12 replies to this topic

[travelthomas]

I thought it would be nice to start a topic that deals with how to channel all the anger and frustration of celiac disease.

I personally like writing letters to the Congress, celebrity TV host like Oprah, and the FDA.

Being I’ve personally had two failed relationships, I know how the frustration of this disease can effect a person’s life. Taking this frustration out on friends and family is counterproductive.

Let’s hear how this anger can become productive, with your ideas.

[plantime]

My frustration is more aimed at manufacturers that think wheat has to be in everything. I mean, come on! Campbells does not need to use wheat as a thickener!

My anger is at people with celiac disease that expect everyone else to take responsibility for them. I just want to yell at them to read the labels themselves! You don't need a doctor's note to eat gluten-free! Quit complaining about the diet!

I did send an e-mail to Oprah. I never thought about writing to my political representatives. I do call companies and talk to them about their products. I also asked a farmer about field contamination.

Instead of getting angry, we need to get motivated. I don't see anyone advertising celiac disease on tv, so we need to tell people ourselves!

[kejohe]

I agree that the best way to channel our frustration is to educate the non-celiac world. For me, since I am not in the medical profession, I have little opportunity to speak with health care pros about the disease. However, I am in another industry very important to those with celiac and thats the food service industry. So for me, I try and educate as many restaurant professionals as possible.

In our defense, Dessa, roux (a mixture of wheat flour and oil) has been used as a thickener for soups and sauces since before the Bible was written. So it's understandable that some of the larger food manufacturers, like Campbell's still use it. It also has preservation and flavor benifits that you can't get with corn starch, arrowroot, or potato starch. I'm in the same boat you are as far as trying to make sure everything is gluten-free, so I'm not saying this is any kind of excuse, but it is a reason. Add to that the sheer enormity of the cost involving a change of one of their "classic" formulas/recipes, I can see why they have yet to switch to a gluten free product.

Anyway, it's all I can do to educate my peers in the restaurant industry, and I hope what I do helps people. It certainly makes me feel better.

[jaimek]

I am so glad this topic was started. I am having a very hard time taking my frustration/anger out in the right way. I believe it is affecting my personal relationships with friends and especially my boyfriend. I get so depressed and angry that I become this person that I am not and it really upsets me. I go through periods where I am fine and then it just all bottles up inside me and I can't help but cry. I find that it is so easy when I am at home eating all of my meals but I am at the age where all of my friends are getting married and I have all the engagement parties and bridal showers to go to and I feel like it is torture. I had my first experience at a bridal shower where I called ahead and told them about celiac. They were unaware of what it was and i had to answer a lot of questions but in the end they were going to make me a plain piece of chicken. well, at the party the waitress made the biggest deal about it and was so loud about my disease. I am not one who likes that much attention and I know she was only trying to help but it was embarrassing. Then I just had an engagement party and I did not call ahead and I lost it while sitting at the table. I just started crying. I was never a cryer before and the whole thing makes me so angry. I watched all of the appetizers go by that I couldn't have and it was eating me up inside. I really don't know what to do. I feel like I am just a hassle/problem to everyone.

[travelthomas]

Possibly I’m diluting myself, but I am always looking for the positive side of things. For me celiac disease is teaching me how to separate from all the beliefs society has created about food and nutrition. Everyone seems to know that things like alcohol, and milk are bad, but we create myths to say that they are good. Like alcohol is good for the heart, and every body needs milk. Alcohol kills brain cells (and other major organs), and the only people who need milk are babies (and they need human milk).

I also take the teachings of celiac disease to other parts of my life. This helps me to step outside of the beliefs, and look at them objectively (especially my own beliefs). True that beliefs are the little gifts that help us survive in this world, but is it necessary to accept all the gifts?

celiac disease makes us step outside of the belief that wheat is a healthy food. How many other beliefs are we operating under like healthy wheat?

[whitelacegal]

I am really upset about the amount of doctors and nurses who do not understand this diease, everytime i tell them i have this they say so then you have a allergy to wheat? Its hard to explain this to people so they can really understand, i usually tell them to look it up in there medical books. being new im trying to cope with this the best i can by reading all the information i can on the diet and going on messege boards like this one to read how other people cope, i know i have a long road ahead of me!

