Gluten Gluten Everywhere-really?

[momtopa]

I've been doing a ton of reading lately on the topic of Celiac Disease. I'm finding that not only do I need to watch what I eat, but is it true that I have to watch what I wash myself and my dishes as well? From "The Gluten-Free Diet" book I'm reading that I need to watch for certain other ingredients used in things that aren't foods...tocopheryl acetate for instance. I found that it's in my favorite lotion and perfume. I looked at the bottle of Dawn dish detergent and it's also in it. I'm reading that I need to be so careful as to the laundry detergent I use as well due to the chance of transfer of gluten from my dish towels to my dishes. It's soooo frustrating because I try VERY hard to make sure I'm not putting gluten in or near my mouth, but do I really need to watch the dish detergent and laundry detergent as well?

My husband's aunt has celiac disease also but REALLY does not follow the diet at all (cheats all the time) and I don't want to be like her. I want to do this right. She did tell me, however that she can't use any makeup etc due to having celiac disease. So, when I was dx'd I asked my doc and he told me I could only get gluten if I ingested it. He made me feel kind of silly, but now I don't feel so silly any more.

I was dx'd with celiac disease in October and had apparently been suffering from severe gas/bloating bouts for several years. So, I never have the big D everyone refers to on here...so, I'm not sure if this stuff is actually bothering me or not. I also hear that even though I don't have a reaction to gluten that it's still damaging my villi.

Ugh! What do I listen to? I feel like I'm driving my family crazy.

Mamaw---I'm hoping to come to your Celiac support meetings when the church in Butler is available...

It's so nice to find this site and talk to others who are going thru the same thing.

[CecilyF]

I am new too, so I cannot offer any "words of wisdom." I am very interested to know what you find out.

I am slowly trying to change everything over to gluten free. Never thought about dishwashing liquid! I do know that All Free & Clear has been mentioned as a safe detergent to use.

I am wrecked about my lipstick...a girl's gotta have her lipstick! There are several gluten-free makeup lines, and I am in the processing of checking them out too. Does anyone know about Jane Iredale? I have roscea and it works well with my redness, so I hate to give it up.

There is a wealth of information on this website and everyone is so helpful. Maybe we will get some answers soon.

Cecily

[davesa]

I've been doing a ton of reading lately on the topic of Celiac Disease. I'm finding that not only do I need to watch what I eat, but is it true that I have to watch what I wash myself and my dishes as well? From "The Gluten-Free Diet" book I'm reading that I need to watch for certain other ingredients used in things that aren't foods...tocopheryl acetate for instance. I found that it's in my favorite lotion and perfume. I looked at the bottle of Dawn dish detergent and it's also in it. I'm reading that I need to be so careful as to the laundry detergent I use as well due to the chance of transfer of gluten from my dish towels to my dishes. It's soooo frustrating because I try VERY hard to make sure I'm not putting gluten in or near my mouth, but do I really need to watch the dish detergent and laundry detergent as well?

My husband's aunt has celiac disease also but REALLY does not follow the diet at all (cheats all the time) and I don't want to be like her. I want to do this right. She did tell me, however that she can't use any makeup etc due to having celiac disease. So, when I was dx'd I asked my doc and he told me I could only get gluten if I ingested it. He made me feel kind of silly, but now I don't feel so silly any more.

I was dx'd with celiac disease in October and had apparently been suffering from severe gas/bloating bouts for several years. So, I never have the big D everyone refers to on here...so, I'm not sure if this stuff is actually bothering me or not. I also hear that even though I don't have a reaction to gluten that it's still damaging my villi.

Ugh! What do I listen to? I feel like I'm driving my family crazy.

Mamaw---I'm hoping to come to your Celiac support meetings when the church in Butler is available...

It's so nice to find this site and talk to others who are going thru the same thing.

I know how you feel!!! I am only at day 5 but I feel like my diagnosis has taken over my life! I am on the internet several hours a day researching. Many people I have spoken to have a friend who is also a celiac but I haven't met one in person. I feel like I have so many questions to ask. So sorry that I don't have any answers for you but I do feel your pain of questions.

[Juliebove]

Dawn is not gluten-free? Hmmm... I just bought some. Haven't used it yet on the dishes but daughter has used it on her oily hair. Could explain the weird rash she now has on her face.

[Juliebove]

Hmmm... I just did a seach and although the links it turned up are old, it indicated that Dawn is gluten-free.

