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ryebaby0

Member Since 17 Jan 2004
Offline Last Active Apr 29 2013 10:41 AM
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#742043 24Y Male And Under Weight Bmi 16 What To Eat?

Posted by ryebaby0 on 26 October 2011 - 02:06 PM

My son has the same struggle -- he's 5'11" and weighs 126 soaking wet. And he has braces right now, which doesn't help. Our advice:

1. take a multivitamin with zinc
2. his daily diet looks like this: milkshake (ice cream, whole milk, cream, sometimes chocolate syrup or jam), 2 or 3 scrambled eggs (with butter) OR a donut OR yogurt. He's not a morning person, so that's a lot for him. Lunch at school (he's a senior)is leftovers, or an UDI's bagel with peanut butter, hershey bars, yogurt, homemade choc chip cookies (tell your mom to search for "Chewy Gluten Free" from Food network. Best. cookies. evah.), cheese squares, graham crackers (sometimes we cover them in chocolate). Dinner is a protein, veggies, rice or potatos smothered in olive oil or butter. He always eats something(s) between dinner and bedtime. I cook all his food with butter.

Favorite foods: cheese, peanut butter, olive oil, whole milk, avocados (he eats 'em plain), hershey bars, M&Ms, blueberry pancakes (he eats them cold. King Arthur gluten-free Mix is what we use), Tostitos, tater tots, hot dogs, klondike bars, pudding...

His nutritionist said not to worry too much about WHAT the calories come from at this point, just try to get at least 500-600 at every meal and 500 at every mini-meal. It's a lot of work to eat that much! You might also try google-ing high performance athletes diets -- they have a similar problem, although for different reasons. As a relatively young man, you just burn so much calories its hard to keep up! Think of it as a contest, a goal --- some of the food isn't your favorite, but it will get you healthier. Good luck!
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#740017 Pity Party/ College Search

Posted by ryebaby0 on 19 October 2011 - 02:59 PM

There's a post on collegeconfidential.com about celiac and college that has turned up Vassar (has a cafeteria called Peace of Mind, for allergic/celiac students) Boston U (with many gluten-free options and the plans for a gluten-free dining area underway) and UMichigan (or maybe Michigan State, I get them confused) which has an extensive gluten-free program. That .pdf:

http://www.campusdis...tenFreePlan.pdf

I will try and add the CC link when I figure out how!!


http://talk.collegec...ng-options.html

(I think that worked :)
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#730265 Pity Party/ College Search

Posted by ryebaby0 on 14 September 2011 - 06:21 AM

celiac IS considered a disability by the ADA. Go to the disability office of said school and talk to them first, if you have a problem (once enrolled), go to them. That is what they are there for, to assist those with diabilities.

Would you not have to have a 504 plan for a person with food allergies? Would you not have to report that as well "just in case"?



I am not here to belabor the point, but for the edification of anyone else who will have to do this:

IF a school is providing gluten free food --- any amount of it, any kind of it, even if they say "you can have a salad every meal for four years" or even if they say "we label all our food clearly" and the labels serve to tell you there's nothing safe to eat ---- if a school is doing ANY of that, the disabilities office sends me to food service, who shows me what they are "doing" and that is that. I have been told TWICE via that route that if I find that inadequate, my child should go somewhere else. Or stay home. Yes, they suggested he commute as a solution to their unwillingness to treat celiacs like people who might not want to have the same !@#$%@ food every lunch for four+ years.

I am aware ADA includes celiacs. So are the universities. I am venting (okay,now I'm ranting!) about how much effort it takes to get them past "letter of the law" and into "how can we help you feel at home/not starve"
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#727387 Pity Party/ College Search

Posted by ryebaby0 on 02 September 2011 - 02:04 PM

I think it depends on the school. My DD went to Northeastern and her enterance essay was about her joy of finding out she could still have a Snickers bar on the diet. We had to do no paperwork at all and they were very helpful. She had a room of her own and her own kitchen and the only hassle we had was getting a refund on the meal plan.
You may want to contact the disability office in each of his chosen schools and find out what the procedure would be. It might be easier than you think and if it isn't then you could cross it off the list.



