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SilentC

Shampoo Labeled Gluten Free... But contains hydrolyzed wheat protein???

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I am recently diagnosed with Celiac and I have used the Big Sexy Curly shampoo and conditioner for the last three years. I was happy that it had "gluten free" in big bold letters on the front... only to turn it over and see "hydrolyzed wheat protein" in the ingredients! The FAQ on the website says: 

"Sexy Hair’s products may contain Ethyltrimonim Chloride Methacrylate/Hydrolyzed Wheat Protein Copolymer. During the manufacturing process, the wheat starch is converted to wheat protein, which results in the removal of the gluten. All formulas have been tested to show less than detectable levels of gluten."

Can anyone explain this to me? Is this akin to Omission once being labeled as gluten free beer and now it has to be labeled "crafted to remove gluten" and turns out it isn't safe for Celiacs? 

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1 hour ago, SilentC said:

I am recently diagnosed with Celiac and I have used the Big Sexy Curly shampoo and conditioner for the last three years. I was happy that it had "gluten free" in big bold letters on the front... only to turn it over and see "hydrolyzed wheat protein" in the ingredients! The FAQ on the website says: 

"Sexy Hair’s products may contain Ethyltrimonim Chloride Methacrylate/Hydrolyzed Wheat Protein Copolymer. During the manufacturing process, the wheat starch is converted to wheat protein, which results in the removal of the gluten. All formulas have been tested to show less than detectable levels of gluten."

Can anyone explain this to me? Is this akin to Omission once being labeled as gluten free beer and now it has to be labeled "crafted to remove gluten" and turns out it isn't safe for Celiacs? 

Hi and welcome :)

There's a good discussion on this topic here: 

Omission beer is brewed like normal gluten beer and then an enzyme is added to break the proteins down. It tests below 20ppm but some react to it nonetheless. There are concerns about the validity of the testing process, some larger fragments may be enough to set off a reaction. I don't know if this is the case for hydrolyzed wheat but  my understanding is if you don't allow any in your mouth it's not going to have any effect, regardless of wheat content. 

If you're concerned, you could try another shampoo whilst you're getting used to the diet and then reintroduce this shampoo once you're ready and monitor your response?

 

 

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I would not touch the stuff with a  10ft poll...well I might put on gloves and double trash bag it and throw it out. I use EO products for my shampoo and love the coconut one with keratin. Use the shampoo and conditioner for some of the smoothest hair.

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Wheat starch cannot be converted to wheat protein - I would not trust anything that they say!

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If you like the shampoo, you can keep using it.  Just be careful to not swallow it during shampooing.  Many Celiacs use products like this with success.  

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I cannot use products with hydrolyzed wheat protein. I have to read all cosmetics, shampoos and conditioners labels to make sure that they do not contain this. I have tried these products and paid a price for it so I just avoid them.

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It's so crazy though because it's labeled gluten free! It makes me so angry! I reached out to the company and didn't get a response. 

To be safe I'm going to chuck it I think but it was expensive and it's the only shampoo that make my curls dry nice. Looks like I've got some research to do!! 

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18 minutes ago, SilentC said:

It's so crazy though because it's labeled gluten free! It makes me so angry! I reached out to the company and didn't get a response. 

To be safe I'm going to chuck it I think but it was expensive and it's the only shampoo that make my curls dry nice. Looks like I've got some research to do!! 

Have you experienced any adverse effects? If you don't swallow it you should be fine?

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Unfortunately, cosmetics do not have to comply with gluten free FDA regulations.  Companies are expected to be truthful, so you could report them.  Prescription medications also managed to slip through the FDA gluten free guidelines (you can see just how powerful drug companies can be), which is way worse in my opinion.  We all need to fight this!  

Me?  I am frugal (a.k.a. Cheap).  I would use the shampoo, at least the bottle I have in my house and would not purchase more in the future.  I do not have DH and I have yet to swallow my shampoo.  Normally, I do check shampoo labels for gluten as piece of mind can sometimes be priceless.

