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I Need To Vent
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13 posts in this topic

Some days, don't you think we should all call our newspapers and radio stations and yell "I HAVE CELIAC AND I CAN'T EAT WHEAT!!" I've been reading the various threads here today and ya know, people just don't get it do they!!?? Non-supportive spouses, or co-workers or even best friends. Basically, they just don't understand any part of it. I have given this forum to several of my friends and told them to read all about it. I remember one of the threads I read, someone said that for us eating gluten is like ingesting rat poison, it can be that bad for some people. Can we make more public awareness about this issue, should we start our home-town support groups and different things so that people know we are out here! I get so tired of people calling my diet, the "special diet." It is not special, it is a healthy diet! One of my co-workers says to people when she introduces me "no wheat - no milk - no fun!" Thanks alot, huh!! Anyway, I just needed to vent and I thank you for listening (reading!!)

Bernadette ;)

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i know just what you mean--at christmas time we had a meeting/party and we all brought goodies--my boss, cindy, wanted me to try her fudge and i of course, asked her what was in it--she says, choc chips and i said, ok--what kind--she says, i dont know, just chips--i said--ok, then i cant try it and she was angry--in time she started asking me what i can and cant have and we have discussed it over and over---today, she buys a pizza and asks me if i want a piece--they dont get it--we just have to take care of us--we cant count on others to worry about what we eat--deb

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I know........people don't realize what wheat is in and how restricted we are.....I've had people ask me if I can have many obvious gluten-containing foods: cookies, breads, cakes, etc. It's frustrating.

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Even my mom wanted to feed him pasta -- I'm like, Mom, that's a wheat product. It was, honestly, funny. People always think they know what's in baked goods, too "Oh, that's okay, there's no wheat in it. Just flour...."

But let's be fair. I had never heard of Celiac disease, ever, and I'm from a family of allergic/ill people. I never knew Rice Krispies had malt in them. I never knew artificial flavors could be derived from wheat. I didn't know casein was part of milk and therefore non-dairy, etc..... It took us 6 months just to develop a pattern of staple gluten-free items, and we live with a celiac we love! Imagine if it were just someone you worked with. Before celiac disease, did any of us cook special food, label it, and provide the ingredients list just in case someone at the Christmas party had allergies?

So smile. They aren't doing it to hurt you. Their ignorance is not a measure of their indifference, they just don't know. They don't even know that they don't know!

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Howdy folks. I also would like to remind us that we are all human and prone to mistakes, and can also be forgetful. I used to get offended until I realized that before I was diagnosed, I was never very considerate of special diets either. I realize that I am more laid back then most people as well, but I usually use humor to remind people (like jokingly accusing my Sister in law of attempted murder when she offered me a piece of cake, sure it was not the nicest thing to do, but she has yet to offer me another ;) ). All this to say, don't worry if people don't seem supportive, few people really want to carry our burdon, even as we don't always want to carry thiers.

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My favorite thing is when I am talking to my friends about my new diet and they (and yes several people have done this) ask if I can have fruits or vegatables :lol: I told my husband I so badly wanted to say "yes as long as they don't dip them in wheat juice" but instead I just smile and AGAIN explain what constitutes wheat, oats, rye or barley and move on. It is frustruating but yes, people tend to not always pay attention unless it affects them directly.

Stephanie

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sometimes my friends ask me if i want gluten food cos they want me to know they want to share and they don't want me to feel left. i appreciate it, it makes me feel normal if a bunch of people are eating pizza and i can be offered some and decline instead of someone having to make deal out of me having celiac.

one thing that really bugs me though is that some of my friends constantly ask me "oh you can have x? as i'm eating x. it makes me feel like they think i don't take my diet serious and would just randomly cheat on it! haha oh well.

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I am trying in my own small way to educate more people about celiac disease. Our local library has a display case that anyone can reserve for a month to showcase an educational topic. I reserved it for this month. Along with articles from the internet which I enlarged, I am displaying books and magazines with articles on the subject

which can be checked out. The books come from branches all over the county. I am including websites where further information can be found, such as this one.

Even if only a few people show an interest, it will be worthwhile because they will help "spread the word".

DK

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There are always going to be those self absorbed people that just don't get it or who just don't care. I know a few.

I've also had people ask me if I can eat vegetables and fruit! It's quite funny actually!

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DK, what a great idea! I used to work at a library and that is something I never would've thought of.

On the subject of people just not getting it... the most common 'ignorant' comment I get when I say my son can't eat things w/wheat barley or rye is "Oh, well I don't like those breads either! At least he can still eat white bread!" :blink:

Priscilla

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I had to laugh at Astyanax's comments because I always get comments like "Oh, can you eat that?" while I'm eating it :D ! I am very tempted to respond "NO!" when asked that just to see what they'd say next but I try to be polite and respond with "I can eat anything you can - as long as it doesn't contain wheat, rye, barley or oats". That seems to stump them and you can almost see the wheels churning while they think about it. :lol: (people have always called me a rebel anyway)

My niece recently said "good luck with your so-called diet" when I was explaining celiac disease. I'm still trying to think of response to that one.... :unsure:

Anyway, maybe we should start a whole new topic - what's the funniest/strangest/oddest comment made to you after hearing you explain celiac disease? (or something along those lines) It should give us all a laugh, don't you think?

