I Am A Mess

[TinkerbellSwt]

I thought all along my family was so understanding with this disease and such. I found out today, b/c of another issue with my mother, that people are tired of dealing with my celiac. That I make them uncomfortable. That they should be able to eat what they want at their own houses. Which I agreed to. but I have been asking lately what foods will be there, and getting upset when gluten is included. Its like cant they just not have crackers for one lousy afternoon??? whats the big deal! especially the crumbly food, like crackers and bread.. and its winter, so its not like I can just go outside and eat.. they dont get that they touch this stuff, bring it over a dish that I can have and voila, now cross contamination.. and they eat these things, not washing their hands, touch the couch and I touch it and voila, I get sick.

I always thought they were sooo understanding. But now I find out I make them uncomfortable. That i make too big of a deal of it. That there is a tolerance level that I supposedly have, like some crumbs arent a big deal only me eating a piece of bread persay, would make me sick..

This is just so upsetting to me, I cant stop crying!

[Merritt]

I thought all along my family was so understanding with this disease and such. I found out today, b/c of another issue with my mother, that people are tired of dealing with my celiac. That I make them uncomfortable. That they should be able to eat what they want at their own houses. Which I agreed to. but I have been asking lately what foods will be there, and getting upset when gluten is included. Its like cant they just not have crackers for one lousy afternoon??? whats the big deal! especially the crumbly food, like crackers and bread.. and its winter, so its not like I can just go outside and eat.. they dont get that they touch this stuff, bring it over a dish that I can have and voila, now cross contamination.. and they eat these things, not washing their hands, touch the couch and I touch it and voila, I get sick.

I always thought they were sooo understanding. But now I find out I make them uncomfortable. That i make too big of a deal of it. That there is a tolerance level that I supposedly have, like some crumbs arent a big deal only me eating a piece of bread persay, would make me sick..

This is just so upsetting to me, I cant stop crying!

[blueeyedmanda]

Ohh Stephanie *hugs*

I am sorry to hear this. You do have every right to be upset. I don't blame you for asking though, you don't want to be sick. It is not like you are asking them to jump off a bridge, no crackers is a very simple request, why couldn't they have fresh fruit?

I hope that in the future your family comes around.

[Ashley]

Don't let your family's attitude get you down. People are so igornant. They think they're sick and uncomfortable with your disease? They don't even have it! Do what is nessesary to keep yourself healthy. It kinda sucks to have to bring your plates, but, that's what it might take.

Hope the situation lightens.

-Ash

[Slackermommy]

Oohhh, I know, I know. They try, but it's so hard for anyone else to understand. I eat Sunday dinner at my parents, with my kids and my brother's family...and they try to help, but I had to switch my dinner plate twice because of that breadcrumb thing you mentioned , and it is hard. Today I only ate a bit of turkey and mashed potatoes and some salad. (I told them all that I would host a Sunday dinner soon...and of course it would be gluten free.)

When I am there I pass the side dishes..always serving myself 1st, then giving it to the table. What about not having your plate on the table, then get your stuff from the kitchen and then sitting down, then all they have to do is keep the bread on the other side of the table?

It's so hard for people who don't research this, who don't live it, to understand it. One of my sister-in-laws wonders why I think going gluten free is such a big deal. You know what? She just doesn't understand it. I am not mad at her, it's like blaming a child. Don't let yourself get upset about someone else's ignorance, take that energy and find a way around it.

I hope you feel better soon, and it stinks..it really does.

[CarlaB]

Sorry, Stephanie, family can be the toughest group of all sometimes. Just bring your own food ALL the time, that way IF they ever try to accomodate you it will be a pleasant surprise instead of a disappointment each time they don't.

[Lisa]

Stephanie:

I can understand why you are upset. I don't have a whole lot of family to relate to so I don't have the personal interchange with family. I am sure that it is difficult when you have family gatherings. You need to recall, when you first learned about Celiac, how difficult the concept is. I had never heard of the word before being diagnosed. You have lived with the symptoms. You know how important it is.

It is tough concept for those that have not experienced the symptoms. Sometimes, when you don't experience something, it is hard to comprehend. Celiac is not always black and white.

But it is always important that you are in charge of your life and only you can control your actions, behavior and your welfare. You can still have a family gathering if you prepare a little ahead. Bring foods that you can enjoy and keep them separate for the other food.