On a side note, I have Curley hair.  I put the emphasis on my conditioners (mostly leave in) and not my shampoo for keeping my curls looking nice.  What ingredients in the shampoo do you think works so well (just curious).  And...don’t forget, that malnourishment from Celiac disease can impact your hair.  

https://www.fda.gov/Cosmetics/Labeling/Claims/default.htm

 

 

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-_- bluntly, frack the whole "it is safe if you do not swallow it", for gods sake your using your hands to massage it into your hair, for those of us with LONG HAIR, said hair gets in the way when eating, gets blown into your mouth, YOUR ALWAYS running your hands through it. It leads to a CC NIGHTMARE, GUYS IF YOU HAVE SHORT HAIR STFU, you do not know the hazards of gluten in long hair....it will always end up causing cross contact as you touch the gluten in the hair, your lips, your food, etc...unless you live with a hair bag over your head all day the gluten in a a shampoo is a HUGE NO.

Girl check out stuff from EO products, I go to them all the time, I have also had decent luck with the seaweed bath co, and a few others.

PS, god this rant makes me look like either a girl, trans, or a queer.....I am just a guy with long hair who has been working with it for years.

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I just use Suave Naturals. Cheap, woks great & no gluten.

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On 1/7/2018 at 12:29 PM, Ennis_TX said:

-_- bluntly, frack the whole "it is safe if you do not swallow it", for gods sake your using your hands to massage it into your hair, for those of us with LONG HAIR, said hair gets in the way when eating, gets blown into your mouth, YOUR ALWAYS running your hands through it. It leads to a CC NIGHTMARE, GUYS IF YOU HAVE SHORT HAIR STFU, you do not know the hazards of gluten in long hair....it will always end up causing cross contact as you touch the gluten in the hair, your lips, your food, etc...unless you live with a hair bag over your head all day the gluten in a a shampoo is a HUGE NO.

Girl check out stuff from EO products, I go to them all the time, I have also had decent luck with the seaweed bath co, and a few others.

PS, god this rant makes me look like either a girl, trans, or a queer.....I am just a guy with long hair who has been working with it for years.

Ennis...you would be rinsing your hair thoroughly so this perceived threat is not really as you described.  It also does not help us to take you seriously when you ask those of us with shorter hair to STFU and insinuate that your rant makes you look like a girl, a trans or a queer.  That kind of talk would get you a dope slap from me if I could reach you.  You need to take a deep breath and think for a minute before posting when that angry.  As others have stated, read the science.

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6 minutes ago, Gemini said:

Ennis...you would be rinsing your hair thoroughly so this perceived threat is not really as you described.  It also does not help us to take you seriously when you ask those of us with shorter hair to STFU and insinuate that your rant makes you look like a girl, a trans or a queer.  That kind of talk would get you a dope slap from me if I could reach you.  You need to take a deep breath and think for a minute before posting when that angry.  As others have stated, read the science.

-_- Yeah I thought that rant might make me look like a queer after reading it a bit later.....I am straight btw I just have very long and fine hair...that yeah it blows everywhere and gets in my mouth sometimes, and always pushing it with my hands or having to tie it up.  I blew up because it sometimes feels like I am talking to a bunch jocks with buzz cuts when it comes to hair....like people that do not understand no matter what you do....it is going to end up in your mouth and you have to keep messing it and working with it when the stuff runs like 4-6" past your shoulders.
>.< thing is some times with the way your hair is.....you do not rinse it all out...some conditioners I have used in the past used to b ones you would not rinse all the way out....it sort of does become a issue that is very easily avoided. There are many more options for gluten free shampoos now days and many companies have taken the allergy/gluten concern to heart and removed them/used alternatives to boost sales to a larger demographic. Point is while yes I did blow up about it...and honestly in many cases the "hydrolyzed wheat protein" thing is a hit and miss on if it really contained gluten, but better safe then sorry is my bet and with tons of options....why chance it?


 

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1 hour ago, Ennis_TX said:

-_- Yeah I thought that rant might make me look like a queer after reading it a bit later.....I am straight btw I just have very long and fine hair...that yeah it blows everywhere and gets in my mouth sometimes, and always pushing it with my hands or having to tie it up.  I blew up because it sometimes feels like I am talking to a bunch jocks with buzz cuts when it comes to hair....like people that do not understand no matter what you do....it is going to end up in your mouth and you have to keep messing it and working with it when the stuff runs like 4-6" past your shoulders.
>.< thing is some times with the way your hair is.....you do not rinse it all out...some conditioners I have used in the past used to b ones you would not rinse all the way out....it sort of does become a issue that is very easily avoided. There are many more options for gluten free shampoos now days and many companies have taken the allergy/gluten concern to heart and removed them/used alternatives to boost sales to a larger demographic. Point is while yes I did blow up about it...and honestly in many cases the "hydrolyzed wheat protein" thing is a hit and miss on if it really contained gluten, but better safe then sorry is my bet and with tons of options....why chance it?


