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Newly Diagnosed- College Student, Overwhelmed!


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13 replies to this topic

#1 katiehammond

 
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Posted 25 April 2013 - 12:30 PM

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?
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#2 bbuster

 
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Posted 25 April 2013 - 01:15 PM

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.


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Bev

Mom of Garrett - Mizzou freshman; diagnosed Jan 2005

#3 pretty in paleo

 
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Posted 25 April 2013 - 04:52 PM

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!


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#4 shadowicewolf

 
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Posted 25 April 2013 - 05:29 PM

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?


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#5 pricklypear1971

 
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Posted 25 April 2013 - 05:51 PM

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.
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
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Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#6 GottaSki

 
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Posted 25 April 2013 - 10:58 PM

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 :)


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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#7 GFinDC

 
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Posted 26 April 2013 - 07:02 AM

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.


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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#8 LDJofDenver

 
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Posted 26 April 2013 - 08:49 AM

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://allergiclivin...-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.triumphdi...CFQsy4Aod7lgApw

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.


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Diagnosed 8-8-08 (I think I'll remember that date!)
Positive blood panel
Endoscopy a little later on confirmed, via Small Intestine Biopsy
Adult son diagnosed Celiac in his late 20s
Suspect my Mother undiagnosed Celiac

#9 EmiPark210

 
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Posted 26 April 2013 - 01:16 PM

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. 


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IBS Diagnosis: 2010

Celiac blood results: 2/21/13 Positive

Biopsy: 4/19/13 - visually positive, 4/23/13 - positive


#10 anti-soprano

 
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Posted 26 April 2013 - 06:42 PM

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!!  


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#11 katiehammond

 
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Posted 27 April 2013 - 06:56 AM

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!!!


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#12 JoshKelly

 
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Posted 27 April 2013 - 09:10 AM

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 :)


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#13 bbuster

 
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Posted 27 April 2013 - 12:48 PM

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!


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Bev

Mom of Garrett - Mizzou freshman; diagnosed Jan 2005

#14 anti-soprano

 
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Posted 27 April 2013 - 05:11 PM

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!!


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