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AMQmom

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About AMQmom

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  1. My daughter is sensitive and she gets very sick after having any Rice Dream product. She is 8 and will not go near that brand - even ice cream. That tells me a lot! I figure why risk it with my younger child. Obviously if it is making my one child ill, it is doing something to the other even if she doesn't feel it immediately.


  2. My 8 and 4 year old girls and I each wear a bracelet from Fiddledeeids. We are really happy with them. I now make my own bands to hook onto the original i.d. tag so we have all different ones for holidays, etc. Makes me feel better. I do have to tell you, though - the youngest and I have each had our own medical emergencies and the bracelets were not even looked at (I had to point them out). They are looked at by friends and teachers, etc...just not medical team. I asked the ambulance crew about it and they just brushed it off saying that they don't usually check out jewelry (can you believe it??) We are a small rural area, maybe that is why...


  3. I'm one of the one's that mentioned George's - my nutritionist recommended it for me prior to colon surgery. It helps the body heal inside like aloe vera helps your skin heal outside with burns. I give a dose to my children (both celiac) every day. I also find that when my very, very sensitive celiac child gets gluten in her system, loading her up on aloe vera seems to make her feel better sooner (she can be sick for 3 weeks otherwise). If you are not concerned about taste (you mix it in with juice or just tough it out), Trader Joe's has the least expensive jug that I have found. It does need to be refrigerated after opened (unlike George's).

    For my digestive tract condition, when I used it daily, I was going to the doctor every 6 months and it got changed to 12 months. For some reason I slacked off and quit taking it - could be just a fluke, but now I have to go back every 6 months.

    I have no evidence, just children's moods and feelings and my own "miraculous" recovery from major surgery.


  4. If you are ever in the Boardwalk area, I would suggest Spoodles. If you give Chef Marilyn some notice, she can try to get in her gluten free cheesecake (it does have nuts) - YUM! They have many items to chose from and they were all wonderful. We ended up dining there 3 times during our stay! YUMMY tapenade and tapioca rolls, too! We did breakfast and dinner (I do not think that they serve lunch).

    They also have lots of lists available for quick meals/snacks and where to go. If you let them know about your food allergies/celiac, chefs will even call you at home to see what you like. Very nice!


  5. For all of you out there who are sensitive and can relate - my daughter reacts (gets ill) when she has Rice Dream products - including the newly labeled organic "gluten-free" rice ice cream. No doubt that it was this product that she reacted to and she will not go near it now (she is 8 and ice cream usually was a temptation). We have to use rice ice cream because of soy and dairy allergens. I wanted to let others of you out there who react to Rice Dream know that she eats the ice cream and "milk" by Good Karma and has no ill effects. I am thrilled! For those of you with soy allergies - watch out for the Key Lime Pie and some others with "cake" - they have soy flour.

    I called the company to let them know how thrilled that I was not to have to always make her ice creams! We are really happy with the product and their response. I am also able to find the product in mainstream Kroger stores and Whole Foods.

    Wishing you all a healthy summer!


  6. I should have added this to my comment - here are the details that Disneyland sent to me when I asked if they were as accommodating as Disney World:

    When you come into Disneyland go to City Hall and ask them for the Gluten / Celiac list we have available.

    We also have a list for Disneyland, Disney's California Adventure, Grand California Hotel, Disneyland Hotel and Paradise Pier Hotel.

    On the list you will find items like gluten free hamburger buns, hot dog buns, pizza, Mexican food and lots more.

    We do not email out the list because it can change.

    Have a great stay.

    Chef Chris

    C.E.C.


  7. We had a wonderful Disney World experience in April and I already asked them about Disneyland - should be just as detailed. There are forms online that you fill out listing allergies. We had chefs call us here at the house before we left to go over details - it was great. At least two chefs saw to it that their restaurants had my daughter's favorites (one even personally went to a grocery store to get a sweet potato for her). Both of my daughters had their scopes one week after returning from vacation and were completely clear - total remission. I did not let them eat the Rice Dream products, though. Disney serves that brand and we have definite gluten reactions to the Rice Dream ice cream! Again - the attention to detail was outstanding. I had chef emails, phone numbers, calls prior to visit, etc. NO PROBLEMS! I suggest that you go to the Disney website and search for allergen info to obtain the forms and get those in. Also print out a copy so you can take it with you to restaurants that you do not have reservations for. HAVE A BLAST! We can't wait to go back!!! Dining out was as big a deal for my girls as the rides were! It was really special (and one of my daughters has multiple severe food allergies on top of the celiac in our family).


  8. I'll try to get in touch with my sister this week and ask her those questions. I remember her telling me that she swallowed very large "pill" and took liquids they provided (I think) - I do not remember her talking about any other endoscopy....I'll check. They got images from the device that she kept on her (transmitter). I think that her hardest part was swallowing it. Sounded cool.


  9. My sister lives in the Los Angeles area (California) and just had a pill cam. She said that her doctor was in heaven - the camera showed so much celiac damage that she is a great study case for them. It is a great way for them to see in detail what is going on in your intestines. She did have to wear a monitoring device and they suspected celiac before the cam. The results made her realize the damage done and truly go gluten free (phew - I am the little sister and my girls and I are already celiac and gluten free). I hope that your procedure helps you and I do know that they use the pill cams over here.


