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Member Since 18 Feb 2009
Offline Last Active Jun 17 2015 12:24 PM

#851244 How To Navigate Living In Asia - Gluten Free

Posted by on 30 January 2013 - 10:14 AM

I lived in Japan for a year pre-diagnosis, and I've always wanted to go back. Being able to manage the diet is the one thing that's keeping me away (I'm soy intolerand now too!)
However, if you've lived there a while and have a decent grasp of the language, it should be easier to at least navigate the supermarket (I can just imagine myself spending 2 hours trying to decipher kanji...)
Remeber: not all tamari is wheat-free, but there are more wheat-free varieties out there than there used to be (at least I've seen some in import shops here.) I believe Kikkoman has one now, but I could be mixing up brands.
Be careful of sauces in general. I'd say buy ingredients as raw as possible and make your own. Also, no seasoned nori (usually has soy sauce= wheat)
Oh, and aparently someone there is making gluten-free ramen/soba/etc noodles. They have some at the Japanese food store here in Toronto. I can't remember the name, and I haven't tried it yet, but you might be able to ask around.
You can do tempura with corn starch and/or rice flour.

Anyway, as Shadow said, don't go off the gluten until your testing is done (which means time to go out and enjoy whatever you can.)

Good luck!
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#835248 Newbie Here, 11 Months Since Going Gluten Free And Still Bitter?

Posted by on 08 November 2012 - 10:56 AM

Hi Amanda
I can't even imagine the long, slow, painful road you've travelled to get this far, and after all those years of misdiagnosis, I don't blame you for being bitter.
Welcome to the forum. This is definitely the best place on the web for information and support, and hopefully we can all help. Sometimes just having someone to rant at and tell you you're doing the right thing is helpful.

You ARE doing the right thing. and keep doing more of it.
After that many years of doubt and uncertainty from doctors, family, and yourself, it can indeed be hard to trust what you know has to be done. The gluten free diet (and free of anything else you can't tolerate) is a life-long committment and must be as strict as possible. You have to drill it into your own head, and your family's head, that the smallest amount of gluten can harm you. You know you're getting better, and you're taking things seriously, but everyone else around you needs to do so as well. The more supportive they are, the more helpful in minimizing the amount of gluten you could come in contact with (all those crumbs on the counter, etc), the healthier and happier you'll be.

It's going to take a while longer before you will heal completely (and some of us are never 100% again, but compared to how things were before, 90% is great!), and that will take hard work, but it will get better! You'll get used to your diet, get your family trained to clean that counter, and begin to trust your own judgement (and probably teach your doctors a thing or two in the process).

So, say strong, stay away from the evil gluten, and we're here for you.

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#835015 Nail In The Quinoa Coffin

Posted by on 07 November 2012 - 10:27 AM

Eep! Genetically modifying it isn't going to help! People are crazy....
Sorry to hear about your flax problem. That something I should be eating more of.
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#835014 How Do I Know If I'm Healing Or Ingesting Gluten?

Posted by on 07 November 2012 - 10:21 AM

Hi Megsy
2 weeks is early days. A little gas and (almost) D is nothing to worry about too much. Keep at the diet, and things should settle down. You're healing, and your gut is adjusting to the fact that you aren't feeding it what you used to.
You can, as others have suggested, take probiotics and a good digestive enzyme (make sure both are gluten-free). That will help you digestive system adjust.
I'd wait 6 months until you worry about whether something else (like milk) is bothering you. But to be honest, even if you're perfectly gluten free, we all get a little bloated sometimes.

Happy Healing!
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#827432 Why I Still Eat Bread...

Posted by on 04 October 2012 - 09:24 AM

If you were indeed not eating gluten when you had your biopsy done, and do want to get a definitive answer on whether or not its celiac, you could do a gluten challenge (start eating it again) for a month or so and then get the test redone. But for that you have to be willing to put yourself through a long period of pain and then healing afterward. Because your symptoms are so severe, that's probably not a good idea. I never had a biopsy done because I couldn't stand feeling like crap all the time any longer. I would never put myself through the pain and long road of healing after just to get a confirmed diagnosis.
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#827198 Why I Still Eat Bread...

