Ah...how to deal with this??

[shadowkat]

As many of you know - if you've read my lj for the last five or six months, I am gluten-sensitive. This means I cannot eat anything with gluten in it. Gluten = wheat, barely, oats, kamut, spelt, and millet. Also be careful of buckwheat (cross-contamination), oats is controversial.

Here's the problem...I'm considering doing a couple of things that involve lots of activities around food and with people who love to eat foods high in glutens: BBQ sauce, pancakes, pizza, cakes, cookies, brownies, most creative chocolates/candybars, pies, bread, sandwiches, bagels, muffins, smores, beer, some wines (not all, most are fine - particularly California wines are fine), crackers...and some ice creams. Both trips will be in environments where my choices are going to be limited. They group decides. Money is a factor. And one takes place at a conference in a Holiday Inn.

I don't know what to do? Do I bring food with me? I don't want to be an inconvenience or put people out. This has been my fear from the beginning. I *hate* being a bother or a pest. I *hate* being noticed. I'm the sort who goes along with what the group wants to eat - yay democracy. This diet makes that impossible. I will get sick.

Help???

Comments

[midnightsjane.livejournal.com]

If you're worried about the Tahoe trip, I don't think anyone will feel inconvenienced by your dietary needs. I'm sure there are others who have dietary issues (I know anom is a strict vegetarian, for example). If you stay in one of the cabins (which are actually houses) there are kitchens, so you can buy what you want for breakfast etc. Don't fret, we can work around your needs so you don't get sick, I'm sure.

[atpolittlebit.livejournal.com]

And even if you end up not staying in one of the cabins I, for one, would certainly let you use the kitchen, and I believe there are groceries in the vicinity.

As Jane says, we'd work something out and think nothing of it.

[poisonapple73.livejournal.com]

Just be honest. Let people know in advance what your issues are. If they choose to try to be sensitive to your dietary needs, great, but make sure they know you are prepared to bring your own food. People are usually very understanding- I know most people check for vegetarians in the group, etc, and usually that isn't even a health issue- as long as they're prepared.

[dherblay.livejournal.com]

Ethiopian food for every meal!

Ok, that's my solution for everything.

Seriously, I know of one macrobiotic who brings suitcases full of food when he attends gaming conventions, but I don't think you'll have to go that route. While consensus may rule when choosing the dinner options, we are considerate (and enough thoughtful ATPo people know that I doubt you'll have much trouble either with having cookies forced upon you or with feeling that you're rocking the boat). (But I do need pizza twice a week or I have uncontrollable crying jags.)

[shadowkat67.livejournal.com]

Does this mean you are going to the Lake Tahoe Meet?

[dherblay.livejournal.com]

Oh, yeah, technically I'm still undecided, though I'm starting to really fret that I might miss all my friends.

[shadowkat67.livejournal.com]

Understand the indecision...struggling myself. Should hopefully come to one by the end of next week. Too discombobulated this week to decide much of anything.

[cactuswatcher.livejournal.com]

Food may indeed be a problem for you if you come, I can't deny it, but as Jane says there is a kitchen in the cabin. Don't worry that we'll be put out. I haven't kept up with what you can eat, but assume we don't have to all eat the same things. Jane says she's a vegetarian. I'm not. So it sounds like variety is going to be the big item on the menu. Ann wants to make cookies, which may be a temptation problem and also there may be more problems when we're over with the rest of the gang at the other cabin. If we knew something you can munch on (do apples or carrots have lots of gluten?), we could have some around so you won't be left out when the rest of us are munching on stuff you shouldn't have.

It's your decision. Just know we'd like for you to come.

[cactuswatcher.livejournal.com]

Oops I misread. Jane was talking about anom. Masq and I didn't have any problems going out to lunch with anim. I don't think we'd try to make your life miserable either,

;o)

[shadowkat67.livejournal.com]

Gluten - is a protein found in wheat. It is basically a wheat protein that allows wheat to have a certain texture and firmness and many vegetarians use gluten as a protein substitute - which is why you find it in all sorts of veggie restaurants and soy products - it works as a subsitute for meat.
Or something like that.

It's not in vegetables, fruits, animal meats - which have not be pre-prepared, or canned, or mass produced, or seasoned. Just the naked stuff is gluten free.

It's not in hard alcohol or wine. But it is in beer or anything with malt.

You will often find it in some pharmaceutical drugs such as regular tylenol, or benedryle - as a binder. It is also in most soups - as a thickner, and gravies, sauces, condiments, bbq sauces, candy bars, and preservatives/additives used in certain ice creams (Ben and JErry's is completely out for example, while Hagen Daz, StonyField, and Breyer's Vanilla - Natural are okay). Hershey's plain milk chocolat bars are fine. Goobers - chocolat covered peanuts by Hershey's - also fine. Nestle - is dicey. M&M's? Not fine.

