Sitting Here About To Lose It

[MartialArtist]

I'm about to lose it and I need to vent to a virtual room full of total strangers who have a better chance of getting it than anyone else.

I'm 5 weeks into this uber-fun ordeal of re-learning how to eat and cook without wheat (and I was a total carb junkie, so that's really freakin' hard). Understandably, the rest of the world is going on with their lives and expects me to as well, so I oblige. But behind the scenes, every meal requires thought. Every time I open or close a bag of wheat-based crackers or cereal my kids leave on the table after a snack or meal, I have to remember to wash my hands. Every time my husband loads the dishwasher without pre-rinsing the bread crumbs off the cutting board into the sink, I wonder if the dishwasher cycle will have kicked all that gluten around and left tiny traces on other dishes (not to mention the crumbs that fell off onto the counter that I am the one to clean up to protect myself.

So I don't bother the rest of the world about it b/c they don't want to hear about my stuff. But then my boss brings in donuts this morning and offers me one. I could say "no thank you" but I'm 5 weeks into this so I say "I can't have one" and she says "Oh yeah. Sorry about that." What's worse, my husband thinks about the fact that I might not be able to eat our old BBQ sauce (which was nice of him) so he sends me a recipe he found online -- for one made from Guinness beer (which is wheat free but has barley malt so not gluten free). If the roles were reversed and he were the one diagnosed, I'd have probably bent over backward to seek any gluten-free option for any "normal" foods we eat and try them as a family, but as it is, I'm going out of my way to ensure that I'm the only one who has to endure any changes unless I can make the changes invisible to them (like using gluten-free flour to thicken a sauce), and no one seems to notice or appreciate that effort.

Upshot -- it's on my mind a gazillion times a day, I can't burden everyone about it, and I'm not getting the response and support I need from home.

But in all honesty, when stuff works well and does turn out like I hoped (i.e. indistinguishable from gluten-containing or at least equally yummy), I'm elated and don't need anyone's atta-girl (at least not immediately). Can someone please stop this emotional rollercoaster and let me off?

Thanks for "listening".

[mushroom]

I would say, let 'em eat cake, as in gluten free cake. Don't tell them you're cooking gluten free, just do it. They can eat all the gluten they want outside the house. You are going to have to set more boundaries and rules to keep yourself safe. This disrespect of your needs will not do. I don't know what discussions you have had or what rules have been set, but the current situation is obviously much too stressful for you and has to change. Call a family meeting and tell them that they have to cooperate if they want to keep having a mother Because they are digging an early grave for you.

Nobody should be leaving open bags of gluten lying around, I don't care how old your kids are. Kids are trainable, and you will have to enlist your husband's help in training them, and you will have to train him. It may take him a while to fully "get" it, but at least he is thinking about it, which is a start. But you are the one who has to set the rules for the kitchen, rules that you can live with, and that means that they can only have gluten in one place in the kitchen, and they have to clean up after themselves. You are not going to be touching their nasty gluten. And you will be cooking them delicious, healthy, gluten-free food while they are in the house eating your meals. You can choose to let them have other gluten things in the house, or not, but if so they must be contained in a special gluten cupboard, and they must take them out and put them back in, and clean the part of the kitchen counter and the cutting board they are allowed to use. Sound a bit harsh to you? Well, the way I see it, it's the only way to preserve your sanity:)

[Northern Celiac]

Don't sweat it, you'll get things worked out.It does take more work and you can't cheat, but ask yourself"do I want to cheat and be sick, or stay on the diet and stay healthy

[gabby]

Celiac disease requires lots and lots of adjustments to your lifestyle. These adjustments can't be learned completely from a book or from a class. They are learned by going through the motions, everyday, every meal, etc. It takes lots of time to learn and adjust, and 5 weeks is just a teeny tiny beginning.

Think of it more like having a baby. Did you become an instant knowledgeable parent the minute your baby was born? Were you completely up to speed on parenting 5 weeks after having your first child? No. Nobody is. It takes lots of time. Also, were you the only one who adjusted to having a baby in the house just because you were the one who physically had the baby? Nope. Everybody in the house had to adjust and learn and accomodate the new baby who arrived and who was going to be a permanent fixture in the family.

