<p>If you can get yourself to a major medical center you may be able to apply for free care and move forward with the diagnostic evaulation you need</p>
<p>You will likely need repeat lab tests and an endoscopy (looking into your small intestine via the esophagus and stomach) This is a shorter and less costly test than a colonoscopy.</p>
<p>Medicaid? Chip program? With that income, your family should qualify for health insurance through one of the government programs...</p>
<p>Isn't there inexpensive insurance through your school? You might want to get on an insurance plan before the diagnosis, to avoid the problem of having a preexisting condition.</p>
<p>Regarding colonoscpies: It is one procedure that I think should be done at home, if at all possible, as opposed to at school. My kid has had two while in college and did them at home although lots of other tests were done at school. In particular, people with GI disorders can have a harder time with the cleansing process and immediate bathroom accessibility is an issue. If your bathroom is down the hall, it may not be a good set-up. The cleansing process is one time when a bathroom in your own home counts for a lot. Also, since you can't eat the day before, it's easier to get the broth, jellos and so forth in a home situation than at a dorm. In addition, you have to be picked up and driven home by someone. At a lot of schools, no one has a car or they are in class. An endosopy is easy to have done while in school although you still need the ride home.</p>
<p>Colonoscopies should be done while at home. It's a two day deal, not counting the previous 3-4 days on diet (avoiding certain kinds of foods) The first day is the liquid diet day; it is important to be close to a bathroom, as mimk sugests. The second day is the day of the procedure, where someone has to accompany you to and from the clinic. The procedure itself is painless.</p>
<p>Colonoscopies are considered check-ups and are not covered by schools' health insurance plans. But with your family situation, you should be able to get one through a government program.</p>
<p>I know two guys who had colonoscopies while at school and did fine. Both had private bathrooms in their dorm rooms. Probably better to do it at home, but if that's not feasible then it's certainly possible to do it at school, especially if you have your own bathroom.</p>
<p>A colonoscopy is not done to diagnose celiac disease. An upper endoscopy is.
The only prep required is to have nothing to eat or drink after midnight.</p>
<p>If the large intestine needs to be evaluated, then a colonoscopy might be indicated, but for a small bowel biopsy an endoscopy is done---short acting sedation is given and once that takes effect, the whole procedure takes about 10-20 minutes. Recovery from the sedation may take an hour--then you go home</p>
<p>SilverClover -- There is also a doctor (I think affiliated with Johns Hopkins) who has been doing a study for a number of years on Celiac. My D2 was tested for the genetic marker for Celiac for free a number of years ago. She was negative, but it was a very simple process. I don't remember the doctor's name, but I'm sure you could track it down on google. The test may also be more widely available now. My 10 yo best friend was dxd at age 3 and has 2 sibs with it.</p>
<p>The genetic test is a blood test and it is called "Celiagene". This is widely available now, so really could be done anywhere. One caution, the test is quite expensive and some insurance carriers will not cover the test.</p>
<p>This test looks for the genetic profile for celiac a negative genetic profile lets you know that you will never get celiac disease, while a positive genetic profile only means you have the genetics to get the disease but you still may never develop the disease.</p>
<p>I know this is an old thread, but I am currently struggling to find ways to help D2, who is suffering from plantar fasciitis and fibromyalgia. She is in her second year at an art institute about 7 hours away and is under great stress due to a flare-up of the plantar fasciitis. Her schedule includes 4 days of all-day studio classes on cement floor, plus academic classes. She lives off-campus in a northern city where snow begins in October. She has been riding a bike to classes, but that will need to stop soon when the weather sets in. She has spoken to the academic affairs office, which told her there would be stools available in all of her studio classrooms-- but the stools are often taken by other students. Her disability is invisible and she is loathe to make someone surrender a chair for her. She struggles walking even short distances (i.e., inside a building). </p>
<p>Her school does not have a disabilities office. I don’t have a lot of experience advocating, and am not sure what to do to help her. I would appreciate advice, both on how to advocate for her, as well as any suggestions on how to manage her problem, if there are other parents of student suffering from plantar fasciitis and/or fibromyalgia.</p>
<p>For those reading this revived thread, just want to mention that celiac testing/biopsy are not accurate if you have been substantially off gluten for a period of time. You need to go back on gluten for a minimum of 6 months, to get an accurate test/biopsy, and in our daughter’s case, we decided that certainly was not worth it!</p>
<p>Also, colleges should be providing alternatives, such as gluten-free pasta or breads, for kids with celiac or even intolerance. Meet with the head of food services, not the people in the kitchen. Some kids are allowed off a meal plan, and microwave gluten-free meals, generally rice dishes. This would be discussed with an administrator: we have never failed to get an offer to waive the required meal plan fee, but it has worked better to have the college provide gluten-free food in the plan.</p>
<p>Our daughter has several chronic conditions and I would also like to say to everyone that the first year is the hardest. I wrote a bitter post three years ago, but the last two years have been wonderful. It is really helpful to find a person who works for the college, to help, and that person is not always in the disabilities office.</p>
<p>Separation happens, but more slowly. I brought my daughter home one night, with a funny feeling that something bad was going to happen. It did. If I hadn’t brought her home, she would have died in the dorm room. It is hard to separate under circumstances that we are all dealing with, but we have to do it. The next night, I drove her back and left her there, and I just left her again last week. There is no other choice.</p>
