How Do You Explain?

[hypersof]

Hi all

I am back for some help, as usual

Long story short, I am 1 month gluten-free, just got over a last-week glutening, feeling normal again...I love it!

The thing is, I am still fairly new to all that...feeding myself is pretty ok now, but I still don't quite know how to handle other situations (going out/ travelling safely, mainly)

I think I was glutened by a gluten-free menu at a sushi place last month, and glutened myself (with old cookware not yet replaced at home) last week (now everything is replaced!) So right now, I am in a place where I only trust my own cooking.

But people offer to cook for me all the time...so far, I tell them not to worry about me and I eat before going...but it's not so easy!

For instance, I will be back in France next week, at my in-laws for a wedding, and I am not sure how I'll handle that. It's the first time I see them since going gluten-free, and they know I am gluten-free, but not sure how much they know about it...I just hope they'll understand if I cook stuff for myself and never eat the same thing than them etc.(yeah, french people & food, long story!) But I don't know how else to do it, cause I really don't want to go back to feeling awful for 10 days !! (no way! and I want to feel good for the SIL wedding, where I'll meet the extended family...)

Plus, I got friends inviting me for dinner tonight, telling me they could cook something with potatoes, ham, cheese, "that should be fine for me".

I let them know they shouldn't worry and I'll make sure to eat before I go...but the difficult part is, they are so nice to worry and cook stuff I can eat, but don't have a clue about CC, so I find it very difficult to tell them "yes, sweet from you but no, thanks can't eat it anyway"...know what I mean?

So, in the end, my plan is to stick to eating things I prepare myself (for now at least) AND try not to upset people, BUT at the same time educate them about CC...tough though, how do you guys do that???

...any advice welcome

thank you

Sophie

[bridgetm]

I'm with you in that boat... I'm two weeks in (three or four if you count the not-so-dilegent, experimental weeks) and am debating how to tell my mom that she can't cook me a batch of rice in the same 20+ year old scarred pot that she uses for spaghetti. I'm away at school so she doesn't see how a glutening affects me; only the friends I eat with frequently have come close to understanding CC. It's tiring having to explain the concept to everyone who won't take "no, thank you" for an answer.

[masterjen]

I have no advice, only empathy (sorry!). I'm now 6-weeks post celiac diagnosis, and have been gluten-free and lactose-free for this time. In the past 4-5 days I've also been following a very strict diet involving grain-free, bean/lentil-free, and night-shade free (and if I don't improve I'm planning on going totally lectin-free, which will add in milk and eggs, I believe). Anyways, I am also finding it very difficult to handle people acting offended if I say "no" to their offers of cooking dinner or eating dinner with them at a restaurant that claims to have gluten-free meals (to this latter one, I say, "The meals are gluten-free, but will you thoroughly clean your counters, use different cooking utensils and pots" and they say "no, we can't guarantee our cookware/utensils haven't also been used for cooking food we're simultaneously cooking with yours that do contain gluten"). My mom is the only one I'll trust (in addition to myself), since she's been through this with me the whole way.

[buffettbride]

I would simply tell friends that you're still really new to the diet and you feel safest when you eat food that you've prepared yourself. Let them know that you appreciate the offer and once you feel you have the diet under control, you'll feel more confident in explaining the proper cooking methods for you.

You're SO new to eating and preparing food gluten-free it is impossible to expect someone else would do it and not mess it up. If they are good friends, they'll get there, though. Perhaps you can bring a delicous gluten free item to contribute to the feast (but make sure your portion stays separate as not to get contaminated)?

[hypersof]

I would simply tell friends that you're still really new to the diet and you feel safest when you eat food that you've prepared yourself. Let them know that you appreciate the offer and once you feel you have the diet under control, you'll feel more confident in explaining the proper cooking methods for you.

You're SO new to eating and preparing food gluten-free it is impossible to expect someone else would do it and not mess it up. If they are good friends, they'll get there, though. Perhaps you can bring a delicous gluten free item to contribute to the feast (but make sure your portion stays separate as not to get contaminated)?

thanks for all the input!

