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Member Since 25 Mar 2010
Offline Last Active Apr 26 2013 06:58 PM

#714427 What Good Things Have Happened To You Since Being Gluten Free

Posted by on 05 July 2011 - 04:54 PM

I feel like another person!

- So much more energy. My bedtime is no longer 8.30pm :-) I used to feel permanently exhausted
- balance immensely improved. I no longer walk into things.
- brain fog lifted. My short-term memory is mostly back.
- heartburn, bloating, black shadows under my eyes - gone
- no more stomach aches. I thought that was how we knew we'd eaten. Now I notice my stomach no more than, say, my elbows.
- no more weird blotchy rashes
- my feet used to always hurt first thing when I got out of bed. Now I can jump out of bed, no pain.
- I'm no longer constantly thirsty. Doctors could never work that one out, they just made me have yet another diabetes test but those results were fine. I used to have to live with the constant thirst, because otherwise I'd drink 5+ litres of water per day and still be thirsty and it was bordering on dangerous.
- most recently, I've found that I'm happy to wear my hair loose. I used to hate the feel of it on my face, and I've worn it pulled back in a pony-tail near my entire life. Now it doesn't bother me. I have no idea if it's connected.

Also, I got back from the doc this morning and my bloods were awesome - vit D up, B12 up.
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#706414 Your Top Two Pieces Of Advice

Posted by on 06 June 2011 - 03:57 PM

1. This is one of those 'all or nothing' things. You cannot have any gluten again, ever. But don't try and wrap your head around this all at once. Take it one day at a time, and those gluten-y products start vanishing from your improving selective vision.

2. When eating out (or with other people) judge your audience. What I tell people about what I can and can't eat depends on the situation and how receptive I think they'll be. I don't care if I'm not being scientifically accurate, I just want to get out without getting sick or making a huge fuss. If it's easier to imply that I'm just not hungry, am trying to lose weight, will start throwing up, or will go have peanut-style allergic reaction, so be it. It's good to accurately educate people, but it can get boring and exhausting.

(I was away at a 2 day training thing last weekend and I had to cater for myself. Every meal I sat down with my own, self-prepared food while the other 11 people at the table ate the catered food. They were supportive and understanding and I didn't get sick, but I'm an introvert and my god was it tiring having so many conversations revolve around me)
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#704115 One Year Anniversary!

Posted by on 30 May 2011 - 10:48 PM

So, I've been gluten free a whole year now, woot! I couldn't imagine living the way I did before.

Walking around the supermarket the other night, I realised that so many foods I used to have to purposely not look at (because to do so would lead to an overwhelming desire to throw myself on the floor and sob WHY!) are now as invisible to me as the pet food section.

I feel comfortable with meal choices, there are enough places I know I can eat out at (though I'm saving a fortune by eating out so rarely) and enough people know that I don't have to have a conversation about it every time I turn around.

Best of all: my stomach no longer hurts, I can hold onto thoughts in my head and I don't walk into thing! Yay! I haven't had heart burn in a year; I used to live on antacid tablets. A dozen other weird, minor and seemingly inconsequential things have resolved, thereby improving my quality of life.

Thank you, thank you, thank you everyone here. If I hadn't been reading these boards before I went gluten free, I wouldn't have given it a proper chance. My testing was all negative, and while my GP has been very supportive and happy with my results, I wouldn't have gone gluten free if I'd only listened to her. I also would've ended up being one of those dreaded "gluten lite" people, because I wouldn't have understood the importance of being in 100%, or the risks of cross contamination. I wouldn't have found out the issues I had with other foods, as it took feeling great being gluten free to realise when other things weren't right.

Sure, it sucks at times not to be able to be free and easy with food. But that wasn't working for me, and doesn't work for a lot of people. This has forced me to slow down and THINK about what I'm putting in my mouth, and that can only (and is) leading to better health. I am very grateful for you all and wish you all all the best in your recovers, whatever stage you maybe at now. It does get better :-)
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#696227 Getting Enough Fibre.

