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Irritated


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#31 JNBunnie1

 
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Posted 25 November 2009 - 03:57 PM

Why would I make a terrible spouse? Is it because we've removed the products containing gluten from our house? Is it because I do the legwork to find restaurants that she can eat at? Or, maybe, it's because I spent the time composing a large email with links to inform her and my family of the situation.

What shortcomings do I have? I said I was initially resistant, but quickly realized the benefit. I don't have any anger over the situation we are in. It isn't ideal, but that's life.

I guess it's unfortunate you all have such crappy friends and family, but don't go telling me I'm going to make a terrible husband.

This site seems to be helpful for a lot of people, but you have done an excellent job of making me feel unwelcome. Thank you for that.

I find it fascinating how many new people come to this website, post something negative in tone, get a negative backlash (this particular one was admittedly over the top), and then complain about being made to feel unwelcome. I feel a need to frequent more message boards to see if this is a Celiac board thing or an internet thing.....
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#32 carsondcat

 
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Posted 25 November 2009 - 11:09 PM

I find it fascinating how many new people come to this website, post something negative in tone, get a negative backlash (this particular one was admittedly over the top), and then complain about being made to feel unwelcome. I feel a need to frequent more message boards to see if this is a Celiac board thing or an internet thing.....


That might be because Newbys feel overwhelmed by what's going on in their lives.... I wasn't daunted when DX 9 years ago just relieved that i had an answer for 38 years of ill health. i wasn't angry and cry why me, even now people still think I'm missing out but I never have because i would rather not go back to the poor wretched creature I was, and if all it takes is a change in eating habits then so be it.... But people do need to vent their frustrations once in a while and where better to do it than a forum where we've all been there and done that and wear the T-shirt rather proudly (from CafePress) :lol:
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Believe nothing, no matter where you read it, or who said it, not even if i said it, unless it agrees with your own reason and your own common sense....... Buddha

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#33 jackay

 
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Posted 12 December 2009 - 08:04 PM

I am new to being gluten free and don't understand how it is possible to eat at someone else's house unless they live gluten free. If I have to be so careful at home that I do not use plastic, wood or Teflon and that my cooking utensils and dishes are absolutely clean, how can I be sure of that in someone else's house? I'll be going to my mother-in-law's house for Christmas and will eat before I go. I don't have much of an appetite so it won't be hard to watch others eat. I also emailed my daughter-in-law that there will be no home baked treats at our house this year. I will not be baking gluten free since at the present time I cannot tolerate eggs or dairy. The response was positive. The grandkids can fill up on candy this year! I'm willing to buy that.

My sister-in-law told me that she made gluten free rice crispy bars with rice chexs and jet puffed marshmallows for a coworker that can't have gluten. I'm sure she used a rubber spatula to get the bars out of the pan she mixed them up in. Maybe she only thinks the coworker ate them.

Another sister-in-law sent me some gluten free cookie recipes. She lives about a half hour from health food store that sells a lot of gluten free items. She is willing to go out of her way to shop there for me and bring me items when they come home for Christmas. I am touched! Some people do understand :)
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#34 brendygirl

 
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Posted 12 December 2009 - 09:19 PM

When I get the doubtful response, I usually add, "Yeah, I'm lucky all I have to do is stay on a gluten free diet. It's better than having to take medicine or get shots. My brother's throat swells and he could die from eating poultry and he almost got killed by a fireant bite! Plus, if I didn't follow the diet, I could get lymphoma or be like the 27 year-old in my support group who kept breaking bones because she had osteoporosis!"
Once they hear that, they usually settle down.

I also find in general, that women are often interested in what other people eat. They wonder how you stay thin (as many celiacs tend to be thin). They think gluten-free is a fad and that we do it for weight control, like how some people keep smoking to avoid putting on weight. I'm always amused when servers look shocked when I order the potato or fries (since it's obvious they presume I'm on a low-carb kick). They often say, "So potatoes are ok?" even after I've explained my "allergy" to wheat. (Allergy is more severe sounding and more generally understood than intolerance.)

My mother-in-law didn't like anything that gave me "special attention". She liked to be the center of attention. She was nice to me and we got along, but when I got my engagement ring, she went out and bought more diamonds for hers, so it would be bigger.

