Support

[sdore]

I am having a hard time with the people around me that I have contact with daily.

I think that I am crazy. I am so picky about my food and cross-continamation. I refuse to eat anything unless it is gluten free and possibly contaminated.

Last night my boyfriend made a comment "she won't even eat something if a fork touches it and the fork was in something with gluten".

When we grilled out last I made sure that they used different spatulas on my food than their's because of the spices they used on their food. Thet made jokes that they used the same spatula and I didn't know it and I didn't get sick. They more or less think that I am overdoing the gluten-free thing.

It's hard when they people around me think I am crazy.

Any advice?

[ianm]

Keep doing what you are doing. It is YOUR body and you must protect it by any means necessary! If others around you don't like it then TOO DAMN BAD! I have pissed off more than a few people because they don't like what I will and won't eat. When that happens they just cannot be a part of my life anymore. I was so sick and wasted so much of my life that anything less than 100% gluten free is just not acceptable.

[tarnalberry]

You're doing the right thing. And you reminded me of a funny incident:

My husband and I work in the same company, on the same project, for the same group, in cubes kitty-corner to each other's. One day, we packed a fork for him in my lunchbox, because he already had a rice bowl (not gluten-free) at work in the freezer. I got back to my desk from working with some other people around 1, sat down to check my email, and saw a yellow sticky note on the corner of my desk, with small writing in the bottom left corner saying "dirty fork". I was perplexed, and considered whether or not my husband was leaving me a naughty little note! :-) I looked around, and discovered that I had bumped his lunch fork behind my tea mug on my desk. He had put it there so it could go back in my lunchbox to go home, but he didn't want me to eat with it since he had used it to eat his non-gluten-free rice bowl.

All in all, yes, you're being paranoid. But that is appropriate in this situation. A small amount CAN make you sick, so you must be hypervigilant. Over time, your family and friends will come to accept, even if they never understand, if you continue to stick up for yourself and have confidence in the choices you are making.

[celiac3270]

I'm so sorry to hear that. I bet I'm 100 times worse when it comes to paranoia about the diet and I don't usually have to deal with much....criticizing or joking about it. My family realizes that this is....I guess you could say, natural after spending 8 years (or 57% of my current life) in pain.

You're not crazy. They just don't get it. Nobody gets it unless they've been through it--unless they're the ones with constant symptoms, unless they're the ones who know how painstakingly careful you have to be with this diet, unless they're the ones at risk for all these other terrible complications if they don't strictly adhere to the diet. Nobody understands it except for you and all the other diagnosed (or who think they have celiac disease), symptomatic celiacs.

And the thing about separate spatulas is 1000% valid. I would do the same thing and any celiac should make such a request. And about gluten and forks--that's another example of a practice that should be followed by all celiacs, even those who aren't as paranoid. I consider both those ideas to be nearly as elementary as don't put gluten-free bread in the contaminated toaster.

You're right, they don't understand. Stick with it.

[sdore]

Thanks you guys!!!!

This is something that I am going to have to deal with, and I am going to have to not let things bother me so much.

Thanks for all of the advice!

[Guest nini]

I've pissed off more than one of my relatives who thought that they were doing a good job of preparing something the I or my daughter could eat, only to find out that they used the same spoon to stir the gluten-free gravy as they did to stir the non gluten-free gravy. I poured the gluten-free gravy right into the non gluten-free gravy and said well I guess WE didn't need to have gravy on our turkey anyway since this is now contaminated.

Oh oh, and there's the one where my husband got mad at me because I threw out an entire jar of Hellman's mayo after he double dipped while spreading some on his gluten filled bread. I know, I could have just marked the jar "contaminated" but I was rather irritated at his insensitivity. He's gotten better. He's since learned the art of the "drop"!

[KaitiUSA]

I know how it goes to feel like the odd person out and it feels like everyone picks on you with some comments they make. I personally have got to the point I do not care anymore...if they have a problem then fine thats not my problem. This is my life if they don't like it the door out is open.

[pmrowley]

Things like this always piss me off. As I have complained about before, people with peanut allergies got all of the airlines to stop serving peanuts on the planes, because some people are so sensitive that they could go into anaphylaxis by just breathing in aerosolized peanut oil. But WE'RE the ones who are strange, hyper-sensitive, etc., when we ask for special handling of our food.