I'm glad to see I am not alone there -well, for sure I am not the only one, but it feels good to hear everyone's experience!

and buffetbride, you are so right! that's pretty much what I am trying to do in general -had a great conversation about that with some friends tonight;

and if there is any possibility (and enough time) for me to cook a nice gluten-free treat at my in-laws, to participate, I am sure they will appreciate!

thanks again for the input

and as usual, any other wise advice is welcome

Sophie

[detritus]

I can totally relate! I love France, and love the food, but now, post-celiac diagnosis, I wonder how I could ever be safe eating there again. They put flour in everything! I just came back from a week in Mexico, and since I'm only 2 months gluten-free, I was quite nervous, but everything was fine because wheat flour is not so integral to their cooking; they are much more corn reliant.

I am now going home to visit my family, and am cooking dinner myself to stay safe. But my brother is making "gluten-free" bread for me, and I'm terrified! He makes a lot of bread, so I know all of his baking equipment has been coated in flour at some point.

The worst thing is that he tested positive for the anti-bodies indicating celiac, and "went off gluten " for a year, but since he never had symptoms he went back to eating gluten. So he'll never understand how sensitive I am to even the tiniest amounts, and will probably think I'm being over-obsessive. My goal in this trip is to try to get him to understand how he is hurting his body by continuing to eat gluten, but also to remain unscathed myself. I wonder if I could pretend to eat it and then hide it in a napkin.......

[masterjen]

I wonder if I could pretend to eat it and then hide it in a napkin.......(quote)

LOL! I've done this . . .

[newgfcali]

I just had dinner at a friend's house last night. They know about my "issues" and had offered to cook a whole meal gluten-free. I explained that it wasn't just gluten, but soy, casein, nightshades and yeast as well, and that I would just bring my own dinner so they could serve whatever they wished and not worry about my diet. When I was there, I explained further about gluten lurking in dishes, pots and pans, cooking utensils, on countertops, and I think they understood. They weren't offended at all. I brought some gluten-free cupcakes (that's another story -- go see the thread "Completely Disappointed") to share with everyone and most of them said they were good. I also brought a store-bought normal dessert in case they didn't like the cupcakes.

If they're good friends (or family members), they should understand your needs. If they don't understand, try the analogy that for you gluten is like peanuts or shellfish to someone allergic to those foods. The tiniest bit can send them to the ER. Most people understand that sort of allergy.

Stick to your guns. You're doing the right thing by protecting your health first and worrying about others feelings second.

[butterfl8]

Oh yes, I understand. All you can do is possibly repeat, "yes, even a crumb will make me sick." And let others know that we have differing levels of sensitivity. So some of us react to the crumbs, and some don't react to the crumbs, but are still damaging thier intestines. My family was hurt by the fact that I brought my own food to the gluten free Easter dinner this year, but at least I didn't get sick. I decided they could either have my company and I eat my own food, or nothing.

So for those who want to cook for you, If you feel comfortable making fun of yourself, I say that I'm super paranoid and due to my sensitivity, I have to eat things I've prepared myself. That way I know I can relax and enjoy the company and the time I'm spending with them, rather than worry about what I'm eating, how my stomach is reacting, how long until I get sick, and how many weeks I'll be feeling like hell. That usually works. . . except on my family. . .

Thank god for my wonderful husband, who says take the family out to the curb. (except in other terms )

-Daisy

[hypersof]

everyone, THANKS!

turns out, I think I am nervous sometimes 'cause you need time to make people understand all that, right?

(considering how much time I need myself, just to understand what's happening to me...no surprise!)

last week I was a little overwhelmed at a dinner party, didn't eat anything and didn't get to explain much, as it was crowded.

yesterday night, same friends but little people, and we had a great talk where I could explain CC etc. the fact that we were just 5 people made it so much easier! I could simply explain the basics of celiac disease and cc, and then tell them I was so new at this, that I needed time to adjust first, and then I'll try to handle people cooking for me -or cooking with them to explain and "train" them, actually.

