• Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

Newly Diagnosed- College Student, Overwhelmed!
0

Rate this topic

14 posts in this topic

Recommended Posts

Two weeks ago I was diagnosed with Celiac. I tested positive for Celiac with 2 blood tests. I have not had an endoscopy, and my symptoms seem so different from everyone that I have read on here. I have severe abdominal pain after eating gluten for about 2-4 hours, but then it goes away. I have seen that some people stay sick for a few days after, is that just one of the many symptoms that people can have? I know that Celiac has a variety of different symptoms, but I just don't know if I can fully wrap my head around the fact that this is happening to me. Maybe it's a little bit of denial...anyone else have symptoms like me?

I'm also in college, with a meal plan and no kitchen to cook. This makes it extremely difficult to avoid all gluten because every time I go into the Caf I am at risk of getting glutened. I have just been googling all the foods that they are serving, but even then, it is buffet style, so I know there is a risk for cross contamination. Anyone have any tips?

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


Go talk to the food services manager as soon as you can.  More and more colleges are aware of Celiac and other dietary restrictions, and have solutions.  That was the case at my son's university.

Share this post


Link to post
Share on other sites

Two weeks ago I was diagnosed with Celiac. I tested positive for Celiac with 2 blood tests. I have not had an endoscopy, and my symptoms seem so different from everyone that I have read on here. I have severe abdominal pain after eating gluten for about 2-4 hours, but then it goes away. I have seen that some people stay sick for a few days after, is that just one of the many symptoms that people can have? I know that Celiac has a variety of different symptoms, but I just don't know if I can fully wrap my head around the fact that this is happening to me. Maybe it's a little bit of denial...anyone else have symptoms like me?

I'm also in college, with a meal plan and no kitchen to cook. This makes it extremely difficult to avoid all gluten because every time I go into the Caf I am at risk of getting glutened. I have just been googling all the foods that they are serving, but even then, it is buffet style, so I know there is a risk for cross contamination. Anyone have any tips?

Hi, I am 19 but I go to a community college, we don't have meal plans and I'm not sure what that involves. Do they make you buy cafeteria food? I have not found anything safe to consume in my cafeteria but fruit, juice, tea, coffee and boiled eggs. Granted, I have other allergies, and like to eat healthy ! I basically just cook all my own food and bring nuts and fruit and stuff at school. you should really get a crockpot and maybe a food processor . If they have a microwave that will help out a ton. theres bags of veggies now where you just cut slits in the bag and steam it in the micro. I don't blame you for avoiding the buffet layout, that's one sure way to get contaminated!

Share this post


Link to post
Share on other sites

Do they make you buy cafeteria food?

 

A meal plan is a set of meals bought at the beginning of the semester for students who live on campus. They do offer smaller ones for commuter students as well. Similar, but less expensive sometimes.

 

Anyone have any tips?

What you need to do is get documentation from your doctor about your diagnosis and go to your schools disability office. If you are in the US that is, I don't know how it works outside of it.

 

They should help you set up accommodation in the food areas.

 

I would not do the buffet. I was in the dorms for my first two years of college and understand the issues that might cause.

 

Outside of that, are you allowed a microwave or refrigerator in your room?

Share this post


Link to post
Share on other sites

Two weeks ago I was diagnosed with Celiac. I tested positive for Celiac with 2 blood tests. I have not had an endoscopy, and my symptoms seem so different from everyone that I have read on here. I have severe abdominal pain after eating gluten for about 2-4 hours, but then it goes away. I have seen that some people stay sick for a few days after, is that just one of the many symptoms that people can have? I know that Celiac has a variety of different symptoms, but I just don't know if I can fully wrap my head around the fact that this is happening to me. Maybe it's a little bit of denial...anyone else have symptoms like me?

I'm also in college, with a meal plan and no kitchen to cook. This makes it extremely difficult to avoid all gluten because every time I go into the Caf I am at risk of getting glutened. I have just been googling all the foods that they are serving, but even then, it is buffet style, so I know there is a risk for cross contamination. Anyone have any tips?

Just so you don't feel alone, I used to have that type of pain. My gluten symptoms have changed over the years, so don't despair (for better or worse), they may change.

Share this post


Link to post
Share on other sites
Ads by Google:


Welcome Katie!

 

You have had excellent advice...I have two college age young men...they have been gluten-free for awhile and it gets easier....hang out, read as much as you can and ask questions...it helps a difficult transition speed along.