I think the presence of celiacs inadvertently makes people feel guilty for what they eat, sometimes. People tell me, You're so healthy. I'm not. Even before I was gluten free, years ago, I remember a guy stopping in his tracks at work in the lunchroom, announcing, "She's eating a potato chip!" I guess he just thought I was a health nut. Actually, I was just a vegetarian who also ate seafood.
People drink "hatorade" and froth at vegetarians, too. There are even bumper stickers that say, no meat? Eat a vegetarian!

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"If you want breakfast in bed, sleep in the kitchen.." ---Ed Polish

#35 Korwyn

 
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Posted 16 December 2009 - 08:22 PM

...I feel a need to frequent more message boards to see if this is a Celiac board thing or an internet thing.....


It's not an internet thing, its a people thing but it is magnified by the lack of societal constructs normally provided by face to face contact. There aren't any repercussions for socially inappropriate behaviour. =D People tend don't feel the social constraints they would in RL. I've been out here since there was an internet and way back when there were only computer "bulletin boards" and as more people get onto the internet the average social behavior age continues to decline. Just like a mob's IQ is equal to the average IQ divided by the lowest individual IQ in the mob, a social group has a behavioral age equal to the average social age divided by the social age of the youngest member of that group. My personal observation. :)

On a totally unrelated note, look up Godwin's law. :) Also Benford's Law of Controversy.
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Undiagnosed for 20 years since first symptoms.
March 2009 - Negative Blood work
April 24, 2009 - Gluten-free
April 29, 2009 - Notably positive response to gluten-free Diet.
May 2, 2009 Dairy Free
May 6, 2009, Soy Free
May 27, 2009 Enterolab Results: Positive Anti-gliadin IgA, tTG IgA, Casein, HLA DQ2.2, HLA DQ8
June 4, 2009 Refined sugar free (except Raw Honey, pure Maple syrup)
June 29, 2009, Dad diagnosed Celiac by GI specialist via blood work and dietary response.
July 2009, Dad's gene test: double DQ8! Thanks Dad - I'll try to get you something nice for Christmas! :)
August 8, 2009 Really Soy free this time - Thanks Blue Diamond for the soy lecithin in the almond milk! :(

#36 mndtrp

 
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Posted 23 December 2009 - 07:48 PM

I find it fascinating how many new people come to this website, post something negative in tone, get a negative backlash (this particular one was admittedly over the top), and then complain about being made to feel unwelcome. I feel a need to frequent more message boards to see if this is a Celiac board thing or an internet thing.....

In my particular case, I was trying to provide a differing opinion as to why some people don't help. It was met by one constructive post, and then an attack on my character. It does happen on other boards, some I participate in, others I just read. Many leniently moderated sites, as in allowing personal attacks, tend to lose new people quickly. Others, where new members are generally welcomed as opposed to being made to feel like they are doing something horribly wrong, seem to retain the newbies. As Korwyn said, with no accountability, people will do whatever they please. The few sites I frequent do retain a sense of accountability.

We are apparently fortunate to have the friends and family we have. After an initial pushback from a few people, everyone has been helpful and supportive. My coworkers find us info and places to eat, as well as recipe books. My family had an entirely gluten-free Thanksgiving dinner, and were genuinely interested in our situation. My fiancee's family has attempted to help, but require almost constant reminding. My friends have gone out of their way to find gluten-free foods for when we visit. Friends of friends are even supportive. We are simply open and honest about everything, and people help us in any way possible. Granted, they make mistakes, and some don't quite grasp that even an unseen amount can hurt, but we use that as an excuse to educate, not get all bent out of shape.

One thing I have found, though, is that getting upset with the people who don't understand, or don't want to understand, is a poor way to get them to change. This goes for all walks of life. I deal with people that can't grasp some of the simplest things about our profession, but getting mad at them doesn't help.

