Overwhelmed.

[MEH]

It's been two months since I stopped eating gluten. (I think I am either a celiac or gluten intolerant since birth for a thousand reasons).

It wasn't so hard to give up gluten at first, because I felt instantly better. No more migraines, bathroom issues, acid reflux, bladder problems--and I actually got a period again after two years! I could drink organge juice for the first time in my life, and I had energy for a full day! I stopped waking up as if I had the flu everyday. My asthma improved--and so did my seasonal allergies. It was a revelation. I think it was too late for some problems to improve--like neurological issues and memory difficulties, but I tried to see the cup as half full.

But after the intial glory I felt, my emotions started to level off. It's really hard to stay gluten free, no matter my research and devotion. I travel internationally for a living, which makes it almost impossible to stay 100 percent gluten free. Inevitably, I get glutened.

And then I started to resent having to be gluten free at all. I'd think of my upcoming trip to Italy---how excited I was to eat pasta and bread and all of the wonderful things that country has to offer. I go grocery shopping and feel absolutely overwhelmed by the constant reading of labels, the 90% of things I can no longer have, how ridiculous it seems to me that I will never ever eat a croissant warm from a baker's oven, or the beautiful Kava bread filled with feta cheese and carefully rolled up with sliced olives. Bread is fundamental to life. Amber waves of grain! and all of that. America's bread basket! This is just ridiculous, I thought! I will never ever have an ice cream cone again? For the rest of my life? Seriously? Or a fish fry?

I mean----to say never, ever, again is such a huge thing. It's like what an alcoholic must feel about giving up drinking, I suppose. You just can't picture NEVER ever again. And what a completely ridiculous thing to be allergic to! Wheat?! Really? Not bee stings, or the avoidable peanut---but wheat?

Then I started to doubt it. I wasn't tested after all. Yeah, I felt better, but maybe it was a fluke! Maybe I'm just gluten intolerant and can have wheat once in a while. Hmm...I'm just going to test this one time.

And so I did.

On the way home from a family trip yesterday---all starving, all tired, all ornery--we stopped somewhere and I bravely ordered a burger....with a bun. Within two hours, the migraine returned, I had brain fog, and my night sweats resurfaced---while I was watching TV on the couch! I didn't feel well at all.

I got the message. And it came as a huge shock. Because if you haven't been medically tested--and you test yourself in this way----you experience the reality of it all over again.... as in.... "Wow...this is really true. This is really happening. You are somehow allergic to wheat."

And I'm mad. I'm so mad I can't even describe it. I'm mad no one ever figured it out. I'm mad I suffered so much for so long when I didn't have to. I'm mad that my Dad died at 65--because he, too, had so many allergies and I'm wondering if gluten was behind so much of his misery and his early death. I loved that remarkable man.

And I'm mad at God for making me this way. I've had enough hurdles to jump over in this lifetime....and so...what? God thought he'd throw gluten into the mix for a laugh?

Why me? This just seems so ridiculous to me---because I have already suffered enough. For God sakes, we all have enough emotional turmoil in one lifetime, methinks, without having to be allergic to wheat as a comic afterthough while I was being born.

I am so mad right now that I can't even explain it in real words. It's sadness and anger and depression and purely unadulterated confusion mixed into one.

And I don't know where to go from here? Get tested and feel like crap for two months so my test results come out accurately? Honestly, I don't have time for that. I have four kids in college and I'm working and I just don't have time to feel like crap for two months.

Just not eat gluten because I was lucky enough to figure out why I was literally dying (or so it felt like) at the ripe old age of 48? Yes, that makes sense but it's hard and I'm so tired of everyone telling me "well, just don't eat gluten" like it's some easy thing. I'm so hungry...so afraid to eat anything...so confused about what I can eat and can't eat...and so mad about the whole thing in between being hungry...and I'm absolutely miserable.

All anyone ever talks about is the "food" in regards to gluten-istas...but what about the emotions?

I need help.

Dietician. Counselor. And a miracle or two.

Tell me how you figured this all out.

I'd really appreciate it.

[Lisa]

FOUR kids in College? Holy Moly. ...oh sorry I was distracted!

Go for the reality...Go totally gluten free. Give it a serious go for two months at the least.

It's really not all that difficult, although a few things might need to go. But quality alternatives are available. But let's not go here just yet.

Try a diet of meats, fish, fresh veggies, potatoes, rice and fresh fruits, this salt and pepper. Spring is coming and there will be many fresh options. Keep it simple.

