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About lob6796

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  1. Happy birthday and may God bless you today!

  2. I asked if I could do mine awake and they told me that unless there are extenuating circumstances, they won't do it with you fully conscious. It makes their job more difficult. I am deathly afraid of being put to sleep, but they don't actually put you under anesthesia, they just give you enough medicine so you don't care what they are doing to you. They did it to my daughter and she was even talking to me and could identify pictures in a book (they went in the other end-different procedure). You don't remember alot of what happened, but you aren't actually asleep. Basically it is like you are drunk and can't remember most of what you did the night before They did say to be sure someone came in with you who could take notes, because alot of times you don't remember what the doctor says. Mine is Wednesday, I'm nervous!
  3. I'm assuming you mean you are going to the Grand Canyon? You can try "In and Out" a burger joint that has a dedicated fryer and they specialize in "protein style" burgers served wrapped in lettuce leaves. "La Tovar", "Bright Angel", and "Rod's Steakhouse"can accommodate gluten free (call ahead). There are alot of chain restaurants that do gluten free menus as well like PF Changs (which is out that way). Outback steakhouse, Bugaboo Creek also do gluten free menus but I am not sure if they have those out that way. Alot of foods are naturally gluten free as well, just check the ingredients list. A few fast food joints do gluten free, you can check out their menus online. And don't despair, there are great pastas, pizzas, and breads out there that are gluten free. Whole Foods/Wild Oats will become your best friend, since they have such a large array of gluten free foods it is overwhelming. It seems awful at first, but once you learn what to substitute with what, it isn't so daunting.
  4. I would get the checkup. If only just to tell the doctor that he is doing well on the diet, etc. The doctor may have reasoning besides looking at antibody levels for wanting to take blood. At a young age, it is easy to have malnutrition problems. He may want to check certain vitamin/mineral levels in his blood to be sure they are back up to normal again. This is important. I also think it is important to re-do antibody levels so that a) you know for sure there isn't a small amount of gluten still slipping through (at 27 months he could have minor symptoms he isn't expressing and you can't see) and so you have a baseine to go off of if he ends up being sick sometime in the future, they can recheck the levels and if they are gone up, they know what the issue is. I don't like watching my kid scream and cry and get poked, but I would rather 2 mins of discomfort than for me to have missed something because she "seemed ok".
  5. Like others have said, no the US government does not provide financial assistance for gluten free foods. The reasoning is that you do not NEED to buy special foods for the diet. Maybe you can't eat your favorite foods anymore, but there are plenty of naturally gluten free items that will provide proper nutrition and that is the US guideline. You can get an official diagnosis of Celiac disease and then claim your gluten free purchases as a tax deduction at the end of the year (a loaf of bread is $2, gluten free bread is $5, you can deduct the $3 difference) as long as combined with all of your other medical expenses you have spent over 7.5% of your adjusted gross income.
  6. Yes, I've posted about them myself before. They are very sweet people. Their daughter was diagnosed with Celiac about the same time they went to open the restaurant, so they decided over time to make their restaurant a place where gluten-free people could go and just enjoy. And when they say they have gluten-free menu, they MEAN it! It is a FULL menu. From appetizers to pizza, to italian food and burgers, dessert and drinks, they carry it all. And they don't mind sharing what other restaurants in the area carry gluten-free foods either. The owner or the chef normally comes out when they hear you are gluten-free and chats a bit, offers a bit of comforting info about how they do gluten free things, etc. Great group of people. They teach all of their staff about the importance of avoiding CC as well. They actually hosted a Celiac meeting recently there just to help people become more aware. Oh, and the chocolate truffle... to die for
  7. Alot of soy sauces at the store don't actually have soy in them. You might try over at whole foods to get the best selection. I was there yesterday and I saw some without soy.
  8. I agree! I bought some Tinkyada pasta to give it a try before going gluten-free and yum! It tastes just like regular pasta to me. I did cook it a tad longer, but the bag says you can overcook it as much as you want! It was awesome.
  9. Do you think this recipe would work as a substitution? 1 1/4c GFF (rice flour, potato, tapioca) 1/4c tapioca flour 1/2 c potato flour 1/4c corn starch 1/4 c rice flour 3 tsp guar gum 2 tsp active dry yeast 1 tsp salt 2 egg 2 egg white 1/2 c water 1/2 c almond milk 2 tbls veg oil 2 tbls honey 2 tsp vinegar
  10. He isn't going in just for the biopsies, although he will be doing them while he is in there. My physician wants to check for any other possible problems as well since I have so many stomach issues. He wants to know what is the celiac, and what is possibly another problem.
