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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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DogWalkerNYC

Just Diagnosed 'probably Non-Celiac Gluten Sensitivity'

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Hi, several months ago I joined this forum thinking I had dermatis herpetiformis. I was absolutely miserable. I had many of the gastro symptoms and an incredibly itchy, horrible rash on my arms.

It turned out not to be DH but my gastro problems persisted. But when I ate gluten free, the gastro issues were virtually non-existent. I was not going back to eating gluten just to test, especially since I had read that the tests were unreliable.

My last colonoscopy and endoscopy (August 2012) showed major diverticulosis, among other conditions (including fibroids and a 'simple cyst' on my ovary. My GI guy sent me for a cat scan and ultrasound and both confirmed the above. I also had low vitamin D and iron.

My primary physician wasn't concerned about the vitamin D and iron and all my other doctors (including the 2 radiologists who read the results) told me these are common conditions in a 65 year old (which I am).

My GI guy knows nothing about gluten, or the effects of food on the gut (can you believe!!). In addition to all the other tests he wanted me to have a capsule endoscopy (where you swallow a camera and it takes hundreds of pictures as it goes through your gut).

At that point I decided to switch GI doctors and found one who works with a nutritionist who was trained by one of the top gluten doctors in the country. I saw her several weeks ago (before having the capsule endoscopy) and she put me on a strict gluten-free diet and asked me to keep a food diary of when I eat, what I eat and how I feel.

Under her care I've been feeling great and only have bloating/heartburn issues when I eat too much food, or food that's not 100% gluten-free.

On Monday I had the capsule endoscopy and got the results yesterday: 'Normal small bowel. No evidence of Crohn's disease or Celiac Disease. Probable non-celiac gluten sensitivity. Recommendations: Continue a gluten free diet.'

Can anyone offer me any advice about this probable diagnosis, what it means and how to proceed? In other words, aside from a gluten-free diet, do I have to buy gluten-free toothpaste, cosmetics, etc?

Also, this probable diagnosis was made as a result of my recent endoscopy, colonoscopy, cat scan, ultrasound, capsule endoscopy and symptoms. How accurate do you feel it is? I am not going back on gluten to do further testing.

Sorry for this long post and thanks very much for your help.

Laura

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Hi Laura,

I havebeen through a similar process in the last few months, an have an NCGI diagnosis after negative gene tests, endoscopy and blood work. I lasted 3 weeks on a gluten challenge.

I have taken my response to eating gluten and being gluten-free as the evidence that I will be gluten-free for life.

There is an increasing body of research on NCGI, but at present the advice I have come across is basically gluten-free diet.

I find all the information about celiac useful too. As intolerance has many of the same symptoms as celiac, without the villi damage or raised antibodies, I am keeping a good eye on research.

Lots of us here are NCGI or self diagnosed, so you should get good answers to any questions here.

Good luck :)

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It is really hard to know how valid the testing is when you have been eating a mix of gluten diet and gluten free. I really don't think you can rely on its accuracy under those conditions. It is obvious that you feel better without the gluten, and that is the way you should eat. Does the reason for this really make that much difference???

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Hi Laura,

So if I got this right, your diverticulitits cleared up after going gluten-free? That would be a pretty strong indicator that the gluten-free diet was helping your gut. How about you iron and Vitamin D? Have they improved yet?

And welcome back! :)

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It is really hard to know how valid the testing is when you have been eating a mix of gluten diet and gluten free. I really don't think you can rely on its accuracy under those conditions. It is obvious that you feel better without the gluten, and that is the way you should eat. Does the reason for this really make that much difference???

