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Myths About Gluten In Everyday Non Edible Objects?


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59 replies to this topic

#16 pricklypear1971

 
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Posted 18 October 2012 - 04:09 AM

Thank you all for your input.

I'm aware that some products from the USA do contain Wheat protein etc (in Europe they don't).

I realise that people can suffer from contact urticaria with these products,
but is it not dangerous to make a blanket statement and say it causes a gluten reaction (defined as damage to the villi) ?

Gluten can only cause a Celiac reaction (villious Atrophy) when ingested, it can not pass trough the skin.

I'm not insinuating that anyone is 'scaremongering' but newly diagnosed Celiacs have enough to worry about with their diet, without having to change all their creams, household cleaners etc because in reality only a small portion of people have problems with contact urticaria.


I don't agree with what you are calling a gluten reaction. If your concern is with damage to the villi, then just say "damage to the villi".

I think what you are trying to do is simplify what a gluten "reaction" is. A gluten reaction, or rather exposure, isn't simple. We all react in different ways and to different levels. And on top if that, our individual reactions can vary day to day.

I could walk into a salon, and get a hair treatment using wheat germ oil...and if I run my fingers through my hair then eat some gluten-free chips I dang well may "gluten myself" and experience stomach cramps, d, and trigger an AI reaction in my intestines and feel it throughout my body. I may also have a skin reaction like itching.

I look at non-food items that contain gluten like eating a highly processed diet where one assumes low level exposure.

I also have DH, and I would NEVER put a glutenous substance on the lesions. That aversion is from flat-out fear.

Seperate from above, I also experience itching when I come onto contact with some beauty products. I usually find those products contain gluten to some degree, usually oat (not gluten-free) or wheat germ oil. They also contain lots if other things, so who knows...I try to keep it gluten-free and unscented and that seems to help me.

There are studies out there about topical reactions to gluten, in Celiacs. They usually find "no significant reaction"...note, they are measuring using specific tests and antagonists. They are not measuring (at least in studies I've found) cumulative reactions using "real" products (which is hard to do, granted).

Also, and a theory I have on beauty products...is that some of them are formulated to be very penetrating and the molecules are very small. THOSE are the products that have caused the most serious reaction to me (eye swelling). I wonder if the depth of penetration of the gluten matters? Incidentally, I do not have a topical reaction to gluten, generally speaking - I can handle glutenous bread, etc., wash my hands, and I'm fine. I don't think I am "allergic" to gluten.

I would also not use a household cleaner containing gluten, especially in the kitchen. That would be equivalent to contaminating my kitchen. That said, the only products I've ever worried about are my dish soaps.

I do think anyone with any gluten issues needs to be aware that any glutenous substance they come in contact with could cause a reaction. They could ingest it (causing a classic reaction for most) or some people have skin reactions, and some people have specific allergies. In real-world situations these reactions are sometimes difficult to seperate.

Newbies do need to know they can have reactions from a source other than food, IMO. This could save them from chasing their tails (and thinking they have other food intolerances). I do agree it should be put into perspective.
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#17 IrishHeart

 
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Posted 18 October 2012 - 04:45 AM

I think it very possible for any of us to have a wheat allergy in addition to celiac which would cause many skin irritations, sneezing, headches, etc.

When I went to the dermatologist with open, oozy, itchy sores on my face and scalp (and I no longer have these unless I am glutened by accidentally ingesting it when trusting a "gluten-free" product or restaurant staff), she said DH is a specific skin manifestation of celiac that comes from ingesting gluten (as my GI doctor also has said).

She recommends that people not put any lotions on open sores except medication designed to treat DH. As it turns out, I do not have DH, but a rash that can occur with gluten ingestion. Many people think they have DH, but it is quite possibly a rash or urticaria.

If I were to rub my legs with a piece of wheat bread right now, I would not have a "reaction". I do not have a wheat allergy in addition to celiac. (and I would wash my hands right after)

I would not purposefully go out of my way to rub wheat on my face, but by the same token, the miniscule amount of gluten protein that could possibly be in a lotion after all that hydrolyzation cannot penetrate the many skin layers and somehow wind up in my intestines. The gluten molecule is too large.