If you've been going strong for 5 weeks...then congratulations for making it thus far. Just like parenting....it is a good idea to get as much support as possible. Read books, join support groups online and in person. Troll the internet for celiac information, find a local celiac chapter and get some cooking advice from old pros, and make some celiac friends. Put it all together, and help yourself to make and maintain the transition to the gluten-free lifestyle.

Your first year will be a year of learning and growing. But after the first year, so much of this will be second nature to you.

Hope this help!

[ciavyn]

You are not alone or isolated, promise. ((hug))

I actually just had a discussion with my husband. I asked him if he wanted to go on a mini-date with me to McDonalds. We were both tired, hadn't had dinner, and I got glutened AGAIN over the weekend. I do best on carbs when I'm glutened, so bring on the french fries (it's good that I run, otherwise I'd be piling on weight!). But he acts weird on the phone. I asked, "Where else would you like to go?"

"The Chinese restaurant."

Now in any other house, this would be an ok statement. In fact 7 months ago, I would have said, "Sure. We can do that." But now it's like the worst evil imaginable because it is my FAVORITE food and I can't have it any more (though my own fried rice is much yummier!). And I had to explain to him that while he is unhappy with the way I have to eat, it's life. That means, go and get your Chinese when you have to have it, but don't do it around me and torture me, and don't shove it in my face. Which is not what he means to do -- he's just frustrated too.

Your family is going to be just as frustrated...it is an adjustment for everyone. So let it be. You shouldn't be shouldering all the burden. If one of the kids had an injury, the entire house would have to adjust to accommodate them. YOU are no different, and you deserve it. You are part of this family. Stop taking it all on yourself and let them be a part of it. Try new foods with them, remind them to be careful and clean up after themselves. Find them gluten free alternatives to their favorite foods. Make sure their gluten foods stay far, far away from your areas (we use the cube cubbies at Target to separate) and make sure they understand that this food cannot come into your area. Treat it like raw chicken. They will begin to get the idea if you help them understand. And then they'll be more careful.

You aren't alone. We're all in this too. And vent any time you need to. It gives us opinionated types an opportunity to do what we do best!

[rnbwdiva]

I'm about to lose it and I need to vent to a virtual room full of total strangers who have a better chance of getting it than anyone else.

I'm 5 weeks into this uber-fun ordeal of re-learning how to eat and cook without wheat (and I was a total carb junkie, so that's really freakin' hard). Understandably, the rest of the world is going on with their lives and expects me to as well, so I oblige. But behind the scenes, every meal requires thought. Every time I open or close a bag of wheat-based crackers or cereal my kids leave on the table after a snack or meal, I have to remember to wash my hands. Every time my husband loads the dishwasher without pre-rinsing the bread crumbs off the cutting board into the sink, I wonder if the dishwasher cycle will have kicked all that gluten around and left tiny traces on other dishes (not to mention the crumbs that fell off onto the counter that I am the one to clean up to protect myself.

You are not alone in any of these frustrations. I have not figured out how to handle the family angle... I finally sectioned off a gluten free part of the kitchen, and, the same day I had spent oodles of time cleaning and prepping and announcing, I came into the room and found a bag of rolls open on that section. I reminded my husband that it was totally gluten free, and he did not even respond. (This was better than the time, early on, when I asked him to cook a leek soup and gave him a recipe and all the ingredients. When we were eating it and I was many spoonfulls into it, he proudly talked about improving the recipe, and adding flour to thicken the soup. When I put the spoon down and asked which flour, he cursed, realizing his mistake. He did much damage to me, not on purpose, but because, like your family, he was just not being thoughtful and careful enough. Now I only ask him to occasionally grill veggies for me, and I do all of the prepping.)

