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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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Zibby

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I have Gastroparesis (paralysis of the stomach) and I refuse to accept that it is idiopathic, meaning there is no identifiable cause, just live with it. For the last year or more I have been taking a combination of 6 medications- 3 types to help go to the bathroom, 1 for upper digestion, 1 for nausea and 1 for GERD. On the evening of Jan 2nd I started reading about gluten and seeing how I had at least 32 of the common symptoms, I decided that evening I would eat gluten-free food. I had an avocado with a little bit of miracle whip. The avocado (which with it's 4g of fiber and 23g of fat) should have made me very sick but surprisingly I had no ill feelings from it at all and I could actually feel my stomach digesting on its own for the first time in a loooong time! I woke up the next morning with a lot of energy and significantly less bloating! I already had a GI appt scheduled for the afternoon of the 3rd to tell the PA that 5 of the medications were not working, so I continued the gluten-free up until the appointment.

I talked to my PA and she was amazed at how great I felt and encouraged me to try the gluten-free diet for one month. We both agreed not to do any tests because the diet is the one sure way to know there's a food intolerance (especially with the chance of testing negative for Celiac and I could still have the intolerance). I did my daunting first gluten-free shopping trip last night. I am starting day 3 and once again, woke up this morning feeling great for the most part. My stomach isn't bloated and I have a lot of energy.

That being said, I ate some potato chips last night (labeled gluten-free) but were high in fat and did have an upset stomach. I'm thinking it was the type of fat used in the chips. Also, I did read about withdrawal headaches on other forums- I had a headache all afternoon yesterday and had to take ibuprofin.

Ironically, the sicker I got over this last year, the more bread and butter I ate. I dramatically increased my carbs/gluten foods because they are considered easier to digest than fats/veggies/fruits/meats/nuts..etc.

Is there a list somewhere of some of the initial negative side-effects of going gluten-free? So far I think it's just been the headache. Any other advice is welcome as well!

Thanks for reading and have a good day! :)

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Yes, I am newly diagnosed too but still having to eat glutin because my biopsey isn't scheduled till Jan 10. Only experiencing very itchy symptoms but have had the blood test and tested VERY positive. I also would be interested in negative side affects from going glutin free on Thursday. I have also craved honey wheat pretzels in the past year & increased my love of all things bread. I soudn like a real addict...lol :)

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Yes, I am newly diagnosed too but still having to eat glutin because my biopsey isn't scheduled till Jan 10. Only experiencing very itchy symptoms but have had the blood test and tested VERY positive. I also would be interested in negative side affects from going glutin free on Thursday. I have also craved honey wheat pretzels in the past year & increased my love of all things bread. I soudn like a real addict...lol :)

Good luck with your biopsy! My GI ruled that out as well because he already did an upper GI and didn't do the biopsy then so they're not going to repeat it. I feel like a real addict too cause I came home from my appt searching for anything to eat that had no gluten and it was very difficult! lol At least you have a positive confirmation with the blood test. :)

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There are a variety of gluten withdrawal symptoms. You may get some, all, or none of them. Moodiness, hunger, brain fog, the headaches of course, and others.

Also, a lot of us feel fantastic at first, then have a bit of a relapse. I know I did. After two weeks I felt better than I had in my life. Then I started feeling tired all the time and ran into other problems. I developed intolerances to lots of other things - corn, salicylates, and I was also reacting to pesticide residue on my food. I had to keep it simple for several months. Whole foods only, and strictly organic. It was about a year before I was able to start adding foods back to my diet. Although my energy level still hasn't gotten back to what it was, I am eating a more varied diet now, and other than being tired all the time, I have no symptoms.

And the tired is probably vitamin deficiencies. Haven't found a good vitamin I can take that doesn't have gluten or soy or corn. :angry:

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Hi Zibby,

If you want to go ahead with the the gluten-free diet without testing that's fine. But be sure you can stick with it without a diagnosis. The blood antibody tests are a simple process now, but they are difficult later. All they do is draw a little blood and send it to lab for testing. If you wait until after you are gluten-free, you will have to do a gluten challenge for a while to build up the antibodies again, which can be very unpleasant if you have celiac or NCGI. Reactions are sometimes stronger after being off gluten and restarting it, so it is better to get tested first if you intend to ever get tested.

