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Life Has A Way Of Playing Cruel Jokes On You...


Trudyjerry

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Trudyjerry Rookie

I'm in the middle of a total melt-down. This is some sort of a cruel, cruel joke. I enjoy food. I love cooking. I absolutely love feeding other people. I'm very creative in the kitchen. The colors and flavor combinations and textures were my pleasures in the kitchen. These days I can't stand being in my kitchen.

Take the gluten sensitivity, throw in a dairy allergy, add a sprinkle of apricot allergy, a splash of off limits passion fruit juice, mix it all together and top it with a possible soy intolerance and you've got me.

I've been gluten free almost four months now and I'm still angry and feeling very much betrayed by my own body. Please tell me that this does eventually get easier, that I will be able to enjoy spending time in my kitchen again. It's not that I haven't been enjoying cooking gluten and dairy free but I want my old life back. I've had to turn my life upside down. I've turned my kids' lives upside down. I've turned my husband's live upside down and none of it is fair.

All I want to do is stomp my foot like a three year old. I want to throw a temper tantrum.

Life plays cruel, cruel jokes on you...


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Christine0125 Contributor

So sorry you're feeling down. I keep telling myself this will become the new normal in due time for not just myself but my family as well. I'm also waiting for that day because I still seem consumed by it.

bartfull Rising Star

I never liked cooking and now I HAVE to. And I'm not good at it. So on top of not being able to eat the foods I used to love, now I'm stuck eating my own lousy cooking. Talk about a cruel joke! You could almost say it's a tasteless joke.

OK, sorry. I don't know what to tell you except that you'll get used to it. My Dad had severe asthma, and as the years went on he could no longer do woodworking (swadust), or small engine repair (gas fumes) or a lot of the physical things he used to love to do. He told me each time he lost something it freed up time to learn something new. He was always upbeat and happy.

I know I'll never be as good a person as he was, but he sure taught me a lot.

anabananakins Explorer

I'm sorry you feel so upset. It does get better, truly. I've been gluten free 2 years now.

mommida Enthusiast

You may be the person to develop the best gluten free food ever. Your love of cooking and entertaining does not need to end, just needs to be allergen safe. ;)

Hate to say it, this isn't that bad.

Googles Community Regular

I am sorry you are having such a hard time. I went through this when I was first diagnosed. I was so angry and felt like my body betrayed me. It does take time to adjust. Realize that in getting this diagnosis you go through a period of grief. Anger is one of the parts of grief. You will find foods that you enjoy cooking and like. I thought I would never find anything I ever wanted to eat that wasn't bland. But I have. It takes time to learn how to cook gluten free. Give yourself time to grieve. It is a major loss. Then work on finding things that you can create that you love.

beebs Enthusiast

Yeah, It does get better. I consider myself a total foodie, not just cooking but eating out ALL the time, new cafes and restaurants and never a care in the world. It is hard, and I still have that horrible feeling about it. But it gets better. And now if I stumble on a great cafe etc that has a gluten free menu I just have the best time. You start to appreciate the little things more. You will get back into your cooking and eventually you won't even notice it anymore.


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tuxedocat Apprentice

I hear you. i am very much a foodie and much of my social life revolved around eating out, as I don't have the resources to entertain and I'm too far for anyone to drive. Most of my friends live 40 miles away, so we have to meet midway which means - meeting at restaurants.

The good news is that it's easier if you DO like to cook, than if you don't. It's even easier if you like to experiment in the kitchen. I transitioned away from bread and pasta being any kind of meal centerpiece a long time ago, and pretty much can make and enjoy anything I want to eat in my own kitchen. It's eating out that is the big suck because it makes it so hard to travel or socialize.

Victoria6102 Contributor

I know how you feel. I've adjusted to where most of the time I'm pretty positive about my diet. But every so often I'll get a week where I feel so angry and upset, missing how life used to be, feeling like I want to just curl up in a ball and cry. basically, I have a pity party. And after all I've been through in my short life, I think once in awhile I deserve to feel a little bad for myself , don't you?

