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Hair Loss
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A year ago (and for the 19 years of my life before that) I had very long, very thick healthy hair. Around this time last summer it started falling out - in chunks. It was really dry and brittle and my roots where thin and white. Within a few months more then half had fallen out and I had to wear hats and different hair styles to cover the thinning patch at the top. I switched to washing my hair with 1 part baby shampoo and 1 part sage tea. After 6 months my hair stopped falling out and it grew back, but not to its original thickness and health.

Anyway, it was at this time that other symptoms started popping up, and doctors had no idea what was going on, but I eventually discovered celiacs. (*Note that I haven't been tested... cant see a specialist for 6 months, I'm also not sure that the hair loss is wheat-related, even though it seems highly likely).

Recently I've been noticing that my hair is thinning again. My roots are dry and brittle and I'm loosing way more hairs then I should be. I first noticed this when I switched to a Revlon shampoo for two weeks and my hair was falling out excessively. When I realized that wheat was a listed ingredient, I immediately threw out the bottle and started using baby shampoo. My hair seemed to improve a little bit, but since then it's been getting progressively worse. I'm so terrified, I don't want to go through the anxiety of losing my hair again.

I'm aware that I've been sneaking small amounts of wheat into my diet - a handful of non-gluten-free rice crackers here, a few potato chips there - foods that I know give me a small reaction but don't contain significant amounts of wheat gluten. Currently ive stopped "cheating" on my wheat-free diet. I hope that helps.

Does anyone have any experience with celiac related hair loss? Any suggestions as to what else I should be doing to preserve my hair?

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If your hairloss is related to the autoimmune reaction from celiac you simply can't cheat on the diet. Even small amounts will cause the loss to restart. I do have celiac related hairloss and when even small amounts sneak in I go through at least a couple weeks of fall out.

Something that helps me is I take Country Life 'Hair and Nails' vitamins and an additonal one that is straight Biotin. I also am really careful with shampoos and such, I get the hairloss from soy as well as wheat, and I use either the Shikai line, read the ingredients cause not all are safe, and the Garnier Nutritieste, again read the ingredients as wheat will be clearly listed if it is there.

One thing you do need to know is that if you are gluten free all your testing will be a false negative. If you want the specialist to diagnose you will need to go back on gluten for 2 to 3 months before the appointment. That means at least 4 slices of bread a day. If you have been gluten free you can expect that challenge to make you quite ill. It is your choice whether you want an 'official' diagnosis or whether you can remain strict to the diet by just listening to your body.

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i was diagnosed with celiac and have been gluten free since jan of this year (with the exception of some accidental cc's and a few weeks of a gluten challenge). i am being told my hair is looking thicker. i personally feel like there is not much improvement up there yet. i did notice in may when i did the challenge that i was losing gobs of hair and after i stopped eating gluten my hair loss reduced significantly. i've been using a line called "surface" which promises to be gluten free. its salon only but they have a website. i know because i was pretty bad off when i finally got diagnosed that it will take longer for me to see overall improvement. but like ravenwoodglass said the accidental cc's seem to impact the hair and maybe that could be impacting my progress. over the summer i've had a few cc's unfortunately and its been rough because you feel like you take a giant step backwards. just gotta do everything you can to make sure you are completely staying away from gluten. it does get easier.

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If gluten can cause your body to attack it's own cells in places like your intestine, your lungs or your skin then your hair is certainly not safe from attack. Considering the oddly high concentration of immune cells on the scalp it's really easy for any sort of immune problem to end up compromising your hair's health.

I know whenever I end up getting some gluten sneaking in to my diet my scalp gets itchier and if I don't catch the offending food item soon enough then my hair thins out a bit.

Certainly stop cheating on your treatment, additionally however keep a tube of hydrocortisone handy to spread on to reduce the itch (and inflammation) that's resulting in the hair loss during flare ups and also try eating a diet low in inflammation (high on veggies and fish based omega-3s).

