I Keep Getting Glutened!

[Bravie]

Hi, I came in to this forum in the middle of last year, I was dx'd in april of last year and I still can't seem to get this diet down exactly how I want it. I replaced most of my cooking wear, still in the process of buying some dishes exclusively for me, changed my body wash, hand soap, and lotion, and I cleaned up my workspace. (I couldn't change my shampoo because I can't find anything thats gluten free that would agree with my hair, so I had to keep the gluten kind. But I wash my hands everytime before I eat/if I touched my hair)

I've had to stop eating casein as well, which really did help me alot, although I do cheat on casein sometimes and often pay for it later. I've stopped eating at restuarants too. I also live in a household where people eat gluten, which is beyond my control (I plan to move in with my fiance in a few months, he agrees to having a gluten free house, he is a diabetic and is looking for a healthier diet anyway.)

But what I am very angry about is that I feel like I get glutened too much. I got glutened about 15 times last year, most of the time I didnt even know what glutened me. I already have a few stomach problems even when im not glutened (occasional gas) When I do get glutened, I break out in this extremely itchy rash, i get D and C, cramping, gas, mood swings, and sometimes joint pain. I got glutened a few days ago, but I do know what it was. I used to wrong soy sauce for my dinner.

My question is why do I get glutened so often? I am very strict about keeping a gluten free diet, even though I still slip up alot. I'm very careful about cross contamination. I can see occasional glutening, but this often? It is really getting on my nerves. Did this happen to anybody else? Thanks.

[kbtoyssni]

One red flag is the shampoo. If you touch your hair, then touch a counter or a doorknob, you may be spreading gluten around the house. Even washing your hands before you eat isn't going to help that. I personally would keep looking for another shampoo.

Living in a house of gluten eaters is tricky. Do you share sponges to wash dishes? Did you replace your toaster? All wooden spoons and collenders? Do you know for sure no one is double dipping in your condiments? Do you have pets that eat gluten food? What about at work - any possibility for CC there?

My next thought is maybe it's not gluten giving you these symptoms. You may be intolerance to other foods that give you the same symptoms. Peanuts do it for me. Soy and casein or nightshades do it for others.

Sounds like you have too many "oops" moments, too, like using the wrong soy sauce. Is there a better way you can label your stuff so this doesn't happen? Like having only one soy sauce in the house - the gluten-free one? Or putting colorful stickers on yours? Or having a separate shelf of your stuff?

And maybe it's that you get glutened often enough that you're not healing so anything will aggravate your stomach. I'm not sure how you were originally diagnosed, but if it was by blood test you might want to have the test repeated to see if your levels have gone down.

Just some ideas, hopefully something here will help. Good luck!

[Bravie]

Thanks, I don't use any wooden spoons or collenders, I have a cat that eats gluten food. I don't see what the difference would make if I changed my shampoo. I don't wash my hair very often and since I live with people that eat gluten, they are probably contaminating everything in this house. And that is completely beyond my control. This is way too difficult for me to handle, I slip up so often that I might as well go back to eating gluten. And I don't have too many "oops" moments. That was the first time I accidently did that with the soy sauce, and that was because I was having a busy day.

I know casein screws with my stomach. I can have soy and all that other stuff. I forgot to meantion that I do feel much better than before being diagnosed. I just need to figure out a way to stop slipping up so much. I can't put my food on a different shelf here. We don't have enough shelves to do that and we don't have alot of space to put things.

[JNBunnie1]

Thanks, I don't use any wooden spoons or collenders, I have a cat that eats gluten food. I don't see what the difference would make if I changed my shampoo. I don't wash my hair very often and since I live with people that eat gluten, they are probably contaminating everything in this house. And that is completely beyond my control. This is way too difficult for me to handle, I slip up so often that I might as well go back to eating gluten. And I don't have too many "oops" moments. That was the first time I accidently did that with the soy sauce, and that was because I was having a busy day.

I know casein screws with my stomach. I can have soy and all that other stuff. I forgot to meantion that I do feel much better than before being diagnosed. I just need to figure out a way to stop slipping up so much. I can't put my food on a different shelf here. We don't have enough shelves to do that and we don't have alot of space to put things.

You may be getting glutened by the cat food. But think about this. Ever open your mouth in the shower? Ever get your shampoo bubbles in your eyes? The shampoo, I think, is more of a threat IN the shower than out of it. People tend to have their mouths open when under the shower stream because it's easier to breathe, and most aren't even aware of it. Even if you don't, that sudsy water is rushing past your face anyway, and is still a danger. I actually use Ecover dish soap for my shampoo and my hair is nicer than ever before, however wierd that sounds. Ecover is bio-friendly or whatever, so it's more liquidy and smells really good too.

