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About RIMom

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  1. do a google search, but I'm pretty sure there is one in California. Unfortunately, he may fall through the cracks for camp. In RI, campers have to be 16 or younger and counselors have to be 24 or older. I would encourage you to help him find a local support group and a few restaurants that have gluten-free menus. good luck.
  2. Yes, it's great. I was a counselor last year and both my girls went too (ages 7 and 10 last year). I'm happy to answer any questions you have. The kids have a blast, the food is great... only complaint in my house, was not enough sleep, but it's only a week. You don't say how old you are, but if you respond back with more questions, I can be more specific. Hope to see you there! Keep track of the website b/c as soon as the applications are posted it will fill up (especially if you are a teen). Hope to see you there! Sarah Has anyone been to camp celiac in RI? I'm thinking about going there and I'd like some info on it other than it's website. Thanks !
  3. I would like to add to the great list for eating gluten-free in RI. Providence: Kabob and Curry Restaurant, Waterplace Restaurant (a Pinelli Mara restaurant... all their restaurants have gluten-free menus, even though they are not on line), Pizzaria Unos, Red Stripe in Wayland Square (has gluten-free french fries and Redbridge Beer, all their food is fab and even a manager is gluten-free herself), Apsara Thai Food on Hope Street. Pawtucket: Rasoi Indian Restaurant (same owner as Kabob and Curry, but much better atmosphere). Great menu with all items marked as to gluten free, vegan, spicy, etc. Newport: Tucker's Bistro.... loved this place as a really nice night out. gluten-free bread on the table, every item on the regular menu is available gluten-free (except a few desserts). We ate four courses and loved them all. Narragansett: Blue Wave Pizza Call ahead b/c gluten-free crust takes one hour. Owner makes each one to order from scratch. yummy!!!
  4. Hi everyone, just wanted to share our amazing success in eating out in Seattle on our recent vacation. We were traveling with two kids and my DH all of whom are gluten-free. We ate successfully at: Blackbird Bakery (yummy gluten-free berry muffins, chocochip cookies, and even fresh bread and rolls) and Casa Rojas (chips are freshly made and gluten-free) in Bainbridge.... Town and Country Market was great too, as is Central Market in Poulsbo. Mora Ice Cream, right behind the bakery even has gluten-free cones (albeit for $4.50 for a single scoop) There is a great mexican restaurant on the steps from the waterfront to Pike Place Market maybe called El Puerco Lloron (chips here are not ok, but most everything else is... yummy freshly made corn tortillas were really a hit with my kids) Cinnamon Bakery in Pike Place had gluten-free items my kids loved, but yikes, they were soooo expensive! $13 for three cookies... Dinner at PF Changs in Westlake Center was great as usual. They made great substitutions for my kids to have gluten-free kids meals (there are no kid meals on the gluten-free menu). They happily ate chicken fried rice and pad thai noodles with chicken. Garlic Jim's pizza was fantastic. I can't speak for the other locations, but West Seattle was fabulous. We had their pizza three times during the 2.5 weeks there. The kids would have eaten there every day if we had let them. Anacortes.... go to Adrift Restaurant. They have a gluten-free menu and made great accommodations for the kids there too. The french fries are baked and therefore gluten-free and yummy too... a huge hit for the girls. My husband had the curried salmon with mashed sweet potatoes and said it was one of the best meals he has had anywhere. AMAZING!!! Island's Inn in Anacortes provided us with gluten-free granola and let us bring our own waffles for their breakfast. Carol was so sweet to us there. The Market at Anacortes had a great gluten-free section too, and was the first place we spotted the new Betty Crocker cake mixes. The co-op in Mt Vernon had great gluten-free supplies and even the Hagen's market there had pancake mix and more when we decided we wanted to bake while we were there. Thanks Seattle for a great trip with full and happy bellies........ it was great!
  5. You sound like you are in great hands. Unless your son puts everything in his mouth I wouldn't worry too much. I arranged with school to keep a "goodie" bag of gluten-free treats in the cupboard so that if other children brought snacks to share (ie a birthday), she could have a pick out of her snack bag. We filled it with her choice of prepackaged items so that they would last. I used gluten-free granola bars, fruit snacks, Ian's cookie buttons and even some candy (although I'm usually against sugary snacks). I wanted her not to feel left out, and it worked really well. We have done it for 4 years now successfully. The key is substitution. I also keep granola bars and cookies in my car for such unexpected occasions. I call ahead for birthday parties and ask what is being served. I then send a comparable snack/treat for my child. I usually use glutino pizza crusts to make an individual pizza for her and keep cupcakes in the freezer (only have to take one out and frost it with a blob of frosting and a few sprinkles). The only problem we have had is sometimes kids want a cupcake like hers rather than what is being served. I keep a list of off limits ingredients attached to her lunch box and in her backpack, that way if she is at a playdate she has access to the list to share with well intended adults who want her to eat something. My note says: ____________ is gluten free. This means she cannot have wheat, oats, barley, rye, soy sauce or malt in any form. If you have any questions, please call me at ____________. I also encourage parents to offer her fruit or cheese if they feel like they need to provide something for her. It seems to work well. Good luck. It's a great time to be gluten-free... Betty Crocker even makes Cake mix now..... it will change his life for the better. Enjoy!
  6. New cereal spotted at Whole Foods last week. Called Penguin Puffs. It lists Kamut as primary ingredient, does not list Contains:wheat. I went searching on the naturespath.com website for more info. They are claiming that Kamut is gluten free. I sent them an email seeking clarification, but am confused. Also worried that one of the many label readers I have recruited to provide childcare for my daughter might feed this or something like it to my daughter. Advice? What do you know about whether Kamut, specifically Nature's Path/Envirokids Kamut is gluten-free? It seems so weird b/c they market themselves as specifically gluten-free on so many of their products, I would think they know what they are talking about...... Help???
  7. Bed Wetting

