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KAthyB

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  1. thanks for all the suggestions. i think i needed some encouragement to keep going. We had orientation at school and it just felt stressful and unmanageable to "do school" and eat properly, but you all have made it seem more manageable. I think I just drew a blank after I thought "pack a lunch" - I was thinking what would I pack? If any of you know which lunchmeats we can eat, that would be helpful. I like turkey, and I guess I would just have to find a brand that's gluten free. I havent gotten around to writing the companies...sometimes they are not so nice with their replies.

    THANKS!

    Boar's Head and Deitz and Watson turkey and cheeses are all gluten-free


  2. The Don Pancho Tortillas are pretty good and if you click the link on the gluten free food bullet on the homepage of celiac.com it will link you to the Gluten Free Mall and they carry them and ship them.

    A good lunch idea is lightly toast frozen waffles, let cool then spread with peanut butter and fluff or jelly. Trader Joe's waffles taste like EGGO's and have a much nicer texture then the Van's. The waffles make great breakfast sandwiches....bacon, egg and velveeta are my daughter's favorite.

    Gillian's pizza dough can be rolled into thin circle using parchment paper over and under and layer pepperoni and cheese or your favorite gluten-free lunch meats on one half then fold and close edges forming a semi-circle....brush with olive oil and cut a few slits in the top.....bake at 350 for about 10 minutes until light brown...this packs well for lunch and is good heated or at room temp.

    Kathy B


  3. We ate at PF Changs for the first time this weekend and my daughter had the Cantonese Chow Fun with chicken and the wide noodles. I trusted that if it was on the gluten-free menu that it along with the lettuce wraps were safe. The manager came to out table and told us that the lettuce wraps were gluten-free but not all of the sauces were. He brought out a gluten-free soy sauce and told my daughter she could add in 2 of the other 4 sauces that they had on the table. She did not get sick and had a wonderful dinner. Our service was impeccable.

    Kathy


  4. My 19 yr old celiac daughter was up to 40mg nexium 2x daily and xtra strength pepcid 2x daily and a 3rd nexium if needed after a ph probe on meds showed that the usual dose was not blocking enough of the acid. She decided on her own to take a "drug holiday"....24 hours off meds...she learned that these "holidays" are often helpful in one of her nursing lectures...(never skip insulin)....she resumed the following day starting at one Nexium one hour before her dinner and the reflux is very much improved. She did this on her own....I would not recommend trying this without a doctor's advice...but she feel so much better...she was looking inot surgeries but was told that they are risky....she agrees that reflux is probably worse if she gets some gluten...this usually only occurs when she eats out and is not assertive enough about the cross contamination issues.

    Kathy


  5. When my daughter was first diagnosed in March of 2003 I was constantly on the message boards and saw the warning that Corn Pops which were always gluten-free were changing the ingredients. I went out and bought a box from the last gluten-free batch. Genuardi's/Safeway make a corn nuggets cereal that is very much like the corn pops and is gluten-free. Sorry you found out the hard way. Hope you feel better soon.

    Kathyb


  6. My daughter receives the low gluten host once a week and has been for one year. Her blood work is done every 3 months and since she went gluten-free her anti-bodies are in the normal range. The low gluten host is the only exception she makes and it is either truly a harmless trace of gluten or God is watching over her. This is a personal decision and it is important to her to receive communion. Healing is both physical and spiritual. God bless.

    KathyB


  7. There are sveral doctors at Children's Hospital of Philadelphia. My daughter was dx'd by Dr. Barbara Haber. Dr Petar Mamula is also a good one and has celiac disease himslef and Dr. Ritu Verma has 2 children with celiac and runs a children's support group. Appointments can be made at 215-590-3630

    Good Luck, KathyB


  8. Hi.....

    Breakfast......bacon, egg and cheese sandwich on Trader Joe's gluten-free waffles

    Snack.........Strawberries dipped in gluten-free vanilla yogurt

    Lunch......grilled hot dog with cheese wrapped in a corn tortilla with grapes and apple slices

    Snack.......Mr. Ritts bakery or homemade cookies with an Ensure shake (add a scoop of ice cream)

    Dinner.......Chicken Tenders.....dip in egg and then a 50/50 mix of rice flour and Pamela's baking mix....deep fry( not healthy but good) .....steamed rice and brocolli w melted cheese

    Snack........Vanilla Ice cream with a spoonful of gluten-free peanut butter and choc. sauce

    Kathy


  9. Hi! My daughter is at Gwynedd-Mercy College in Montgomery County, PA. The chef has offered to cook her a gluten-free meal every night and have it on a covered tray waiting for her. He learned all about the diet but sadly, my daughter is stubborn and just reheats the foods I send her. She is only about 45 minutes from home so I stock her up on the weekends. She is going to try to eat these meals at least 3 nights a week this semester. The chef is very helpful but since it is a small college there is no food court as you can find in a larger school. Having her live away but still be close enough when she needs something is working out very well.

