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ryebaby0

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  1. My son is finishing up his freshman year, living on campus and eating in the dining halls, at Penn State UP. He has a frig and microwave in his room, for starters. I was really skeptical at first (and we had visited Ithaca, and it is impressive) but he has had a great year. All the dining halls have a gluten free station that is stocked with pasta, chicken, etc. and desserts, sides....there is also a nutrition intern who codes the main menu for gluten-free options and that is emailed to gluten-free students (who self-identify, there's no need for documentation). There's not a lot in the main menu that's gluten-free, but the station has been more than adequate for him. His dining hall of choice knows him on sight (this is a big deal on a big campus) and is very cooperative about tweaking things to suit him. The commons convenience store, for example, at his dorm started stocking yogurt and KIND bars for him when he kept buying those. There's a tasting session each semester for new products, and the dh manager contacts him regularly to see how he's doing. It's not perfect (we're local, so I bring him a stash of gluten-free homemades to supplement) but it's very good. You don't have to order ahead, either (this used to be the case apparently, but that was changed when the students kept complaining it wasn't practical)


  2. Your school really is required by law to offer you food. Did you pay for a contract, or are you living off campus? It's not okay to have salad forever. My son is a freshman, in his room he has: peanut butter,gluten-free pretzels, minute rice, raisins, yogurt, almonds, nachos, pasta (we freeze cooked pasta in single-serve microwaveable bowls), sauce (for the pasta), cheese, UDIs bagels (but those are expensive)

    Anyway. Go talk to food service at your school. Go. Now. I have visions of you starving :)


  3. This is similar to my son's course of diagnosis -- first dx with juvenile rheumatoid arthritis, then celiac. The gluten free diet did not improve his health, but people told us to be patient and wait. It was a dietician who insisted he be hospitalized and there he was dx additionally with something called autoimmune enteropathy. Basically, an misguided attack on his gi tract, launched by his immune system in error. We got a second opinion at Johns Hopkins. AE is treated with the same drugs they use for transplant patients -- there is no cure. Another thought is that he may need zinc supplements. Unchecked celiac will deplete zinc, and you need that to absorb nutrients and cells need it to grow.

    Anyway. Get yourselves to a doctor as soon as you can. Get a blood test and check his basic nutrient uptake. Start a food diary, because they will be sure you are just missing the gluten in his diet. Post what he eats here, and maybe someone will see something. But make an appointment at any major medical teaching hospital.


  4. My son was dx almost 10 years ago, and has been under the care of the same group (and basically the same doctor) at Children's Pittsburgh all that time. He has an additional dx that necessitates immunosuppressive meds and monitoring. Anyway, son wants to stop driving 6.5 hrs round trip for the checkups twice a year (it will be particularly hard to schedule now that he is in college) and I get that eventually we'll need to find an adult GI, anyway.

    Asked the peds GI and he really only wanted to recommend another Pgh doc, which hardly solves the problems. So how do I find another doctor? I've looked at the major practices in my area, and none have anyone who specifically is interested in celiac. We are not far from Hershey, but he was seen there at the very beginning and we are profoundly not-impressed with their care. Can you interview doctors? Schedule a visit to see what they know? The peds gi is a momma's security blanket and I'm hanging onnnnnnnnn :)


  5. The scope is scarier for you than her. The biggest thing is for you to be calm. Completely calm. At 2, she's not gonna understand a lot and she might not like all these strangers bugging her. Bring things to distract her (I used to bring Pokemon cards and we'd get engrossed in unwrapping them and seeing what we got). Stay calm. The scope itself is pretty unremarkable and routine from a medical point of view. They'll have you sign a bunch of scary stuff but try to not worry. If this is her first sedation, she may come out of it yelling --- that's a weird thing kids do the first time, also, sometimes they throw up. The doctors/nurses will be expecting that sort of thing. Remember that hospital time is very slowwwwwwwww so just make an adventure of it. Distract, distract, distract.

    She'll be groggy and sleepy. That's a good thing. Don't let her have anything to eat or drink prior to the scope within whatever guidelines they give you -- usually 12 hours for us. Don't try to bend the rules. She's not going to remember very much, if anything, about the day.

    Good luck, and be well. My son is now almost 19 and hasn't had a scope in years. He's a happy, healthy, well-adjusted and well-liked person who went to lots of parties, lots of trips, and was never once seriously teased about his celiac status. Your daughter will be fine, and so will you. ((hugs)) to you both


  6. Huh. I came to the travel thread just to post about Hershey Park, bc my son was there on a class trip this week and had a great experience. Ate at Minetown and had hotdogs and cookies, which came wrapped up so he didn't worry about contamination (he did not eat the hotdog in a bun, although they offered). He brought food with him in his backpack and no one questioned it; he also did not have to wear any sort of band (which I agree is a dismal idea). The manager brought him his food and made sure it was to his liking. I'm hoping you got a weird untrained person, but usually they are more helpful.


  7. My son is about to attend Penn State, which (for a huge school) is doing pretty well accomodating celiac students but isn't as impressive as Ithaca College. IC has a dedicated kitchenette at the cafeteria which will prepare whatever you want; also has a gluten-free section in the convenience store and a gluten-free student advisory committee. PSU has interns that will code a month of menus and email it to you --- but most of the food isn't safe or gluten-free. They do have a list of stuff to choose from just for gluten-free students, though, and the individual dining hall managers are very accomodating. We also looked at Syracuse, which is trying but I wasn't impressed. I hear Boston College and Michigan (University of , not M State) are highly regarded.