If I apply lotion to my body, I always wash my hands after. I thought everyone did that. It's pretty "slippery". :D I do read labels. I do not purposefully buy anything with wheat derivatives in them.

I am not saying some people do not have a "reaction" to products with hydrolyzed wheat in them. I never doubt someone who says they feel sick. In fact, I did---from hair spray --which I presume I inhaled a bit of and I sure felt yucky after. But for all I know, it could have just been because I was still sick. It was right after DX.

And we all use this word "reaction" a lot on this board without ever saying what that means exactly. "I had a reaction to"----means what exactly? I have a reaction to women who douse themselves with heavy perfume. Makes me nauseous and want to vomit and yell "what are you trying to cover up, Lady? Just take a shower!", but it does not mean gluten got up my nose from it.


Everybody is different and they should choose what makes them comfortable.
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#18 kareng

 
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Posted 18 October 2012 - 05:35 AM

"How does one define glutening ?? ( Villious Atrophy)"

I don't think most of us define a "glutening" as villious atrophy. We are talking about the nasty GI issues, migraines, etc we get when we have a small amount of gluten. Maybe the tiny amount of gluten I might "eat" when shampooing my hair isn't enough to cause severe intestional damage but it could be enough to make me feel awful.
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#19 IrishHeart

 
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Posted 18 October 2012 - 05:50 AM

"How does one define glutening ?? ( Villious Atrophy)"

I don't think most of us define a "glutening" as villious atrophy. We are talking about the nasty GI issues, migraines, etc we get when we have a small amount of gluten. Maybe the tiny amount of gluten I might "eat" when shampooing my hair isn't enough to cause severe intestional damage but it could be enough to make me feel awful.


Agree.

When I say "glutening"--I mean I am really sick, living in the potty, anxious, sleepless, having those "brain frogs" return (still loving that phrase Linda created) with migraines and having major joint/ muscle/ bone pain, burning nerves for two weeks--and feeling like I want to strangle the waiter who failed to handle my order with care.
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#20 Gemini

 
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Posted 18 October 2012 - 06:11 AM

"Gluten can only cause a Celiac reaction (villious Atrophy) when ingested, it can not pass trough the skin."

I am trying to understand:

How do you know? Is Celiac reaction different from reaction? I could say that I react to something; (all of the while) I don't know what kind of reaction it is, right? Also, nobody can see a villious response in each case of glutening, right? So, how can we say this one is a gluten reaction and this one is not?

My skin reacts to pulling barley grass in the garden. This might be an allergy, or gluten, but I know I react to it.

I believe the skin can take in, but I think it mostly dumps out. Still, I would think the potential is there to let gluten in. Or Is it too big?


The gluten molecule is too large to pass through the skin barrier and that is scientific fact. If things passed that easily through the skin, none of us would live to see 50. The skin is the protective barrier against the nasties in the world. I think many people haven't learned enough about anatomy and physiology to understand this but that's understandable and one the main reasons I am alwasy pushing Dr. Peter Green's book on them.
It really should be required reading by all those who have a problem with gluten.

Those with DH usually have additional allergies that would make it easy for them to react to topical irritants. It's very common and I thank Irish Daveyboy for such a wonderful post pointing out the other reasons why people react. It's easy to get tunnel vision on things when you are diagnosed with Celiac/DH. It can be so hard to finally recover from skin lesions that people begin to think they are reacting to everything or are constantly being glutened.
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#21 kareng

 
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Posted 18 October 2012 - 06:20 AM

The gluten molecule is too large to pass through the skin barrier and that is scientific fact. If things passed that easily through the skin, none of us would live to see 50. The skin is the protective barrier against the nasties in the world. I think many people haven't learned enough about anatomy and physiology to understand this but that's understandable and one the main reasons I am alwasy pushing Dr. Peter Green's book on them.
It really should be required reading by all those who have a problem with gluten.


Exactly!
If everything could pass through our skin....our clothes would pass through, we couldn't hold anything, etc.

