Pretending To Be Fine But Really Falling Apart

[GirlinBlue]

Hello This is my first post! 

My name is Hannah and I am 21 years old, in my third year of college at a very rigorous academic university. 

I got my celiac diagnosis this summer and since then have really tried to take everything in swing. The diagnosis was VERY unexpected. Nobody in the family has it (but my mom is adopted) and I didn't have a lot of the "stereotypical" symptoms, more like a ton of fatigue, brain fog, and anxiety. But after the endoscopy, I was told that my intestines were very damaged, suggesting at a severe reactance and long history of the disease. I also have Hashimoto's.

So having received a life changer out of the blue, I tried really hard to take everything in stride.

Basically this is what the last 5 months have looked like: 

Can't eat that? Fine, whatever. Someday I'll find a gluten free version. Can't engage in meals with friends? It's okay, it's all about the company anyways, right? Got glutened? It'll pass. Eventually. Hopefully. Until it happens again. My friends tell me every time they eat something gluten free, like I should give them a gold star? At least they're trying to help in their own somewhat unhelpful way. I had to turn down a travel opportunity because they couldn't guarantee that they could get me gluten free food? That's okay, it just wasn't meant to be then, right? Right? RIGHT? *screams*

Every situation I just push things away, trying to tell myself it's okay, it's fine, it's fine, it's fine... Because it kind of has to be, I have so many things to do and responsibilities. But I'm now at the place where I feel like I can't keep doing this anymore. My health is still shaky, I have gotten glutened a couple times, or I'll randomly feel horrible but not know why, other times I'll just totally forget to eat, my grades are dropping, and I generally feel overwhelmed. I was already bad at making sure I ate (I am always on the go, with a really busy college schedule) BEFORE the diagnosis (aka when eating was easy) so now that there are so many factors, it is really not helping. 

Additionally, I share a kitchen with my 4 other apartment-mates - it's not a gluten free kitchen by any means. Sometimes there are crumbs everywhere. I have my own cupboard and essential dishes as well as my own scrubby to wash my dishes, and I try not to touch anything, but I'm not sure if this is cutting it. Any tips on sharing an apartment with gluten-y people?

Finally, I always feel guilty and annoying for constantly inconveniencing people. Like asking tons of questions, reading labels of everything, being that annoying person. I can't even ask servers to change their gloves without feeling bad about it... Thankfully my family has been super supportive. But I still feel guilty and like a hassle, along with trying to cope with all my own feelings of sadness and anger over the situation. 

I really would appreciate all and any advice! I don't really know anyone with celiac so I've been feeling very alone and incredibly overwhelmed. Would love to hear from anybody, even if it's just a "hello, I understand." Because I need that! 

[cyclinglady]

Well....you are not alone!  This is a great online community.   We are here to offer tips, support and just a shoulder to cry on.  

I am not a college student anymore, but I can offer some tips.  Read our "Newbie 101" thread located at the top of the "Coping section".  I do hang out at a lake house with tons of family members who eat gluten.  I keep a large plastic bin of kitchen gear in my room.  This prevents others from accidentally "borrowing" my gluten-free items.  This includes cookware and some food.  A hassle to carry it back and forth, but it keeps me safe. 

Like planning out your school assignments/projects, you are going to have to manage your "celiac" class.  That means spending a little time on the weekend planning your meals and snacks for week.  You should always have gluten-free snacks in your backpack (I always do).  Not sure if you get back to your apartment to eat lunch, but if not, bring a small soft cooler to carry a few items like yogurt, cheese, nuts, fruit, veggies....whatever.  In a pinch, kit the bookstore for a chips, etc. or a drink.  

Never feel guilty about taking care of your health!  I am sure others will welcome you and provide more tips.  

Hugs!  

[tessa25]

I didn't have any food restrictions in college but I'll give this a shot. Get in the habit of cooking your entire weeks food on Sunday. Divvy it up into individual servings and refrigerate them. That way you can concentrate on having everything be clean for this one day but the rest of the week you are just microwaving Rubbermaid containers. Because you have roommates it wouldn't hurt to buy a small cube fridge at Walmart to keep most of your food separate. Get a crockpot, make stews for the week.

By some cold cuts and have sandwiches for lunch . Canyon bakehouse plain bagels would make great sandwiches, or their multigrain bread would be good as well.

Cook up some Barilla gluten-free fettucini and store it in a separate container. You can add it to whatever it is your heating up. College students love their pasta.

By some pizza makings and freeze them. It takes all of five minutes to make a pizza from frozen ingredients. I start with  Etalia pizza crust, (Schar or Udis are good as well), Escalon six in one crushed tomatoes, mozzarella cheese. Divvy up the sauce into individual frozen packets and do that with the mozzarella cheese as well. That way anytime you want pizza it's just a few minutes for you to set it up and stick it in the oven on aluminum foil. You just have to learn how much sugar and salt to add to the sauce to make it taste the way you like it.

If you're going to a friends house to eat bring your own food with you. Try to make it similar to what they're having. If you know what restaurant you're going to with friends go online and look at their menu to figure out what the safest thing is for you to eat.

If you want information on a good equivalent to something that you like just ask here and several people will probably respond.

Good luck it gets easier as time goes by. I hope you like cooking.

