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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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I've read about Herbal Essences not being gluten-free on this website. Why does shampoo and conditioner need to be gluten-free? I don't eat it or anything...

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According to Dr Peter Green, the gluten protein cannot be absorbed through the skin (as I read in his book Celiac Disease: The Hidden Epidemic).

There is a school of thought, though, that it is too easy to get shampoo or conditioner into one's mouth while showering (I have never had this happen), or if there are traces of the gluten on your hands, and you put your hands in your mouth, et cetera.

I decided to not worry too much about my lotions and shampoos (I did read the labels, Suave and Neutrogena do not "hide" wheat under a different name), but if I am totally gluten free food wise, and medication wise and still have symptoms, then I'll scrutinize the labels a little better.

It's a personal decision. Some feel better knowing their personal care products are completely gluten free, others feel it's not as important. Lip balms and lipsticks, though, should definitely be gluten free, since you can actually ingest that.

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There is a school of thought, though, that it is too easy to get shampoo or conditioner into one's mouth while showering (I have never had this happen), or if there are traces of the gluten on your hands, and you put your hands in your mouth, et cetera.

But I bet you know how it tastes ???

I think its next to impossible not to get any shampoo into your mouth when showering... certainly you can be extra extra careful but then you breath the odd bit in (which end up in your back of the throat) ...

As for adsorbing.... I dunno but I do know I think its a bad idea to get it into your bloodstream and if you have cuts/spots etc. then this is quite easy... as you tend to scrub a bit and perhaps open a half closed wound when showering.. ???

Its just my 2c but I find it easier (after being caught out) to make sure the bathroom stuff is gluten-free then I don't need to worry each time !! I'm not saying you can't be real real careful...I'm just saying I shower half asleep (leastwise the first minute) and making sure I don't have a cut or spot open is not my number one thing in the morning.

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But I bet you know how it tastes ???

I think its next to impossible not to get any shampoo into your mouth when showering... certainly you can be extra extra careful but then you breath the odd bit in (which end up in your back of the throat) ...

As for adsorbing.... I dunno but I do know I think its a bad idea to get it into your bloodstream and if you have cuts/spots etc. then this is quite easy... as you tend to scrub a bit and perhaps open a half closed wound when showering.. ???

Its just my 2c but I find it easier (after being caught out) to make sure the bathroom stuff is gluten-free then I don't need to worry each time !! I'm not saying you can't be real real careful...I'm just saying I shower half asleep (leastwise the first minute) and making sure I don't have a cut or spot open is not my number one thing in the morning.

Those are definitely possibilities, and you make a good point about it being one less thing to worry about in the morning if you know your shampoo is gluten free. :)

Like I said, I read the labels on the shampoo I had when I decided to go gluten free. Nexxus actually had wheat FLOUR in it. Ugh. Tossed it out. I read on here that Suave does not hide wheat on their labels, so if they put wheat protein in it, it's on the label as wheat protein, not a fancy botanical name. More and more labels are doing that.

I read my Suave and herbal essences labels, and none had wheat on them. So I continue to use them. I didn't look up all the chemically names on there to see if they were wheat derived, though, so I'm not 100% sure they're gluten free, because the label doesn't say "gluten free".

I feel comfortable with this level because, as I said, I have yet to get shampoo in my mouth. Others may not feel comfortable with this and want to get a shampoo/conditioner that states "gluten free" on the label. I just wanted the OP to know that according to an expert, the gluten protein can't be absorbed through unbroken skin, so on that basis, there's no need to worry overmuch.

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Those are definitely possibilities, and you make a good point about it being one less thing to worry about in the morning if you know your shampoo is gluten free. :)

Like I said, I read the labels on the shampoo I had when I decided to go gluten free. Nexxus actually had wheat FLOUR in it. Ugh. Tossed it out. I read on here that Suave does not hide wheat on their labels, so if they put wheat protein in it, it's on the label as wheat protein, not a fancy botanical name. More and more labels are doing that.

I read my Suave and herbal essences labels, and none had wheat on them. So I continue to use them. I didn't look up all the chemically names on there to see if they were wheat derived, though, so I'm not 100% sure they're gluten free, because the label doesn't say "gluten free".

I feel comfortable with this level because, as I said, I have yet to get shampoo in my mouth. Others may not feel comfortable with this and want to get a shampoo/conditioner that states "gluten free" on the label. I just wanted the OP to know that according to an expert, the gluten protein can't be absorbed through unbroken skin, so on that basis, there's no need to worry overmuch.

I am about the same... luckily I do know the scientific names so it's easier ...

My incident in question was quite embarrassing. I'd actually run out of soap and had a old bottle (a present from an aunt) of shower gel I'd been using all week.... to cut a long and embarrassing story short .... I got caught short... the bar toilet was engaged and I had to go home to 'clean up'...

As I'm showering (cleaning myself up) the shower gel say's right on the front in BIG LETTERS ... "Enriched with pure wheat protein" ... :blink:

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I've read about Herbal Essences not being gluten-free on this website. Why does shampoo and conditioner need to be gluten-free? I don't eat it or anything...

Where on the website did you find this? Previous threads discuss herbal essence having wheat protein in them but I do not see that on my bottles' label.

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I don't see it on the label either. That's why I was asking about it. I've actually been using it anyway. My hair is very picky and that seems to be the only shampoo and conditioner that work well for me. I've heard about Dove and Suave but both leave my hair feeling nasty. I'd rather chance it and have nice hair. =)

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I don't see it on the label either. That's why I was asking about it. I've actually been using it anyway. My hair is very picky and that seems to be the only shampoo and conditioner that work well for me. I've heard about Dove and Suave but both leave my hair feeling nasty. I'd rather chance it and have nice hair. =)

I think mostly our hair just gets used to a product..... I'm not saying one isn't better or fels nicer but that over time your hair adjusts to whichever product you're using.

