Confused As Ever

[HopeMum]

I'm conflicted about a lot of information re contamination. I've read the posts below re making kitchen gluten free, throwing out colanders, wooden spoons etc. I didn't do any of this, just put through dishwasher and keep separate toaster and cutting board. Here's why I'm confused, I'd like to someday eat in a restaurant again but I'm supposed to tell them to use a 'clean' pan to cook my 'naked' chicken?? If it is so difficult to maintain my own gluten-free kitchen (airborne flour!!) how can I possibly expect to get it with someone else cooking??

Help please

Claire

[LandonL]

mum, I am completely and totally with you. I am SO VERY confused about so much of this. Some say they revamped their whole kitchen, and all that stuff, and I do agree that is probably a good idea and I have begun my journey with that. And the same people say take your own food everywhere cause you might get glutened or cc'd, and that any small amount of gluten is just as bad as a large amount even if you don't have symptoms. Then they say they eat out every once in a while and just make sure to talk to the manager and staff, and that they didn't have any problems. But then some people have symptoms and some people don't, so how do they know they didnt have any problems, maybe it just wasn't enough to provoke a reaction. It all seems so contradictory to me.

[msmini14]

My house is gluten free; everything and we only do that so I don

[mushroom]

Well, you are both right in many ways. Nobody here (or very few) would ever assert that this is easy, especlally ln the beginning and it's all such a pain in the neck and so difficult, kinda like algebra!!! But when you persevere.day by day, and keep doing it, it does become easier and all this stuff is absorbed internally as a way of life and becomes second nature (unlike algebra for me ) You also develop a thicker hide and cease worrying about what other people think or how they are reacting to you, because you don't care; what you do care about is your health and how to maintain it, and other people be damned if they are curious or think you are weird. For those who are not used to being assertive in restaurants, the restaurants are there to serve you, the customer, and that means that you should let them know what you want (and what you *need*) and if they don't want to accommodate you they can always tell you and you don't go back there. Fortunately, in these economic times, they will be more willing than ever to accommodate you, I believe

And yes, each of us has to work out for ourselves what level of cross-contamination our bodies will tolerate, whether we can eat food "prepared on the same lines as", whether we have to get rid of *all* our kitchen stuff or just some of it, what to do about personal products. There are really no rules per se; others make suggestions and tell of things they have had problems with, how they handle certain situations like families and eating at friends houses. But ultimately you have to work out your own plan, what works for you, take what applies from the information provided, and discard the rest

Good luck and good health to you both on your gluten free journey.

[sbj]

Here's why I'm confused, I'd like to someday eat in a restaurant again but I'm supposed to tell them to use a 'clean' pan to cook my 'naked' chicken?? If it is so difficult to maintain my own gluten-free kitchen (airborne flour!!) how can I possibly expect to get it with someone else cooking??

I am in the same boat as you; it seemed quite ridiculous. I'd wager that since flour stays airborne for 24 hours plus there's not a single legitimate gluten free restaurant out there unless they monitor to make sure flour never crosses their front door.

If we think long enough about it, there is really no way to avoid some contamination. Gluten free flours contain gluten! Do you ever open a car door or a door to an office building or read mail or pick up a phone or touch the newspaper or pick up someone else's cup and plate or . . . ? There's a chance that every one of these items has been touched before you by someone who handled - gasp - bread! If you then touch a piece of non-gluten food or accidentally touch your mouth then you've been glutened. How can we eat in a restaurant if the patron before me ate gluten food and dropped a crumb or two? How can I possibly watch the servers to see that they are washing their hands after clearing a plate with a piece of bread? If they wiped a table off that had crumbs and then fill my soup bowl how do I know that a crumb didn't get in there somehow?

We can't do all of these things. We can't avoid gluten to that extent.

Here's my advice: Do your best. In 6 months or a year go back to your doc, get the celiac panel run again, and look at the results. If they're all good then you'll know you are taking adequate precautions. If you still have an issue then you'd better tighten up a bit. Try a reasonable and workable approach for you for 6 months and then get retested. Then adjust as appropriate.

"It all seems so contradictory to me."

Yup! You'll get a lot of that here!

