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gfgypsyqueen last won the day on August 6 2019

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About gfgypsyqueen

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  1. I love PF Chang's. But things can go wrong in any restaurant. Next time you go to a restaurant ask to speak to a manager before you order. Have them expalin what they do and answer all of your questions to make you feel more comfortable about eating there.

    Also, double check the rest of the products you use and eat. At a graduation it is possible that guests in the house did something wrong that got you sick.

    Hope you feel better.

  2. I am all for the scope. Your child may be more than a bit nervous about the scope see if she can talk t other kids who have had a scope done. It is quick and painless. The scope can be used to rule out other problems your child may be having. Most importantly the biospy is not something that the school or your child can deny. This disease can be depressing at times and I can see arguing with my parents as a teenager about whether or not I actually had the disease if they did not have the biopsy proof. (I was diagnosed as an adult.) Even with a biopsy disgnosis, I have had my family question the need to be 100% gluten-free all of the time.

  3. Wow you went through a lot during those pregnancies. It sounds like you and the kids are doing well. You are gluten-free now. Do you know if the kids are celiacs too? One of mine is. I know the decision to not have more kids is such a hard choice especially when your kids are young. Combining that decision with the life changing "no more gluten" lifestyle change is really hard on anyone's emotions. Adjusting to the gluten-free life can be really hard at first. Hopefully you'll start feeling better about everything soon. If not, be sure to talk to your husband and Drs about some options and alternatives.

  4. My daughter was up all night complaining of being hungry before she was diagnosed. She was fed all night too because she was so sick. So it was a bad cycle. After a few weeks of being gluten-free/CF she slept well and we only have problems when she gets gluten-free or dairy. Her behavior and wetting the bed are the first indicators that something has gone wrong.

    I think after just a week or so the baby is still healing. Stomach cramps would probably be right. Just figure the baby has been used to diarrhea constantly and now all of a sudden the bowels are working right. I know mine had her first formed poop after a week or two on the diet. She was so happy.

    BTW: if family and church aren't "getting it" about gluten-free food, think about a medic alert bracelet. That made a HUGE difference for us.

  5. Agreed it is very hard and personal choice to do a biopsy on a young baby. The previous poster has excellent questions that I wish I had thought of at our appt. From my personal experience, load up on the gluten adn go for the biopsy and gene test. My daughter practically stopped growing at 9 mths. At her 2 yr check up she was falling off the growth charts and no dr was concerned. I had to fight for the testing and biospy. The biopsy was inconclusive. The gene test was positive. The Dr yelled at me for putting her on gluten-free/CF diet - but she has grown so much and changed so much and she reacts to gluten every time. I have no doubt she is a celiac; however, all of the Drs question the Celiac diagnosis before they look for any other possible problem she is having. So I really wish I could say "Yes, she is biopsy positive just like me, now lets address the current issues."

    If it helps, the biopsy is painless and pretty quick. Due to the age, your childs biopsy should be done in a hospital.

    Best of luck!

  6. I agree that in the beginning the restricted diet really sucks. If you don't feel comfortable going this year, then don't go but plan a great trip for you that weekend. :rolleyes: No staying home bored and upset about what you are missing. Your boss may get the idea of eating on a restricted diet, but they don't understand it fully. Since food and drinks are such a big part of our society and business, find a way to be comfortable requesting business functions at certain places so you can eat too. Getting used to packing your food and calling caterers is not my first choice either, but I do it becasue my kids have allergies and celiacs too. I refuse to stay home because of this disease and I try hard to show them that this disease and allergies cannot limit their life - only they can. So when things settle down a little and you get more comfortable with the diet, plan to go to everything whether or not food is involved. You'll kick yourself for missing a good party and it will be better for your career. Buy translation cards for the mexican restaurants. Higher end restaurants can usually handle the gluten-free diet. I recently found an expensive Mexican place near me and had chicken enchaladas which was a great treat for me. If needed, call or stop in to the restaurant before hand and figure out food options with a manager.

    I agree with one of the other posters that you should at least go to the hotel and then go for a spa day or soemthing when everyone else goes to the game. If you decide to go to the game this year or next, buy a discreet tote bag cooler. Some look more like a handbag than a cooler. Pack it full of shrimp cocktail or some other really great snacks for you. You may not be able to enjoy the hotdogs on the buns, but you can pack some really great treats for you. Bring a sports bottle full of margarita's. The park might object to a flask of alcohol, but a sports bottle that looks like lemonade...noone will care (bring a Dr's note if needed).

    Hope things go easier for you soon.

  7. Whether or not to get a biopsy seems to be a personal choice here. I personally believe it has helped me to have a positive diagnosis. One benefit is that they rule out other diseases. It also causes me problems (with Drs and with schools) for my one child who does not have an "official" Celiac diagnosis through biopsy. She reacts to gluten and is so much better gluten-free!

