I Can't Stop Weeping...

[catsmeow]

I was laughing with tears rolling down my face when I read this line "sure, some things SUCK but some actually taste remarkably good" (I've been there)

Thank you for that! Thank you for the understanding and the welcome.

I feel like I've found my support group!!!

Yes, it sure is easier to stay home. I usually have a migraine well into Monday after being out in about on the weekend.

I'm going to ask my church if I can go first next communion before the wheat is dipped into the goblets. That's a very good idea!!

You have no Gluten free restaurants....(((hugs)))) I wish they were everywhere. We have one, and they also sell baked goods. It's delicious but high priced. However, can you put a price on not having to draw attention to yourself at a restaurant? It's nice to be invisible for a change.

I broke out in hives at Chili's because of the residual wheat on the table that wasn't cleaned well. Yep, they had to fuss and clean it good for me (I left that one out of the email to sister)

I went back and edited my post and changed all my asses to butts...LOL, because I realized I had "ass" in the same sentence as "church.....not cool....LOL....but you captured the original, which was raw emotion, so I'm OK with it....Ha Ha

It's funny, I was so happy to finally know what was wrong with me and to finally get well. i suffered for 10 years, with the last 3 being dibilitating. I love being well, and sometimes I forget that I use to be in bed sick all the time, and now I am a productive person again. I guess I could call this phase 2, the honeymoon of wellness is over, and the sad reality of this lifetime change has kicked in. I'm glad I found this forum. This is going to help so much....my peeps!

[Loey]

I know just how you feel. I've been at this for a year in April and I am still angry. My family is tired of me calling them "tribe Wheaterites" in an joking/antagonistic manner. I thought it was time for me to particicipate in the support forum because I need it really bad. Your post and the replies made me cry cry cry.....I feel like I found my tribe, "the Gluten-free-darites" I'm so tired of being high maintenance!!!

This is part of an email I wrote to my sister on Sunday. Sunday, I was at my lowest point so far in this journey. She has Reumatoid Arthritis, so she understands, and we vent to each other.

By the way, I have a wheat allergy. It's hard to find other wheat allergy peeps, am I welcome here?

To my sister on Sunday:

I am very depressed today about my wheat allergy. I got glutened all week by Splenda. It use to be a safe food, but I think they must have changed their maltodextrin supplier to one that is not in the U.S, because the bag I opened last week has been breaking me out in hives and migraines all week. I thought it was the coffee, but I eliminated splenda first, just this morning and did not break out. So, raw sugar it is for me. Maltodextrin made outside the U.S. is not safe.

Then I had to be a pain in the butt at church with communion. They have you dip the bread into a large goblet of grape juice. It did not occur to them that the rice cracker dipped in the grape juice full of wheat crumbs was a problem. But they were so nice and rinsed out the cup and put fresh juice in it for me......while 20 people waiting in line.....once again, I was a pain in the butt.

Then I went to my weight loss meeting, where they were all sampling this wheat bread. but, Jessica's fiance' made them take the bread into the kitchen to try. He's a chef and somehow knew that I would get sick from it in the air. I didn't have to say anything. That was nice...however, I was a pain in the butt.

Then we went to a neighbor's BBQ. I had to ask about every single ingredient in every dish before I found something to eat.....The host had to ask people things like "what brand of mayo did you use in the potato salad?" Did you make the Spanish rice from scratch or did you use a box mix?"

Again....I was a pain in the butt.

And I still got sick. It happened at the BBQ with all the cakes, wheat products, beer and wine in the room. I get sick from wheat in the air. I have a migraine.

I need a support group. My family is soooo sick of hearing about the wheat allergy, and I'm tired of being a pain in the butt.

I'm angry about this wheat allergy. I'm so sensitive now that I can't even be in a room with wheat without breaking out in hives.

I learned that the reason I cannot handle fragrances is because they have wheat in them. The manufacturers do not have to declare it. I saw that on "The doctors", believe it or not. They said if you have a wheat allergy and can handle certain scents (me) chances are that they are wheat free, but most have wheat ingredients and therefore make me sick!!!!

