Mom Of College Student

[annacsmom]

Hi everyone. I am the mother of a newly diagnosed college student. My daughter was diagnosed three weeks before going away to college in another state. Talk about a crash course in celiac. She had been sick for many years so we were relieved and grateful to put a name to everything finally. (Although she has also had vitigo and currently has hashimoto's hypothyroidism). Anyway, she and I talk constantly since I am her reference guide for gluten free ingredients. But it is very difficult living in a dorm on campus. I've been in touch with food services, but they are pretty slow in results, although the dietician is a very nice lady. Is anybody else out there in this situation! I would love to hear from you!!! Thanks

[Carriefaith]

Maybe your daughter could talk to the cooks and explain everything. Maybe they could prepare something safe for her? Or maybe she could ask to see how the food is prepared and see if there are any cross contamination risks in the kitchen.

[GFBetsy]

There was another thread in the "Teenagers Only" section of the forum on this topic . . . and it's mostly written in by those who are currently dealing with the college issue. She might find some support there . . .

[CarlaB]

My daughter is undiagnosed, but does not eat gluten as she feels bad if she does. Her screename here is MorganB. Maybe your daughter would like to PM her and they can chat with each other. My daughter has discovered various ways to eat on the meal plan on campus and be gluten-free. She tried just eating some gluten early on, but it made her miserable.

Morgan doesn't get on celiac.com very often, but if you PM her she'll answer.

[mari-lyn]

I will see if my sister still has an article written by a Mom of a Wisconsin student and how she handled the food service. My niece has celiac disease and Type I DM and just went away to college. Will post if I can get that from her again.

[zip2play]

(Although she has also had vitigo and currently has hashimoto's hypothyroidism)

Those are not uncommon in celiac people. I have hashimoto hypo as well! There are many things that spring up from having Celiac. Hopefully everything will improve for her as she gets used to her new life!

Monica

[gymnastjlf]

Hi everyone. I am the mother of a newly diagnosed college student. My daughter was diagnosed three weeks before going away to college in another state. Talk about a crash course in celiac. She had been sick for many years so we were relieved and grateful to put a name to everything finally. (Although she has also had vitigo and currently has hashimoto's hypothyroidism). Anyway, she and I talk constantly since I am her reference guide for gluten free ingredients. But it is very difficult living in a dorm on campus. I've been in touch with food services, but they are pretty slow in results, although the dietician is a very nice lady. Is anybody else out there in this situation! I would love to hear from you!!! Thanks

Sounds very similar to my situation! Last week I received a diagnosis one week before leaving for school. I contacted dining services immediately, and it was a slow process. Because I was new to the diet as well, I couldn't even tell them what I could/couldn't eat, I had to figure that out myself before I could tell them! Since I go to a very small school, they do not have a dietician on staff to help. Thankfully though, most of the food is made from scratch each day, so I just ask the chefs when I get to the dining hall what I can/can't eat. For the most part, I ask what the ingredients are in the dishes, then I can decide if I can/can't eat it. They use McCormick's spices/seasonings, so that makes life easier. The main problems for me are that the chicken/vegetable stock the dining hall uses has gluten in it. But other than that and thickening with flour (which the chef tries to avoid on dishes that he knows I eat:-)), it's usually pretty simple!

I did, however, have to go and read ingredient labels myself when I was diagnosed, and I occassionally check things just to make sure nothing has changed.

Good luck to your daughter!

[clbevilacqua]

I know from another thread that your daughter is in Boulder and I sent you a PM (at least I think I did-I'm not all that good at this yet). I am in Boulder, too and just starting to address the issues of what happens when our daughter goes to college in a couple years. Besides us, we have several friends with kids in the 14-25 year range that are celiac. I have been doing cooking classes every once in awhile for them so they can learn how to cook gluten-free. I am going to be doing another one soon for the holidays. We will be making pumpkin bread and pies-maybe dinner rolls, too if we have time. Your daughter would be very welcome to join us! The group keeps growing with friends of friends and new people being diagnosed so it's not like she would be with a bunch of people who know each other and she doesn't.

We also always set an extra place at the dinner table for our "unknown guest". She is always welcome to fill that spot!

[Drama-Queen]

I am also a college student. I found that living in the dorms was not an easy experience. I was living in an apartment type dorm and had a very inconsiderate roommate. I had anaphlaxis once from her carelessness. I moved out into a single apartment, but then again I am a junior in college and I am accustomed to college life. Being a new student with a newly diagnosed lifetime disorder is not easy, I sympathize with you there.