I would never want to be a burden on someone else to maintain my health. That can only be insured my me. Unfortunately, that's the name of the game these days, at least for me.

Love your family for that, fly low and lay low. Bring your food and smile.

[happygirl]

Stephanie,

I just wanted to add my support to you right now. It is hard when something that is part of your life is "attacked" per se, by your family. Its hard to accept that people that we are related to can be like this.

Laura

[johnsoniu]

>>Hugs Stephanie<<

Sorry you have to deal with this from your own family.

This got me thinking again about the insensitive co-workers thread, and I think their are some similarities. When we are first diagnosed and people find out we are a celiac, most people are compassionate. A few will take the time to find out what it's all about and what we must endure for the rest of our lives. And that's part of the problem, most don't understand this is a life long thing. If I had a nickel for everytime someone said "so when you get better, you can start eating wheat again, right?"

After a while though, I think the novelty( for lack of a better word) of it wears off for them. 90% of them have been on one diet or another and eventually cheated. They see Celiacs as just some diet we're on and can't seem to wrap their minds around the concept of the dangerous ramifications of us going off the diet. And if they can't grasp that fundamental concept, they will never fathom issues like cross contamination. I think human nature just prompts the majority( friends and family included) to chalk it up to us being some sort of picky, paranoid, polyanna.

I think the best we can do is just chalk up peoples sometimes hurtful and insensitive behaviors to blissful ignorance. I know that probably doesn't help you right now Staphanie, but their are people here who DO understand, and out thoughts and prayers are with you.

[Phyllis28]

Love your family for that, fly low and lay low. Bring your food and smile.

I agree with Momma Goose. Bring you own food and enjoy everyones company.

[mamabear]

Stephanie,

Maybe ..since they are family.....they know that THEY might have it,too and it makes them uncomfortable from that standpoint?? You know, what you don't know won't hurt you?

Or maybe it's just a celiac fatigue thing...I have had my worst glutenings from family meals, so I depend on getting my own gluten-free condiments,etc.. and boring them with asking,asking,asking what's in there??? Since I live 400 miles away, I guess they put up with it when I get a chance to go visit! My old Dad still asks if I want toast in the mornings! I say yes, but I doubt you have the kind I can eat! Like MommaGoose said......smile.....and don't let them hurt your feelings. And if they do, you have a TON of "cousins" here !

[sparkles]

I am sorry that you are feeling upset. I know that over the years things have been said and done to me because of my diagnosis that have left me feeling very left out and vulnerable.... BUT with age comes a little wisdom. I now bring my own food in my own tupperware container which I do NOT share with anyone. I have enough servings for me and I heat it in the microwave (covered so as not to expose any of my food to an accidental mess in the microwave) and then put it on the plate and that is my meal. I often bring extra just so I don't feel too left out when everyone pigs out on holiday meals. I usually bring a dish to share at the holidays and that is usually fruit and cheese, gluten free crackers and gluten-free sausage. I just avoid the dish I made up for the family and take what I want from the extra container that I bring. I bring my own desert and eat it when everyone else is eating theirs. I have found out that it is just easier. I do not ask what is in stuff. I just assume that I can't eat it because it will contain gluten or be CC. I just tell the host and hostess that I will bring my own meal so that no one has to worry about gluten. I think that most people are relieved. I have a d-i-l who loves to cook and she will cook a gluten-free meal when we are invited over to their house when it is just my hubby and me. It is really so much easier to just bring my own meal. I try to make it the same as the meal served so no one thinks anything about it. It is just so much easier and then I am not stressing out about G or CC. I think I kind of understand where people are coming from when they are uncomfortable with cooking gluten-free when they are not used to it. My mother-in-law was recently diagnosed with kidney disease and she is on a very strict diet to help control the disease. It is a pain to try to follow her diet as she can not eat lots of fresh fruits and veggies and there are a whole lot of other restrictions.... I keep special things in the freezer for her but inevitably my hubby will bring her over when I have nothing in the house that she can eat. I feel very awkward.... though my hubby is really good about going to the store and getting something that is on her diet... it is frustrating. Good luck. I think if you just start bringing your own meal in your own container that you do not share, it will be a whole lot easier on you and it will eliminate the frustration that others might feel. Good luck...