And well anything that contains wheat, barely, spelt, kamut, or millet - which are cereals, breads, baked goods, pizza dough, bagels. In some ways the Atkins diet resembled the gluten-free diet - except Atkins doesn't do rice or corn.

Someone who is gluten-intolerant can handle rice and corn and potatoes. Those are my flour sources. Not sure if that clarifies.

[cactuswatcher.livejournal.com]

I would have guessed you couldn't have rice, so it's a little better than I thought. Not much comfort for you, but it is something else we can all have together, if you can come stay with us.

[wisewoman.livejournal.com]

I would say of course you should take your own food. Why take the chance on going hungry if you can't find gluten-free alternatives where you end up? And there's not even a question of going along with the crowd and making yourself sick, that's just absurd.

Because the houses all have kitchens at Tahoe, even if you stay in a nearby hotel you'll have cooking facilities available to you whenever you want, and there will probably be people "eating in" for most meals, while various combinations of others may go out at other times.

As for your other trip, that might be a bit more problematic unless there are gluten-free foods that don't require a lot of preparation? Are there staples that you know you'd be able to order at most restaurants, like meat and vegetables, that would get you through?

I think people in general will be very considerate of your needs; they usually are.

;o)

[fresne.livejournal.com]

I'd say pack it in. Food sensitivities are nothing to mess with.

And don't be afraid to identify foods of death in the moment. Lots of people have food sensitivities/allergies.

Or if we're talking Tahoe, well, let the locals know what you need. I'd be happy to bring groceries. This is the first meet that I get to bring my car.

Although, I'm glad to hear most California wines are good.

[shadowkat67.livejournal.com]

RE: Wines? Not sure why California are good and French aren't. And Celiacs seem to be in disagreement over whether it is even an issue. Some think all wines are fine. The trick is to find wines low in tanins and sulfites. So pinot noirs, smooth merlots, zifandels, light pinot grigio, light chardonnay seem to be okay. Bourgeaois (sp?) and Carbernet's tend to be too heavy in sulfites. California wines tend to be better than French or European, I told, because they don't use the same fermenting process, whatever that means.

I basically know with the first sip whether it will or not. More acidic the wine is, the less I can handle it. But then most people can't...so not an issue.

Thanks for the comment and the suggestion, very helpful in my decision making process.

[cactuswatcher.livejournal.com]

More acidic the wine is, the less I can handle it

That sounds like sulfites alright. The Europeans especially the Italians will cheapen wine with whatever and a way to make sour wine stay sour when you cut it, is to add sulfites. Sulfites bother me, too. I can only take so much sulfur in my diet.

By the way, though you are still debating whether you want to come, please go over to my post on our cabin v-3 and see what you think about the issues. If you eventually decide to join us it will make our lives easier. :o)

[shadowkat67.livejournal.com]

Read your post and the one on the board finally. Didn't find it until tonight. Tried to post on the board a while back but for some reason voy won't let me. So gave up.

I'll figure it out by next weekend.

[ann1962]

Do come if you can!

I can make all sorts of cookies and would be happy to make those which you would be able to eat. I doubt the techniques change just because the ingredients might.

I have been thinking about making those that you can eat. Cookie shipments should not be limited by such things IMO ;-)

[shadowkat67.livejournal.com]

Thanks ann,

It is kind of you. Cookies are hard. Brownies easier - maybe because there's a lot of chocolat in them to counter-act the grainyness?

I've tried Arrowhead Mills Chocolat Chip recipe and it did not agree with me. Which astonished the celiac's I met with. Most of them aren't into sweets and just want bread substitutes, I'm of course the opposite. ;-)

The difficulty with using rice, bean, corn, and potatoe flours is that they don't have the ingredient that makes wheat rise and get firm, not just yeast, it's a protein, called gluten. So you have to add stuff to them such as Xananth Gum as a binder. I've become a collector of gluten-free baking flour...not on purpose, entirely.

I don't want you to put yourself out. And it does get pricey.

Not sure yet what I'm going to do yet.

But thank you for this reply, it cheered me up.

[graffitiandsara.livejournal.com]

If you pack a lot of your own food you can snack in your hotel room at various times so that you're not as hungry when you're around people and that the temptation isn't as much of an issue. Anywhere that you can get pizza, you can also get salad, and if you're not that hungry it shouldn't be quite as hard to eat a salad while other people are eating other stuff. It doesn't inconvenience anyone if you order a salad from where ever they're ordering other stuff. It's more a question of how miserable will it make you to watch other people eat the things you can't? Being a food lover myself I can understand that issue.

As far as Tahoe, if it helps, I need to diet and I'll be glad to eat salads with you so at least you'll have company in your misery! And you'd be doing me a huge favor by keeping me from gaining the 5 pounds I probably would over that weekend!!!