But I can tell you that cooking gets much, much easier. I found an amazing cookbook that is not gluten free but has many recipes that are, and the recipes in this book are heavenly. A lot of work, but heaven. So I have some favorite staples for dinners, and I still need to invest a lot of energy and thought into investigating new meals, but I now have a bunch of wonderful meals that I now crave that satisfy the current diet requirements (for me, vegan and gluten free). Go treat yourself to an hour in the cookbook section of a bookstore and try some new things. One of the best pieces of advice I got was to experiment with the tastes of the foods I can eat, rather than trying to recreate the tastes of the foods I can no longer eat. That has completely changed my approach and now, instead of things being tolerable or close, I find delicious amazing food.

Good luck to us all!

[mommida]

They just don't warn you that this diagnoses turns your life up-side down. You find out who you friends are, because this much change brings out the best or the worst in those around you.

You have to change yourself too. You will have to stand up for yourself. You will have to take more time with waiters ordering a safe meal. You will have to put more planning into your meals. You will learn how to take of yourself. As a wife and mother you have been taking care of your family, now you have to focus on your health. You will get this under control and you will be stronger and healthier than before.

This may be your best support system you are ever going to find! You can ask any question here. Sometimes that can lead to much of an adult conversation, but the moderators snap everyone back into good behaviour.

We also rip on stupid things gluten eaters say. No one else really gets how ignorant some of the things obnoxious people say or act like.

Hang in there! ((HUGS))

[tarnalberry]

I seem to often be the "tough love" responder on the board, but it's a role I'm good at, so here it goes - meant in the most supportive way possible:

Stop being a martyr and making this so hard on yourself. Your husband and kids don't need to know each and every little detail that passes through your head, but they should NOT be "protected" from the changes that you - meaning you AND your family have to make. Not only are you doing a disservice to yourself, but you're also not respecting the fact that they have a part in this.

Don't stay shut up about it, do speak up when something needs to change, and don't isolate yourself by trying to prevent this from affecting anyone else.

[eva-girl]

martial artist -

you need to sit down with your family and have a serious talk - if you've already done it, do it again. your kids should be picking up after themselves, period. if they are old enough to open a box of cereal they are old enough to put it away. if you don't already have a designated shelf of your own in the kitchen you need to do it right away, and be sure everyone knows NOT to put gluteny items there. designate utensils and plates, too.

my hubby is not gluten-free and his plates are white, mine are red. all my cooking utensils have red tape on the handles. all our pots, pans and bakeware are nonstick. we have no wooden anything in the kitchen - too hard to keep gluten-free. he has the top two shelves in the fridge and i have the bottom two. we keep our kitchen spotlessly clean - seriously, you could eat off the floor in there! every sunday we scrub the whole kitchen down with water and bleach, like a restaurant. we put on 80s music and refer to to it as our sunday morning workout... gotta keep it lighthearted, right? we've been doing this for 2 years and it works. i rarely get glutened - it's been about 5-6 months or so since the last time.

in any case, you have to take the initiative to stay healthy. you need to remind hubby that he HAS to scrub the hell out of cutting boards, etc, before putting them in the dishwasher or you might get sick. the kids need to pitch in and help scrub stuff, too. as for work, your boss can't be expected to remember every diet issue you (or any other employee) have. it's easy to get frustrated, i know, but it helps to remember that your kids love you, your boss likes you, and your hubby is only trying to help by finding recipes for you.

it hasn't even been 2 months yet - if you let everyone stress you out you will be a basket case. i found that after telling coworkers, family & friends about my celiac and what i could not eat, they still forgot and i used to get really upset. but all that did was make me feel worse. now if they forget and offer me something gluteny i just say "no, thanks" and keep going. i don't make a big deal, i don't get huffy, and eventually they get it. everyone will slip up now & again -you will too, believe me- but don't take it personally.

