Just So Tired Of It All

[BitterGrad]

I have been gluten free for 3 years now. I have been seen at the Celiac Center at University of MD. The doctor put me on a very strict diet of fresh meat, fresh fruit, fresh veggies with as little grains or processed foods as possible. Needless to say, this restrictive diet is very hard to maintain. I often cheat and will eat processed gluten free foods and develop horrible rash. I also at times discover new and unknown sources of gluten. Accidental exposure to gluten means I get horrible GI issues for about a week and horrible rotational vertigo for 1 to 2 days after. (As a side note: rotational vertigo for 2 days makes me basically incapacitated and I have a 2 and 4 year old.)

I am so tired of it all. I am sick of the social isolation. EVERYTHING social involves food. My children are in different preschools and both schools have pizza night and food oriented parties. I am so sick of going to these events because I have to lug food we can eat (my 4 yo has Celiac too). I hate having to explain Celiac and gluten free. If one more person tells me "it's the new FAD diet," I am going to scream. Yes, I love spending $7 on a loaf of bread for the FAD of it. They just don't seem to understand, it is a medical diet.

I loathe my mother-in-law, who is not from the US, who feels Celiac is an imaginary disorder. She constantly tries to feed my son gluten containing items. She also bakes pies and is a cake decorator so her house is TOTALLY cross-contaiminated. After many years of getting ill while visiting, I said no more. She can come visit us. I just cannot travel anymore. The risk of exposure is too great.

Obviously, I am just ranting! I wish I could have a pint of Guinness and a decent pizza.

[MitziG]

I think we all can relate. Sometimes it IS just so frustrating because it seems like life revolves around food!

But you HAVE to change your attitude. And you HAVE to stop cheating!

How can you expect others to take your diet seriously if you don't? If you are cheating, then you are treating it like a "fad" diet. Others see that. And it makes it difficult not only for you, but for the rest of us who have people always tell us, "so and so has celiac but they cheat a little!" And...your 4 yr old is one of us. Would you let her/him eat a "little bit" of rat poison because you do?

So...I empathize with you, we all do. But I am gonna be a little harsh and give you the kick in the tush I think you need....GROW UP!

Yes, celiac is a flaming inconvenience. So what? So is cancer! So is war! So is poverty! So are a million other things that complicate life- and the majority are far worse than having to give up processed food that is garbage anyway!

As long as you continue to cheat, you are never going to reap the benefits of being WELL! Ditch the gluten-free processed foods as well- they are garbage and you don't need them. Start feeding yourself and your family the way we were iintended to eat_ with real food!

[ciavyn]

:sigh: I feel you. I really do. I've been having a pity party as I got glutened over four months via lotion, finally started to feel better (again!) and got glutened at a gluten free restaurant. It's been four weeks, and I still have symptoms. So miserable and vitriolic? That would define me some evenings when I get home and have to cook instead of going out and enjoying some relaxing time my S.O.

But

[missy'smom]

I have been gluten free for 3 years now. I have been seen at the Celiac Center at University of MD. The doctor put me on a very strict diet of fresh meat, fresh fruit, fresh veggies with as little grains or processed foods as possible. Needless to say, this restrictive diet is very hard to maintain. I often cheat and will eat processed gluten free foods and develop horrible rash. I also at times discover new and unknown sources of gluten. Accidental exposure to gluten means I get horrible GI issues for about a week and horrible rotational vertigo for 1 to 2 days after. (As a side note: rotational vertigo for 2 days makes me basically incapacitated and I have a 2 and 4 year old.)

I am so tired of it all. I am sick of the social isolation. EVERYTHING social involves food. My children are in different preschools and both schools have pizza night and food oriented parties. I am so sick of going to these events because I have to lug food we can eat (my 4 yo has Celiac too). I hate having to explain Celiac and gluten free. If one more person tells me "it's the new FAD diet," I am going to scream. Yes, I love spending $7 on a loaf of bread for the FAD of it. They just don't seem to understand, it is a medical diet.

