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      READ FIRST: Super Sensitive Celiacs Disclaimer   09/23/2015

      This section of the forum is devoted to those who have responses to gluten beyond the experience of the majority of celiacs. It should not be construed as representative of the symptoms you are likely to encounter or precautions you need to take. Only those with extreme reactions need go to the lengths discussed here. Many people with newly diagnosed celiac disease have a condition known as leaky gut syndrome, which can lead to the development of sensitivity to other foods until the gut is healed - which may take as long as one to three years. At that time they are often able to reincorporate into their diet foods to which they have formerly been sensitive. Leaky gut syndrome leads many people to believe they are being exposed to gluten when they are in fact reacting to other foods.
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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 FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Myths About Gluten In Everyday Non Edible Objects?
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60 posts in this topic

Hi Gemini

My posts always seem to come out wrong!

My DH is caused by ingesting gluten and I get plenty of gastro symptoms!!! What I mean't was no gastro symptoms from the hair products, etc. As you can tell - I'm prone to brain fog too.

My DH is also aggravated by using seasalt on food - sadly. Also have Hashimotos which is affected by iodine too.

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Hi Gemini

My posts always seem to come out wrong!

My DH is caused by ingesting gluten and I get plenty of gastro symptoms!!! What I mean't was no gastro symptoms from the hair products, etc. As you can tell - I'm prone to brain fog too.

My DH is also aggravated by using seasalt on food - sadly. Also have Hashimotos which is affected by iodine too.

Oh, the brain fog we all understand! :(

I also have Hashi's and that can be difficult from time to time. I have other AI problems also so can understand the difficulty of having all these things going on. I do not have a problem with other food allergies, though, so feel bad you have to deal with all this. The gastro symptoms are bad enough but to have DH on top of that...... :blink:

Do you manage to control your thyroid well? How long have you had Hashi's?

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Hi Gemini

Had Hashi's dx at age 15 - that's 36 years ago (aargh!). In hindsight had the celiac from same time and DH very bad when younger from a similar age. Used to get it on shoulder blades, scalp, buttocks and occasionally face - now almost totally confined to scalp. Incredibly symetrical too. Took thyroxine until about 6 years ago when became ill and could no longer take it - a tiny piece of one tablet made me so hyper. Took nothing for 18 months but TSH got to 6.8 and was not well at all. Luckily, found a good doctor who got me on to natural thyroid hormone - raised it slowly and am now fine and dandy on the thyroid front. :rolleyes:. Tried taking iodine some years ago and it made me hypo within 24 hours.

IMHO the celiac and hashi's are hand in hand - for me, gluten seems to affect my thyroid.

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Hi Gemini

Had Hashi's dx at age 15 - that's 36 years ago (aargh!). In hindsight had the celiac from same time and DH very bad when younger from a similar age. Used to get it on shoulder blades, scalp, buttocks and occasionally face - now almost totally confined to scalp. Incredibly symetrical too. Took thyroxine until about 6 years ago when became ill and could no longer take it - a tiny piece of one tablet made me so hyper. Took nothing for 18 months but TSH got to 6.8 and was not well at all. Luckily, found a good doctor who got me on to natural thyroid hormone - raised it slowly and am now fine and dandy on the thyroid front. :rolleyes:. Tried taking iodine some years ago and it made me hypo within 24 hours.

IMHO the celiac and hashi's are hand in hand - for me, gluten seems to affect my thyroid.

Except for the DH, we sound very similar. I've had thyroid issues since I was 17-18 but the idiots I saw at the time had me start thyroid hormone and never did much follow up on it.

I had an enlarged thyroid and no one seemed to think it an issue. I really do not trust specialists at all because of their malpractice. They just blew everything off. I stopped taking it and then when I hit my early 30's, I tanked, big time. I also had Celiac but that wasn't diagnosed until I was 46....the usual story for a Celiac.

I take Nature-throid and it works pretty well but whenever I am really stressed out, I can swing from low to high. That happened this year because I sold my house and moved....twice. Not really a good time! I have read that using iodine can make Hashi's worse in some people. Never tried that because by the time I was diagnosed with Hashi's (a second time), it was really bad and I needed thyoid hormone.

