This Made My Blood Boil...

[L.A.]

Check out this link--I would love to hear what everyone has to say. Take care, L.A.

found this article on Mayo Clinic's website:

Open Original Shared Link

[buffettbride]

I sent feedback to them about the article:

Hi there, I would like to comment about the following article on your Web site: Open Original Shared Link.

Your expert claims that gluten-free costmetics and personal products are not necessary as part of a Celiac's gluten-free lifestyle. While some of the information in the article is true that gluten cannot be absorbed through the skin, the risks of using gluten-containing products for a Celiac sufferer should not be completely overlooked.

For example, many lipsticks contain gluten. While they are not absorbed through the skin, lipstick is obviously ingested in small amounts--enough to make a Celiac sufferer sick.

Using a gluten-containing shampoo, conditioner, lotion, or soap can certainly be ingested in amounts small enough to make a Celiac sick as well.

It is HUGELY remiss to make a statement that using personal products with gluten in them are completely safe for those who suffer from Celiac Disease.

The article would be entirely more correct if a precautionary statement was given that using products that contain gluten and may be ingested--even incidentally and in small amounts--should be avoided by people who suffer from Celiac Disease.

Until then, I think this article should be removed from publication until a correction is made.

Thank you,

Mallory

[L.A.]

You go Mallory! L.A.

[Mango04]

I think he's correct in saying:

Gluten-containing cosmetics or skin-care products aren't a problem unless you accidentally swallow them. If this is a concern, you may want to avoid using such products on your lips or around your mouth.

This seems to be the common belief among most of the "celiac experts." I'm not stating my personal opinion here, but I've never heard or read anything outside of this board that says people with celiac disease must avoid all topical gluten-containing products.

[kbtoyssni]

The article is technically correct, but I would argue that it is a lot harder to avoid ingesting all personal care products than this article implies. I know I get shampoo in my mouth on occasion - it may only be once or twice a year, but that's one or two glutenings a year that I'd like to avoid.

[kbtoyssni]

I also sent them an email: "I would like to comment on your article "Celiac disease: Should I use gluten-free skin-care products?" While the article is technically correct in stating that personal care products are only an issue for celiacs if they are ingested, I would argue that it is a lot harder to avoid ingesting all personal care products than this article implies. I know I get shampoo in my mouth on occasion. It may only be once or twice a year, but that's one or two glutenings a year that I'd like to avoid. I know I fidget with my hair and touch my face a lot so if I used products that contain gluten, I would often have traces of gluten on my hands which would lead to traces of gluten all over my house and end up in me accidentally ingesting gluten. As a celiac, I have chosen to minimize my risk of getting sick by eliminating all sources of gluten from my life - even those that are not intended to be ingested.

Thank you,"

[FootballFanatic]

I get face cleanser in my mouth on a daily basis, I know this because it tastes gross.

How about powder/blush/bronzer that is applied with a brush...does that not fly into the air and potentially land itself in your mouth?

What happens if you touch your face that has gluten containing products on it and then prepare or eat food, or touch your lips?

Or, if you have haircare products in your hair and the wind blows your hair into your mouth?

I personally feel a lot better knowing that I my products don't contain gluten. There are tons out there. The only thing I've never paid attention to is mascara. I'm a huge neutrogena and dove lover.

[Ridgewalker]

Agreed. It's just about impossible not to get particles of this stuff in your mouth. I wear make-up very, very rarely, but when I do- I'm always like BLECH- it somehow ends up in my mouth.

Contamination is such a huge issue, that whether it gets in your mouth or sinks into your skin is ALMOST a moot point. You end up getting sick. It's the same principle as why Celiacs rarely work in bakeries. They're not eating the flour, but it still makes them sick.

Excellent letter, Mallory. (Now that we know your name, can we use it? )

Also, excellent letter kbtoys!

[Ridgewalker]

I sent them an e-mail, too:

This note is in regards to the article: Open Original Shared Link

It disturbs me that the possibility of accidentally ingesting a small amount of non-food products is trivialized. The tiniest amount of gluten will set off a sensitive Celiac, and it is almost impossible NOT to ingest tiny amount of these products.The products also get in your hair and on your hands- and then are spread all over your house.

One also must remember that some of these products are used by men infrequently, if ever, but may be used multiple times daily by women. This greatly increases the risk!

I understand that the author of this article never said that ingesting these products was safe. But I truly feel that the risk involved in using these products should be made clearer.

