Celiac Disease And Topical Applications ?

[irish daveyboy]

'Ursa Major',

"Your problem is, that you will only believe what doctors and researchers say in official articles, and what is considered circumstantial evidence (for lack of studies on these subjects), i. e. the experiences of people living as celiacs, means nothing to you.",

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Where do i start, your above comment would make me wonder.

Since you were diagnosed by medical techniques and medical staff, am I to assume you put no credence in the diagnosis of your Celiac Disease by said staff and methods?

Are you maybe self diagnosed and only assuming you have Celiac based on the experiences of people with Celiac Disease.

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The experiences of Celiacs is what I'm relying on to help me understand a phenomonen that is totally unknow to me.

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If my posts bother you so much (without seeming to be rude) DONT reply!!!!!

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If you have something positive to add, do so (otherwise forget it).

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David

[Jestgar]

I'm merely asking for someone to show medically that allergens in

topical products are DETRIMENTAL to Celiac or DH sufferers ????

David,

Show me that they aren't.

The real answer is: It's never been definitively studied. It's not appropriate to assume either answer is the correct one. Nor is it appropriate to expect others to agree with your experiences.

As for not having the problem in Europe, it's possible, and probable, the your wheat is a bit different than ours (aside from the US wheat being bred for higher gluten content). The genetics of European wheat are slightly different, the growing conditions are different, I suspect that the processing is different. Also, the formulations of your products are different.

Why is it so far fetched to think that people in one area would react badly to something, while people in a different area don't?

[Mango04]

I am in full agreement, Mango. Your point has a great deal of merit and was well said.

gee thanks

The NIH, National Institute of Health in US keeps a data base where hidden gluten is listed in non-food items. It there wasn't the need to do this they wouldn't have it IMHO.

Good point. It's also worth noting that some shampoos, conditioners, soaps etc. in the US now say "gluten-free" right on the bottle. Dessert Essence and California Baby are examples of this. There is also an entire company dedicated to gluten-free soaps (www.g fsoap.com - but take out the space). Why would all this exist if there wasn't a need for it?

We in Europe do not have this problem ?

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It is unheard of.

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I am trying to educate myself to it.

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I know this has been pointed out already, but the ingredients in your topical products are different than the ingredients found in topical products here in the US. I believe there are strict regulations over there regarding ingredients in cosmetics, which is not the case here. Maybe that has something to do with why the problem is unheard of in Europe?

Or maybe it's because the codex standard is more accepted over there, which kind of goes along with a belief that minute amounts of gluten are unharmful?....

[nikki-uk]

Or maybe it's because the codex standard is more accepted over there, which kind of goes along with a belief that minute amounts of gluten are unharmful?....

I think this could be why.

CUK (not sure about the Irish Coeliac Society) and all UK docs say codex is safe for 'most' coeliacs.

If you posted the question 'who reacts to codex?' on an English coeliac board you will be swamped with replies.

There is much to learn about this disease (remember when they thought you'd grow out of it?)

IMO , what works for one doesn't necessarily work for another, but I'm not in anyway going to tell someone different to me that they are misguided or wrong. You can't argue with peoples personal experience. It's very real to them.

[JennyC]

My opinion is that it is better to be safe than sorry. If you have an option of buying a perfectly good gluten free lotion over one with gluten, then why not buy the gluten-free lotion?! If my son has a gluten reaction I want there to be as few variables as possible when I try to find the gluten culprit. As his mother, I use gluten free products because my son is really cuddly. He loves to play with my hair and kiss my face. I don't want him to have to wash his hands after every time he touches me--like I'm a piece of raw meat! Better safe than sorry!

Above you mentioned toothpaste. My son was getting glutened from his toothpaste! I am very careful about his foods and cross contamination. Shortly after my son was diagnosed I went to the company website, but it was down and I ended up forgetting to go back. It would not happen every time I brushed his teeth, only sometimes when she must have swallowed too much. He ended up with the typical foul smelling floaty diarrhea. I was up in arms trying to figure it out. When I called the company again, they (Oral-B/Zooth) would not say any of their products are gluten free. I switched his toothpaste to Colgate and have only had one episode since.

Just because there has not been a formal scientific study on it does not mean that it does not exist.

[Yellow Rose]

My daughter is a biochemist and she is looking for articles that show gluten cannot be absorbed through the skin. Does anybody have any info she can look at. She was wondering if the protien is to big to be absorbed? I am so new at this I don't have a clue.