It's a drag going out to eat, because selections are limited. On the other hand, health is far more important than any food, and it's made shopping more exciting and challenging. Finding new recipes again is fun.
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#37 VioletBlue

 
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Posted 29 December 2009 - 12:07 AM

Okay, need to get something off my chest. This is petty I'll admit, but I just figured it out the other day - only took me three years - and it's been annoying the crap outta me ever since. I have a SIL who's a tireless volunteer for the American Cancer Society. Goes all over the country as a volunteer for them. No sacrifice too great etc etc etc.

After I was diagnosed and I went public with it she stopped sending a christmas present, no explination. I found it odd but I didn't particularly want to ask why. I continued sending some token gift or other. I realized why just last week when she posted a photo on her Facebook page of all the dozens and dozens of cookies she'd just made. She now sends out cookies to friends and relatives at christmas. While I admit it was thoughtful of her not to be sending them to me year after year, her approach was somewhat cold. By contrast one of my best friends goes out of her way every year to find something little and gluten-free to send me like a small box of See's Chocolates or something she found at Whole Foods or Henry's. I mean I'm thrilled with a $5 box of See's Candy because the nearest See's is a two hour drive for me. How freaking hard is it . . . . .

Anyway, that's my rant for the day.


Tired of hearing about spouses and parents that don't believe /support the Celiac diagnosis or treatment. People will shave their heads in support for friends or family having chemotherapy but giving up beer and pizza etc is a great inconvience for relatives of those with Celiacs.


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"My mother always told me, it's okay to play with a man's mind
as long as you put it back where you got it when you're done with it."

#38 MyWifeHasIt

 
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Posted 29 December 2009 - 01:43 PM

In my particular case, I was trying to provide a differing opinion as to why some people don't help. It was met by one constructive post, and then an attack on my character. It does happen on other boards, some I participate in, others I just read. Many leniently moderated sites, as in allowing personal attacks, tend to lose new people quickly. Others, where new members are generally welcomed as opposed to being made to feel like they are doing something horribly wrong, seem to retain the newbies. As Korwyn said, with no accountability, people will do whatever they please. The few sites I frequent do retain a sense of accountability.


IMHO... If your intention was to provide a differing opinion (and by the way, I'd say your 1st/2nd paragraph was true to this) then you may have wanted to state that upfront and could have possibly put more effort in your choice of words. For example, if when you stated "Driving is polluting the air we breathe every day. Are all of you complaining about people and their inconveniences giving up your car? Or are you making the choice that the benefits outweigh the negatives? Why is there so much anger for people who don't change?" you would of used "we" instead of "you" (as in including yourself so as to not put yourself above others), it might have come across a bit more receptive. Again, I thought you made some good observations but agree that the tone (which is almost impossible to perceive in written form since we cannot see facial expressions nor hear volume) seemed harsh and unkind. Also, I've found the hard way that it is best to be apologetic when misunderstood versus being defensive (and that being "right" is not as important as being kind and understanding). The thing about forums where people are expressing themselves as best they can (we come from all sorts of backgrounds, education level, life experiences, social status, etc.) is that we're going to inevitably offend somebody... but regardless, I want to believe most people on here are sharing with good intentions.

My wife was just diagnosed with celiac disease and having found this site has been great... I hope to become informed and be able to help her with this as much as possible. She's only 38 and was a very active and energetic woman being a marathon runner, always active in one form or another (e.g., yoga, working out, dancing, etc.) despite apparently having had this for many years given her symptoms (diagnosed with IBS since very young, a few years back with thyroid - Hashimoto's - disease, and of late... loss of energy, anxiety, depression, and... what "broke the camel's back" heart issues to the point where she was wearing a heart monitor since she was loosing her breath and had irregular heart beats). These recent events prompted her to continue to look for answers as doctors were not being very helpful. And... of all the ironies.. it was a freakin chiropractor that actually gave her hope and got her steered in the right direction (at one point I used to think they were quaks... was I wrong). I am just now beginning to comprehend this disease and what's ahead for her and am glad and very hopeful that she can beat this (or at least be able to live with it ... knowing is half the battle). Several posts on here have brought me to tears as there's nothing like reading real life stories of people/family/friends coping with celiac disease to make something that was foreign to me a couple of days ago seem very real. I am very grateful to all of you and hopeful that the collective thoughts and energy as they're being put in writing via this forum will help my wife in one form or another.

