As News Gets Out...i Have Celiac Disease

[Lisa]

gone

[mouse]

We also find the same thing. They are afraid to cook for me. I did go to a Halloween party for a couple hours on Saturday, but I brought my own beer and ate before I went. It was just safer for me. I had a good time and I was trying to show people that I can still go places. We do meet friends at restaurants for dinner and that has worked out well. I have thought of having people over, but I have not felt good enough to entertain yet. But, I sure do think of things to prepare for when I am ready-he he. Have some people over, but cook real easy things that are gluten-free. That way they can see that it is not that hard to have you over. I think that with this disease we sometimes have to be proactive. Our lives evolve around food when we get together and friends are so afraid of making us sick. I went to a tea in Sept. and took my own sandwich. I made sure the crust was cut off just like everyone elses. I had them serve it on MY plate so that the crumbs on their hands would not get on my plate by placing my sandwich on there. It was already on the plate and I removed the wrap. When I have been to a Super Bowl party, I always bring a dish to pass that is safe for me and I dish up mine right away before any cross contamination. We have to speak up if we don't want to live within our 4 walls.

Good luck Lisa and yes, it is so hard to have to deal with this at our age. HUGS

[happygirl]

Lisa,

Hugs.

So, do you have any hypotheses why? The fear of cooking for you? What do you think?

xoxo,

Laura

[Lisa]

Thanks Metta:

It has been a very frustrating day for me. I zapped my post, because it was TOO reflective of my mood.

There are so many ups and down of this crazy thing that we all have. But when, last night, a "friend" brings some homemade, sausage italian bread and says, "I know you can't have this, but just smell it and see how good it is" and slides it by my nose....really pisses me off. I am angry at them for the inconsideration, but I am also mad at me, frustrated and angry.

I'm frustrated that I have to be one to entertain. Most people are afraid to cook for me, but also, not willing to ask or to try.

Just another day in Celiacland.

[mouse]

You are right Lisa, in that most do not want to even try to cook for us. We seem to be a selfish society and when someone's illness or whatever becomes "work" then it is easier for people to ignore it. It does not speak well of the human race, but that is the way it is.

That is why we have narrowed our friends down to the ones who do care.

As far as your so called friend, I can be out spoken and in that case I probably would have. What she did is not nice at all and I would have nicely told her so. And if there were other people standing nearby, I would still have said something. I would have said it with a semi-smile, cold eyes, but a nice voice. She would have looked like the "b" she was. One question you could have asked was "if I was an alcoholic, would you have put a strong smelling drink under my nose to tantalize me with the smell". It is the same thing. Same with a diabetic. That woman is not your friend and I would avoid her. HUGS

[Mtndog]

Thanks Metta:

It has been a very frustrating day for me. I zapped my post, because it was TOO reflective of my mood.

There are so many ups and down of this crazy thing that we all have. But when, last night, a "friend" brings some homemade, sausage italian bread and says, "I know you can't have this, but just smell it and see how good it is" and slides it by my nose....really pisses me off. I am angry at them for the inconsideration, but I am also mad at me, frustrated and angry.

I'm frustrated that I have to be one to entertain. Most people are afraid to cook for me, but also, not willing to ask or to try.

Just another day in Celiacland.

That is really LAME. Why would you do that? Would someone do that with a glass of wine to an alcoholic? NO.

I'd be really mad.

Actually, I am mad for you

And I'm sorry. maybe it will get better. On the bright side, I had a student tell me tonight his grandfather, who is 80, was just diagnosed so his daughters have begun brewing him gluten-free beer. He offered to put me in contact with his aunt who's doing the brewin'. I am very open with my students about having celiac. Sending hugs your way, You know who

[miles2go]

gone

Geez, that's too bad... I've had kind of the reverse effect. Never much for dinner parties, but have always liked eating out in restaurants and since people have heard more about my situation, I get asked out to eat a lot more than before. Which makes it that much easier to get accidental glutenings, so on an off day, or after an accidental, I'll wonder if they're trying to poison me. Which of course, they're not...