[Nor-TX]

I also love Chinese food and so does my husband. We have a buffet near where we live that I have been able to eat at without difficulty. They have sashimi (raw fish with sticky rice), steamed shrimp, mussels, baked salmon (no flour coating), Hibachi grill where you pick what you want and it is stir fried (he cleans it before cooking my food), steamed shrimp in rice wrappers, oysters, steamed clams, once in a while crab legs, and a few other delights. My husband eats all the regular stuff - SS chicken, teriyaki chicken, sesame chicken, those little sugar buns and he other faves. We are both happy, I get to eat out and I am safe. I bring my own gluten-free soy sauce for the sashimi.

That is where we go when we want to eat out. We are both satisfied and I only feel stuffed but not sick.

[ciavyn]

I also love Chinese food and so does my husband. We have a buffet near where we live that I have been able to eat at without difficulty. They have sashimi (raw fish with sticky rice), steamed shrimp, mussels, baked salmon (no flour coating), Hibachi grill where you pick what you want and it is stir fried (he cleans it before cooking my food), steamed shrimp in rice wrappers, oysters, steamed clams, once in a while crab legs, and a few other delights. My husband eats all the regular stuff - SS chicken, teriyaki chicken, sesame chicken, those little sugar buns and he other faves. We are both happy, I get to eat out and I am safe. I bring my own gluten-free soy sauce for the sashimi.

That is where we go when we want to eat out. We are both satisfied and I only feel stuffed but not sick.

I wish they had a buffet at our favorite place! But that's not a bad idea to keep in mind for the future. I LOVE sushi, but I got glutened the last time I had it...but I'm willing to try it again. I just can't get enough of it!

[Skylark]

I don't guess you're lucky enough to have a PF Chang's nearby?

Maybe I'm lucky but I haven't gotten glutened with sushi. I order simple things like sashimi and rice, edamame, tuna roll, or nigiri. I make sure they don't "decorate" my rolls or plate with shreds of fake crab meat.

Martialartist - the celiac diet is a pain in the butt, no question about it. I cope by "counting my blessings" so to speak. I feel lucky to have a condition that is 100% treatable by diet alone.

[sandsurfgirl]

Are you sure people don't want to hear about your stuff or are you assuming that? Now of course not every Joe on the street wants to hear it, but your husband, your friends, they are your support. When I first went gluten free I turned to them and gave them the whole sad complicated story. Only one friend was an ass about it and I dumped her for that and other reasons. You need to open up to your husband about your struggles. He is the one who should hold you when you cry about not being able to eat your favorite pizza.

I sobbed over Guinness actually.

I had a hysterical panic attack the first time I went grocery shopping after I was diagnosed. My husband happened to be home from work and kept the kids thank God. I left my entire cart and ran to my car hyperventilating. I was so dizzy I barely made it home and I fell onto the floor when I got in the house crying like a 2 year old for like an hour. I'm not kidding it was that bad.

But now... 4 months later it's like second nature. It's just my life. I eat out quite frequently. I have my favorite breads, cereals and cookie mixes. My whole family is gluten free in the house. I kept getting glutened by my kids and my husband realized a healthy wife is far more important (and happier) than any bread or pasta.

Here are some brands that have made it easier for me with my kids.

Gluten Free Pantry White bread mix and their French bread mix (can be ordered online from Am a zon.) are GREAT! and so normal. They actually make a regular loaf of white bread that you can have a sandwich with.

Tinkyada rice pasta is acceptable, even for this hard core Italian girl and that's saying a lot.

Betty Crocker gluten free cakes, brownies and cookies are available at lots of grocery stores and they taste great!

Glutino has pretzels and crackers that are ludicrously overpriced but yummy yummy and "normal" tasting.

Hope this helps!

[sandsurfgirl]

Oh and... look at the forums on here for restaurants. Find out which ones near you have gluten free options and memorize them or keep a list in your car. That way when you're hungry you can have a place to eat.

Also, go to local restaurants you like when they're not busy and ask the manager to help you figure out what you can eat there. This research is very valuable later. The mexican place near my church was wonderful and now they have a lifelong customer. We go there almost every Sunday after church because I love their food and I know it's safe for me.