I loathe my mother-in-law, who is not from the US, who feels Celiac is an imaginary disorder. She constantly tries to feed my son gluten containing items. She also bakes pies and is a cake decorator so her house is TOTALLY cross-contaiminated. After many years of getting ill while visiting, I said no more. She can come visit us. I just cannot travel anymore. The risk of exposure is too great.

Obviously, I am just ranting! I wish I could have a pint of Guinness and a decent pizza.

I feel every bit as miserable, frustrated, tired etc. about all this as you. I won't whine here since I do plenty of that here and there from time to time.

Since going gluten-free 5 yrs ago I have been dx with adult onset type 1 diabetes and 26 food allergies. Yes, I totally get that everything revolves around food! and dishes!

You may not be in the mood at the moment but I'll share some things that have helped me. Do they color my world rosy? No. I still get frustrated etc. plenty often but sometimes they get me from point a to point b, keep me going forward and sometimes help me feel more positive.

Someone on another forum suggested that I reward myself for trying x number of new recipes when I was stuck in a rut and needed more variety for health/allergy reasons. I've done that and my reward was a non-food thing.

I tote my own meals everywhere so I joined an online bento group where you take photos of your meals and post them. I used to be an avide baker and loved to make and share but no longer do so I put that energy into bentos instead. It was a creative outlet that provided me a nice appealing meal. There's a link on my profile to the group I joined. There are others out there too. There are several for gluten-free and allergen-free and even an ugly bento group for those who don't get that artistic with it. I don't post much these days but it kept me going for a while.

Maybe use this as an excuse to invest in some neat, but useful kitchen gadget or gourmet ingredient. I have so much off the menu so I splurged and paid something like $14!for a bottle of lemon olive oil last summer. Yes, it was pricey! but my food is simple and it added a lot of flavor.

[MitziG]

Just want to apologize- I misread your post and thought you were cheating on the gluten-free diet- hence my not so kind tone. Now I see you meant "cheating" by eating some processed foods- but gluten free ones. Which should be fine but still make you sick.

I am so sorry. I have little patience with people who refuse to comply with the diet and whine that it is too hard, and I mistook you for one of them. General whining by those who ARE in compliance and still feel like crap though? THAT I feel for! So please, whine, rant and vent away- then suck it up and remember you aren't alone in this battle. Everyone here would love to just be able to eat without thinking so darn hard about it!

But we can't, and that is our little burden. But it is a little burden compared to many. I hope you keep working at what your dr recommended and get some relief soon. As someone who was miserable their whole life, I am so freaking grateful to finally feel good that I would give up all food to stay that way!

[tarnalberry]

Edited: I was too harsh (frustration of trying to put a toddler down for a nap... /eye roll)

Improved summary: even after 10 years, sometimes it sucks. Having to deal with the kid aspect makes it even more exhausting. It's nice to whine sometimes, and have someone hear you, but nothing fixes the problem until you figure out your own solution. And so, I hear you and sympathize, and good luck figuring out how to move forward.

At the least, consider being an active agent of change to move the kids events away from food; it'd be healthier for them anyway.

[1974girl]

I am going to give you permission to whine. I have an 11 yr old celiac. I have vented here only to be told that I needed to get into counceling. But I don't. I just need to be heard. It is hard to take a child's food everywhere. It is even harder to deal with the emotions that come with them feeling different. I don't tell my child to grow up or suck it up. I tell her that I wish I had it instead of her but that we have to do this thing. Moses got tired of holding up his arms (as long as he held them the battle was won)so Aaron and Hur held them up for him. Sometimes, we just need an Aaron or Hur to old up our arms so we can keep winning. I'll hold yours up because today I can. Tomorrow you may have to hold mine up.