 

Hang in there :)

Share this post


Link to post
Share on other sites

Hi Katie,

 

Celiac disease symptoms are really variable.  Some people have no symptoms at all.  Others have mild symptoms and some have severe symptoms.  Symptoms can also change over time, and reactions can get more sensitive to small amounts of gluten.

 

Your school may have a student liason that can help you with getting celiac safe food.  You may not be the only student they have with celiac disease.  Perhaps if there is another you can work out a shared room so you can both be safer gluten-free.

Share this post


Link to post
Share on other sites


Ads by Google:


Two weeks ago I was diagnosed with Celiac. I tested positive for Celiac with 2 blood tests. I have not had an endoscopy, and my symptoms seem so different from everyone that I have read on here. I have severe abdominal pain after eating gluten for about 2-4 hours, but then it goes away. I have seen that some people stay sick for a few days after, is that just one of the many symptoms that people can have? I know that Celiac has a variety of different symptoms, but I just don't know if I can fully wrap my head around the fact that this is happening to me. Maybe it's a little bit of denial...anyone else have symptoms like me?

I'm also in college, with a meal plan and no kitchen to cook. This makes it extremely difficult to avoid all gluten because every time I go into the Caf I am at risk of getting glutened. I have just been googling all the foods that they are serving, but even then, it is buffet style, so I know there is a risk for cross contamination. Anyone have any tips?

DO NOT DESPAIR!  There's a whole wonderful gluten free world out there. 14 yrs ago when my son was diagnosed we had to order everything via internet.  Now there is an abundance of gluten free foods in the mainstream.

 

Important article for you to read:  Celiac Disease is a disability and recent ruling  huge impact on Celiac students with meal plans

http://allergicliving.com/index.php/2013/04/10/lesley-u-decision-a-victory-for-allergy-celiac-access/

 

 

I'd recommend you order one of the gluten free grocery guides, these are life savers and will end you standing in grocery aisle reading packages for 20 minutes.  There are several (are also apps out there), here are two popular ones:  

Triumph Dining http://www.triumphdining.com/?gclid=CJXYkfnj6LYCFQsy4Aod7lgApw

and Cecelias Marketplace  http://www.ceceliasmarketplace.com/

 

You need to be aware also that you will need a dedicated toaster (yes, toast crumbs can hurt you), colander, cutting boards, etc 

 

I had/have similar symptoms - if I ingest gluten I am doubled over within 45min-1hour, and it racks me for several hours. Also had many many more symptoms (like gluten ataxia, for one, dermatitis herpetiformus) that would show up next day (or two) - all depending on how much gluten I ingested and over what period of time, etc.  It is individual, some folks with extreme damage showed few or no symptoms!  The blood work doesn't lie.

Share this post


Link to post
Share on other sites

Welcome! And it will be okay. I just got diagnosed too (by blood in February and my biopsy was last week) and I also happen to be in college! It's difficult at first and you will always be at risk eating something you don't make, but it doesn't mean you have to starve.

 

Find out how to contact your dining services. As someone who is on a meal plan, they cannot deny you food. So contact dining services and state exactly what your needs are. Even at smaller schools, you are not alone. By now, the manager, two of the chefs and the worker who has the easiest access to the gluten free refrigerator all know my name and needs. You have to talk to people and be prepared to do a lot of educating. You should be allowed to see labels of everything that goes into a dish that has one. If there are cross contamination issues, if you go at the start of a meal time, they will have extra dishes made so they can keep the buffet stocked. Ask if you can pull from those because of CC. 

 

As people have said, there are some "standard" symptoms, but we all have different ones and they change over time. Mine used to be bad pain (due to my colon spasming), D/C cycles and the like. Now my limbs start tingling, I can't think straight anymore, and I get really bad vertigo just from standing up. For me it also depends on the amount of processing of the gluten (I know this from going back on for the endoscopy): pasta would make me physically sick, but rice crispies (with gluten) messed with my mind. It also depended on time of day. It's very variable. 

Share this post


Link to post
Share on other sites

One of my first noticeable symptoms was rib pain, both on the sides and at the sternum/breastbone.  That showed up about 10 years ago and it was a mystery to doctors since I had no other symptoms.  They called it muscular pain.  I was just diagnosed in August.  Therefore, I can tell you that symptoms became increasingly worse and numerous over time as the celiac went unchecked.  The year before my dx was pure hell.  My body was breaking down and no one could give me an explanation.  I lost a lot of hair, I could no longer wear contacts because I had dry eye, I could no longer exercise because I felt like crap all the time, my stomach was swollen almost always, and I withdrew socially because I was experiencing such high levels of anxiety.  (There were many more symptoms, but I'm sticking to the ones I would have cared most about at your age.)