[Jo.R]

I am so sorry, how rejected you must feel. I am assumeing that it's not about the food, but about being accepted? Just sending some sympathy.

[TinkerbellSwt]

Yeah, thats it. Its not so much about the food. They always make something I can have, just usually they cross contaiminate it. On the superbowl, everything was kept away that wasnt gluten free and there really wasnt much... but while I was in the kitchen feeding my son, my sister in law made her girls uncrustables sandwiches and had them eat them at the table where ALL the food was for the game. I didnt know about it until I got home. I was wondering why I got sick??? duh! I am just feeling alone. I just thought my family understood and I guess they dont. or like someone said (sorry I forgot the name) the "novelty" has worn off, now its just life for them too.. and they dont like it.

Thanks for the support though. I will try my best not to let it affect me today. I wrote my mom a huge email about it today.. and she didnt even respond to me. ouch, that hurts. I would rather her say oh well and at least answer me..

cant always get what we want though..

[gfp]

sweetie, bring your own food, they should be able to eat what they want, just as much as you should, just bring your own food, tehn you can eat whatever you want. its impossible to get sick from the couch, what are you? Licking the couch? If the couch really made you sick, do door handles, railings, public restrooms, tables at restauraunts and everything make you sick? I think its a little unlikely.

Yes, yes, yes etc. the only safe thing is the handles on restrooms since we tend to wash our hands after touching these.

You obviously mean well ... no question but I think you misconstrued her worries.... and perhaps (I hope) you are luckier with your family.

You're being a little paranoid, just be careful about washing your hands, i'm sorry if i sound unsympathetic, i have a big family, where, whenever i go, i bring my own food, because, there is no point torturing 20 other people about me not being able to eat gluten. They eat what they want, and i bring whatever i want in a nice little sealed tupperware.

And your pants, skirt .. children... etc. etc.

This is I think the problem that TinkerbellSwt has with her family....

Its acceptable to wash your hands after using the bathroom but clearly its not acceptable for her to wash her hands or insist people wash theirs before touching them...

Paranoia is a perfectly normal and healthy thing, its used by every lab handling toxic chemicals, every construction site etc. indeed its legislated... because unforseen things will happen...

If people were handling rat poision then they would be expected to wash thier hands before touching food... yet commercial rat poision is nowhere near as toxic as gluten is to a celiac. Indeed if you worked in a lab many common kitchen cleaners would be classified as toxic and safety proceedures followed handling them. If you enter a construction site you are required to wear a hrd hat... even if the construction site is essentially finished and they are just doing wiring and painting...

In French there are different words for an irrational fear and one which is rational... A fear of heights that can kill you is not irrational... a fear of poisionous snakes is not irrational.. indeed many horses are terrified of snakes when they have one of the best metabolisms for actually surviving a bite...

This is because a fear of something potentially injurious is a good thing to have... the problem is if you are scared of all snakes and even blind worms or spiders... then this becomes irrational.

Clearly, they just don't get it. It doesnt' mean they don't love you, they're just stupid in the gluten department. Good luck, stop worrying so much about getting glutened by the couch, and bring your own food! I also want to say, please stop having a pity party, there are people out there with actual diseases cthat can't be stopped by diet restriction, it's not that bad, really. Go have some ice cream, you'll feel better. And, your family doesn't not love you, they're just dopes, my own mother accidentally fed me chicken broth with wheat starch in it, and i was one sick puppy really soon after that, so even the good ones make mistakes, so, you shouldn't put your health in anyone elses hands, especially since you have such a fear of CC. I know celiac is tough bc we have to eat to live and some foods are posion, but in mo there are people who seem to enjoy bieng sick and just want to have one big pity party, life is too short, i'm sure you're a better cook than whoever was making dinner that night anyway!

This is your perception and doubtless you are correct but that doesn't mean that all people who are regarded as this really don't have a good reason, even if that reason is just depression or a chemical imbalance... indeed it could again be regarded as a survival mechanism... a plea for help that they can't handle?

One common such group though a little extreme illustrates this in those people who do self harm or half-hearted suicide attempts... are often regarded as attention seeking... perhaps they are but it doesn't mean nothing is wrong with them...

Huge cultural differences exist... in some cultures a lot of stock is put in not complaining... some cultures have no word for PMT... but this doesn't mean it doesn't exist, it just means they don't recognise it, give their wife a good thrashing and send her back to work....