[butterfl8]

Does it absolutely SUCK that you have to take your own food everywhere, and explain why? YES. A thousand times YES. But it is also your choice to restrict your participation, and thereby, your kid's involvement, due to food. My husband was an active alcoholic, and because I was an undiagnosed celiac at the time, the restriction in our social lives was fine by me. He wanted to stay home and drink, and I was too tired to bother. Now? I mourn for the freindships I've lost since then due to that, and try my hardest to maintain the ones that we managed to keep, despite the fact that we weren't there for them. I usually eat before, take my own food, and gladly explain so that I can keep these people close. I pray that the people you explain Celiac to are nice enough to understand, as some of my friends were. Celiac SUCKS when it comes to social stuff. It is totally all about food. But I try to remember that I need to work to develop/maintain these friendships. And way to go! Keeping your child's health in mind is awesome--be your advocate as well as thiers. But yea, this diet can be horrible, at least socially. Just wanted to let you know you're not alone. Probably all of us are with you there.

-Daisy

[Victoria6102]

I am going to give you permission to whine. I have an 11 yr old celiac. I have vented here only to be told that I needed to get into counceling. But I don't. I just need to be heard. It is hard to take a child's food everywhere. It is even harder to deal with the emotions that come with them feeling different. I don't tell my child to grow up or suck it up. I tell her that I wish I had it instead of her but that we have to do this thing. Moses got tired of holding up his arms (as long as he held them the battle was won)so Aaron and Hur held them up for him. Sometimes, we just need an Aaron or Hur to old up our arms so we can keep winning. I'll hold yours up because today I can. Tomorrow you may have to hold mine up.

What a great analogy! I love that story:)

Reading your post made me cry! I'm glad you don't tell your daughter to suck it up. My mom doesn't tell me that either. Sometimes, encouragement doesn't mean you have to pretend everything is ok (when it's not!), but rather it's telling each other that we can get through this, we can help eac other, we can be an Aaron and a Hur. We are a special group of people, with a disease that requires strength and devotion and commitment to your health. We are here for each other...this forum is where we encourage each other. Because despite any differences we may have, one thing brings us all together, Celiac! Hang in there, we are here for you. I understand how difficult it is for you, I know we all do! It's a tough life, not as tough as it could be, but tough nonetheless!

[tuxedocat]

Have you considered joining a raw food club or meetup? The food is typically grain free, though you will still have to take your chances with food prepared in someone else's kitchen.

[BitterGrad]

Thank you for the replies. I was in a very bad mood after back-to-back pizza nights for my children's preschools. We ended up not going because I am not buying a pizza we cannot eat and also bringing a gluten free pizza that tastes horrible! If anyone knows of a good gluten-free pizza, let me know. Homemade Pizza Company is good but I get cross contamination.

And to the previous poster, I don't cheat and have gluten. Sorry I didn't make that clearer. I cannot take care of my kids if I have gluten. In fact, I can't even get out of bed unless you count laying on the bathroom floor vomiting and sweating profusely from the rotational vertigo. The Celiac Center at U of MD put me on a very strict diet. I am to avoid even processed gluten free foods and other grains. It just gets old.

I just need to suck it up, I know. It just gets very difficult sometimes.

[srall]

Looks like you are feeling better, but I was just going to agree. I am two years in and I try to be really strict with my diet. I also feel best on no processed/rice as only grain diet. And my daughter is on the same diet. I sometimes think I can't spend one more minute in the dang kitchen either making something from scratch or cleaning it...3 times a day at least. Everything else in the house suffers. And I love to cook now too, but this is relentless. And even though most days it's okay and I'm grateful for everything...I too just have days where I think I'm going to lose it.

So...don't feel bad at all for having a little break down. It's a tough deal, especially when you can just NEVER make yourself a stupid sandwich and get on with your day.

[MitziG]

Again, I am sorry for misreading your post and thinking you cheated!

As for gluten-free pizza- I use Gluten Free Pantry french bread/pizza mix. It makes a decent crust and I pile on yummy toppings. It isn't as good as Pizza Hut, but the kids gobble it up and it definitely satisfies the "pizza cravings"!