 

I just want you to remind you that I just had a repeat endoscopy last week after my diagnosis some five years ago.   Even though my antibodies are still elevated, my intestinal tract has healed.  But why have I been feeling sick?  I have chronic gastritis.  Who would have guessed?   I do not drink (rarely), take any meds other than my thyroid replacement, and do not have H. Pylori.  That leave autoimmune as the most likely culprit.  I also have some other minor issues that I think is related to Hashimoto’s.  So, I am in an autoimmune flare-up, but celiac disease is not the cause of current my woes.

My endoscopy results have validated that I have been doing a good job about avoiding gluten.  I can relax a bit now!  

I think because the treatment for celiac disease is a burden placed on us, it can become overwhelming.  Sure, we all eventually master the diet and most of us go on to lead plain old normal lives, but if something is off, celiac disease is the first thing that many of us blame.  Actually, we blame ourselves, to be honest.  We have to remember that we are often dealing with other health issues too.  

As far as hair, I buy gluten free shampoo.  It is from Costco and it says it right on the label.  Nice and inexpensive.   Do I really need it to be gluten free?  No.  I think the last time I swallowed shampoo, my mother was most likely bathing me and I did not heed her warning to keep my mouth shut (baby shampoo may not sting your eyes but it tastes awful!).  

Like you, sometimes I think it helps to have one less thing to think about and that can be priceless.       

 

 

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I've actually been glutened by shampoo with hydrolyzed wheat protein, and I wasn't even the one using it. It was my husbands!

I swear I don't go around eating my husbands hair. 

I am pretty sensitive though, so it's entirely believable that the trace amounts in his hair were getting onto his and my hands and then making its way to my mouth, etc. etc. 

It was a slow and steady low grade glutening that eventually built up to something that I was able to recognize as more definitively "a glutening". Once we ditched the shampoo and I recovered, I realized that I'd been feeling it for weeks. 

It's going to depend on your level of sensitivity, but even if you don't feel it, it could still be doing damage.

Also...

On 1/5/2018 at 8:23 AM, RMJ said:

Wheat starch cannot be converted to wheat protein - I would not trust anything that they say!

I second that. Starch is a carbohydrate, protein is a protein (obviously), there is no simple process that would convert one into the other. Also, as gluten is a protein, converting starch to protein wouldn't be expected to do anything to gluten ANYWAY. 

Speaking as a biologist here. I call poppycock. 

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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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55 minutes ago, dopaminegirl said:

I've actually been glutened by shampoo with hydrolyzed wheat protein, and I wasn't even the one using it. It was my husbands!

I swear I don't go around eating my husbands hair. 

I am pretty sensitive though, so it's entirely believable that the trace amounts in his hair were getting onto his and my hands and then making its way to my mouth, etc. etc. 

It was a slow and steady low grade glutening that eventually built up to something that I was able to recognize as more definitively "a glutening". Once we ditched the shampoo and I recovered, I realized that I'd been feeling it for weeks. 

It's going to depend on your level of sensitivity, but even if you don't feel it, it could still be doing damage.

Also...

I second that. Starch is a carbohydrate, protein is a protein (obviously), there is no simple process that would convert one into the other. Also, as gluten is a protein, converting starch to protein wouldn't be expected to do anything to gluten ANYWAY. 

Speaking as a biologist here. I call poppycock. 

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?  

 

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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. 

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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.  

 

Edited by cyclinglady

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Apologies for my over-reaction. 

As the shampoo exposure was only for a couple week or so, I doubt any lab tests would have indicated exposure. Unfortunately, since I didn't have the antibodies, I can only rely on my symptoms to tell me if I've been exposed.

I'm fortunate enough that eliminating gluten (and dairy) from my diet completely fixed my problems. I have had no lingering systems, and now that I have been gluten free for a while, when I do get gluten I have a very clear reaction (and a distinct reaction to dairy) that follows a fairly predictable timeline. This has accidentally been tested a couple of times. For example, early on before I was better at reading labels I grabbed some cookies at the grocery store that I thought were gluten free (the company produces both a normal and gluten-free version, and this was before I learned to avoid shared facilities). I had grabbed the wrong bag but I didn't figure it out until about a week of feeling crappy had passed and I went searching for a culprit. Things like this have happened a couple of times, where I accidentally did a blinded experiment on myself. The symptoms are consistent, and resolve once I remove the offending item.