Posted by on 01 May 2011 - 04:12 PM

I thought I wasn't getting enough fibre even though I ate heaps of veges but it turned out to be because I was eating the wrong fruits and veges. I have problems with frutose, fructans and sorbitol malabsorption so I'm mostly following a low FODMAP diet. Cutting out onion made the biggest difference.

I saw a dietitian and she said my fibre intake was fine, but the symptoms from these malabsorption issues can make you think you aren't getting enough.
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#695817 Finding Out Something I Was Told Was Gluten Free, Actually Isn't?

Posted by on 29 April 2011 - 04:02 PM

Jenn, I'm so sorry you got so sick from it but it is kind of cool you were sick on their front lawn. That should really help the next gluten intolerant person who comes by. I'm sure that chef will be SUPER careful from now on!
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#663078 Christmas Goodies... Aiaiaiaiai

Posted by on 25 December 2010 - 04:42 PM

I just appreciate the thought and find someone else to give it to. The people who really know me would never give me that stuff. I'm sure I've given my share of misguided gifts throughout life.

I do too. Plus, they'll never realise but in giving me a box of chocolates with "may contain" warnings that I won't eat they have (a) expressed kind appreciation to me through their gift and (B) saved me going out to buy similar gifts for other people since I've just been passing them on. Anything to keep me away from having to go christmas shopping is highly appreciated, more so than any happiness I'd have gotten from actually eating those chocolates :-)

(and these gifts are all from people who really don't know me - mostly my brownie guides' parents. I'd be annoyed if they were friends or family)
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#654931 Poll: How Were You Diagnosed? (Or Were You?)

Posted by on 20 November 2010 - 06:39 AM

I voted "by myself (elimination diet) - tests were negative" . But I wanted to add that my doctor supported me going gluten free as she she said she'd seen a lot of patients see improvement. She encouraged a grain free, dairy free diet but I haven't managed that yet :-)
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#652031 How Strict Does A Gluten Free Diet Need To Be?

Posted by on 08 November 2010 - 06:28 PM

Since my blood tests for celiac were negative, the doctor told me I do not have celiac disease but may just have a wheat or gluten intolerance. She said that I should try cutting back on wheat a bit and see if that helps my symptoms.

My question is, will just "cutting back" be enough to give an improvement, or do I need to cut it out totally. My Doc says some people can tolerate small amounts, so it shouldn't be necessary to cut it out all together - she only recommends that to people who test positive to celiac.

For those of you who are gluten intolerant but not celiacs, have you found a difference from just cutting back a bit?

I'm gluten intolerant; tested negative for celiac and don't have the genes. Seriously, try going entirely gluten free. I probably wouldn't have but for the encouragement to do so that I got here to do it thoroughly and properly, and omg did it change my life! So many random, bizarre symptoms totally resolved. I will eat like I have celiac disease for the rest of my life, no question. I could never go back to feeling like that and getting glutened is awful now. Plus, I think psychologically it's easier being all or nothing about it.

The first time I got glutened was via frying oil. It was maybe 3 weeks into being gluten free. My fries were cooked in the same oil as a breaded product. I knew this in advance but thought I'd be fine as I don't have celiac disease and I made sure not to eat any random crumbs, just the fries. Ha! I was so sick.

I have a friend with celiac disease and I'm actually a lot more sensitive than she is. About the damage it does - I really don't know. But I do know that I get bad neuro symptoms if I eat gluten (mostly balance related) and they've resolved on a gluten free diet. That fits with research findings. Whether I test positive or not, I'm not going to risk doing more neuro damage because that scares me way more than any short term satisfaction I'd get from eating something gluten-y.
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#651659 Does Anyone Like Being Celiac

Posted by on 06 November 2010 - 11:35 PM

Funny you started this thread. Yesterday I got the results from the genetic testing. Everything came back neg. I was disapointed. The gluten free diet does make me feel better (dx'ed non celiac gluten sensitivity). But I know that my family will think I can cheat because I don't have a REAL disease. If I could tell them that I have celiac, there would not be any hassle about meals for the holidays. I can hear them now asking why do I always have to be weird and different.

