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Talking To University Department


Googles

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Googles Community Regular

HI,

I went by the department office today of my university to try and explain about my food restrictions. They seemed to (in my opinion) blow it off as if it were someone deciding to be vegetarian (not trying to offend the vegetarians out there.) They just asked me to send an email with a list of what I could eat. I asked if I could contact the place providing the food to talk with them about it, but she seemed to think that was unnecessary. I really don't want to get glutened right before classes start. How do I expain it in a way they will understand (they requested I just send an email about it with a list of what I could eat.) I will ask again to be provided with who they are ordering food from so I can talk to them directly, but how do I get the department to understand the importance? If they wont provide the name of the restaurant then I feel like I can't trust the food as I don't know how they will keep from ccing. Any advice is welcomed. Thanks.


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YoloGx Rookie

I am a little confused by your missive--is this just a meeting at a restaurant? If so, I highly suggest bringing your own food and drink. If that isn't possible, eat beforehand and just say you aren't hungry or pretend to eat but don't.

If this is going to be how you are supposed to eat all the time, you definitely need to find some alternative--like investing in a small fridge and cooking set up for yourself. In my opinion, the likelihood that the restaurant will consistently comply without mishap, though conceivably possible, is not high...

Googles Community Regular

Sorry to be unclear,

There will be a restaurant that will cater the food to the university. I was talking with the graduate secretary who was setting the orientation up to try and get the name of where they are getting the food.

JillianLindsay Enthusiast

They most certainly need to give you the name of the food suppliers so that you can contact them directly. Be firm and insist! If the graduate secretary won't help you, ask to speak to her supervisor or go over her head for help because her ignorance cannot lead to you getting sick.

Good luck!!

ravenwoodglass Mentor

Celiac is covered under the ADA. Legally they have to either comply with your request or let you opt out of the meal plan.

tarnalberry Community Regular

if it is just a one time thing (you seem to be saying it's an orientation dinner for students?), then bring your own food or eat before. if they are requiring to to sign up to a meal plan that will provide all of your food, then the ADA applies.

Googles Community Regular

This time it is a one time thing of an orientation dinner, however, from when I visited it sounds like they do a lot of meals together and so I thought it would be best to let them know about my dietary restrictions as early as possible. Also it gives me practice in what should be a supportive environment talking about it since I was just diagnosed two months ago. I sent an email and am now waiting for a response. I tried to convey the severity and complexity that comes with celiac so the secretary wont just blow it off. I will follow up in a couple of days is I haven't heard back.


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jjc Contributor

My daughter is dealing with this issue tonight - after only one day at school as a new college freshman. They told her their french fry fryer was dedicated, but she still got really sick and at this time they are taking her to the hospital because she can't stand the pain.

They would NOT let us opt out of the food plan because they said "we can feed her," although she told me she inadvertently met someone with celiac today that DID get out of the food plan, and has an apartment where she can cook all of her meals. That girl's parents probably brought up the ADA and persisted. I didn't push the issue, because we trusted the dining services guy, but now look where it's gotten her. She's probably going to miss some mandatory stuff this weekend. :angry:

Googles Community Regular

You should totally get her out of the meal plan! Keep going up the ladder until you get what you need. Not that this is an okay thing to happen, but now you have proof that they can not deal with her dietary needs. I hope she is feelinig better soon. And just know that from my experience in college, there is nothing that is absolutly mandatory unless they are taking attendance. And for most things there are too many people for that to happen. Also try seeing if getting a note from her diagnosing doctor helps. They will take a doctor's note as worth more than your word (sadly) Good luck.

My daughter is dealing with this issue tonight - after only one day at school as a new college freshman. They told her their french fry fryer was dedicated, but she still got really sick and at this time they are taking her to the hospital because she can't stand the pain.

They would NOT let us opt out of the food plan because they said "we can feed her," although she told me she inadvertently met someone with celiac today that DID get out of the food plan, and has an apartment where she can cook all of her meals. That girl's parents probably brought up the ADA and persisted. I didn't push the issue, because we trusted the dining services guy, but now look where it's gotten her. She's probably going to miss some mandatory stuff this weekend. :angry:

jjc Contributor

Well that's just the thing - in the spring we did send the college her medical information,with gluten clearly listed under the allergies, along with her dietician's letter and even her Enterolab test results. It's not that they think she doesn't have it, it's that they think they can take care of her. I feel so bad for her today. Because they took her by ambulance (the only way to get her to the hospital), the whole dorm probably thinks she went for other reasons. And the doctor at the hospital only wanted to talk about giving her a pelvic exam, etc., and didn't seem to want to listen to any talk about a food intolerance.

