This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc. Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful?The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients)Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients)Gluten-Free Alcoholic BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity
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)
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
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.
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
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
Rafferty's in North Conway: http://www.raffspub.com/ which is not really near Storyland at all, but well worth the trip. It's like a regular restaurant, only with it's own gluten free menu. With actual choices. We have family in Rye and always drive the whole stinkin' way up to Conway just to eat lunch there!
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.
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!!)
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.
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 )
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.
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
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...
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?!
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!
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!