People With Poor Timing

[GlutenFreeManna]

This is mostly a vent, but I don't mind if anyone has advice. I got glutened a couple days ago by some masa harina mix that had wheat cc. I threw most of it up when I ate it so I didn't get any digestive issues, but I am experiencing major neuro symptoms. Yesterday I woke up with muscle pain and very stiff joints. Felt really weak and exhausted and could not do much of anything. The worst part was my DH had the day off work and we had planned to go to the beach for the day. He saw how bad I felt and understood but I felt bad for disappointing him. Later in the day I was feeling a little better after resting most of the day. I told him we could go to the beach for a few hours in the late afternoon/evening but I would probably just rest on the shore (beach is only 30 minute drive). So we get in the car to go and on the way a new aquaintance calls to ask if we want to have dinner. Fortunately DH asked me first and I said no. I barely felt well enough to go to the beach, let alone to go from the beach smelling like sunscreen and full of sand with my hair all messed up to the house of someone I barely know and not be able to plan in advance to bring anything or starve because I may not be able to eat anything. We have only lived in this area about a year and don't know very many people. We just met these people and they have been trying to get us to come over for dinner for a few months now. It seems like every time they call it's last minute (can we come THAT NIGHT) and I have been glutened or we have other plans. So now I'm starting to really dislike these people and I'm trying to figure out if it's the gluten in me making me think like this. I have no reason to dislike them other than that they are the type of people that don't seem to make plans very far in advance and they always seem to call when I feel like crap. The bad part is I used to be more like that--always up for last minute plans and being spontaneous and now I can't be. I have to plan everything around what I will eat and I carry snacks with me most of the time, but since I don't eat a lot of processed food it's hard. A jar a peanut butter is about the only thing I trust so I carry that and try to throw in a banana or some carrot sticks or some celery, but carrots and celery take prep and I can't just leave them or fruit in my warm purse for long periods of time. I'm just frustrated more than anything. I know I need to just keep planning out my days and eventually I'll get to a point where I'm not getting glutened and maybe I'll have friends again. Fortunately these people keep calling, but I don't think they are going to for long if we keep turning them down. My DH has gone to their house a few times without me and explained I was sick, but he doesn't want to see them without me anymore. They know I have "food allergies" but that's as far as the conversation has gone. I've tried to explain I need more advance notice to bring something and they say, don't worry about bringing anything. I think I'm done with this little song and dance. Today my hands are shaking really bad, my head is feeling like it's in a vice and all I want to do is sleep and these people called again to see if we wanted to go out for lunch somewhere. Arrgh! No, I am still sick! Why don't they understand the word sick?!?

[skigirlchar]

when i was little (before i started down this road myself) my family was very good friends w/ an orthodox jewish family. they follow strict dietary laws that include using specific dishes for meat and dairy - and never the 2 shall mix. 99% of the time if we ate together they were the host. the 1% of the time they came to us, we bought pre-packed foods which were labeled kosher and served them on paper plates w/ plastic ware. why? because they were our friends and we cared to keep them in our lives.

for whatever reason these people want to befriend you, and have befriended your husband.

it's time (once your are post gluten) to fess up that this is more than being sick, and more than allergies.

find some clearly written documentation about celiac's, print it out, and ask them to come to YOUR house. have some simple but gluten-free foods available to share with them. show them what the labels look like - and what the "hidden" "no no's" are.

explain that you have - unfortunately - been "glutened" by mislabels and seemingly innocent foods and explain the ugly truth of what happens to you, vs your happy & lovely self when you eat clean.

the pain of possibly alienating them with the overwhelming truth is better than definitely alienating them w/ being sick w/ worry and fear of being glutened by them all the time or losing them because you are always sick on their schedule.

why did i share my above story? i was 4 or 5 when we met that family. 22 years ago we moved away from them, but as a family we have maintained an almost 30 year friendship with them.

[sandsurfgirl]

Take charge and invite them over to your house first. Make a plan ahead of time. And then you can explain.

Hope you feel better soon. Hydrate!!! Drink plenty of water to flush that out of you.

[RoseTapper]

You're received excellent advice, and I second all of it.

I just wanted to jump into the conversation to say that what you're experiencing are truly neurological disturbances. At the Gluten Intolerance Conference's annual conference in Minneapolis last month, several experts presented information that was completely new to me--they said that celiac is now being considered as a neurological disease and that gluten acts as a neurotoxin on the brain. It causes reduced bloodflow to the frontal lobes and plaques to grow throughout the brain.

As for what to carry around with you, personally I choose to carry apples and either peanuts or peanut butter. Because I have a small knife on my keychain, I'm able to cut up the apple and spread peanut butter on the slices just about anywhere I happen to be. I, too, don't care much for processed foods, so those energy bars really turn me off.

I hope you start feeling better soon!

[GlutenFreeManna]

Thanks everyone for your responses. I know this is more than allergies, but for me I really do have serious allergies as well as the gluten intolerance (see my signature). It's just easier to start the conversation with my food allergies and ease into explaining celiac disease as an auto-immune disease. Some people really don't care and just want to know what I can and cannot eat. So I don't give details right away. I will try to invite them over sometime when I'm feeling better. Right now I just need to rest. I just realized from all of this that I don't want to see anyone when I'm glutened, I become highly anti-people. When I'm off gluten I love people and could talk for hours and hours. It's like that thread on personality changes. Fortunately my symptoms tend to go away after three or four days, but it's really annoying feeling crazy until then.

[Skylark]

OMG isn't it? I get anxiety attacks and want to hide my head under a pillow.

I second the idea of inviting them over and doing the cooking. These sound like nice, if slightly flaky, people.