The school won't give us any other names of celiac students to network with, because of privacy, but I've approached them to contact those kids first and see if they would be willing to talk with each other. A whole group of celiac kids might be her lifeline at mealtime!

Just venting at the system... <_<

kbtoyssni Contributor

Poor kid. What a tough way to start her college experience. Good luck getting her out of the meal plan. Sounds like they aren't going to be able to safely feed her.

JillianLindsay Enthusiast

Another young lady went through a very similar experience and was successful in being exempted from the meal plan. Her school newspaper even did a story about her :) Here is the thread from that discussion: https://www.celiac.com/gluten-free/index.ph...=discrimination

Mtndog Collaborator
This time it is a one time thing of an orientation dinner, however, from when I visited it sounds like they do a lot of meals together and so I thought it would be best to let them know about my dietary restrictions as early as possible. Also it gives me practice in what should be a supportive environment talking about it since I was just diagnosed two months ago. I sent an email and am now waiting for a response. I tried to convey the severity and complexity that comes with celiac so the secretary wont just blow it off. I will follow up in a couple of days is I haven't heard back.

If the secretary doesn't help you out definitely go to the head of your program. As a former grad student, I know that there often shraed gatherings and while they are nice, I was rarely able to eat at them unless I brought my own (I usually brought my own with enough to share).

JJC- I'm so sorry about your daughter getting so ill.......you may have to DEMAND that she be exempt. I'm sure they mean well, but if this already happened her FIRST weekend there it doesn't look very optimistic. It's too bad. I know they have a lot of students to serve, but a LOT of students have allergies and intolerances too!

Googles Community Regular

So I talked to the director of the graduate program this morning but it does not look hopeful. The director was like, 'we are ordering a big order of pizza and I don't know what is going to be able to happen. I don't know how the restaurant will be able to accommodate you or if they would be willing to with a bulk order. I don't know if we would be able to talk to the restaurant.' I am so mad! Maybe my madness isn't realistic, but I'm mad. I understand that the adviser does not know much about Celiac disease, but it made me angry. Why should I have to bring my own food when everyone else gets to eat all the food provided? Along with the usual costs of being a student I have to pay the extra costs of gluten free food and then can't take advantage of the "fringe benefits" of being a student (for which I pay through tuition) such as meals provided during functions. Why in the world do they have to order pizza? Pizza was one of my favorite foods. :angry:

YoloGx Rookie
So I talked to the director of the graduate program this morning but it does not look hopeful. The director was like, 'we are ordering a big order of pizza and I don't know what is going to be able to happen. I don't know how the restaurant will be able to accommodate you or if they would be willing to with a bulk order. I don't know if we would be able to talk to the restaurant.' I am so mad! Maybe my madness isn't realistic, but I'm mad. I understand that the adviser does not know much about Celiac disease, but it made me angry. Why should I have to bring my own food when everyone else gets to eat all the food provided? Along with the usual costs of being a student I have to pay the extra costs of gluten free food and then can't take advantage of the "fringe benefits" of being a student (for which I pay through tuition) such as meals provided during functions. Why in the world do they have to order pizza? Pizza was one of my favorite foods. :angry:

I understand your anger. It looks like the university has a big learning curve to make on this issue. If the university is unwilling or unable to accommodate you then you should get some kind of financial break I would think.

Due to this being about what we eat the social implications and feelings of being left out can feel like a huge hurdle. However it is just food. If you bring your own most people won't even notice; and if they do -- if you want to you can talk about it to help others become more aware -- or just tell them its doctors orders, special diet--period.

Other people have health issues too, many of which are a lot more difficult. As far as talking about it, more and more people are finding they are gluten intolerant. So doing some politicking and educating around this at a university and maybe even forming a club or something or writing articles to the school newspaper wouldn't be a bad idea as a long term project--and also as a way to get back so to speak.

