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Enzymes For Gluten


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7 replies to this topic

#1 vbecton

 
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Posted 21 January 2013 - 06:39 AM

Haven't been on here in a long time! In lieu of the article Celiac.com put out today about research furthering on a new "celiac" pill, which would be a lab created enzyme to break down the peptides. My brain is swirling. We travel overseas half the year. We are in anywhere from Europe to 3rd world countries. I always get contaminated as eating in some countries is impossible (I almost never have access to my own kitchen). Just got back from Colorado, which is downright amazing for always having gluten-free selections, but even there I got sick. I usually don't think much about it and chalk it up as part of having Celiac. I have some alone time in the potty and move on even whilst feeling nauseous and seeing green going up the gondola! #ihatemyintestines #yolo

My question, do any of you take enzymes that you think help, work, or even allow to you pick around gluten foods and survive a long night without the toilet? Yes, yes, we all know that picking off the toppings of a gluten infested pizza is a death sentence, but when you are in a 3rd world country, sometimes it's your ONLY option. Ive been there so many times I could fork my own eyeballs out! At home, I never get sick. And my intestines love me for it! But, as soon as that 1st airplane meal is served, the dice have been rolled!!!!


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Diagnosed with Celiac Disease, July 2010, after 20 years of chronic low blood sugar and GI issues. I blame undiagnosed Celiac Disease for not becoming a professional marathon runner and being such a pathetic athlete in college. I was robbed :)

Gluten Free 04/2010
Dairy Free 06/2010
Soy Free 05/2010
Legume Free 05/2010
Caffeine Free 05/2007

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#2 Gemini

 
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Posted 21 January 2013 - 10:47 AM

I admire you for your perserverence in travel but my feelings are a bit different than yours. It would be wonderful to have an enzyme to protect against cc while traveling but I always strive to eat safe at all costs. If the option to eat is picking food off of a gluten base then I go without and would not return to a place that posed so much risk to me. I have opted out of certain destinations because I could not guarantee a safe food supply. I am not criticizing you but would hope you might in future take better care of yourself so you wouldn't be sick so often.

I have traveled to Colorado as I have family there but have never gotten sick in Colorado because it's just too easy to eat safely. Traveling internationally is definitely more risky but it can be done safely. I have gotten bagged only twice in many trips but I put a lot of effort into staying well. I get very sick from minor exposure so would rather starve than eat something that might make me sick. I don't think these pills will make it possible to eat gluten without risk but to protect against small amounts of cc...but you still have to try really hard to eat safe food. If you are always becoming contaminated, you might have to rethink how you travel and not rely on a pill that might not work very well.

I use digestive enzymes with my meals to help me digest the gluten free meal well but it doesn't do much for a gluten hit, I'm afraid. I get sick and try really hard not to go there.
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#3 vbecton

 
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Posted 21 January 2013 - 01:05 PM

Thanks for your help Gemini. I guess my post came across as blase toward careful meal planning, but that's not the case. In some countries, we've even done gluten-free reconnaissance missions (ha!) where we know people on the ground where we are headed and they get the lay of the land (restaurants, health food stores, etc...).

Another medical issue that might help you to see my dilemna is I have severe reactive Hypoglycemia and some other ridiculous hyper metabolism issue (of which hasn't been diagnosed yet). So, my diet is high protein, super low carb, no sugars, etc... Seems like meat and veggies would make it easy but in some countries it's hard. I've gone days living on nothing but turkey bites (gluten-free ones brought from home), gluten-free crackers, meat sticks and some veggies. Doesn't seem so bad right? Except for that I almost feel like I'm being starved to death, can't concentrate, and then blood sugar plummets below 40 and then I'm in a pickle. I have to consume a high caloric diet with protein being the main source, then eat every 3 hours. I always bring an entire carry-on of safe foods. It's risky as most countries confiscate my packaged meat when I'm caught. And you can't bring produce. Sometimes that leaves me with nothing but carb things like gluten-free breads, crackers, etc...