Hi Mushroom, you're right, I've been very inconsistent. I can't change the past but now that I have been through all this testing which, by the way, thankfully showed no damage to my small intestines, I'm ready to get serious. And yes, the reason does make that much difference because I read that gluten sensitivity (or intolerance) can morph into celiac disease if you have the gene for it to do so. I don't know how accurate that info is but I read it several times on different celiac websites. So first of all I'm trying to find out if that info is correct. If it is, I will ask my doctor to test me for that gene. If that info is not correct (as much of the info out there is) I don't have to be as concerned about every little glutenous crumb. Because I do feel so much better gluten-free I will never go back to my old eating habits. It's like peeling an onion. Every layer tells another story. Thanks for your input.

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Hi Laura,

So if I got this right, your diverticulitits cleared up after going gluten-free? That would be a pretty strong indicator that the gluten-free diet was helping your gut. How about you iron and Vitamin D? Have they improved yet?

And welcome back! :)

Hi GFinDC, thank you so much!! Actually you got it wrong. I never had diverticulitis, I have diverticulosis which, I'm told, does not go away on a gluten-free diet. Once the diverticulosis pockets are formed they're there for life. That's what my gastroenterologist told me. What did go away on a gluten-free diet is the GERD, the bloating, the stomach pain. I was able to breath easier and deeper. My anger went away. My doctor and I are doing an experiment to see if eating gluten-free stops the colon polyps I keep getting. He's such a cool doctor. I had blood work done in August 2012 and that test showed low Vitamin D and iron. It's too soon to redo that test. I was able to stop Prilosec and some other meds my old gastro guy gave me. My primary said to stay on the diet and when I see him next August I'll have blood work done again. Truthfully I'd rather wait and give my body time to heal then rush into more tests at this point.

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Hi Laura,

I havebeen through a similar process in the last few months, an have an NCGI diagnosis after negative gene tests, endoscopy and blood work. I lasted 3 weeks on a gluten challenge.

I have taken my response to eating gluten and being gluten-free as the evidence that I will be gluten-free for life.

There is an increasing body of research on NCGI, but at present the advice I have come across is basically gluten-free diet.

I find all the information about celiac useful too. As intolerance has many of the same symptoms as celiac, without the villi damage or raised antibodies, I am keeping a good eye on research.

Lots of us here are NCGI or self diagnosed, so you should get good answers to any questions here.

Good luck :)

Hi, thanks very much for responding. I am so glad there's a name for us! My concern is whether a sensitivity or intolerance can morph into celiac because I read that it can if you have the gene for it. I just read that online the other day and I don't know what's involved in getting tested. I guess if I found out I had the gene I would be militant about staying on the diet. Right now I'm not. But I just received the results of the capsule endoscopy on Thursday and I glutened myself this weekend as the last hurrah. Tomorrow I'm off to the health food store to get serious. Before I glutened myself tonight I took a Prilosec (really bad).

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Hi Mushroom, you're right, I've been very inconsistent. I can't change the past but now that I have been through all this testing which, by the way, thankfully showed no damage to my small intestines, I'm ready to get serious. And yes, the reason does make that much difference because I read that gluten sensitivity (or intolerance) can morph into celiac disease if you have the gene for it to do so. I don't know how accurate that info is but I read it several times on different celiac websites. So first of all I'm trying to find out if that info is correct. If it is, I will ask my doctor to test me for that gene. If that info is not correct (as much of the info out there is) I don't have to be as concerned about every little glutenous crumb. Because I do feel so much better gluten-free I will never go back to my old eating habits. It's like peeling an onion. Every layer tells another story. Thanks for your input.

My understanding is that if you carry the genetic predisposition for celiac disease it can be triggered at any time by either physical or emotional stress. Now, whether we can reach agreement on which genes are predispositional for celiac disease is another question. Certainly the vast majority of celiacs have either one or both of DQ2 and DQ8. However, there are celiacs out there who carry neither of these genes so it is not an absolute open and closed case. Many have been told they cannot have celiac disease without either of those genes and have learned to their sorrow that this is not correct. Certainly in Europe there is a wider variety of genes recognized as being involved in developing the disease.