Sigh........

I hope I can be a part of your group as I am still working on coping...........

You already ARE a part f our group and we'll be here for you!!!!

Loey

[c12]

I know that some people are really gung-ho into the gluten-free lifestyle. They get really into it and inspire their whole families to join in...

Unfortunately, that's NOT me. I honestly find the diet to be the most restrictive and annoying thing ever. I hate not being able to go into a restaurant and order whatever I want. I hate having to pay twice as much for snacks and breads when grocery shopping. And I hate having to be the difficult one that people have to make special meals for.

Surprisingly, I don't even miss normal food. I just hate the inconvenient, expensive, pain in the ass lifestyle. I hate having to be "special."

I do it because I have to, but I don't think I'll ever like it. I hope and pray that my future children won't have the disease. Nothing about it is fun. At least not to me.

[love2travel]

I know that some people are really gung-ho into the gluten-free lifestyle. They get really into it and inspire their whole families to join in...

Unfortunately, that's NOT me. I honestly find the diet to be the most restrictive and annoying thing ever. I hate not being able to go into a restaurant and order whatever I want. I hate having to pay twice as much for snacks and breads when grocery shopping. And I hate having to be the difficult one that people have to make special meals for.

Surprisingly, I don't even miss normal food. I just hate the inconvenient, expensive, pain in the ass lifestyle. I hate having to be "special."

I do it because I have to, but I don't think I'll ever like it. I hope and pray that my future children won't have the disease. Nothing about it is fun. At least not to me.

I'm definitely not in the gung-ho category, either. Like you I miss the convenience. Food is my life in many ways as I teach cooking classes, test recipes for various magazines, and cater (or USED to cater). It SUCKS!!! I also hate being in the spotlight in a bad way. It is expensive and it seems unfair. If I had a choice I certainly would not be doing this, either, especially as I don't have the glutened symptoms. I do it because I have no choice. Stupid dumb positive biopsies!

Going to Paris this year will be interesting (my husband's AGM and spouses are invited). I want to go but this time will be so different as my first time there gluten-free. We'll be on a few bus tours (packed lunches) and going to the top restaurants in the city (will have to plan ahead for that, too). I was so looking forward to trying such and such but now never, ever can. We're also going to Italy and Croatia in 8 weeks which is tough. We used to travel for food but now that, too, is restricted. Going out and worrying about every morsel that goes into my mouth is my focus and I wish it weren't.

BUT I try not to allow myself think of anything beyond tomorrow as forever seems well, forever! Can't fathom living like this for the next 40 or 50 (whatever) years but am also hopeful things will improve drastically. And as I've mentioned elsewhere, I am making some really good gluten-free baking but it is not the same!

So, I honestly understand. It is a terrible, horrible, daunting, and frustrating stupid dumb disease.

[jo-marnes]

I'm so glad I've seen this thread - I too am just diagnosed... still eating gluten, endoscopy on 13th April. I think I spent 4 days depressed, tearful and down right bloody angry that this has happened to me. I've moved past that this week but only because I'm choosing not to deal with it and think about it too much - after all, I have a few more weeks of 'normal' eating before me... may as well make the most of it! I nearly burst in to tears when I took my kids to Subway the other day and realised I won't be able to eat it soon!

So far, it's not so much the diet that affects me, it's the thought of the social impact - not being able to eat out easily, having others struggle to cook for me etc.... I know I'll get used to it and one day everyone will understand. Just at the moment, I don't want to be different, I don't want to be a pain in the ass and I don't want to have people look at me like I'm a freak when I'm trying to explain. I don't want to have to take my own snacks to parties, take an 'emergency bag' to functions or struggle on my upcoming holiday. In fact, this whole celiac thing can just f*** right off to be honest!! ((Stamps foot like toddler having a tantrum))

Ok, back to my tub of ice cream that 'contains wheat' while I can.....