So when I recognized my symptoms as the result of gluten, I went looking for a culprit and I found the shampoo and conditioner. I removed them and then I got better. 

My problems are largely systemic. I wouldn't be surprised if I don't actually have celiac but some other immune mediated reaction that hasn't been defined, but calling it celiac is the best way to get people to take my needs seriously (which I'm sure you understand). Unfortunately, my problems don't seem to fit into any particular diagnostic bucket, so I've learned not to rely on the official medical terms and just go with what works. I'm lucky to have had doctors who think the same way, else they might have told me that I didn't need to go gluten free once I failed to show clear-cut celiac. Maybe I'm pre-celiac, maybe it's the much maligned NCGS, or it's all related to leaky gut (I am eagerly awaiting the FDA approval of larazotide so that I can get a doctor to give me some, I think it might do me a lot of good). All I know is that when I went gluten and dairy free it literally changed my life. 

In general it seems that gluten exposure causes a generalized inflammatory response. I get some inflammation in my gut that manifests as reflux, acid indigestion (what I call "fake hunger"), and a little bit of urgency and unpredictability with regards to bathroom needs, but if that were the only problem, I think I could live with it. I also get headaches, brain fog, my depression/anxiety gets triggered to a scary degree, arthritis, muscle aches, and then, the clincher, muscles spasms in my upper back and neck that have been known to lay me out for a couple of days while I wait for the muscle relaxants to help me heal. The muscle spasms, arthritis and brain fog are the most recognizable and are usually what cue me in that I got glutened, especially the spasms. 

Again, sorry for being oversensitive. I should have known better, since this is such a supportive community.  

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On 1/18/2018 at 1:05 PM, Ennis_TX said:

-_- Yeah I thought that rant might make me look like a queer after reading it a bit later.....I am straight btw I just have very long and fine hair...that yeah it blows everywhere and gets in my mouth sometimes, and always pushing it with my hands or having to tie it up.  I blew up because it sometimes feels like I am talking to a bunch jocks with buzz cuts when it comes to hair....like people that do not understand no matter what you do....it is going to end up in your mouth and you have to keep messing it and working with it when the stuff runs like 4-6" past your shoulders.
>.< thing is some times with the way your hair is.....you do not rinse it all out...some conditioners I have used in the past used to b ones you would not rinse all the way out....it sort of does become a issue that is very easily avoided. There are many more options for gluten free shampoos now days and many companies have taken the allergy/gluten concern to heart and removed them/used alternatives to boost sales to a larger demographic. Point is while yes I did blow up about it...and honestly in many cases the "hydrolyzed wheat protein" thing is a hit and miss on if it really contained gluten, but better safe then sorry is my bet and with tons of options....why chance it?


 

No, the rant did not make me think you were queer but I also think that word meant something entirely different when I was growing up.  ^_^  I also like longer hair on men because that was the way things were when I was growing up.  Not a fan of the bald/buzz cut thing they all have going on today but to each his own!

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On 1/19/2018 at 3:14 PM, dopaminegirl said:

My problems are largely systemic. I wouldn't be surprised if I don't actually have celiac but some other immune mediated reaction that hasn't been defined, but calling it celiac is the best way to get people to take my needs seriously (which I'm sure you understand). Unfortunately, my problems don't seem to fit into any particular diagnostic bucket, so I've learned not to rely on the official medical terms and just go with what works. I'm lucky to have had doctors who think the same way, else they might have told me that I didn't need to go gluten free once I failed to show clear-cut celiac. Maybe I'm pre-celiac, maybe it's the much maligned NCGS, or it's all related to leaky gut (I am eagerly awaiting the FDA approval of larazotide so that I can get a doctor to give me some, I think it might do me a lot of good). All I know is that when I went gluten and dairy free it literally changed my life. 

In general it seems that gluten exposure causes a generalized inflammatory response. I get some inflammation in my gut that manifests as reflux, acid indigestion (what I call "fake hunger"), and a little bit of urgency and unpredictability with regards to bathroom needs, but if that were the only problem, I think I could live with it. I also get headaches, brain fog, my depression/anxiety gets triggered to a scary degree, arthritis, muscle aches, and then, the clincher, muscles spasms in my upper back and neck that have been known to lay me out for a couple of days while I wait for the muscle relaxants to help me heal. The muscle spasms, arthritis and brain fog are the most recognizable and are usually what cue me in that I got glutened, especially the spasms. 