My personal feeling is that it is a little bit cavalier to say that I don't have DQ2 or DQ8, and therefore I'm not going to be as stringent with the diet as I would be if I did. I say this from the position of someone who has never been tested for celiac disease or genes, who has other autoimmune diseases, and lived an almost entire lifetime before self-diagnosing what in retrospect was so bleedingly obvious all along, but which I was assured was all in my head. I don't give a hoot any more what any medical professional cares to say about what I do or don't have or what I may or may not get; I only know I will never knowingly eat gluten so long as it is within my control. Really, it was only in 2011 that these 'experts' decided that there was such a thing as non-celiac gluten intolerance, although we had been talking about it on here for years. Who knows what they will be proclaiming five years hence?

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My understanding is that if you carry the genetic predisposition for celiac disease it can be triggered at any time by either physical or emotional stress. Now, whether we can reach agreement on which genes are predispositional for celiac disease is another question. Certainly the vast majority of celiacs have either one or both of DQ2 and DQ8. However, there are celiacs out there who carry neither of these genes so it is not an absolute open and closed case. Many have been told they cannot have celiac disease without either of those genes and have learned to their sorrow that this is not correct. Certainly in Europe there is a wider variety of genes recognized as being involved in developing the disease.

My personal feeling is that it is a little bit cavalier to say that I don't have DQ2 or DQ8, and therefore I'm not going to be as stringent with the diet as I would be if I did. I say this from the position of someone who has never been tested for celiac disease or genes, who has other autoimmune diseases, and lived an almost entire lifetime before self-diagnosing what in retrospect was so bleedingly obvious all along, but which I was assured was all in my head. I don't give a hoot any more what any medical professional cares to say about what I do or don't have or what I may or may not get; I only know I will never knowingly eat gluten so long as it is within my control. Really, it was only in 2011 that these 'experts' decided that there was such a thing as non-celiac gluten intolerance, although we had been talking about it on here for years. Who knows what they will be proclaiming five years hence?

Wow, you are so knowledgeable. This whole thing is new to me. It started with GERD 2 years ago and I just learned about gluten less than a year ago. According to the regular endoscopy and colonoscopy I had in August 2012, and the capsule endoscopy I had last week, there's no damage to my large or small intestines. The fact that I've been inconsistent has no affect on the test results that showed, at this moment, there's no gut damage. I have the pain, bloating and discomfort without the intestinal damage. I'm very lucky and I will not look a gift horse in the mouth.

I was also amazed that they could tell me there's no gut damage from those standard tests. They said the villi was intact. I thought getting an accurate diagnosis of damage was much more involved. I guess these tests are much more accurate than a biopsy, which only takes a bit of tissue. Because these tests looked at the entire large and small intestines.

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I have to comment on the statement made about low Vitamin D and iron being common in a 65 year old.......they are only common in people with bad doctors who are not investigating why

these 2 nutrient levels are low. Aging does not automatically mean nutritional deficiencies. These 2 conditions are common to Celiacs and others with malabsortion problems but most doctors never go there.

I think you definitely need to be gluten free for life and I hope you are feeling a lot better really soon!

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I have to comment on the statement made about low Vitamin D and iron being common in a 65 year old.......they are only common in people with bad doctors who are not investigating why

these 2 nutrient levels are low. Aging does not automatically mean nutritional deficiencies. These 2 conditions are common to Celiacs and others with malabsortion problems but most doctors never go there.

I think you definitely need to be gluten free for life and I hope you are feeling a lot better really soon!

Thank you! I just read that PPI's like Prilosec cause malabsorption issues and I've been on 2 Prilosec a day for 2 years! Some of the people mentioned deficiencies in Vitamin D and iron. Yikes!! I was able to stop the Prilosec in January due to the gluten-free diet, and a supplement I bought called Heartburn Stop by Renew Life. It's gluten free herbs and minerals that work just as well as Prilosec. I go to my primary for my yearly check up around August, and I bet those tests will be way different than last years.

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You may not need that Heartburn supplement at all soon!

