<p>At some colleges, accepted students join the college's Facebook group as soon as they decide to say yes to the college. Some of them find prospective roommates there and then submit requests to room with each other when they turn in their housing requests.</p>
<p>A friend of my daughter's found a very compatible roommate this way.</p>
<p>I wonder whether two kids with diabetes might enjoy rooming together; they could easily seek each other out on Facebook. They wouldn't have to go through the hassle of explaining very basic aspects of their disease to a roommate, and they would know what problems to watch out for in each other. </p>
<p>By the way, at least by the College Board official policy, you need an accommodation to test or eat (even sugar tablets) during the SAT or AP's (though if given at the high school, it may be less of an issue because the proctors are likely to know them). As it turned out, the proctor (this was at the local university, where they had a test center) never seemed to know about it and wasn't particularly interested or nice, so my kid actually never used it, didn't test, didn't eat anything (one proctor refused to let my kid to run to the bathroom before the test started...even though breaks for that were part of the accommodation; you can't rely on having a knowledgable or helpful proctor).</p>
<p>D had a pre ACT test (sophomore) yesterday at her school. I told her to carry some life savers in her pocket in case. She has definitely had concentration issues in the past when her blood sugar is low. </p>
<p>(Good advice on notifying the proctor in the future, particularly during the SAT's, etc. Thanks. I didn't think that they may restrict food and water during testing, but they probably do. ) D is currently the only one in her school (about 750 students) that has diabetes.</p>
<p>Great idea about the roommate Marian. We'll have to look in to that when the time comes.</p>
<p>I contacted the College Board before the SAT just to make sure it was ok to test and take sugar tablets and to my surprise they said, no, because it might disrupt the exam for other students...ridiculous, in my opinion, since testing is so discrete and popping a sugar tablet or life saver is so unobtrusive...so we had to get the endocrinologist to write a letter to the College Board...the accommodation allowed for testing and treating for lows, and extra breaks as needed, though how that would have been calculated against the clock was never explained, as the tests were in the same room as everyone else (including for the testing that they thought might be disruptive(!)). The confusion over this was why, in the event, my kid didn't test for the 3 hours and more that the testing took.
As to roommates, I don't think my kid would really want to use diabetes as a factor; he went to a camp (not a diabetes camp) where one of the other kids had diabetes and they barely discussed it...my kid thinks of himself as just a kid, not a kid with diabetes, I guess; it has been a much "bigger deal" for me in some ways.</p>
<p>My son is a freshman in college (after a gap year) and has been using a pump for 2 years. It has revolutionized his life. He had excellent control and success giving himself injections, but I did notice that he didn't eat at times because he didn't want to give himself another shot! Now he eats whenever he wants and just has to push a few buttons! And, it's so much easier eating out. He doesn't have to carry a ton of supplies everywhere he goes, and doesn't have to draw attention to himself while giving himself an injection in the restaurant.</p>
<p>For sports, he checks his blood sugar, makes any necessary adjustments, unhooks the pump for up to an hour; checks his blood sugar again, adjusts as necessary, and then unhooks for another hour. The doctor said he shouldn't be unhooked for more than 2 hours.</p>
<p>College was a big adjustment, as he found that he was eating less. He had to make several adjustments to his basal rate until he got his blood sugar up; he was having too many lows.</p>
<p>Of course, I do worry a lot. But he's 19 and will have to live with his diabetes for the rest of his life, and hopefully will continue to be as successful as he has been.</p>
<p>The only person (teenage girl) we personally know who had a pump was a neighbor of ours. She was fine in high school with a pump, but contracted an infection at the infusion site when she was in college. I'd be worrying about that too. Is that common?</p>
<p>It is an issue; there is bacteria on skin, so you have to be careful to sterilize the site. You should also never suck on a wound (e.g., after testing your finger) for the same reason. But in 9 years, it has not been a big problem. The insertion needle used is not much bigger (though it is longer) than the usual syringe; the spot where the catheter sits is also covered by the set. Sorry if this is TMI for some out there.</p>