I think this falls under that ol' umbrella we all know so well: ignorance and fear, best fought through education. Maybe inviting some people over to your house if you're feeling up for it and giving the dinner party a theme that doesn't sound gluten-free would help? Or maybe just asking those truly good friends/family that you do miss to go out to a restaurant if you're comfortable with that?

Where's Martha Stewart when you need her?

[Lisa]

Bev:

Glad to here you have a great hook up with the suds.

I will be more festive tomorrow, but tonight I want to biach.

I live in a town of 6,500 people, have three privately owned resaurants with no chain restaurants. No gluten free menu here, for sure. When we go out with friends, it's hamberger, dressed no bun; king crab leggs; or,small broiled seafood combo. I can not tell you how sick of that I am.

I frustrate Jim totally, because I still want to go out. Not for the food, but you see everyone in town on Wednesday night and it's fun. ( We are not podunk here, but rather cosmo for a small southern town).

I guess I just an experiencing a "mourning attack".......sauces and creams and french foods, drool.

OK, reality check: I cook better than any restaurants in town. And, for that matter, we have had more wonderful meals since gluten free.

I think that I am typing myself out of my "own" funk. Shut, the power of words.

I'm Chill'in and looking forward to tomorrows Beef Stew. It's good, easy and I will post.

[Susanna]

Thanks Metta:

It has been a very frustrating day for me. I zapped my post, because it was TOO reflective of my mood.

There are so many ups and down of this crazy thing that we all have. But when, last night, a "friend" brings some homemade, sausage italian bread and says, "I know you can't have this, but just smell it and see how good it is" and slides it by my nose....really pisses me off. I am angry at them for the inconsideration, but I am also mad at me, frustrated and angry.

I'm frustrated that I have to be one to entertain. Most people are afraid to cook for me, but also, not willing to ask or to try.

Just another day in Celiacland.

Wow--the friend was terribly inconsiderate! I'd be mad, too. I think that since there is so little understanding of celiac disease among the general public, it's our job to teach about it--starting with our family and friends. Maybe you could say to this friend: "If your kid was diabetic, I wouldn't torment him by dangling a candy bar he can't eat in his face, but that's pretty much what you did to me with your sausage bread stunt. You really hurt my feelings." I think that a real friend who cares about you would be immediately set straight (and feel VERY remorseful), and be far more sensitive in the future. And if this doesn't happen, well, it helps you figure out who your real friends are. I've been gluten-free for 8 mos. now, and I'm finding that those who really care about me are taking my diet seriously (but I'm doing my part in teaching them about it, too)--the relationship between us in these cases is strong enough to accommodate the change. Just like when I had kids, I remained friends with my childless friends in cases where the relationship was strong enough for that change, and the frienships that were just based on weak bonds? Those friendships died. It's OK to evolve your relationships--few people do your whole life journey with you. Anyway, I'm keeping in my inner circle those who 'get it' when I explain my diet, and lightening my load of those who don't. Good luck.

[Guest Kathy Ann]

I'm honestly surprised at how shallow people are as well. I live in rural America and nobody has ever even heard of celiac. "Celi-what?!" My closest business friends are telling me to just lighten up and maybe I won't be so sick all the time. They are recommending that I go ahead and eat the forbidden foods and I will feel better. Some have suggested I stop being so stubborn and just take the prescription drugs for masking the symptoms. Some are offering nutritional supplements, convinced that they will surely fix this. Others have even suggested that maybe celiac isn't a "real" disease anyway and is probably just a new fad. My family is completely ignoring the whole thing. I make everyone else's regular food and then eat alone most days. I'm disappointed. I really thought everyone would jump in and help me take on this challenge. But I guess it's all mine.

I think I'm still in mourning. Food was a BIG HUGE deal for me. And along with that, the accompanying fellowship of family and friends. With the discovery of multiple permanent allergies, all of a sudden I can't eat most things I've grown to love EVER AGAIN. That's a long time. And the reality of it is just now starting to hit me.

[daffadilly]

Yes, that was no friend, I think that you should have had a little melt down & started crying & going on how miserable your life is now that you cannot eat anything, & how awful it is when people do that to you... When a person does something mean like that they deserve to get the full brunt of their destructive behavior. Does she in her arrogant ignorance think you have a choice?