Thank you,

Sarah B.

[ktp]

Hi, I'm the editor of Ask a Specialist on MayoClinic.com. I received your e-mails about our Q&A on gluten-containing skin-care products and cosmetics. Thanks for your valuable input. Although, as one of your fellow "posters" on this message board pointed out, the information is technically correct, I agree with you that we could strengthen the language about avoiding certain non-food products that may be accidentally ingested. I'm working on revising the language as we speak. Thanks, again!

[Fiddle-Faddle]

I understand that the current research indicates that gluten is only absorbed through digestion. But I would like to point out that anybody with open, oozing blisters from dermatitis herpetiformis ought to avoid all topical products containing oatmeal, as well as products containing known gluten.

My own experience was that oatmeal baths, which I had always taken with no problem before celiac was triggered, made my DH MUCH, MUCH, MUCH worse.

If you ever had DH yourself, you would sing a far different tune! It's easy to look at research and say, "XYZ has been shown to be safe," but there's nothing like personal experience.

Unfortunately, most doctors tend to scoff at "anecdotal evidence," or even dismiss it entirely.

[Carol the Dabbler]

Hi, I'm the editor of Ask a Specialist on MayoClinic.com. ... I'm working on revising the language as we speak.

Thanks, ktp! And please come back here any time you like.

[DebNC84]

If you ever had DH yourself, you would sing a far different tune! It's easy to look at research and say, "XYZ has been shown to be safe," but there's nothing like personal experience.

Personal Experience... oh yes.. nothing like it. I know that I react from Aussie Products - mostly topical as far as I can tell - I don't eat it - but I itch all over and get bumps in my scalp and around my hairline. Don't tell me that it's not affecting me. Now maybe by some slim chance it's another type of allergy - but I doubt it.

I've had (have) DH - gut pain is something and all the other symptomss are horrible as well - I suffer from many of the symptoms - BUT Dermatitis Herpetiformis? It put me over the edge!! I nearly lost my sanity (honest) thinking I had some kind of bug in my skin or something!

[JodiC]

I emailed the Mayo also because I doctor there in the Celiac Clinic with Dr J Murray. He told me to stay away from as many gluten containing products as possible. I wonder if he was one of the specialists consulted for this answer?

[DestinyLeah]

I too, emailed them, simply because there is no "warning", there is a passing comment. A warning is made when it stands out from the information, and should be given prior to the other information. You don't dig through the packaging on a medication to figure out whether it makes you drowsy, do you? The information is clearly posted so as to be effective. My e-mail:

In response to your article: Open Original Shared Link

I feel the need to inform you that while you may not absorb gluten through the skin, it is very likely that a person using a lotion, cosmetic, or lip balm containing a popular "wheat protein complex" will ingest enough gluten to become ill if that same person suffers from Celiac.

I am a Celiac sufferer, and have had reactions to shared lip balms. If a balm shared with my toast eating friend can cause illness, I can only imagine what my reaction would be to a wheat protein complex in a lip balm. Living in New Orleans, sweating my SPF into my mouth is an eventuality, as well.

I do not ask that you tell people that they absolutely should not use these products if they have Celiac. I do, however, feel that you are obligated to give a separate and clear precautionary statement that gluten in cosmetics can- and will- be ingested. I have contacted my own GI with this information, as well, and my opinion was seconded. This is also making the rounds on several Celiac support forums. It does nothing for the credibility of this site that something as simple as a warning that cosmetics may be ingested was overlooked. I simply refuse to believe that such a mainstay of the medical community would intentionally mislead not only those suffering from a very serious disease, but the people they interact with who are trying so hard to understand this disease.

"Quality control procedures are strict, since the product must meet Food and Drug Administration (FDA) standards. Lipstick is the only cosmetic ingested, and because of this strict controls on ingredients, as well as the manufacturing processes, are imposed." As said by the FDA, and here:

"Other sources of gluten that might come as a surprise include medications and vitamins that use gluten as a binding agent, lipstick, postage stamps and contamination of gluten-free foods with foods containing gluten.", as found on this web site: Open Original Shared Link

Please, follow that link. Perhaps you will recognize it? I have provided you with a statement found from your own company site, yet there is not a clear warning of the danger in an article directly dealing with the exact same disease? I hope you find it easier to fix this problem than I found it to contact multiple doctors, the FDA, and your own site. It is sad to me that you could not link the two before the Celiac community did.