    Kathy


  10. i know this is tough....my daughter is 18 and recently dx'd...she absolutely freaks when others don't eat gluten because of her....but she never refuses and invitation to dinner....she says she eats to live not lives to eat....and does not want to miss out on good time because of gluten...she either eats before and orders something safe like a plain salad or just ice cream...or brings her own...i'm sure being celiac can make you feel very isolated but staying home doesn't sound like the solution...good luck..KathyB


  11. I use vanilla pudding in my choc chip recipe and all the kids in my daughters dorm love them..they asked for the recipe....wait till their moms see that it uses gluten-free flour...it truly tastes like a toll house 2 1/4 cup of Bette's featherlight rice flour mix, 1 tsp. baking soda, 1 cup of soft butter, 1/4 cup white sugar, 3/4 cup light brown sugar, 1tsp. vanilla, 1pkg. jello vanilla instant pudding, 2 eggs and a cup of choc. chips......combine butter and sugar, add vanilla and pudding, beat w a mixer till smooth, beat in eggs, add flour and baking soda little by little stir in chips...drop by tsp. full on heavy duty cookie sheet....press down a bit with finger tips and bake 8 -10 min @ 325......no one would ever know the difference...Kathy


  12. Hello all....my celiac daughter was plagued by insomnia the first two weeks away at college and melatonin did the trick...just one (i think 3mg) tablet....from a local drug store and 20 minutes later zzzzzzzzzzzzz! She compares it to the feeling she has going under sedation (too many med. tests). She also suffers severe headaches and lo and behold her neuro suggested melatonin since he just read a report of a study where when taken each night there was a reduction in the number of headaches. Not sure if it is helping the headaches but she is able to fall asleep easily, even in a noisy res hall. It is natural and has no side effects and does not leave you drowsy in the AM like some of the OTC meds.

    KathyB


  13. Hi Deanna, My daughter's reflux is awful after gluten-free 6 mos. with a flaming positive ph probe. She takes 40 mg Neium 2x daily and Pepcid 20 mg 2x daily and weighs in at 103. At this quadruple dose of reflux meds, today the doctor said she could also use tums. No matter what she eats, even ice cream, she has heartburn and buprs like a turck driver. She has not been dx'd with arthritis but has connective tissue disease, ehlers danlos, and the rheumatologist put her on Vioxx for joint pain. She cannot have any ibuprofin because of the reflux and the Vioxx is much easier on the digestive system. You need to cut out these meds as they will eat up your esophagus. I know you are trying to cut back on caffeine but be careful of carbonated drinks. We were told the healing will take up to 2 years so habg in there.

    Kathy


  14. Hi Missy, You are a carbon copy of my 18 yr.old celiac daughter. GI celiac symptoms are slightly improved by the diet but reflux, joint and muscle pain and vision are a problem. Vision problems began with a bout of conjunctivitis and she is awaiting her glasses so she can drive at night. She had 20/20 prior to the infection. She saw a Rheumatologist this week, Lupus and Rheum factor were negative but she has Ehler's Danlos Syndorme type 3 (hypermobile joints) and the doc recommended Vioxx to relieve the joint and muscle pain since she can't tolerate ibuprofin because of the reflux. I think the celiac disease is the culprit and the most notable side effect of the gluten-free diet has been reduced leg pain. I thought the vision problems were related to the celiac disease and your case strengthens my theory. Jsut wanted you to know that you are not alone.

    Kathy B


  15. I called Wendy's last week about their fries and was told that they are definitely gluten free but are not listed on their gluten-free list since some Wendy's do not use a dedicated fryer. My daughter ate them last week after checking that they used a dedicated fryer but still did not feel well afterward. I'm not sure if fried food upset her reflux or if it was because of the gluten.

    Kathy


  16. Hi Amy, Hang in there! I know you are overwhelmed right now but when you and the baby can handle it go for further testing. As a mom of a recently diagnosed 18 year old who was starving to death before dx'd I think the only way to justify the demands of a gluten-free life is testing. Babies don't even know they are biopsied and I know you don't want him to go through the gluten challenge but it is worth it. My daughter is getting ready to go off to college and in order to get special food accomodations the school requires a copy of the tests confirming the dx in order to use the funds available through the ADA. I know it seems a long way off but this may come up when he starts Kindergarten. I think JELLO jigglers might be a soothing finger food for a teething tot although it has been awhile since I had a baby around. I make them for my daughter and her friends frequently and they go over well.

    Good luck, God bless and stay strong with the doctors!

    Kathy


  17. Hi Heather, I'm mom to an 18 yr old daughter dx'd in Feb 04. We are from the Philly area and she will be attending Gwynedd-Mercy college in Bluebell. They have made her go through the ADA channels and are making some special exceptions for her diet. Just want to make sure that you know your school should be able to help you out by ordering gluten-free foods or by giving you cooking access if you are on campus. She still has bad days and is presently on senior week in OC/NJ starving:( Check out the Dietary Shoppe in East Falls. It is the best around for gluten-free foods. My daughter doesn't like the message boards and such. Her GI said it could take two years to heal completely and she has had setbacks with acid reflux. Keep with it, good luck, you are not alone.

    Kathy


  18. If you do without long enough you may be more tolerant of the new taste and texture of the gluten-free products. I did this with my daughter who refused all the gluten-free substitutes and stuck to meat, fruit, veges and dairy and after 3 months she is coming around and trying breads and other baked goods. I get what you mean about the "health food" thing and it is frustrating.

    Kathy


  19. I definitely see a link between moodiness and anxiety in my celiac teen and potassium. She has had trouble maintaining electroltyes for years and just recently was diagnosed celiac. Along with moodiness she gets terrible leg pains. I am not sure if she has trouble absorbing the potassium because of the celiac disease but if I sneak her some exta OJ, cantalope or ohthe potassium rich foods her mood improves.

    Can't hurt! Good luck!

    Kathy