Canceling Social Plans...

[KateGrace]

I have been gluten-free (also dairy/egg/anything hard to digest-free) for a month and a half now. I have been patient with myself and kept an upbeat attitude. I generally look at the bright side: I am eating a LOT healthier; I have lost ten pounds and am at my set-point weight; my body is happy and healing for the first time in 10-15 years; and (relief) at this point in the diet, my cravings for wheat and dairy have disappeared--which is no small battle, considering how STRONG my cravings used to be (see: those extra 10 lbs).

But there are also those times when I feel utterly, utterly helpless. Like getting glutened accidentally. And looking and feeling just awful for a week...besides constipation, my most obvious symptom is BLOATING, especially my face. I feel so self-conscious about it that I don't even want to leave my house, even to go to the store. I eat so carefully, but then I ingest a microscopic crumb of bread or breathe in a big ol' dusty whiff of dog food...and goodbye, social life. Hello, pain.

The worst part is trying to explain it to people; they just have NO clue and, because of this, I feel like they don't really believe me. Mainly it's my family that's the problem...they think it's just another fad diet (!) that I'm trying. After years of dealing with digestive problems, I've tried different diets, because I somehow knew that food was the issue. It was only when I went gluten-free that this was confirmed. But my family is pretty traditional and does not approve of my going against the grain (literally). Trying to educate them has been hopeless.

And my friends just wonder why I disappear for stretches of time and keep canceling plans. I feel so silly saying, "Well, I had a crumb of bread and now I'm bed-ridden," so I usually make up excuses, like--um, I have to work! (cough cough) The flu! A last-minute emergency! Sorry, but can't make it tonight!!

I hate having to lie, but explaining myself...it's too exhausting. And after the second or third time, it gets old.

And anyway--please allow me to whine--I just want to be normal! I don't want to be the girl in the corner talking to strangers about my intestinal villi and handing out Celiac literature. I don't want to be unable to eat anything that hasn't been prepared by me. Or, if I do go to a restaurant, to have to find the least offending thing on the menu and then give the poor waiter a "Harry Met Sally"-type briefing on how my well-being (for the next week) now rests in his or her hands.

I so admire everyone on this board who have had to deal with this for much longer than me!

In the end, my health trumps social niceties any day of the week. : ) Every day that I wake up healthy I go, "Wooo!" I guess I'll just have to learn to be imposing/"annoying"/a chef's biggest nightmare if it means living a happier life.

And, besides the accidental slip ups, living gluten-free hasn't been bad at all. Whenever I want to complain about my limited dietary choices, I just think--Wake up! There are a billion people starving in the world! How lucky am I to be eating delicious fruits and vegetables, gorgeous salads drenched in olive oil, fresh juices, and juicy meats on a daily basis?

(although too much meat gives me a stomach ache...but, hey, that's all right, because I'm healing! And whatever helps that process along, or hinders it, at least I can count on my body to tell me)

Thanks for listening!

[luvs2eat]

I completely understand how you feel. I've had to tell people who look at me w/ that furrowed brow "OH YOU POOR THING" look and say, "Ya know what?? Compared to the awful things that happen to people... this is NOTHING. I just had to learn to cook differently." I bring food w/ me and tell people (w/ a smile), "If I don't prepare it, I just can't eat it."

Your positive attitide is really great! And people will respond to that.

With regard to your family... they'll get it too... someday. Just keep on doing what you're doing!!

[Ahorsesoul]

Yes, a positive attitude and honesty will work best. Why make up an excuse? People can tell you are not telling the truth. If you lie, why should they believe you about not eating gluten? I've canceled social plans but I tell them why so they will know gluten makes me extremely ill.

I can not say my family or friends really understand Celiac Disease but they do know I am not eating at their house unless it's what I have brought from my home. Period, end of story. My health is much more important.

I do go out to restaurants for the social aspect but not the food. I call ahead to the restaurant to let them know my diet limitations and ask what I should order. I politely tell the hostess seating us I've called ahead and spoke to (name the person). I ask to speak to the manager also. I have printed off some free gluten free dining cards I hand to them. I've always been treated very well. I would not just drop into a restaurant and expect them to figure out what to serve me at the last minute.

This is a lifetime role we have been forced to follow. It's good to learn how to deal with it early in a way that works for you.

Keep us informed on how you are doing.