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I agree with Gee Eff. Just because your doc screwed up and didn't do the biopsy testing, and your PA tells you to go gluten free, is not a reason not to do the blood testing right now!! before the antibodies leave your system. Because once gone, coaxing those little suckers back for testing can be pretty painful :huh:

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GFinDC and Mushroom, thanks for that info. :) The PA gave me the choice of doing the blood test and I chose not to do it. She didn't push it and was fine with just diet modification. If I continue to feel really good on the gluten-free diet, I don't need a blood test to confirm it. I'll just keep doing it. If I was having a much more sever reaction (such as a rash) I'd probably do it. That and laboratory tests cost more money out of pocket with my deductible starting over this new year so it's also not something I want to pay for. It does suck that the biopsy was not taken, despite finding benign polyps. :( My stomach sure feels a lot better though and I hope it continues that way! I can't say 100% I won't slip up but if I do, it was an accident because I'm diabetic and pretty good about reading labels and Googling foods I'm unsure of. Thanks for your responses! :)

Oh and I don't know if this counts but I did have a basic allergy blood test done that included wheat and other common foods, animals, plants. .etc and they were all negative.

Edited by Zibby

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Ahhh, the withdrawl headache... that was a doozey for me. I remember is lasting the better part of a week and it hurt to turn my eyes or change direction. Ouch. On the bright side, that was the last major migraine I've had in 6 months, and I used to get a migraine at least a couple of days each week. :)

I was also extremely grumpy. EXTREMELY. I knew it but I just couldn't shake it. It lasted about 2 weeks. I was more tired too so that probably didn't help.

I also remember being hungrier than before. When I was eating gluten I had to eat every couple of hours or I got the shakes; that has no stopped but I had a really bad case of the munchies that first month or so. It could have been partially psychological as I proved to myself that there was still lots that I could eat.

My stomach pains mostly went away immediately but I still had the occasional issue for a month or two. Now I just get a stomach ache if I eat junk food.

That's all the withdrawl symptoms that I remember...

Congrats on figuring out that gluten is the cause of your problems. I would like to echo what the others said though; if you think you might need a diagnosis in the future, for insurance or testing of vitamin deficiencies or related autoimmune disorders that often pop up, you really should do it now because going back onto gluten for a month or two is often very painful and can cause long term health problems. Celiacs should all have their nutrient levels checked because we are often very low in some key nutrients like D, B12, Ca, K, Ferritin, Fe... would a diagnosis help you to get coverage for that, as well as pay for any extra supplements (some need B shots and special iron supplements) or test needed for deficiencies (like a bone density test if your calcium is low and osteoporosis is setting in which happens often and early in celiacs). Also, many celiacs develop other autoimmune disorders (as you know since you're diabetic), the most common AI disorder being Hashimoto's thyroiditis (hypothyroidism... over 1/10 have it), that you should be checked for. To be properly tested for Hashi's you should get your TSH, Free T4, Free T3, and TPO Ab checked.

I'm done my nag. LOL I wish you the best of luck with the diet, you are off to a great start! :)

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Ahhh, the withdrawl headache... that was a doozey for me. I remember is lasting the better part of a week and it hurt to turn my eyes or change direction. Ouch. On the bright side, that was the last major migraine I've had in 6 months, and I used to get a migraine at least a couple of days each week. :)

I was also extremely grumpy. EXTREMELY. I knew it but I just couldn't shake it. It lasted about 2 weeks. I was more tired too so that probably didn't help.

I also remember being hungrier than before. When I was eating gluten I had to eat every couple of hours or I got the shakes; that has no stopped but I had a really bad case of the munchies that first month or so. It could have been partially psychological as I proved to myself that there was still lots that I could eat.

My stomach pains mostly went away immediately but I still had the occasional issue for a month or two. Now I just get a stomach ache if I eat junk food.

That's all the withdrawl symptoms that I remember...