    Since you are sort of gluten-free now, it may be harder to go back on the gluten for months just for a biopsy. Look into Entero Labs as another option.

    If you believe you have Celiacs or gluten sensitivity where you would need to adhere to the gluten-free/CF diet, please do some research and get the knowledge you need to keep yourself healthy. You can still damage your intestines and increase your risks of serious problems later on by continuing to expose yourself to gluten whether or not you have reactions.

    FYI: I like eating breakfast out. If you get dragged to Deny's again, order fried eggs or have them crack eggs for your omlet. (I stick to Denver or Western Omlets.) The egg mix that is purchased by restaurants can be risky, so ask for the freshly scrambled eggs. The hash browns are fine. Make sure to tell them no bread on the plate. No grits, bread, biscuits, or toast. That is usually a safe meal and filling too :D

  8. I can't give you an exact amount, but I have been in many emergency rooms as a child with abdominal pain. As a young adult I had years of health problems and lables of bulemia and IBS (neither were correct). Throw in a couple of surgeries "to look around". Then I finally started getting really sick. My undiagnosed illness affected my new baby too. She's ok in the end. I finally lost a gallbladder and an appendix and got a diagnosis of Celiacs. Now I am much healthier. In total I would guess around $7K to $10K for my costs on surgeries, medications, lab work, etc. How much it ran without insurance I don't know.

    For my toddler, the meds, lab work, and testing has run around 3K and she still does not have an "official" diagnosis. She responded really well to the diet after an inconclusive biopsy for Celiacs.

    Hope the school project turns out well. Post the results :)

  9. Not to stir the pot too much here...but doesn't anyone see the need to force the car manufacturers to make the cars we NEED and WANT? The technology is there. I want a car that can fit my family & pets, fit my needs (light tow), but get a minimum of 35-45 mpg. Really I want better mileage than that! Why is it even an option to buy one of the many cars on the market that barely get 25 mpg? Let alone the trucks and SUVs that don't get 15mpg! I'm pretty sure my parents cars got 12 mpg back in the 70's. Maybe someone who was driving then knows better.

    The gas companies have us cornered, we need gas for these cars, trucks, buses, planes, etc. to get around. The gas companies will get their profits. From what I've heard the gas stations don't make much on a gallon of gas. They make their money on the drinks and snacks we buy in the store. Why can't we as consumers demand better quality cars that get great gas mileage or use alternative fuels at a good price?

  10. I've traveled quite a bit in the US since being diagnosed a Celiac. My kids have additionaly food allergies too. (One is anaphylactic.) We still travel and do fine with a litte prep. Here are some of the things I do before we travel.

    Fly with a small discreet cooler with basic lunch for your child. (bring a letter from Dr stating she has Celiacs and requires a medically necessary gluten-free diet...sometimes that is needed at the security gates.) That letter may help you with hotels too.

    Hotel with "free breakfast" are pretty much useless. I have only stayed at a kitchenette place a few times. Most larger hotels will provide a small fridge and microwave at no cost, if medically necessary. (bring the letter for that)

    But, eating breakfast out is pretty much my easiest meal to eat out. (omlet with home fries) bring muffins or bread if needed.

    Google the area that you are going to visit and find healthfood stores nearby. In Southwest Florida we have Richards, Ada's, and Whole Foods. The Whole Foods by me doesn't have a great gluten-free supply, in my opinion. Call or e-mail the store well before your trip and see what they carry for gluten-free cookies, crackers, and other portable gluten-free snacks that your child likes.

    Safe restaurants that have gluten-free menus include: Outback, PF Chang's, Caraba's, Wendys, I can't think of the rest right now... you can check with Gluten Intolerance Group for a list of restaurants that they have worked with to create a gluten-free menu.

    At other restaurants I generally eat a burger no bun and fries if from a dedicated frier for lunch. For dinner steaks, shrimp, snow crab legs with baked potato and steamed veggies (plain) are usually fine.

    As for fun places, Disney is obviously great. Sarasota is on the west coast of Florida and has amazing beaches and the Mote Aquarium. That would be a great "calm" place for a few days.

    Busch Gardens (Tamp, FL) is tons of fun and lots of roller coasters and water rides, but not as great as Disney for the gluten-free safe foods. Busch Gardens is my kids favorite park right now. I would pack all of her meals if you don't plan on eating at the nice sit down restaurants. You can get chips, fruit cups, drinks easy enough. I think Seaworld is part of the same larger company.

    The blue ridge mountains in the Southeast has amazing moutains camping, rivers, white water rafting, etc. Not sure about the gluten-free supplies but it is a huge area, so Google the area and see if you can find something that works for you.