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@Ravenwoodglass Thanks for the advice! I know that for a diagnosis I need to be on a wheat diet for a good 2 months, but I simply can't go back to eating wheat because it makes me so sick. Waiting 6 months to see a specialist is just nuts. My family doctor recommended I stick on the wheat-free diet. I think that's the best thing I can do for now.

@Bluebonnet Thanks!! I'm so scared every time I use a shampoo/conditioner. I'll definitely check out surface! Do you know of any wheat-free soaps and lotions?

@Wheatchef I have the exact same problem. When my hair falls out, my scalp is so itchy, dry and inflamed. A dermatologist I visited a while ago noticed the inflammation and gave me a special hair conditioner. It was a little bit soothing, but didn't really solve the issue. I take omega-3 supplements and condition my hair with olive oil every few nights. That seems to help ^^

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@Ravenwoodglass Thanks for the advice! I know that for a diagnosis I need to be on a wheat diet for a good 2 months, but I simply can't go back to eating wheat because it makes me so sick. Waiting 6 months to see a specialist is just nuts. My family doctor recommended I stick on the wheat-free diet. I think that's the best thing I can do for now.

@Bluebonnet Thanks!! I'm so scared every time I use a shampoo/conditioner. I'll definitely check out surface! Do you know of any wheat-free soaps and lotions?

@Wheatchef I have the exact same problem. When my hair falls out, my scalp is so itchy, dry and inflamed. A dermatologist I visited a while ago noticed the inflammation and gave me a special hair conditioner. It was a little bit soothing, but didn't really solve the issue. I take omega-3 supplements and condition my hair with olive oil every few nights. That seems to help ^^

i have been using dove for my soap and for lotion i have been using burt's bees baby lotion. bare escentuals is pricey but they have gluten free makeup and skin care. for less expensive i have heard that garnier (not sure if that is spelled right) products have a lot of gluten free but check labels of course. and i will check into those after i have depleted my other stuff. losing hair being young and a woman is devastating but so is losing control of your health no matter who you are. if you are fine not getting the "official clinical diagnosis"than i would stay far away from gluten from now on ... especially if you see improvement! there's your diagnosis!!! :)

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Thanks, I'll definitely look into Garnier.

As for my hair loss... its been getting worse. My scalp always feels inflamed and my hair keeps on falling out. I'm readjusting my diet, yet again, and resorting to making my own shampoo instead of using store bought products.

I really hope it gets better...

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@Ravenwoodglass Thanks for the advice! I know that for a diagnosis I need to be on a wheat diet for a good 2 months, but I simply can't go back to eating wheat because it makes me so sick. Waiting 6 months to see a specialist is just nuts. My family doctor recommended I stick on the wheat-free diet. I think that's the best thing I can do for now.

You are saying a wheat free diet, you should also be avoiding barley, rye and oats to be gluten free. I hope things improve soon for you but if they don't soon and you haven't seen a dermatologist they might be helpful.

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I used to have really thick hair also... It's been falling out since I started having problems just before my 19th Birthday... It's been 12 years... Anyhow, I have been treated for Hypothyroidism since 2003. Getting my thyroid "normal" helps allot with hair loss, weight, ect. However, I think the Thyroid is because of the Gluten... Ugh... Anyhow, I know how frustrating it can be...

I haven't been "diagnosed" but have been allergic to Wheat Gluten & Starch all of my life. I thought that was it... Until recently I found out about Gluten Intolerance. I had thought about Celiac many times over the years but since I could eat bleached wheat & not get a stomach ache I figured it wasn't Celiac... I'm still trying to figure out which one it is I have... Anyhow, I'm perfectly fine without a diagnosis, although they are nice... It's just not worth being misrable. But then, Dr's are idiots in my book & they have never helped me so... My point, is it worth eating wheat for the diagnosis?

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@ToriMartin : sorry to hear that you've been having hair problems too. Hope you figure things out!

I finally went to an allergy specialist who recommended that I keep on a wheat-free diet. He also told me that my hair loss was probably related to the wheat/gluten intolerence, and that I need to "clean up my diet." I've stopped cheating, I've switched from store bought shampoos to pure glycerine, but my hair is still falling out.