I know it is really bad the way people carry on. My own boss who has two DQ1 genes but prefers to take meds for his acid reflux (i know hello cancer in a few more years) is so ignorant that he actually thinks that if he just eats less gluten that it is okay & he thinks I am some natural health nut because I "choose" not to eat gluten & be healthy instead of eating the stuff & taking meds like everyone else does!!!! He has no clue how sick I get & that I am the most sensitive person on the planet to gluten. Of course he insists on "teasing" me about it. But you know I just keep thinking that he is going to be sorry one day. And with his two DQ1's I think he might not be completely rational, in fact I notice that he is very moody, and we all know why.

Your "friend" is probably gluten sensitive and it has caused her little brain to lose all its compassion and common courtesy. I just listened to this radio show that Dr. Hoggan (author of dangerous grains) was on & he was talking about how if you lumped celiac, gluten sensitivity & wheat allergy together it affected 30% of the population!!! (& we all know that gluten sensitivity, celiac, & wheat allergy is really the same thing, well there might be an odd wheat allergic only person out there - but I bet it is only a few, most people think they are wheat allergic, when in fact it is celiac)

So when dealing with some of these ignorant rude people, I try to remember that they probably are suffering from untreated celiac neurological symptoms.

[tarnalberry]

I'm relieved that my friends no longer try to cook for me. I don't trust them to be able contamination issues, even if they can get down the ingredient trickiness. It's just too hard. But then again, we generally don't have social gatherings revolve entirely around food - we find other things to do with our time.

[Lisa]

I'm honestly surprised at how shallow people are as well. I live in rural America and nobody has ever even heard of celiac. "Celi-what?!" My closest business friends are telling me to just lighten up and maybe I won't be so sick all the time. They are recommending that I go ahead and eat the forbidden foods and I will feel better. Some have suggested I stop being so stubborn and just take the prescription drugs for masking the symptoms. Some are offering nutritional supplements, convinced that they will surely fix this. Others have even suggested that maybe celiac isn't a "real" disease anyway and is probably just a new fad. My family is completely ignoring the whole thing. I make everyone else's regular food and then eat alone most days. I'm disappointed. I really thought everyone would jump in and help me take on this challenge. But I guess it's all mine.

I think I'm still in mourning. Food was a BIG HUGE deal for me. And along with that, the accompanying fellowship of family and friends. With the discovery of multiple permanent allergies, all of a sudden I can't eat most things I've grown to love EVER AGAIN. That's a long time. And the reality of it is just now starting to hit me.

Your last paragraph really grabbed me. (Talking to myself). I have spend the most of a year plus, with attempts to feel better. Now that I do........should I be angry or should I be grateful. I don't have the answer to my own question tonight, perhaps I may when this day is done.

[Guest Kathy Ann]

Feeling better. That is sure the key. I forgot what it feels like to feel good. I honestly think that I COULD trade dripping grilled cheese sandwiches, gooey pizza, creme brulee, fresh homemade bread with butter, bacon and eggs and simple mayonnaise tuna salad sandwiches if I JUST COULD FEEL GOOD AGAIN.

[Lisa]

Creme Brulee......ug, I will not stand for that. (unless you are diary intollerant, it should be gluten free)

.......back to reality.

[Guest Kathy Ann]

Yeah. I'm mourning the loss of dairy and eggs nearly as much, if not more than gluten. All the clever substitutes for those things are made out of soy. Guess what....no soy either. Most of the tastiest commercial gluten free mixes substitute corn for starch and flour. Guess what....no corn. Alternative nut flours are becoming popular. You guessed it....no almonds. Alternative bean flours work great......no legumes. I've been painted into an itty bitty corner. If I ever pull this off and don't starve to death first, I'll be a genius!