<p>For the recent poster, your daughter should have a stool, period. That should be an easy accommodation to obtain. It would be best if your daughter could speak with the teacher, and, if that fails, an administrative person. She should have her own stool, perhaps the same one every time. It could be put in a closet or something, for her to take out. They might have to be creative. She will have to get over her embarrassment. There is certainly no shame in having plantar fascitis. I understand it is uncomfortable, but there are ways that a stool can be saved for her with her privacy still relatively intact.</p>
<p>^I agree with compmom. I have several invisible disabilities and I know it’s hard. As a 21 year old, it is terrifying to ask someone to give up their seat on the bus for me, because it looks like I am a healthy young adult who should be able to stand. But I am not. It took me a while but I had to get used to saying, “I’m terribly sorry, but I have a medical condition and there is nothing that I can do, I need to sit or I will fall.” People sometimes are a little grumbly about it, but too bad. This is one of lifes many lessons. You need to be able to stand up for yourself and get yourself what you need. Nobody is going to do it for you. Once she’s done it a few times her skin will thicken and typically it won’t be scary anymore.</p>
<p>On what you’ve said about intolerances, compmom, I discovered that my school has started identifying gluten-free foods this year on the menus and they appear to be offering a gluten free option at every meal, but unfortunately not dairy-free. I had to order chinese food yesterday because it was mexican food day and everything was either slathered in cheese or spicy, neither of which would have done me any favors. I have been in a wave of digestive discomfort since sometime in July now, just constant nausea and pain. There isn’t much anybody can do for me, I left a message with the school’s dietician to see if she can help keep me fed, and I am trying to arrange so the disabilities office can help to convince my professors to be flexible about their absence policies because I can foresee another semester of having to consider withdrawing ahead of me, but so far no progress.</p>
<p>My son is a 16 yr old high school senior. He will turn 17 a few days after he graduates. My concern is that he has Celiac disease, IBD and is currently being tested for a rheumatological illness. He wants to attend the same university that my daughter attends. She has told me that there were students previously that were promised gluten free meals but ended up in the hospital because of contamination. This worries me for my son. He can not live off campus until he has 30 hours. Also, I am concerned with his chronic illnesses how he will even make it through college. He is an excellent student and has a very good gpa. However, he has missed so much school this year in health flares. </p>
<p>Any suggestions by anyone? I’m just at a loss as to know what to do for him.
Thanks in advance!</p>
<p>Hi,</p>
<p>I hope that some people are still monitoring this thread, because I really need some advice.</p>
<p>My son, a senior at a top LAC, was diagnosed about a month ago with hemochromatosis. This is a genetic disease where the body doesn’t process iron correctly. It builds up and can cause all sorts of horrible complications, including liver failure and even death if untreated.</p>
<p>Our son has always handled illness and pain very badly, particularly when blood is involved. The standard treatment is to have blood drawn every week until the iron levels are back within normal range. After that, you have to keep monitoring the iron levels and go back to the weekly blood drawings from time to time if the levels start to rise. You could not come up with a disease that would cause him more distress. In addition, he has to drive across the city during rush hour to get the treatment, so it kills pretty much a whole day each week.</p>
<p>On top of this, he is drawing near the end of his senior year and is trying to wrap up his senior thesis. He has high expectations for himself and can’t seem to give himself permission to let himself rest. I am pretty sure that he could finish up on time and graduate when expected, but he doesn’t think that the work he turns in will be good enough. He feels that his life is ruined, and can’t seem to come to grips with the unfairness of it all.</p>
<p>All of this is awful enough, but the other part of the problem is that he tends to alienate everyone who tries to help him. He calls us in tears- which I totally understand- and then says that he is not getting the support he needs from anyone- including us. I suspect that his friends and roommates, while basically sympathetic, are also tired of providing support to someone who is this needy and almost never grateful.</p>
<p>Has anyone dealt with a situation like this? My husband and I are very worried, not just about the disease but also that he will drive himself over the edge.</p>
<p>It sounds like your son has a lot on his plate–there’s never a good time to be diagnosed with a chronic disease, but spring semester senior year of college is a tough one. It also sounds like he has multiple issues to deal with–the illness and treatment itself and not feeling like he’s doing a good enough job with his school work. Has he always felt that his school work wasn’t his best, or only now with this new diagnosis at this worst of all possible times?</p>
<p>In terms of his treatment, is it possible to find someplace closer to school so that he doesn’t have to travel so far? Or perhaps to change the time of his appointment so he doesn’t have to travel during rush hour? Can student health do it? Would it be easier to take a taxi rather than drive himself–less stressful perhaps?</p>
<p>I’m sure he’s not the first person who has had issues with blood. Are the staff aware that he has these issues? Are there relaxation techniques or ways to make it less stressful (eyes closed, listening to music, etc.)</p>
<p>It sounds like it would be good for him to have someone to talk to, someone who could help him sort through all of these issues; especially since they are impacting his academic work. A counselor at school perhaps? Maybe his academic advisor should know what’s happening. College guys might not be the most understanding and they probably can’t really relate to what your son is going through. (Of course I say this knowing full well that my son would never ever go to a counselor or speak with his advisor about his medical issues or even share “feelings” with his suitemates.)</p>
<p>My son is also a college senior and was diagnosed with a chronic disease in high school. I remember the medical staff saying that he has an advantage as he was still living at home and had the benefit of a couple of years of parental support before heading out on his own. College kids receiving his diagnosis found it a lot harder to deal with.</p>
<p>Good luck in a very tough situation.</p>