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Almost One Year Gluten-Free!


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9 replies to this topic

#1 pianoland

 
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Posted 29 May 2012 - 06:46 PM

My diagnosis with celiac has been a life-changer. My senior year of high school I was always sick with you-name-it: incurable sinus infections, bronchitis, hand foot mouth virus, eczema breakout, and eventually mono which seemed to be the breaking point. I couldn't fight any illness. Continuing into my freshman year of college I was having terrible stomach pain and diarrhea every single night. And you know what...I thought it was normal. I blamed it on the lousy dining hall food and stress.

My first summer home from college something hit me: I'm eating "healthy" (my normal diet full of pasta and bread) but I'm still not feeling right. In mid-July I finally went to my family doctor, thinking it would be inconclusive. It was the first time I heard of celiac disease, but my doctor insisted on testing me for it. After reading about celiac, I knew this was it. I wasn't surprised when I got the call after a few days that I had tested positive.

Almost one year of being gluten free and I am the healthiest I've been since I can remember. My digestion is normal. I can actually fight off a cold now. Simply the amount of energy I had after changing my diet was incredible. I'm forever grateful to my doctor.

I think it was hard for my parents to realize I would have to live this way the rest of my life. But to me, it was so easy because I immediately felt the benefits of the diet. The cure is to change what I eat, how simple is that! Yeah it's a little inconvenient at times. But you know what? People are generally accommodating, restaurants have made huge strides, and grocery stores have aisles full of delicious gluten-free foods.

Anyway, I really want to reach out to the celiac community because in a year I have learned a lot, which hopefully I can share through my posts. It's nice to know that we're not in this alone.
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Celebrating being gluten free since July 22, 2011.

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#2 tom

 
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Posted 30 May 2012 - 01:47 AM

And it's always nice to hear the success stories. I'm sure you can help ppl out, posting your experiences/thoughts etc. I'll never forget how lost & overwhelmed I felt in the beginning. (Long ago now but c.com was godsend)

Welcome to the forum!
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>>>>>>> tom <<<<<<<

Celiac 1st diagnosed as a toddler, in the 60s. Docs then, between bloodletting & leech-tending, said "he'll grow out of it" & I was back on gluten & mostly fine for 30yrs.

Gluten-free since 12-03
Dairy-free since 10-04
Soy-free since 5-07

#3 ciamarie

 
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Posted 30 May 2012 - 09:38 AM

Yes, thank you and welcome. I look forward to reading your insights and tips!
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Gluten-free since the end of October 2011

#4 RockChalkChic

 
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Posted 30 May 2012 - 10:47 AM

Congratulations Pianoland! It's great you are feeling healthy and have made the one-year mark. I am at 6+ months gluten-free and am looking forward to my first gluten-free anniversary! While there are still some times I think, "really? I can never have crescent rolls again, ever??" I have no doubt that being gluten-free has helped me in so many ways. Aside from the obvious digestive improvements, I have less joint/arthritic pain and less anxiety. As a result of becoming hyper aware of ingredients, I have come to appreciate the organic and local food movements. Where as at one time it was a luxury to buy organic or local, now it seems gross and not edible if I come across something with a string of ingredients that I can't pronounce. I think my biggest frustration, along with most other celiacs/gluten-free people, is the ever-changing ingredient lists and sources. Why can't the FDA just regulate the language and call it a day??? Sure it is helpful if the label says "contains wheat" but it does no good to list natural flavors or modified food starch, etc., if we have no idea what is in there.

Now that you're a bonafide gluten-free pro, what would you say are your best pieces of advice for those of us still adapting and learning?
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Negative blood panel
Biopsy "compatible" with celiac sprue
Gluten-free December 2011, with positive dietary response
1st degree relative also with positive dietary response

#5 pianoland

 
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Posted 30 May 2012 - 03:53 PM

Congratulations Pianoland! It's great you are feeling healthy and have made the one-year mark. I am at 6+ months gluten-free and am looking forward to my first gluten-free anniversary! While there are still some times I think, "really? I can never have crescent rolls again, ever??" I have no doubt that being gluten-free has helped me in so many ways. Aside from the obvious digestive improvements, I have less joint/arthritic pain and less anxiety. As a result of becoming hyper aware of ingredients, I have come to appreciate the organic and local food movements. Where as at one time it was a luxury to buy organic or local, now it seems gross and not edible if I come across something with a string of ingredients that I can't pronounce. I think my biggest frustration, along with most other celiacs/gluten-free people, is the ever-changing ingredient lists and sources. Why can't the FDA just regulate the language and call it a day??? Sure it is helpful if the label says "contains wheat" but it does no good to list natural flavors or modified food starch, etc., if we have no idea what is in there.

Now that you're a bonafide gluten-free pro, what would you say are your best pieces of advice for those of us still adapting and learning?


Thanks everyone for the warm welcome! RockChalkChic you are so right with the awareness of ingredients. Our pantries have never been more full of organic and fresh foods. I'm also really frustrated with the labeling. If it says modified food starch I cringe (if it's labeled gluten free I accept it as gluten-free). I actually just wrote to Congressman Richard Hanna about the Gluten in Medicine Identification Act. Gluten is hidden everywhere and we have the right to know about it!

In general I think we need to remind ourselves that we're not an inconvenience. We deserve to eat as safely as possible and if that takes a little extra effort at times, then it's worth it.