I am so sorry you are still miserable and hope you get relief soon!

[dani nero]

Thank you for the replies. I was in a very bad mood after back-to-back pizza nights for my children's preschools. We ended up not going because I am not buying a pizza we cannot eat and also bringing a gluten free pizza that tastes horrible! If anyone knows of a good gluten-free pizza, let me know. Homemade Pizza Company is good but I get cross contamination.

And to the previous poster, I don't cheat and have gluten. Sorry I didn't make that clearer. I cannot take care of my kids if I have gluten. In fact, I can't even get out of bed unless you count laying on the bathroom floor vomiting and sweating profusely from the rotational vertigo. The Celiac Center at U of MD put me on a very strict diet. I am to avoid even processed gluten free foods and other grains. It just gets old.

I just need to suck it up, I know. It just gets very difficult sometimes.

Awwr.. why is your pizza sucky-tasting :-( That's no good! There are so many amazing recipes out there. Have you checked around the forum for easy pizza recipes?

Being gluten-free doesn't mean food needs to taste bad. I do understand you suffering for having to be away from even gluten-free processed foods since I'm in the same boat right now, but it does get easier to forget about the stuff in time when you're feeling healthier and happier. Just keep in mind that your body-type just can't handle the processed stuff, which is why you're off it for now.

[JNBunnie1]

Try Against The Grain frozen pizza. The regular is good, but the white pesto pizza is just outstanding. And I'm a wicked food snob! They also sell bare crust, which would be better I think if you wanted traditional pizza.

[IrishHeart]

Try Against The Grain frozen pizza. The regular is good, but the white pesto pizza is just outstanding. And I'm a wicked food snob! They also sell bare crust, which would be better I think if you wanted traditional pizza.

I was going to post this same suggestion. It IS very good (and this is coming from another wicked "foodie" --someone who ONLY liked her own homemade pizza dough-- even BEFORE DX. Damn, that was a GREAT crust )

Also, CHEBE mixes are grain free. Try those maybe?

Have a Green's or Bard's and tell yourself it's a Guinness.

As for venting, pouting or whining? hell yes, everyone is allowed.

Knock yourself out!!

Then, it's time to move on, sweetie!!

[woodnewt]

I have been gluten free for 3 years now. I have been seen at the Celiac Center at University of MD. The doctor put me on a very strict diet of fresh meat, fresh fruit, fresh veggies with as little grains or processed foods as possible.

I am so tired of it all. I am sick of the social isolation. EVERYTHING social involves food.

I can totally relate. I'm on a very strict diet as well - fresh meat, some veggies, minimal fruit, no processed foods and absolutely no grains. Practically everything social here involves food as well. It's really looked down on to not be able to eat what everyone eats, it's just part of the culture. I never really fit in well to begin with here, so the food restrictions just put in the final nail to completely cut me off. Only thing really keeping me going right now is school and the prospect of moving to the states for grad school.

[Hanshotfirst]

I agree with the OP. Have celiac. Been on the celiac diet for 6 years now and it is so isolating. Am I healthier? Yes. Am I happier? No. Following the celiac diet has conclusively made me less happy, less connected and and less excited about life. Before I was diagnosed, I was freaking happy even if I didnt feel so well all the time. But I happily ate pizza with some pals, happily went to my mother's for dinner. The social isolation is worse than the disease. I am strongly in agreement with the OP that it just isn't worth staying on the diet. Food connects people. Celiac is no fun, but I would much rather eat pizza, connect with my family and not be in a constant state of fear about celiac. This diet is not the solution. We really need to find a way to treat it that allows people to continue eating gluten (even if the treatment is only able to minimize symptoms). I bought into the whole diet thing for six years, but I've changes in ways I do not like as a result of being on this diet.  

