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

Feeling Totally Overwhelmed

Kiwikins

By Kiwikins
in Coping with Celiac Disease

Recommended Posts

Kiwikins Newbie
Kiwikins
Posted

Well, as the title says, I have found myself completely overwhelmed with this wretched disease. I am currently a sophomore at a huge state university and just found out I would not be getting my illness related absences excused because "I should just avoid eating gluten and then I would be able to go to class no problem." Excuse me while I scream in frustration. You would think that the disability service office of a school with more than 30,000 students would be SLIGHTLY familiar with celiacs, but it seems that is not the case here. I really want to do nothing more than curl up in my bed and cry. Melodramatic? maybe. But I have reached the point where I don't even feel like trying anymore. It doesn't matter what I eat because everything in the dining hall is contaminated, even when they specially prepare the meal for me. I've had the disease for a little under a year and I'm totally losing steam with the diet in general, which is especially dangerous with my first gluten free thanksgiving coming up. I really don't even know what to do anymore, or where to turn, but I definitely recognize that this has gone past the "just pull yourself up" stage. Sorry for all the whining :(

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

Celiac.com Sponsor (A8-M):


Skylark Collaborator
Skylark
Posted

This is where you come to whine. No need to apologize. ((( hug )))

It sounds like you need to be off the meal plan. Is there any way you can get a hotplate or microwave and a small fridge in your dorm? Do you have a bike or a way to get to a grocery store? Even living on peanut butter and bananas would be better than getting glutened all the time. I'm sure your feeling of wanting to curl up and cry is partly that darned gluten affecting your mood.

T.H. Community Regular
T.H.
Posted

Oh goodness, no, you're not whinging! Very, very legitimate gripe. But I think perhaps reading the following might help:

Open Original Shared Link

It has to do with public school, not universities (in the USA), but it is relevant to your circumstances for one reason: Celiac Disease can be considered as covered under the American Disabilities Act, depending on how much it affects you (and this sounds like it is affecting you greatly) so if your university has a group or department that deals with disabilities, or more to the point, that deals with students with disabilities that are getting the run around by the university, you should go see 'em.

The relevant part of the act (quoted from the above website), as it can apply to you, is this:

"...Under the Americans with Disabilities Act, a person with a disability is defined as,

shopgirl Contributor
shopgirl
Posted

Don't worry about whining. I'd be surprised if there was someone here who hadn't broken down in frustration at one point or another...several times. Two weeks after I was diagnosed, I started crying in a grocery store and had to just leave my cart and get out of there.

You need to push harder with your school. Can you get your doctor to go to bat for you? Or any doctor for that matter? And I agree with trying to get a microwave and mini fridge in your dorm. It would make it so much easier on you.

In the meantime, find yourself some Larabars or gluten-free cereal that you can carry around with you so you at least have something safe at all times. I never leave the house without some little gluten-free snack because I never know if I'll be able to find something that I can eat.

kareng Grand Master
kareng
Posted

Are your parents paying for your school? I know you are an adult but sometimes a parent's complaints are heard better. Also, do you have a law school on campus? Or a lawyer in the family? The threat of a law suit can snap a business into action. Even if your uncle is only a will and trust attorney. A letter could still be scary.

In the mean time, you will have to do your own thing food wise.

You could go to the websites of respected Univ med centers Celiac centers and see if they have any info on cc you could print off, highlight and show Food Services, Admin,Dorm Admin, and Disability and maybe a teacher or two. Try Maryland, Chicago and Columbia.

Also, what school is it? You never know when someone reading here might have a connection.

polarbearscooby Explorer
polarbearscooby
Posted

Well, as the title says, I have found myself completely overwhelmed with this wretched disease. I am currently a sophomore at a huge state university and just found out I would not be getting my illness related absences excused because "I should just avoid eating gluten and then I would be able to go to class no problem." Excuse me while I scream in frustration. You would think that the disability service office of a school with more than 30,000 students would be SLIGHTLY familiar with celiacs, but it seems that is not the case here. I really want to do nothing more than curl up in my bed and cry. Melodramatic? maybe. But I have reached the point where I don't even feel like trying anymore. It doesn't matter what I eat because everything in the dining hall is contaminated, even when they specially prepare the meal for me. I've had the disease for a little under a year and I'm totally losing steam with the diet in general, which is especially dangerous with my first gluten free thanksgiving coming up. I really don't even know what to do anymore, or where to turn, but I definitely recognize that this has gone past the "just pull yourself up" stage. Sorry for all the whining :(

Oh my gosh, I feel your pain. Im a sophomore at a CHRISTIAN university (I put this in caps for the stupidity that follows). If you live on campus you HAVE to have a meal plan. So I live off campus with my parents (I'm not old enough according to my colleges rules to live alone) because I can't eat ANYTHING in the Caf. And when I became over absent (after 6 misses) I tried to explain to my prof's why I missed. The general consensus was the same as yours "If you avoided wheat you'd be ok". Makes me so freaking angry that they preached grace but gave none.

