Extremely Overwhelmed And In Denial

[ebpetite]

Hello All,

Today is my birthday and as always around this time of the year I measure my life. How am I doing... What are my goals... How are my relationships, ect... But, tonight I was struck with the reality that I had contaminated myself and that I am going to have this awful disease for the REST of my life. That led into me calling a few close friends, where I just sobbed and sobbed and sobbed about it. It was my first real breakdown since my diagnosis. I mean, I've cried about the pain and the fatigue but I've never cried about the disease and the truth that it is NEVER going to go away. I was diagnosed roughly 18 months ago. It was a blessing because I could finally stop going to the doctor all the time just to have them suggest anxiety or depression medication. I was repeatedly told nothing was wrong with me... It was so frustrating and it had me thinking maybe I was going crazy and that maybe all the pain was just in my head.

Anyway...when I get contaminated, I feel like I've been hit by a bus or that I have the worse hang over I have ever had. Its chronic fatigue and pain throughout my body coupled with brain fog and irritation. Its as if I can feel the war that is going on inside. I do, on occasion get some abdominal pain but this is not at all my main symptom and in fact sometimes it doesn't appear at all.

I live alone, have a career that requires a lot of travel and am overwhelmed. I've noticed that instead of risking getting sick... I just don't eat and end up completely exhausted and tired from not getting nutrition. Going on 4 days now without anything of real substance, it is so unhealthy and I know it. I just don't have the energy to fight this stupid disease anymore and I want to be healthy so I can exercise and have a better quality of life. But, I don't want to cook - all of the joy has been taken away from me and I can't help but worry that I'll get sick. I don't feel like I'll ever be able to accomplish this alone and am even more worried that I'll never meet anyone who can handle and support my limitations.

Not to mention... the effect it has on your social life, holidays and family get-togethers.

I am obviously in need of some emotional support and am hoping I can find it here with people who understand.

Best Regards,

ebpetite

[49erlady]

I just found out about myself just a week ago and feel overwhelmed. My symptoms are more abdominal pain so I can't imagine how you feel. All I can say is that I'm going to look at this as a new opportunity to finally get healthy for life. I hope you get the support you need and find a way to put a positive spin on it. I know I will have low points along the way and will seek out support from you and others. I know you can do it. Life is not over for us , just a different lifestyle!

[mushroom]

Oh, I AM sorry that you are going through such a crisis period and having to deal with it alone. It must be very hard to not have anyone to support you through this adjustment period. Even though it's been 18 months, it seems like the realization has just hit with a whammy We have all been there in one way or another. Welcome to our gluten free community and I hope we can be a resource for you. I am lucky to have a supportive husband who eats (and even cooks) gluten free with me, which does make a difference.

Eating gluten free requires a lot more planning and a different mind set than just buying anything you want in the grocery store and ordering anything you want off a menu. And especially in social situations it requires a whole new way of living. First thing is you have to always have in your car and in your purse something to eat to carry you through the times when your are in gluten hell and there is nothing you can eat for the next 100 miles You have to think of yourself as a gas tank that is going to need refilling, and make sure you never run out. You can't keep doing what you are doing, not eating and getting fatigued and rundown and exhausted. That is going to be a downward spiral.and lead to despair. Somehow, you must learn to take charge of your eating. Make a weekly plan of what you are going to eat and do your shopping accordingly. Do a lot of cooking on the weekend if you can. Living alone, you can cook so that you have leftovers to freeze which you can take for lunch if you have a microwave, or you can reheat for dinners during the week. A crockpot is a great idea because you can prepare the ingredients in the morning (or the night before and leave in the fridge), and then just plug it in in the morning and dinner is ready when you get home. Think whole foods of meat, fish, veg, fruit, rice, eggs and dairy if these are okay for you. Add in some Tinkyada pasta, maybe some tortillas or gluten free wraps, Udi's or Rudi's bread. Smoothies for breakfast or a gluten-free cereal you like. If you have problems with dairy, almond and hemp milk are deliciious, along with fruit. Larabars if you like them, or Kind bars, are great to have on hand for when the muchies hit. Nuts, seeds, nut butters and find a cracker that you like.