[lonewolf]

Yeah. I'm mourning the loss of dairy and eggs nearly as much, if not more than gluten. All the clever substitutes for those things are made out of soy. Guess what....no soy either. Most of the tastiest commercial gluten free mixes substitute corn for starch and flour. Guess what....no corn. Alternative nut flours are becoming popular. You guessed it....no almonds. Alternative bean flours work great......no legumes. I've been painted into an itty bitty corner. If I ever pull this off and don't starve to death first, I'll be a genius!

I really do understand how hard this can be at first. When I found out that I couldn't have wheat, dairy, eggs, soy, beans and multiple other foods I literally cried. Now, over 10 years later, I can make most things that I ate before. The things that I can't make (cheesecake, quiche, etc), I grieved and have let go. I had debilitating arthritis, along with fatigue and other symptoms. It took a whole year before I felt close to "normal", two years before I could work and three years before I got back to all my activities. I wouldn't trade my health for any food.

Please PM me if you'd like some recipes and tips for gluten, dairy, egg and soy-free. I don't use corn starch, but don't have to avoid it fanatically, don't use bean flour or nut flours and still make lots of good tasting baked goods.

By the way - I lost 40 pounds at first because I thought I'd starve to death too. I've gained it all back because I discovered so many things I COULD eat.

[Adelle]

*hugs!*! I understand how u feel. Fortunately my fam rox. It's always been mom, sis, and I (and as of nearly 4 yrs ago my neice katelynn). I'm married now but I live only like 20 min away and we call constantly! I was really scared when I told them of my special diet. Would I eat there again? What would I eat on trail rides? Luckily my fam has been great. Sis can't have dairy or nuts or a ton of preservatives (I'm the same way abt preservatives). It's the same thing to them. They r just extra careful. I love that. Unfortunately because I'm so physically sick a lot I have very few friends. I've even kinda "lost" a few numbers since they were being buttheads, thinning the numbers even more!

Ryan's mom is NOT cool about it. I'm SURE she's where he got it from (but u couldn't tell her that), she also has diabetes but won't follow ANY diet! WTF woman!

Our culture focuses on food so much, it's hard when u don't fit that mold!! Sometimes I just wanna SCREAM!!! My "friend" called, we were chatting, she has doughnuts, sandwiches, cake on and on. I don't think she knows/cares how hard this disease is!

Anyway hugs hugs! At least we can vent here! Yay safe space!

[darlindeb25]

Yeah. I'm mourning the loss of dairy and eggs nearly as much, if not more than gluten. All the clever substitutes for those things are made out of soy. Guess what....no soy either. Most of the tastiest commercial gluten free mixes substitute corn for starch and flour. Guess what....no corn. Alternative nut flours are becoming popular. You guessed it....no almonds. Alternative bean flours work great......no legumes. I've been painted into an itty bitty corner. If I ever pull this off and don't starve to death first, I'll be a genius!

I know how you feel Kathy Ann--I truly do. Don't ya just hate too, when people tell you to eat the forbidden foods, that it will go away. My brother told my sister, father, and me that he would make us all a big pot of barley soup and it would fix anything that ailed us--I wanted to smack him. Very inconsiderate!

As for the lady bringing the bread for you to smell Momma Goose, how horrible. The absolute worst for me is choc chip cookies and they bring them to work all the time.

[Canadian Karen]

Thanks Metta:

It has been a very frustrating day for me. I zapped my post, because it was TOO reflective of my mood.

There are so many ups and down of this crazy thing that we all have. But when, last night, a "friend" brings some homemade, sausage italian bread and says, "I know you can't have this, but just smell it and see how good it is" and slides it by my nose....really pisses me off. I am angry at them for the inconsideration, but I am also mad at me, frustrated and angry.

I'm frustrated that I have to be one to entertain. Most people are afraid to cook for me, but also, not willing to ask or to try.

Just another day in Celiacland.

Wow! My hands would have gone right under that tray and shoved it up in her face! I would have then gone on to explain that gluten makes my extremities do uncontrollable movements when I get exposed to gluten (darned neurological damage!) and therefore I was not responsible for what happens to them when someone brings glutened goodies too close to my nose!

Guaranteed, it wouldn't happen again!

Hugs.