I know people say "well you could be worse off, like having cancer or sickle cell anemia" well I'm very thankful to not have those things. But not comparing celiac to any other disease, just how bad it is in itself, it's a pretty awful disease. Some people it effects in worse ways than others. Sure, maybe I don't have cancer, but I've spent the last 7 years of my life feeling like I could throw up at any second, chowing down saltines to try to make myself feel better, when in reality saltines were the very thing making it worse. The last few years have been complete misery. Then you finally get an answer to why you're feeling so bad...and they tell you have to give up a HUGE food group and can never eat it again unless you want to damage yourself. And it's not just giving up gluten that's so hard. It's dealing with all the idiots out there who have no clue about Celiac or gluten and make your life miserable because now you're not "normal". It's all the time you have to spend researching to make sure you don't get sick. It's the thought that there's no hope for a cure, for you to ever get rid of celiac, atleast not in this generation. And the thought that no matter what you did you couldn't have stopped yourself from having it, and that no matter what you do, you will always have Celiac.

Sorry didn't mean to be negative....but all that to say, I know how you feel. I know it is tough and I KNOW it does NOT seem fair. But it WILL become easier and you will start to feel less and less upset about it. Like me, maybe you'll have a time every once in awhile where you feel upset again. But those times will become fewer and fewer . It will get better!

Trudyjerry Rookie

Thank you all for your kind responses. I truly do appreciate them. Yes, I guess I am wallowing in self-pity a bit, which sets me off yet again because all I can have is a freezer pop and what I really want is a pint of Ben and Jerry's.

I'm sure this will get better but I'm just not seeing how right now.

Thank you all again. At least all of you understand because my friends and family certainly don't.

kareng Grand Master

Thank you all for your kind responses. I truly do appreciate them. Yes, I guess I am wallowing in self-pity a bit, which sets me off yet again because all I can have is a freezer pop and what I really want is a pint of Ben and Jerry's.

I'm sure this will get better but I'm just not seeing how right now.

Thank you all again. At least all of you understand because my friends and family certainly don't.

Hey! Try these coconut milk ice creams. So yummy! And I can eat real cow juice ice cream but we still get these.

Open Original Shared Link

tuxedocat Apprentice

Hey! Try these coconut milk ice creams. So yummy! And I can eat real cow juice ice cream but we still get these.

Open Original Shared Link

I don't to my knowledge have any issue with dairy and yet I eat coconut milk ice cream because it is SOOOOO good!!!!! ZOMG

I especially love Larry & Luna's Coconut Bliss.

Fairy Dancer Contributor

Sounds daft but I dance rather than eat most of the time when I am pissed off. I find the movement very relaxing and invigorating at the same time. If I do need to tuck into something nice to eat, being paleo, I go for a piece of one of my favourite meats and some nice vegetables. I like snacking on king prawns at those times too.

It does get easier but then again I do the paleo diet which fascinates me right now, meaning I kind of enjoy it, so I guess I adapted easily to it and don't really miss my old diet at all. Mind I go to extremes as I have also stopped using shampoo and chemicals on my hair (which is starting to restore its natural curl...something that no styling product has ever been able to do and keep it that way) and I also grew my armpit hair back as I wanted to see what it felt like to be a bit more natural.

I kind of like it. Although people don't have to go that far obviously lol.

I don't eat any dairy, legumes, grains or processed foods. My fluid intake consists of mostly mineral water with the occasional cup of black unsweetened coffee. I don't consume processed sugars or any kind of artificial sweetener. I basically keep my diet clean...uber clean but there are plenty of foods to chow down on: Meats, fish, poultry, nuts, vegetables, small amounts of fruits...

Nature provided many great foods! I like to tuck in.

farmer jennings Newbie

I feel for you. It will get easier as time goes by. If you can just get the whole family on a gluten-free diet it will be easier for you.