I sincerely thank Scott and all of you for your contributions. Thank You, Thank You, Thank You!!
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#39 pchick

 
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Posted 29 December 2009 - 02:26 PM

My wife was just diagnosed with celiac disease and having found this site has been great... I hope to become informed and be able to help her with this as much as possible.

I am just now beginning to comprehend this disease and what's ahead for her and am glad and very hopeful that she can beat this (or at least be able to live with it ... knowing is half the battle). Several posts on here have brought me to tears as there's nothing like reading real life stories of people/family/friends coping with celiac disease to make something that was foreign to me a couple of days ago seem very real. I am very grateful to all of you and hopeful that the collective thoughts and energy as they're being put in writing via this forum will help my wife in one form or another.


I feel the same way... I was diagnosed "severe gluten intolerant" by my ND in July 09 so it's still fairly new to me too. And it's hard... especially the holidays! Since I found out about my intolerance, I've been really good at avoiding all gluten, and cooking and baking all my food from whole foods with lots of veggies and no sugar. I was feeling about 50% percent better overnight just from the diet change... then I was getting sick and tired a lot and found out my vitamin D and B and iron levels were far too low, so now I'm taking a bunch of different suppliments and am feeling GREAT!!

My little rant of late is this: My hubby, who is very supportive in most ways, doesn't think using flour around me makes any difference. I honestly didn't know for sure myself until last week when we decided to bake a bunch of goodies to give to friends as gifts. I was so good and didn't eat any of it or touch my mouth or eyes or anything while I was baking (which is tough since I usually eat as much raw batter as finished product). I made myself a gluten-free blueberry tart and some gluten-free fudge to snack on so I wouldn't be tempted.

Imagine my dismay the next day waking stiff all over and nauseous. I got through most of the day before I started vomiting (I have BAD constipation so when I get "glutened" I get real sick and bloated and then everything in my tummy goes the other way). I spent 12 hours being sick like that and now it's 3 days later and I feel like I'm 95 years old ~ all my joints are popping and hurting, my head is pounding, my face broke out, my tongue swelled up, my throat hurts, I'm super depressed, and am SO TIRED, all my muscles ache and some are cramping... right back to how I was before the diet change.

I'm trying to stay positive and the one good thing that came out of all this is that my husband now takes me seriously and has trashed all flours and bread, even the goodies we made, out of the house. The thing is even though this food NEVER made me so sick before, so I'm a little surprised as well. Nothing like an experience like this to KNOW I will never intentionally eat or even be around flour and other glutens if I can help it.

So good luck to everyone getting through the holidays ~ it can be so hard. Especially when people think you're making it up (like many of my "friends") I'm SO glad to have this forum to read or write on when I need a little support. I am very appreciative... THANK YOU
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#40 gfp

 
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Posted 29 December 2009 - 02:56 PM

In my particular case, I was trying to provide a differing opinion as to why some people don't help. It was met by one constructive post, and then an attack on my character. .....

One thing I have found, though, is that getting upset with the people who don't understand, or don't want to understand, is a poor way to get them to change. This goes for all walks of life. I deal with people that can't grasp some of the simplest things about our profession, but getting mad at them doesn't help.


You inadvertently pulled a few strings.

For quite a few reasons one of the most traumatic experiences many of us have and do face is friends and relatives who refuse to understand, don't want to understand or can be plain nasty. (often a combination)

Quite often that friend or relative is in denial ... they have problems but refuse to admit them.
It can be extremely traumatic because one side is convincing themselves' eating wheat cannot cause those problems and moreover they often go to incredible lengths to prove it.

Sometimes they think we are tricking ourselves, sometimes the doctors are tricking us ... and sometimes they go to the lengths of trying to prove we are making it all up by deliberately poisoning us!

I am usually quite assertive but as someone else remarked I suddenly become non very non-assertive over my celiac disease.
I am frankly sick and tired of saying no ... but there is something else as well. I am not trying to draw attention, quite the opposite ... I just don't want to keep being put into situations where I either have to keep saying no I can't have one sandwich .. or one crumb...