[ciavyn]

Y'all are breakin' my heart! I know how frustrating it is. I swear. I'm sensitive enough that I can't even have a crumb (though I don't believe I've had issues with airborne gluten...yet, anyway). But please remember something: folks everywhere have something. I feel like some days: do I need one more thing to complicate my life?! Really?! But then I see someone with severe arthritis or cancer or some other godawful disease, and I think, you know what? This is easier. Yes, it stinks. No doubt. But if you let it, it will force you to try other foods. You'll discover the joys of ethnic foods. You'll try vegetables and fruits you'd never consider, and you'll no longer zone out on eating too much bread before the appetizer even arrives (raise your hand if you done that a time or two...) You can grab a bag of chips at the convenience store, and no one can make you feel bad for not buying the bag of pretzels, instead... This is your frustration and annoyance...no doubt. But part of what helped me accept it was trying other foods that I wouldn't usually try, and discovered that I love Thai food and sushi, and as I find local places that know me, they'll cook things just for me. And I've talked my local health store into carrying other brands of gluten free items, as the call for them is even greater than before.

I'm not trying to sound all sunshine and roses -- you are right to be angry and frustrated. Feel it and get it out. You need to. But when you can, find the reasons to embrace this as part of your life. It will open doors you never considered, and it will make you so much more sensitive to people who struggle with other maladies and diseases. My compassion level, which I always thought was high, has gone through the roof since I've discovered I have celiac's.

Any way....(((((BIG HUG))))) to those of you who are really struggling through this. You are not alone, and you will get through it. You found a family here -- and more information and help than you can shake a stick at. Use it and be well.

[rdunbar]

I geuss I'm lucky that i was a chef in fine dining resturants, really since i was a teenager,

so i've been around so much fancy foods, that i'm kinda numb to it, and don't seem to care about what i'm missing out on as much as most ppl,

In any case, it does take getting used to, but i promise, if you stick to it, after a while,

you will start feeling spoiled, even, when you realize that you can have christmas dinner w/out the stuffing everyday;

while most Americans only bother to eat that well a few days out of the year.

oh, and crying spells,

not about food, but i would find something to cry about hours out of the day on a regular basis throughout most of my life,

and now it seems like it's getting under control, as are the other emotional/behavioral problems i've had that seem to be linked to gluten.

[love2travel]

I geuss I'm lucky that i was a chef in fine dining resturants, really since i was a teenager,

so i've been around so much fancy foods, that i'm kinda numb to it, and don't seem to care about what i'm missing out on as much as most ppl,

--------------------------------------------------

I've eaten at some of the best restaurants in the world, too, and eat extremely well at home so don't miss gluten-filled stuff at home. I am thankful that I cook so well because I don't scramble for awesome meals or panic about that. It's true that so many yummy things are naturally gluten-free including some of my favourites such as duck, lamb, squab, pheasant, foie gras, venison, etc. But traveling can be a different story. When it is such a huge part of your life it can be tricky to adjust.

Anyway, as I mentioned before, it is the social/inconvenience aspect that bothers me most. But today is a better day than yesterday and tomorrow will be even better and so it will go...

[Karla01]

I am the worst dieter in the world. I am absolutely crushed by having to admit that I have to change my life and my habits. I LOVE being low maintenance. I know that I will feel better by receiving this diagnosis (it started with Dermatitis Herpetiformis (horrible skin rash) and has led to me needing to lead a gluten-free life, so I know that I will get some relief... but I just can't imagine how this is going to work. You all seem so matter-of-fact, and I am just downright annoyed and sad. Did anyone else just feel mad and sad and exhausted by this whole thing?

I was diagnosed in August 2010. I cried in the middle of Whole Foods.It is a big lifestyle change, but you can do it. It will get easier each day. When you start to feel better it will be all worth it.