They were completely understanding

I did find it helpful to explain it wasn't exactly an allergy (no immediate, life-threatening reaction), but similar enough that I didn't want to risk having any contact even with crumbs...(both for long-term risks, & the 10 days of BAD symptoms following a glutening)

Next week is a new challenge, as I'll fly back to France and stay at my in-laws for a very short time (3 days), with the wedding in the middle...I think I'll stick to eat my own things and explain little to most of the people.

Hopefully I'll just have enough time to explain better to the closest family members;

I'll take the risk of looking plain weird to the other ones

Fortunately, my husband is already there, and I think he is doing a good job preparing them to hear all that

gosh it's great, just being able to discuss these practical difficulties with you guys...I find it overwhelming at times, and the board is a great help!!

Sophie

[allisons]

Part of what I've been doing is using one particular form of CC as an example that kind of shocks people into realizing how crazy difficult it is "Michael and I have to have separate peanut butter jars because if he makes a sandwich and double dips the knife, I can get gluten the next time I make a sandwich"

The other thing that seems to strike chords of understanding (at least in this area...I'm not sure it'd work culturally, everywhere), "It's kind of like having to keep a Kosher kitchen." So if the people you're talking about know enough about Jewish culture to understand what kind of undertaking that is, they'll say, "Oh, wow," and usually they'll then stop offering to feed me.

On the other hand, my truly close friends, the ones who really love me and want to be there for me, I almost believe they'd be able to pull it off. They've been asking exactly what they need to do, listening to me when I talk about hidden sources of gluten. They've also said, "Well, we know you're not ready yet, but let us know"

So maybe it's not just about knowing how to say no, but also how to say yes.

[Welda Johnson]

It's good to see so many new people here--Welcome! I've been gluten free for quite a long time, and one of the biggest lessons I've learned is that our own health MUST come first. I usually take my own food wherever I go, and, finally, hardly anyone ever says anything anymore. They have just become accustomed to the fact that I can only eat meat, fruits & vegetables, and even then I have to be very careful about how things are prepared. I'm actually thinking that they are pretty glad that the pressure is now taken off of them. No one wants to make another person sick with their cooking, or even when taking someone out for a nice meal. Chicken & salad with tomatoes or salad with refried beans & rice have proven to work for me at restaurants lately, so that is a relief. I just have to be diligent in remembering to say, "No cheese, croutons, etc. on anything!" I take along my own salad dressing or seasoning salt, so that is another precaution. It does become much easier as time goes by, and as you realize that you can feel good again. It's up to you to be persistent, and by taking your own health seriously, other people will take you seriously too. Best wishes for excellent health and a new life filled with joy. Welda

[hypersof]

thanks for the tips

I think the peanut butter (I would use nutella or jam in France, we're not so big on peanut butter and the kosher examples are great!!

will try those and post the feedback...

I always tend to be a bit nervous/ anxious before these "going to somebody's place/ explaining" moments...I am so new at his! but I have to admit, so far it always went well! just need a bit of time & practice for all that to settle/ become 2nd nature to me

[tictax707]

I have so been in this boat before too. I know people are well meaning and really just want to help, but given that there are SO many places that gluten can hide and people don't know to check... I would definitely stick to your guns about bringing your own stuff. I agree that many of the examples mentioned are really good. You can also say that since you are so new to the disease and extremely sensitive, you just have to play it safe until you can get a solid handle on it, and then you can teach them about it once you are a master. There are a select few of my friends that I do trust enough to make me stuff, and they are constantly asking me questions the entire process. It shows me they are really thinking and trying to understand how things go. If they weren't checking in with me all the time, I'd be all nervous. I hope everything goes well!!