<p>My son hasn't had an infection yet; but he is starting to feel some pain when inserting the infusion set. Also, he has twice woken up in the morning and found that his infusion set had disconnected overnight; luckily without bad results.</p>
<p>I have a son who was diagnosed with with Crohn's disease at age 15 and is now a senior in college. He doesn't have the immediate restroom needs that others have with this disease, but we did want him to choose a school within ~6 hours of home so we could get him home if an emergency arose. Fortunately, we have never had to do that.</p>
<p>My husband has diabetes, diagnosed also at age 15. He has had an insulin pump for about 8 year and will NEVER go back to shots. Ironically, he was quite resistant to the idea of a pump for so long. One of the huge pluses for the pump is the good blood sugar control that one has while sleeping. Good control=fewer health issues. Since the time you spend sleeping is about 1/3 of your life, this means you gain good blood sugar control for 1/3 of your life just by using an insulin pump.</p>
<p>Miss America from a few years ago had diabetes and had a pump. We met her at a fundraiser where she was wearing a slinky black dress. She was wearing her pump, but you could not tell at all.</p>
<p>Just wondering, but have any of you had problems getting accommodation for your children?</p>
<p>I stayed nearby my college for an internship this summer and just didn't go home 1000 miles away. I was diagnosed with dairy allergies (thankfully not life threatening though) but my symptoms were getting worse despite being dairy free and on medication. So, I went to the allergist and after a lot of inconclusive tests, we determined that my family has a RIDICULOUS history of misdiagnosed celiac disease and that on top of that, I might have lupus or some other yet undiagnosed autoimmune or neuro problem.</p>
<p>So I had to deal with that all on my own and coming to college, I didn't really know what to do. Since I am, by the college's standards, undiagnosed (I have not had any conclusive testing done for celiac because it's so invasive but we're confident that that's the problem), they have been completely unhelpful. The school dietitian told me I only get one "out"- I can be gluten free and dairy free, but I cannot be vegan- despite the fact that hormones in meat and egg also make me sick. I literally eat dry salad every day. I also have been unable to get accommodation for the chronic fatigue that goes along with my condition and the fact that I have numerous doctors appointments that invariably take place during class (and since I don't have a car, I'm dependent on public transportation which cuts even more into class time).</p>
<p>My mom keeps threatening to call the school, but I'm trying to explore all my avenues first. I'm on the dining committee for the Student Union to demand that the top 10 allergens are labeled on ALL foods (since I've been glutened so many times when cafeteria workers didn't realize that, say, soy sauce has wheat in it or that flour was tossed into the soup to thicken it) and that there be more gluten-free options since I am almost constantly sick because I'd starve if I stayed COMPLETELY gluten free. I don't know what more I can do though. :\ What would you tell your kids to do?</p>
<p>Do you love your school? If not, I would suggest transferring to a school where you can control what you eat. It's a legitimate concern. At Barnard there are dorm assignments for which you can totally opt out of the meal plan. Since kids are on Broadway there are many inexpensive places to eat at which you could choose your own food. It works out to be cheaper, too.
And I'm sure there are many schools like that. There probably IS a limit to what a large concern, like company that provided meal plan, can do. Not right, but a fact of life.</p>
<p>Does your school have a separate "department" for special services (disabilities)? At my D's college it's called Access Services and they have been supportive and instrumental with accommodations relating to my D's medical condition. This is the blurb from the department:</p>
<p>We welcome the full participation of individuals with disabilities in all aspects of campus life. The Access Services office provides support and reasonable accommodations for eligible students, employees, and guests with disabilities. Individuals who think they may need accommodations because of a learning, physical, or psychological disability are encouraged to contact the Coordinator of Access Services as early as possible to discuss their concerns.