My mother was one of the unbelievers ... and like they say "be careful what you wish for, it might come true!".
She would promise etc. and yet she would sneak in wheat products "to prove to me" or "because I was just trying to get attention". (I was nearly 30 at the time)

As I said, those that protest-eth the most often have reason: A few years later my mother was getting worse and worse problems but of course she wouldn't believe me. Indeed, it was everything BUT wheat ... but I eventually tricked her into getting a celiac test. As I said, be careful what you wish for!

You probably guessed it came back positive and you would think that would be the end of it and for a while it was.
She actually did apologize and eventually got a lot better and said she was so sorry to have tried to trick me into eating gluten and now she knew how bad I felt and ....

Great until about 3-4 yrs ago .. and my mom has decided she can eat the CODEX gluten-free, because her doctor told her. I know I cant eat it and I know she can't (When you visit you can tell but I'll not go into detail)
Any prizes for guessing what she did next?
She fed it to me and lied!

I visited for a week and got sicker each day... eventually (between toilet breaks) I went through the bins and found the packets she had thrown out (keeping only the transparent inner packets).

She had fed me the stuff 3 times a day... even when I didn't want 'bread', methodically.

Why would she do that? I believe she wants to justify eating it herself ... she knows it makes her sick but she won't admit it and I keep telling her why take the risk.... so she deliberately poisoned me!

Many of us have been through very traumatic experiences with friends and family. This is my most extreme case but I think it might illustrate just how bad you feel when a close relative or friend simply refuses to believe you.

I'm sure my mother has a different story ... I'm sure she will say she didn't realize, that she didn't read the labels, that aliens came in the night and put the discarded packets in her bin???? (the last one might be stretching it) ...

Not everyone does it for evil intent but some do ... when someone does then it is a very traumatic thing and the closer the person is, the more traumatic.
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Fere libenter homines id quod volunt credunt. (JC, De Bello Gallico Liber III/XVIII)

#41 Diva1

 
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Posted 30 December 2009 - 05:02 AM

Wow.....I am truly irritated at my mother in law...she invited my husband and myself over to dinner tonight b/c my brother in law, wife, and son are visiting. I asked what we would be having and she said roast, potatoes, etc. I asked if she had put anything like a seasoning packet or something in with the roast, etc. b/c of my celiac's. (I am newly diagnosed as of Jan 9, 09) and was telling her how I feel so much better, and her response was "well doctors will tell you anything to get you to eat healthier, they make up all kinds of syndrome's" OMG....I was stunned...and absolutely said nothing...I didn't know what to say....so I said (after a few minutes of silence) well I guess we will see you later........

Spoke to my hubby right after and vented....he will be talking with her later...I told him to wait until after the family is done visiting...why make them uncomfortable...and if I get sick...I just won't eat there again...I will bring my own food...(I still may do that anyway, probably will) Darn her!

Anyway..thanks for letting me rant....thank goodness for this site.

I understand your venting....its better to insult your taste buds than insult your bowels....so if you don't know the answer is no...eat the veggies and or bring your own food....
Diva
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Gluten free since Oct 1 2009
Lactose free also
Negative celiac although some in my family
Soy intolerant

A prudent question is one-half of wisdom

Stressed spelled backwards is Desserts

#42 OptimisticMom42

 
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Posted 30 December 2009 - 07:01 AM

Hello Everyone,

I just have to share this story with you. My DD15 and DS's girlfriend17 visit often with Grandma (my ex-MIL) 1/2 a mile down the road. Grandma is a very talented and loving person but we have never seen eye-to-eye. Only recently she has started to admit that her criticisms of me were deeply rooted. Like when she said that my going to college was a waste of my husbands money, she deeply regretted not being able to go to college herself. He didn't pay for it but that is beside the point.

Anyhow, after much fussing and testing DD15 and DSGF17 are gluten free. Both families are littered with celiac genes. Grandma was doubtful. DD15 while visiting grandma went off her diet and ate a whole bunch of "normal brownies" and broke out in a horrible rash. Big red blotches everywhere. Grandma is now scared to death of feeding those girls gluten.