[shadowkat67.livejournal.com]

Thank you sara.

I appreciate this. And you hit a bit of the nail on the head in your comment on why social activities with food are so hard. I've deleted so many posts on this topic.

And would appreciate the company.

You're coming the 22-26, right?

[graffitiandsara.livejournal.com]

We'll be there Friday June 23rd and we'll be leaving on Sunday on June 25th. I hope you can work it out to be there, I can use someone to keep me off the eating deep end!

[ladystarlightsj.livejournal.com]

Like everyone else has said, either bringing some staples with you and/or being careful in restaurant choices wouldn't be a big deal. We all understand what's happening, and I know it's hard to speak up and say "That's a lovely plan, but it doesn't work for me."

We have no problems with taking your needs (because as fresne says "food of death"= bad) into consideration. I know I wouldn't think twice about it at all.

And please come, I'd love to see you again!

[shadowkat67.livejournal.com]

Thank you.

I'm considering pulling together some sort of gluten-free travel kit. Maybe put small items. Buy containers. Need to do it regardless of whether I do the trip.

I think my difficulty is I hate to impose on others. I was raised to see it as impolite, actually rude. And am embarrassed when I see other people do it. Whenever a friend sent stuff back at a restaurant because it was right in some way or complained loudly about the service, I'd cringe in embarrassment. So here I am - suddenly - having to be that person who complains or asks. I've been told there are ways to work around it though - so I'm going to hunt those ways and have to do it soon, since this problem is not going away. Have to deal with work related social events still - being wined and dined. I really wish not every social activity had to be associated with food. Never realized until now how much that was the case.

[ladystarlightsj.livejournal.com]

Yes, a kit wouldn't be a bad idea.

And I sympathize with the idea of "I'm imposing on these people". It's a hard thing to work around in your head, I know.

[(Anonymous)]

There may be some health food stores & even restaurants in the area where you can get gluten-free prepared food. There's a thread on various activities & amenities (http://community.livejournal.com/atpobtvsats/46522.html) in & around Tahoe in the ATPo community's LJ; you can ask about restaurants/food stores if the info isn't there already. And there are online gluten-sensitive community or discussion groups, aren't there? Someone in 1 of those might be able to tell you what's available nearby. But it's probably a good idea to bring some foods for yourself too, esp. since the cabins have kitchens.

As for your conference, there's usually someone working either for the group having the conf. or for the hotel whose actual job it is to answer questions like yours & help you make the arrangements you need. Some conf. registration forms even have a space to fill in for dietary considerations. If you inform the hotel/conf. people ahead of time, they'll probably be able to take care of your needs. They get paid to do it, so you're not being a nuisance to them. And you certainly won't be to your fellow ATPosters, who want you to be at the Gathering!

I'm surprised glutens are used in some chocolate bars. Checking the labels of some of my favorite brands, which I just happen to have right here @>), I don't see anything wheat- or gluten-related in the ingredient list of the G&B Maya Gold (only traces of nuts & dairy mentioned), & the Dagoba bars specifically say "gluten free." Unfortunately, the wheat-free cookies I mentioned way back in another thread in your LJ have oats in them.

"I'm the sort who goes along with what the group wants to eat - yay democracy. This diet makes that impossible. I will get sick."

Well, good democracies have procedures to prevent the "tyranny of the majority," & I'm all for that. The prevention part, I mean, not the tyranny. And we'll be much less bothered by your taking care of yourself than by your getting sick!

[shadowkat67.livejournal.com]

Okay...let me try to explain about organic chocolats. It has to do with the fact that they are high in caffeine, higher than most hershey or regular chocolats. Why? Ah. They use more coco and less milk and other products. So I reacte to them. Many many good chocolats have glutens - lindt does. So do a lot of Belgian chocolats. It doesn't say it does - it's in one of the preservatives or fillings. I had a lindt truffle and felt like I swallowed a brick.

See like most gluten-sensitives, have more than one issue going on here. Acidic stomach, small stomach, sensitive to caffeine and highly addicted to it - I adore the smell of coffee for instance but cannot have it. At all. Can't have pseudophredrine either. For the same reasons. I get sick. But in small doses like hershey's chocolat? Or hot coco with steamed milk? It comforts me. In high doses. Bad.

I posted the same query on the NYC Celiac Society Meet-up Board that I am a member of. They are a little nutty over there - the suggestion was to bring along my own toaster. Okay. Ahem. No. Honestly, let's try to be reasonable, shall we? So yes, I posted this in more than one place - I go to about ten sources of information when I have a problem, not just one. Then take the bits and pieces of information that work, let go of the rest.