  11. So I can eat whatever I want still. No, the biopsy didn't come back negative... it didn't come back at all! My mom and dad drive me up to Portland for the biopsy yesterday. We went early so I could go to Whole Foods beforehand and stock up on some gluten free supplies. That place is huge btw. We all actually had a pretty good time in the store, I think it was a good experience for my parents to see how many gluten free options there are out there. So we head over to the GI place. They're super nice, I check in and a little while later a nurse comes out and gets me. Takes me into a room, we go over my whole medical history in detail, then she sends me to the back where I meet my "prep and recovery" nurse. Change into the oh-so-fashionable johnny, and I wait for her to return. Now at this point my stomach is doing crazy flip flops. For one, I hadn't had anything to eat OR drink since 10pm the night before, and the other was me freaking out that they were putting me to sleep. So when the nurse comes in, I ask if I can do the procedure awake. She laughed and told me no, but she was nice about it at least. Gives me my IV and I sit and wait another 15 mins or so. My tech comes and wheels me into the operating suite. I sit and talk with him in there for seriously at least 20 mins. Then the other tech comes in at that point and gets me all hooked up to the machines, asks me what flavor numbing lollipop I want, and we are good to go. The doctor comes in, says hello to me, sits down with my chart for a second and.... Up he goes. "you have Von Willebrand's Disease?"..."yes"... and out of the room he goes. 20 minutes later he comes back in shaking his head. He informs me that he was just on the phone with my hematologist and that I am not allowed to have the biopsies. ....EXCUSE ME???.... He proceeds to inform me that my physician never called to clear it through my hematologist and of course I can't have biopsies done - they are going to be cutting small chunks out of my intestines and (kicker) I could bleed to death. Super awesome! not. So, what he set up with my hematologist is that they are going to schedule (god I hope next week) for me to go up to her office, sit and have a transfusion of Humate P, then go over to HIS office, have the biopsy done, then go back to HER office the next day and get another transfusion. At $23,000 a pop. Joy. So then the doctor calls my physician's office and gives them hell for not keeping my best interest at hand and you know what they tell him? "We didn't know she had Von Willebrand's Disease" I was stunned when he told me that. I'm like "it is in my chart and I wear a Medic Alert bracelet for crying out loud" he goes "I know, thank god at least you wrote it on your intake form when you came in". So at least this new doc has a brain in his head. The other people.. who knows. So I get to do it alllllll over again. My poor mother was in the waiting room freaking out because they kept telling her I was still in the surgical suite. She's like "it is a 10 minute procedure!". By the time I got to recovery, I almost fainted from lack of drink/food. It was like 4pm. My surgery time was 2pm. At least they fed me And so continues the saga...
  12. Wheat may be required to be listed, but just about everyone on the site can tell you that it can be hidden in alot of things, and that ALOT of products do NOT list all of the gluten in their products.
  13. I'm no help since I live in Nothern NH but I just wanted to say hello to a fellow NH Celiac Actually, I can help! The Seacoast Celiac Support Group is run by a great bunch of folks. They actually came up here not too long ago to give a bit of a speach and they had so much info. You can email Dan Davis at djdavis@mediaone.net or William Muzzey at munroe@nh.ultranet.com - I am sure that either of them would know of some great doctors in your area. They have a newsletter they send out with a TON of great celiac info, updates, etc. Good luck to you!
  14. I am half sure that kashi go lean's protein shake is gluten free. I'm also pretty sure it is dairy free. The problem is that is made of soy, which tends to make me run as fast as I can to the bathroom. Does anyone know of a protein shake/weight loss shake that is gluten, dairy, and soy free? thanks!
  15. I was thinking of getting the Kashi Go lean powdered mix, at least to start out so I am getting proper nutrition while I figure out what foods I can eat, plus I figure it might help me lose some weight. This is the ingredient list. Soy Protein Concentrate, Evaporated Cane Juice, Gum Acacia, Cocoa Treated With Alkali, Calcium Carbonate, Natural Flavor, Calcium Phosphate, Soy Lecithin, Carrageenan, Chicory Root Fiber, Magnesium Phosphate, Uva Ursi (Bearberry Extract), Ascorbic Acid (Vitamin C), Grape Seed Extract, Panax Ginseng, Niacinamide, Alpha Tocopherol Acetate, Calcium Pantothenate, Zinc Oxide, Vitamin A Palmitate, Pyridoxine Hydrochloride (Vitamin B6), Riboflavin (Vitamin B2), Thiamin Hydrochloride (Vitamin B1), Whey Caseinate, Folic Acid, Biotin, Potassium Iodide, Sodium Molybdate, Vitamin K (Phytonadione), Sodium Selenite, Vitamin D, Vitamin B12 Diabetic Exchange: 3 Very Lean Protein & 2 Starch Kosher Certification: OU - D Any hidden gluten here? Thanks!
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