But anyway, I would encourage you to keep trying with everything, considering how much better you feel already. You're doing great! Things will probably get much easier when you move in with your guy, so there's that to look forward to. Oh, and you said you get the itchy rash? I don't think you can really blame that on any other food intolerances, can you?

[Phyllis28]

I agree with JNbunnie1 the most probable problem is the shampoo. A beauty supply store or salon maybe able to help you find a shampoo suitable for your hair. You will then need make sure it is gluten free.

My cats are happy to eating gluten free cat food. In my opinion you should change the cat food.

If you have a bedroom of your own you might consider setting up a mini kitchen in it. A microwave, small refrigerator, a crockpot, cooking tools and/or a kitchen cart with cabinets. This will minimize cross contimination.

[Bravie]

I agree with JNbunnie1 the most probable problem is the shampoo. A beauty supply store or salon maybe able to help you find a shampoo suitable for your hair. You will then need make sure it is gluten free.

My cats are happy to eating gluten free cat food. In my opinion you should change the cat food.

If you have a bedroom of your own you might consider setting up a mini kitchen in it. A microwave, small refrigerator, a crockpot, cooking tools and/or a kitchen cart with cabinets. This will minimize cross contimination.

The mini kitchen thing sounds like a good idea, but I'm not that wealthy. I can't afford to buy a microwave and a bunch of cabinets. I'm currently unemployed atm so thats really hard to do.

[tarnalberry]

I'm guessing that you have at least two shelves - you can split them between yourself/your fiance, and your roommates. (Or whatever distribution is fair.) There *is* a way to split it, even if you only have four feet of shelving, you can split it in half. You can store your things in your room if you have to, even if it's a very tight fit. (I know how it goes... I lived in a dorm room with all my possessions for four years... 80 square feet to your name isn't much!)

Also, talk to your roommates. Find a compromise - ask what they can do to help you not get sick so often. Telling them "clean up after yourself" and "don't use my stuff" apparently hasn't worked, so ask them what they are willing to do so that you aren't sick so often, and work from there.

[Bravie]

I'm guessing that you have at least two shelves - you can split them between yourself/your fiance, and your roommates. (Or whatever distribution is fair.) There *is* a way to split it, even if you only have four feet of shelving, you can split it in half. You can store your things in your room if you have to, even if it's a very tight fit. (I know how it goes... I lived in a dorm room with all my possessions for four years... 80 square feet to your name isn't much!)

Also, talk to your roommates. Find a compromise - ask what they can do to help you not get sick so often. Telling them "clean up after yourself" and "don't use my stuff" apparently hasn't worked, so ask them what they are willing to do so that you aren't sick so often, and work from there.

Actually, I live with my parents and they think i'm crazy. They won't split the shelves because they pay the bills so they think they own everything. They take my condition very lightly, not really caring about cross contamination much. It's very frustrating and stressful on me to have to deal with this every single day. Not alot of people I know understand celiac disease and how its treatment works. I get contaminated most of the time due to other peoples' carelessness.

[Phyllis28]

Bravie,

The mini kitchen can start out very small and grow as you have the money. In the house or from a friend you could find an old shelving unit (free) like a bookcase to at least store your food and even your kitchen tools. That way at least your non-perishable food is out of the kitchen.

If you put the word out to family and friends that you would like a microwave and refrigerator to keep you healthy someone may donate a used one they don't need anymore.

Hope everything goes well.

[Yellow Rose]

My suggestion would be to put all your food in ziplock bags. That way nothing falls in that could cross contaminate you. I agree with labeling with bright stickers so that the others in your home won't get in your food accidently. I live in a house where gluten is everywhere but I have managed in the last 6 months to get glutened only a couple of times. I put all my stuff in ziplock bags. Good luck to you and I will keep you in my prayers.

Yellow Rose

[Bravie]

My suggestion would be to put all your food in ziplock bags. That way nothing falls in that could cross contaminate you. I agree with labeling with bright stickers so that the others in your home won't get in your food accidently. I live in a house where gluten is everywhere but I have managed in the last 6 months to get glutened only a couple of times. I put all my stuff in ziplock bags. Good luck to you and I will keep you in my prayers.

Yellow Rose

Thanks. I went shopping today and bought some zip lock bags. The thing that worries me is that me and my mom share the canola oil in our house (It's a gluten free brand but i'm worried. I'm afraid that maybe I could get contaminated from doing this. I just thought about it a while ago.) It's in a container that you pour out of, but idk if I should be worried or not.

btw, I am 20 years old and I just started getting noticeable symptoms early last year, just before being diagnosed.