter enzymes.  My son has a prescription for Pancreaze.  This helped his growth to come back after he battled parasites.  He also is measuring 0 enzymes by stool test.  These are costing 104 dollars for a 4 month supply. I will post a link for this if I find one.  http://www.pancreaze.net/about

 

I have been using Genuine N zimes Dr. Howell's Original Formula Extra-Strength Degestive Enzyme Supplement.  I get 4 oz of this powder and it lasts me a couple of months at the rate of 1/4 tsp per meal.  The cost for this is 30 dollars a 4 oz canister.  I like that it is not a capsule, I feel it is more likely my body can always get it. The contents is Amylase, Protease, lipase and cellulose.  I looked into how the cellulose is derived before, but I don't remember.  I just know that I am using it successfully in spite of my many food intolerances.

 

I have found both the prescription and several health food store varieties work adequately   I recently discovered that (Even with insurance) I am paying more for the prescription enzymes, so I don't think I will bother with the prescription any more when I run out.  It could be an advantage if prescriptions can be paid with a health account.

 

Dee

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I agree that if the symptoms are in your face, just go with it  :)  I don't match up with the main symptom for EPI of unexplained weight loss, my main one is bloating.  Symptoms I've now determined are related...stool leaving streaks in the toilet bowl, undigested nuts and other food in stool, hard to wipe and stool sometimes floating though more often for me it does sink.  

 

It was determined after ruling out other causes that my EPI is all celiac related, so I was prescribed Creon.  My hope is that I follow my doctor's directions by eating a high fat diet while taking Creon, and that in a few months my body will remember how to digest food correctly!!

 

 

 

I still have trouble sometimes, depending on what I am eating, so use digestive enzymes when needed.....which isn't nearly as often as when I was healing but I still need it for a heaftier, fattier meal.  I was never tested for pancreatic insufficiency but sometimes, when the sympotoms are in your face, and the enzymes work well, you don't need to.

 

Off to read some of this information......thanks for posting this!

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I don't think having what would appear to be undigested nuts in your stool as a symptom of pancreatic insufficiency.  Nuts generally are not broken down completely because they are rich in fiber and hard to digest.  Your body will extract the nutrients out of them but the 'shell' will remain intact. Corn and peas are another example of this. The same thing happens to me but I do not view that as a problem.  Of course, if a lot of your food presents as undigested or whole on exit, that is something to be concerned about but not for things like nuts, seeds, corn and peas.

 

I am not sure I understand why you would be instructed to eat a high fat diet, along with your digestive enzymes.  I just stayed away from, and still do, those fats that bother me still. Those are the ones people should eat very seldom anyway...saturated fats.  I am fine with olive oil, butter in small quantities and even fried food, if it is done correctly at the right temperature so the oil doesn't saturate into the food.  Lower fat meats are good but I cannot digest lamb, period.  Not too hard to omit that from my diet anyway. Nuts and seeds I don't have a problem with.  I figured the longer I was gluten-free, I would heal and then just stay away from foods that are too heavy for my gut.  I only use the enzymes about 30 % of the time now, compared to all the time when first diagnosed.

 

I would not worry about this at all and continue taking your enzymes and heal.  It does take awhile for all this to happen, as you well know.  I was older, too, at diagnosis and have done fine.  So will you.  There may end up being foods that will never agree with you but that's OK.  I think that is just the norm for Celiac's anyway.

 

 

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Although they are super convenient, the GI said EPI explains why I have a problem with KIND bars and nuts in general.  Since they are so high in fat and fiber, it was rough on my body and instead of a few pieces, pretty much the whole bar was in the toilet   :(  

 

I had found a lot of conflicting information about high fat vs. low fat diet for those with EPI, and I know this was one of the articles he read which is why he instructed me to eat high fat: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3151413/#!po=7.14286

 

"Classically, patients with pancreatic exocrine insufficiency were instructed to restrict fat intake in an attempt to reduce steatorrhea. A diet containing less than 20 g of fat daily was generally recommended. However, restriction of fat intake is linked to insufficient intake of fat-soluble vitamins (which are already malabsorbed in patients with pancreatic exocrine insufficiency) and malnutrition. As a consequence, fat restriction is no longer considered necessary in the management of patients with pancreatic exocrine insufficiency. In addition, efficacy of enzyme substitution therapy has been shown to be superior when enzymes are administered together with a high-fat diet compared to a low-fat diet."