The difficulty I've had so far at least, is that schools who have made "accomodations" by having any sort of gluten free food do not, as a result of that gluten-free food, consider celiacs eligible for any other accomodation. You don't need a kitchen if we are feeding you in the cafeteria kind of thing. I've also gotten several "well, we'd need to see whether he is accepted before we discuss it" answers. But yes, usually we talk to disability and food service. Or both.
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#727319 Pity Party/ College Search

Posted by ryebaby0 on 02 September 2011 - 06:05 AM

Do a lot of schools insist on dorm living the first year?


I think many of them do, but getting an exception based on food issues can sometimes be done. Some of the schools would prefer you do that and get them off the hook. It has been tiresome to find out all the combinations of strategies at various schools, but maybe he'll just apply where he's interested, we'll see if he gets in , and make accepting based on further research about actually living at these places.

apartments for incoming freshmen is hard. I know here, apartment contracts for next year (2012-13) are being signed NOW through November, long before any potential freshman could be contemplating an apartment alternative.
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#727303 Pity Party/ College Search

Posted by ryebaby0 on 02 September 2011 - 05:10 AM

Who do you talk to when you you ask about food arrangements at each college?



I start with admissions, asking who to go to. Typically, I've already looked over the food service info on the website, including any ADA requirements or special diet forms. (If they don't have those things, you already know you're in uncharted territory). I exchange emails with a food service director, and then try to get referred to an actual dining hall manager (the difference in what a director says, and what the manager does, is stunning. so far, managers rule, and are much more helpful). At Syracuse, they also gave me the email of a tour guide who is also a celiac student so he could ask her questions. When we visit, I try to make an appointment with someone in food service or at least make sure we see the dining hall(s) but that is surprisingly difficult to do at some places. My son (reasonably) asked that we not be the family asking gluten-free questions at some overall admissions meeting. At Ithaca, he was referred to a student group that helps guide the special diet kitchen planning/meals. We have not visited schools that are patently resistant to being helpful. (And there are many) I have gotten emails from admissions and from food service saying everything from "we have it covered" to "we are clueless so what would you want". Those of you who have done college searching with sons know that the more mom does, the less we like any given school, so most of this is done on the dl while he just surveys the school as a whole. (Don't say it -- of course he knows how to advocate for himself, this isn't a lost opportunity to tilt at the windmill of gluten-free dining)
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#727291 Pity Party/ College Search

Posted by ryebaby0 on 02 September 2011 - 04:12 AM

fight like hell to make them allow him to shop and cook safely (on campus or off) for himself. Out of curiosity... why are these the only schools you are considering? There are several great schools in my hometown (Portland, OR) where students don't have to live on campus and they have some of the best access in the country to all sorts of gluten-free options.


His academic interests/career path is very specific, we are not millionaires, we have another child in college. Apartments here in my college town run about $2000K/month; he could get 3 roommates and pare that down but that adds "find roommates" to the mix. @kareneng, I am struggling with your tone of I am just not trying hard enough. Many schools flatly refuse microwaves or frig, or if they have them, they are too small to be practical (again, he's lived in a dorm already like that) OR if they had them, there's no source of food. We have considered/looked at many, many more schools than this. He has other medical issues that make all of us uneasy with him being on a campus without topdrawer medical care available (either on or off campus) and quite frankly, I kinda internally resent a world that says to fly him across the country just so he can eat properly, not because east coast schools CANT do it, because they WONT do it. And yes, if I sue them, I can MAKE them do it. Maybe. Again, I know all that. I am just saying it surely seems unfair (and don't anyone tell me life isn't fair. we are keenly, exquisitely, totally, aware of that)
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#727181 Pity Party/ College Search