So I'm just putting the question out there if anyone has seen anything that works to help lessen the blow. I have literally been "that girl" who is standing in the middle of a souk crying because all I see to eat are things wrapped in pastries, sugary breads, regular breads, sweets, sodas, fruits, and meats laying on breads. Foxhole! I can't have any of that! If I have something with sugar, I had better back it up by a high quality protein within minutes or I'll flat pass out within an hour. Guaranteed. And unfortunately, traveling isn't as much a luxury as a necessity. But, I'd like to see it both ways.
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Diagnosed with Celiac Disease, July 2010, after 20 years of chronic low blood sugar and GI issues. I blame undiagnosed Celiac Disease for not becoming a professional marathon runner and being such a pathetic athlete in college. I was robbed :)

Gluten Free 04/2010
Dairy Free 06/2010
Soy Free 05/2010
Legume Free 05/2010
Caffeine Free 05/2007

#4 myquest7846

 
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Posted 21 January 2013 - 04:53 PM

Just an FYI. I saw an article that says a company by the name of BioLineRX, is doing clinical trials of an oral drug, BL-7010, that is said to mask gluten so that a person's immune system does not recognize it and does not react to it. You may want to check into that.
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#5 Gemini

 
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Posted 21 January 2013 - 06:06 PM

I did not mean to sound like I thought you were being blase' so sorry for that. I am reading your second post and can't believe that you do this! How do you get by without feeling absolutely horrible, with all your food and medical issues? Yikes! I am guessing that your travel is your living? I wouldn't know what to tell you because I have never been in your situation. I know of nothing that can lessen the blow of eating food that can make you sick because with Celiac, whatever you do won't lessen the immune response. Maybe one of those trial drugs will help. You can be the one to let us know what happens!

Good luck to you and safe travels!
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#6 vbecton

 
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Posted 21 January 2013 - 06:36 PM

thanks myquest7846!! I will keep an eye out for this and maybe even offer myself up for trials! i'll also check to see if any trials are going on in my area. right now, 7010 are in preclinicals. exciting.

and no worries gemini! my situation is different. the whole blood sugar thing is a problem. i find that 100x worse than celiac! then traveling. not sure i'm cheerleading for the FDA to approve a drug that could help, but every once in a blue moon the FDA gets it right :)

by the way, you guys put ireland on your list. no matter where we went, there was always a gluten-free menu and every waiter knew exactly what i was talking about even suggesting corn starch alternatives to my favorite shepherd's pie recipes. i'm thinking retirement!
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Diagnosed with Celiac Disease, July 2010, after 20 years of chronic low blood sugar and GI issues. I blame undiagnosed Celiac Disease for not becoming a professional marathon runner and being such a pathetic athlete in college. I was robbed :)

Gluten Free 04/2010
Dairy Free 06/2010
Soy Free 05/2010
Legume Free 05/2010
Caffeine Free 05/2007

#7 Gemini

 
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Posted 22 January 2013 - 11:54 AM

I totally understand the blood sugar problem because before I was diagnosed with Celiac, my blood sugar was somewhat unstable. In fact, now that I think about it, your blood sugar issues may stem from being glutened on a more regular basis than you should be. I have passed out twice from unstable blood sugar but that all went away once I was gluten-free for awhile. Something to think about....

As for Ireland, I've been and you are absolutely correct about the knowledge and accommodation there. Everywhere I went, they knew what it was and they offered up delicious gluten-free bread for me. Warm gluten-free bread. It was a good experience. Well, I would warn you of one thing.....some of their tea's are malted and that's how I was glutened in Ireland. From the damn tea! I had never heard of malted tea before but I know now! ;)
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#8 Girl From Indy

 
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Posted 23 January 2013 - 10:32 AM

From what I have been told, they really don't help. Not with the damage. I was at my Doctor yesterday because I'm in severe reaction from chicken nuggets that were supposed to be gluten free. A company mixed up their gluten-free chicken nuggets with regular ones. They've been recalled, but I ate them Sunday. At this point I just have to be treated as symptoms hit.
If you do hear of something I would love to know, I've got at least 3 more days of labored breathing ahead.
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Diagnosed Celiac stage 4 through biopsy, May 2011.
Gluten Free since April 2010.




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