Start with pasta and sauces. With both of these and veggies alone you can make numerous meals from lasagna to spagetti. Yes you can use chicken in spagetti if you cant tollerate beef, you can leave it out and just add in more veggies too. You will master this fast, then move on to soups and before you know it you will be having fun creating . As for ice cream..I now am lactose intollerant and even with the lactase pills from costco I cant have it. But Breyers vanilla was ooooohhhh so goodwhen I could have it and gluten-free!

For cheese I use lamb chopper. Goat taste too much like barnyard. I know that if I buy a whole 10-lb cheese roll from our Whole foods Market I get 10% off the whole roll.So I save up and buy it when I can. I am trying my hand at making ice cream with coconut milk, its not as creamy but quite good.

love2travel Mentor

I'm in the middle of a total melt-down. This is some sort of a cruel, cruel joke. I enjoy food. I love cooking. I absolutely love feeding other people. I'm very creative in the kitchen. The colors and flavor combinations and textures were my pleasures in the kitchen. These days I can't stand being in my kitchen.

Take the gluten sensitivity, throw in a dairy allergy, add a sprinkle of apricot allergy, a splash of off limits passion fruit juice, mix it all together and top it with a possible soy intolerance and you've got me.

I've been gluten free almost four months now and I'm still angry and feeling very much betrayed by my own body. Please tell me that this does eventually get easier, that I will be able to enjoy spending time in my kitchen again. It's not that I haven't been enjoying cooking gluten and dairy free but I want my old life back. I've had to turn my life upside down. I've turned my kids' lives upside down. I've turned my husband's live upside down and none of it is fair.

All I want to do is stomp my foot like a three year old. I want to throw a temper tantrum.

Life plays cruel, cruel jokes on you...

Believe me, I know exactly where you are coming from. I was there myself when I was diagnosed a year ago. The first few months were very sad, especially when I made bread and so on. And I am the biggest food person there is - I dream of it. Think of it constantly. Write recipes while awake and asleep. Heck - I teach cooking classes and am a professional recipe tester! My husband and I have traveled to Europe to food festivals. You should see my extensive culinary library of nearly 500 books.

Anyway, one day you will wake up and realize that it truly can be worked around. You can be even more creative than ever before. Experiment with new grains and ingredients and flours. I have about 20 kinds of flour in my freezer to play with. Now all the cooking/baking classes I teach are gluten free. It was pathetically sad to begin with but now it truly is ok. Travel still is the hardest for me. We just came back from Croatia and Italy and sometimes it was a challenge.

So, get back in your kitchen and re-think things. Be inspired and create amazing dishes that are naturally gluten free. Pull out that appliance that you haven't used for awhile.

You know, it really can be done. Head on over to our What's for Dinner thread and see the yummy things we create! Do not ever settle for second best. Do not bother eating out at chains. You deserve to cook the best you possibly can and eat as good or better than those who eat gluten. Please believe me - I have been there and have succeeded!! And I did not even get sick when glutened so I did not have that extra motivation to keep me on track. But I have. And so can you. You WILL do this! :D

GFinDC Veteran

Don't get too upset about the cooking oppurtunites until you spend some time reading the recipe section of the board. Celiacs do eat, and there are lots of options of different things to try. Flourless peanut butter or chocolate cookies are ok if you like treats. There are long threads on gluten-free bread baking, and many threads on snack ideas etc. And there are books on gluten-free cooking too. It may be different, but it is still cooking. You just may need to be a little more creative than the next cook.

Some threads for lite reading:

FAQ Celiac com

https://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101

What's For Breakfast Today?

What Did You Have For Lunch Today?

What Are You Cooking Tonight?