    The northeast (Maine, New Hampshire, and Vermont) has more great mountains, camping, hiking, skiing, leaf changing season (Late Sept and October), and fishing villages, etc.

    At regular grocery stores Boars Head deli meats are gluten-free. So you can bring lunch meat salads, lettuce wraps, or sandwiches pretty easily.

    Hope you have a great trip!

  11. Hi and welcome to the neighborhood :P

    I've been sick with "stomach problems" on and off all of my life. I was finally diagnosed as a Celiac 5 yrs ago. The first few months can be really overwhelming. But it gets so much easier! I feel better now than I ever have. I don't get sick as much as I used to either so that is nice.

    I have two small kids. One has a serious nut allergy and the other has Celiacs, milk allergy, shellfish allergy, and possibly more. It sounds hard, but the kids learned very fast not to share food, not to accept food from any other parent or adult, and to read labels. My then two year would "read labels" at the store to try and help out. It always cracks me up! Plus both of them proudly announce to anyone who has what allergy in our family. You have to laugh when they do it.

    BTW, we still eat out. When it was just Celiacs and the nut allergy, we ate out all the time. (Look for restaurants with gluten-free menus to start out.) But now the youngest is still reacting to something, so we don't eat out much. That of course saves some money to make up for the money spent on the more expensive foods ;) Plain foods like burgers no bun are usually safe.

    Post some more questions if you need help getting started. (Clan Thompson food lists really helped when I started out.)

  12. Regardless of if you can get past the screening, I would be very concerned about the foods for deployment. On base you can always work somethign out, but in the field you have to rely on what food arrives. Technically they can handle a vegitarian, but I have heard of several who for whatever reason do not get their vegetarian MRE and have to go around in the field trying to trade the non-vegetarian parts of their MRE with others. Just logistically, I can't see how they could accomodate your gluten-free foods.

    However, if you are looking for a reserve service type of job, try looking outside of the military. Sheriff Department, Fire department, EMS, Power Squardron, Red Cross disaster teams...I think all of them have different types of auxillary jobs that might give you the fullfillment you were looking for in the military without the food problems and DH infection risks.

  13. If you were a former state champ in running you must be very driven and goal oriented. This disease sucks at times. No one will disagree with that. But, this disease is a blessign in a way - no meds and no side effects to manage the disease. I had many meds with side effects that made it impossible to run or ride a bike let alone think through a problem.

    Keep a log of what you ate and how you feel - it made a huge difference for me. Track your glutenings and what effects it has on you and how long until the reaction ends. Start a running log and set reasonable goals. You will see that remaining gluten-free will give you the strength and the ability that you used to have. Soon you will be back to the track meets and winning races again.

    Search this site and find the carb loading meals that other Celiacs use for preping for a race.

    Hope you feel better.

  14. I am one of those people that has a contact allergy to wheat in addition to Celiacs (Biopsy positive). My family is also full of other food allergies - nuts being the worst (anaphylactic).

    I have a toddler who showed signs of celiacs since 9mths. At 2 yrs I finally managed to get her biopsied. The results were inconclusive, but she has the gene for Celiacs. She has been gluten-free/CF for 9mths - against drs wishes. In that time she has grown more, ate better, slept better, and overall has made a HUGE imporvement in her health. Even though the Drs still argue with me about wether or not she actually has Celiacs, I see a huge chnage in her for the better. So we will continue with her gluten-free/CF, nut free, shellfish free diet.

    In my personal experience, I was so sick before getting a diagnosis of Celiacs that everything bothered me. I couldn't eat so many foods for throwing up or cramping up immediately afterwards. After being gluten-free for a few months all of a sudden those foods that I was allergic to or intolerant of no longer bother me.

    The reason I am tellign you all of this is that your child might be sick enough in her intestins that everything is bothering her. Keep her gluten-free and avoid all of those other foods for at least a couple of months and see how she does. If she is not a Celiac, she will be able to go back to eating gluten later. But for now, what you are doing seems to be working.

  15. We LOVE Disney - Magic Kingdom, Animal Kingdom, and Epcot!

    My family has several food allergies in addition to Celiacs and Disney made our trip great! This was our first time staying at a Disney hotel and we loved it. I would recommend staying at the Disney hotels to everyone with Celiacs or food allergies. They had pancake and waffle mix ready for us for breakfast. They walked me through the foods and what each of us could have. What a huge treat! My daughter had never had homemade waffles. All of our meals tasted great!

    You can use this if it helps your project.


    Southwest Florida

  16. I react to things like dish soaps, wipes, etc. Haven't tried the gels in years. Waiting to hear if anythign from Bath and Body works is safe. Anyone know?

    Try some "green" products. I now use Seventh Generation (buy it at grocery store) its a green eco friendly dish soap and my hands don't break out.