Posted by ryebaby0 on 01 September 2011 - 04:20 PM

Oh thank you ;) It is not unexpected, it just is irritating/depressing/frustrating and sucks a lot of the excitement out of the college search. And as for gorgeous dorm kitchens, he would never eat or cook in a common kitchen shared by 60-100 other students. The level of cc boggles the mind. My whole point here is that we can't expand the search, and the schools, for the most part, are blindly resistant to what they seem to feel is a big imposition. Like living gluten-free has been a walk in the park for HIM. With so many people with food issues, I just was so shocked that most schools are still using giant serving lines and are not voluntarily making accomodations (hello? don't know what's in your food? realllly?) just to attract students. Yeesh. I'm just yeesh-y today !
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#727053 Pity Party/ College Search

Posted by ryebaby0 on 01 September 2011 - 09:26 AM

Okay, so I know all that. I get that if I go through 14 offices and 16 people and fill out 32 forms, half of which will be lost, discarded, or ignored, he can be assured that when he goes to eat, there will be something that meets the legal definition of a meal. It's not like we are new to the whole concept. Since we live in a college town, the Big U's response is to have him live at home. Because that's satisfying. I just am So Tired of the world acting like they are doing me a favor with their miserable, substandard, inadequate "services". Most schools do not have efficiency apartments, and if we were to take oncampus housing, we'd be required to have a meal contract -- essentially paying a small fortune to go to the campus facilities, and find out there is nothing to eat. He could have a micro-microwave and a teeeny 'frig in a town with no markets -- so where is he getting the food? He went to camp at this school, we did all the paperwork, met with food service, met with the staff, filled out paperwork to get him allowed to have food in his room --- and he lost 7 pounds in one week. They fed him one 8" pizza for lunch, and yogurt for breakfast. I drove in every day to bring his dinner. I can't do that for college.

Sorry to rant. We've tried the "we can do this" attitude, but really, some of this can't be altered or changed by paperwork. We all know that in the end, someone is using the wrong utensil, the sub is contaminating the serving line, etc.... Okay, okay, I'm done!
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#727033 Pity Party/ College Search

Posted by ryebaby0 on 01 September 2011 - 08:36 AM

Ok. I am grateful we are even at this point. I am. But I am here to whine about The College Search from a food-issue point of view, and don't anybody tell me it will all be okay and I shouldn't be whiny. :)

Big University #1 says they feed lots of celiacs, and he'll be fine. Except there are only 6 choices of gluten-free foods. Total. For four years. When I asked if they thought that was reasonable, they told me that if I didn't think it was reasonable, maybe another school would be a better fit.They also have a menu that keys to the major allergens, but not gluten. And the items that are okay are only served in giant lines. He wants to go here.

Arts School #2 says they don't allow any cooking in rooms, for any reason, for anyone. If they made an exception, everyone would want a microwave. No kitchenettes in the dorm. If I dont like that, I am free to "secure a private apartment in the city" on my own. There is no policy about eating in their only cafeteria and they do not check the food contents nor would they. He liked this school.


Private School #3 says there's no gluten in their food. They don't use additives. Oh wait, that gluten? Oh, they can't be responsible for knowing what's in the food that arrives from the service. He can have a microwave in his room, though. But my son didn't love this school anyway.


Private School #4 has an allergy-free kitchen in addition to the mainstream one, where students who have registered can have their food made to order for each meal. Gluten free items are tagged and in a separate serving line. There is a allergy-free convenience store aisle at the student commons' store. My son hates this school in every other way.

There are bigger problems, I KNOW. But as I used to cry in the cookie aisle, or when it was "make a pretzel log house" in 4th grade, it is hard to think here is a talented, academic student who has to rule out schools because they won't feed him. He is dangerously thin as it is -- so there's no room for error here, or a low-calorie salad bar diet. Yes, I know it can be done. Yes, I know. But it makes me sad that schools are so "well, we couldn't possibly accomodate him".

End of whineathon. Getting off the couch :)
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#683633 Why Can't She Have It In Moderation?

Posted by ryebaby0 on 15 March 2011 - 04:11 AM

Same here Ravenwoodglass. Sounds to me like Mr JustforJen is in denial and doesn't want to give up his gluten so he's hoping she doesn't have it or can cheat. shaking head. oh the games we play in our minds.