If you see improvement in your symptoms, you may be on the right rack. And I expect that the emotions will ease once you stop putting poison in your body. My first response to gluten is agitation to any available person! I have learned to fore-warn, but not everyone takes me seriously.

I know that I have not answered all of your answers, but perhaps a start. Others will contribute.

[zimmer]

I try not to think about the "forever" of it. One meal at a time, one day at a time....

[Jestgar]

All anyone ever talks about is the "food" in regards to gluten-istas...but what about the emotions?

I need help.

Dietician. Counselor. And a miracle or two.

Tell me how you figured this all out.

I'd really appreciate it.

Find what you can eat:

chocolate

ice cream

chips

things that remind that that there other foods to enjoy besides bread. Keep these things near you for pouty eating.

Then look in the mirror and say "fine. I'm supposed to live. I'm supposed to eat healthy. fine. whatever. right after I finish this bag of M&Ms. Then, when you feel like you have a hold of yourself, stick with the focus on what you can eat. There is a lot, and most of it is better than what the food industry has been convincing us to eat.

It really does get better.

[etta694]

I am just commiserating with you.... I have just spent 3 days putting a letter together spewing my anger at the doctors here who have ignored me for years. (not that I will send it) But.. I know it is part of the grieving process, you know, denial , anger , let's make a deal please God , depression , and .. acceptance . It's hard.

(I think man has screwed with wheat hybrids so much that it has become difficult to digest..that's my theory anyway so I don't blame God.)

Anyway, I hear ya..

[MEH]

Thanks for your replies.

Because I am sitting here with tears streaming down my face. And it's not about the bread. It's about the confusion. How did I get this? When did I get this? Why did I get this?

Does anyone remember having these feelings at first? Just this pure confusion and anger and hunger?

Has anyone traveled after diagnosis? How hard was it to walk by a bakery in Paris? Or refuse a souvlaki in Greece? Or a fresh loaf of bread at the corner bakery anywhere? I never even ate that much bread or wheat, to be honest, but the truth is.....if I want a piece of bread one day, I can't have it.

Does that seem at all ridiculous to anyone but me?

[Jestgar]

I've traveled through Italy, Eastern Europe, and Spain. Bread is just a convenient holder for all the really tasty stuff, so just go for the tasty stuff. Cheese is fabulous anywhere, rice holds sauces as well as pasta, chocolate is better without distracting fillers. Italy, Prague, Slovenia, all have gluten-free food. Even in Hungary and Croatia I had plenty to eat. Spain has amazing hams and you can eat more without that silly bread filler. Morocco has piles of fresh fruit.

I've never felt deprived.

[Lisa]

Thanks for your replies.

Because I am sitting here with tears streaming down my face. And it's not about the bread. It's about the confusion. How did I get this? When did I get this? Why did I get this?

Does anyone remember having these feelings at first? Just this pure confusion and anger and hunger?

Has anyone traveled after diagnosis? How hard was it to walk by a bakery in Paris? Or refuse a souvlaki in Greece? Or a fresh loaf of bread at the corner bakery anywhere? I never even ate that much bread or wheat, to be honest, but the truth is.....if I want a piece of bread one day, I can't have it.

Does that seem at all ridiculous to anyone but me?

Honey, life is all about choices. In this case, you can opt for the diet or not. I don't think you have determined that gluten is your issue as of yet? Give it a go and see what happens and then take one step at a time. Please don't overwhelm yourself.

Most of us have been so miserably miserable, that an option of going gluten free was a relief. As well as quite the relief that it was a condition that a diet could control, without drugs or invasive testing.

It's not such a bad thing. And Europeans are far more advanced in gluten free dining than Americans. There is hope!

Grrrr ...sorry for the quote mess up.

[tictax707]

I totally remember - the why me? As if there was some cosmic "sentencing." I am starting to realize it's just life and it can take totally unexpected turns. It's ok to be overwhelmed because this really is a big deal. But time is on your side. As a friend of mine says "you can't eat the whole elephant all at once." You can get the hang of this. You can travel. Don't stop asking questions and checking up on what's newly available. It took me 8 years to realize that they had actually come up with good edible bread and I didn't have to make my own all the time anymore. And, there are gluten free ice cream cones - both kinds. (the airy sugary ones and the ones that are like waffle cones). Dietitians can help - you get started and counselors can help with the grief. And venting here is also a very good outlet because we truly understand and are constantly here reading and supporting. You can always always post and get responses. And they are always always supportive. Know that we are all here for you, and that you can get the hang of this. (hug)

[MEH]

Thanks everyone for your wonderful responses, becuase I'm really hurting today.

