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MEH added a topic in Celiac Disease - Coping WithObservations We Can All Relate To...It does get better.
The first day I realized that what was actually making me sick for 48 years was "wheat" I had several leading emotions: Mad that I was diagnosed with MS rather than celiac. Sad that I had been sick my whole life and thus probably lived a less exceptional life than I could have. And then a wave of relief. I couldn't believe all I had to do was to cut something out of my diet and I would be free! It isn't quite that easy, unfortunately. Giving up wheat for good is a hard thing to do...but it does get better.
Thank god for gluten free pancake mix! If I had to eat one more bowl of Corn Chex for breakfast, I think I would have stopped getting out of bed.
Grocery stores are getting better. My grocer has agreed to stock a few more things for me. Gluten awareness is really growing, but we have a long way to go.
I usually get glutened when I'm not thinking. This new awareness takes time to develop. I was making a regular cake the other day, and without thinking, took a lick of the batter as I'd been doing for 48 years. Or, I popped a wheat cracker in my mouth as I was making a cheese tray. Those things we used to do "automatically" are the often the last things to go on a gluten free diet. I have to remember to stop and think before I eat---
Food is harder to find. I'm an international tour director who often eats out three meals a day....I have to search hard for food I can eat which takes up time and energy---that I often don't have.
I realize now that my body often gave up wheat voluntarily---as if it had a secret wisdom. I seemed to avoid wheat on some level before I even knew I was a celiac. So, giving up wheat wasn't that hard for me. What do I miss the most? Hotdog buns. (Real ones). And I miss eating without having to read a label first.
I laugh now when I think of how many waitresses I've made go into the back to bring out a big tub of salad dressing or some other food type so I could read the label. The new normal is sometimes ridiculous--but humurous.
It's been absolutely amazing to me that for the first time in my life, I no longer have acid reflux. It's wonderful to drink orange juice and lemonade again! I've been able to add a few things to my diet rather than avoid them. There are some blessings!
I run into all kinds of people who are celiacs now. It's fun to compare notes.
Gluten free beer is really good. I think it tastes better than regular beer. It's widely available too, which shows you how much better the marketplace is getting.
I'm sorry..but I've yet to find a piece of bread that comes close to regular bread. I've given up sandwiches.
I'm not eating as much..which really isn't good for me. You go through this confusing time in which you're not sure what to eat, and you haven't established a regular routine. This is that "in between" time and it isn't easy. You just have to keep working your way through it.
My kids like some of my gluten free food, which I have to shoo them away from. Too expensive to share! But they're cute. They often bring home products they find for me to try.
I live in a coastal town and I miss fried clams. And clam chowder. I'm trying to make some of our local restaurants aware that it's just as easy to use corn starch as a thickener as it is flour.
I have days now where I feel like a "regluar" person...plenty of energy and I can go all day for the first time in my life.
I was mad at my Mom for a few weeks for not acting on some of my symptoms when I was young. (Delayed period, very thin, fatigue, heartburn by the age of 8, etc.) But I realize it would have been impossible back then to have cornered this..... Still---I struggled at school, and had a lot of other problems that could have been easily fixed.
I'm already pinpointing other people in my family who probably suffer from this and don't know it. I'm amazed at the lackluster reaction I get when I share my diagnosis with them. A celiac soon realizes how un-interesting their condition is to everyone else.
I realize my tolerance to alcohol has changed...and my immune system seems a little sluggish as I transition to a new normal.
I hope some of you are nodding your heads as your read this..
Please add some of your own observations...
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MEH added a topic in Celiac Disease - Coping WithOverwhelmed.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.
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MEH added a topic in Celiac Disease - Coping WithChicken Broth----And Another Question....I got glutened tonight from chicken broth. This month has been so hard, trying to figure out what to eat. I travel for a living, was in Central America for three weeks, and it has been interesting navigating this new way of life when I have to eat out every night.
I'm home now and made soup and looked at the ingredients on the box. I checked on line to see if the broth I was using had gluten...it said it didn't.
Is chicken broth tricky?
Also: If I eat gluten, within an hour a very bad headache starts and gets worse as time goes on.
Does anyone else experience it this way?
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MEH added a topic in Celiac Disease - Coping WithDry Eyes, Too?For the first time ever today, I was able to wear contacts without wanting to rip them off of my eyeballs! So, a gluten free diet, (I understand by doing a little research), helps dry eyes, too?!
Am I going to turn into Julia Roberts tomorrow? Do the benefits ever stop?! There are things happening to my body that I didn't even think would happen. The dry eyes thing is a bonus! I hate wearing my glasses all of the time.
Question about testing:
Is there anyway for me to tell if I am a celiac vs. a sensitive? Are there certain clues--certain symptoms that seem to lean towards one vs. the other?
Should I get testing done? Are there benefits to knowing for sure, or is just feeling like a human being for two days in a row enough?
Also, does one just keep feeling better and better the longer they remain gluten free? Will I feel even better two or three months for now?
And how bad are my "ooops, I ate gluten" moments? Getting the hang of this is hard.
Thanks for your patience!
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