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vbecton last won the day on August 1 2010

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About vbecton

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  1. vbecton

    Enzymes For Gluten

    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!
  2. I would! Only because of my lifestyle. When I'm home in my own country eating gluten isn't necessary. When I'm overseas, it's sometimes unavoidable. And only because I have other medical conditions that further restrict my diet to a paleo type diet (but no fruit for me). When I'm in a 3rd world country and all that's available in a village are some pastries filled with meat...that pill would help. Otherwise I eat from my "prohibitive" meat sources I've smuggled over the border. Sometimes my stash gets confiscated, but I always risk it because I've been caught too many times in small villages and no food source. So, bring it on!!
  3. vbecton

    Enzymes For Gluten

    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.
  4. 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!!!!
  5. vbecton

    Abnormally High Hunger Again!

    Your situation sounds like mine. I eat nearly 4000 calories per day and feel (most of the time) like I'm being starved alive. I have good days, but even those I don't eat much less than 2500 calories. I've had low blood sugar problems my whole life. I went gluten free 4 months ago and they seemed to resolve. Now, it's coming back. My diet is clean with whole foods. My doctor is in the process of checking me for multiple issues, one being my pancreas. I've recently noticed undigested foods in my stool. I was just treated for SIBO, so that helped my hunger just slightly. Has your pancreas been checked out? I just had a fat stain stool test and mine came back with high split cell fats, so I'm not absorbing. Malabsorption at its finest. Next, I'll be doing a 3 day stool test to measure overall fat dumping (literally). That will give clues as to how my pancreas is performing. Maybe you have the same issue? Sorry I can't give much advice, but I do understand. It's a pain eating like a pro-sumo wrestler full-time!
  6. vbecton

    Doctors In Houston?

    Try looking at this site: http://www.houstonceliacs.org/ Scroll down to Medical Advisors. Janet (the leader of the Houston support group) is very knowledgable and I'm sure everyone on this list is highly recommended for Celiacs. Someone on that list is bound to accept BCBS. Good luck!
  7. Wow, I'm so happy to know Disneyworld considers intolerances/allergies! Very good info to know. I'm intolerant to all the above as well, but by far the worst was soy. I think it's because once you take out gluten, then dairy, anything left that is processed will be made with soy. So, I consider soy the worst Eating gluten & dairy free are easy, but adding anything else to my list was overwhelming!!!!!
  8. vbecton

    Stupid Things People Say

    I'm with ravenwood. If someone says that comment on a bad day, I'll blow a gasket. In fact, last week I went to the hospital lab for my monthly blood work (vitamin levels, etc...) and the intake lady looked at my lab sheet and said, "oh, 'weight loss', that's a convenient problem...poor you!" And she was very sarcastic. I kindly replied, with a sweet smile, "I'm happy to switch places with you for a week and you can have my explosive, uncontrollable D, muscle aches, and chronic nausea after every meal." I hope you get your answers. I'm not as shocked that an intake lady at the hospital was so insensitive about my medical issue as I am about a neurologist who clearly is uneducated. That's a scary realization!
  9. vbecton

    Pooped Out Pancreas?

    Good info! My doc did mention there was a qualitative and a quantitative test. There was so much information talked about during our meeting that I can't remember my head from my tail, but I do remember him saying he wanted a full 3 days of specimen to get an average of fat. But, I'll email him to make sure he's looking for both types of fat. Did you have undisgested food in your poo? I am just noticing this myself. I usually don't inspect my goods, I just check the color, the size and flush .
  10. vbecton

    Pooped Out Pancreas?

    Thanks ravenwood, I guess we are on the right track with the stool testing. My GI said the blood testing was too non-specific to really give us anything to go on. He also said the pancreas isn't easy to diagnosis. There are lots of things to rule out first, unless it's an acute problem.
  11. Went back to the GI doctor yesterday for test results. I'm steadily getting worse. My bowels are in full-attack, military distress, calling all cars mode!!! Can't hardly leave the house for fear of "D" as I never know when it's going to strike. It's the sneak attack D, the kind without much warning. The doctor thinks my pancreas could be the problem, but he's treating me currently for SIBO (& Giardia for good measure), then he'll do my colonoscopy in 10 days to check for colitis. Here's the deal, I'm dropping weight, but eating 3500 calories per day. All food makes me sick, I eat anyway. My bowels contain large chunks of undigested foods. My malabsorption continues to be a major problem (amino acids, some vitamins). I turned in a stool sample today to test for parasites (that was my request ), and a Sudan Fat Stain, which I think my doctor wants as a baseline? What tests do you know of that could test for a faulty pancreas? One that obviously can't supply the right enzymes to break down food? My GI said something about a 3 day stool sample that would measure fat dumping. I'm determined to find the culprit...so bring on the suggestions!
  12. vbecton

    On The Couch For 2 Days!