Frankly, I'm glad all you guys are out there making me feel less like an outsider from the rest of the (normal-eating) world. I'm still learning how to adapt after spending many years with this problem but not being able to put a name to it. I accidently ran across this website and by self-diagnosis determined that I had celiac disease.

My new gastroentrologist recently had me go off eating gluten-free in order to have tests completed and I am feeling not so good right now. I guess I should feel that this is enough proof (to me at least) that I don't need to have these tests run - I really do have celiac disease. And to be honest, I'm not sure if I should be happy or sad about that.

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I'm giving an informative speech on celiac disease for my Public Speaking class on Wednesday. I am hoping that some other students who are diagnosed come forward and let our Food Services Personnel help them with the gluten-free diet. I'm also saving the speech for Food Services. I'll be delivering it at one of their conferences (I have yet to find out the date), and promise to keep everyone posted!!!

The ignorance of people when it comes to the disease, between my bouts of anger, has inspired me to teach them more about it. They may be able to help Celiacs in the future if, for instance, they were employed at a restaurant. We all know how tough it is to eat out!

Beat the Wheat (barley, oats, rye, and malt),

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Thank you all for your responses, I was just having a bad day last week. Thanks to Pastor Dave who so simply stated "everyone is human and prone to mistakes." Thanks for sharing your stories with me!

Bernadette

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    • Hi Beachgrl, It won't hurt anything to go gluten-free now, except the possibility of getting a diagnosis of celiac disease.  When i went gluten-free, it seemed like the initial changes were spread over about 6 weeks.  I had gut spasms for that time.  And other changes, all for the better.  Initial recovery from celiac damage can take up to 18 months, so it can be a slow thing.  Some people get better much faster of course, because we are all individuals and not identical. Going gluten-free for celiac disease is a lifetime commitment though, and some people have a hard time doing that without a diagnosis.  Even minor amounts of gluten can cause us to react, so it is best to eat a very simple diet of whole foods at first.  Avoid dairy and processed foods.  I hope it works out for you.  I know some people with Crohns disease eat gluten-free and find it helps them.  Gluten is a tough thing to digest for all people, but most don't have an immune reaction to it like celiacs do.  
    • Honestly, I would not trust the school to provide a gluten-free meal except for fruit, salads, veggies, etc. I sub in a school cafeteria and I swear everything is breaded or on bread. Utensils are shared. They're very clean but unless you have a very knowledgeable person in there, I just wouldn't chance it. I found a slim Jim type snack that says gluten-free on it. If you want to give me your email or FB account, I can send you some very valuable info on 504's though. They carry the student right through college. I kept a copy of what a friend wrote about her daughter being in a sorority and just how the 504 helped immensely. But, I would definitely get one and still be prepared to pack a lunch. All our meals are delivered frozen and we just hear them up. If your school actually fixes food, that's different. 
    • Oh, I would suggest providing gluten-free goodies (e.g. Candy) or even a frozen cupcake (kept in the teacher's freezer) in the event of a party.  My daughter's classmate is severely allergic to peanuts.  Her mom did that and Abby was never left out!  😊
    • Hi Nobody, Welcome to the forum!  I noticed you said you have been avoiding wheat products.  That's good, but are you avoiding rye and barley also?  Wheat, rye, and barley are the 3 grains that cause reactions in celiac patients.  About 10% also react to oats. If you haven't had the full celiac antibodies test panel, it might be worthwhile getting that done now.  The ttg is just a basic test and is generally followed up by an endoscopy or the full celiac panel. I wouldn't worry a lot about getting cancer.  That doesn't happen often. It is possible some of the other grains you might be eating are contaminated.  A group did a test on several off the shelf products a few years ago that would not normally be thought of as having gluten and found some actually did have low levels of gluten.  Things like corn meal for example.    
    • I can not help you with the the 504 plan, but I do know that I would do it.  My daughter is 15 and so far has tested negative for celiac disease, but in the event she does test positive, she will need a 504 plan to help keep her safe.  I am sure other parents will chime in.  This topic has come up repeatedly.  Until then, try a search with the forum.  Lots of people have posted with their comments and experiences.   As far as lunch is concerned, my kid has not purchased a school lunch since the 1st grade.  She says they are gross.  (Poor me!).  But, I would not trust the school to provide a gluten-free lunch.  Sure, they are required by law, but let's face it, who is working in the kitchens, ordering, etc?  I am on a University campus and have called out food service for not following gluten-free safe practices!    I would pack a lunch, at least until her health has stabilized.  The 504 plan is great for extra trips to the bathroom and hand washing.  It provides some protection in the classroom.   Keep advocating for her Mom!  You are doing a great job!  
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