Anyway that's my rant....

If you need someone to rant to you can DM :)

Loey Rising Star
Loey
Posted

Well, as the title says, I have found myself completely overwhelmed with this wretched disease. I am currently a sophomore at a huge state university and just found out I would not be getting my illness related absences excused because "I should just avoid eating gluten and then I would be able to go to class no problem." Excuse me while I scream in frustration. You would think that the disability service office of a school with more than 30,000 students would be SLIGHTLY familiar with celiacs, but it seems that is not the case here. I really want to do nothing more than curl up in my bed and cry. Melodramatic? maybe. But I have reached the point where I don't even feel like trying anymore. It doesn't matter what I eat because everything in the dining hall is contaminated, even when they specially prepare the meal for me. I've had the disease for a little under a year and I'm totally losing steam with the diet in general, which is especially dangerous with my first gluten free thanksgiving coming up. I really don't even know what to do anymore, or where to turn, but I definitely recognize that this has gone past the "just pull yourself up" stage. Sorry for all the whining :(

No apologies are ever needed here for whining. I agree that if it's possible you should try to get a mini fridge for your dorm room. I don't think that they allow microwaves. As far as the absences there are laws that the colleges have to abide to and again, in agreement with other posts, perhaps your parents can write a letter. You should not be punished for something that isn't your fault. I found out I had celiac in June and had my son tested before he left for his freshman year so I could deal with his meal plan. Fortunately he tested negative. Hang in there and know that we're all rooting for you!!

Loey

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

Celiac.com Sponsor (A8-M):


Kiwikins Newbie
Kiwikins
Posted
  • Author

First off, thank y'all so much for taking the time to respond. I do have a microwave and fridge, but I also have an idiotic roommate who doesn't understand how sick I get :(. Currently, I'm at NCSU, and have tried every avenue I can think of with the disability office, short of going in there and screaming until I feel justified. Because they wont recognize the illness even with several notes from my gastroenterologist, I'm going to fail at least one class. The system they have in place is absolutely ridiculous. I tried going to the student health center once after getting severely "glutened" and they basically told me not to waste their time if I knew what was wrong, which means I cant get notes for missed classes, which is really peachy since you either need a docs note or a file with the DSO office to be excused. oh and, I'm paying for all this BS, but they treat me like some damaged little toddler. If anyone knows the proper avenues to take with NCSU, PLEASE let me know.

GuyC Newbie
GuyC
Posted

Do you have a campus newspaper? They might listen to your plight and run a story. That could bring some attention to the situation. Just a thought...

sahm-i-am Apprentice
sahm-i-am
Posted

First off, thank y'all so much for taking the time to respond. I do have a microwave and fridge, but I also have an idiotic roommate who doesn't understand how sick I get :(. Currently, I'm at NCSU, and have tried every avenue I can think of with the disability office, short of going in there and screaming until I feel justified. Because they wont recognize the illness even with several notes from my gastroenterologist, I'm going to fail at least one class. The system they have in place is absolutely ridiculous. I tried going to the student health center once after getting severely "glutened" and they basically told me not to waste their time if I knew what was wrong, which means I cant get notes for missed classes, which is really peachy since you either need a docs note or a file with the DSO office to be excused. oh and, I'm paying for all this BS, but they treat me like some damaged little toddler. If anyone knows the proper avenues to take with NCSU, PLEASE let me know.

Hey! I live in Raleigh, NC!! Hi!

I am so sorry you are having so many problems with the school. Do you belong to any

of the local support groups for Celiacs? I'm wondering if any of them have contacts with State. I will ask around for you. Is your family local?

PM me if you ever need local support, okay? wbrant@nc.rr.com

Wendi

sahm-i-am Apprentice
sahm-i-am
Posted

Here is a link to local support: Open Original Shared Link

Zach is very proactive and has lots of resources. I will continue to search for others.

There has got to be someone out there that can help you - that's just ridiculous!

kareng Grand Master
kareng
Posted

The student newspaper is a good idea. Also, local news media.

Did you try to find a lawyer to write a note? I'm hoping you could find a public aide or a relative who could help.

Individual professor have no say in whether they want to excuse an absence or allow you to make something up? If they do, you might talk to them. They could be s :ph34r::ph34r::ph34r: s, too but its worth a try. Go armed with your GI's notes. Be really graphic about the problems.

As for the roommate: if you can't make her understand, you will have to resort to drastic measures. You can get plastic or wooden camp boxes with a place for a padlock. Sometimes they are in the car section at Walmart or Target & at hardware stores. You may need to lock up most of your food, dishes, even the microwave. You can get fridge locks too.