I would definetely talk to the cooks and food services. The squeaky wheel gets the oil. Sometimes you have to be annoying to get your point across. Also make sure she is getting her vitamins. It is hard to keep your vitamins up if you can't eat the food. Fruit, Raw vegetables and gluten-free pre-prepared bread is also an option for her if she can't eat enough at the dining services. This of course would be in the interim, until she gets her diet established with the cooks. Do the research and find a natural foods store in her area that she can easily get to. This would provide her with gluten-free vitamins and other foods. If nothing else there is always online ordering, and the care package from home.

You could both brainstorm about what foods would be good to eat outside the dining hall so that she can stay healthy until she can eat a full meal at the dining facility.

To help support her, put together a care package, in it you can put gluten-free items for her use and maybe a list of resources in her area so that she can physically have it in her hands.

Hope this helps!

[uofmmom]

Hi everyone. I am the mother of a newly diagnosed college student. My daughter was diagnosed three weeks before going away to college in another state. Talk about a crash course in celiac. She had been sick for many years so we were relieved and grateful to put a name to everything finally. (Although she has also had vitigo and currently has hashimoto's hypothyroidism). Anyway, she and I talk constantly since I am her reference guide for gluten free ingredients. But it is very difficult living in a dorm on campus. I've been in touch with food services, but they are pretty slow in results, although the dietician is a very nice lady. Is anybody else out there in this situation! I would love to hear from you!!! Thanks

First time on blog site!My son has just moved to attend college. He has been having fatique, brainfog(as he calls it), weakness, trouble concentrating and recently found out he is anemic. I'm having a hard time getting him to understand the importance of going to a GI doctor to have a definative test for Celiac(my aunt is a celiac and both my husband and I have heavy thyroid disease in our families, including ourselves!!!) He has been working with an ENT Dr. that is testing for food allergies and they have come back positive for wheat, dairy and soy. (He had big sinus problems all summer and ended up having a septoplasy in late July)I think he is in the denial stage right now although he is making a big effort to go gluten,dairy and soy free. He fainted at the bus stop last week on his way to class!!!! He has withdrawn from classes for the semester to try and get to the bottom of his illness. We have an appointment with a GI doctor next week but he still says things like "I just don't think that's necessary". He wants to just continue working with his ENT Dr. that found his "food allergies". Don't worry, I'm insuring that he go to the GI Dr. next week, I'm going with him but...this all does sound like celiac right??

[Drama-Queen]

Say I noticed you are UofM mom. I happen to be a U of MN Twin Cities Student. Which campus is he at? Morris? Duluth? Or does U of M mean another "M" as in another state. Maybe I can be a resource for him. I would be happy to help. I am also trying to get a student group started.

First time on blog site!My son has just moved to attend college. He has been having fatique, brainfog(as he calls it), weakness, trouble concentrating and recently found out he is anemic. I'm having a hard time getting him to understand the importance of going to a GI doctor to have a definative test for Celiac(my aunt is a celiac and both my husband and I have heavy thyroid disease in our families, including ourselves!!!) He has been working with an ENT Dr. that is testing for food allergies and they have come back positive for wheat, dairy and soy. (He had big sinus problems all summer and ended up having a septoplasy in late July)I think he is in the denial stage right now although he is making a big effort to go gluten,dairy and soy free. He fainted at the bus stop last week on his way to class!!!! He has withdrawn from classes for the semester to try and get to the bottom of his illness. We have an appointment with a GI doctor next week but he still says things like "I just don't think that's necessary". He wants to just continue working with his ENT Dr. that found his "food allergies". Don't worry, I'm insuring that he go to the GI Dr. next week, I'm going with him but...this all does sound like celiac right??

[annacsmom]

I'm going with him but...this all does sound like celiac right??

Dear UofMMom,

It sure sounds like celiac to me. My daughter began her journey at four yrs. old with vitiligo, but developed very severe Hashimoto's Hypo. in middle school. We only figured out the celiac after high school. Your son's symptoms sound exactly like my daughter's main ones, although she also had various neuropathies. She, too, is very anemic. She has never had a biopsy because after being prodded and poked after all these years, she had had enough. But she did test positive for certain antibodies over the last two years. I'm sorry your son is so sick. But if he continues to be very diligent, especially about the gluten free diet, hopefully he'll fell better eventually. My daughter does not really feel all that much better yet, but she has only done it for almost two months. It is incredibly difficult being so far away from her, especially since I can't cook any meals for her, but I have totally immersed myself in becoming educated about the diet. She literally has no time to find things out right now, so I am her only source of information. Thank goodness for cell phones!! I urge you to do the same for your son. There are innumerable sources of hidden gluten, and it is such a shame if you get accidentally glutened due to ignorance. If you have any questions or just need to chat, you can pm me anytime. I hope your son is on the road to recovery.