I ate bread yesterday (as I said in my post) to test the waters and what a mistake that was. But since I've never been tested medically, it was a good confirmation for me.

I can't eat bread.

It makes my head ache terribly. I get reflux again and I get depressed and moody. I get tired and brain fogged and sick.

I get it now.

I guess this "confirmation" was really more than I was prepared to handle today.

Thank you so MUCH for making it better....

thank you..thank you...thank you....

[Junot]

I put my life in perspective before going gluten-free I went vegan cause I thought maybe that was the answer, everytime I even think about complaining about my life I stop and put it in perspective.

Its either Eat Gluten and Dont have a Life OR Dont eat Gluten and live a happy life. eeeeeasy decision.

Oh, So you cant eat Gluten. Well atleast you`re Eating

Oh So you cant eat when you go on holidays. Well you`re on a holiday something 95% of the world will never be able to do, enjoy it.

Theirs also people out there with such worse problems than this, people who only have ``elemental drinks`` day in day out where they literally eat nothing or have to poop into a bag. Put it in perspective, people in wheel chairs and broken spines have the strength to live a happy life, why cant we?

[Debbie B in MD]

Dear MEH, I understand your frustraton and anger. I hope that as you remember what a difference gluten-free made in how you feel as opposed to how you feel with gluten, you will feel more encouraged that this is a condition that can be treated with out medicine. We do not need drugs to improve our issue. We can prevent and improve so many of the symptoms that we have been having. Yes, it forces us to go out of our comfort zones with respect to what we eat. It may open a whole new world of options in food we never would have considered. As a traveler you have had some amazing cuisine, I am sure. You may be inspired to bring some of that home.

Personally, I haven't been mad about my own diagnosis, becasue it has answered so many questions and I feel unbelievably better. The diagnosis of my 15 year old daughter is what gets me. She is lovely and sweet. She is a beautiful ballet dancer and works extremely hard in school. We now do have an insight into her Hashimotos thyroid and her junvenile rheumatoid arthritis in her knee (thankfully in remission). Now that we know we can protect her from future autoimmune issues hopefully.

It is a lot to take in. There are countless wonderful blogs for gluten-free eating. They range form gourmet to simple.

We are not alone in this. God is big enough to hear your anger and embrace you. Let Him. Yes, bad things happen to good people. Allow us here and your in-person friends minister to you. In the short time I have been here, I am amazed at the suuport that people give. Before you know it, you will be encouraging others as they learn about their own celiac disease. Hugs to you.

[ciavyn]

I do know the feeling. My dream is travelling more, and when I first realized I couldn't have gluten, I thought I would never travel again. But...

Perhaps we spend too much time focused on the foods we eat. Surely the countries you travel to offer other pleasures. And I'm told Italy is amazing for the gluten free among us because of their awareness. Because I've eliminated even gluten free grains and breads from my diet, my appreciation for meats and vegetables has increased ten-fold.

Because when I get gluten I get so sick, it doesn't even appeal to me any more. Every now and again I get a whiff of something really lovely...but I enjoy the smell, without the conclusion of illness. I got royally sick in NYC this past Christmas, which ended up with me vomiting in the middle of 5th Avenue's shopping district. Can we say humiliation? I've never cheated, but up until that point, I had a lot of temptation issues. Being that sick for two days, which resulted in public humiliation in my favorite city (for the second time, as I'd gotten sick years ago in the Port Authority, but I didn't know what caused it back then -- I do now!)...I have NO desire to cheat. I enjoy the scents and images of good foods. I appreciate their enjoyment for others. But read some books about when wheat was added to the human diet, and the end result of our health. It gives you a new perspective.

And so much can be made with alternative flours, if you so desire.

There's no denying that travel is challenging. But it will force you to try new things and find enjoyment in things that you might miss otherwise because you are so focused on the next good meal.

Hang in there. And allow yourself time to grieve. You are allowed to be angry, resentful, bitter and confused. We all were. But as you move out of that period, you will be able to embrace the new alternatives you would never discover otherwise.