We could be twins! 

I get backache, spasms tend to be in the legs. I get a load of neuro stuff I won't bore you with. Wish I had your doctors. Be very interested to see what larazotide will do if and when it appears for prescription...

 

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Another update: they stopped selling it labeled gluten free. They have also removed the hydrolized wheat protein. After several complaints and several weeks, they sent me a bottle of shampoo and a bottle of conditioner with the new formula and none of the ingredients are gluten-y that I can recognize. 

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    Jefferson Adams
    Celiac.com 06/18/2018 - Celiac disease has been mainly associated with Caucasian populations in Northern Europe, and their descendants in other countries, but new scientific evidence is beginning to challenge that view. Still, the exact global prevalence of celiac disease remains unknown.  To get better data on that issue, a team of researchers recently conducted a comprehensive review and meta-analysis to get a reasonably accurate estimate the global prevalence of celiac disease. 
    The research team included P Singh, A Arora, TA Strand, DA Leffler, C Catassi, PH Green, CP Kelly, V Ahuja, and GK Makharia. They are variously affiliated with the Division of Gastroenterology and Hepatology, Beth Israel Deaconess Medical Center, Boston, Massachusetts; Lady Hardinge Medical College, New Delhi, India; Innlandet Hospital Trust, Lillehammer, Norway; Centre for International Health, University of Bergen, Bergen, Norway; Division of Gastroenterology and Hepatology, Beth Israel Deaconess Medical Center, Boston, Massachusetts; Gastroenterology Research and Development, Takeda Pharmaceuticals Inc, Cambridge, MA; Department of Pediatrics, Università Politecnica delle Marche, Ancona, Italy; Department of Medicine, Columbia University Medical Center, New York, New York; USA Celiac Disease Center, Columbia University Medical Center, New York, New York; and the Department of Gastroenterology and Human Nutrition, All India Institute of Medical Sciences, New Delhi, India.
    For their review, the team searched Medline, PubMed, and EMBASE for the keywords ‘celiac disease,’ ‘celiac,’ ‘tissue transglutaminase antibody,’ ‘anti-endomysium antibody,’ ‘endomysial antibody,’ and ‘prevalence’ for studies published from January 1991 through March 2016. 
    The team cross-referenced each article with the words ‘Asia,’ ‘Europe,’ ‘Africa,’ ‘South America,’ ‘North America,’ and ‘Australia.’ They defined celiac diagnosis based on European Society of Pediatric Gastroenterology, Hepatology, and Nutrition guidelines. The team used 96 articles of 3,843 articles in their final analysis.
    Overall global prevalence of celiac disease was 1.4% in 275,818 individuals, based on positive blood tests for anti-tissue transglutaminase and/or anti-endomysial antibodies. The pooled global prevalence of biopsy-confirmed celiac disease was 0.7% in 138,792 individuals. That means that numerous people with celiac disease potentially remain undiagnosed.
    Rates of celiac disease were 0.4% in South America, 0.5% in Africa and North America, 0.6% in Asia, and 0.8% in Europe and Oceania; the prevalence was 0.6% in female vs 0.4% males. Celiac disease was significantly more common in children than adults.
    This systematic review and meta-analysis showed celiac disease to be reported worldwide. Blood test data shows celiac disease rate of 1.4%, while biopsy data shows 0.7%. The prevalence of celiac disease varies with sex, age, and location. 
    This review demonstrates a need for more comprehensive population-based studies of celiac disease in numerous countries.  The 1.4% rate indicates that there are 91.2 million people worldwide with celiac disease, and 3.9 million are in the U.S.A.
    Source:
    Clin Gastroenterol Hepatol. 2018 Jun;16(6):823-836.e2. doi: 10.1016/j.cgh.2017.06.037.

    Jefferson Adams
    Celiac.com 06/16/2018 - Summer is the time for chips and salsa. This fresh salsa recipe relies on cabbage, yes, cabbage, as a secret ingredient. The cabbage brings a delicious flavor and helps the salsa hold together nicely for scooping with your favorite chips. The result is a fresh, tasty salsa that goes great with guacamole.
    Ingredients:
    3 cups ripe fresh tomatoes, diced 1 cup shredded green cabbage ½ cup diced yellow onion ¼ cup chopped fresh cilantro 1 jalapeno, seeded 1 Serrano pepper, seeded 2 tablespoons lemon juice 2 tablespoons red wine vinegar 2 garlic cloves, minced salt to taste black pepper, to taste Directions:
    Purée all ingredients together in a blender.
    Cover and refrigerate for at least 1 hour. 
    Adjust seasoning with salt and pepper, as desired. 
    Serve is a bowl with tortilla chips and guacamole.