Access Services strives to respond to each person's concerns individually. </p>
<p>Reasonable accommodations are provided, when necessary, to minimize the impact of a disability in the campus environment as much as possible, and to ensure equal access to our programs, services, activities, and employment opportunities. They include the elimination of physical barriers to campus buildings and facilities whenever possible, as well as appropriate academic and workplace adjustments. Current relevant documentation from a qualified professional is required to support a request for accommodations. We will protect the confidentiality of any information shared.</p>
<p>I don't understand why you haven't gotten a diagnosis -- including for celiac disease, if you tested positive. Then you can demand an accommodation. I would not depend on a dietician or nutritionist who is unhelpful -- you should be talking to doctors too. At the school, you need to find out who to talk to about accommodations and what supporting documentation you need. Perhaps your mother could help you with this, as she seems to be willing to do. My understanding is that people with celiac disease cannot eat any gluten. There is a lot of information about it on the Internet, including at my favorite diabetes site (there is a high percentage of celiac in people with diabetes): childrenwithdiabetes.com.</p>
<p>Can you keep a small fridge and microwave in your room? Or a toaster oven or something where you can prepare some foods for yourself? Another option is to move off campus. My daughter did this and her situation has improved a lot. Her school had very limited dining room hours and food choices and then the only thing available late at night was stuff that was really bad for her. Now she can prepare things that don't make her sick.</p>
<p>My advice: Get a formal diagnosis. This isn't the only time when you'll find yourself wanting one. In my understanding, Celiac disease is diagnosed by testing a small biopsy during a colonoscopy (or an upper endoscopy? I'm not exactly positive where they biopsy.). A colonoscopy sounds unpleasant, and you'll be out of commission for a day, assuming you get anesthesia. You'll eventually want a formal diagnosis, probably, or your next doctor will want one. If you get a diagnosis now as opposed to waiting until later, you'll get accommodations from the college, which seems to be your immediate goal. I think that's worth a day and a minimally invasive procedure.</p>
<p>Diagnosis of celiac disease is a 2 step process:
Initial screening of celiac antibodies--Tissue transglutaminase antibody, antiendomysial antibody. A serum IgA should be done in conjunction with these tests as these antibodies are IgA antibodies and those who are IgA deficient but have celiac disease might get a false negative on these screens.</p>
<p>If either of these antibodies is +, then you really should get a biospy done of the small intestine to confirm the diagnosis. This is the gold standard for diagnosis of celiac disease. A+ biospyfor celiac would reveal atrophy of the small intestinal villi--these are damaged by gluten</p>
<p>In addition to helping you with accomodations, this will really confirm whether or not you truly need a life long gluten free diet. Celiac disease is also associated with other conditions such as thyroid disease and diabetes.
Failure to treat celiac disease can increase one's risk of certain types of lymphoma, so you really do want to be certain of what you are dealing with</p>
<p>It is also totally possible to be completely gluten free and eat in college dining halls I have a good number of patients that are in college and do just fine. They really need to work with food service to avoid cross contamination of foods but is it truly doable. After diagnosis we continue to monitor our patients with the blood tests for the celiac antibodies and most of our college students acheive negative antibody tests (meaning no detectable gluten in their diet)</p>
<p>If it is a colonoscopy (I cross posted with someone here who apparently knows that it is not...), let me reassure you that you will not feel anything (they usually dope you up to the point of unconsciousness) and after a short recovery you are totally up and about -- it is not surgery! The only bad part is the preparation, which is simply annoying, not painful.<br>
The main thing is to find out what you need to know: do you have celiac disease? It can lead to greater health problems if untreated. You can't assume that you have allergies to wheat or gluten or anything else unless you have it checked out by a physician.</p>
<p>The biggest problem with getting a diagnosis is that we just lost our health insurance and with a family income for 4 of under $15,000 a year, there isn't the money to get me officially tested. That has thrown a hurdle in for getting documentation since my previous doctor was kind of a jerk who knew nothing about celiac and told me it would be fine to go ahead and eat gluten. O.O </p>
<p>Also due to this, I don't have money to supplement my food. I pay $3,000 a year for the meal plan and my college job (which is basically the only source of spending money I get) only pays about $30 a week after taxes- but was the only thing I could find. :\ I do have a fridge and there are gluten free products in the on campus convenience store, but I've almost used up all the "points" there (changing meal plan next semester.. but the time I realized what a problem it was, they wouldn't let me change) and not to mention it's just junk food- the "mealish" things all have gluten. This is a problem because I'm trying to lose about 80 pounds that I gained due to misdiagnosis of both celiac and PCOS- both of which severely curb what I can and cannot eat.</p>
<p>It's also too late to transfer. I'm already a sophomore and about to be done with my first major and both of my minors at the end of the year, then I'm going abroad my entire junior year (which is another worry altogether but I'll cross that bridge when I come to it). Moving off campus isn't an option either since I'm already here and I don't have a car.</p>
<p>I know I cannot expect the school to stand on it's hands for me, but if I am FORCED to pay $3000 a year for food that I can't even eat, there is a problem. I know people on the celiac disease forum I used to go to said that it's just a fact of life to waste hundreds or thousands of dollars on a meal plan- but since I don't have money to get food elsewhere, I just can't do that.</p>
<p>It's also not as if I'm the only person either. I know several other people with celiac disease and at least 10 who have gluten sensitivities and more who are allergic to wheat... but most of them just suck it up and get sick because it's not worth dealing with all the avenues you have to go through. I'm sure there are more than just who I know and who has told me as well.</p>