8 replies to this topic

[Calmom]

A friend recently invited me over and went out of their way to make me something gluten free and I had to turn it down and hurt their feeling, because it had rye. In their defense they only remembered the word wheat. Although cross contamination was a huge fear in my mind had it not contained rye. I felt so awful. I had no idea they were planning on making me something to eat, and they were so excited about making me something gluten free. Sometimes it is just so awkward trying to explain to people that you can't really trust eating away from home with out sounding ungrateful or hurting someones feelings.
What do you guys do in these situations?

[Mom23boys]

I've been milk free much longer than wheat free. I cannot tell you how many people do not make the connection that cheese and butter are a milk product. I just have to go on about how appreciative I am, thank them but let them know that cheese and butter are milk products. I have also changed my language to "all milk products" instead of "milk". That helps.

Let them know that you appreciate the work they went to. Next time instead of just saying "wheat", say "all wheat/gluten related products". They still may not know what you are talking about but it takes the focus off of "just wheat". HTH.

[codetalker]

I have adopted a “just say no” attitude and make no exceptions. I never eat anything prepared by friends and family. There are several reasons for this.

It took me about a year to get the diet right and I had an obvious incentive to do so. Friends and family do not have the same incentive because they do not suffer the consequences of being glutened. They are just trying to “be nice”. My experience is that friends and family are prone to make all the same mistakes I made in the beginning days and months of learning the diet. I finally got tired of getting sick just because someone wanted to “do something nice” for me.

If you eat the food and get sick, what do you do then? Do you tell them? Do you take them into the bathroom to look at the D in the bowl in order to impress on them that they made you sick?

Of course not. You will be polite and keep it to yourself. That silence will tell them that they did everything right and prepared the food correctly. In other words, they and others will be encouraged to do it again (i.e. fix something for you). That means more glutenings in the future.

Step back and look at this objectively. If you were a diabetic and someone put you in a situation where you might go into a diabetic coma, would you feel sorry about hurting their feelings? If you were an epileptic and someone did something that might trigger a seizure, would you feel bad about hurting their feelings?

The intial symptoms of glutening are gas, bloating and D. People do not consider these “serious”. If glutening caused comas and/or seizures, which are considered serious, family and friends would not even consider taking a chance and glutening you. Further, they would respect your decisions about how to handle your diet.

If we celiacs do not take celiac disease as well as our health and well-being seriously and people see us voluntarily putting ourselves in risky situations, they will never take celiac disease seriously. The result will be repeated glutenings at the hands of family and friends.

My experience is that non-celiacs never get it right and there will always be the next “friend” that wants to cook for you and ends up glutening you. The only solution I have found has been, as mentioned above, to “just say no”.

[Takala]

I tell them the truth that I am allergic to one of the other ingredients.

Well, maybe, maybe not, but I'm carrying an inhaler and antihistamines, and don't want to use it. Most people are scared of that inhaler ! A couple of times I've pulled it out to use it as a preventive measure when I was going to exert myself hard when we've had forest fire smoke (living in CA, this can be a seasonal problem that goes on for days/weeks and even normal people have trouble breathing, let alone those of us w/ asthma ) and I notice that people are always suddenly very aware of what I'm doing.

Since it is true that I can be more sensitive when in a state of being glutened, this technically is not a fib, it's just sort of a face- saver. It is easy, also, with gluten free stuff because chances are, they really would have used something that would wreck me. See, these reactions to things like flax can be really, really handy sometimes.

The other thing I do is I take food with me whenever I go somewhere, so other people are used to that. I also will bring things I have made that can be for other people.

[Cara in Boston]

Even though I've told our extended family over and over that my son and I cannot eat anything prepared in a kitchen that is not 100% gluten free, they still kept trying. I know they were trying hard to make us feel included, but it was really just a waste of time and money.