Congrats on figuring out that gluten is the cause of your problems. I would like to echo what the others said though; if you think you might need a diagnosis in the future, for insurance or testing of vitamin deficiencies or related autoimmune disorders that often pop up, you really should do it now because going back onto gluten for a month or two is often very painful and can cause long term health problems. Celiacs should all have their nutrient levels checked because we are often very low in some key nutrients like D, B12, Ca, K, Ferritin, Fe... would a diagnosis help you to get coverage for that, as well as pay for any extra supplements (some need B shots and special iron supplements) or test needed for deficiencies (like a bone density test if your calcium is low and osteoporosis is setting in which happens often and early in celiacs). Also, many celiacs develop other autoimmune disorders (as you know since you're diabetic), the most common AI disorder being Hashimoto's thyroiditis (hypothyroidism... over 1/10 have it), that you should be checked for. To be properly tested for Hashi's you should get your TSH, Free T4, Free T3, and TPO Ab checked.

I'm done my nag. LOL I wish you the best of luck with the diet, you are off to a great start! :)

Hi nvsmom, thank you for the great info as well! :) I did have nutrients tests done and only came up deficient in vitamin D (which apparently is very common). All other vitamin levels were good. I do have hypothyroidism (not Hashimotos though, that came out negative) as well as the diabetes (moreso borderline). Why I was not tested early on for Celiac is beyond me. I've had go through a lot of complaining and junk tests and irrelevant specialists before getting each diagnosis. I'm also lactose intolerant as well. Fun!

I guess I should consider myself lucky that the only side effect so far is the headache (thank God not a migraine!). So sorry you went through all that! :( I really hope my symptoms don't get worse.

Thank you so much all for the support and the advice!

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Sublingual tablets in vitamin are absorbed well by celiacs because it is absorbed from the mouth rather than the intestines. I too was only low in vitamin D and I figure that goes with being Canadian... The sun sets shortly after 4:00pm now a days. ;)

Did they determine what is the cause of your hypothyroidism? I ask because I barely tested positive for it; my TPO Ab was high but still in the normal range... I called myself Hashi's before my doctor would commit to a label. LOL :rolleyes:

Lactose intolerant too, eh? That is very common around here. I'm 6 months gluten-free and still can't tolerate milk.

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Sublingual tablets in vitamin are absorbed well by celiacs because it is absorbed from the mouth rather than the intestines. I too was only low in vitamin D and I figure that goes with being Canadian... The sun sets shortly after 4:00pm now a days. ;)

Did they determine what is the cause of your hypothyroidism? I ask because I barely tested positive for it; my TPO Ab was high but still in the normal range... I called myself Hashi's before my doctor would commit to a label. LOL :rolleyes:

Lactose intolerant too, eh? That is very common around here. I'm 6 months gluten-free and still can't tolerate milk.

Ooo thanks! Do you have any recommendations for the sublingual tablets? I looked on Amazon briefly but mainly saw B12 and D1000. I am eating gummy vitamins (gluten-free) cause I hate swallowing the large ones. Sublingual would be awesome but then again, do they come in multi or just individual supplements?

Do you know what your TSH was at the time of diagnosis? I've been tested by a couple of endocrinologists but they haven't been able to identify the type of hypo. Maybe being medicated and stable makes that harder to determine? I got diagnosed around 2002 I think. It took a long time to even get that diagnosis because I was extremely exhausted and it wasn't until I was slurring my words, could barely talk, think or lift my head that I got a positive blood test. The acceptable ranges are too high! The range was between 1-5 and so even though I was at like 4 or so, I was still within range. My comfort level is a 2! My levels started going up and down for a bit til about 2 years ago when a Dr put me on Tirosint, a gel capsule form of Levothyroxine for better absorption and it has been stable ever since. :) Hmm evidence of malabsorption?

As far as diagnoses.. I have a lot. lol Nothing debilitating thankfully! Has anybody's thyroid conditions improved with eating gluten-free? Diabetes? I'm thinking that since it's still possible to eat poorly and eat gluten-free, a total diet change would still be necessary for improved blood sugars. I control mine with diet and hope to keep it that way! I'm wondering though if that means I would need to get rechecked to make sure the change in diet doesn't alter my thyroid levels.