[brigala]

Here's my opinion:

Start with the food, and any cosmetics or lotions you're likely to ingest. If you regularly slather your hands with lotion during the day, make sure it doesn't contain wheat. Your lipstick and any lip gloss or lip balm should be gluten-free. Any vitamins, supplements, or medications that you take must also be gluten-free. Your toothpaste and mouthwash should be gluten-free (fortunately, most of them are, but do check).

Then, if you continue to have symptoms, you may need to start eliminating other things. My sister has had to get rid of all shampoos and cosmetics which contain gluten. She'd been wondering for years why everything gave her a rash. I have a very sensitive scalp and I have only found a couple of shampoos that don't make my scalp bleed -- both of which happen to contain wheat germ as an ingredient. I'm not about to go through the pain and suffering of trying all the gluten-free shampoos in an effort to find one that works for me, because the wheat in my shampoo doesn't seem to bother me.

Just my $0.02.

[jerseyangel]

Dawn Dishwashing Liquid is gluten-free.

[momtopa]

Dawn Dishwashing Liquid is gluten-free.

I've seen that on here too,but according to the Gluten-Free Diet book, tocopheryl acetate is listed as an ingredient that could indicate the presence of gluten and my bote of Dawn includes that ingredient. I don't get "sick" b/c of gluten contamination

. I'm just worried about the damage that's being done to my body as a result of it. So, if I don't get an itchy rash I shouldn't worry about it?

[psawyer]

Tocopherols are not a concern, according to the Canadian Celiac Association. I certainly don't give them any thought.

Which book are you referring to? The recent one by Elizabeth Hasselbeck has a lot of misinformation in it.

[momtopa]

Tocopherols are not a concern, according to the Canadian Celiac Association. I certainly don't give them any thought.

Which book are you referring to? The recent one by Elizabeth Hasselbeck has a lot of misinformation in it.

yes, that's the one! Is that why I'm goin crazy? Lol

[sunnybabi1986]

I haven't read Elizabeth's book, but the comments I've seen regarding it are less than complimentary. Elizabeth seems to make it seem as if you should be paranoid 24 hours a day and that's just not true. I've been gluten free for...3 months now, and I'm still figuring this this thing out myself, but what I understand, the true damage to your body occurs when you ingest gluten and your immune system is activated in your small intestine to attack the gluten and to attack your own tissue. I've never had a skin reaction to gluten, so I don't really pay much attention to soaps or shampoos, since I'm very careful not to get them in my mouth, eliminating the chance of ingesting them.

I may be wrong, but I think that a skin reaction to gluten is different from person to person, and if you don't have a skin reaction, you don't need to be overly worried about products that will only come in contact with your skin. You just want to make sure they don't make it into your mouth.

As far as being overwhelmed and feeling as if gluten is everywhere, just take a breath and start with food. I started out with brown rice and veggies and grilled chicken for awhile and have added hundreds of foods in the past few months. Eliminating gluten is not a process that will happen overnight, don't expect it to. Give yourself time and you'll start finding so many ways to adapt and change. I'm amazed at how different things are for me since I began just 3 months ago. I started out feeling like you do, frustrated and confused, but slowly, it all comes together and you'll get more and more confident. Read your labels, call the companies (I call them in the grocery store, standing in the aisles, with the product in my hand!) and keep focusing on what you CAN eat! PM me if you want a list of recipes/foods that I love, it might help.

You can do it!! Pulling for you,

Janie

[Mtndog]

I've been doing a ton of reading lately on the topic of Celiac Disease. I'm finding that not only do I need to watch what I eat, but is it true that I have to watch what I wash myself and my dishes as well? From "The Gluten-Free Diet" book I'm reading that I need to watch for certain other ingredients used in things that aren't foods...tocopheryl acetate for instance. I found that it's in my favorite lotion and perfume. I looked at the bottle of Dawn dish detergent and it's also in it. I'm reading that I need to be so careful as to the laundry detergent I use as well due to the chance of transfer of gluten from my dish towels to my dishes. It's soooo frustrating because I try VERY hard to make sure I'm not putting gluten in or near my mouth, but do I really need to watch the dish detergent and laundry detergent as well?

It's so nice to find this site and talk to others who are going thru the same thing.

Hi there- welcome to the site! It's not nearly as scary as that book makes it sound. As far as I know as well, tocopherol acetate is not a problem.

