Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

College Cafeteria Eating Is More Difficult Than We Thought


carecare

Recommended Posts

carecare Enthusiast

My daughter is not diagnosed...but I wish she was. She knows gluten bothers her...and while at home was eating a gluten light diet...except for the month of August I would say she was gluten free because we became a gluten free household....as my 11 yr old son had a positive blood test for which made me start gluten-free immediately...which resulted in his symptoms going away. Her blood test was negative but that could be because at the time she was eating a gluten light diet. :(...it's difficult to get her to eat enough gluten at home because she's not a bread eater...never has been or cereal. She likes pasta and pizza but doesn't have it often because she doesn't feel good after. So anyway, when we went to orientation over the summer we thought that her options in the school cafeteria were going to be ok. The dinner's they served us then even had "gluten free" labeled on items...they even served a gluten-free dessert every evening. She's been in school 2 wks and she says it's very hard to eat gluten free. They have a tiny refrigerator in the cafeteria labeled gluten free items...but it's not something she will take advantage of because she says it's mainly breads and bakery items...things she just doesn't eat. I'm sure at this moment she's missing my cooking :(. So 2 wks of college life and her stomach is hurting every day and she feels awful. She knows it's from the food. I told her that maybe she'd need to continue to eat gluten for a few months...and then get a endoscopy. She doesn't want to do the testing...she says she knows she has to eat gluten-free. However, I know without that diagnosis she will not get the proper services from the college. I told her that maybe she'd be best not living in a dorm and getting an apartment...if she ends up getting a diagnosis I would hope she wouldn't have to live in the dorm and they'd give her an on campus apartment. She said she likes living in the dorm though. :( Well, I suppose she'll have to make some choices...feel awful or feel healthy.

Also, my 9 yr old was at grandma's today and she made him regular mac and cheese. He told me his stomach hurt after and he felt awful. He had a celiac panel done a year ago because he was having months of stomach pain. The test was negative...but the GI was going to do a endoscopy to rule out celiac. I ended up canceling the appointment because his pain went away and by the time his appointment was rolling around he was already 3 months pain free. So I figured it wasn't gluten causing it. Well, now maybe it actually was...and I'm kicking myself for not getting that endoscopy done.

My husband has been gluten-free for 2 yrs...had frequent D for 15 yrs...daily indigestion/stomach pain and other odd symptoms from time to time...all disappeared going gluten-free. Took 5 months for the D to totally disappear. When he's glutened it takes him a week or two to recover. Never diagnosed...he hates doctors.

I really want the genetic testing done I think.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



shadowicewolf Proficient

i think you need to do it as well.

As for your daughter, tell her if she wishes to stay gluten free in college she really needs a DX or else the school will do nothing for her. Even if its just an officail "you are intolerent to it" is better than where she's at now.

kbtoyssni Contributor

You could have her search around for a doctor that will diagnose her with celiac or gluten intolerance due to her reaction to eating it. I never had positive blood work, and my doctor (and the few doctors I've had since) was perfectly fine with a diagnosis based on dietary response. I'll admit, I try to find someone younger, someone who may be more up on the current celiac research and open to less traditional methods of diagnosis.

ryebaby0 Enthusiast

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.

dilettantesteph Collaborator

I suggest you find a doctor who will diagnose her based on response to diet. With recent news about gluten intolerance being a real condition this shouldn't be difficult.

sariesue Explorer

How is her cafeteria set up? Is it all you can eat buffet style? Food stations? Or is it more of a set meal? Depending on how the food is presented it might just take time and some thinking/planning on her part.

my suggestions to your daughter are

1. Do not go the the cafeteria during main meal time, go a little early or a little late. During main meal times cafeterias are crowded, lines are longer, and the risk of CC is higher. Plus people might be too busy to answer your questions.

2.Ask questions. Is this gluten free? Don't assume that things are or are not gluten free. Ask to see labels, ask about procedures, ask about dressings.....

3.Take a second look at that gluten free section and how she can use the items there to supplement her meals instead of looking there as the base of her meals.

4.reach out, see if you can find others on campus who have dietary needs and compare notes on how they are eating on campus.

5. Join the student dining committee, most schools have a student organization that is focused on meeting the student's dining needs/concerns. There she can voice her opinion of the schools gluten free options in a place where something can be done.

6. See a dr, get a dx or get tested. If you have a dr's note schools have to accommodate you, without it being gluten free is seen as a preference not a need.

7.Explore all dining options on campus, my college had the normal cafe, a grab and go cafe, taco bell, a late night dining place, and a convenience store. You might be able to find more options that way than only relying on the main cafe for food.

I apologize if I come off sounding bossy and for being long winded. I graduated college a little over a year ago so I remember all too well the food and how difficult it can be to find good quality food on campus. But, I also remember the people who thought that the food would change if they complained to their parents/friends about it enough.

carecare Enthusiast

Thanks all for you replies. I appreciate them all :). I'm going to visit her this weekend so I will have a good talk about what she should do next. I think a call to the kitchen staff or the dietician there at the school is in order. I'm sure they'll require a doctor's note so I'm going to convince her to get more testing a couple months down the road. She's being a bit stubborn as she knows she has problems with gluten but she doesn't see the seriousness in making sure she's completely gluten free. I think if she has a diagnosis then she'd have to really look into all that can happen to her health if she continues to eat gluten. For her not having a diagnosis means she can still eat it....even if it's making her sick. :blink:


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - ShariW commented on Scott Adams's article in Frequently Asked Questions About Celiac Disease
      4

      What are Celiac Disease Symptoms?

    2. - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

    3. - Scott Adams replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

    4. - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      1

      My only proof

    5. - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      1

      Methylprednisone treatment for inflammation?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,908
    • Most Online (within 30 mins)
      7,748

    ebrown
    Newest Member
    ebrown
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • klmgarland
      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
    • Scott Adams
      Based on what you've described, it is absolutely possible you are dealing with non-celiac gluten sensitivity (NCGS).  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.   Your situation is a classic presentation: a negative celiac panel but a clear, recurring pattern of symptoms triggered by gluten. The symptoms you listed—particularly the extreme fatigue, bloating, neurological-psychiatric symptoms like depression and anxiety, and even the skin manifestations like facial flushing—are all well-documented in research on NCGS. It's important to know that you are not alone in experiencing this specific combination of physical and emotional reactions. The only way to know for sure is to commit to a strict, 100% gluten-free diet under the guidance of a doctor or dietitian for a period of several weeks to see if your symptoms significantly improve. It is also crucial to rule out other potential causes, so discussing these symptoms with a gastroenterologist is a very important next step.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.