The last few time I "cheated" was over a week ago when I had a handful of cheese flavored potato chips that gave me very small mouth sores, D, cramps, overall sick feeling... but it was a very mild reaction. A few days after that I made a toast in my family toaster (which was kind of dirty and filled with crumbs >.<), guess I got crumbs on my wheat-free bread, and I feel like poop all day, mouth sores, bloating, weakness... but again, this wasn't a very severe reaction.

I also used a baby shampoo two days ago, I don't think there's anything in that that could have given me a reaction...

My diet has been clean since then and I haven't had symptoms for the past few days, but my scalp is red and itchy and my hair continues to fall out... its getting worse and I'm so scared. I'm starting to suspect that maybe my hair loss isn't wheat-related... but then again small amounts of wheat keep on sneaking into my diet on a consistent basis... I don't want to go back to my family doctor for the 100th time with the same problem.... I just don't know what to do.. I have the money saved up for a good wig, so at least I'll have that as a last resort.

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The last few time I "cheated" was over a week ago when I had a handful of cheese flavored potato chips that gave me very small mouth sores, D, cramps, overall sick feeling... but it was a very mild reaction. A few days after that I made a toast in my family toaster (which was kind of dirty and filled with crumbs >.<), guess I got crumbs on my wheat-free bread, and I feel like poop all day, mouth sores, bloating, weakness... but again, this wasn't a very severe reaction.

You have to get serious about the diet for your hair to grow back and to stop falling out. Even if you don't feel a reaction is 'severe' and I do consider mouth sores, D, cramps and feeling sick more than a 'mild' reaction by the way, you are keeping those antibodies active.

You need to get a dedicated toaster for you gluten free bread. You cannot use the family toaster, period. You can get a toaster for about 10 bucks at a discount store.

I do hope you get a bit stricter with the diet. I know it is hard but it is the only way your body is going to heal. Until those antibodies are gone you will likely continue to have issues with your hair and you risk developing other more serious issues.

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Thank you Ravenwoodglass, that's exactly what I needed to hear. I'm still getting used to understanding what affects me and what doesn't. I assume that a few potato chips are harmless, but I pay for it afterwards.

I also just figured out that a new brand of "wheat-free" bread I've been trying that my dad got me (from an independent company... one that also bakes wheat-products) must be contaminated. For the past week I've only been having one slice a day. I was a bit suspicious about it because I felt like I might have been having mild symptoms... but today I had a total of four pieces and I really don't feel well. The bread, in combination with my cheating a few days ago, might explain my swollen scalp and hair problems.

I'm cleaning up my diet for good now, and I'm being extra careful about cross-contamination (for example, having my own peanut butter jar), and no more eating out or buying products that I don't know for sure are safe. This is a lot harder then I thought it would be ...

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I'm cleaning up my diet for good now, and I'm being extra careful about cross-contamination (for example, having my own peanut butter jar), and no more eating out or buying products that I don't know for sure are safe. This is a lot harder then I thought it would be ...

It is hard at first because there is so much to look out for. It will get easier with time. Do be aware that wheat free is not always gluten free and many items that say wheat free are not safe for us. They can have CC issues or barley or other ingredients that are a no for us.

I hope your feeling better soon.

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All great advice here, but I thought I'd mention this in case the hair loss isn't gluten related (although it sounds like you should stay gluten-free for the rest of your health either way). My husband had large patches of his hair fall out last year. It was not gluten related

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Thank you Superfudge :) I'm glad that you're husbands hair loss corrected itself. I wish I could say the same for mine!

I've been to three different dermatologists within the past year (two before I went wheat-free, and one after). The first dermatologists suspected an auto-immune disease (specifically lupus) which was tested for, and nothing. The second barely looked at me and told me that it was probably stress, and that my hair would correct itself after a few months, which it did... for a few months. The third attributed my hair loss to wheat, and he just told me to stick to a clean diet. I'm not a particularity stressed out person, and when my hair falls out my scalp is red, inflamed and itchy (something that all three dermatologists noticed). So I'm not sure where to go from here. If my hair doesn't improve in a few weeks with my improved diet, I'm definitely going to find another dermatologist.

