Why Does Gluten-Free "diet"

[AutumnSong]

I've been reading in lots of places that people who are celiac/gluten intolerant need to stay away from things like shampoo, self-adhesive envelopes and stickers, and various other things that you obviously don't eat. I'm not understanding why a gluten-free "diet" also includes things that re not edible. Does anybody know? I can't seem to find an answer anywhere. From everything I've read so far it seems nearly impossible to stay away from gluten completely and yet important to do so. It all seems so very overwhelming. My brother was recently diagnosed with celiac and his doctor told him my sister and I should be tested as well. I've been wondering if gluten intolerance could explain various digestive problems and other things I've had most of my life. If I do test positive for celiac, or test negative and try the gluten-free diet anyway to see if it helps, how careful do I have to be? Is it only people who have a true allergy with immediate strong reactions that have to be super careful and paranoid about everything they touch as well as eat? All my research has left me very anxious and concerned for my brother, as well as myself if I find I need to eliminate gluten. It seems like trying to avoid it is a very stressful, all-consuming way of life. It is all scaring me. Help!

[curlyfries]

I've been reading in lots of places that people who are celiac/gluten intolerant need to stay away from things like shampoo, self-adhesive envelopes and stickers, and various other things that you obviously don't eat. I'm not understanding why a gluten-free "diet" also includes things that re not edible. Does anybody know? I can't seem to find an answer anywhere. From everything I've read so far it seems nearly impossible to stay away from gluten completely and yet important to do so. It all seems so very overwhelming. My brother was recently diagnosed with celiac and his doctor told him my sister and I should be tested as well. I've been wondering if gluten intolerance could explain various digestive problems and other things I've had most of my life. If I do test positive for celiac, or test negative and try the gluten-free diet anyway to see if it helps, how careful do I have to be? Is it only people who have a true allergy with immediate strong reactions that have to be super careful and paranoid about everything they touch as well as eat? All my research has left me very anxious and concerned for my brother, as well as myself if I find I need to eliminate gluten. It seems like trying to avoid it is a very stressful, all-consuming way of life. It is all scaring me. Help!

Shampoo always has the possibility of getting into your mouth. Lotion from your hands can get onto the foods that you eat. Many people start out only worrying about gluten in their food. Then, when they find themselves still having issues, look for gluten in other products. For someone with celiac, even if there is no noticeable reaction, there still could be damage occurring in the intestines.

There are plenty of gluten-free products out there, so once you find ones you prefer, it's no big deal. Many of the personal care products I used were already gluten-free.

It's definitely a learning process. Take a deep breath and take it one step at a time. Don't expect to get it completely right from the start.

Keep reading and continue to ask questions. You're with friends who have been there and are more than willing to help

[Chell]

The reason you need to avoid the envelopes is because gluten is in the glue used to seal them. Some people have no reaction to small amounts of gluten, others do. Sadly I'm one of those who have terrible reactions with just a tiny bit of gluten. I want to avoid shampoo & all because I don't want to get it in a cut or scrape. I don't know if that will make me sick but I don't want to take chances. Some people have skin reactions if it touches them.

You & your sister should get tested. Just remember that you still need to have gluten in your diet when you are tested. If gluten isn't in your system the test won't be accurate.

I'm still new to this but the changes are worth it! My body feels better. Good luck!

[WheatChef]

Many skin and hair care products specifically include chemicals who's sole purpose is to increase the permeability of your skin. This means that even though gluten and gluten breakdown products by themselves shouldn't be able to pass through an unharmed skin barrier the total effect of the lotion or shampoo could cause problems. Add in small dermic abrasions or cuts and you've got a decent route to your insides.

Additionally, unless you're using nose plugs your mucous lining is constantly exposed to the environment and some shampoo could easily get in there. Or consider how if you're constantly coating your skin in gluten products how easy it would be to forget this fact and innocently pick up a piece of food with your fingers.

The good part is that unlike food, you only really need one type of skin/hair care product at a time and can use the exact same one for an extended amount of time without much care to getting variety. This means you only really have to look up the gluten status of a shampoo once every year or however often you change your preferred brand.