People think lotion goes into the skin but that isn't true. Would you really want that stuff going through and into your blood stream? It sinks into the top dead layers of skin.

A few medications are small enough to pass through the skin, but those are an exception. Think nicotine patch.
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#22 T.H.

 
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Posted 20 October 2012 - 01:37 AM

Has anyone checked exactly what percentage the wheat ingredient accounts for against the weight/volume of the product, .00005 percent or 20PPM is considered gluten free (ie. it will not cause the villi to be damaged)


I know that the Gluten Free Watchdog got a couple samples of hygiene products with wheat ingredients and they tested at < 5ppm, as I recall. So for those, at least,
many Celiacs might be fine with using them.

However, 20 ppm IS enough to cause villi damage in some folks. The amount of gluten that can cause damage has been studied multiple times, but the studies do not universally agree on what amount is safe vs. what causes damage.

In fact, when the FDA looked at research and case studies, it concluded that a lot LESS than 20 ppm could cause damage in some celiacs.

In sum, these findings indicate that a less than 1 ppm level of gluten in foods is the level of exposure for individuals with celiac disease [Celiac Disease] on a GFD [Gluten Free Diet] that protects the most sensitive individuals with celiac disease and thus, also protects the most number of individuals with celiac disease from experiencing any detrimental health effects from extended to long-term exposure to gluten. (the FDAs Health Hazard Assessment for Gluten Exposure in Individuals with Celiac Disease, page 46)


And then they concluded that this would be far too difficult for the industry to meet, and that tests weren't accurate enough to be used industrially to confirm a 1 ppm standard, and therefore 20 ppm would be a better choice.

So while an extremely low amount of gluten might definitely not be an issue for many Celiacs, for some of us, like those here who react to lower levels of gluten, it can be a problem and cause actual intestinal damage.
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#23 Lady Eowyn

 
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Posted 01 November 2012 - 04:52 AM

Hi everyone
I'm late arriving at this topic as usual. Don't often sign in but am often here again of late.

Just to say really, that I have DH on scalp and this is immediately aggravated by hair products containing wheat. I have in fact proved this by knowing when the hairdresser accidentally used the wrong product. My lips also go red if in contact with wheat containing products. No gastro symptoms obviously.
Also had a spray product with wheatgerm oil as a main ingredient (for horses) so spraying outside. Made me really ill (from breathing it in) - (duh!!) red lips and terrible neuro symptoms! Needless to say - don't use it anymore.

Therefore I do check ingredients because of DH and I'm pretty sensitive.
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#24 lovegrov

 
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Posted 01 November 2012 - 06:38 AM

I've always liked the example of water. If water could pass through the skin barrier, we'd all drown.
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#25 Gemini

 
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Posted 01 November 2012 - 07:32 AM

Hi everyone
I'm late arriving at this topic as usual. Don't often sign in but am often here again of late.

Just to say really, that I have DH on scalp and this is immediately aggravated by hair products containing wheat. I have in fact proved this by knowing when the hairdresser accidentally used the wrong product. My lips also go red if in contact with wheat containing products. No gastro symptoms obviously.
Also had a spray product with wheatgerm oil as a main ingredient (for horses) so spraying outside. Made me really ill (from breathing it in) - (duh!!) red lips and terrible neuro symptoms! Needless to say - don't use it anymore.

Therefore I do check ingredients because of DH and I'm pretty sensitive.


It sounds like you have an additional wheat allergy on top of a wheat intolerance. DH is also caused by ingestion of gluten as the reaction for DH comes from within.
It is not uncommon to find people with the skin version of celiac who also suffer from contact allergies. As your skin is very sensitive to begin with, you may be very susceptible to
topical irritants.
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#26 Lady Eowyn

 
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Posted 01 November 2012 - 08:01 AM

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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#27 Gemini

 
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Posted 01 November 2012 - 10:00 AM

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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#28 Lady Eowyn

 
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Posted 01 November 2012 - 11:36 AM

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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#29 Gemini

 
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Posted 01 November 2012 - 11:55 AM

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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#30 Lady Eowyn

 
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Posted 02 November 2012 - 08:09 AM

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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