Posted by on 03 October 2012 - 11:24 AM

Step 1: eliminate all gluten.
Give it a while. See if you feel better. If you do, then you at least have Gluten Intolerance, though it is still possible that you have Celiac if you weren't eating (enough) gluten at the time of your biopsy. But to be honest, that really doesn't matter in the end.

If you still don't feel any improvement after a few months, try (as suggested here too) eliminating milk and soy. If that still doesn't help, then a serious elimination diet might be needed.

In my opinion, the only way you can truly diagnose celiac/gluten intolerance is by going gluten free.

If your family isn't being supportive, then you have to make it clear that the only way you will get better is by not eating gluten. It's not all in your head. It's all in your stomach, and that stomach needs to heal.

We're rooting for you! It's a hard road, but as I said, it's worth it.

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#825964 Why I Still Eat Bread...

Posted by on 28 September 2012 - 06:39 AM

Hi Sandra

Yes, it really does sound like you have an intolerance to at least wheat, if not gluten entirely.
Either way, it's probably best for you to cut out gluten completely for at least 6 months (as suggested) and see if you start doing better. It takes a lot of patience. You won't be 100% overnight. Even if you don't have the damage caused by Celiac disease, your gut still needs to heal and get used to you feeding it different things.
I also recommend doing lots of reading up on the gluten-free diet, Gluten Intolerance, etc etc.
I know its difficult to accept having a condition when there is no medical test to confirm it, but when it comes to food intolerances, you have to listen to your body. If bread makes you sick, don't eat it. It's not worth it. Your body will adjust to not having it if you give it time. Also, even though other wheat products like cereals and such aren't causing a reaction, it doesn't mean they might not be contributing to the problem. For example, if I unknowingly eat gluten-contaminated food, I might not feel any reaction until a couple days later after the damage is done.
I too remember still feeling hungry after non-gluten meals for a while, but I wasn't in pain! So eventually my body healed and adjusted to the new foods I was eating.

So, be patient and be strong. It's a big life change to make, but it's worth it.

Take care!
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#720617 Tinnitus And Balance Problems/mild Vertigo

Posted by on 03 August 2011 - 04:53 PM


This may or may not be linked to my celiac, but I have had tinnitus in 1 ear for over six months, and an increased feeling of unsteadiness (mild vertigo, like being on a boat). I've had some sinus problems as well, probably city-induced allergies, that I've mostly dealth with and still the dizziness.

I'm looking into the causes of this (inner ear issue, possibly a form of Meniere's?), but am wondering if anyone else with celiac has also had similar problems? (or, if you have any advice, even if it's not

I have been sticking to the gluten-free diet for over 2 years and most of my symptoms have gotten better.
I currently have low iron, though (not anemic, but bad enough to need supplements), which may be causing some of the dizziness, and could be due to trace gluten a little too often.

I've done a little research, and hear that a low-sodium diet can help with balance problems (regulate fluid in the inner ear). Anyone have experience/advice on eating a gluten-free and low-sodium diet?

Any help/advice/etc would be great.

Thanks a lot!

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#511765 Random Bouts Of Dizziness/loss Of Balance

Posted by on 18 February 2009 - 10:03 PM

Did you (or anyone else) have dizzy/vertigo spells before they were diagnosed with celiac? In the past couple years I have had a few incidents of mild constant vertigo and a couple serious dizzy spells, though they seem to be caused by sudden elevations of humidity, heat and air pressure. I spent nearly a month feeling dizzy while I was in Japan during the summer (extremely humid), and have had a couple heat-related dizzy spells. I've put it down to dehydration. But could people with undiagnosed celiac be prone to these conditions??? I could be completely off base, but what do you think?
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