Llamamama Newbie

I so remember 4 months into eating this diet that was robbing me of my one real passion (former restaurant owner.. I was thisclose to getting a HAHAHAHA vegan seitan product into my local Wholefoods that I spent 7 years developing). I get it. The ortho anorexia.. the paralysis.. the why me? The why am I not getting more results? Is it something else? WHAT THE HECK? WHY DOES IT HAVE TO BE THIS HARD? I reacted to nightshades, garlic and onion the first 9 months. Im italian.. dairy, grains, starches, sugars, lotsa veggies, garlic and onions? not fair

I can kinda tolerate a touch of cooked garlic now.. hallelujah. Im almost a year in.

its a slow process.. BUT at about the 9 month mark i took it as a complete challenge and in the process ive completely changed everything about how I eat. Im so much healthier.. my recipes now are really full of natural beautiful colors and flavors. I dont rely on my old stand bys.

Oh, and I make a mean coconut milk custard ice cream makes you wanna slap Ben and Jerry for feeding you that crap ;)

Trudyjerry Rookie

To all who replied to my initial post,

I truly appreciate all of your input and support. I do feel a little better, although some days are still hard. I'm starting to think that some of my emotional aspects may have something to do with the mess that I'm on.

Thanks again. I do like knowing that there is at least one place that we can all turn to.

Angie

JNBunnie1 Community Regular

Oh, and I make a mean coconut milk custard ice cream makes you wanna slap Ben and Jerry for feeding you that crap ;)

Recipe need be forthcoming.

genieb Newbie

My husband helped get me through the "there is nothing left to eat and I'll never be able to cook again" phase by making a list of foods I could still eat. Even with other restrictions there were still many things left that I could eat. I started out slow with stir fry and lots of salads, but now I can make just about anything gluten free. Focusing on what I can eat rather that what I can't is what helps keep me positive still. Now, five years later I'm as good a cook as ever, in fact I think I'm better. I still love to entertain and no one knows they are eating gluten free.

It gets a lot better once you get through the grieving process. I actually took on gluten free baking as a challenge -- I love a good challenge.

KMMO320 Contributor

I am so sorry. I just saw this thread, I just posted something similar. I am angry and frustrated and sad, and I cant go gluten-free until this Friday (Endoscopy).

I hope with the help of everyone here I can get through what is to come.

Bubba's Mom Enthusiast

I'm in the middle of a total melt-down. This is some sort of a cruel, cruel joke. I enjoy food. I love cooking. I absolutely love feeding other people. I'm very creative in the kitchen. The colors and flavor combinations and textures were my pleasures in the kitchen. These days I can't stand being in my kitchen.

Take the gluten sensitivity, throw in a dairy allergy, add a sprinkle of apricot allergy, a splash of off limits passion fruit juice, mix it all together and top it with a possible soy intolerance and you've got me.

I've been gluten free almost four months now and I'm still angry and feeling very much betrayed by my own body. Please tell me that this does eventually get easier, that I will be able to enjoy spending time in my kitchen again. It's not that I haven't been enjoying cooking gluten and dairy free but I want my old life back. I've had to turn my life upside down. I've turned my kids' lives upside down. I've turned my husband's live upside down and none of it is fair.

All I want to do is stomp my foot like a three year old. I want to throw a temper tantrum.

Life plays cruel, cruel jokes on you...

I'm gluten-free, soy, dairy, peanut, yeast, corn,(but not corn starch), MSG free, and the cruelist part is, I hate to cook! :blink: The only grain I eat is brown rice.

Sometimes I feel angry. Most of the time I'm around other people eating things I can't have I feel frustrated too. I've found as time goes on I'm dealing with it better though. If only they would stop all of those food commercials while I watch TV in the evening it would help. Reading magazines with page after page of pics of foods I can't have is maddening too. I haven't renewed my subscriptions.

At least you like to cook. With some experimenting I'm sure you'll come up with some great foods!

Please know you aren't alone. Your frustration/anger is perfectly valid.

Trudyjerry Rookie

I have actually been enjoying my food. It's not so much that. I enjoy cooking. And actually a lot of my cooking is done flying by the seat of my pants. I usually can't recreate any one dish that I've made because I can't remember what I put in it but believe you me, it was to die for. I made oven roasted beef ribs, herbed vegetables, with a side of polenta. It was absolutely amazing. Don't ask me about any of it because I can't remember.