    Dr. Ron Hoggan, Ed.D.
    Celiac.com 06/15/2018 - There seems to be widespread agreement in the published medical research reports that stuttering is driven by abnormalities in the brain. Sometimes these are the result of brain injuries resulting from a stroke. Other types of brain injuries can also result in stuttering. Patients with Parkinson’s disease who were treated with stimulation of the subthalamic nucleus, an area of the brain that regulates some motor functions, experienced a return or worsening of stuttering that improved when the stimulation was turned off (1). Similarly, stroke has also been reported in association with acquired stuttering (2). While there are some reports of psychological mechanisms underlying stuttering, a majority of reports seem to favor altered brain morphology and/or function as the root of stuttering (3). Reports of structural differences between the brain hemispheres that are absent in those who do not stutter are also common (4). About 5% of children stutter, beginning sometime around age 3, during the phase of speech acquisition. However, about 75% of these cases resolve without intervention, before reaching their teens (5). Some cases of aphasia, a loss of speech production or understanding, have been reported in association with damage or changes to one or more of the language centers of the brain (6). Stuttering may sometimes arise from changes or damage to these same language centers (7). Thus, many stutterers have abnormalities in the same regions of the brain similar to those seen in aphasia.
    So how, you may ask, is all this related to gluten? As a starting point, one report from the medical literature identifies a patient who developed aphasia after admission for severe diarrhea. By the time celiac disease was diagnosed, he had completely lost his faculty of speech. However, his speech and normal bowel function gradually returned after beginning a gluten free diet (8). This finding was so controversial at the time of publication (1988) that the authors chose to remain anonymous. Nonetheless, it is a valuable clue that suggests gluten as a factor in compromised speech production. At about the same time (late 1980’s) reports of connections between untreated celiac disease and seizures/epilepsy were emerging in the medical literature (9).
    With the advent of the Internet a whole new field of anecdotal information was emerging, connecting a variety of neurological symptoms to celiac disease. While many medical practitioners and researchers were casting aspersions on these assertions, a select few chose to explore such claims using scientific research designs and methods. While connections between stuttering and gluten consumption seem to have been overlooked by the medical research community, there is a rich literature on the Internet that cries out for more structured investigation of this connection. Conversely, perhaps a publication bias of the peer review process excludes work that explores this connection.
    Whatever the reason that stuttering has not been reported in the medical literature in association with gluten ingestion, a number of personal disclosures and comments suggesting a connection between gluten and stuttering can be found on the Internet. Abid Hussain, in an article about food allergy and stuttering said: “The most common food allergy prevalent in stutterers is that of gluten which has been found to aggravate the stutter” (10). Similarly, Craig Forsythe posted an article that includes five cases of self-reporting individuals who believe that their stuttering is or was connected to gluten, one of whom also experiences stuttering from foods containing yeast (11). The same site contains one report of a stutterer who has had no relief despite following a gluten free diet for 20 years (11). Another stutterer, Jay88, reports the complete disappearance of her/his stammer on a gluten free diet (12). Doubtless there are many more such anecdotes to be found on the Internet* but we have to question them, exercising more skepticism than we might when reading similar claims in a peer reviewed scientific or medical journal.
    There are many reports in such journals connecting brain and neurological ailments with gluten, so it is not much of a stretch, on that basis alone, to suspect that stuttering may be a symptom of the gluten syndrome. Rodney Ford has even characterized celiac disease as an ailment that may begin through gluten-induced neurological damage (13) and Marios Hadjivassiliou and his group of neurologists and neurological investigators have devoted considerable time and effort to research that reveals gluten as an important factor in a majority of neurological diseases of unknown origin (14) which, as I have pointed out previously, includes most neurological ailments.
    My own experience with stuttering is limited. I stuttered as a child when I became nervous, upset, or self-conscious. Although I have been gluten free for many years, I haven’t noticed any impact on my inclination to stutter when upset. I don’t know if they are related, but I have also had challenges with speaking when distressed and I have noticed a substantial improvement in this area since removing gluten from my diet. Nonetheless, I have long wondered if there is a connection between gluten consumption and stuttering. Having done the research for this article, I would now encourage stutterers to try a gluten free diet for six months to see if it will reduce or eliminate their stutter. Meanwhile, I hope that some investigator out there will research this matter, publish her findings, and start the ball rolling toward getting some definitive answers to this question.
    Sources:
    1. Toft M, Dietrichs E. Aggravated stuttering following subthalamic deep brain stimulation in Parkinson’s disease--two cases. BMC Neurol. 2011 Apr 8;11:44.
    2. Tani T, Sakai Y. Stuttering after right cerebellar infarction: a case study. J Fluency Disord. 2010 Jun;35(2):141-5. Epub 2010 Mar 15.
    3. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    4. Jäncke L, Hänggi J, Steinmetz H. Morphological brain differences between adult stutterers and non-stutterers. BMC Neurol. 2004 Dec 10;4(1):23.
    5. Kell CA, Neumann K, von Kriegstein K, Posenenske C, von Gudenberg AW, Euler H, Giraud AL. How the brain repairs stuttering. Brain. 2009 Oct;132(Pt 10):2747-60. Epub 2009 Aug 26.
    6. Galantucci S, Tartaglia MC, Wilson SM, Henry ML, Filippi M, Agosta F, Dronkers NF, Henry RG, Ogar JM, Miller BL, Gorno-Tempini ML. White matter damage in primary progressive aphasias: a diffusion tensor tractography study. Brain. 2011 Jun 11.
    7. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    8. [No authors listed] Case records of the Massachusetts General Hospital. Weekly clinicopathological exercises. Case 43-1988. A 52-year-old man with persistent watery diarrhea and aphasia. N Engl J Med. 1988 Oct 27;319(17):1139-48
    9. Molteni N, Bardella MT, Baldassarri AR, Bianchi PA. Celiac disease associated with epilepsy and intracranial calcifications: report of two patients. Am J Gastroenterol. 1988 Sep;83(9):992-4.
    10. http://ezinearticles.com/?Food-Allergy-and-Stuttering-Link&id=1235725 
    11. http://www.craig.copperleife.com/health/stuttering_allergies.htm 
    12. https://www.celiac.com/forums/topic/73362-any-help-is-appreciated/
    13. Ford RP. The gluten syndrome: a neurological disease. Med Hypotheses. 2009 Sep;73(3):438-40. Epub 2009 Apr 29.
    14. Hadjivassiliou M, Gibson A, Davies-Jones GA, Lobo AJ, Stephenson TJ, Milford-Ward A. Does cryptic gluten sensitivity play a part in neurological illness? Lancet. 1996 Feb 10;347(8998):369-71.