[AutumnSong]

My understanding from the reading I've done is that it's gluten in your instestinal tract that causes problems. Why are some people saying skin contact can cause problems? I haven't read that. That makes the whole thing even more overwhelming and seem like there is really no possiblity of avoiding all gluten. How can anyone live their life without constant fear and paranoia of gluten then?

[Roda]

It is feasable that if you have sensitive skin and are prone to contact demratitis or DH that topical gluten could cause a problem. By default all my personal care products are gluten free. Anything that could potentially get into your digestive system such as lipstick, lip balm, facial makeup, hand lotion, hand soap, shampoo/conditioner (I have to watch certain shampoos and styling products because they irritate my skin..not gluten related at all), and diswasher/dishwashing soaps should be gluten free. My skin is not sensitive to topical gluten as one of my favorite lotions was aveno (lots of oats etc.). It works great, but too much chance I could touch food or something. I have dry sensitive skin and I am sensitive to detergents and fabric softner and soaps so I have to get unscented/no dyes and hypoallergenic. Again, this is not a gluten thing, just happens all of my stuff I use is gluten free. Hope that helps some.

[CeliacMom2008]

My understanding from the reading I've done is that it's gluten in your instestinal tract that causes problems. Why are some people saying skin contact can cause problems? I haven't read that. That makes the whole thing even more overwhelming and seem like there is really no possiblity of avoiding all gluten. How can anyone live their life without constant fear and paranoia of gluten then?

Most people who are concerned with skin contact are concerned because of the possibility of it ending up in their mouth (and thus intestines). Things like Blistex on the lips, lotion on the hands that touch food, shampoo in the mouth, etc.

There is much debate on this board about gluten being absorbed through the skin. The medical community will tell you that's not possible, that gluten is too large to be absorbed. Some people will swear up and down that it can be absorbed. You'll have to decide.

For us (and I repeat the "us" part), here's how we handle it:

Lotion needs to be gluten-free. As the chief chef in the family and as the person with the dryest skin, gluten-free just made sense for my lotion (and thus all of our lotion). I didn't want to put on lotion after a shower, come down to make breakfasts and lunches and have to worry about whether there was enough lotion getting transfered to the food to cause a problem. But after reading all the lotion labels and becoming more aware of what we're eating it did gross me out to think about the amount of lotion I was eating through my food over the years.

Household hand soap needs to be gluten-free, because my son is the one with Celiac and I've seen how fast his hand rinsing can be sometimes. I knew he wasn't always getting it off. I don't worry too much about soap at school or outside of our house, because I'm more personally worry about the repeated injestion of unrinsed soap. I can't imagine that there would be enough gluten in a little squirt of soap that got mostly rinsed off leaving just a little residue to be transfered to his food to cause any damage.

Shampoo needs to be gluten-free - my son has commented on how bad shampoo tastes, so I know he's getting it in his mouth.

That's just us and just for what it's worth.

But with anything you read on this forum or any other, you really need to take in a variety of sources and decide how reliable the source and make a personal decision from that. Remember that anyone can post anything.

[T.H.]

First - it'll be okay, promise! :-) Yes, it's freaking overwhelming at first; you have to read all these labels and research and that, frankly, sucks. But once you figure it out, it's very do-able. You learn some new recipes, get a few different products, and life goes on about the way it did before except now you get to add 'check your food' to the place in your brain that had 'look both ways before you cross the street.' It'll become second nature.

Very glad to hear you are all getting tested, though! In my family, one person had celiac, and when we tested the other 4 people closely related, 3 came back positive. So it's definitely worth doing.

As for the deal with non-foods? Here's how I understand it:

As far as I can tell, whether or not gluten is absorbed into your skin doesn't matter to a celiac person. The reason I say 'as far as I can tell' is because my doc has yet to get back to me on this. But from everything I've read (what I can understand of it), the reaction celiac folk have to gluten initiates when gluten comes into contact with the mucus membranes of the intestinal tract.

I don't believe substances absorbed through the skin tend to get to the inside of these mucus membranes, or even substances injected into the skin (Could be wrong, though. That's one of the things I'm trying to determine.). If anyone knows differently, I would very much love to read what information they have, as I've been trying to research this with limited success. Sigh.