[Midwitch]

This looks like an old thread but I guess it can be revived. I am not coeliac myself but two of my kids are and we are only just gluten free for 10 days. Nevertheless I can see how socially isolating it can be. My kids are 17 and 12.  The younger one is the sickest. Right now he can only manage 2-3 days at school per week due to his exhaustion but I nearly cried today when he told me his friends jokingly called him a loser because he couldnt eat meat pies with them any longer. They waved it under his nose and taunted him and he said he could barely resist. Now he is called a loser and believes he was not invited to a friends birthday because the food issue would be too hard.  My heart aches for him.  

 

On the plus side we have a supportive family and we went to a big deal to have 100% gluten free three course meal, plus snacks for Mothers Day last night. Everyone brought food - and they all researched it and were proud to contribute.  From now on all family functions will be 100% gluten-free so no one misses out. I only wish I could say the same for other social occasions.  

[Midwitch]

Hanshotfirst have you considered cooking or preparing some gluten free alternatives each time, to take and share and show others how good it can be? I know its expensive to do so but it may be a way to show others that gluten free eating can be okay?

[GFinDC]

Hi Hanshotfirst,

You can eat pizza on the gluten-free diet.  There are pizza chains that serve gluten-free pizza.  Or you can make your own gluten-free pizza.  I agree it's not as easy being celiac as far as eating goes.  But you have to  live with the hand you are dealt.  Maybe in the future there will be treatments like you describe, but they aren't here now.

Why not spend some time researching gluten-free restaurants in your area?   You may find some places with good food that your friends will be happy to go to.  Bringing your own food is usually an option also.  If your friends care about you they will be willing to accommodate your diet restrictions a little.  It's not a lot to ask of them really.

 

[PTArt]

I completely understand.  I also avoid social situations, as I can only eat about 8 foods due to dysbiosis and leaky gut.  I too am tired of explaining it, even to the cashier at the grocery store (wow, you eat a lot of vegetables).  But you are young, and following the diet is not an option.  I found out at age 47, and the damage done to my body is irreversible.  I have multiple autoimmune conditions, and get so sick when I mistakenly eat something that doesn't agree with me I just don't bother to take the chance.  if you aren't strict with your diet you will pay for it later in life; it's cumulative.  Both my daughters have it too, we're hoping the grandbaby doesn't.  Just know there are others like you, if that is any comfort.

 

[DownWithGluten]

Hanshotfirst, unfortunately I have no solutions. I just want to offer another voice of support to show that I know what you feel like. In some twisted sense it might be "easier" for me in that the pain/sickness was so bad beforehand that I kinda wanted to just jump out a window, so being on the diet at least eliminates that and gives me a sense of control that I didn't have before. (Since before, I didn't know what was causing it). And I was a loner anyway, not the life of the party and spend a lot of time alone by choice.

But, good Lord, I know what you feel and how you mean. I've been gluten free for nine years now. It is hard being on the diet. People don't understand. You have to deal with a lot of attitudes from people, on top of all the difficulties of just being "paranoid" all the time about getting glutened, not knowing when you'll be able to eat next (if on a trip, etc.) It's like you're offending other people, or putting them out , or bothering them...nevermind how you feel, right? Haha.  I find that it's just way easier to travel and do things alone because food is inevitably such a big part of life and socializing. And it causes such problems there.  And so if I'm starving and thus feeling irritable, or am getting "paranoid" over a food or at a restaurant or whatever, better that I'm alone than with someone else rolling their eyes or feeling put out or judging me for overreacting. and of course those people want to eat, too, "real" food you know...and being around us might damper that some.

Sigh, I don't know. Sorry that you weren't as bad before (sickness wise) so that you don't even see the payoff so much now. The diet is hard, socially, for sure. I do feel kind of angry/defensive/bitter about it a lot.  But I agree with the others though, if diagnosed with celiac, you really need to stick to it, though, for your own well-being and health in the long run. :/

Hang in there and, just know ...even though it DEFINITELY FEELS LIKE IT DAY TO DAY...in this big wide world, you're not really alone in your struggles.