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About Kat'sMommy

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  1. Hello there, I really relate! My daugter is now 7. She has been gluten free for about 15 months and WOW what a difference. During the first few months (seriously months) there were days that I thought I would never figure this thing out! Let me tell you just a few encouraging things. First, my daughter loves her "diet". It took awhile but we have substitutes and safe options for nearly everything. No more stomach aches or asthma. So much energy, seriously this child could go and go and go. When she was gluten free her focus became so much better that within 6 weeks she could read. We homeschool and she could tell you everysound that every letter made, but stringing them together came and went. It was a focus issue it seems. One year later she reads 2 years above grade level. Over the course of the year the families we meet together with for a one day a week co-op have learned so much and are so willing to help. Several are even taking this road now to see if it will help with ADD so they can avoid the meds. No more body pain (which we did not even know she was having until it went away.) Also, she has grown over 6 inches in the last year. We never realized she was short because she was at the 50%, ofcourse Daddy is 6 foot 5. So, 50% was short for her. She is tall and thinner (she was very inflamed - infact she lost a shirt size in the first 6 weeks!) She has been glutened, one time she ate an entire piece of cake that we thought was gluten free. That was a horrible experience. An adult Celiac that I became aquainted with told me. Things will happen don't beat yourself up you are doing everything you can to make her healthy and happy. He said he glutens himself. There are days when I wish I could call Pizza hut instead of making a pizza from scratch, though I must say with experimentation they are becoming pretty good. I get tired of taking everything with us to birthday parties and such. I have cried. But, it is so worth it. I also rejoice! Yesterday I pulled in the driveway to see my 7 year old moving branches with her father from a newly trimmed tree. She was grinning and dripping in sweat! We live in Florida. She went on to climb trees and play outside for several hours. She looked and sounded so healthy. We came in the door to pork roast from the crock pot, rice and veggie - pretty normal. Life can be better gluten free than you would ever imagine. And when I start to I would really like a donut, I go to the health food store and buy a pack of gluten-free donuts. We can do it day by day, but we don't learn anything overnight. Give yourself grace and forgiveness and know that over the days and weeks it becomes easier. This forum is invaluable. I don't write often, but I search and read. Knowing I am not alone is wonderful. I have gone on long enough. I hope this helps. PS. Gluten every couple of months would not be a good idea - sorry.
  2. Had to chime in here, this facinates me! I am half German (actually Prussian) by decent, but that part is evened out with European Mix! Especially Scotch Irish and English Peerage/court (going back to 1500's). With a good does of Cheerokee. I look German! My husband is primarily Scotish (but near as I can tell, probably english blood) and Cheerokee and looks more Native American. My girls, including the one offically diagnosed, definitely look more Native American. They don't look blue when it gets cold! Pigment is a good thing. Looking back through the last generation, my family shows signs of gluten intolerance and various auto immune diseases, but so does his. Until genetic testing is more affordable we may never know, but someday maybe I will track it all. Someday after Homeschooling and gluten-free cooking, and all the day to day of raising Celiac Kids is past. For now I will just enjoy learning from all of you! Blessings, Christine
  3. Hello there, I can't offer much advice, but I can say I understand. I, too go through days of beating myself up that I didn't push for a diagnosis. It is very easy to look backward and beat yourself up. You are not alone. I down played stomach aches and itchy skin. I even think that I led the doctors astray by saying what I thought was the issue, when I was dead wrong! One example: My daughter threw up nightly when she was smaller. Well, She had allergy problems, and the allergist and I agreed that her little tummy couldn't handle the post nasal drippage. That might have been true, but there is very little post nasal now that we are 10 months gluten free. Did my commenting on her allergies mean we didn't see that something bigger was going on. How did I miss that the painful tummy aches, the throwing up, the ...... You get the picture. All I can say is this: We are both doing the right thing now! That is all we can do. Keep fighting for your child and trust that you are on a path to better health for him. You will do a wonderful job for him. (Even when we make mistakes) Best Wishes, Christine