Lactose.. oh lactose. What a pain in the rear! I have been drinking Lactaid for years and occasionally torture myself with ice cream, in which my upper stomach blows up like a balloon. I tried drinking almond milk for a while but the taste just isn't right for cooking so I switched back.

I grew up in Washington state and it seemed rare to see the sun. lol Now it's just because I don't go outdoor much at all. Though it is currently cold winter for both of us. :)

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Ooo thanks! Do you have any recommendations for the sublingual tablets? I looked on Amazon briefly but mainly saw B12 and D1000. I am eating gummy vitamins (gluten-free) cause I hate swallowing the large ones. Sublingual would be awesome but then again, do they come in multi or just individual supplements?

Do you know what your TSH was at the time of diagnosis? I've been tested by a couple of endocrinologists but they haven't been able to identify the type of hypo. Maybe being medicated and stable makes that harder to determine? I got diagnosed around 2002 I think. It took a long time to even get that diagnosis because I was extremely exhausted and it wasn't until I was slurring my words, could barely talk, think or lift my head that I got a positive blood test. The acceptable ranges are too high! The range was between 1-5 and so even though I was at like 4 or so, I was still within range. My comfort level is a 2! My levels started going up and down for a bit til about 2 years ago when a Dr put me on Tirosint, a gel capsule form of Levothyroxine for better absorption and it has been stable ever since. :) Hmm evidence of malabsorption?

As far as diagnoses.. I have a lot. lol Nothing debilitating thankfully! Has anybody's thyroid conditions improved with eating gluten-free? Diabetes? I'm thinking that since it's still possible to eat poorly and eat gluten-free, a total diet change would still be necessary for improved blood sugars. I control mine with diet and hope to keep it that way! I'm wondering though if that means I would need to get rechecked to make sure the change in diet doesn't alter my thyroid levels.

Getting your thyroid levels rechecked every few months as you heal is a good idea!

And I recommend coconut milk for baking. It has a nice light flavour. Yum.

Lactose.. oh lactose. What a pain in the rear! I have been drinking Lactaid for years and occasionally torture myself with ice cream, in which my upper stomach blows up like a balloon. I tried drinking almond milk for a while but the taste just isn't right for cooking so I switched back.

I grew up in Washington state and it seemed rare to see the sun. lol Now it's just because I don't go outdoor much at all. Though it is currently cold winter for both of us. :)

We use SISU vit D 1000IU; it's D3. It comes in a small blue glass bottle. I take 2 to 4 a day and my kids take 1 or 2. They also come in 400IU but we were all borderline low with that. They are tiny like baby aspirins, and disolve in seconds. I also get Life brand one from Shoppers Drug Mart (Canada) that are bigger tablets but have a chocolate flavour. Yum.

When my Hashi's was diagnosed, my TSH was in the mid teens; I can't remember what exactly. I am almost sure that I've been hypo for 10-15 years though. In about 1996, I started having sudden, and painful joint problems that I thought could be arthritis. My doctor tested my TSH and it was 6 something (our range is 0.2-6.0) and then she restested it and it was about a 5. I don't remember her mentioning this though and only know about it because I stopped blindly trusting doctors and got my past records. She also found a positive ANA and negative RF but all she told me was that I did not have arthritis but I probably would one day and to come back if my joint problems didn't go away... Of course they did. :rolleyes:

I also had my TSH checked about 11 years ago when I was charting my basal body temps and trying to get pregnant with my first. I was worried because my temp rarely hit 97F (it still doesn't) but my TSH at that time was "normal" at just below a 3. I was still having fatigue and joint pain periodically though... And I think I was hypo while i nursed my boys, which may have worked in my favour because I've read that the antibodies in a mother's milk can make babies slightly hypo too.... and my boys were all amazing sleepers!

I don't trust the TSH at all. I would go by symptoms first, and then by free T4 and FT3, and possibly TT4 and TT3. I know my FT4 and TT3 are in the bottom 15% of the normal ranges (most feel best around 75%) and I feel pretty poorly and not properly medicated.... hate doctors.

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