When my son's 6 month blood test came back higher than the doctor wanted, she told us to "step it up" and come back in three months for more tests. While this wasn't great news, it DID help a lot with our problem. Now I could say that the DOCTOR has given us strict instructions about how careful we must be for Joe and they finally listened. We can only eat things at the homes of other people if they are gluten free and still in the package - even then, I take out our servings first and keep them separate. We always bring our own food and a gluten-free dish to share. "Blaming" it on "doctor's orders" and blood test results seemed to be the trick - I guess before they just thought I was being an overprotective mother.

At his 1 year check-up, his levels are finally down (but I didn't share that information with the rest of the family)

Cara

[Adalaide]

After just a few months I'm already aware that I have to steer clear of anything made in a shared facility. I get to be super sensitive, I'm so lucky. I'm surprised at this point that I don't get sick when the word gluten passes my lips. Last month, for the first time, I had friends over and made dinner. I'm banking on the fact that the couple has a baby due at the end of this month to keep them from deciding she has the time or energy to invite us over. When the inevitable happens though I'll simply have some salad, pray, and enjoy their company. They do know I have celiac but don't understand it well, and with 2.8 kids in the house I don't really expect them to take the time to learn. If push comes to shove I'm prepared with a statement about how celiacs who don't stay 100% gluten free double our chances of certain types of cancer. Nope, not above telling them I'll die of cancer from eating their food, because at least that is serious enough for them to take me seriously, and should end the discussion about it permanently.

[ncallier]

After just a few months I'm already aware that I have to steer clear of anything made in a shared facility. I get to be super sensitive, I'm so lucky. I'm surprised at this point that I don't get sick when the word gluten passes my lips. Last month, for the first time, I had friends over and made dinner. I'm banking on the fact that the couple has a baby due at the end of this month to keep them from deciding she has the time or energy to invite us over. When the inevitable happens though I'll simply have some salad, pray, and enjoy their company. They do know I have celiac but don't understand it well, and with 2.8 kids in the house I don't really expect them to take the time to learn. If push comes to shove I'm prepared with a statement about how celiacs who don't stay 100% gluten free double our chances of certain types of cancer. Nope, not above telling them I'll die of cancer from eating their food, because at least that is serious enough for them to take me seriously, and should end the discussion about it permanently.

How do you "steer clear of anything mad in a shared facility"? My husband and 2 sons do not have celiac disease and have no desire to share my gluten free lifestyle. I keep my food separate from theirs and try to make most of our shared food things that all of us can enjoy. I can sometimes trick them with gluten free pasta, but they refuse to give up their breads and other gluten-filled foods. I am already struggling with my symptoms and all the stress of managing them; I do not think I could also manage the stress of fighting with them over their food.

[Adalaide]

I wish I could get my husband gluten free, but the odds of that happening are about the same as the odds of a zombie apocalypse. I won't buy anything from a shared facility and at home I mildly worse than insane about the kitchen and my stuff. No one ever even touches any of my dishes. When I cook or even wash I'll clean everything with a new clean rag, twice, then get a third clean rag to wash my dishes with. I share nothing, other than stove burners and counter space and I don't think I could bring myself to eat anything that touched the counter even if I knew it was clean. I keep my stuff separate in the pantry and the refrigerator. I've tried several times to eat something with a warning on the label that it's from a facility that handles wheat and every time I get sick so I'm done messing around. Barring the one friend at church with a family that suffers from severe food allergies I trust no one to prepare my food for me but me.

[dani nero]

A friend recently invited me over and went out of their way to make me something gluten free and I had to turn it down and hurt their feeling, because it had rye. In their defense they only remembered the word wheat. Although cross contamination was a huge fear in my mind had it not contained rye. I felt so awful. I had no idea they were planning on making me something to eat, and they were so excited about making me something gluten free. Sometimes it is just so awkward trying to explain to people that you can't really trust eating away from home with out sounding ungrateful or hurting someones feelings.
What do you guys do in these situations?

I would call them in advance and explain the situation.
If their feelings really did get hurt, I would tell them to grow up.