Yellow Rose

[Taylor King]

Hi Everyone,

Unfortunately, I was having some computer problems and was unable to paste a link to the article.

I went to www.mayoclinic.com and searched under 'celiac disease'. The 3rd article that came up was a brief one addressing the issue about skin care products and such w/ gluten and whether or not to avoid them. The answer was no, we do not need to avoid these products, unless you seem to have some sort of reaction. The reasoning was that celiac disease is triggered by consumption. I believe that point was made in a previous post, but I do think the mayo clinic is a good source as well.

I hope this helps! I was only diagnosed a few months ago, and I have a LOT to learn!!!! And my nutritionist told me to avoid all gluten containing topical products....Also, I had read on an advertisement from Enterolab suggesting you get tested a year after going gluten free. A reason was to make sure your not getting bits of gluten without realizing it, and it mentioned in products like lotion, etc. So I think the Mayo Clinic and Enterolab are both credible and I got different info. Although I did not read the Enterolab bit on their website, so I can't say for sure it was them. Anyway, I'm rambling....

Take care,

Taylor

[michiamojersey]

I have been on a gluten-free diet for over 2 years now and I couldn't figure out why I still had symptoms of glutening, (i.e. aching body, facial breakouts, stomach problems, etc.). I didn't really feel as strong as when I had accidentally ate something that I wasn't supposed....I was at the end of my rope, that's how I ended up on this site. I started reading up on everything I could related to celiac to see if I was missing something. I thought the whole idea of hair and body care products was bogus until I accidentally apple cider'd myself! Let me explain...my hair had alot of product build-up and my purifying shampoo wasn't doing the trick. My mom suggested that I rinse it in apple cider vinegar, apparently it strips your hair and leaves it "clean". I shampooed my hair as usual and rinsed with the vinegar. I don't shower with my mouth open, as I assume most of you don't, but I ended up with vinegar in my mouth somehow! Any of you who have any experience with a.c. vinegar know that it is rather strong and pungent. There was no mistaking that I had enough in my mouth post-shower that I had to brush my teeth. Immediately, I went online to see what ingredients to avoid in beauty products. Since switching to gluten-free last week, I have had more energy, my face is clearing up, my stomach problems are slowing going away. Maybe there IS something to this theory! I don't care what I have to do to feel better. Obviously the people that can't live and let live weren't sick enough to try anything. Thank your lucky stars that you don't have it as bad as some of us. Besides, don't we get enough heckling from ignorant doctors? I don't have DH or any other skin allergy, by the way. If you are still skeptical, a little vinegar will help you understand!

[L.A.]

I don't blame everything that happens to me on celiac disease, but I do watch the products I use and will always buy the gluten-free version--my choice. I think that's called, oh, let's say...acting responsible.

[irish daveyboy]

Hi everybody,

back after reading the whole thread that ' ravenwoodglass' kindly pointed me to,

.

I was unaware that the topic was covered before, in all honesty I never thought of

doing a search before starting the thread.

.

I must say I'm a little more enlightened on the topic and the problems that certain

people have to topical preparations which have an allergen as an ingredient.

.

At this point I have say we need to be ever mindful of other people's reactions to certain

things and that it is not possible to categorize people into nice neat groups.

Everyone is an individual and as such has individual and totally different reactions

to the same thing.(Gluten in topical products).

.

If there was anything that 'I said or inferred' in any of my posts that was offensive

to anyone I apologise unreservedly, I put it down to 'frustration' and not being able to explain

myself clearly.

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In my searches of the Internet I came across some interesting reading, and I have included

the links for the benifit of anyone who would like to read them.

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Open Original Shared Link

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Open Original Shared Link

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Open Original Shared Link

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Best Regards,

David

[ravenwoodglass]

Hi everybody,

back after reading the whole thread that ' ravenwoodglass' kindly pointed me to,

.

I was unaware that the topic was covered before, in all honesty I never thought of

doing a search before starting the thread.

.

I must say I'm a little more enlightened on the topic and the problems that certain

people have to topical preparations which have an allergen as an ingredient.

.

At this point I have say we need to be ever mindful of other people's reactions to certain

things and that it is not possible to categorize people into nice neat groups.

Everyone is an individual and as such has individual and totally different reactions

to the same thing.(Gluten in topical products).

.

If there was anything that 'I said or inferred' in any of my posts that was offensive

to anyone I apologise unreservedly, I put it down to 'frustration' and not being able to explain

myself clearly.