You are 100% correct....the thyroid is the one of the first and most predominant organs attacked in Celiac Disease, after the small intestine. The pancreas is another big autoimmune target and this is why you see so many thyroid problems and diabetes with Celiac. Once you turn on the attack, it doesn't just stop at your small intestine. It's anyone's guess why this is but gluten most assuredly affects my thyroid. Another reason to avoid the stuff..... :ph34r:

I am happy you have a good thyroid doc...I do too. Not an HMO physician and I attribute it to that! ;)

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Except for the DH, we sound very similar. I've had thyroid issues since I was 17-18 but the idiots I saw at the time had me start thyroid hormone and never did much follow up on it.

I had an enlarged thyroid and no one seemed to think it an issue. I really do not trust specialists at all because of their malpractice. They just blew everything off. I stopped taking it and then when I hit my early 30's, I tanked, big time. I also had Celiac but that wasn't diagnosed until I was 46....the usual story for a Celiac.

I take Nature-throid and it works pretty well but whenever I am really stressed out, I can swing from low to high. That happened this year because I sold my house and moved....twice. Not really a good time! I have read that using iodine can make Hashi's worse in some people. Never tried that because by the time I was diagnosed with Hashi's (a second time), it was really bad and I needed thyoid hormone.

You are 100% correct....the thyroid is the one of the first and most predominant organs attacked in Celiac Disease, after the small intestine. The pancreas is another big autoimmune target and this is why you see so many thyroid problems and diabetes with Celiac. Once you turn on the attack, it doesn't just stop at your small intestine. It's anyone's guess why this is but gluten most assuredly affects my thyroid. Another reason to avoid the stuff..... :ph34r:

I am happy you have a good thyroid doc...I do too. Not an HMO physician and I attribute it to that! ;)

:)

Hi (might be doing this wrong)!

I take ERFA thyroid and have just ordered Dr Peter Green's book..

Seem to have strayed from the original topic a bit!

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:)

Hi (might be doing this wrong)!

I take ERFA thyroid and have just ordered Dr Peter Green's book..

Seem to have strayed from the original topic a bit!

Excellent book! It gives a great tutorial on how the digestive process works so you really understand how Celiac progresses.

It's a must read if you have Celiac.

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Just wanted to chime in here- I personally have a very mild wheat/gluten allergy on top of

the Celiac. I can wash my hands after handling gluten and be just fine, but I realized

while working at a breakfast buffet that some crumbs that had gotten stuck under a large

ring on my finger had caused a small rash to break out after about 8 hours.

I do not think, in general, that when new people are cautioned against personal care

products containing gluten, that it's because there is concern about them having a topical,

allergic reaction. It is simply too easy to stick your fingers, your hair, anything, in your

mouth. I have very long hair and have to tie it up when it's windy or it's constantly whipping

the chapstick/lipstick off my lips and pasting it onto my glasses (very annoying). It also

took me a VERY long time to learn NOT to put my fingers in my mouth. It's just too easy

for the substance of any personal care product to get transferred into someone's mouth,

and I see no reason why anyone should need to take the risk. It's too easy to avoid when

shopping!

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Just wanted to chime in here- I personally have a very mild wheat/gluten allergy on top of

the Celiac. I can wash my hands after handling gluten and be just fine, but I realized

while working at a breakfast buffet that some crumbs that had gotten stuck under a large

ring on my finger had caused a small rash to break out after about 8 hours.

I do not think, in general, that when new people are cautioned against personal care

products containing gluten, that it's because there is concern about them having a topical,

allergic reaction. It is simply too easy to stick your fingers, your hair, anything, in your

mouth. I have very long hair and have to tie it up when it's windy or it's constantly whipping

the chapstick/lipstick off my lips and pasting it onto my glasses (very annoying). It also

took me a VERY long time to learn NOT to put my fingers in my mouth. It's just too easy

for the substance of any personal care product to get transferred into someone's mouth,

and I see no reason why anyone should need to take the risk. It's too easy to avoid when

shopping!

Actually, I do not find it hard at all to not put my fingers in my mouth, unless I have washed them. I did that long before I was diagnosed with Celiac

and gluten should be the least of anyone's worries on that subject. It's a bad habit to have, especially during cold and flu season. Doorknobs and many

other surfaces are just plain dirty and that's how most people end up sick. I rarely am ever sick and only glutened myself once and that had nothing to do with personal care products.