[Drama-Queen]

Celiac disease is funny in being elusive. It sounds like celiac disease to me. I had grand-mal seizures this summer and they are sure it is related! I too get brainfog if I get glutened. It is actually considered one of the symptoms. Fatigue is a big symptom! Passing out, been there, done that. Anemia-totally, he is mal absorbing that much! Weakness, biggest symptom I have heard of. The sooner he gets diagnosed the sooner he can heal the damage.

Other symptoms to consider, significant weight loss, elevated white blood cell count, diarrhea and vomiting, anaphlaxis, pain everywhere, stiffness, pain in joints, headaches....the list goes on and on.

I hope this helps and I wish you luck in your quest for diagnosis and recovery. PM me if you have questions or want to talk about it, or get a college student's perspective on living with celiac, dh, or gluten allergy. I would be happy to coorespond with your son also if he wants to talk about symptoms and stuff.

[katrinamaria]

hello!

i am a college student right now and became gluten free about a year ago. my first piece of advice is that your daughter HAS to learn the safe & forbidden ingredients for herself. (there are tons of lists available on this site even i think). it's just not practical for her to have to call you every time and i think it would be much safer/easier for her in the long run if she became her own reference guide (not that having a mom with one too isn't helpful!)

also, definatly talk to the dietary/kitchen staff. i met with mine going in thinking i was going to have to explain everything and it turns out there are 2 other gluten-free students here (not that big of a school either!) so they already had an idea and some foods they knew how to prepare and everything. i'm not saying that it was a breeze, i have to contact them about once or twice a week to get things straight...but it's worth it and she deserves it...especially since we're paying for it!! so i definatly agree with whoever said "squeaky wheel gets the grease."

and even suggest that your daugher join this group. it has been really helpful for me. sometimes i don't know what i'd do without these guys!! everyone is very helpful and always quick with responses and info.

i hope youre daughter gets along alright at school. i know it can be pretty tough, but she'll make it! you sound like a very caring mom! good luck with everything!!! kms

[Kibbie]

I was introduced to dining cards (I have the Triumph brand) by a college student. She said she takes them with her to eat and gives them to the cooks. She's had great luck with them... and so have I (thought I only use them for eating out since I'm out of school)

[Sinenox]

I am also a college student out in California. My story is not encouraging as I ended up having to move off campus with my own kitchen but now that I've done so I'm much, much better off for it. I'm happy to answer any questions I can about the process. I found out right after I got to college so I think I'm in the same boat. The good news is that it's early enough for your daughters that they can begin to counteract some of the long-term consequences. The bad news is that they need to stay on top of this, all of the time, and college is a very bad place in which to do that. Good luck to you all.

Feel free to email me at Sinenox@gmail.com.

[Amica]

Annacsmom- I have two new perspectives for you...

I was in college when I went through inital testing for celiac. I was ready to call the school and ask to change my housing to a dorm with a kitchen because I didn't see anyway to eat gluten-free in a cafeteria that cooked mass quantities of food for so many people. I was devastated at the thought of having to stay behind when all my friends went to eat their meals. (It may sound silly, but the cafeteria is one of the hubs of a college campus!) However, when I contacted dining services they were much more helpful than I anticipated... because there were other students on campus with celiac disease!!! They did ask that I call an hour or so before going to the dining hall to let them know I was coming, but that is a fairly small inconvenience compared to having to abandon the ability to eat with peers (and not have to prepare every meal!) A link from this site reports that 1 in 133 people in the U.S. have celiac disease https://www.celiac.com/st_prod.html?p_prodi...-14107565240.0f and I have heard many similar statistics. Maybe it would be worthwhile to bring this to the schools attention? Even if your daughter attends a small school, I bet she is not the only one dealing with this on campus! Cafeterias are used to being careful about cross contamination of nuts and other foods with high allergy rates, so pointing out the rising rate of celiac disease may help get things going for those on gluten-free diets!

Also, I currently work in childcare and order food from a food service company. Although I can't speak for all food service distrubutors, I know that ours (and probably many others) have entire sections of their catologue dedicated to food allergies and intolerances. The cook for our preschool makes lunch for 60 little ones everyday. She deals with a variety of allergies and intolernces, including celiac disease. She is able to order food for all of the children from our company, and keeps the gluten-free food in a designated spot in the kitchen. It's likely that the college's food service company (if not another they could order from) could offer them a list of gluten-free products they could buy.

Good luck!