I don't know of any dish soaps that contain gluten. That doesn't mean there are none, but I have yet to encounter one in 5 years of being gluten-free. Same with laundry detergents.

Like someone else said, worry about food first. Then, cosmetics and body products. Wheat is found in many things that need an emollient quality like moisturizers, hair conditioners. But I have found that it is usually clearly labeled. I've also noticed that since people have become more aware of celiac and allergies, some companies have switched gluten out of their products. For example, bath and Body Works shower cream used to contain oat. It no longer does.

I am wrecked about my lipstick...a girl's gotta have her lipstick! There are several gluten-free makeup lines, and I am in the processing of checking them out too. Does anyone know about Jane Iredale? I have roscea and it works well with my redness, so I hate to give it up.

The Jane Iredale I have has soy, but no gluten. Read the label or call the company (or do a google search for your particular product).

[Gemini]

I haven't read Elizabeth's book, but the comments I've seen regarding it are less than complimentary. Elizabeth seems to make it seem as if you should be paranoid 24 hours a day and that's just not true. I've been gluten free for...3 months now, and I'm still figuring this this thing out myself, but what I understand, the true damage to your body occurs when you ingest gluten and your immune system is activated in your small intestine to attack the gluten and to attack your own tissue. I've never had a skin reaction to gluten, so I don't really pay much attention to soaps or shampoos, since I'm very careful not to get them in my mouth, eliminating the chance of ingesting them.

I may be wrong, but I think that a skin reaction to gluten is different from person to person, and if you don't have a skin reaction, you don't need to be overly worried about products that will only come in contact with your skin. You just want to make sure they don't make it into your mouth.

This is pretty good, common sense advice and it's too bad people are still getting all kinds of misinformation about how to live gluten-free. No wonder there is so much paranoia!

A topical reaction to gluten is not a Celiac reaction. That's an allergic reaction and has nothing to do with Celiac Disease. It's usually caused by a wheat allergy or another sensitivity to something in the offending product. Unless a person eats their shampoo or make-up or chooses not to be careful about ingestion, it is not necessary to use gluten-free products, period. Lotion for the hands and lip products are the exceptions, as they stay on and are not washed off. The whole dish detergent worry is just plain laughable. Unless a person does not wash off the soap they use to do their dishes, and lets it dry on and then eats off that plate, you won't be suffering a gluten hit anytime soon. No wonder people freak out on diagnosis if this is what they are reading!

In fact, according to the top Celiac doctors in this country and elsewhere, the skin version of Celiac, DH, is also not caused by touching gluten products. It is a reaction from within from ingesting wheat, barley or rye. Anything else is an allergy, which makes sense.

To any of those new to Celiac out there....read Dr. Peter Green's book entitled: Celiac Disease: The Hidden Epidemic. It's the most timely source of information

out there and it's all correct.

[jerseyangel]

To any of those new to Celiac out there....read Dr. Peter Green's book entitled: Celiac Disease: The Hidden Epidemic.

I agree--if you only read one thing on the subject, make it this

[momtopa]

Thanks to all of you. I was really beginning to feel paranoid until I read these responses today. I got some inaccurate info from the book I was referring to and some other stuff I saw online. It' scary how much research we're left to do on our own and when we're newly diagnosed and reading inaccurate information no wonder there's so much confusion.

Up until this weekend, I was really feeling like I could do this just knowing the damage that would be done to my body IF I consumed any gluten. So, I feel confident that I CAN and WILL do this having the correct information in my hands. I will def try to locate Dr. Green's book. It's so nice to have a good reference to go to.

[mamaw]

momtopa

welcome, I guess if you are planning on attending the Butler gluten-free ministry you must be close to Butler?????? I must say I agree with Peter, Jersey Angel.....& a few others who have posted.....please send me a personal message with your name & phone number I will call you. Even though the church is not yet available I'm still working with newbies one on one..... I will say I'm not fond of Elizabeth Hasselbeck's book! Its great that a celebrity is talking about awareness but the info presented must be valid & correct. Since her book , I think she has seen & heard the anger from the celiac community & has tried to be more correct. When she was on Dr Oz I didn't hear her state she cheats!!

I do believe that if you are a very sensitive person you may be one who must completely stay away from gluten in all forms. As you go along you may find that you are very sensitive to things that have nothing to do with celiac disease...this is not the case for everyone.

Again I extend an invitation to help you so you don't become confused & angry over misinformation....

blessings

mamaw