Karen

[Marlene]

I find eliminating dairy and eggs harder than gluten too. I am scared to get tested for anything else because I am afraid I will end up eating carboard (unless that contains gluten too, of course ) Our culture really does include so many food related activities. I used to LOVE food and always had a healthy appetite. Probably because I was starving due to malabsorption. My parents were on a special diet for years and whenever we had them over for dinner I did all kinds of research and made them something special to eat. When we found out about my intolerances my Mom said "Well, I guess if you come over for dinner now you'll just have to bring your own food." Ouch, that hurt. After everything I went through to make a dinner that they could eat?!

I think the key is to keep working away at this until we find foods that we can make which we enjoy. Who has time for that anymore? I also think it is important to take the time to grieve over the stuff we can't have, afterall it is a loss. That might make it a little easier to move on.

And I am so thankful that we can encourage each other through this forum. Heaven knows we get little encouragement anywhere else!!

Marlene

[phakephur]

Wow! My hands would have gone right under that tray and shoved it up in her face!

I was thinking exactly the same thing.

My (former) best friend in town really cut back on our contact since I went gluten free. Recently I chided him about never inviting me to do anything and he actually said "what is there to do with you?" I guess if it doesn't involve going out for beer or pizza then the answer is "nothing".

[Creative-Soul]

I find eliminating dairy and eggs harder than gluten too. My parents were on a special diet for years and whenever we had them over for dinner I did all kinds of research and made them something special to eat. When we found out about my intolerances my Mom said "Well, I guess if you come over for dinner now you'll just have to bring your own food." Ouch, that hurt. After everything I went through to make a dinner that they could eat?!

I think the key is to keep working away at this until we find foods that we can make which we enjoy. Who has time for that anymore? I also think it is important to take the time to grieve over the stuff we can't have, afterall it is a loss. That might make it a little easier to move on.

And I am so thankful that we can encourage each other through this forum. Heaven knows we get little encouragement anywhere else!!

Marlene

I can't believe your parents did that! Wait...actually, I can...there are people who can only apply things to themselves, not others. I think it so rude and downright insulting, actually, some of the comments people make and things they do intentionally . I've found it easier to handle things when I remember to put myself first; my health is paramount and I will stand up for myself, and if you have a problem with that then I don't need you or your negative energy around me!

I do agree with having some time to grieve! The lastest food to hit the dust for me is eggs..oopss..and potatoes. When I am tempted to get mad I think of all the others who have more allergies than I do and I wonder how the hevk you do it!!! Lonewolf, I will be PMing you for some recipes...

[GFBetsy]

Momma Goose -

If I were you, I'd make something really good and gluten free (like cream puffs or something else that everyone loves) and take them over to her house and say "I can't really share these with you because they're so expensive to make, but I just wanted you to smell them and see how good they smell!"

Okay, so I wouldn't actually do that . . . but sometimes visualizing the whole "This is what I'd do/say if only I'd thought of it in time" situation aleviates some of that irritation. At the very least, the thought of the look on her face will give you some giggles!

Betsy

[Jestgar]

Yeah. I'm mourning the loss of dairy and eggs nearly as much, if not more than gluten. All the clever substitutes for those things are made out of soy. Guess what....no soy either. Most of the tastiest commercial gluten free mixes substitute corn for starch and flour. Guess what....no corn. Alternative nut flours are becoming popular. You guessed it....no almonds. Alternative bean flours work great......no legumes. I've been painted into an itty bitty corner. If I ever pull this off and don't starve to death first, I'll be a genius!

Hi Kathy Ann,

I rarely eat most of those things just because I didn't grow up eating them. I'm sure your corner feels small right now, but I don't feel like my food choices are limited. Just like I'm learning not to feel limited without bread (I don't like the gluten free stuff).

I hope that it all gets easier for you over time, maybe once the grieving process has run it's course.

Momma Goose -

If I were you, I'd make something really good and gluten free (like cream puffs or something else that everyone loves) and take them over to her house and say "I can't really share these with you because they're so expensive to make, but I just wanted you to smell them and see how good they smell!"

oooh, or brownies

with whipped cream

and sprinkles