That said, I'd second what everyone has mentioned about contamination. Essentially, if it can get in your mouth, or you can inhale it so it can get in your throat and be 'swallowed', then you can react to it as it heads down your digestive tract. So the only non-food items to worry about are those that you can inhale, or that you can get in your mouth.

The sensitivity is pretty high, I'm sorry to say. Some people seem to have a noticeable reaction, some don't, but you can be doing damage to yourself without feeling a reaction. that being the case, I always figure it's better to be extra cautious. That way, you know you're safe. I mean, every time your body 'attacks' you because of gluten, it's a double whammy. It lowers your immune system to attack your villi, and that, in turn, lowers your nutritional intake until it heals. Not good.

For our family, I ended up getting everything gluten free, even cleaning stuff. It's hard to get the cleaning-product's company to say outright, sometimes, if they have wheat, rye, or barley derived ingredients. Most of the time you have to call them up. But if, say, you have a cleaning spray and you inhale a teeny bit and it has gluten... well, you can imagine. Or take laundry soap. If it doesn't rinse all the way out of a towel, and you use the towel to dry your dish and your dish touches your food...if you have a soap with gluten, you can get glutened.

That doesn't mean it will always happen, but it ups the odds that it'll happen. I ended up allergic to wheat as well as being a celiac. Since going off of wheat, my reactions have increased hugely. It lets me know instantly if I get wheat in my mouth. So I can tell you from personal experience - there really can be gluten transmitted that way, sigh.

Fortunately, a lot of the more common cleaners and soaps are gluten free. Lipsticks, not so much. Those are harder to find. And as for sticky stuff? Call up the company. A lot of envelope and stamp companies don't use gluten based adhesives anymore.

Good luck to you!

I've been reading in lots of places that people who are celiac/gluten intolerant need to stay away from things like shampoo, self-adhesive envelopes and stickers, and various other things that you obviously don't eat. I'm not understanding why a gluten-free "diet" also includes things that re not edible. Does anybody know? I can't seem to find an answer anywhere. From everything I've read so far it seems nearly impossible to stay away from gluten completely and yet important to do so. It all seems so very overwhelming. My brother was recently diagnosed with celiac and his doctor told him my sister and I should be tested as well. I've been wondering if gluten intolerance could explain various digestive problems and other things I've had most of my life. If I do test positive for celiac, or test negative and try the gluten-free diet anyway to see if it helps, how careful do I have to be? Is it only people who have a true allergy with immediate strong reactions that have to be super careful and paranoid about everything they touch as well as eat? All my research has left me very anxious and concerned for my brother, as well as myself if I find I need to eliminate gluten. It seems like trying to avoid it is a very stressful, all-consuming way of life. It is all scaring me. Help!

[AutumnSong]

Thank you so much, everyone! You have all helped to give me a much better understanding of everything and I am much appreciative!

[JNBunnie1]

Thank you so much, everyone! You have all helped to give me a much better understanding of everything and I am much appreciative!

PS- Self adhesive anything is fine, since you don't have to lick it! Just having it in the house isn't any kind of threat. When I have to get an envelope wet to stick it, I just drip a few drops of water on it and spread it around. No biggie. I paranoically wash my hands before I touch anything in my kitchen anyway.

[Reba32]

I use stickers to seal envelopes now, rather than lick them. I've tried to get the dogs to lick them, but they won't do it!

As for skin care and hair care products with gluten, quite a lot of people also have skin rashes caused by Celiac disease, and/or can react to topical gluten if you have an open cut.

Personally, I do not have dermatitis herpetiformis (the skin rash that can come with Celiac), BUT, before I got rid of my shampoo that had wheat germ oil in it, I noticed that my scalp was always always always irritated. Since I've switched to entirely gluten free (other than my husband, but that's another story ) my scalp outbreaks of psoriasis are pretty much gone.

I've also switched my dogs to a gluten free food, because I was getting cross contamination from them. I'd reach my hand into the box to scoop out the dry food, and then forget to wash my hands, or they'd eat and then come and lick me in the face. I love my doggy kisses, but not when they're making me ill.

If you do have Celiac, even the slightest smallest amount could make you sick. So it's easiest to just rid the house of all of it. Including the shampoos, lipstick, body lotions, bubble bath, etc etc etc...