When you say:

"If that info is not correct (as much of the info out there is) I don't have to be as concerned about every little glutenous crumb"

That makes me a little nervous. All my spouses tests and biopsy were negative but he needs to be very careful. He can't just take the hamburger off the bun. I am not sure what you mean and so I am a little nervous for you.

Keep an eye on the dates for anything you read about NCGS. It is a dynamic field of research so ignore the older stuff. Anything Dr. Fasano writes is worth reading.

Good overview article with comments

http://online.wsj.com/article/SB10001424052748704893604576200393522456636.html

NCGS and increased mortality

http://celiacdisease.about.com/od/glutenintolerance/a/Gluten-Sensitivity-Health-Risks.htm

Here's a link to the mortality study cited in the last article:

http://www.ncbi.nlm.nih.gov/pubmed/17206762

Good luck getting those vitamin D and iron levels back up; that will make a big difference in your general health!

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You may not need that Heartburn supplement at all soon!

When you say:

"If that info is not correct (as much of the info out there is) I don't have to be as concerned about every little glutenous crumb"

That makes me a little nervous. All my spouses tests and biopsy were negative but he needs to be very careful. He can't just take the hamburger off the bun. I am not sure what you mean and so I am a little nervous for you.

Keep an eye on the dates for anything you read about NCGS. It is a dynamic field of research so ignore the older stuff. Anything Dr. Fasano writes is worth reading.

Good overview article with comments

http://online.wsj.co...3522456636.html

NCGS and increased mortality

http://celiacdisease...ealth-Risks.htm

Here's a link to the mortality study cited in the last article:

http://www.ncbi.nlm....pubmed/17206762

Good luck getting those vitamin D and iron levels back up; that will make a big difference in your general health!

OMG!! Thank you so much. Those articles are scary. By the way, is it NCGI (Non-Celiac Gluten Intolerance) or NCGS (Non-Celiac Gluten Sensitivity)? I didn't realize how serious this sensitivity can be. That's it!! Every crumb is the ENEMY!!

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I was diagnosed NCGI after a negative celiac gene test. I seem to be pretty sensitive to cross contamination. It is really hard to know at the moment how far to take gluten elimination. I guess I am 'lucky' that I react strongly, as that makes the decision easier.

I am planning to stay on top of the research, and see where it goes.

I was totally convinced that I had celiac from my symptoms, and was very surprised when everything came back negative. My gluten challenge was horrific and I had to give up after 3 weeks. That was a good convincor for me.

Welcome to the club :)

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I was diagnosed NCGI after a negative celiac gene test. I seem to be pretty sensitive to cross contamination. It is really hard to know at the moment how far to take gluten elimination. I guess I am 'lucky' that I react strongly, as that makes the decision easier.

I am planning to stay on top of the research, and see where it goes.

I was totally convinced that I had celiac from my symptoms, and was very surprised when everything came back negative. My gluten challenge was horrific and I had to give up after 3 weeks. That was a good convincor for me.

Welcome to the club :)

Thank you! Actually I'm happy to be in the club because it will force me to take better care of myself. I just called my younger brother and told him what's going on so he can keep an eye out for symptoms. One question though, is it NCGI (non-Celiac gluten intolerance) or NCGS (non-Celiac gluten sensitivity)? I've seen both online. Since I'm in the club I'm just wondering which club I'm in!! Thanks.

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Summer 2011, there was a big deal international conference for gastroenterologists, etc. In fall, 2011, a large group of them published a concensus paper to try to establish the terms used when discussing the various conditions related to wheat (Baker's asthma, celiac, etc) and this paper makes the term NCGS or non-celiac gluten sensitivity, official.

http://www.biomedcentral.com/1741-7015/10/13

Supporting your local celiac group may be a good way to keep up with the latest.

For example, the NFCA has a pretty good webpage on NCS here:

http://www.celiaccentral.org/non-celiac-gluten-sensitivity/

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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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