    Hi Chakra2. Thanks for the nutritionist info. I would definitely take the advice of a nutritionist, or dietician. I was referred to a nutritionist, but her prices were astronomical just for a consultation....and 1 hour at that. I'll look her up. That's actually the area I used to live in. I *heart* Montrose!!! Thanks!
  13. Oh sweet baby jesus! I was actually holding my stomach while reading your story. I'm so sorry you had to go through all of that. And why is it that our husbands are always out of town during the good stuff? I know he must have been scared! And yes, mommies don't get days off. I was in bed all weekend and when I finally decided to peep out I saw the most horrendous sight. Food packages on the living room floor, blankets drug halfway through the house, dog food littered through the pantry, the rabbit cage wide open (knowing full well my dog has been known to kill rabbits), sticky gross countertops with 2 sinks full of dishes, a dirty diaper (pee) on the floor, and so much more. There should be a special maid service for just these types of events! I hope things are looking up for you. I really hope you find some relief!!
  14. vbecton

    On The Couch For 2 Days!

    BTW, I love Australia. I have spent many a' months in that great country, on many trips. I tried to find an Aussie to marry me, but no such luck . Great idea about the stir fry's with noodles. I'll get the cookbook because I need help on the sauces. That seems to be my biggest cooking obstacle...finding sauces that I can use that won't make me sick. Our house is gluten free. Hubby & kiddos eat gluten-free also, but eat some gluten when out (although not much). I'm definiely a fan of almond flour, although I'm not doing much baking. I want the breath test done, but my doctor said there isn't a reliable place here for them as our technology, or way of thinking, hasn't caught on yet. He's definitely a believer in FODMAP intolerance, just not in the diagnosing being used here. I will try the hard cheeses and such. What's the worst that can happen..."D"...What's a little more time with the porcelin goddess?! The benefit of reintroducing dairy far outweights the negative!! Onions are the devil to me also! I can't tolerate them for anything. What about beans? Can you eat any beans? Thanks for all the additional websites!! My bestie lives in Melb and can send me anything you guys might have that I can't get here. And yes, I definitely want a firm 100% diagnosis because otherwise it's like playing darts in the dark! I'm hoping my appt. this week will really shed some light. I missed working out today...I hope this isn't a trend.
  15. vbecton

    On The Couch For 2 Days!

    You are making my brain work...I like it!! I have been reading the Sue Shepherd information, as well as what comes from Monash. I never thought about a phone consult! Good idea. I've got the Patsy Catsos (IBS-Free at Last) book and it follows what comes from Sue and Monash. Although, I don't think the book is highly scientific, it gives the basics. I'm eating bananas (but only 1/2 per day in my protein shake), and some berries, and 1/2 a grapefruit...never at the same meal. I'm eating carrots, broccoli, fennel and some lettuce (green leafy, spinach), pumpkin and potato...maybe a few more too that I'm forgetting. I'm very NEW to FODMAP...like 2 weeks. And the dairy isn't a lactose problem (that I know of), but a whey & casein issue. I can't tolerate those proteins to save my life. Most everyone on the planet can tolerate whey isolate, but not me . I'm refraining from most grains because "they" told me too. ha! Most everyone on here recommends abstaining from grains in the beginning, but I had voluntarily began that because I was following (and loving) the Paleo diet before I started hyperreacting to foods. I'm not much for processed foods anyway. But, I'm not against learning to love them either! I'm going to request a dietician from my GI this week. I've been wanting to see a nutritionist, but they aren't covered under insurance and they charge crazy fees! I think a dietician should be covered and, hopefully, a Sue Shepherd one! Any other ideas, keep'em coming! Give me some more info about FODMAP. What's a typical day of food look like for you?