I think everyone has to look at their personal habits and make their decison based on that. Using personal care products is a choice issue based on habits, not a necessity. My health would never be this good if I were glutening myself on a daily basis.

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I do not think, in general, that when new people are cautioned against personal care

products containing gluten, that it's because there is concern about them having a topical,

allergic reaction. It is simply too easy to stick your fingers, your hair, anything, in your

mouth. I have very long hair and have to tie it up when it's windy or it's constantly whipping

the chapstick/lipstick off my lips and pasting it onto my glasses (very annoying). It also

took me a VERY long time to learn NOT to put my fingers in my mouth. It's just too easy

for the substance of any personal care product to get transferred into someone's mouth,

and I see no reason why anyone should need to take the risk. It's too easy to avoid when

shopping!

Sweets, I love ya !

First of all, your topical wheat allergy is a different situation.... but to address your other thoughts?

.The minute amount of "gluten" in diluted shampoo ( i.e. hydrolyzed wheat protein ) also

affecting a "wind-whipped, long haired beauty" (such as yourself) whose hair happens to land in her mouth...

or on her glasses? ...would not really cause a problem for the vast majority of celiacs... Sorry.

You are reaching here ...and I am not even sure how chapstick landing on your glasses fits the discussion.

Honestly, I do not pass the day sticking my fingers in my mouth.

The few times I may lick my fingers is when I am baking and check the batter.

(the other time is when I pose provocatively for photo shoots. :)....)

My hands are clean... usually ...and I wash them after I use the loo or stack wood or pet the cat (but not constantly..... because I am not obsessed with it) and honestly, MOST SOAP BARS AND SHAMPOOS AND LOTIONS DO NOT CONTAIN ENOUGH WHEAT TO CAUSE A PROBLEM.

UNLESS YOU HAVE A WHEAT ALLERGY.

LET'S ALL CONSULT Dr. Green's book or every celiac research center and see that this is the truth.

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Well, maybe I'm the only one who ever thoughtlessly stuck their finger in

their mouth to remove a popcorn kernel that was stuck in their gums, or a

piece of roast beef stuck between teeth, or sat down at a restaurant booth

and started eating the chips and guac without washing their hands, or

unexpectedly wound up with a mouthful of hair. (which happens all the time

in my sleep- is it just me? :ph34r: )

That's entirely possible. :D

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Well, maybe I'm the only one who ever thoughtlessly stuck their finger in

their mouth to remove a popcorn kernel that was stuck in their gums, or a

piece of roast beef stuck between teeth, or sat down at a restaurant booth

and started eating the chips and guac without washing their hands, or

unexpectedly wound up with a mouthful of hair. (which happens all the time

in my sleep- is it just me? :ph34r: )

That's entirely possible. :D

All of these things are "possible" hunny, but you are assuming your hands already have gluten on them from ?what? exactly??

and I do not see how this is possible. If people wash wash their hands, they REMOVE any trace gluten .

And even when I had long hair, it never ended up in my mouth (unexpectedly or otherwise)

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Money, books at the library, door handles, small non-gluten-free children, the grocery store/

shopping cart handles, other peoples pets, generally I sort of do always assume

my hands are covered in gluten... just how my brain works :ph34r:

My only point was that it just seems easier, to me, for someone who is new at this

to relieve themselves of any concern in their personal space when it comes to gluten.

It may not be the most logical, scientific, 'approved' way to go, but don't new people

have enough stress? I like to walk into my house and not worry about anything,

but I realize that's not an option for everyone. I'm really not trying to be contentious.

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Money, books at the library, door handles, small non-gluten-free children, the grocery store/

shopping cart handles, other peoples pets, generally I sort of do always assume

my hands are covered in gluten... just how my brain works :ph34r:

That is just the point! New people have enough stress !---and should not worry about

unnecessary "gluten phobias"

Gluten is not "lurking" on books, door handles, children, shopping cart handles or other people's

pets. Germs, maybe but that's another issue.

Unless you are kidding right now and tell us so, frankly, I am a bit surprised at you. :(

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You wouldn't be suspicious of money that's changed hands in a bakery? Or the shopping cart

handle that shoppers push around while eating doughnuts? Children covered in Goldfish

crumbs? Don't we recommend that people get gluten-free pet food so their pets don't lick them w/

gluteny tongues? Like I said, it really is ok if it's just me, was only trying to give examples

of how hard it is at first (it was for me anyway, and again it might just be me) to remember

their hands aren't safe. < disclaimer-happy to admit I'm the only one who sees this stuff.