@DixieBell thank you for the article! It was very helpful. I just wish there were more effective treatments for my hair loss D:

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The issues that cause autoimmune conditions cause stress, not the other way around. After about 2 months I had noticeable improvement in my scalp's inflammation on the gluten-free diet. Unfortunately after a recent increase in dairy products (what that's not healthy either?!?!?) I had another flare up of inflammation.

While not long term by any means, short term treatment of inflammatory flare ups is as simple as either some aspirin/alleve/advil or some hydrocortisone. The inflammation that you're experiencing up top is an immune system response and the two above compound classes (NSAIDs and corticosteroids) both suppress the immune system. They're not necessarily good ideas to use for very long term situations so it's always best to focus on preventing the cause.

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Thank you so much wheat chef, it helped a lot. I too am discovering an issue with dairy. I've cut out lactose (which got rid of the stomach issues it was causing me), but after reading your post, do you suggest I should cut all dairy out? (Including lactose-free milk and cheese).

Unfortunately, I've been about 2 weeks on a "clean" diet, and my hair loss is only getting worse. My hair is so. friggn. thin. I feel so unnatractive and sickly. This hair loss is effecting every area in my life - I just want to lock myself up in my room and not face the world. As I've said before, the only thing that keeps me going is knowing that I have a bit of money saved up from my last job should I need a wig.

I guess I'm going to make an appointment with my doctor, yet again. Doubt it'l help.

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I guess I'm going to make an appointment with my doctor, yet again. Doubt it'l help.

I would make an appointment with a derm. If you still have lesions on your scalp ask the derm to test for DH while you are there. I know how frustrated and upset you must be. I hope the doctor can help you with this. Just in case it is DH, have you eliminated iodine from your diet? Iodine in salt and seafood can keep the antibodies active.

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A year ago (and for the 19 years of my life before that) I had very long, very thick healthy hair. Around this time last summer it started falling out - in chunks. It was really dry and brittle and my roots where thin and white. Within a few months more then half had fallen out and I had to wear hats and different hair styles to cover the thinning patch at the top. I switched to washing my hair with 1 part baby shampoo and 1 part sage tea. After 6 months my hair stopped falling out and it grew back, but not to its original thickness and health.

Anyway, it was at this time that other symptoms started popping up, and doctors had no idea what was going on, but I eventually discovered celiacs. (*Note that I haven't been tested... cant see a specialist for 6 months, I'm also not sure that the hair loss is wheat-related, even though it seems highly likely).

Recently I've been noticing that my hair is thinning again. My roots are dry and brittle and I'm loosing way more hairs then I should be. I first noticed this when I switched to a Revlon shampoo for two weeks and my hair was falling out excessively. When I realized that wheat was a listed ingredient, I immediately threw out the bottle and started using baby shampoo. My hair seemed to improve a little bit, but since then it's been getting progressively worse. I'm so terrified, I don't want to go through the anxiety of losing my hair again.

I'm aware that I've been sneaking small amounts of wheat into my diet - a handful of non-gluten-free rice crackers here, a few potato chips there - foods that I know give me a small reaction but don't contain significant amounts of wheat gluten. Currently ive stopped "cheating" on my wheat-free diet. I hope that helps.

Does anyone have any experience with celiac related hair loss? Any suggestions as to what else I should be doing to preserve my hair?

My friend has just been newly diagnosed with Celiac. One of her major issues has been excessive hair loss which seems to be related to severe anemia (which can be prevelent with celiac). It might be something you might want to ask the doctor about.

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Only quit the dairy if you think you might be having a specific issue with it. I merely mentioned it as an aside about how difficult it can be to pin all of this stuff down. Since then however I've tried testing it and believe it may have just been an issue with the increased sugar consumption that was accompanying the increased dairy consumption.