My biggest problem is actually breads and desserts. I love my sweets. Yes, I'm pre-diabetic and I need to cut out sugar but I love my sweets and I can't help it. But foremost, I'm German, I love my breads, I have to have my breads. I love my beers, I can live without those but I have to have bread. Although, I have learned a corn tortilla wrap will work in a pinch.

Having to give up the dairy has been a huge thorn in my side. I love my ice creams. Well, not so much the ice creams as the gelatos. Then, there is cheese. I love cheese and we're not talking Kraft singles. I mean Brie, Muenster, Feta, Quark, Mascarpone, etc...

You have to understand I left German to follow my husband to the US, which I willing and loving did but in doing so, I gave up a lot. It took me a long time to find good substitutions for some of the things that I missed. Okay, so I can't get a good Italian gelato in the town that I'm in but I can make a mean mascarpone gelato at home that goes heavenly with a few of my homemade German cakes. Unfortunately, that is all off limits now and it's those things that make me want to just scream.

GFinDC Veteran

Ok, here we go. Friday nights used to be two Marie Calendar's turkey pot pies and Sam Adams Cherry Wheat beer for me. Or Blue Moon Pumpkin Beer. Or pizza and beer. Or pretzels and beer. or etc. etc.. But that was then and this is now. You can scream if you want and it makes you feel better. We don't mind. Might be nice to get some ear plugs for the neighbors though. :D

Gluten-free can be a big change, and it takes time to adjust. But people can adjust to change, even if they are grumpy when having to do it. Actively looking for alternatives and researching different food options can pay off in making the adjustment smoother. There really are a lot of alternative foods to eat, it just takes a bit of effort to learn about them.

If you search the recipe section and can't find a recipe for a certain food you like, you can start a thread asking for ideas. Someone will probably have a recipe idea for it.

Green's Belgium Beer is gluten-free, and there are others also. Here's a scream in sympathy for you tho. "Arrgggh!' :D

cyberprof Enthusiast

Trudyjerry, it is not fair and it is a challenge. I'm gluten-free but both my kids need to be gluten-free and DF and my daughter needs to be Soy-free.

Have you looked at the Gluten-free Goddess's blog? Karina has a joy about cooking and she has multiple allergies/intolerances in addition to celiac. Her deserts are wonderful, especially the flourless chocolate cake, brownies and carrot cake. My kids like the carrot cake better than my old gluten recepie and same with her dark chocolate brownies.

And the Gluten-Free Girl's blog is all about celebrating what you can have instead of wishing you could have what you can't. She isn't DF/SF but has good ideas and pretty photos.

You can easily google these or let me know and I'll send you the link.

Enjoy!