  4. Thanks everyone for the answers. We are pretty gluten free as a house hold, but I will redouble efforts on cc. I think we are doing pretty good. I am known for being a little OCD on cleanliness in the kitchen even before the Celiac. For now we will keep plugging away and see what happens come June 2008. Thank you so much! Christine
  5. Hello everyone, I don't write often, but you have been a wonderful source of information over the last 6 months. Thanks My dd had her 6 month follow up with the ped. GI and our blood test results weren't back on time. She had been having occasional stomach aches, but we are all convinced that it is lactose issues. So, two weeks later I get a call from a very polite nurse who tells me that the ttg is at 22. He says, check the diet because she is getting gluten somewhere. That was the end of the discussion. I did not think to ask anything else, and nothing else was offered. I have checked everything. Even the toothpaste and shampoo. I can't find anything. So, I guess my question is could this be just a cc issue? one accidental glutening? Could it be my pots and pans (they are not coated in teflon) Is she just not healed yet? I guess I should mention that in 6 months her number did drop 80% from 108. Any help would be wonderful! Thanks! Christine
  6. Hey there again, I hope today is an easy step on this path. As for changes in your daughter, I am not an expert. I say look for the little things. It took a while for everything to baseline. But, for us inflamation was a big issue. In about three weeks clothes that weren't fitting before were baggy. She was calmer within days. She wasn't crying in the bathroom with in about 2 weeks maybe less. It takes time for them to heal, but every little milestone is wonderful. I had another thought about Disney, since you are wanting to save money. Disney has a policy that individuals with specific health needs can have a cooler on property. They will even let you know what size fits into the lockers (A small fee). Since Publix Grocery Stores and Winn Dixie carry pre-packaged gluten free lunch meat (I don't remember the name brand at Publix but it is available in our Greenwise section and Hormel all natural at WD) why not pack lunch and then plan on eating a fast food or cheaper restaurant at the park where gluten-free is soooo easy to find. Just check with Disney on the cooler regulations. I believe the statement they forwarded me was on the gluten-free list for the restuarant. It would be justs at easy to stop at a store on the way into the park as to leave early enough to have a dinner off the park. OR look for a "five day" cooler to keep in your room filled with the supplies you need. The hotel might even be able to help you in some way. The lunch meat, cheese squares (If milk or lactose is not a problem), lays potato chips, betty crocker gummies, carrot sticks, gluten-free cookies, or what ever you are use to would make a great lunch. I carry a "purse style" cooler everytime I go to disney filled with our "snacks". I never get questioned, but if I ever do I will just let them know of our special needs. I also make a gluten-free trail mix of m&m's, peanuts, and dried fruit, a good balance for sugar issues. As for restuarants in DownTown Disney. I would have to look it up, and I will. It has been a while and I don't want to misquote. However, they aren't any cheaper than the park restuarants. I will let you know what I have if it is current. Or just check a list of the restaurants at DTDisney, and start e-mailing them regarding possible gluten-free menues. I hope this helps, you will have a great trip and you will be so thankful that your coming to a place like disney that makes the gluten-free person feel like a star instead of the exception. Right now it just seems like so much because it is all so new. Have a great day! Christine
  7. Before talking about travel to disney I want to encourage you. You sound like your doing better than I was at 10 days. I am only a few months in front of you on this, and I have made some mistakes, but it is getting easier and better. The difference in my dd is so amazing that everytime I think I can't do one more field trip, or meal, or dinner with guest, I look at her. I am even starting to replace some of my baking business with gluten-free! Ok, lets see, Disney... First, it is not just the sit down places that have gluten-free. The Turkey legs are gluten-free, and a big hit at all the parks. Pacos Bill has a gluten-free burger - with a gluten-free bun. I would guess that each of you could eat there for under $8 each. We always take water with