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Member Since 26 Nov 2012
Offline Last Active Jul 19 2014 08:32 PM

#853700 I'm Done

Posted by on 13 February 2013 - 02:42 PM

Well, I'm not a doctor. And most folks go off gluten and do just fine. But if you want robust studies on food intolerances connected to leaky gut, I would also love very much to see them. I'm desperate for serious medical research into the subject. Until then, we have outlier anecdotal evidence. It's not ideal.

The fact is that fructose malabsorption issues are still not well understood, and their connection to the increased intestinal permeability brought on by damage due to gluten in undiagnosed celiacs has never been a direct subject of scientific research. I do wish they'd get in the ball with it, honestly. Until then we celiacs with odd problems like this are left to look to each other for hunches and advice yo go to our doctors with.

I'm taking my hunches to the Mayo Clinic next month for testing, and have sent away for genetic testing as well to look for other possible causes, since what I have is unusually severe (though two others here have told me they had the same going gluten-free). But I wouldn't have known where to start without folks here passing along their ideas and experiences.

All of which is to say, yes, I totally agree with you.
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#846578 Elemental Diet And Leaky Gut?

Posted by on 03 January 2013 - 09:11 PM

I'd love to know more about this, too. I can't seem to eat much, and the docs here won't put me on an elemental diet because I'm in a US military medical system and they don't support it (the GI used the words "tip of the spear" twice to refer to the medical care available...apparently the elemental diets are far away from the tip).

I tried two of the ones I heard about on this site. The first caused some malabsorbtion symptoms and the second...had trace amounts of casein. Which I'm pretty sure I'm intolerant to.

Do you want the casein one? I'm happy to ship it to you, free of charge -- I hate the thing going to waste. It's sealed, unopened, and supposedly works great. (I can send along the other one but it's already opened.)

PM me if you're interested. I can give you all the details of both and you can see what you think.
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#846302 2Nd Opinion Help!

Posted by on 02 January 2013 - 09:45 PM

Nice to see another ultrarunner here! If you stick around on the boards, please keep us updated on how you're doing on the Sports and Fitness board. I'm having to take a break from training until I heal up. There are some good threads on gluten-free long-run fueling if you search the boards, too.

Did you ever get the celiac blood panel done, too? I had a negative biopsy -- the GI thinks he missed the damage -- but a positive blood test. The GI diagnosed me based on the blood tests and my symptoms and response to the gluten-free diet. You could also get the genetic test.

Anyway -- something to consider. But there is nothing wrong with diagnosing yourself. If you are OK going on the gluten-free diet, and you improve, then you've solved your own problem. The only reason to get a firm diagnosis -- apart from the psychological/social factors, although they are important -- is to rule out something else. Celiac feels like a lot of other diseases, especially other autoimmune diseases.

No matter what you end up having, you may want to get a full nutritional workup regularly to make sure you are getting the vitamins/minerals you need so you can supplement. Ideally you would need them less and less after going gluten-free for a year or so.
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#846301 Just Stumped The Nutritionist

Posted by on 02 January 2013 - 09:33 PM

The Navy nutritionist at the Okinawa military hospital -- who herself has celiac -- was totally stumped by my leaky gut symptoms and inability to eat anything beyond ten foods. "I just keep thinking of solutions that include things you can't eat," she said after nearly an hour in her office.

You and me both, sister. I just told her not to worry, I will get better, and I can probably manage on my own until then. I wouldn't have been so cocky about it, except I have my Larabars, Zing Bars (10 g protein! No soy or dairy!!), and coconut milk and vegan hot chocolate. I can deal with small, boring meals as long as there are snacks to fatten me up.

And today I successfully ate one gluten-free sausage. Only barely noticeable pain! If it still works OK tomorrow, I may be able to add it into my safe list. And then later, maybe eggs...bacon...?

Anyway, nutritionist-bating isn't a hobby of mine. But she didn't know the hidden pitfalls of sushi in Japan -- possible barley sweetener in the rice vinegar, gluten-derived MSG in the nori, not to mention cc. So I unintentionally ended up scaring her out of ever eating sushi again. :o

Sorry -- just had to get this little episode out of my system. And brag about being able to eat a sausage!
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#843563 Trying To Deal But I Just Don't Know What To Do Anymore

Posted by on 17 December 2012 - 05:39 AM

It's expensive in terms of money, but cheap in terms of not feeling like crap all the time. But that still costs money.

The problem is that there is a lot of trial and error. What particular formula of supplement works for one person may not work for another. Very frustrating.