    There's a thread here about this, and how to ask questions -- try searching for it?Pity Party/ College Search Time to sit on the whiny couch --it's in the parents/children forum but had a lot of convo about the issues. (I started it when I was highly irritated with the schools we were looking at. I have since calmed down!!)


  8. He's almost 18. He's going to be making his own decisions before you know it. This is a chance for him to practice.

    Actually, he is 18 already. And already making decisions and managing his healthcare, with varied results and competency. I appreciate more than I can say that if we dropped dead tomorrow, he needs to be able to care for himself, by himself.

    I'd wrap my head around the fact that this is something he wants to do and is capable of figuring out. Then I'd tell him that, and make sitting down with you or another informed, experienced person to think about potential problems and their solutions a requirement of going. I would require him to write up his plan and submit it to me for review before signing off on it.

    That's how he went on the beach trip last year, doing exactly that. And the problem here is that there are many potential problems that are outside his control or mine to plan or sign off. (You do know that you sound pretty darn judgemental, right? We don't keep him locked in a closet :))

    His solutions don't have to be perfect. They have to account for potentials that could kill him or make him extremely ill. Life is full of risk.

    The potentials to kill him or make him extremely ill are present in the sunshine, and the reliability of a young man to wear spf bazillion sunscreen and stay out of the sunshine in Arizona when there is no one present but a bunch of friends and miles of desert. So I am simply weighing whether that is a risk worth taking, or not. I agree that a ship is not meant to stay at harbor.

    In the context of a youth group with some adults and access to transportation I think it's a good way to give him a chance to learn those lessons.

    Some adults who already are skeptical about the need for any "special treatment", and we don't know much about transportation, or where they will be or what they will be doing, or access to food. They admit that they will deal with that when they get there. Believe me, if this were a "we're staying HERE, working HERE, food provided HERE by THIS MEANS" I would be ready to let him go and swallow my worry. But those are answers that will not be provided until he is actually on site. We know where he is staying, but not where the day will be spent. "Hopefully" having access to whole foods is just not good enough, and asking him to live on food packed in his luggage and palatable in 105 weather -- because there's no guarantee there's any cooking facility, since they don't know where they'll be most of the day -- makes me unhappy. So I struggle along :)


  9. It's asinine to plan a trip out here that time of year, if the intent is to work outside (unless you're arriving acclimated from another desert). If they are working inside, that's another story (although I'd want to know if the place where they are working has a/c - if it's on a res it may not).

    I've seen people of all ages and health ranges get heat stroke doing minimal work outside that time of year....it's bad. It even happens to locals who just aren't thinking...


  10. The group itself is not the problem -- he's belonged to this youth group for 2 years, his friends are all part of it and our home church does not have a youth group. So I'm fine there, but the whole "pick up something to eat" part bugs me. I'm often overly cautious so I'm just checking! Seriously, how often do we go into a store and there's little to eat? For my kid with braces. Who may, or may not, have anyplace to cook. And if he does, we've no way to know if the utensils, etc.. are useable.

    Even typing this, I'm thinking "no way..no way"

    Ohyes to the mom as bad guy! Haven't we all been there?!


  11. My son wants to travel with a small group from a church, across the country, the week of his high school graduation. They will fly out, spend 3 or 4 days in service projects in the Southwest, and then fly home, arriving the day before his graduation. He would pay for the trip.

    I want to be fair, but I was exasperated. Their flight arrives around 9, after they pick up baggage and leave the Phoenix airport, they "will go grocery shopping" but they aren't sure where. The service work will be done -- probably-- at a native american reservation. They aren't sure. They are sleeping at a church. It will be in the 100's and obviously extremely sunny; my son takes meds that require him to limit his sun exposure to avoid serious complications. They don't know when the return flight leaves or when it gets in. He has to have a deposit in 2 weeks.

    Apart from the vagueness, there are the 3 adults going. One of them has been very vocal in the past about students needing "unnecessary special treatment" and I can easily imagine her as one of those "oh, you can eat this" kind of people. But that's just my impression, founded in little fact and a lot of radar. This is not our church, it is the church that sponsors a great youth group that he attends with his girlfriend (who is also going).

    So. What would you do? My husband is absolutely against it. I should add that the day AFTER graduation, the entire 100+ youth group goes every year to the beach for a week, for a retreat. He expects to attend that as well; I think at the very least it's an either/or proposition but I'm interested in others' input!


  12. 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!


  13. 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.campusdish.com/NR/rdonlyres/8BAF3EC7-5A82-4132-843F-10840EE98110/89640/GlutenFreePlan.pdf

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

    http://talk.collegeconfidential.com/parents-forum/1227603-daughter-celiac-disease-needs-gluten-free-dining-options.html

    (I think that worked :)


  14. Ask the teacher what they will be cooking -- and I would have him excused for days there is flour open. It's ridiculously hard to clean up! This is what we did for home ec -- he cooked gluten-free alternatives when it didn't involve flour, and there was only one day when it did (the rest of the days were smoothies, quesadillas, fruit platters, and soup). He was also excused from taste testing :)


  15. Oh goodness, she needs an official diagnosis via blood test at least, or her school will not help her. And you won't be able to make them. gluten-free is viewed as a fad diet right now! It must be scary to know she's not eating right :( I wish I had a solution for you. Is there a meal she likes that she can just stick to? Can she have a rice steamer in her room? Rice +olive oil + canned chicken or tuna would at least get calories in her . ... You may have to go, and take her to her cafeteria manager. They are the most likely to be of use, if anyone can be. "I'm gluten-free but I don't like this stuff" coupled with a list of things she will eat might be a place to start.


  16. 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"


  17. 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.


  18. 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.


  19. 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)


  20. 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)


  21. 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 !