Many of us have deliberatly cultivated a over developed protection mechanism for gluten.... for some people that is what works for them ...

Anyway... I just got invited to a dinner... I dread to think how to turn it down but luckily my girlfriend is invited to another dinner the same night... (here's to hoping the inviter doesn't change the date) ... but the real problem is I know my friend will TRY and cook gluten-free... I also know she doesn't get it... after all her SISTER was a celiac but she grew out of it!!!!

The real problem is people who do cook but don't undertstand and then get all hurt... like if you had insisted on seeing the packet for the stock....

One thing I have had to do is stop cooking for others so often... partly helped by having a smaller appt.

But the problem is I'm well known for cooking.. people fight to be invited then like to reciprocate only I can't accept the reciprocal meal and then they get offended ... this is partly because Im known to be a great cook... they think its because I don't want to eat their food because of this but its not.. its the gluten issue and CC. I've found it easier to take food to places where their are no meals owed etc.

[CarlaB]

but while I was in the kitchen feeding my son, my sister in law made her girls uncrustables sandwiches and had them eat them at the table where ALL the food was for the game.

I wrote my mom a huge email about it today.. and she didnt even respond to me. ouch, that hurts. I would rather her say oh well and at least answer me..

cant always get what we want though..

The only ones that truly get it are the ones that live with you and see you react to the contamination. The others will never get it. I always bring my own food to something like the Superbowl party ... I just don't want the contamination risk. The ONLY time I eat what someone cooks for me is if that person is really willing to be open to hearing HOW to cook for me ... If there's any doubt, I just bring my own.

I think it would have been more appropriate to call your mom. Make it a point to say positive things in emails, make times you are meeting with people, make small talk, etc. But, anything that is negative is best handled by phone or in person. You should call your mom and apologize for sending the email rather than talking with her about it (not for what you said). Emails don't have tone of voice or facial expression, which are important when dealing with a sensitive issue. In an email, she might think you're mad, when you're really hurt.

[Cam's Mom]

Hi!

Maybe I shouldn't step into this hornets nest...but here I go. I think maybe, just maybe it is not so much about the food as it is the lack of support that one gets from ones family (sometimes).

My experience is that my daughter has celiac and type 1 diabetes - my family loves her to death but when all 16 of us with extended generations get together I can always find some way to get my nose out of joint and feel unsupported. Get togethers are hard - any time, any where. That is just something that we need to shoulder and sometimes we feel like we are shouldering it alone (and maybe we are). I bring all of my daughter's food with me but then right after my daughter has eaten all of the carbs she can have my mother inevitably screams ICE CREAM at the top of her lungs so all her grand children come running. It really hurts my daughter and I get upset because I feel really unsupported by my mom. Or my other favorite - my daughter has to eat a very limited and strict diet and every bite is counted and then all her cousins sit down and complain because they only like KRAFT mac and cheese or Elios pizza or oooooh I don't want the crust on my bread - I don't care about the food . . . it just takes a couple of family members to acknowledge that it is hard and they know it is a tough position. My daughter is lucky because I am the stress buffer between her and everyone else - If I think anyone is being insensitive I pitch a fit and then they bend over backward to make her feel better - we all need a big screamin' mama on our side and I know it hurts when you don't have one. I'm just glad my daughter always will. Again, it is soooo not about the food - we're all used to carrying tupperware with us all over the darn place. My son who is 6 asks his classmates to wash their hands before playing with his sister - he says it's not just about being careful, it's about respect! So right!

And another thing . . . what's with family members who refuse to acknowledge that this is genetic and that this might be something that they have? My family acts like my kid is an alien visitor from another planet - no genetic link to us??? I could name 4 out of the 16 that are major candidates for celiac. Rampant auto immune disease in our family: rhumatoid arthritis, psoriasis (big time), lupus and crohn's. But perish the thought of imperfection and giving up your beloved KFC! And then we're just the obsessive parents that won't let the poor baby have a cookie - right? OOh, I sound a little angry, sorry. Anyway, TS I understand and I wish I could have you over for dinner - my couch is clean enough to lick!