  10. I read online that some sensitive celiacs react to Rice Dream and I avoided letting my sensitive 8 year old daughter have it as Disney World this last visit. BOY, am I glad that I did! Once we got home, I let her have some vanilla organic Rice Dream ice cream at a function the last day of school. She was ill for weeks (immediately after the bowl of ice cream that I had prepared for her at home and personally served to her - so no cross contamination). Since then, I have purchased Good Karma rice ice cream at Kroger's and Whole Foods. NO REACTION! I am thrilled! Be careful, though - there is soy in the Key Lime flavor because of the graham crust. Maybe this brand will work for you? Before rice was re-introduced into her diet, I made ice cream from Vance's Dari-Free (potato based milk) - not as yummy, but did the trick....

    Good luck to you finding a new favorite!


  11. On Tuesday, May 12, 2009 at 6:30 p.m., Kyle Dine will perform in a FREE allergy awareness concert catering to families of all ages at Calvary Evangelical Lutheran in Clarkston, MI. Kyle Dine, Canadian food allergy singer, has created an entire C.D. with songs about food allergy and intolerance and is celebrating the 12th annual Food Allergy Awareness Week (May 10-16) at Calvary with an informative and interactive music and puppet show.

    My girls loved his music so I told my church and they worked out this concert while Kyle Dine is on tour.

    All are encouraged to attend


  12. Do any of you who are extremely sensitive use special brands for flours / are there brands that you trust more than others? My daughter (almost 8 years old) is so sensitive to gluten that the 10ppm is registering on her bloodwork (or so I assume - we are gluten free and my other daughter's bloodwork came back fine). She does not cheat on her diet and follows all of the rules. She does not want to feel the way that she does. They call her a sensitive celiac. I am cutting back on most things now that I question (like items in shared facilities). Curious about flour and if some brands are better for you guys than others. I was told to watch out for items made in same facilities as wheat. Thanks for any input. Oh - she is limited to rice, tapioca, potato, quinoa and amaranth flours.


  13. WOW! No I have more praises for this company. They phoned me in the States today to clarify that there is not currently a time line for the facility move of their bars. They feared that people would read my comment and be checking regularly at the stores. I thought that was very considerate. Right now, there is not a scheduled move for the Sun Rype bars - it is in the future. My celiac and highly allergic daughter enjoys the products.

    They also emailed me this:

    "Sun-Rype is excited to advise that we recently launched a variety of our

    100% fruit snack products in the U.S. The great taste of Sun-Rype

    comes with no artificial flavours or artificial colours. Fruit snack products

    currently available in the US include: Squiggles Fruit Twists, Fruit Strips,

    FruitSource, FruitSource plus Veggie bars and FruitSource Mini Bites.

    These all natural, 100% fruit snacks are now available in the produce

    section of most Safeway stores across the United States. And, as you

    are aware we have recently launched some of our products through

    select Costco locations.

    The great taste of Sun-Rype contains only naturally occurring sugars and

    comes with no artificial flavors and no artificial colors because we know

    that what's not in our fruit snacks is just as important as what is! For

    more product information visit our website at

    http://www.sunrypeusa.com/

    Only Sun-Rype FruitSource and FruitSource Plus Veggie 1.3oz (37g)

    100% fruit bars are manufactured in a plant that processes peanuts, tree

    nuts, egg, wheat, sesame, soybean and milk products. We recommend

    you try Sun-Rype Squiggles 100% Fruit Twist, Sun-Rype 100% Fruit

    Strips, FruitSource Mini Bites and FruitSource Mini Bites Plus Veggie as

    they do not contain these allergens and would be an alternate snack

    choice for individuals with food sensitivities. "


  14. I just found a bag of juice based fruit snacks by Sun Rype at our Costco. Just wanted to tell you all how thrilled I am with this product. I called Sun Rype and spoke to a lovely lady who let me know how gluten-free their products are. Only their bars are made on shared equipment in a different facility at this time, but they are in the process of moving the bars to completely gluten free environment. She said that their line of products is all over in Canada. While we do not have Safeway stores around me, they are also being carried in Safeway stores in the U.S. at this time. I wrote to Costco asking them to stock more of Sun Rype stuff (the current product is a bag of berry bites snacks). Nice product! Kids were very happy. No corn!


  15. Good question! My daughters - almost 8 and in 2nd grade and 4 and in an early education program for her speech (celiac related) are sensitive. I have started to have them pack cloth placemats that I wash - a clean one every day. They place their food on the pacemats (and their lunchboxes on the placemats). This seems to be doing the trick both for physical and mental health for them. My 8 year old is a lot less worried. My 4 year old has severe physical symptoms when she is glutened - she had them daily last year. This year, I packed and labeled a small plastic box with their own school supplies in them and she has not gotten sick once. When there is food in the classroom, gluten can get on pens and pencils and scissors, etc. I just supply them with their own clean stuff. It has been amazing how much better this year has gone. I also throw a bit of gluten-free soap in their bins so they can safely wash before eating. Their teachers have been notified that they must let the kids wash before putting anything near their mouths. All had gone smoothly. Feel free to contact me if you want more info. Yes, it makes the kids stand out from the other students. My little one is used to it already and my older daughter was diagnose at the end of 1st grade. She had the idea to take her book "Eating Gluten Free With Emily" into school and having the teacher read it to the class. Now the kids totally get it. Her school has even booked Kyle Dine from Canada to do an allergy awareness program in May (he also has a gluten free song). If you get everyone involved, the kids feel fine about themselves. My piece of advice - empower the child, encourage your child to be able to take care of himself by making it as easy as possible for him to function - healthily (is that even a word?) Sorry to ramble....