Meanwhile, if you can still handle eating grains, tomatoes and cheese, you can make your own pizza and bring it. They have good easy to make crust packages out there. And then you just add your own topping...

Bea

Googles Community Regular

I am fine with talking about it with other people, really it is the financial aspect of it that pisses me off. Its not like they are going to give me a break on paying. Its not like the university is doing anything to help me with my other financial complications. It would be nice if they would help with this.

I understand your anger. It looks like the university has a big learning curve to make on this issue. If the university is unwilling or unable to accommodate you then you should get some kind of financial break I would think.

Due to this being about what we eat the social implications and feelings of being left out can feel like a huge hurdle. However it is just food. If you bring your own most people won't even notice; and if they do -- if you want to you can talk about it to help others become more aware -- or just tell them its doctors orders, special diet--period.

Other people have health issues too, many of which are a lot more difficult. As far as talking about it, more and more people are finding they are gluten intolerant. So doing some politicking and educating around this at a university and maybe even forming a club or something or writing articles to the school newspaper wouldn't be a bad idea as a long term project--and also as a way to get back so to speak.

Meanwhile, if you can still handle eating grains, tomatoes and cheese, you can make your own pizza and bring it. They have good easy to make crust packages out there. And then you just add your own topping...

Bea

heathen Apprentice

I deal with a similar situation at my university as well. I pay a substantial amount in class dues that pays for stuff i can't have, and while the powers-that-be try to make concessions for me as they can, i'm only one person among several non-celiac students. personally, i've decided to let it go and bring my own food. i have bigger things to worry about.

YoloGx Rookie

My point is that if it really bothers you doing a bit of politicking is your best bet for eventually changing the university's awareness--and eventually altering their financial actions to benefit you and other university students with celiac and gluten intolerance.

Googles Community Regular

I am talking to people about it. I have contact the disability office. I let everyone know during orientation today. I've talked with the graduate secretary and the program director. I am talking to people.

But for me it is a financial issue. I am a graduate student and don't at this point know how I am going to afford all of my current semester, much less my next semester. I am counting pennies. Since they consider meals provided at dept functions and such when considering the expected cost of living and that dictates how much money in loans I can get, it is a significant financial issue. Plus the cost of gluten free food being more expensive it puts me in a sever financial bind. When I was applying for this program and accepted I didn't even know I had this disease. There was no way for me to know things would become so financially unstable. I expected to be able to survive on peanut butter, Ramen, and wheat spaghetti, for getting through grad school. Not the best diet but I would have survived. Now everything is different, and I would expect them to help accommodate me since I am paying for everyone else to be able to eat, and don't know where my food is going to be coming from.

I am getting a job but right now the job market isn't that great and I hope to start a min wage job soon. But all that money has to go to rent. (Another thing the university lied about-Yes I am mad at the university for a number of misrepresentations.)

tarnalberry Community Regular
I expected to be able to survive on peanut butter, Ramen, and wheat spaghetti, for getting through grad school. Not the best diet but I would have survived. Now everything is different, and I would expect them to help accommodate me since I am paying for everyone else to be able to eat, and don't know where my food is going to be coming from.

Now, you live on rice, beans, and eggs. Oh, and still peanut butter. :P

A gluten free diet does not have to be more expensive, but it may take more creative cooking.

Googles Community Regular
Now, you live on rice, beans, and eggs. Oh, and still peanut butter. :P

A gluten free diet does not have to be more expensive, but it may take more creative cooking.

The only problem is that I've never ever been able to get beans down. Taste, texture, I don't know. Never been able to do it.

ravenwoodglass Mentor
I am talking to people about it. I have contact the disability office. I let everyone know during orientation today. I've talked with the graduate secretary and the program director. I am talking to people.

But for me it is a financial issue. I am a graduate student and don't at this point know how I am going to afford all of my current semester, much less my next semester. I am counting pennies. Since they consider meals provided at dept functions and such when considering the expected cost of living and that dictates how much money in loans I can get, it is a significant financial issue. Plus the cost of gluten free food being more expensive it puts me in a sever financial bind. When I was applying for this program and accepted I didn't even know I had this disease. There was no way for me to know things would become so financially unstable. I expected to be able to survive on peanut butter, Ramen, and wheat spaghetti, for getting through grad school. Not the best diet but I would have survived. Now everything is different, and I would expect them to help accommodate me since I am paying for everyone else to be able to eat, and don't know where my food is going to be coming from.