    Jefferson Adams
    Celiac.com 06/14/2018 - Refractory celiac disease type II (RCDII) is a rare complication of celiac disease that has high death rates. To diagnose RCDII, doctors identify a clonal population of phenotypically aberrant intraepithelial lymphocytes (IELs). 
    However, researchers really don’t have much data regarding the frequency and significance of clonal T cell receptor (TCR) gene rearrangements (TCR-GRs) in small bowel (SB) biopsies of patients without RCDII. Such data could provide useful comparison information for patients with RCDII, among other things.
    To that end, a research team recently set out to try to get some information about the frequency and importance of clonal T cell receptor (TCR) gene rearrangements (TCR-GRs) in small bowel (SB) biopsies of patients without RCDII. The research team included Shafinaz Hussein, Tatyana Gindin, Stephen M Lagana, Carolina Arguelles-Grande, Suneeta Krishnareddy, Bachir Alobeid, Suzanne K Lewis, Mahesh M Mansukhani, Peter H R Green, and Govind Bhagat.
    They are variously affiliated with the Department of Pathology and Cell Biology, and the Department of Medicine at the Celiac Disease Center, New York Presbyterian Hospital/Columbia University Medical Center, New York, USA. Their team analyzed results of TCR-GR analyses performed on SB biopsies at our institution over a 3-year period, which were obtained from eight active celiac disease, 172 celiac disease on gluten-free diet, 33 RCDI, and three RCDII patients and 14 patients without celiac disease. 
    Clonal TCR-GRs are not infrequent in cases lacking features of RCDII, while PCPs are frequent in all disease phases. TCR-GR results should be assessed in conjunction with immunophenotypic, histological and clinical findings for appropriate diagnosis and classification of RCD.
    The team divided the TCR-GR patterns into clonal, polyclonal and prominent clonal peaks (PCPs), and correlated these patterns with clinical and pathological features. In all, they detected clonal TCR-GR products in biopsies from 67% of patients with RCDII, 17% of patients with RCDI and 6% of patients with gluten-free diet. They found PCPs in all disease phases, but saw no significant difference in the TCR-GR patterns between the non-RCDII disease categories (p=0.39). 
    They also noted a higher frequency of surface CD3(−) IELs in cases with clonal TCR-GR, but the PCP pattern showed no associations with any clinical or pathological feature. 
    Repeat biopsy showed that the clonal or PCP pattern persisted for up to 2 years with no evidence of RCDII. The study indicates that better understanding of clonal T cell receptor gene rearrangements may help researchers improve refractory celiac diagnosis. 
    Source:
    Journal of Clinical Pathologyhttp://dx.doi.org/10.1136/jclinpath-2018-205023