[MartialArtist]

Thanks everyone. The support (and even the "tough love") is much appreciated. I learned to do Martyr Mom from my own mom (neither of us is particularly dramatic about it -- we just sacrifice what needs to be done to make things work for the family, even if that's our last bit of energy or whatever). I broke my foot a couple of years ago and had to stay off it for a few weeks, and I nearly went insane trying to still be the one who did the grocery runs, all the cooking, etc. So this is approach not new for Celiac. And I've been at this habit for so long, I'm totally out of practice at asserting my needs (largely because I'm usually totally capable of handling all my own needs and everyone else's without much assistance!). You're right that I've got to stop shielding them from this entirely and involve them in making it work.

I started by reorganizing the pantry today. I had initially given myself a 2' section of one high shelf to put my gluten-free stuff on, but I've determined that it's entirely impractical to do it that way. I'm the cook, so a LARGE number of things are going to be gluten-free -- like at least half the pantry! -- so I have divide it more reasonably now.

Baby steps. I just hate feeling like I have to start over learning so much of this stuff. I get that 5 weeks is just a beginning, but I'm ready to be an expert in this now! LOL! Impressive patience, eh?!

Anyway, thanks again for listening and responding.

[mushroom]

You have made a great beginning, MartialArtist. Even SuperMoms need help and support or they run out of gas, which is what happened to you yesterday. And you are not doing your kids a favor by waiting on them hand and foot - it is good for them to learn how to take care of themselves. Moms should not be slaves, just organizers and teachers. A family is a unit to which everyone should contribute that which he can to help. Enlist the help of your family (in your own way - whatever is your style - but you must be assertive about your needs and what is necessary to keep you safe and sane ) The more respect you have for yourself the more respect they will have for you. It will be a tough adjustment for them at first, to find out that even moms are people with needs, but you can make it happen.

[proud-armywife]

Hi,

I equate having this disease like being pregnant-if you are a girl which I think you are, it is all you can think about all day and because we are hungry we of course think about it all the time. I don't know how sensetive I am to Gluten or wheat or barley or oats- I do know when it is really bad my eyes get severely bloodshot and I feel like I was hit by a mac truck- but I am moving slowly. It's ok. It will be ok. We all have to find our own pattern in life to deal with this disease. I have not found mine- But I have to allow myself time to find a way. There is not an easy answer- and in fact I wish I could take a pill and have this go away, I feel personally like that would be so much better. I'm probably not the best person to talk to because I am not gluten free- I have only been keeping food journals of things that make me tired so I don't eat them. But I feel overwhelmed when I think about taking it all away for good- so I am going slow. I need to for my sanity and kids. All of us is different, and your husband cannot even begin to understand, I brought my hubby into the grocery store and asked him to get my some snacks that not only are gluten wheat oat and barley free but also not manufactured in a plant that does. He looked at me and said- I'm sorry. I am completely overwhelmed. Me too I said and we left. I know that you will find a way through this sensetive time and I pray for us all that more awareness and products are made available. Good luck and I'm saying a little prayer for you!!!

[MartialArtist]

Hi,

I equate having this disease like being pregnant-if you are a girl which I think you are, it is all you can think about all day and because we are hungry we of course think about it all the time. I don't know how sensetive I am to Gluten or wheat or barley or oats- I do know when it is really bad my eyes get severely bloodshot and I feel like I was hit by a mac truck- but I am moving slowly. It's ok. It will be ok. We all have to find our own pattern in life to deal with this disease. I have not found mine- But I have to allow myself time to find a way. There is not an easy answer- and in fact I wish I could take a pill and have this go away, I feel personally like that would be so much better. I'm probably not the best person to talk to because I am not gluten free- I have only been keeping food journals of things that make me tired so I don't eat them. But I feel overwhelmed when I think about taking it all away for good- so I am going slow. I need to for my sanity and kids. All of us is different, and your husband cannot even begin to understand, I brought my hubby into the grocery store and asked him to get my some snacks that not only are gluten wheat oat and barley free but also not manufactured in a plant that does. He looked at me and said- I'm sorry. I am completely overwhelmed. Me too I said and we left. I know that you will find a way through this sensetive time and I pray for us all that more awareness and products are made available. Good luck and I'm saying a little prayer for you!!!