I am getting a job but right now the job market isn't that great and I hope to start a min wage job soon. But all that money has to go to rent. (Another thing the university lied about-Yes I am mad at the university for a number of misrepresentations.)

Have you ever tried rice noodles, available in the 'oriental foods' section of many markets? I eat Thai Kitchen rice noodles all the time and they are only pennies more than regualr pasta. My Wegmans carries both the angel hair variety and a thicker one like linguine. I throw them into chicken broth along with a handful of peas or corn from the freezer and also will do a stir fry with fresh veggies and butter and then toss. They also are good with pasta sauce mixed with a bit of ground beef. I am also on a limited income and can stretch one pound of ground beef for three or four meals and a chicken breast baked will last me for at least 2. If you have a rice cooker that is a good thing to work with also. I use either white or wild rice in the rice section and then put whatever veggies or leftover meats in the steamer part that I have on hand. There is always some rice left over to stir fry the next day. I am not much of a bean eater myself but have found that garbanzo beans are quite tolerable. I put a half a can in one meal and then use the rest to make hummus. You can also see if there are any Angel Food ministries in your area. You spend $30 dollars and get $60 worth of food. They do have gluten free boxes available also. I discovered them after someone mentioned them here so a board search or general search should bring them up.

Googles Community Regular
Have you ever tried rice noodles, available in the 'oriental foods' section of many markets? I eat Thai Kitchen rice noodles all the time and they are only pennies more than regualr pasta. My Wegmans carries both the angel hair variety and a thicker one like linguine. I throw them into chicken broth along with a handful of peas or corn from the freezer and also will do a stir fry with fresh veggies and butter and then toss. They also are good with pasta sauce mixed with a bit of ground beef. I am also on a limited income and can stretch one pound of ground beef for three or four meals and a chicken breast baked will last me for at least 2. If you have a rice cooker that is a good thing to work with also. I use either white or wild rice in the rice section and then put whatever veggies or leftover meats in the steamer part that I have on hand. There is always some rice left over to stir fry the next day. I am not much of a bean eater myself but have found that garbanzo beans are quite tolerable. I put a half a can in one meal and then use the rest to make hummus. You can also see if there are any Angel Food ministries in your area. You spend $30 dollars and get $60 worth of food. They do have gluten free boxes available also. I discovered them after someone mentioned them here so a board search or general search should bring them up.

Thanks for the advice. I will look into it.

Googles Community Regular

I want to thank everyone for their advice on how to deal with my issues. I didn't mean to snap at anyone, though I'm sure I did. While it is not an excuse, I'm really stressed out and really angry. And not just angry about how the university is dealing with the celiac. I have been diagnosed for two months and during that time I have also had to deal with many major life changes. So I'm sorry that I got angry with people's suggestions. I just feel so stressed out and for me money has always been a sensitive issue. I wanted to make sure you knew that I'm not angry at all of you who responded, I'm just really angry in general. At first I was able to accept all this as another complication that I would have to deal with, but right now I seem to have entered and area where I'm just pissed at life and everything seems like it is too much to deal with. Plus I don't as of yet know anyone where I live so I spend all my time alone since other students are not yet here.

psawyer Proficient
I want to thank everyone for their advice on how to deal with my issues. I didn't mean to snap at anyone, though I'm sure I did. While it is not an excuse, I'm really stressed out and really angry. And not just angry about how the university is dealing with the celiac. I have been diagnosed for two months and during that time I have also had to deal with many major life changes. So I'm sorry that I got angry with people's suggestions. I just feel so stressed out and for me money has always been a sensitive issue. I wanted to make sure you knew that I'm not angry at all of you who responded, I'm just really angry in general. At first I was able to accept all this as another complication that I would have to deal with, but right now I seem to have entered and area where I'm just pissed at life and everything seems like it is too much to deal with. Plus I don't as of yet know anyone where I live so I spend all my time alone since other students are not yet here.

You can always come here for our support. That's what we are about here.

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      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
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      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
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    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
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