    interesting, she eats very little soy and never has accidents during the day. She is wet every night and always has been. (2 dry nights in her life, not in same week).
  8. Bed Wetting

    sometimes it's just bedwetting though. My 5 yr old daughter has been gluten free/symptom free for 9 months now and still wets the bed. We wake her between 10 and 11 when we go to bed and have her pee, it doesn't matter, she still wakes up wet. she is a deep sleeper. We are working on it, but she just may not be ready.
  9. Bed Wetting

    we are going to do the enterolab genetic test on our negative blood test daughter for that exact reason. We just want to know. We are going to do it privately (I know it's expensive), so it won't go on her insurance record, or medical record. They give discounts for family members. That way we will know if her weird things are just weird things, or if it's actually possibly the celiac raising its head finally. Good luck
  10. I Need Sushi!

    Our local supermarket uses a Tsunami brand in store sushi maker guy. My daughter and husband successfully eat veggie combos (has seaweed wrapper, rice and veggies inside, they have single veggies or mixed ones). They can also usually eat the shrimp california roll (as long as it's not tempura or fried). The nice thing about getting it in the supermarket is it's all labeled with all ingredients. Whole foods sushi is pretty good that way too. They even use brown rice there and will make it to order. Just make sure to bring it home and use it with your own gluten free soy sauce and enjoy. Also, I just noticed at our local Thai place, restaurants can now get gluten free soy sauce packets from www.kariout.com. We were thrilled not to have to travel with our own soy sauce anymore. Enjoy.
  11. I thought McDonald's french fries are not ok now..... Maybe the list is out of date. Can someone clarify
  12. Does anyone have a list of ok candy? I don't usually let my kids eat much candy, so I'm totally unprepared to deal with bags of unmarked candy coming in the door for Halloween. I know ingredients are on external packaging, but you don't get that. I really don't want to spend hours doing research or tell her she can only have M and M's. Anyone have an active list? Thanks Sarah
  13. I challenged our doctors' insistence my daughter have a endoscopy. I said we had a positive response to a gluten-free diet and I didn't want to put her through it. He said the official line is he has to tell us to, but that "the most definitive diagnosis was a positive response to a gluten-free diet". He said if her symptoms come back or there are other concerns he may insist later, but for now he seemed content with our decision. If you really want to know, do the Enterolab test instead, it's non-invasive and will tell you more about your absorbtion and malabsorbtion concerns.
  14. I apologize for my earlier response, it was before I read about your other sensitivities. But, yes I agree, try the diet, and call the drug companies to ensure the drugs are gluten free if you insist on trying them. For many kids, gluten is an addiction and makes all so much worse for them. Make a huge deal about anything he tries, my friend calls it "no thank you bites" Her kids have to try it, but can say no thank you if they do, and don't like it. Make a deal with him that you are going to try this together. Don't eat forbidden foods in front of him. Chart what he eats on a list and when he tries 10 new things he gets a prize..... or an extra book etc. You get the idea. Keep a log for yourself of what he eats and what his symptoms are and what the outcome is on a daily basis for two weeks (I read somewhere that's what it takes to detox in the first stage). Then evaluate with your partner and challenge the doc with the results. I agree on the smoothie thing. They make great popsicles. You can also mix flax seed meal into other things he likes or use flax seed oil on the bread instead of butter (don't heat it too hot, put it on after toasting). Glutino makes cheerio type cereals my kids like and they are sweet (not sure if dairy free). Also Whole Foods just came out with whole new line of gluten-free mixes.... I just bought two. they seem to mimic the GFPantry line and are cheaper. Yay Whole Foods. Offer, don't pressure new foods, he will try if he sees others trying things. Good luck
  15. It's all about substitution. my daughter was 4.5 when diagnosed. We went cold turkey. For the most part the whole house. I kept a few of my other daughter's favorite things, if and only if I had a comparable substitute for her. I use Tinkyada pasta, Whole Foods brand Sandwich bread, Lara and envirokids bars. Lots of rice, fruit, veggies and dip (she loves Annie's cow girl ranch). I got rid of all wheat flour (didn't want it flying around, and didn't see why we would bake something that wasn't for her too). I like gluten free pantry pizza and french bread flour, I use it as an almost direct substitute for flour in baking. She eats yogurt, cheese, gluten-free granola (we like Enjoy Life Cinnamon), eggs, peanut butter and bananas. The biggest issue is enlisting cooperation and your attitude. Yes, I said mom's attitude. I co-miserate with her when we can't find something she wants, but I offer substitutes and I notice anything that makes a difference. At first it was a week with no sore tummy.... then it was her skin got brighter, now 6 months later it's her nails and toe nails are growing and are strong (they had always been like baby nails). Her hair is getting longer. I give her a lot of say about what she has within limits. I offer choices and take her shopping with me. We have discovered mexican food. She is thrilled when something is "safe for me" and will try most things that are now (didn't used to b/c was at war with her tummy). It takes a lot of planning ahead. I keep special snacks at school so if someone shows up with bagels or cupcakes, she can pick one out of a bag.... Lara bars, apple chips, even a few pre-packaged cookies, so she doesn't feel left out). I call ahead for birthday parties and ask what they are serving and send an equivalent (ie pizza and cake.... we make english muffin pizzas in the toaster over, and she can pick a treat, I keep cupcakes in the freezer, or she can frost a cookie or just have icecream if it will be offered). The biggest difference for us was recruiting her that this might make her feel better. I can't tell you the last time she complained of a sore tummy.... makes it all worth while. Stick with it, it's worth it. If you really do it throughly, you will know within a few weeks if it's going to make the difference. Best of luck.
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