[Glamma]

After reading your original post I could so relate. I'm just coming out of the angry stage and trying to re-establish my long standing relationship with God. I spent four hours yesterday afternoon making my first nutty crunchy high fiber multi-grain bread. The sense of satisfaction has been worth all the expense and time. Breakfast every morning this week will be a slice of that bread toasted in my gluten-free toaster and spread with Brummel and Brown Butter. I may sprinkle cinnamon sugar on top for an added bonus. It does get better, but it can take so much time. As for me, I had to know for sure I had Celiac (even though my birth daughter has it). There was no way I was giving up gluten unless I had to. Blood work and biopsies both positive and so I move on. Find a local support group. My group has been so supportive. When I go to meetings it great to eat and visit with people who understand. Good luck in your journey my friend and let's both try to draw closer to God.

[zus888]

Hi. Please know that I'm not saying this to minimize your feelings or disregard them in any way. I am just saying that there might be a light at the end of the tunnel you are in right now. I *just* went through all of what you are going through mentally right now. And you know what did it? GETTING GLUTENED! I was effing miserable and angry and depressed and bitter. It lasted about 4 days and I'm finally back to my normal self with a better perspective. That's not to say that I don't miss bread or won't have my days where I'm just bitter about it all, but I have to say that after getting glutened, my emotions were out of control. I'm hoping that is part of what you are dealing with right now, and that in just a few days, you won't be feeling so raw and bitter.

I think we all are on our own journey through this in how we view it and deal with it, but I think getting glutened can make things very skewed, if you are apt to be mentally affected by it.

All I'm saying is to hang in there and see if there has been a little change in a few days. Maybe things won't seem so dark. And, if they still do, we are all here to help you through it.

[love2travel]

Don't worry - we understand better than most. When I was diagnosed I was shocked as I am a silent celiac which means I don't have any symptoms that I know of. I did have several miscarriages which I attribute to Celiac but it does not make me feel ill, lacking energy, no neurological problems and so on. So, I found it REALLY tough to go off gluten. Plus I teach cooking classes (sorry for all those who've heard this 1,983,092 times already) and food is my LIFE. I have severe back pain from an injury so can empathize with those who hurt.

Fast forward two months exactly. Now it's just an ordinary part of my life. EXCEPT for travel and eating out. My husband and I are also going to Italy and on to Croatia to our house for the month of May. I am thrilled and giddy with excitement except for my back pain (how the heck will I do this?) and am dreading strolling down the streets in Venice ogling all the breads, pastas, pizzas, gelatos and all. Sure, I'll probably even cry. But the good news is Italy is amongst the top countries on the planet as far as knowledge about Celiac goes. Everyone in the country is tested for it by the age of 5! Anyway, gluten-free food is in high demand there. There is even gluten-free pizza. Croatia is not nearly as knowledgeable whatsoever so we'll pick up our groceries in Italy on the way. Where are you going in Italy? One of my fears is getting glutened and not knowing it.

This disease doesn't seem fair. When people first told me "It will get better" I secretly thought, "Yeah, right. You don't know how much I love food and cooking! Especially when I eat gluten I feel nothing." As folks have said, it does indeed get better. Don't dwell on FOREVER and what you CANNOT have but what you CAN have. You found out! You get another chance! I have learned so much on this journey of mine and could not cope very well without my faith in God ushering me through. You can choose to be miserable (I was!) or you can choose to move on and live like you are meant to. I have learned SO much about myself recently and feel a bit wiser.

So, it really and truly is NOT the end of the world. Honest. There are some delightfully yummy naturally gluten-free food out there (check out the Baking/Cooking threads).

Be sure to book gluten-free meals on flights. I'm taking along some snacks, too, as I cannot rely on Air Canada providing anything decent...

[Marilyn R]

I still feel lucky! We're lucky we can deal with a disease merely with a diet. It's inconvenient and frustrating, but it's so much better than enduring other diseases associated with celiac disease! We are so fortunate for having been diagnosed or figuring it out on our own.

I was a bridesmaid for my first cousin who died of MS in a nursing home in her late 30's with two teenaged daughters after her husband divorced her because of her disease. Connie would be jumping over the moon if she had a chance to travel internationally, but she'd have to jump it in a wheelchair or hospital bed, and wouldn't be able to verbally express her happiness.

You will find good food and have a great time. You were dealt a difficult hand, but you have what it takes to play it out. At least you aren't poor and starving in Indonisia with a rice allergy!

Good luck, hope you enjoy your travels, I don't mean to be harsh when telling you about my cousin, but at times other perspectives can be enlightening.

Giving up a croissant? Easy. Find a good artichoke or awesome olives, or fish, or the hundreds of foods you can enjoy without repercussion.