B

[Guest BornToRide]

I am so sorry - they really have no idea how devastating this is unless they have experienced it themselves. I like to compare this to having eaten something really bad or having the flu. If that does not help, there's always castor oil I guess to help some people experience a little what sufferers go through

[CarlaB]

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[jerseyangel]

Stephanie

I'm so sorry that you are upset. It is so much worse when it's family that dosen't understand.

When I go anywhere, I take my own food. If it's to someone's home, I say something like--'I'll just bring what I need, that way you don't have to worry about cooking for me'. I might say something humorous like--'I couldn't cook for myself safely, either at the beginning'. It kind of puts everyone at ease.

It takes a little planning, but this way you always get enough to eat, and don't wind up sick.

I hope you feel better soon!

[AndreaB]

Hugs Stephanie.

I'm not super sensitive but my mom's glutened me a couple times. She did real good last time I was at her place for a meal though.

It's hard to understand how sick cc can make someone, let alone the disease itself if you don't have it or haven't taken the initiative and time to learn about it.

Hope your day today is better.

[CarlaB]

I might say something humorous like--'I couldn't cook for myself safely, either at the beginning'. It kind of puts everyone at ease.

This is SOOO Funny!!!

[jacqui]

I hear ya! My family has recently told me that they were telling people I was "nuts" or of course She has it... BUT now my little sister (35 y/o) 10 months later went for a physical and had the celiac panel blood work done and she has celiac, complete atrophied villi, labs all greater than 100, Vit. B, D,calcium and iron deficiencies and osteoporosis. She has since recanted her comments via e-mail to the effect of Well, I guess Jacqui isn't crazy - I have celiac disease. My family says it lovingly, but I know there is truth to it too. No one really started to pay attention until my daughter and sister were diagnosed b/c I have been sick for 10 years. And everyone says they will be tested, but like my sister it took her 10 months. My cousin works in her doc's office and they draw the blood there and she still hasn't been checked. Others swear they don't have any symptoms so why should they do it. Or they say well, our family is cardiac stuuf not cancer, so even if I have it what does it matter if I don't have symptoms...I could go on and on.

Has anyone in your family been tested??

Do not cry! You need to take care of you! If you have to tell them to wash there hands, oh well. Depending on your $$ situation you make the food when they come over, so they know that gluten-free food is just as tasty and can be a lot healthier if you cook without all the cheeses...(well except the bread - it's just OK - most tastes like English muffin bread which I love - but I do miss french bread - but I am over it.) I do not know if you have celiac disease I forgot to look at your profile, but if yes buy Dr Greens book Celiac Disease A Hidden Epidemic. It was first published in I believe May 2006. It is excellent and it goes over family reactions, coping...

My in-laws are the worst! They just don't get it and my father in-law really has no desire to get it EVEN when his granddaughter has it too! My daughters stuff came back just like my sisters but she also has stunted growth - her bone age is less than 5 y/o and she is 61/2y/o. My MIL does the same thing - she is proud she remembered corn tortillas but then she touches the flour tortillas and then the supposedly "gluten-free" food... To top it off they know our whole house is gluten-free b/c of cross contamination issue and for Thanksgiving they showed up with a crumbly messy apple pie! It was everywhere! When we gave them the left over (whichwas almost all of it except what they ate) they told us to keep it. Robert stated again - "We cannot have gluten in the house." They reply, "We'll Madi can have it or Drew."

Family can be tuff but hopefully someone will take an interest and maybe coming from someone other than you the rest will start to listen. Does that make sense?? Sorry, I have neuro stuff with celiac disease too.

Good luck and NO MORE TEARS!!

Jacqui

[TinkerbellSwt]

Thanks for all the positive support. You know who you are. I dont have pity parties, in fact the reason why this all is such a blow, is that it never happened before. Carla, you are right about the email thing, I did that even before I read the thread again. We are talking. I explained my worries and such to her. I said I will be my own advocate. If my brother is going to have a party at his house, full o gluten, maybe we cant go there and stay during meals and after them. Before hand is great. But after, I cant expect the kids to catch themselves with the crumbs.

I really do appreciate everyones positive responses. I am not even going to reply to those that are negative. I got rid of all my negativity today.. I am not letting it back in. Thanks for all the hugs and such.. you guys are the best!!

[CarlaB]

Stephanie, I'm so glad you didn't take that wrong! I certainly learned the email thing the hard way ... I'm glad it worked out better when you spoke with her.