 

Listen closely when I say: DON'T BECOME ME!!!  Make sure you take care of it now and save your body from further damage by being careful and diligent about your food, even though your symptoms may not be such a big deal at the moment.  You have a chance that many of us never had to save yourself from years of poor health.  So, congrats on your early diagnosis and to the doc that looked in that direction!  Your future is bright if you follow the diet!!  

Share this post


Link to post
Share on other sites


Ads by Google:


Thank you SO MUCH everyone! Sorry I'm just now posting again...still getting used to this forum! But you all have helped so much! It's so comforting to have other people encourage me! I do have a microwave and a fridge in my room! Yesterday I met with one of my professors who is also a dietician and she encouraged me to start a student organization on campus for other students with Celiac. She said there are a lot of us.  And our cafeteria is going to start to become much more gluten friendly with labeled menus! She also mentioned that I could meet with the director of food services and ask to get corn chex in the cereal section.  Good things are happening!

 

Also, I am currently visiting a friend at her house, and it's been a bit challenging for me to explain that I cannot eat what she is cooking. She's been so nice about it and actually bought me gluten free pancake mix, but I am just curious about what is the right way to tell people that you can't eat the food they make you.  I don't like being a nuisance or a burden, that makes me feel uncomfortable. I know I'm going to have to get over that...but are there any good phrases you guys use that are nice, but informative?

 

Thanks again everybody! You all are great!!!

Share this post


Link to post
Share on other sites

Katie I'm smiling to myself right now because I TOTALLY relate to what you're saying. It's taken me far too long to deal with my own feelings about myself and celiac disease to get comfortable asking people and telling people what I need. Here's a few quick tips I use:

 

-If you're going over to someones house for a meal, tell them before hand "I just got diagnosed with a thing where I can't eat gluten. Is that gonna be ok? Can I bring something maybe?" --> this avoids embarrassment for everyone and allows you to not feel like a burden.

 

-If its someone I don't know like a waiter or someone I don't think will really understand well (older folks sometimes fall into this category like my friends grandma) I'll usually just say its a "Really Severe Allergy" cause that's something people understand and it avoids people thinking 'this is a crazy health nut that wants me to go out of their way for their whim'. Remember that your eating is not a whim! celiac disease could kill you over time.

 

-Worse comes to worse just try to be as honest as possible. "I'm so sorry I couldn't tell you before. I feel horrible cause you went to all this effort. I've just been diagnosed with Celiacs and I can't eat it. Maybe I can just have some fruit." --> People usually get it. And you probably do feel bad. So just communicating that to them will overcome 99% of any awkwardness. Then adding "I can just have some ______" will allow them to feel like they didn't fail at feeding you.

 

We humans have a very emotional relationship with food. Part of what makes celiac disease so hard to navigate socially.

 

Let's get in touch. I know its crazy to navigate Celiacs and all the information (sometimes conflicting) out there. Maybe I can help. PMing you :)

Share this post


Link to post
Share on other sites

Thank you SO MUCH everyone! Sorry I'm just now posting again...still getting used to this forum! But you all have helped so much! It's so comforting to have other people encourage me! I do have a microwave and a fridge in my room! Yesterday I met with one of my professors who is also a dietician and she encouraged me to start a student organization on campus for other students with Celiac. She said there are a lot of us.  And our cafeteria is going to start to become much more gluten friendly with labeled menus! She also mentioned that I could meet with the director of food services and ask to get corn chex in the cereal section.  Good things are happening!

 

Also, I am currently visiting a friend at her house, and it's been a bit challenging for me to explain that I cannot eat what she is cooking. She's been so nice about it and actually bought me gluten free pancake mix, but I am just curious about what is the right way to tell people that you can't eat the food they make you.  I don't like being a nuisance or a burden, that makes me feel uncomfortable. I know I'm going to have to get over that...but are there any good phrases you guys use that are nice, but informative?

 

Thanks again everybody! You all are great!!!

 

So happy to hear things are improving.  When I went with my son to talk to food services, they were very helpful and offered to special-order pretty much anything he asked for.