    I use JJ Baby soap for bathroom soaps.

    Just in the last year, my hands have been split open and bleeding for the better part of 6 mths before I made the changes to the soaps.

    Is it possible to bring homemade wipes to school? (baby soap, baby oil, and water and pour it over paper towles.) I'll find the recipe if you want it.

  17. I knew my youngest was in trouble before she was 1 yr old. By her second birthday I finally forced the Drs to test her. She started at the 75th to 90th percentages when she was a baby and when she got food the percentages started dropping. By the time she got tested she was at 3 percent for weight and 7 percent for height and the Dr still said she was fine, just petite!!!! The biopsy was inconclusive, but she has the gene for Celiac. So we went dairy free and saw small improvement. (She was always intolerant of dairy.) Then against the Drs wishes I made her 100% gluten-free/CF. Waalaa I have a new kid. She is growing, she sleeps, she isn't starving, her moods are so much better! She seems to have DH, but I have not had that tested yet. Her percentages are around the 50th now and she has been gluten-free/CF les than a year! She grew through three sizes since going gluten-free/CF! I am thrilled.

    None of her Drs thought she had Celiacs. I have it and it runs in my family. All of her Drs tried to talk me out of it and question whether I really had celiac disease. (I have a positive biopsy.) So in the end, her pediatrician agrees that the diet makes a world of difference in her and keep with it.

    I would try the gluten-free/CF diet with your son for a few months. See what happens. Keep a diary about his eating, sleeping, growth, weight, potty, moods, speech, attention, etc. For mine, the changes that were not expected were the ones that have become the most important. (Moods, attention, laughter, no more clingyness, sleeps through the night, eats at meal times and gets full!)

    As for social things...it is hard sometimes and it makes the kids sad when their friends don't always get it. But for my kids, we bring dessert to share, we brign food and snacks that are safe, and this diet is just a fact of life. Some people have blue eyes, some people have brown, for most people wheat is fine, for some reason our bodies consider it poison. I explain it to parents and little kids as "She has some food allergies and can't eat everything you can, so we bring safe foods." Most of the kids are fine with that. Or bring something really good for the kids to try. Some parents will ask questions and some will not care or remember no matter how many times you explain it.

    The diet is not that hard. At first it seems beyong overwhelming, but it gets easier pretty quickly. Start with naturally gluten-free foods. Fresh fruits and veggies, plain unprocessed meats, and packaged foods that are gluten-free and others have recommended. (Van's waffles and Kinikinnik chocolate donuts) You can still eat out too. Go to restaurants with gluten-free menus or just order plain burger or plain cheeseburger with fruit is usually safe. I bring supplemental food into restaurants too. So order the drink and the meat and bring the rest from home.Just be discreet and they usually don't care. Keep in mind it is against the law to bring food into a restaurant in some states.

    Hope your little one feels better soon!

  18. Sorry you are having such a hard time withthe Drs. I've been there too. I think most of us have been there. Everything is female problems, but please don't commit to serious research about actual female problems.... drives me nutty. Not sure if you have a diagnosis of Celiacs yet, but that was a huge help for me. Now they just look at me in shock when I say I have Celiacs. "What do you eat?" is the favorite follow up question.

    Can you force the surgery? The drs office staff will hate you, but you need to get it done. Hope you feel better

  19. Assuming you know where Ada's is located. Colonial and 41.

    The first weekend of the month is 10% off and food tastings (for gluten heads :P )

    The second weekend of the month they have tastings of gluten-free foods! That has been so helpful in finding what my gluten-free/CF toddler will eat!

    Looking forward to a local suport group.

  20. I'm right there with ya! My youngest has Celiac and I think the DH too. It has been such a problem just to get her diagnosis. She is finally growing and doing great. She has allergies to three or four foods that I can pin down and still something else sets her off. I haven't been able to figure out what sets her off. She turns wild, hard to settle, behavior is just off the charts and then comes the diarrhea and rash. It lasts for a solid week of hell. Drs aren't really a big help in figuring her out. I am also nervous about when school starts and what will happen. I see the ADHD label coming her way by 2nd or 3rd grade. I just hope by then either she is better able to listen and focus or I found her trigger item.

    As for the "hyper" label from others, give him a good nickname and have a comeback ready to correct people. Something that makes a positive attribute about his ability to be so active. When someone says he is so hyper, reply with "yup, he's my future CEO, always on the go, always thinking". Or a comment on his ability to sleep through a tornado (I'm optimistic.)

    I hear the "tiny" and "wild" comments for my little one. I use a variety of nicknames and comments with people. I don't want her growing up with the thought that tiny equals weak, delicate, or breakable thought. I think she'll catch up in size, but it may take a while. Her nicknames infer toughness and power (it fits her).

    Hope you have luck finding the item that still bothers your son.