[LandonL]

Well, you are both right in many ways. Nobody here (or very few) would ever assert that this is easy, especlally ln the beginning and it's all such a pain in the neck and so difficult, kinda like algebra!!! But when you persevere.day by day, and keep doing it, it does become easier and all this stuff is absorbed internally as a way of life and becomes second nature (unlike algebra for me ) You also develop a thicker hide and cease worrying about what other people think or how they are reacting to you, because you don't care; what you do care about is your health and how to maintain it, and other people be damned if they are curious or think you are weird. For those who are not used to being assertive in restaurants, the restaurants are there to serve you, the customer, and that means that you should let them know what you want (and what you *need*) and if they don't want to accommodate you they can always tell you and you don't go back there. Fortunately, in these economic times, they will be more willing than ever to accommodate you, I believe

And yes, each of us has to work out for ourselves what level of cross-contamination our bodies will tolerate, whether we can eat food "prepared on the same lines as", whether we have to get rid of *all* our kitchen stuff or just some of it, what to do about personal products. There are really no rules per se; others make suggestions and tell of things they have had problems with, how they handle certain situations like families and eating at friends houses. But ultimately you have to work out your own plan, what works for you, take what applies from the information provided, and discard the rest

Good luck and good health to you both on your gluten free journey.

mushroom, that is exactly what i'm confused about, being new to this and all. Everyone talks about how everyone is different, and what each individual can tolerate. Is this the aspect that I should be striving for? what my body can tolerate? cause I have eaten out at chilis and outback from the gluten free menu a couple of times and not had "problems" and my body seems to be tolerating things just fine. But what scares me is everyone says that ingesting the smallest amount of gluten is doing damage either noticeably or silently. And I find it relatively hard to believe that at any public establishment that you could eat and not imjest some gluten? and I dont' know what amount of gluten will cause a health problem that will eventaully kill me. I am so TERRIFIED of dying from this disease. I am 26 and every time I feel like i'm getting to the acceptance point I keep thinking bout my wife, my two year old daughter, and my son on the way, and how I want to live a long happy healthy life with them. You hear so much different stuff, and then you think well let the medical people give you the real answers since they are doctors and they are "experts" at this, but then everyone talks about how they were misdiagnosed for so long. I JUST DON'T KNOW WHAT TO BELIEVE!

[Ahorsesoul]

Hey, don't worry about dying from this disease. My father will be 90 next month. He's a celiac and has never followed a gluten free diet. Yes, he could be a lot healthier if he'd know to follow a gluten free diet but he's still up and running.

Just try your best to follow a gluten free diet. I went 45 years before I found out I was a celiac and went gluten-free. So relax and do your best. You will be healthier for being gluten free.

I do eat out in restaurants but only if they offer a gluten free menu. I love eating out. It's one of my favorite things to do and when I go out I do not want grilled chicken or a plain salad. I can do that at home, I want something special. There are gluten free places. You will have to hunt them out. Keep asking at all the places around you and some place will start a gluten free menu.

Enjoy your life being gluten free and healthy.

[mushroom]

Here are my personal "rules"

1. Never knowingly ingest gluten.

2. Do my best to not unknowingly ingest gluten.

3. Create a gluten free pantry.

4. Always carry gluten free food with me. Doesn't mean I have to eat it, but it's there if I need it.

Those are my only "rules". Along the way I have gone to gluten free cosmetics and hair care products. At first I was hesitant to eat out at restaurants, but have greater confidence now (have never suffered any gluten symptoms from restaurants), and they are a lot safer than friends' houses. I would rather go out to dinner with friends than eat at their house.

As for dying of celiac, most unlikely. Most people with celiac are undiagnosed and never even know they have it, or choose to ignore it. Some are so lucky they get away with it altogether (except for the gastric problems usually) and never develop any of the other autoimmune diseases. I was not (self)-diagnosed until 67; however, by then five years before I had developed psoriatic arthritis. But I had had celiac or gluten intolerance all my life. And no, you can't unfortunately leave it to the medical professionals. They know little or nothing about celiac, ditto nutrition. You just have to take charge of your own life and tell your doctors what you need, what blood tests are necessary, etc. (That is, after doing your research) They are generally so surprised that their patients know more than they do that they go along with your requests (this is on the PCP level, does not apply to gastroenterologists because they know *everything* )

At any rate, all this is just my take on celiac, as I said before. Everyone develops their own philosophies and mode of operation. But you do need to make yourself as informed as you possibly can, so you do know more than they do.