 

With regard to what to say to people, I usually say my son has an autoimmune disorder and even a crumb of bread or speck of flour is enough to make him sick.  If they ask questions you can say more, but you don't really have to.  While times are changing, a lot of people hear the term gluten and don't exactly know what it means.  (I sure didn't before my son was diagnosed.)  Some people just won't believe that a tiny amount would cause a problem, but if they push that issue just confidently assure them that it DOES, and you can't chance your health, both immediate reaction (if you have it) and long-term effects.

 

And rest assured, there are many people out there going through the same thing - seek out resources to help you, and this forum is a great place to start.

 

Good luck and hang in there!

Share this post


Link to post
Share on other sites

I do have a microwave and a fridge in my room! Yesterday I met with one of my professors who is also a dietician and she encouraged me to start a student organization on campus for other students with Celiac. She said there are a lot of us.  And our cafeteria is going to start to become much more gluten friendly with labeled menus! She also mentioned that I could meet with the director of food services and ask to get corn chex in the cereal section.  Good things are happening!

So glad to hear that you're making adjustments!  You go girl!!

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

0

  • Forum Statistics

    • Total Topics
      108,142
    • Total Posts
      939,890
  • Member Statistics

    • Total Members
      66,131
    • Most Online
      3,093

    Newest Member
    Larryx
    Joined
  • Popular Now

  • Topics

  • Posts

    • My son is 13 and we have been dealing with his unusual issues for years. By 3rd grade, he was The Hulk, breaking things, punching holes in walls and raging. He had depression, anxiety and panic attacks. His skin would have rashes or turn bright red and i didn't understand why (now i know it's salicylic acid added to conditioner, sunscreen, lotion, ect). We realized that dyes were a problem and cut those out. Little by little, we removed sulfur, sulfites, preservatives, salicylates (aspirin-we assume he will be allergic to this but he has never had it and we won't ever test it, most fruits, spices, veggies and honey), nitrates, soy sauce and many more. He lived on an all home made, special diet and he was better but not well. (We did the Feingold and Failsafe Diet but that wasn't enough). He was diagnosed with hypersensitivity to medication by 5th grade (tried anti-anxiety meds-big mistake). Consecutive doses of anything would get stuck in his body and then the real fun started, full body rash, suicidal thoughts, vomiting and my least favorite-hallucinations. He was in the ER for a fall from a tree and they gave ibuprofen and Vicodin. Within 30 minutes the rash spread up and down his whole body (including under the damn cast). The worst night of my life was trying to keep him from breaking his own cast off and talking him down from trying to hurt himself.                                                                                                                                                                                                                                                             We tested my son for everything and anything, hormones, vitamin deficiency (later found out they don't test for nearly enough to really know) and thyroid. Everything was normal but a mildly low vitamin D level. He was very unhealthy, he was sick a LOT, allergies were bad, asthma and he developed food intolerances out of nowhere. We did a gluten/dairy free diet (because his sister is gluten/dairy free) but it made no difference and his diet was already so restricted. We did a year long food journal and also found an issue with pork, apples, citrus fruit, cinnamon, ect.  I researched my kid like it was my job. We tried many vitamins and supplements and he had bad reactions to many of them. I finally found a man with several of the same gene mutations (we tested with 23andme.com) who's Dr. thought it was a PST-Pathway issue. We decided to try the protocol of vitamins, supplements and amino acids to see if it made any difference and OMG, what a difference. At this point, we didn't have a pediatrician that actually listened so I asked several doctors about the specific vitamin/minerals/amino acids and kept all the does to a child size dose.  We had always used epsom salts as a response to a reaction in something, not as a preventative measure. We now soak his feet twice a day in Epsom salt water (or in the bath), it gives him a form of sulfur that his body was missing and now he can eat anything he wants (except soy sauce but we'll gladly leave that out). He takes molybdenum everyday with magnesium/calcium and vitamin D3 (and when we stop that, panic attacks come back. Weekly he takes milk thistle (we tried L-Glycine but too much gave him terrible insomnia (like 3 days of barely any sleep) and milk thistle works just as well to keep his liver open and working it's best), B vitamins, Cod liver oil capsules with Vitamins A and D and liquid Zinc.  His personality changed on the L-Glycine in a more outgoing way but then in a manic, not himself way so that scared us. Since the supplements started (6 months ago), his anxiety and depression is gone (and it was really controlling how we lived). He would never talk to people before...he was diagnosed with selective mutism but we felt that was incorrect and he was just very shy. He never liked talking with adults. Now, there is no problem, he is not super chatty with everyone but all he adults in our family noticed immediately. He is ready to stop home schooling and start high school next year. He has become a responsible, sweet, calm and caring child. No more daily fights, no more holes in the walls, no more rage. Our daughter has anorexia and we have been very busy dealing with her behaviors and missed the daily vitamins on occasion for several days....old son comes raging back. It doesn't take too long to figure out the mistake and gets him back where he needs to be. We did some genetic testing with a neurologist who specializes in metabolic function and while he tested for some helpful issues relating to hypersensitivity to medication, I still got the impression that he thought it was a placebo effect. We have burned through many therapists, pediatricians, a neuropsychologist, a psychiatrist, a gastroenterologist and possibly this neurologist. I hate not being taken seriously because while they may not agree with my ideas, they have nothing to offer in return.   
    • Yep no fruit, juice, sugar, or grains like oatmeal. The sugars glucose, fructose etc. Are common causes of flares in some. Sugar free fiber like nuts, but butters, cocanibs seem to be great for me. Keto diet sugar free high fat, mostly over cooked to mush or blended works great for me......heck as a baker I had to invent low carb, grain free, starch free bread. Sorta lead to a god like revelation and business took off with diabetics and my bakery.
    • Gastritis was my initial diagnoses before finding out I had celiac. The pains from the gastritis were terrible. I had to wake up in the middle of the night to eat cause I felt nauseous. The Doc prescribed me omeprozole and antacids. I took the meds for about a week but I cured it mostly by not drinking and eliminated caffeine intake. Alcohol was one of the main causes for mine 
    • The UC is a whole different beast. I’ve been eliminating tons of food. Meat is definitely good to me. I can eat all the steak, chicken, and pork without problems. I agree that paleo would be great for me. I’m gonna look more into their recipes.  Have you had any problems with fruits and veggies causing flare ups? I make smoothies with mixed berries, banana, gluten free oatmeal, spinach, and a splash of juice. It seems to be a cause. Maybe it’s the high fiber? I’m not sure. That and caffeine. I’m having a hard time eliminating caffeine though  
    • Pain wise a glutening celiac gets me more central gut pain and much worse with sharpness, urge to vomit, gurgles etc. UC is more along the the outside edges of your abdomen from the sides, lower area around the belt line, and upper area right under the rib cage, and is more of a boat and pleasure pain like your intestines are huge feeling.  UC triggers alot more gas, and makes you want to lie down I get the urge to massage and press on the pressure areas as it seems to help.
      Timing wise Celiac glutening I notice within 20-60mins and main vomiting starts in 1-3hours after eating it. UC flare you get it like 4-18hours or later depending on transit time of your food. A glutening will normally result in both a celiac reaction and a later UC reaction. For me a gluten CC or consumption issue also causes neurological symptoms, this is not true for some people but for me I also have a gluten ataxia, so the anxiety, panic, fog, mind looping, numb hands, loss of coordination or straight up motor loss is definite sign for me. Others will have to keep track with a food diary to nail down there own as every person can have a slightly different reaction.