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You wouldn't be suspicious of money that's changed hands in a bakery? Or the shopping cart

handle that shoppers push around while eating doughnuts? Children covered in Goldfish

crumbs? Don't we recommend that people get gluten-free pet food so their pets don't lick them w/

gluteny tongues? Like I said, it really is ok if it's just me, was only trying to give examples

of how hard it is at first (it was for me anyway, and again it might just be me) to remember

their hands aren't safe. < disclaimer-happy to admit I'm the only one who sees this stuff.

Hey Bunnie,

Just wanted to chime in with some support.

Do I think that there is enough gluten in the gluteny shampoos to cause a reaction? . . . Don't know, haven't called any companies to find out what the ppm is.

Do I think having dry hair blown into my mouth once in a while will transfer enough gluten to cause a reaction? . . . Not by itself

Do I think Celiac/NCGI people have to give up their favorite gluteny shampoo? . . . No

Do I think Celiac/NCGI people who use gluteny shampoos need to be diligent? . . . Yes

If I had Celiac, would I use/switch to gluten free shampoo? . . . Yes (there are plenty of mainstream brands to choose from)

Do I think people have their hands to their faces/mouths a lot more than they think they do? . . . Heck Yes . . . and as luck would have it, as I sat back to read what I wrote so far, I put my hand on my chin and my fingers were touching my lips.

I don't have Celiac, but I prepare the majority of my daughter's meals. I constantly tuck my hair behind my ears. I do not wash my hands everytime I do that. Based on my daughter's history, it takes cumulative small exposures to start a significant reaction. I don't know when, where, how much, how often these small exposures take place? I do know, for her, it's cumulative. So doing something like buying Dove Shampoo and Conditioner so that it's one less thing I have to worry about "accumulating" is well worth it to me. I don't look at buying gluten free shampoo as adding stress, I look at it as eliminating it.

And yes, when I had long hair, it occassionally blew into my mouth on a windy day.

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Have a nasty feeling that gluten is lurking out there - there's plenty of it about.

If celiac, I think that a good level of caution should be exercised and I would avoid non edible products containing gluten.

I might of course, just be neurotic :blink: .

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I don't look at buying gluten free shampoo as adding stress, I look at it as eliminating it.

Ding Ding Ding

I use gluten free personal care products. Personally, when I'm in the shower, I want to shower and not worry about getting shampoo in my mouth as the water runs down my face.

Early on, I was glutened by using a hair gel that contained wheat. (Wasn't diligent enough to wash it all off, I sometimes chew on my nails a bit) No question, and if my hair had been long and blew onto/into my mouth as it does now on occasion, it would have been a direct hit.

When a person new to the gluten free lifestyle asks the controversial topical question, I say do what is best for you. If you can use your gluten containing stuff without issue, go for it. You can always try to eliminate it if you have continuing reactions after you are sure your diet is clean and see if it makes a difference.

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Bun,

I do not purchase shampoo, lotion or lipstick with wheat derivatives in it either.

I take precautions like everyone else.

I am not arguing this point.

In fact, you know me well enough to know I am not arguing at all. :)

We have had many conversations and you know I am all about the "what works for you is all that matters" when it comes to anyone

taking charge of her health.

I have always loved this quote from Shroomie, so much so that I bookmarked it:

If every day you followed the health advice for that particular day, you would drive yourself crazy. blink.gif You would be doing what you weren't doing yesterday, and not doing what you were doing yesterday. All you can do is apply a reasoned mind and weigh the balance of the evidence and do what you think is best.

I just know that some people become absurdly gluten-phobic and that makes being a celiac all the more complicated.

IMHO

As for my long hair, it was during the 70's 80's and 90s.. Back then, we used so much gel and hair spray and other junk that perhaps my hair was just too frozen in place to fly in my mouth.

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Money, books at the library, door handles, small non-gluten-free children, the grocery store/

shopping cart handles, other peoples pets, generally I sort of do always assume

my hands are covered in gluten... just how my brain works :ph34r:

My only point was that it just seems easier, to me, for someone who is new at this

to relieve themselves of any concern in their personal space when it comes to gluten.