us. Any restaurant will give you ice water when ever you need it, so just keep refilling the bottle to save on soda cost. ($3). One of the locations even has Amy's gluten-free pizza. When you talk to the person at Disney they can give you a list of each place. If they don't, do what I did and send an e-mail request. It will let you know that the classic Mickey Ice Cream is gluten-free, and when your 6 that is a big deal! As for the sit down restaurants. The dress is exactly what you would wear to the park. Some people of course will be dressed up, but that is so not necessary. The nice thing about the sit down restaurants is you don't have to seek someone out and tell them what you need. You tell the waiter and usually the chef comes to you table and walks you through it. I must admit, we always do the cheap version. We have not gone to any of the sit down restaurants since going gluten-free. In fact, most of our disney experience is out of the parks, at downtown disney and such. As for cost. Every restaurant has a kids menu, so they are less expensive. There are also different catagories of restaurants so the prices vary. The mexican fast food is good at epcot and much cheaper than the sit down. Same with China. I am sure that each of them has something gluten-free so you are not relegated to the expensive ones. The pizza place and the cafe are cheaper at MGM (just check that gluten free list.) Some of the places will cost less than outback, a staple apparently for gluten-free travel. Well, I think I have been rattling. (long day) so if you think of another question let me know. Christine
  8. They can help you at 407-WDW-DINE. Have a wonderful time. We will be in the park on 12/1. It is a wonderful time to be at Disney.
  9. Hello There! Disney is wonderful, call their hotline and talk to a rep. They sent me a list of what I could buy my DD at each stand in the parks. Of course the restaurants themselves are amazing, but you have to make the time for a sit down meal. I have been told they have allergen free zones in all their restaurants for making our meals and the like. They are fully trained and are even very aware of CC. Even at the Italian places there are great meals. I would check with Universal and Sea World as well. I haven't been to them. A relative works at Sea World doing the beer education, and they include a gluten free sorghum beer, so my guess would be the park is aware of the need. As for off the park, we still struggle with finding good restaurants. (We are only 5 months glutten free). However, we have every major chain so those that are gluten friendly, like PF Chang's, Out Back, and Carrabba's are available. I have been told there is a deli downtown with a vegan, gluten-free, CF menu. I will look into the name and post again, but it would be out of your way if you are staying in the Park areas. I would suggest contacting the Rainforest Cafe, It is a great experience for the kids. I have been told they are gluten-free aware, but I would call and talk to a rep there as well. Since they have 2 on disney property, a good response is likey. As far as Fast Food. Chik-fil-a is wonderful. You can check out there list on their website. Just double check that they have a dedicated frier for the fries. I have not run into one yet that doesn't, but you never know. They will make a kid's meal for me with their grilled chicken for my DD, so she is getting what she was used to with the toy and everything, but no syptoms. I love this chain. Don't know if you have them near by. If you don't be aware they are closed on Sundays. I hope you have a wonderful time. I know that travel is difficult, but Disney is the place to go if you have to do gluten-free. They are Fantastic. Have fun and Enjoy. If I learn anything I will post again. We are all learning and in this together.
  10. If anyone should ever need this information again. We had a wonderful experience at Rosie's Mexican Restaurant in Huntsville. The owner Todd was there and he has family experience with "wheat". He checked the ingredience in what we wanted, personnally came to the table to take the request to the kitchen, made sure the chef kept my daughters meal from others, and served it himself. Then he checked back with us later. We had a great meal, great experience. Highly recommended! Thanks again for the help!
  11. Thanks so much! The Cafe sounds like it might be just the thing our hosts would enjoy; something more unique to the area! I love the idea! What a Blessing! Thanks!
  12. This is my first post anywhere I was hoping someone could help. We have to travel this coming week to Huntsville, Al. Is there anywhere we can dine? I know our hosts want us to try local "Flavor" and that scares me. A nice Darden Restaurant I can work with. Any suggestions? Thanks So Much, you will make my 6 year old very happy!