The biggest problem is that with all of this, our outward reactions aren't necessarily noticeable, and they tend to be delayed, since this isn't an allergic reaction. The jokes about "using the same spatula but you didn't get sick" are exactly the problem. THEY don't see us bazooka-barfing right after ingestion, so they assume that we're fine. However, when we get home, and are wracked with cramps, bloating, etc., they don't see it.

Sometimes, we have to be tough, and get into someone's face about it. For example, how many times have you ordered a Caesar salad from a restaurant, asked for them to toss it in a CLEAN BOWL, because you can't eat the crutons, and it comes with OBVIOUS crumbs in the dressing? In these cases, I go to the manager, and explain what has happened. More often than not, they're chagrined about the whole thing, particularly if it's a restaurant that professes to have a gluten-free menu (Fleming's Steakhouse in this case.) I've gotten very expensive meals 100% comped in the past for just that reason. As a matter of fact, I really let a coworker have it a few weeks ago, when I mentioned to him that he always picked Italian restaurants for lunch, and that it really limited my food choices. He said something snide about my diet, so I unloaded on him for 15 minutes with my abridged 25-year history of dealing with it. After my tirade, he said, "Oh, I didn't realize this was a life-or-death thing. I'm really sorry." Since then, he's been a supporter.

Sdore, you really have to insist that the ones who are close to you heed your wishes. Jokes about sensitivity, etc., are deal-breakers in my book. Make them understand that it's hard enough to stick with the diet on your own, but jokes about it are counter-productive. THEY don't know what the internal reactions you are dealing with are. They don't see the massive immune response attacking your insides. They don't understand that we react to MOLECULES of gluten protein, not teaspoons. Do any of them have allergies? How would they feel if you made fun of them for being allergic to your cat? (hypothetically ) They can't control their allergies, other than avoiding the allergen, any more than you can control your condition, other than your diet. There is NO COMPROMISE with this. Make them understand that this diet is 100% exclusion or it's worthless, and your health suffers for it in subtle, but insidious ways.

You REALLY need to lay down the law with your boyfriend. He needs to support you, stick up for you, and help provide a united front. Anything short of that is unacceptable. Educate him, so he realizes just how important this is to your long-term health. He doesn't have to share your diet (although when cooking for just the two of you, it sure helps. Making a single pot of gluten-free pasta is much easier than dealing with multiple pots, with dedicated utensils, and it's healthier anyway!) My wife tends to get much more angry at food ignorance than I do, once I've made my point and they're still not getting it, and it's kind of nice.

Above all, DON'T be ashamed of your diet! Particularly these days, when EVERYONE has a special diet of some kind! That was my problem for a long time. I was apologetic for the trouble I caused, and I didn't protest if I had to abridge my meal because all I could safely eat was a salad. Then, I finally got angry and started pushing back when someone pushed me around. At a barbequeue, I ask that my food be cooked first, right after the grill is cleaned, and the utensils aren't contaminated. The first couple of times, they looked at me a little strangely, but I explain my condition, and they cheerfully comply. I get a little militant at restaurants at times, talk to the manager about my diet, and make the wait staff EARN the tip (which I usually do at 20%, for the extra trouble.) After a while, it felt as though a great weight had been taken off of my shoulders. Confidence counts for a lot. Apologetic embarassment usually leads to minimal effort in complying with your wishes. A confident request tends to have more weight behind it.

Cheers,

-Pat

[tarnalberry]

Pat, that one sentence you used: "Don't be ashamed of your diet" is VITAL. I've gotten the impression from some of the people on the board (and I'm not trying to pick on people - this is a personality trait, but with a condition like this, it could be a dangerous one) are intimately embarassed or ashamed of having to stand up for themselves about their diet. I don't understand it, but I do accept it. At the same time, not growing past that feeling will make the diet that much harder. Each and every one of us, celiac or not, has the right to make decisions about their own body, their own health, and their own food, and have those decisions respected for no other reason than because they are a human being. It's a shame that other's try to judge or shame people, but that needs to be their problem, and not ours.