DD15 had fifths disease. She got it from her BF :D
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Dx Celiacs March '09

#43 GFzinks09

 
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Posted 27 January 2010 - 06:04 AM

I hear your frustrations and I completely agree. I am constantly trying to explain myself and educate friends and family. The worst though is when they "understand and are trying" and they really are but they are just still soooo far off. Then you feel badly because you want them to know you appreciate their effort but they just aren't getting it.
I think that's the hardest part. People who don't understand just don't understand or never will try/care. But those who love you and want to try but just don't get it...then you offend them when you try to offer suggestions. I feel that those people get frustrated too. I live with my sister so you know this is not a gluten free environment, but she says she tries. She keeps her food "in my cabinet. I'm not contaminating you". Yet we share countertops. She'll pour her cereal right next to mine. She'll eat from my containers but "use a clean spoon". Our definitions of clean differ in that hers has no germs, mine has no gluten.
But she does try by keeping her stuff contained so how can I continue to press the issue?
My mom went out and bought allllll new cooking stuff for the last time I was home. She tries so hard but my Dad doesn't get it. He loves me but he doesn't get it. It's his generation. "Jan the kid will be fine". "We don't need to run a sterile operation here". Mom made a whole roast and thank god there were 2 in the tray. He went to cut the first, put the knife down on the counter top and went back at it. We caught him in the act and my mom lost it (mostly because everything took longer than she expected and she was so upset I might not be able to eat). I ended up trying to smooth out the situation instead of being upset myself. The 2nd one was still clean and we just didn't let him cut unsupervised! He wasn't pleased but he was trying, "I washed my hands what do you people want from me!"
C'est la vie I guess.
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Big Z
Asthma as a child, dental problems for life (which was attributed to inhalers), anxious stomach ache/symptom sufferer
2008 - non-diagnosed celiac. MD refused to test but symptom free since GFD.
2009 - discovered annatto intolerance

#44 jackay

 
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Posted 27 January 2010 - 01:14 PM

Tired of hearing about spouses and parents that don't believe /support the Celiac diagnosis or treatment. People will shave their heads in support for friends or family having chemotherapy but giving up beer and pizza etc is a great inconvience for relatives of those with Celiacs. Celiac Disease is a disease of inconveince. People will complain being gluten free is too expensive but won't give up $50 a week in cigarettes or alcohol or weekly movie nights,sports tickets.... Even for their children. Its sad. Most people can afford junk food,daily coffee out but simple foods like rice, veggies chicken are too expensive? Do what we did cut out the extras on cable,save $25 a month by getting rid of caller ID,call-waiting ... Just the cable downgrade and phone extras cut our bills all most $100. Trade in the luxury car,take a couple years without a vacation away.Get back to basics. Imagine taking time to cook instead of microwaving or take out. Actually make time to prepare dinner and eat it together not an original idea but often forgotten. Whether its the person diagnosed or people in thier lives Celiacs Disease is also one of excuses. When a child's health is not valued above everything else that is inexcuseable.


Glutenfreewarrior,
We are on a very limited income and do feel the financial strain of eating gluten free and taking the necessary supplements for me to to regain my health. Just wanted to let you know that I live a very simple life and pretty much stick to the basics.

I do not smoke or drink, go to weekly movies, buy sports tickets, eat junk food, go out for coffee, have a cell phone or drive a luxury car. We have basic cable that costs around $13 a month. I shop for my clothes as thrift stores and even watch for sales there. We may have to cut out our anual vacation which means we may not see our grandkids this year. They live far away and cannot afford to come home either.

Just wanted to clue you in that just the basics are a financial struggle for some of us.
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#45 kareng

 
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Posted 28 January 2010 - 08:43 AM

Some MIL, especially the mom of a son, can be hard to get along with. If you didn't have Celiac then it would be something else. Sometimes we just have to limit our exposure (& sometimes our childrens) to these negative & hurtful people. Sometimes I've found that being proactive or on the offense, as my teenage son says, is the best approach. I suggest something first before the "difficult one" makes plans. Or we do somthing else "to make it easier on him/her". Good luck.
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Once again, we come to the Holiday Season, a deeply religious time that each of us observes, in his own way, by going to the mall of his choice. - Dave Barry
 
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