Regarding the last - comment, it's not about the tyranny of the majority. They aren't forcing me to come nor did they ask me to. I do not want to impose myself on anyone and I do not want anyone to feel guilty. That's wrong. That's why I posted this, to let them know my issues up front, to ask them how best to handle it.

What it is about is being considerate of others needs and desires and not forcing my own issues on to them. I don't want to inconvience or make anyone uncomfortable. It's their vacation too after all. Which they are paying for.

I don't like imposing on people. I like to be self-sufficient - I'm very like Buffy and Angel in this regard. It's a family trait. My entire family is the same way.

[(Anonymous)]

@>)

Ah--I didn't realize caffeine was also an issue. Assuming I can come to Tahoe, I'll be bringing a variety of chocolate bars, incl. some milk chocolate bars, which have a lower percentage of cocoa solids (52% & 37% on the ones I just checked). I hope those would be OK for you. One of them is made on equipment also used for products that contain wheat--are trace amounts a problem for you?

Gotta say I don't get the "toaster" suggestion from the meetup board at all. Besides, we're gonna have kitchens, & there are probably already toasters or toaster ovens there...are some people so sensitive to gluten they can't eat gluten-free bread toasted in the same toaster used for wheat bread? I was thinking someone in a less locally based group might live in or near Tahoe or go there often on vacation & know where in the Tahoe area you can find gluten-free products in stores or restaurants where the management/staff are aware of the gluten problem. Either way, the "gluten-free travel kit" sounds like a great idea, whether it's your main source of food or supplemental.

The "tyranny of the majority" bit was meant as a joke, off your "yay democracy" comment. It referred to the food-conformity issue, not whether anyone was forcing you to come. And by the way, at least some of us are asking you to come! I don't know of anyone who doesn't want you to be there. I don't think anyone thinks you'd be imposing yourself on the group, & I don't understand why you think any of us would feel guilty. If I can presume to speak for the group, we don't want to impose on you or for you to feel guilty. We want to be considerate of your needs. I think you overestimate how much this bothers other people, esp. your friends. And it doesn't seem to cut both ways for you--you're the one who suggested a couple of years ago that we have my birthday get-together at a vegetarian restaurant, even after I said I didn't want to restrict other people's choices!

Speaking of which, my own experience both as a vegetarian & as a religious Jew puts me in the position of having to ask for accommodations from others fairly often, like having a meet on Sunday instead of Saturday, or taking time to ask questions about ingredients at a restaurant. I'm not always comfortable about this myself, but I've found ATPo one of the most considerate groups I know when it comes to acceptance & accommodation of these limitations, even though in my case they're a matter of choice & not necessity.

As for being self-sufficient like Buffy & Angel, remember, both of them needed to learn to rely on others as well as on themselves. And Angel had some pretty severe dietary restrictions himself...but his friends never gave him a hard time about it.

[ann1962]

Assuming to get your replies sent, I hope you see this. A link today on my flist is something I thought you might like to see. http://glutenfreegirl.blogspot.com/ I found a gluten post, just in case you have these filtered. Hope all is well!

[shadowkat67.livejournal.com]

Hanging in there. Thanks for the link - turned out to be pretty useful and to contain the best description of gluten and the condition I've found so far. Also like how she states you can either be "celiac" or "gluten sensitive" (ie. made uncomfortable by glutens or sick but not in the same way someone with celiac disease is - most celiacs refuse to see this distinction. So for a while I was taking the stance, okay, might as well just treat myself as pure celiac, easier than trying to explain gluten sensitivity to everyone. Human beings like "definites" or things clearly delineated. Gray areas make people uncomfortable and antsy, I think. )

Haven't been posting or engaging much because I can't at home anymore, my system is so screwed up that it either disconnects me halfway through, freezes so I can't disconnect or the third option - tells me there's an error and must shut down costing me the entire email. So am waiting until I get my lap-top before doing much at home. Can't do much at work - since internet usage is heavily monitored, due to the fact that the company has so much of its own services and systems hosted on the web. Some sites we simply can't visit - because they are considered entertainment.

Very frustrating.

And well, the universe and I have been at odds of late. I'm hoping things will change soon. I think they will. Just have to ride out this wave.

Hope you are okay...sorry haven't been able to read yours or others journals lately.

[(Anonymous)]

There you are!

I'm glad to "see" you. I've been wondering how you're doing & what progress you're making toward getting your online access back, not to mention reconstructing your records & feeling a little more secure. Sorry to hear your company is keeping such a tight rein on Internet use--can't they take your circumstances into account & cut you a little slack for a while?

As for grey areas, this human being likes 'em, & likes full-color areas even better. I get uncomfortable w/only 2 options, & w/the idea that only a narrow little line connects them.

And I hope you ride out that wave & find calmer waters soon. And that you're able to see this before too long!

--anom