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    • Hi,  The anemia was most likely caused by celiac disease damage to your gut lining (villi).  The damage caused by celiac disease affects absorption of nutrients including vitamins and minerals.  So your body will begin to decline as it won't be able to properly function without adequate amounts of many vitamins and minerals. Also your immune system will begin working overtime to produce antibodies to gluten on a continual basis.  That's a bad thing as a ramped up immune response may develop reactions to other foods you eat.  I can't eat dairy, nightshades, soy, carrots, celery, and other foods.  All these other food intolerances most likely developed because my gut was irritated and inflamed from eating gluten for years and not knowing I had celiac disease. The forum software used to have a signature footer that showed up under posts.  Many members listed their additional food intolerances in the signature footer.  There are a lot of celiacs who had additional food intolerances develop. Since your immune system is going to go crazy trying to "fix" the problem, you can expect your other AI condition symptoms to get worse.  That is not good. Just because it is hard to do doesn't mean you shouldn't do it.  Eating gluten-free does get easier over time if you stick with it.  You can get used to eating different foods and even like them.  There is plenty of naturally gluten-free food out there.  It does take some adjustment and maybe a little adventurous spirit to eat and live gluten-free.  But the payoff is great in health and wellness. If you ate gluten-free for 3 years you can eat gluten-free for 5 years.  And 10 years etc.  You know you can do it because you already did it.
    • The gluten challenge is 12 weeks of eating gluten for the blood antibodies tests and 2 weeks for the endosocpy.  There is also the test for DH (dermatitis herpetiformis) which is a skin biopsy.  DH causes a rash on the body, often in a symmetrical pattern.  The IgA antibodies are deposited in the skin and cause the rash.  They test for DH by taking a small skin sample from next to a lesion, not on a lesion.   Going to a dermatologist who is familiar with celiac disease/ DH could be an option. Check around your area to see if you can find a dermatologist that other people with celiac disease and DH have seen.  Sometimes hospitals have celiac support groups and you might find some doctor recommendations from them. Celiac disease is not easy to diagnose but if you aren't eating gluten it is pretty much impossible to diagnose.  That may change in a few years as there were new tests being talked about that may be able to do diagnosis without a gluten challenge.  But they aren't available yet.  
    • Might be your new regular, if you went to a whole foods diet with plenty of veggies, etc. And less processed crap your getting more fiber. I used to get constipation before going gluten free....yours could be a similar issue but just 2 months is a rather short time. Many times constipation is brought on by magnesium issues, healed gut, etc. can fix this,

      Other thoughts, are you consuming a lot of fruits, juices, taking vitamin C. Frequent bowl movements could also be your getting your upward threshold of vitamin C. You could be getting more fiber then your used to.

      Or you could be getting a light gluten exposure from a condiment jar/butter tub with crumbs, or a pan with scratches you did not throw out. Ate outside your own house? Do check the newbie 101 thread to see if you missed anything.

      Any other information you can tell us? Like what you eat, Do you see pieces of undigested food? This could be a enzyme issue or a gut biome issue.
       
    • Sure.  That could be normal for you.  2 months isn't that long to heal and get everything regulated.   It may be different 2 months from now.
    • I have been recently diagnosed with Celiac's Disease.  I have changed my diet for the last 2 months.  I am finding that I have to go to the bathroom about 3 or 4 times in the morning.  It is not diarrhea. I used to go once a day. Is this normal?
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