(Well, that's not a very nice welcome-to-the-board..I think most people here have gone through relief/horror/denial/grief/coping/happiness cycles in their health journey. Everyone likes to be sure before they embark)

My son gradually became desperately ill and diagnosed as a result -- probably had been celiac for 6-7 years. Looking back, we realize the signs we missed, or attributed to other things. My husband was tested as a result of my son's hospitalization; he had no serious symptoms BUT both his grandparents died of colon cancer. He feels much, much, stronger, healthier, and well on a gluten free diet. The point being that there are no "typical" celiac symptoms, as with other autoimmune diseases there's just this pile of "possible" symptoms and your mileage may vary.

Don't panic, JustForJen. You can do this -- both of you. I am also the not-celiac spouse and I know the search for certainty can be consuming.
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#653347 Celiacs And Relationships

Posted by ryebaby0 on 14 November 2010 - 10:38 AM

I completely agree with the other comments. We've been married 26 yrs, husband/son celiac for 6. While I am as supportive as can be, it does sometimes hit me that we will never have the life we expected. People who say "oh, but you can bring your food, etc., " are missing the point. My DH gave me a Xmas gift last year of a 3-day trip with my Mom/niece to a treasured destination. I felt really guilty about going without him, but he persisted. "You go" he said "without worrying about my food, about the restaurant, about the hotplate or microwave. You go, and don't cook once. It's okay, I understand this is hard for you too". Spouses need to grieve, need to vent, need to feel like they are part of the diagnosis too.

You are always tired. We get that. Understand that when you say that to her, she may be hearing "I will always be tired, and too tired to do anything you want to do. Ever again. And you are a bad, bad person for thinking what you'd LIKE to do is more important than my health". How can she top your health? She can't -- so you have to extend yourself to her, even in a small way. After the elation and relief of a diagnosis, the joy wears off and the work of creating your new life begins --- it won't happen on it's own.
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#633963 What Is Your Favorite gluten-free Cookbook For Cooking For A Family With Youn...

Posted by ryebaby0 on 23 August 2010 - 08:19 AM

We're 8 years gluten free and this is what we use (apart from mainstream cookbooks -- big Rachael Ray fans here!)

Gluten Free Kitchen by Roben Ryberg (basic stuff but without the endless lists of funky ingredients or yet another gluten free flour blend)

Incredible Edible Gluten Free Food for Kids Sheri Sanderson

Gluten-free, Sugar-free cooking by Susan O'Brien (has some really inventive and yummy ideas not found elsewhere)

Gluten-Free Quick and Easy by Carol Fenster (I wore out my first copy, and bought two more -- one to use, and one for when my son moves away)

I started photocopying frequently-used recipes for a 3-ring binder. This way, I don't have to sort through a bunch of books trying to find a certain recipe (can never remember who wrote it!) and ones from Food Network, Living Without, etc. are all a standard size and in one place.
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#204522 Definitive Artificial Flavor Info?

Posted by ryebaby0 on 18 September 2006 - 05:02 PM

There you are! :) My husband has added his two cents: couldn't barley malt be added as an artificial or natural flavor? And my thought on THAT was --- isn't malt always listed as it's own ingredient? And I know there's a Kraft label I read in the past month that had some blanket term followed by "(barley malt) " as if to answer the question of "well, what's in that?"
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#86031 Christmas Food Gifts

Posted by ryebaby0 on 21 December 2005 - 07:20 AM

He came home last night and found them anyway, and decided to give them as a gift to our pharmacist (our son has some complicated medication issues and they have been great) when he went to pick up meds today. As far as goodies, we are rolling in gluten-free cookies right now! I mastered gingerbread men, peanut butter blossoms, and pecan balls so far, and sent brownies, carmel corn and almond bark to work with him. The only thing we haven't managed is shoo-fly pie :) So there's lots to eat, but none of the gifts are wrapped!

thanks
joanna
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