Proud ArmyWife -- that's actually a good analogy b/c you think about it all the time and the rest of your world (of people) cares and is interested but not involved and therefore not able to understand your near-obsession with it. Hopefully, though, that subsides eventually (you and I are both new to this) and it becomes part of you (like motherhood!) but not a constant thought (though like motherhood, I'd think it would continue to be a part of every day -- just more natural!).

As for your grocery shopping issues and your sense of being overwhelmed, I can see that. My first trip to Whole Foods (stupidly on a Saturday afternoon) ended with me driving out of the parking lot (albeit after buying stuff) and sobbing to my husband on the phone that even though I had bought things, I still didn't have stuff to make an actual meal and he needed to feed the kids and let me just manage myself for that day. Then I spent almost 2 hours in my local grocery store reading labels and using my phone to google "ProductName gluten free" to find out what I could find! Now, though, I've found something of a rhythm and am much more comfortable with the shopping part. If you'd like some help, you might consider starting with the info below. I understand your thoughts of easing into it. I didn't do that, but I could see it'd be much easier if you did.

Breakfast suggestions:

• Cereals: Cinnamon Chex are FABULOUS; Rice and Corn Chex are also "normal" foods that are gluten-free. Then there's the EnviroKids line (even my regular grocery store has them) that are actually kinda good -- I got the peanut butter puffs. I've only eaten them as a snack in a baggie, but I bet they'd be good with milk.
  
• Other options: Eggs work and I haven't run across any bacon that appears to have gluten in it (though there may be some -- just look for ingredient lists with the least items and check those! That's probably better for you anyway!) If you like yogurt, I think many lines are gluten-free but I know Yoplait is (just not with the granola add-in). That's my favorite brand anyway, so I'm happy!
  
• Coffee: regular drip coffee is gluten-free and (yea for me) both Coffeemate and International Delight creamers are gluten-free!!!
  

Lunch ideas

• Bread: Go to a Whole Foods or Sprouts store if you have one near you and get the Udi's bread (white or whole grain). Price varies by store, but it's worth it to be able to have easy toast or sandwiches. I got the whole grain. It makes a FANTASTIC grilled cheese sandwich (and plain ol' Kraft Singles are gluten-free). If you're not used to a whole-wheat-type flavor, the whole grain takes a couple of eatings to get used to, but I liked it the first time and loved it the second time I ate, it, so it's not that different. Haven't tried the white yet, but I have some and plan to soon.
  
• Deli meat: In your deli section, all Boar's Head is gluten-free. In the pre-packaged stuff, Carl Buddig thin-sliced meats are gluten-free (as are my local store's store brand equivalent -- labeled on package!)
  
• Chips: If you like Pringles, try Lay's Stax -- they're gluten-free and taste the same, though they're a bit thicker (my kids balked at them b/c of that but I like them fine). And Lay's potato chips are fine, as are many varieties of Tortilla chips -- most are just corn chip, oil, salt, which is gluten-free! Also, my local grocery store and (Walmarts) carry Rice Works crisps that are really tasty (I like the Sea Salt and Baked Cinnamon ones).
  

Other

And don't forget that all fresh fruits and veggies, all plain frozen fruits and veggies, and all unseasoned meats in your grocer's meat market are fine. And popcorn is fine -- if you like microwave popcorn, just find the ones with popcorn, oil, and salt and don't worry about wading through long lists of iffy ingredients! Orville Reddenbacher (sp?) Naturals are really good (though slightly oilier than I originally expected).

We've starting making smoothies in our house with 1-2 containers of Yoplait vanilla yogurt, a whole banana, 5-7 strawberries, 2 ice cubes, and enough milk to make it flow (just start with 1/2 cup or so and add a little at a time into the blender as it mixes). Very yummy, pretty good for you, and totally gluten-free. What a great snack!

(Thanks again everyone -- I'm doing much better since the original post here...)