More specifically, I would recommend keeping a detailed food log. I set up an excel file with the date, breakfast, lunch, dinner, snacks, and if/when I had a reaction. I discovered A LOT by keeping a log for a few months, such as stay away from Puffins rice cereal, apples, peppers. It also helps show the balance of protein/veggies/fruit/carbs. I noticed I've been eating way too many rice-based foods. The rice bread/pasta/crackers are high in carbs and don't keep me feeling full. Going to try to replace that with more protein!

If there is any specific advice you're looking for, feel free to ask. I also want to make a post at some point about how to cope with a gluten-free diet at college. It was hard to get things started because there wasn't much info online about what other college students are doing. But it really improved at my school after I dug my heels in. I've become so passionate about the topic!!
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Celebrating being gluten free since July 22, 2011.

#6 RockChalkChic

 
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Posted 31 May 2012 - 05:00 AM

Thanks everyone for the warm welcome! RockChalkChic you are so right with the awareness of ingredients. Our pantries have never been more full of organic and fresh foods. I'm also really frustrated with the labeling. If it says modified food starch I cringe (if it's labeled gluten free I accept it as gluten-free). I actually just wrote to Congressman Richard Hanna about the Gluten in Medicine Identification Act. Gluten is hidden everywhere and we have the right to know about it!

In general I think we need to remind ourselves that we're not an inconvenience. We deserve to eat as safely as possible and if that takes a little extra effort at times, then it's worth it.

More specifically, I would recommend keeping a detailed food log. I set up an excel file with the date, breakfast, lunch, dinner, snacks, and if/when I had a reaction. I discovered A LOT by keeping a log for a few months, such as stay away from Puffins rice cereal, apples, peppers. It also helps show the balance of protein/veggies/fruit/carbs. I noticed I've been eating way too many rice-based foods. The rice bread/pasta/crackers are high in carbs and don't keep me feeling full. Going to try to replace that with more protein!

If there is any specific advice you're looking for, feel free to ask. I also want to make a post at some point about how to cope with a gluten-free diet at college. It was hard to get things started because there wasn't much info online about what other college students are doing. But it really improved at my school after I dug my heels in. I've become so passionate about the topic!!



Good for you advocating at your college! I can't imagine being a college student and trying to be gluten-free. Although, it would have saved me many long, miserable hangovers had I known I was celiac in college. I do so miss my wheat beer! haha! The food log is a great idea and I've tried to track my eating using MyFitnessPal. It is a great app/online tool, but even as convenient as that is, it is still so time consuming! The food labeling is my biggest issue. My husband is very supportive but he still doesn't quite put together that I have to watch out for "natural flavors" and such. I am in school now too, but when I finish, I want to try to get a campaign going in my city to educate restaurants. I feel like those of us who are gluten-free can accept that we can't eat whatever we want, but we can be happy knowing that we can eat what is safe, even if there are only a few choices. I called a restaurant one time thinking they would surely have a gluten-free menu, and the sweet but obviously young hostess told me that the chef would be happy to take the gluten out of whatever I order. Sigh...

Do you have any apps or online tools you use for shopping or gluten-free info other than this site? Seems kind of hit and miss ...
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Negative blood panel
Biopsy "compatible" with celiac sprue
Gluten-free December 2011, with positive dietary response
1st degree relative also with positive dietary response

#7 pianoland

 
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Posted 31 May 2012 - 02:53 PM

I'll join you on that restaurant campaign! I hate going to restaurants where they have no idea what gluten is yet they point out on the menu what's gluten-free.

Recently I went to Uno's (their gluten-free pizza is decent) and I asked about the dressings listed on their gluten-free menu. It turns out none of them are actually gluten-free. Uhh...

Another time a local restaurant assured me their fries were gluten-free and I asked if they cooked them in a separate oil than breaded foods...and they said no. (Don't even bother explaining that means it's not gluten-free, they won't catch on.)

I'm sure you've encountered the same level of ignorance. I try not to let it frustrate me but typing this out I'm getting mad. lol.
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Celebrating being gluten free since July 22, 2011.

#8 kareng

 
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Posted 31 May 2012 - 02:58 PM

I'll join you on that restaurant campaign! I hate going to restaurants where they have no idea what gluten is yet they point out on the menu what's gluten-free.

Recently I went to Uno's (their gluten-free pizza is decent) and I asked about the dressings listed on their gluten-free menu. It turns out none of them are actually gluten-free. Uhh...
.



Why do you think Uno's is serving dressing with gluten and saying it gluten free?
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#9 MinnesotaCeliac

 
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Posted 31 May 2012 - 03:05 PM

Congrats pianoland on the upcoming one year anniversary! I'm a month away myself. Your positive attitude shows in your post and will help others see that a diagnosis of celiac is not a negative thing, but a life change for the better. Keep sharing your knowledge and positive attitude!!!!
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#10 pianoland

 
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Posted 31 May 2012 - 03:56 PM

Thanks minnesota, that's what I'm going for! Congrats to you too!

Kareng, when I asked the Uno's waiter about the dressings, he said, "We can't guarantee that any of our dressings are gluten free." I'm still puzzled why they are listed on an exclusively gluten-free menu. Might need to look into it more to get a solid answer.
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Celebrating being gluten free since July 22, 2011.




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