      I also find with UC I do not directly vomit, Sometimes with UC it can trigger constipation and if not remedied in 12-24 hours leads to m system backing up and vomiting. Celiac can also cause me constipation but there is a slight difference in where it seems to get stuck at first. Hard to explain but you can sort of feel it. Also I find a gluten celiac response will result in a week or more of constipation issues. Starting mid section then moving to the outside gut area and  but some people do not get these and get D instead. So this is not very reliable.

      UC flare ups for me with my damage also always have bloody stools, worse flare ups its not just streaks but clots. Red and Dark red show it is in the large intestines. If you get tar like black  and red it is either a sign it is way back in the large intestine or in the stomach or small intestine. This makes my Anemia SOO much worse. Imagine how you feel with the loss of blood coupled with inability to efficiently absorb nutrients like iron and magnesium

      Thing to recall is UC is mostly the large intestine while celiac is mostly the small, so symptoms and trying to get the feeling of where the problem is can help.  Also if you get a glutening expect to have the UC flare up right after the celiac flare up.

      NOTE it is hard for me to say still, on the exact details and clarity, it has been since june of last year that I had a major gluten consumption issue. UC I get more regular but without the direct comparison in a while my memory is a bit iffy. Just trying to recall those exact pains and feelings from that last time. Also UC seems to wax and wane in and out while almost always being present for months in the background you just feel a bit off in the gut. SO many triggers, I felt that for years I swear til I went to this keto diet and dropped all fruit, sugar, carbs, and grains. Could have been the anemia, but I think it was more of a combination of the inflammation, bleeding, gas, and just being uncomfortable.
  • Upcoming Events