[tictax707]

So, the good news is that with your positive attitude, I can promise you it will get better. I also completely empathize with your desire to be "normal" again. It's best to feel that pain now, so that it doesn't bite you later. I refused to allow those feelings in when I was first diagnosed and I feel pretty whacked out now, almost 10 years later. Someone said it's really a grieving process - do allow yourself to greive for the loss of your "normalcy." But, like you said, you are MUCH better off now. I don't mean to sound overly preachy, but don't let this thing rule your life. You NEED your friends and family for support right now, and it's not a good time to alienate yourself from those who love you. If you are bed ridden, just tell them you're sick. It's actually probably a good way to get them to understand just how sensitive you are to this stuff, and how serious it is for you. You don't have to make it a big long deal - you can say that you got sick from something and are still working it out. And I gaurantee that they love you, bloated or not!!! Maybe if they saw you in the different conditions they might begin to understand. I am so sorry that it's been so hard to get the people around you to accept the changes you have to go through. Stick to your guns and take care of your health, but really try not to let it completely run your life. Get out there, and be social and hang with the people you want to hang with. And remember, we are here for you and always listening for when you need to vent!!

[New-To-This]

Keep on being positve! And don't shut yourself out from the world.

We went throught the same thing. Friends would ask "are you still on that weird diet?" or "Are you on that diet yet?" It was so frustrating to my husband who has celiac (I eat the same way so he doesn't have to worry about eating something he shouldn't when I'm not home). Than in December he was hospitalized, we had been gluten free for about 6 to 8 weeks at the time. We learned a lot during that time, like yes you need to replace your kitchen stuff such as toasters, mixing utinsels, frying pans, etc, etc. Family came to the hospital to see him and realized this is very very serious and not just some fad diet or anything. Now his entire family has gone gluten free, a few had been gluten free prior to his hospitalization but the rest joined the gluten free life style after seeing just how serious this can be.

I personally think I have been a silent sufferer as I feel much better on this diet as well. I just wish I could lose some weight on this diet, lol! I can feel a big difference in how I feel though! I no longer feel bloated and gasy all the time, and if I eat something that has gluten in it, I can tell, usually minor discomfort, but discomfort just the same.

I know it can be frustrating to be posstive or be around others, but this is when you need them the most, not just for support but for your well being as well.

My husband and I make it a point to eat before going to visit and bring foods we can eat, yes I know, its a royal pain in the butt, but why miss out on special occassions and holidays?

My sister now makes an effort to buy a few things that are gluten free to have around when we come to visit, and several family members try to bring fruits and veggies instead of cakes and cookies. We in turn bring the desserts and they are usually quiet surprised and say they wouldn't have known it was gluten free by the taste.

I have had several trial and errors in my kitchen and I tell my husband to be honest about the foods I serve. I really do want to know if its a yes, please serve that again or No I can live without eating that version again. I have had several under both catagories now. But I keep trying. I have finally found a cookie recipe he says is almost the same as "Normal" cookies, he can hardly tell the difference.

The best of luck to you!

[Reba32]

why do you lie to your friends? What kind of life is that? If they are your friends, then they need to know, and they need to understand your disease. And they can't do that if you hide it from them.

I know I don't particularly like it when a so-called friend lies to me about anything. Friends should be able to trust each other.

[tarnalberry]

I generally say "I'm not feeling well, so I won't be able to make it tonight." Then again, I have fibro and chronic migraines as well, and if I'm feeling exhausted, I'm exhausted. The details aren't important, and my friends know that I don't really care about their sympathy, I just want to stay home and rest. If they ask, I certainly won't lie - but I don't always go into details even with those I know will "understand".

[KateGrace]

Thank you all! Your advice is really appreciated.

As far as making up excuses, I guess it's because I hardly believe it myself sometimes...that I could sick off of one little crumb! I think some of my friends/acquaintances would just go, "?! seriously?!" I've told my two closest friends and they're incredibly understanding, and that's been encouraging. And reading your posts has been encouraging!

I don't know why I've been so scared. I guess I'm still so overwhelmed with all this...I'm still only learning about the disease, and I feel very inadequate explaining it to everyone I know. But every day gets easier.

As far as isolating myself, I've made a vow to stop doing that. I've totally recovered from my last glutening and feel better than I have in..hmm...years? I'm attending a wedding today and will see people that I haven't seen in years...and I'm so happy with the way I look! The bride also knows about my celiac--it came up casually in conversation--and she insisted on making arrangements. I still don't know if I "trust" the food preparation, but the fact that she offered to do that was so touching.