[SGWhiskers]

Shortly after my diagnosis, I sent out a mass e-mail to family and close friends. In it, I had a description of Celiac disease, a description of how gluten affects me, and why dispite their great cooking, I would be bringing my own food from now on. I emphasized that their company was what was important to me and that I would say no when they offered to cook for me and they shouldn't take offense. I thing seeing it in a mass e-mail made it go over easier because no one could think "well, she just doesn't like my cooking or think I'm good enough for her fancy diet." Mom offered at every get together to do something. Initially, I would say just save some meat unopened, and I will make a burger/chicken thigh etc. when I get there. Then we added veggies still in the bag from the grocery store or the freezer bag. For a year, she could watch how I handled food and learn a little at a time why I used my own can opener or why I didn't use her BBQ sauce. After telling me the steps for how she was going to cook my last meal, I told her she was ready to solo. It has been 20 months. I was really proud. She actually made my meal seperately even though the main dinner wound up being gluten free because she used redbridge and a disposable pan. She was paranoid she would screw it up. Anyway...I'm off track.

My sisters in law don't do anything special except tell me a few days in advance what they are cooking. That usually works fine becuase I try to have something similar. Spagetti if they have lasagna etc. My friends and I usually go out to eat, and I always say yes I can go if... We go to one of these restaraunts (insert list) at an "off" hour such as 11:00, or 2:30-4:30 or 8:30+. I also show them my purse full of food and warn them that I will pull it out if the meal/waitress/cook seems wrong. I just have the meal boxed for hubby.

I was really glad that I sent out the mass e-mail and I would recommend it to every new celiac. It answered the basics and people could ask me questions as they developed a curiosity. It also spared me witnessing the eye-rolling that some relatives were bound to have. A year later, one relative that never asked a question and I'm sure was the biggest eye-roller has started to gently comment on my dinners and ask "what kind of noodles are those" and "so, what can you eat". Oh, it also spared me explaining Celiac 45 times.

I wonder if I can find that letter.

As far as France goes, I have no advice. I take my own pan and groceries to TN when I visit the inlaws. Only safe way. Maybe have some necessities shipped to their address and bring a foil pan, multipurpose cooking spoon, and can opener. Oh, when I'm at my inlaws, I ask that they leave a little of everything in the container or that I get to the container first and take out what I need and cook the same/similar thing in a separate pan/microwave.

Enjoy your trip

[Mskedi]

That mass e-mail is a good idea! I think I've already told every single person I know, so it's too late for me, but I wish I had thought of it.

Of course, on my dad's side of the family practically everyone HAS Celiac Disease, so they wouldn't have needed it.

[hypersof]

hi there,

great advice again

and actually, I just had the same idea than the "mass email": since my arrival in the US, I got a blog where I post some news for my family & friends...so a few days ago I posted a message there (explaining the basics of celiac disease, and cc)

I am glad to hear your positive experience about this kind of thing! we'll see how that goes for me.

as far as the in-laws trip, well I am preparing myself now (I'm flying on Thursday)

I'll have with me: some basic food for the plane (gluten-free snack bars & fruits) + some gluten-free pasta, crackers, tuna pouches and my own tupperware for the few meals I'll have in France

...then as soon as I get there, I'll check if I need to buy any basic cookware, and will go for a grocery trip with my husband, for the fresh veggies & fruits.

so far, It think I am not doing so bad -at least, I feel prepared

again, I want to say it has been a great help to discuss it with all of you (great ideas, and it helps so much with the stress to be able to chat about it)

so thanks for the input!

any additional suggestions welcome...

Sophie

[kayo]

I love the mass email idea. Any pointers? How did you start it off and what kind of response did you get?

I think this might be good for a few reasons. So many people don't know what gluten is, and certainly don't know anything about celiac. Sometimes they think I can have whole wheat but not white and some people in the family confuse glucose for gluten.

Also in the email can be information about cross contamination and why it's so important for us to bring our own food.

Maybe the invites for dinner will return if I send out such an email. No one invites me over anymore