.

In my searches of the Internet I came across some interesting reading, and I have included

the links for the benifit of anyone who would like to read them.

.

Open Original Shared Link

.

Open Original Shared Link

.

Open Original Shared Link

.

Best Regards,

David

Hi David,

Thanks for the links. It is very hard for folks not to be skeptical about the impact of gluten if not eaten. After all in many countries doctors are clueless themselves. Few of them take the time to research throughly a disease considered to be so rare. And so many of them just don't listen to what their patients say or they give it little credence.

That really is too bad with so many like me, (Aspergers and a celiac forced retirement give me lots of time for research) willing to share with the medical community our knowledge and voice. Until doctors start to learn just what is available to them now, and pass that knowledge on to their patients it makes it hard for a lay person to really understand the serious full body impact of gluten antibody reaction in the body.

There was a challenging tone to your first post, but your subsequent ones seemed more searching to me. I am glad you were able to find some answers to your frustration. It can be so darn hard sometimes.

[lovegrov]

Women who wear lipstick most certainly do swallow some. If I were a woman I would without question make sure my lipstick did not contain gluten.

richard

[Jestgar]

At this point I have say we need to be ever mindful of other people's reactions to certain

things and that it is not possible to categorize people into nice neat groups.

Everyone is an individual and as such has individual and totally different reactions

to the same thing.(Gluten in topical products).

Hi David - very nicely written post.

Sorry I grouched at you earlier. It is really hard to tell from printed words whether someone is being lighthearted and flippant, or deliberately provoking. I read your post as the latter when clearly you just meant to start a fun debate.

Thanks for actually going to all the trouble to find some research. Now we can point to your post when the next person asks the question

[Guest Doll]

Hey David,

Thanks for that last link. It made for some good reading. My main point was always that just because a Celiac reacts to topical gluten, doesn't mean they are having a Celiac reaction and should assume it as such. I still think it only makes sense that gluten must be absorbed through the intestines for that. The gluten through the skin thing is also questionable. But maybe that's just me. I also say I'm fine with agreeing to disagree! I don't think anyone was trying to start a debate here, just get some answers.

Cheers!

P.S. You lucky guy, living in UK! I can't wait to go to Scotland!!!!

[irish daveyboy]

P.S. You lucky guy, living in UK! I can't wait to go to Scotland!!!!

Hi Doll,

Thanks for your reply, one point though Ireland is NOT the UK.

The UK is the United Kingdom of England, Wales, Scotland and for the moment

Northern Ireland.

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Don't get me wrong I'm not sensitive about the issue as I was actually

born in Glasgow Scotland (and hold a British passport) but have lived nearly all of

my life in Dublin (The Irish Republic).

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But a lot of people think that Ireland is part of the UK.

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I recently had an E-mail from the US saying ' It's terrible all that flooding in your country

will it be long before you have power back and are rescued?'.

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I had to correct them and tell them that the flooding to which they referred happened over

500 miles away in another Country,

and that if I had been in that place with no power how could I read their E-mails and reply

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You should come visit Ireland you won't be disappointed as the country is very

Coeliac (Celiac) Friendly all hotels and restaurants will give you gluten-free options

if they don't have a separate gluten-free menu.

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Best Regards,

David

[stef-the-kicking-cuty]

Hi there, I just read and didn't say much to any of it yet. There are some good posts on here. BTW, welcome to the board irish daveyboy.

I was a bit surprised, because Ursa, you didn't mention the german celiac board. Maybe I'm mistaken, but I thought, you are active there, too. Well, the problem is known in Germany and a lot of people over there also do not use gluten shampoos, soaps, toothpastes and so on. And Germany also belongs to Europe, so the problem is known.

And I grew up in Germany in a household, where the mother was a fan of wheat shampoos, soaps, toothpastes and all of that kind for that matter. So, when I came over here, I continued her tradition without even realizing it . After I still had problems after eating glutenfree stuff, I figured out, that it's the things, I put on my hair, face and hands. First I thought the same thing. I thought, might have been caused by something else. So in my effort to figure it out, I wrote down EVERY ingredient of everything I used on my skin, hair and mouth and the common denominator was wheat. After switching to other products the problems disappeared completely, so there must be something to this glutenthing on those products.

And yes, Ireland is very nice. We had the WKA world championships there in 2003. It was awesome. Unfortunately I wasn't diagnosed with celiac yet that time. I would love to visit again though. Also my husband is partly Irish.