Ha, I was the same when I got my gene test results. I know I can't eat gluten, it would have been nice to have a concrete reason why. Oh well, I'm just waiting for science to catch up with how I feel.
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#650349 Are You A Celiac?

Posted by on 31 October 2010 - 06:12 PM

I say, I don't eat gluten because it makes me sick. Then people either (a) ask me if I have celiac and I say the tests say no but since I have to be strictly gluten free, it doesn't matter much either way or (B) they say what is gluten? and I say that it's in wheat, barley and rye and give them a brief run down on what it does to me. I find a lot of people take the opportunity confess that they didn't really know what gluten free meant and since I didn't really either before it's nice to be able to explain so they don't feel stupid next time.

Wheat is my country's biggest crop and it still feels a bit odd that I'll never eat it again. Wheat as an ingredient I'm used to thinking of as evil nastiness, but those fields of waving grain are supposed = wholesome goodness!
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#635161 Guess What Guess What!

Posted by on 27 August 2010 - 02:45 PM

Yay! :D
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#632828 "gluten Free Is All The Rage Now"

Posted by on 18 August 2010 - 03:49 PM

As Ravenwoodglass said, you very likely have gluten ataxia. Here's a couple articles you might find interesting about neurologic diseases related to gluten in the absence of GI involvement. I'm happy to hear you figured it out!


Researchers like Maki think that a lot more people than just folks with a formal celiac diagnisis tend to feel better off gluten. Nobody has a firm number, but I bet it's as high as 1 in 10 among people of Northern European descent who have the genetic tendencies for celiac.

Thank you both, and for the links too! Very interesting reading. There are so many pieces to this puzzle.

I fit very solidly in to the Northern European category... I'm of english and irish background. Given my symptoms, I was quite surprised I didn't share the gene. Maybe it'll be clearer after a few more decades of research. I'm only 33 - who knows what we'll know when I'm twice this age.
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#631244 1 Month Gluten Free - Still Some Hiccups

Posted by on 12 August 2010 - 04:54 PM

1. The mental "brain fog" isn't getting any better, and my short term memory...... Forget about it, it doesn't exist. Period. I'm absolutely unwilling to accept that this is how I'm going to function mentally from now on. That's not going to happen. Does anyone else feel this way?

My doctor put my on nystatin for candida/yeast overgrowth and that has really helped with the brain fog, which had lasted even after I went gluten free. Might be something to consider?

2. The muscle fatigue is like nothing I could have imagined prior to a year ago. I can't squat down to play with my nieces without feeling like my legs are going to give out on me as I try and stand up. This one breaks my heart. I don't even recognize my body in the mirror anymore.

My endocrinologist was nagging me to lose more weight (I have insulin resistance) and when I complained that I was physically exhausted all the time he tested my vitamin D and it was insanely low (2, should be 50 with 70 optimal). I hadn't heard of the symptoms of vitamin D deficiency before but they include muscle fatigue. I live in a very sunny place and I never dreamed I could be Vit D deficient, I was more concerned about avoiding skin cancer. I don't drive so I'm outdoors walking to the bus stop etc, so getting more incidental sunlight than a lot of people would. So I would urge you to get that tested. Low vitamin D is associated with some awful things.

Hope this helps - all the best to you.
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#631242 Too Much Time On My Hands...

Posted by on 12 August 2010 - 04:39 PM

I have to wipe all the grumbs off of my son when he gets home from school.

I haven't really been around any little kids since I went gluten free, but omg, I can imagine what this is like! You'd almost want to hose him down in the front yard :-)

Glutenectomy, what a glutenewbie needs to do to their kitchen, also what loved ones go through after a gluenewbie diagnosis.

Haha, yes, my kitchen needed a very thorough glutenectomy.
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#630984 Too Much Time On My Hands...

Posted by on 11 August 2010 - 06:35 PM

Grumbs (gluteny crumbs). Grumbs make me grumpy :-)
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