There are some cheap solutions, but I'm not a fan of them. People go on the GAPS and SCD diets. Google them and see what you think. They're cheaper but a little more work. A lot of people here swear by them, though, so that may be the ticket for you.

You could also just identify a few foods that you know are safe and then ferment your own probiotics to add into your diet. If you can handle yogurt, bam -- get some of that extra fortified yogurt Jamie Lee Lewis advertises. If you can't, you can make some kefir in coconut milk or even just water. Search around on the boards for kefir recipes or PM me if you want a recipe.

I'm inclined to try Celiact, a supplement someone mentioned on the boards before. It seems to have all the things you need in one package. But I haven't tried it yet, so I don't know if it's worth it. Seems cheaper than buying it all separately, though.

If you buy probiotics in pill form, but sure to get some that are either refrigerated or freeze-dried. Otherwise, they are likely to not be effective. Amazon has some good freeze-dried ones (my GI approved them) that are gluten free -- again, PM if you want more info on that one. It is already helping quite a bit.

I know it's a lot to learn at once, but I just googled around on this site every spare minute for days, read all kinds of things at pubmed and NIH on celiac, and eventually it started to make some kind of sense. It's all highly technical, I don't really understand it at a biochemistry level or anything, but I get that my insides are torn up, I need help digesting food right now, and I likely have an imbalance of bad bacteria in my gut and a deficiency in key vitamins and minerals. Meanwhile, my body is still attacking my body, because the antibodies I create in response to gluten are floating around in my system for months after I go gluten-free.

When the antibodies get out of my system altogether, then I have a chance at healing up. The rest of it seems to be a way to give my body a leg-up in the meantime. And I'm all for that.
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#843305 The Celiac Disease And Infertility Connection - Sheknows.com

Posted by on 15 December 2012 - 10:59 PM

As someone with unexplained infertility and recently diagnosed with celiac (no thanks to doctors -- but blood-test confirmed elevated tTg), I want to know when I can start trying again. I've already had my miscarriages, and there's no point in just getting more of them. Is it when tTg is back down?

Science, why are you so slow?

This is not encouraging advice, folks:
“Apart from strong anecdotal evidence, there’s no published research data out there yet that proves fertility improves on the gluten-free diet,” Woodward says. “For those with celiac disease, overall health dramatically improves once they go gluten free, so it is reasonable to assume that fertility would be positively impacted, as well.”

It's just -- uh...no one's bothered to do a major study on this yet, so...we'll just assume it's fine.

Does the forum here have any thoughts on this? I need to do a deep-dive search, but the issue is *way* too emotional, so I'm not really into reading detailed miscarriage and infertility issues right now. (I'll be ready for it when my unborn children graduate college.)
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#842879 Six Natural Foods That Work For Me. For Those Scared To Eat Anything.

Posted by on 13 December 2012 - 10:44 PM

Good list, and thank you for sharing it. It would be great if anyone else with only a handful of foods they can eat without problems could post their safe foods, too, to give everyone else ideas. I'm going to go try fennel now!

A cousin of a friend has severe fructose malabsorbtion, and your list is very close to his. He can eat: exclusively grass-fed bison; rice; fennel; and one other thing I forget. He has only four foods he can eat total, apparently.

For what it's worth --

My list:

rice (soaked overnight)
soaked polenta (soaked overnight)
almond milk
Wow! gluten-free baked goods
homemade pickles

-- I tried supposedly "wild Pacific salmon" and that didn't work out at all...but it was smoked with a glaze, so maybe that was why.

-- Almonds are difficult on my system, but almond milk is OK and I'm planning to try soaking the nuts to see if that helps with digestion.

-- Eggs cause malabsorbtion and so does bacon -- I think it's the fat (not allergic).
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#839518 Sick And Tired Of Being Sick And Tired...

Posted by on 28 November 2012 - 07:20 AM

Thanks for posting this. I'm just 10 days off gluten, so no words of wisdom from me, but I appreciate what you're going through. It seems unfair that some people go off gluten and seem to feel better immediately, and other people take forever.

But you're healing and every week you'll get a little better. In the meantime, please come back here to rant if you need to. There's always someone here also going through it and who wants to listen.

(Argh--I took my hot water bottle to the movies today for back pain.)
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#839427 Nausea?

Posted by on 27 November 2012 - 07:19 PM

Still, a good thread to revive. I'm a week and a few days off gluten, and the constant nausea after eating foods I am 100% sure are safe was driving me crazy. It's nice to know this is somewhat normal. It's a little easier to stop worrying and just accept it's going to slightly suck for a while. (Or maybe my B12 will start kicking in soon?)

Anyway, even if the original poster isn't around, this newbie is glad to have some more advice.
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