Skylark Collaborator
Skylark
Posted

Thank you for sharing your school - it helps. Go to student legal services. Open Original Shared Link You are being denied your rights under Section 504 of the Rehabilitation Act of 1973. NCSU is a state school and receiving federal funding so they have to make accommodations that ensure you equal access to education. section 504 has also been recently strengthened. Open Original Shared Link

Here is evidence of the federal funding.

Open Original Shared Link

What you need is called a 504 Plan under the "Other Health Impairment" clause that guarantees you either access to gluten-free meals on the meal plan (which obviously isn't happening), a gluten-free dorm room where you can prepare your food, or excuses from missed classes if the university cannot provide either of these things. Since your disability office is useless, perhaps student legal services can hit them over the head.

If you can afford the extra $270 a semester, the best thing to ask for would be an immediate move to a single dorm room under a 504 plan and a guarantee of single housing for the rest of your college stay. You also need to ask to be excused from absences from the start of the semester until the move since you cannot obtain gluten-free food at the cafeteria or prepare gluten-free food with your current roommate.

By the way, locking your stuff up is a great short-term solution. It's not the most friendly move, but your roommate is not leaving you many choices.

sahm-i-am Apprentice
sahm-i-am
Posted

Man Skylark, you sure know your way around!! Awesome tips - thanks!

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,662
    • Most Online (within 30 mins)
      7,748
    Vickie F
    Newest Member
    Vickie F
    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

    • Inkie
      Tea Bags and Gluten

      By Inkie · Posted

      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      Tea Bags and Gluten

      By Scott Adams · Posted

      While plain, pure tea leaves (black, green, or white) are naturally gluten-free, the issue often lies not with the tea itself but with other ingredients or processing. Many flavored teas use barley malt or other gluten-containing grains as a flavoring agent, which would be clearly listed on the ingredient label. Cross-contamination is another possibility, either in the facility where the tea is processed or, surprisingly, from the tea bag material itself—some tea bags are sealed with a wheat-based glue. Furthermore, it's important to consider that your reaction could be to other substances in tea, such as high levels of tannins, which can be hard on the stomach, or to natural histamines or other compounds that can cause a non-celiac immune response. The best way to investigate is to carefully read labels for hidden ingredients, try switching to a certified gluten-free tea brand that uses whole leaf or pyramid-style bags, and see if the reaction persists.
    • Scott Adams
      Inconclusive results

      By Scott Adams · Posted

      This is a challenging and confusing situation. The combination of a positive EMA—which is a highly specific marker rarely yielding false positives—alongside strongly elevated TTG on two separate occasions, years apart, is profoundly suggestive of celiac disease, even in the absence of biopsy damage. This pattern strongly aligns with what is known as "potential celiac disease," where the immune system is clearly activated, but intestinal damage has not yet become visible under the microscope. Your concern about the long-term risk of continued gluten consumption is valid, especially given your family's experience with the consequences of delayed diagnosis. Since your daughter is now at an age where her buy-in is essential for a gluten-free lifestyle, obtaining a definitive answer is crucial for her long-term adherence and health. Given that she is asymptomatic yet serologically positive, a third biopsy now, after a proper 12-week challenge, offers the best chance to capture any microscopic damage that may have developed, providing the concrete evidence needed to justify the dietary change. This isn't about wanting her to have celiac; it's about wanting to prevent the insidious damage that can occur while waiting for symptoms to appear, and ultimately giving her the unambiguous "why" she needs to accept and commit to the necessary treatment. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
    • Scott Adams
      Medication

      By Scott Adams · Posted

      Welcome to the community! Generally, for a gluten challenge before celiac disease blood tests, Tylenol (acetaminophen) is considered safe and should not interfere with your antibody results. The medications you typically need to avoid are those like ibuprofen (Advil, Motrin) or naproxen (Aleve) that can cause intestinal irritation, which could potentially complicate the interpretation of an endoscopy if you were to have one. However, it is absolutely crucial that you confirm this with either your gastroenterologist or your surgeon before your procedure. They know the specifics of your case and can give you the definitive green light, ensuring your surgery is comfortable and your celiac testing remains accurate. Best of luck with your surgery tomorrow
    • Xravith
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By Xravith · Posted

      Thank you for the advice. I’ve actually never checked for nutritional deficiencies, but for as long as I can remember, I’ve always taken vitamin and mineral supplements — otherwise my symptoms get worse. This week I stopped eating gluten to confirm whether my symptoms are really caused by it. Starting next week, I’ll reintroduce gluten — it’s sad to go back to how I was before — but at least I’ll be able to take the necessary tests properly. I think the diagnostic process will be long, but at least I’m happy that I finally decided to address this doubt I’ve had for years.
×
×
  • 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.