Considering that there is an elevated chance for someone with a gluten problem to have unbalanced microbes (internal, external bacteria/yeast) and yeast infections are more likely/frequent in such cases, it is possible that you may also be experiencing some issues with seborrheic dermatitis or another similar microbe overgrowth which can easily cause the inflammation. In such a case just going on the diet won't alleviate your problems in such a short time as the immune system will take a while to get a hold on the overgrowth. Other issues can exacerbate these problems as well, such as potentially an increase in sugar consumption which can easily occur if you start switching over to gluten-free baked goods which are jam packed full of sugar.

Have you tried any shampoos specifically meant to deal with the inflammation?

As mentioned by others, in addition to the inflammation issues you're experiencing, low levels of certain vitamins/minerals can negatively affect hair growth/vigor. This would also take a decent while to right itself after going gluten-free.

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I know this is probably just pulling stuff out of the air but I have read up on Dr. Weil and his advice of hair thinning, he reccommends Black Currant oil or evening Primrose oil(GLA's), I just bought some although some of my hair is already growing on the front top of my head as I was fearing male pattern baldness as a women...ugh...so anyway the gluten free diet is helping but I go through seasons of thinning...and I was on Warfarin(blood thinners) for 6 months which can cause hair to "thin" or fall out...so anyway Dr. Weil said to look for bottles that contain 500mg of Black Currant Oil and at least 45mg of GLA. Take one capsule 2 times a day. Oh and start with one a day for a few days to make sure you don't get digestive issues from it(everybody is different) and work your way up(my advice)...it can take up to 6 weeks to 8 weeks before you may see results and he doesn't guarantee it will work depending on what its caused form but had good results with people before..I bought the NOW brand that is wheat and gluten free. Also good for pms and autoimmune diseases, skin, hair, nails, dry skin, eczema, inflammatory disorders etc. I know I am going to take it to help as I have dry skin issues on my scalp and somewhat thin hair already. Hopefully I helped a little. :)

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Not at all out of thin air. Both of those products, black currant oil and primrose oil, are antifungal in nature (ie: antiyeast) and pretty much all antifungal compounds are good for hair growth. Tea Tree oil, green tea, grape seed extract, clove, cumin, turmeric, coconut oil, coal tar, ketaconazole, all of these have been shown in different studies to have some effect on hair loss (although not in everyone). All of those are antifungals.

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Woah a candida overgrowth makes so much sense!! I just read a few articles regarding candida related and hair loss, and finally, something that seems to fit with my type of hair loss! Considering I've been having problems with yeast and sores since I developed a problem with gluten, I can't believe I didn't make the connection before.

I'm going to start mixing tea tree oil into my shampoo, and using tea tree oil soap for the skin rashes. I'm going to try an anti-candida diet too. I hope this works!

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"Yeast overgrowth" would technically be the more accurate description. There are many different microbe which can cause problems once they reach a certain threshold in the body. Candida is but one of a handful of different yeasts (single celled fungi) that are theorized to be behind things like eczema, bowel/skin/hair issues. If you are having quite a bit of irritation on your skin, attempt a topical anti-fungal. Fungi are ridiculously similar in design to humans (technically) so things that destroy them can also harm us, as opposed to antibiotics which only really damage us by causing an imbalance of our beneficial bacteria. Because of this you should never take a systemic anti-fungal medicine without doctor consultation/prescription (unless you really don't like your liver), however topic anti-fungals are much safer in application as absorption doesn't reach the major organs. I'm not sure you can buy any systemic anti-fungal medicine over-the-counter though so that may be a moot point

If you're looking for some fast relief go with any of the following: Nizoral shampoo (ketaconazole), T-gel shampoo (Coal Tar), Athelete's foot ointment (miconazole), vagistat (tioconazole). Pretty much that whole family of drugs ends in onazole so if you see something for athelete's foot, yeast infections or even dandruff that has an active ingredient ending in onazole then you're looking at the right stuff. Because the species you're dealing with can vary, if the first form of treatment doesn't work then try one of the others.

Certainly though attempt the diet, it will help the medication and the medication will help the diet. Additionally probiotics work wonders in these cases, as the good bacteria naturally produce antifungals as well. Tea tree oil is supposed to help, but it's been my experience that its efficacy is far behind the OTC medication I mentioned above.

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    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
    • Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 
    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
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