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Avoid ultra processed products, high in seed oils, refined grains, and sugar. Not just gluten can cause a leaky gut. Fructose, alcohol, egg white lysozyme, emulsifiers, added gums, the list goes on. “8. is cutlery from dishwasher safe if there are stains? Stuff like knives is used for cutting gluten bread or fork for noodles etc. I often see stains which i dont know if it’s gluten or something else but our dish washer doesnt seem to make it completely clean.” If in doubt have your own cutlery set, plate and dishes etc. for your sole use that you handwash yourself. Carry a camping fork/spoon set when out and about if needed. “9. I wash my hands multiple times while preparing food. Do i need to do the same when touching my phone. Like if i touch the fridge handle, I wash my hands then touch the phone. I dont eat while using my phone but i leave it on my bed and pillow and my face could come in contact with where it was.” That’s a classic OCD fear. Nothing to do with gluten as such. OCD brain is using gluten as the excuse here. I personally have the habit of using a cleansing wipe or dust cloth on my phone, nightly, that eases this sort of worry. For example a micro fibre dust cloth will do the trick, keep one on your nightstand? They are antibacterial as particles cling to the cloth. “10. Do i need to clean my phone or laptop if theyve been used by people who eat gluten? Even if no crumbs fall onto my keybaord, i mean because of invisible gluten on their fingers.”  NO. But again these OCD thoughts are hard to argue with. If in doubt, just a quick wipe with a cloth daily should suffice. Normal cleanliness practice. But if you don’t, or forget, don’t sweat the small stuff. “11. Does medication/supplements have to be strictly glutenfree? One company said they couldn‘t guarantee if their probiotics don’t contain traces of gluten.” Better if it is gluten free, yes. “12. I had bought supplements in the past, some of them say glutenfree and some of them dont(like the brand „NOW“ from iherb). I bought them and used them when i wasnt washing my hands so often, are they still safe? As I touched and opened them after touching door knobs, water taps etc. It was like a year ago when i bought those and even though i was eating gluten-free, I never worried about what i touch etc.” Still safe if do not explicitly contain gluten grains / derivatives AND if within the use by and use within dates. “I know this post is long. I’m just extremely overwhelmed. I’m trying to protect myself from long-term health damage, but the OCD is destroying my quality of life, and I honestly don’t know what’s a reasonable level of caution anymore.” Really hope these replies to your questions help. Just remember, in the midst of overwhelming thoughts and darkness under OCD clouded vision, the light and sunshine is always shining above. Take a moment or two when you are able in each day - even if it’s last thing at night - to meditate. Focus on something that you enjoy and appreciate. Or sit in a quiet space and try to relax and tune in to your higher self. Ask for guidance and soothing from your guardian angel. Over time it works but don’t worry if your brain is anxious. Eventually it will quieten down some. Try to focus on a real food, nutrient dense and naturally gluten free diet, this will help your anxiety and future health in the long run. Please eat real food - not cornflakes and sandwiches. Eat a steak, eggs or fish for example. Gluten exposures may happen, but don’t sweat it, dust yourself off so to speak, and carry on with a natural gluten free diet as best you can. Own your OCD don’t let it own you! Similarly, when it comes to a gluten free diet for celiac disease, own the process, don’t let it own you! You’re 18. That’s great. I’ve been managing OCD since childhood (in my 40s now. Many years of research, trial and error so to speak. Diet makes a difference. To quote Doc Brown to teenagers Marty and Jennifer, ‘ …your future hasn’t been written yet. No one’s has. It’s whatever you make it. So make it a good one.’
    • maryannlove
      Unfortunately not going to be able to let you know how Amneal is working because I still have almost 3 month supply of Mylan.  Had annual appointment with endocrinologist last week (though get scripts for blood work more often) and since was on my last refill, she sent new script to pharmacist.  Staying on my Mylan until it's gone.  (I tend to build up a supply because after trying a couple of endocrinologists for my Hashimotos, one finally got my thyroid regulated by my taking only six days a week instead of adjusting the strength which had me constantly up and down.  Will be forever grateful to her.  Apparently high percentage of folks with Celiac also have Hashimotos so all this relevant/helpful on Celiac.com.    
    • KimMS
      Thanks for sharing this! Have you started taking the Amneal? I'm curious how it's going for you. My pharmacy gave me the option of Accord, Macleod or Amneal. I didn't realize that Amneal was formerly Lannett, or I might have chosen that one. However, I did read some anecdotal reports that some people had side effects with Amneal, so I chose Accord. I have been taking it for 3-4 weeks and the past 10 days I have developed extreme fatigue/sluggishness, joint pain and some brain fog. I don't know if it is the new levo med, but nothing else has changed. Has anyone else taken Accord levo? Any issues? It seems to fall into the "no gluten ingredients, but we can't guarantee 100%, but it's likely safe category." I'm wondering if it is worth switching to Amneal or at least getting my thyroid levels checked. If the med is causing my symptoms, I'm guessing it's not because of gluten but maybe the potency is different from Mylan and I need different dosing. Accord was recalled for lower potency, but my pharmacist said the pills I have were not part of that lot.  
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