I have stayed in hotels that offer a continental breakfast. You can take gluten-free bread with you along with toaster bags that you just pop in their toaster and reuse. They will usually have apples and bananas, boiled eggs, bacon, scrambled eggs which I have found usually safe. If you can handle dairy you can take your own cereal on the road to such places - they always have milk. Lunches on the road would be difficult, I imagine. Crackers and cheese, fruit (grab some additional bananas and apples and a boiled egg from breakfast -- I have done that ). Carry a basic kit of knife, fork (have to be plastic if you are flying with carryon only), napkins, paper plates so you are prepared. If you have to eat out, take crackers or gluten free bread with you to the restaurant and order a salad if that's all that's available.

With a bit of planning it is doable. Even if you have to eat out with others, there is generally something on the menu that you can order, even if it is the dreaded steamed rice and veggies But usually these days there will be some other alternative. I guess I am saying, try to look at the glass as half full rather than half empty. It may seem like the end of the world, but really, it is possible to make the world work for you rather than against you. I am four years in to gluten free and feel a lot more comfortable about eating out than I used to. Really, it takes about a year to get used to the idea at all, and then some experimentation in learning to talk to restaurant managers, servers, chefs -- learning how to call ahead if possible, eat at off-peak times, sometimes take your own food with you, taking food to communal gatherings where you know there will be nothing for you. It is all such a learning experience and seems so overwhelming at first. But the longer you go, the easier it gets until it just becomes the way life is, I promise you. And try not to let other people make a big deal of how you eat. It is what it is, and the less fuss you make about it, the less they will. Sometimes that is the hardest thing to deal with -- the reaction of others. But as more and more of us eat this way it will become easier and easier.

Well, that's your Pollyanna talk for the day

But seriously, I understand what you are going through. It is okay to grieve for your old lifestyle, and we are here to help you through the tough times. But at some point we do have to accept the new reality and devise ways to cope with it. Here are some cyber {{{{{hugs}}}}}} for you and feel free to vent any time and to ask for help.

[dilettantesteph]

I am so sorry that you are going through this. Is is possible to reassess your career goals? There may be some easy changes that you could make which would make things easier, at least during this transition time until you have healed.

I get terribly depressed when I am glutened, so please consider that it may be depression talking and that things aren't really as bad as they seem. When you get over the glutening things will seem much better, I'm sure.

I hope that your friends were understanding. It is very hard for someone who hasn't gone through this to understand. There are many of us who don't get support from our friends and family.

(hugs)

Stephanie

[lynnelise]

I understand the frustration this disease causes. You really need to try to find safe foods because keeping nourished is important. Larabars are always in my purse when I travel so I have a quick meal on the go. Fruits are handy and portable. Raw nuts. Minute microwave brown rice is gluten free and comes in single size cups, pair with tuna and a veggies and you can make a quick meal with minimal cooking. The crock-pot is a great resource. Just dump things in and at the end of the day you have a gluten free meal with very little effort!

Happy Birthday! I hope your day gets better!!!

[Bubba's Mom]

I think most of us have had feelings like yours? This is a life changing thing for sure.

I know it's a bit harder when you're traveling. Try to keep packages of nuts/sunflower seeds with you. You can get small serving size packs. They don't need refrigeration and are covenient. I sometimes carry a baggie with mini carrots for nibbling on. They keep pretty well without refrigeration too. You have to put "fuel" in your tank to feel good.

If you are staying in hotels see if you can book rooms that have a microwave at least. You can make scrambled eggs in a coffee cup if you need to. A carton of eggs is usually under $2, so if you eat only one or two and have to toss the rest, it's still cheaper than eating out.

Have you looked into a diet drink like Ensure? It would be easy to tote something like that along with you too.

I've heard some people like a product called GoPicnic. They are meals made for traveling. Maybe look into something like that?

With a bit of adjusting you'll do better.

Happy Birthday! Maybe next year at this time you'll be reporting how great you're doing?

[PiecesOfMe]

I have a son who hasn't come to terms regarding his gluten sensitivity. We spent a fortune on doctors and tests last year who couldn't find anything wrong with him. They put him on every medicine possible which scared the hell out of me. They even gave him a prozac drug! He took it twice and said "no more". Last Wednesday he passed the one month of no gluten products then he went back on gluten. Now he is home sick. Headache, vomited at school, stomach churning, low energy. He thinks it's the flu. I don't see the flu look in him. I think it's gluten. I know he knows it's gluten. I just have to give him room to realize and understand this. He is 14 yrs old.