[tarnalberry]

I was torn about whether or not to reply to this ... 'cause I'm not particularly angry about it. I'm far more "angry" about my knees being not-so-good, and the fact that I can never run as much as I'd like to.

There are so many ways around wheat. Maybe if I didn't cook and couldn't learn, I would feel more angry, but I CAN learn, so things can always get better. No one else who doesn't have the same problems we do can really understand how they affect us. My husband didn't entirely understand about my knees until his started showing the same problem. And they shouldn't understand. They can't. Just like we can't understand exactly what it means to live in their body.

Of course, I've been lucky. I haven't battled legions of disbelieving doctors (only my allergist expresses a lot of disbelief, and well... he can go deal; he's not the one treating me), and I haven't had legions of friends scoff at me. I treat it just like any other dietary restriction, and don't make a particularly large deal out of it. Maybe it's living in California, where we're so food conscious; I don't know. But some people have shellfish allergies, some people have peanut allergies, some people are strict vegetarians (for all sorts of reasons), some are on the Atkins diet, and some are gluten intolerant (me!). The level of "damage" done varies for these - but it can be MORE serious for those severely allergic to peanuts, and I won't discount the emotional pain that a truely strict vegetarian might experience finding out that he/she ate some meat. And I don't even think about if one person would suffer more or less pain from not sticking to the rules, because that line of thinking implies "one-up-man-ship", and who needs to "compete for the most pain".

I cried in the car on the way home from my orthopaedist appointment, where the doctor told me to never run again, and that I might need full knee replacements by the time I'm 50, but nothing else. (I soon found a better doctor.) I didn't cry finding out I was likely celiac, because the good outweighs the bad - it's something you can adapt to.

I see some people expressing anger that they have to adapt, that they can't be like everyone else. Well, in some manner or another (not necessarily food), everyone has to adapt to something in their lives. This is something we have to adapt to. It's just something that is. I know that I choose to follow a gluten-free diet because it's what my body needs, and it's hard to get mad for making intelligent choices. And it's hard to get mad at the ignorance of people who don't know any better. (Though it's REALLY HARD NOT to express shock when someone doesn't know that pasta is made from wheat! ;-) )

[plantime]

Kejohe, Since all of the companies come out with new soups all of the time to compete, can't they be radically different and do a gluten-free one? I "adapted" by making my own soup at home. I have "adapted" so much , that I am tired of trying. Even my poor little cat looks tired of adapting, and she only has to eat the food!(a touch of humor there, since my cat can't have gluten either!)

On a better note, the pastor at my church has a friend with celiac, so he is trying to support the best way he can. He signed me up for the fellowship committee so I can help others keep track and maybe learn about food problems. Of course, it means more work for me to do, but the more people that know about it, the easier it is for me. We just need to find ways to educate people. One-on-one works very slowly. How do we raise public awareness?

[tarnalberry]

lol... there's something to chalk up to "different perspective". I would never have thought of making homemade soup as "adapting". I did it before I was gluten-free too. But if you've lived your whole life buying soup, I could see how making it might seem like a big thing. (I thought enchilada sauce was a kinda big thing to make at home until I did it - and man is it easy!)

[plantime]

Maybe we need to learn to inject more humor into our lives! A real good laugh would sure do wonders for relieving the stress we all feel!

[granny]

(I thought enchilada sauce was a kinda big thing to make at home until I did it - and man is it easy!)

I know this isn't the place, but would you put your recipe for home-made enchilada sauce in the recipe section? We've tried to make it but just never get it quiet right.
If you happen to have a recipe for beef stew seasoning or if someone else does, I'd love to have it also. Neither my husband or myself are good at spices and have always depended on mixes. Now that we're gluten-free, we're really missing some of our favorite things, like a good stew. I've challenged myself to make a recipe from the recipe section each day and we've really enjoyed the process and the foods.
All help is appreciated. Thanks, Granny

[tarnalberry]

granny, sure - no problem