Your water can also be a big contributer...

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I don't see it on the label either. That's why I was asking about it. I've actually been using it anyway. My hair is very picky and that seems to be the only shampoo and conditioner that work well for me. I've heard about Dove and Suave but both leave my hair feeling nasty. I'd rather chance it and have nice hair. =)

Suave works for me for about, oh, three days. Then it feels gross. I like Herbal Essence's Long Term Relationship Raspberry and Silk (I think that's the name). My hair is past my shouders and I generally flat iron it, and I need a lot of moisture.

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One "hidden" place where it can be is in the tocopherols. This is vitamin E and it can be derived from wheat. Often, if you ask a company, they cannot tell you where they get the tocopherol from.

For me the shampoo and conditioner question is really hard. I feel they must be gluten free (I have DH, not to mention that I am a shower singer and I always get some in my mouth. Always.) And despite what Dr. Green says, there are articles out there they say we absorb up to 30% of whatever we put on our skin. And some people feel he is dead wrong. If you really want to get scared look up the skindeep website, where they talk about cosmetic chemicals and how they are absorbed and what they can do to you).

Then you hair can blow in your mouth, you can touch you hair or scalp and later eat something. And how many times do you find hair in your food? It is just easier not to have to worry..... I could go on. I will let your imagination do the job for me.

There are a lot of postings on this topic because it is controversial to some and also because it is really tough to find good products that are safe.

Here is a list of shampoos that I like.... I tend to switch off among them:

Yes to cucumbers for dry/colored hair (sold in Walgreens) No SLS.

Burt's Bess-- there are two of three safe ones. The shiny hair one for sure. Check the label or the website (under FAQ) No SLS.

Dessert Essences (says gluten-free on tube)

LUSH solid shampoos-- tricomania, godiva, new, shiny.... pretty much all are safe. PLus many do not have SLS.

(you can order online. There is a store in the Mall of America.)

California baby

Other people here have mentioned Herbal Essences as safe, as well as dove, pantene, alterna, kenra and neutrogena (read labels.) There are more small brand that have been mentioned as safe (see the post "losing it over shampoo" in the coping section.) Some of these are not locally available to me. I imagine that is the case for many people.

For conditioners, there are some safe ones by korres, Lush, burt's bees, Dessert essences....

Good luck!

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I called the manufacturer about Herbal Essence a couple months ago and they said they couldn't guarantee that some of their ingredients may have become cross contaminated, but don't intentionally add any gluten to their products. I don't care for the way my hair feels using Dove or Suave either, but have had good luck with Garnier Fructis. All their shampoos and conditioners are gluten free, but I always call and double check when I buy a new bottle.

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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.  
    • I appreciate your point. However, constancy of my celiac symptoms indicates that I have had the disease for at least three years - while I have never experienced any food allergies in that time. Although I will keep an eye on any emerging allergies, I believe my current fatigue is due to nutritional deficiency, because the only exogenous change in my life style has been the transition to gluten free diet.   Yes, I certainly need to keep a food diary. Thanks again for the advice.
    • In many cases no.....I consume heavy magnesium foods like pumpkin seeds, cocoa nibs etc....and still need 2-3x the dose of magnesium recommendations. Going on more of what poster boy said. You dose magnesium to tolerance with citrate like Natural Vitality Calm you start off small partial doses and slow ramp up....it can hit you hard causing gas and D if you go to quick into it. You dose citrate to tolerance meaning you slowly up your dose til you get loose stools...then back down a bit. You should have vivid dreams with a good dosing....also if it becomes to harsh or you can not handle citrate there is Doctors Best Glycinate...it does not have the gut effects at all...but the dreams and how much it makes you relax is more more felt.   ...with this disease you can have a food intolerance or allergy crop up out of the blue....like no where. You have a autoimmune disease....celiac it effects your immune system and can make it really wonky. Like it seems to always be on guard like a sleep deprived sentry on stim packs...jumps at everything and shoots it. If you get sick, eat something odd or harsh you system might red flag it as a issue for awhile and go bonkers....keep a food diary and try a food rotation in the mean time...OH as a example to this, I was fine with chia seeds last week...I got a cold over the weekend....same bag, same brand same way....withing 30mins I now puke if I eat them...new intolerance.....I also am finding jalapenos/paprika making it sleepy tired....so I am removing them both for a few months from my diet and changing to other sources for fats/fiber and vitamin A/C til I get over that issue.....these things just happen. https://www.mindbodygreen.com/articles/are-food-sensitivities-for-life
    • Hi Isabel, Your body needs nutrients to grow.  Nutrients not absorbed well when we have celiac disease damage in our guts.   But, if you do a good job of avoiding gluten, the gut damage should heal and you will be able to absorb nutrients again. The thing to remember is celiac disease is an immune system reaction.  Immune reactions are very sensitive and just a tiny amount of gluten can get them going.   And they can last for months.  So it;s very important to avoid all gluten all the time, to keep the immune reaction down.  Keeping the immune reaction down keeps the damage down, and the healing can keep up. You may start to grow more if you can absorb nutrients better.  Some extra vitamin pills might be a good idea.  Your doctor should know.  
    • Thank you Gail for your response. Of course one should be mindful of the possibility of food allergies but I don't think that's the case with my current situations. Save for gluten containing product, everything I eat now I used to eat before with no reaction whatsoever. I think my issue is more likely to be deficiency in minerals and such.
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