 
I just had my health screening for work, and found out my total cholesterol (145), LDL cholesterol (wouldn't register on the screener because it was so low) and triglycerides (registered on equipment that level is <45) are still low.  Thankfully my HDL is at a 57.  If there is one value that is good not to have low, it's that one  :)  Last year I thought these numbers were great, but the problem was I wasn't on statins and I was not restricting fat or carbs, so these numbers should have been a red flag.  Live and learn  :)
 
Any type of fat...send my way!!  I went to Whole Foods and bought a large selection of oils, and I also have steak in my freezer.
 
Gemini, I completely agree that it takes time, so I just have to keep moving forward :)
 

I don't think having what would appear to be undigested nuts in your stool as a symptom of pancreatic insufficiency.  Nuts generally are not broken down completely because they are rich in fiber and hard to digest.  Your body will extract the nutrients out of them but the 'shell' will remain intact. Corn and peas are another example of this. The same thing happens to me but I do not view that as a problem.  Of course, if a lot of your food presents as undigested or whole on exit, that is something to be concerned about but not for things like nuts, seeds, corn and peas.

 

I am not sure I understand why you would be instructed to eat a high fat diet, along with your digestive enzymes.  I just stayed away from, and still do, those fats that bother me still. Those are the ones people should eat very seldom anyway...saturated fats.  I am fine with olive oil, butter in small quantities and even fried food, if it is done correctly at the right temperature so the oil doesn't saturate into the food.  Lower fat meats are good but I cannot digest lamb, period.  Not too hard to omit that from my diet anyway. Nuts and seeds I don't have a problem with.  I figured the longer I was gluten-free, I would heal and then just stay away from foods that are too heavy for my gut.  I only use the enzymes about 30 % of the time now, compared to all the time when first diagnosed.

 

I would not worry about this at all and continue taking your enzymes and heal.  It does take awhile for all this to happen, as you well know.  I was older, too, at diagnosis and have done fine.  So will you.  There may end up being foods that will never agree with you but that's OK.  I think that is just the norm for Celiac's anyway.

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Wanted to add this PubMed abstract I found.  I couldn't access the full text, but it seems more light is being shed between celiac and its connection to pancreatic insufficiency.

 

http://www.ncbi.nlm.nih.gov/pubmed/25417707

i also read the link on this page saying that supplemental enzymes may or may not be a permanent thing - i'm afraid to try to eat without them lolz :D

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i also read the link on this page saying that supplemental enzymes may or may not be a permanent thing - i'm afraid to try to eat without them lolz :D

 

I ended up being able to go off Creon about two months ago because my elastase testing went from 72 (indicated severe pancreatic insufficiency) up to a 414 (anything over 200 was considered normal), and things had been going really well!  Unfortunately I got glutened sometime last week...can't pinpoint it, and I'm still feeling the effects.  I ended up taking the day off work, which I never do, to just rest.  I know it will pass, but I can't believe I used to think feeling this way all the time was normal.

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I ended up being able to go off Creon about two months ago because my elastase testing went from 72 (indicated severe pancreatic insufficiency) up to a 414 (anything over 200 was considered normal), and things had been going really well!  Unfortunately I got glutened sometime last week...can't pinpoint it, and I'm still feeling the effects.  I ended up taking the day off work, which I never do, to just rest.  I know it will pass, but I can't believe I used to think feeling this way all the time was normal.

I know...isn't it bizarre that what you thought was normal was actually a serious illness?  I have a few years that I don't remember much about because I was so out of it.

 

The good news is that as time goes on and you heal more and more, recovery from a glutening happens much quicker.  I am at the 9 1/2 year mark gluten free and I usually am over a glutening after 3 days. I am getting really good at avoiding taking a hit but when it happens, I am not nearly as debilitated as I used to get.  Never a picnic but much better!

 

Hope you feel better soon!

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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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