It may not be the most logical, scientific, 'approved' way to go, but don't new people

have enough stress? I like to walk into my house and not worry about anything,

but I realize that's not an option for everyone. I'm really not trying to be contentious.

I think much of the stress that new Celiacs feel comes from these far out ideas on how one can be potentially glutened.

They are trying to learn the correct way and instilling exaggerated situations that should not be of concern adds to that stress.

If people want to obsess about door knobs, money and library books, that's fine. Good luck with that! :blink:

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I take Natural Sources Raw Thyroid. It is gluten-free.

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If I handle gluten containing products and touch my DH it certainly has an effect - makes it super sore! Had thought this was part of my celiac and didn't realize this was an additional wheat allergy on top. (I don't mean the DH here, but the external wheat product application). If you can understand this you're doing better than me :wacko: .

As for new people, I'm sure they're not dim-wits. It is nice to read different reactions and make up your own mind - not alone in the struggle.

Probably put my foot in it :ph34r: . (Love the smileys - don't know what they all mean).

Take ERFA (natural thyroid hormone).

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As for new people, I'm sure they're not dim-wits. It is nice to read different reactions and make up your own mind - not alone in the struggle.

Probably put my foot in it :ph34r:

Not at all, Lady:). I think you summed it up very nicely, and I wholeheartedly agree.

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As for new people, I'm sure they're not dim-wits. It is nice to read different reactions and make up your own mind

Not at all!

No one thinks newbies are dim-wits, but gluten- headed people, anxious people, very ill people and scared and new- to- the- diet people---have a lot of questions. You'd be surprised at some of those questions.

Most of us try to give answers that seem reasonable.

I asked a few doozies myself in the beginning and I got panicky at times by what people told me. There is no handbook really, no set- in -stone guidelines and common sense is most definitely needed.

When you first start out, though, it can be very confusing.

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Yep.

i have onlyknown i have had celiac for 2 years now, I am 36 years old. I am extremely careful with what i eat so I do not have sttomach issues at all anymorw. only twice duid i get sick by mistake. in the past couple months i have had alot of skin issues, extremely itchy skin everywhere, open sores on my scalp, no relief. i was tested for DH, i dont have. i figured out that the shampoos, hairsprays, and hair dyes had gluten. It has only been 3 days, but my scalp is almost back to normL AND THE ITCHING AND RASHES WENT FROM 100% TO ABOUT 10%. nO DOCTOR TOLD ME THIS, i FIGURED IT OUT, it is frustrating to me that since Ifound out I was celiac, it seems I have to find out what to do all on my own. doctors at times look at me like i am crazy.

another thing weird is that i have had vitiligo ( a skin condition where i do not have pigment in my skin). since I went gluten-free, i have been getting pigment back in my skin. No doctor seems to care about this either. I also had psyoriasis prior to diagnosis, and now it is gone

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I have severe psoriasis on my scalp. Thus, there are many open wounds on my scalp. I use gluten free hair products. When I am glutened, it affects my hair and my skin as well. I get a wide strip of very coarse hair from the middle of my scalp. My skin becomes thin and easily damaged as well as hyper sensitive. So I have no doubts that inhaling trace amounts or having them seep in, is not safe - at least for me.

I know if I use a hand soap w gluten, it shreds my hands and they dry out and peel like crazy. gluten-free soap doesn't do that.

Not sure about wheat in fabric starch. But after sleeping in a hotel with a heavily starched bed, I had a raging headache. I am very suspicious. Gluten full mascara has the same effect

Not sure if anyone else has the same findings.

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    • Stomach sore from eating gluten free foods?
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      I am pretty much grain free because I am diabetic (my meter tells me so!)   So, I fill up on plenty of fats!  I have been gluten-free for three years, so I have dairy back.  I add cream to everything!  Lots of butter, olive and coconut oils, avocados and fat from meat.  Bacon! Bacon! Bacon!  Anyway, my cholesterol levels are great (only carbs from veggies).   Consider adding fats into your diet.  It should help satiate you.   Right now, your body is craving food because it was probably deprived.  Just go with it.  It should ease up!   Happy healing!  
    • Gluten In Root Beer?
      That is not really root beer!  That is an alcoholic malt beverage,  This thread is about the soda pop
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