[love2travel]

Y'all are breakin' my heart! I know how frustrating it is. I swear. I'm sensitive enough that I can't even have a crumb (though I don't believe I've had issues with airborne gluten...yet, anyway). But please remember something: folks everywhere have something. I feel like some days: do I need one more thing to complicate my life?! Really?! But then I see someone with severe arthritis or cancer or some other godawful disease, and I think, you know what? This is easier. Yes, it stinks. No doubt. But if you let it, it will force you to try other foods. You'll discover the joys of ethnic foods. You'll try vegetables and fruits you'd never consider, and you'll no longer zone out on eating too much bread before the appetizer even arrives (raise your hand if you done that a time or two...) You can grab a bag of chips at the convenience store, and no one can make you feel bad for not buying the bag of pretzels, instead... This is your frustration and annoyance...no doubt. But part of what helped me accept it was trying other foods that I wouldn't usually try, and discovered that I love Thai food and sushi, and as I find local places that know me, they'll cook things just for me. And I've talked my local health store into carrying other brands of gluten free items, as the call for them is even greater than before.

I'm not trying to sound all sunshine and roses -- you are right to be angry and frustrated. Feel it and get it out. You need to. But when you can, find the reasons to embrace this as part of your life. It will open doors you never considered, and it will make you so much more sensitive to people who struggle with other maladies and diseases. My compassion level, which I always thought was high, has gone through the roof since I've discovered I have celiac's.

Any way....(((((BIG HUG))))) to those of you who are really struggling through this. You are not alone, and you will get through it. You found a family here -- and more information and help than you can shake a stick at. Use it and be well.

Thanks for putting things into perspective! I needed that. My rant (above) really shocks me - it's not like me and I am embarassed. Must have had an extra selfish day. In fact, yesterday I was thinking that I would far rather have celiac disease than my debilitating back injury pain and OA. But, alas, I have all. You are right - I do not have cancer, I am not a quadriplegic and I do not have ALS. And at least with celiac disease there IS something you can do about it so you can feel more in control of things rather than being helpless.

Although my life is all about food, it still can be - I do NOT need to give up that passion and for that I am grateful. I am still amazingly blessed.

[c12]

I think another problem for me is that I hate to cook. I'm not patient enough, unfortunately. So it drives me crazy that my options for convenience foods and take out are so limited.

[love2travel]

I think another problem for me is that I hate to cook. I'm not patient enough, unfortunately. So it drives me crazy that my options for convenience foods and take out are so limited.

Wow - I cannot imagine. That would be difficult. I teach cooking classes and am getting into the swing of some gluten-free classes. Aside from the occasional pizza I cannot even remember buying frozen convenience foods. I've loved cooking since I was 6 so it's engrained!

You have my sympathy as you are in a tough spot, that is for sure.

[Cinderella10]

I'm coming up on two years being gluten-free now, and I have found how much I love cooking, and Asian cuisine. It makes my life happy.

From the day after Thanksgiving until December...27th, though, I was *angry.* I just couldn't help it. I couldn't figure out what was wrong with me, and why I wasn't getting "In the Spirit." Then it occurred to me that that time frame centers almost entirely around food. All the neighbor 'gifts' were given to my husband (who, amusingly, doesn't tolerate sugar very well). So many expectations, so much food, so many food expectations! As soon as people started going back to normal after the holiday, though, I was fine! I'm not sure this will ever go away.

For most of the year, and most of the time, I'm okay, and wouldn't go back if I could. I still have my moments where I shake my fist into the air, but I'm okay. I find that I don't even really think about gluten anymore; it's all about gastroparesis and food allergies. The thing I miss most? CHEESE.

[Jenn624]

I completely understand. I was doing fine until my friends all ordered out from Mr. Hero. I ended up with a McDonald's Salad. I got so sick from that salad that I just started crying. I mean, if I was just going to get sick, I could have had the Mr. Hero. But I think I've gotten to the point now that I know how bad I feel when I get accidentally glutened, that I would never intentionally do that to myself. That doesn't mean that I don't still get weepy about it sometimes...

Jenn