I don't think it is a food issue with you but a mental denial of your condition. There are lots of wonderful ready made gluten free food in the grocery stores now compared to a couple years ago. There are alot of wonderful easy recipes to make ahead. I am a full-time working mother who works 9 hrs a day and I am able to find items to eat and make during my busy schedule. This is not a death sentence, it's a new lifestyle. I can eat gluten but I choose not to because I feel so much better not putting that GMO wheat in my body. I also changed our food to organic and as much non-GMO as possible. I am slowly changing over our health & beauty aid products we use too. Most is organic and gluten free.

So far I have made gluten free red velvet cupcakes that family & friends loved and asked for the recipe. I have made and bought gluten free pizzas, gluten-free cornmeal muffins. If you go to restaurants and ask the waiter/waitress for a gluten free menu, they will provide you with items. Look on the restaurants website for gluten-free items. There are great gluten-free breads in the grocery stores now that you can make a pb & j sandwich. Here we have Fred Meyer, gluten-free Joe's, Trader Joe's that have alot of gluten-free products in them. Don't be scared, instead be adventurous! Good luck with your new adventure and take care!

[PT2B]

I'll admit it sucks. I get the abdominal pain but what bothers me the worse is the psychological. Stay strong. only you know what you go through everyday. It would be great if we can take this one day at a time but honestly you will have to plan a day ahead every time. Control your diet and you will control psychological state better. I get pretty emo and ADD when i eat gluten. i like feeling clear in my head. and caffeinated.

[sandsurfgirl]

I wish I could give you a big hug and we could have a good cry together. I'm 2 1/2 years out and sometimes I still get overwhelmed. I have a celiac child as well.

Just today I was overwhelmed. We are going on a Scouts camping trip where all food is provided, but of course we can't eat it so I have to pack all this food. Every birthday party I have to bring him his own pizza and cupcake. It's always so hard keeping it warm. I get so exhausted sometimes but no matter how tired I am I get up and make that cupcake because it breaks my heart to have my little boy left out.

You must eat!! Let us know how we can help you. Do you want some simple recipes? Simple food ideas?

Here are a few things that come to mind.

Keep lunch meat, sliced cheese and fruits and veggies on hand. You can roll up a piece of cheese in some turkey and eat an apple. Wrap the turkey and cheese in a big leaf of romaine lettuce.

There are brown rice tortillas. They aren't the greatest thing in the world, but they'll do in a pinch. Wrap up some meat and cheese in one of those. Or spread cream cheese on it and throw some sliced bell peppers and olives on there. Very good.

Keep gluten free cereals on hand so you can have a quick bowl of cereal.

If you like eggs, they are an excellent easy source of protein. Costco sells cooked bacon in a bag that you can throw into your eggs for a quick omelette.

Costco also has El Monterey taquitos that are gluten free. 20 minutes in the oven at 400 degrees and they are so good. Ate them for lunch today.

Get yourself a rice cooker. You throw in rice and water and walk away. It keeps it hot for hours and hours so you can even make some and have it for lunch and dinner.

I have a cast iron griddle that never leaves my stove. I cook my eggs on it in the morning and I cook lots of meats on there. Get those bags of frozen chicken breasts or those little pieces of chicken breast. They're great sauteed up on that griddle with some seasoning.

Get some seasoning mixes that you can throw into meat with some salt and then fry it up on a griddle or in a pan.

Here are my seasoning mixes that i love

21 seasoning salute from Trader Joes

Herbs de Provence sold in any market. It's a blend that you can put literally on anything and it tastes amazing.

Mesquite seasoning from Costco for bbq flavor

Italian seasoning- any brand you like

Fines Herbs- McCormick makes it and so do some others.

Lawry's season salt

Lemon pepper

You can take any one of those seasoning mixes above, add Lawry's and your meat will taste great.

Lawry's and Lemon pepper make the best steak you ever had. Even better if you cook it in a little butter. Got that from the Pioneer Woman.

So you make yourself some rice in the rice cooker. Fry up some meat with one of those seasonings blends and then steam some veggies and you're good.

Trader Joe's has a gluten free bread that's decent if you toast it a little. Make sandwiches.

If you list some of your favorite foods pre diagnosis maybe we can tell you how to get them or how to make them easily.