 

 

 

[Earthflowcreate]

I feel for you I was also diagnosed in college, and had to deal with room mates that weren't gluten free. They were all very nice room mates but they didnt understand really what celiac was. I would also recommend making a few meals at the same time and refrigerate or freeze them to heat up later in tupperware in the microwave. This way you wont have to have the kitchen cleaned every time you want to make something. You should also keep snacks in your room so that you dont have to worry about people eating them.

Also carry gluten free snacks with you at all times just in case you need something to eat and there is nothing gluten free available. There are alot of cafe's and restaurants now that cater to gluten free. So if you are going out with friends call the restaurant to see if they cater to gluten free before you go. It is a little stressful  I know to do this all the time. After a while it will become easier to to do this. Sometimes it will be an adjustment to the menu they will to make for you such as making steak with a baked potato instead of fries or not putting the sauce on a dish and substituting with a different sauce or no sauce at all which is what i often would do when i first got diagnosed i just asked them to make things more plain just to make sure there was no issues I find it alot easier now because there are alot more restaurants that have separate gluten free menus or items listed as gluten free on the menu. (try to pick restaurants with options like this if possible and you are choosing where to go) If going to an italian restaurant check to see if they do gluten free pasta, they don't always advertise this but they have it. There are alot of restaurants now doing gluten free pizzas as well. Hopefully you can find some restaurants that you and your friends both will like. Also if you are going to friends houses bring your own food with you if you are worried you wont have anything to eat. There are alot of takeaways that will cater now to gluten free diets as well so hopefully you have some locally, just call them up to discuss to see if  they have any options. I find indian's are way better than chinese for gluten free options. Also domino's do gluten free pizzas now as well as pizza hut. 

Buy some gluten free cook books or if you are using ordinary cook books just substitute the gluten containing ingredients for gluten free options. This is what i do all the time, and i find it works out fine for most dishes. (Baking is of course a different story always use gluten free options for this)

You have options don't be discouraged. Good luck!! 

 

[Ennis-TX]

I had to live in a gluten containing household for years. It is a pain to stay gluten-free in one but you can help reduce the chances of it happening by using freezer paper on your counter top, gloves, your own area for your gluten-free dedicated goods, and I found opening the drawers, cabinets, fridge, and turning on the tap before starting helped prevent me from touching the glutend knobs then the food I was fixing. Other thoughts are make your own gluten-free prep area in your room. a area with a mini fridge, a griddle/hotplate and a new gluten-free pan. a microwave, and one of those combo rice cooker/crock pot/steamers you can get new on amazon.

I do suggest meal prepping, as others said, I like to do my own steam fresh bags with a vacuum sealing marinading them in a juice/seasoning then just poking holes and zapping them in the microwave. Other options are soups, stir fiys, baked meats and veggies etc. Just get a set of new Tupperware and keep them prepped in the fridge to reheat and go, I will provide some links to some gluten-free brands, places to get them, etc. We normally suggest a whole foods only diet when starting, and to avoid processed foods. But some of these companies have all kinds of things like old stables remade gluten-free (Just think of it as what you used to eat under a different brand)

One other thing if you randomly feel fatigued it could not only be gluten , many of use develop nutrient deficiencies due to our damaged intestines. Common ones are Magnesium, B-Vitamins, Niacin, Iron, Vitamin D and a few others. You should probably have your levels tested, and talk to a dietician about building a regime of supplements you need and a diet that will work for you. But I would mainly suggest the Vitamin/B blends from Liquid health like Stress&Energy, Neurological Support, and the Multivitamin. You just a tbsp of each in glass of a beverage and drink twice a day so no pills. And Doctors Best Magnesium is a glycinated form that is really easy on the stomach,

https://www.celiac.com/forums/topic/91878-newbie-info-101/

https://www.celiac.com/forums/topic/117090-gluten-free-food-alternatives-list/

Your really not alone, many of us have gone through this and are doing much better now then we used to. I myself had hell with it and living in a gluten house for a few years. There will be your up and downs but once you get you patterns down and figure out what works for you it becomes much easier.

 

[DownWithGluten]

Hello, I understand!  People have given you good advice about the roommate thing. Yes you have to go kind of leper-mode when it comes to your food, and you will begin to feel like a leper too (this whole thing can be isolating, sorry to say. Ive been doing it for 10 years and sometimes the heartache of that last part you mentioned...knowing how much I'm inconveniencing everyone, confounded by the underlying fact that they don't really think what I'm doing is actually completely necessary, that I'm somehow choosing to make it more difficult than it has to be....all that sometimes has just made me decide it's easier to do a lot of things on my own. Particularly travel....)

So, I send you a huge hug and tears of kinship and understanding. The world outside of us truly does not understand and I'm sorry that you have to be part of this leper island club of secret woe, endless frustration...etc ad infinitum. 

Stay strong, keep safe, keep healthy, and keep coming on here and venting because we all do actually understand on here...unlike most of the rest of the world.

[egs1707]

Know exactly how you feel, it's like being hit repeatedly with a reality that feels like a nightmare you can't wake up from.

Definitely get your vitamin levels checked and ignore any doctor that says it doesn't need doing. Hopefully you'll find better health professionals than I've been subject to but it's one thing you also learn that many doctors don't really seem to know how to treat this pre and post diagnosis.

Can't say I have any surefire answers for the social and lifestyle changes as I'm still struggling with it too but you're not alone in how you're feeling.