I guess I'm stuck with this disease, so it's time to come to terms and let people know this about me. No more hiding and no more fumbling for excuses.

Thanks everyone!

[Welda Johnson]

Hi,hope you're doing well today. I can relate to so many of the things you said. After quite a few years of being on a diet similar to yours (no grains, milk, dairy, egg whites, yeast, msg, casein, whey, etc. etc. etc.) I am finally accustomed to eating this way. But, I got glutened last week, on a bottle of shrimp sauce I thought was safe. Not so.

My grandson and I spent last week laughing about a lady on tv's blooper when she said, "Did you get up on the wrong side of the bread?" Thought you might appreciate a little humor. As I watched Boston Legal today I noticed that all the characters on that show who are in my age range (I'm 65) carry more weight than I do. I am less than five feet tall, so it is easy to gain a few pounds here and there, something I did this week and was chastising myself for. Seeing those Hollywood stars heavier than I am gave me a new perspective, and reminded me that I am often very hard on myself.

So here's a pat on the back for you, for me, and for each and every person who spent today, Easter Sunday, trying to stick to their diets and live a happy life. How many non-Celiacs could find the stamina to stick to this diet? Even those who think they may be genetically at-risk for Celiac often don't want to even discuss the diet, or, Heaven forbid, think of imposing all these restrictions upon themselves. I think we're pretty good for sticking to this for one day, much less a lifetime. Hurray for all us Celiacs.

[jackay]

So here's a pat on the back for you, for me, and for each and every person who spent today, Easter Sunday, trying to stick to their diets and live a happy life. How many non-Celiacs could find the stamina to stick to this diet? Even those who think they may be genetically at-risk for Celiac often don't want to even discuss the diet, or, Heaven forbid, think of imposing all these restrictions upon themselves. I think we're pretty good for sticking to this for one day, much less a lifetime. Hurray for all us Celiacs.

I must say I'm really proud of myself for eating turnips, broccoli, cauliflower, chicken breast, olive oil, avacado, sea salt and almonds today while all the relatives, including hubby, literally pigged out on unhealthy foods. I know I felt good all day. What really makes me happy is that this is the first holiday I have been able to enjoy in 4 1/2 years. Lots of the foods were gluten free but my tummy just isn't ready to handle them yet.

[kayo]

Over the years I've had to cancel many plans due to my RA or due to a migraine or GI troubles. I've found that the friends who truly understand and get it will be the ones who are the most supportive. They might be disappointed but they never give me grief. The friends who did give me grief are no longer my friends. I had one friend who would challenge me and say things like, I know so&so and they have arthritis and they never have problems with xyz. I'd counter in a number of ways, defend myself and still feel badly later. Then one day it hit me, this person was not a good friend. Why should I have to defend myself? My uncooperative health is my lot in life and I have no control over it. So now I own it. This is my reality. I only have one body and it's a lemon What can I say? I didn't choose it, it chose me. It's still my priority and I'm going to treat it as well as I can and if that means canceling plans to rest then so be it.

I've learned that there are some people who just completely lack empathy and sympathy. I only wish they wore a sign so I could avoid them from the get go!

[KateGrace]

Thanks Welda and jackay, I agree we ought to be proud! This was my first gluten-free holiday and I made it through. Yay, me...and us!

People were eating gluten and dairy all around me. But like you, jackay, I was feeling good because I was healthy. I had to be on the ball as far as food preparation, bothering the cook, getting the first serving of veggies (no cc), etc. I was diligent.

Good news: I've gotten over the fear of being "annoying" or "different". I just realized--I'm worth it!

So here's a pat on the back for you, for me, and for each and every person who spent today, Easter Sunday, trying to stick to their diets and live a happy life. How many non-Celiacs could find the stamina to stick to this diet? Even those who think they may be genetically at-risk for Celiac often don't want to even discuss the diet, or, Heaven forbid, think of imposing all these restrictions upon themselves. I think we're pretty good for sticking to this for one day, much less a lifetime. Hurray for all us Celiacs.

This was so inspiring!

And kayo, I hear you. There are people currently in my life who are not very supportive, concerned, or helpful. But then there are those who have been so empathetic, interested, and going out of their way to be thoughtful (most people, in fact).

I agree, either way my health comes first!