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ryebaby0

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About ryebaby0

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  1. My son just had a tTg/celiac screen repeat (something his GI does every 18 months or so, even after 8 years) and it was negative. My son eats a large order of McD fries two or three times a month, and always has. (Naturally, we stay away from super crowded or super dirty McDs, and yes, I know they are bad for him in other ways, I don't care, it's a normality issue) The presence of "wheat" on the label is more of a legal stance than a food issue, but this is all a highly charged issue for people. We eat them.

    I would NEVER "test" my son. Firstly, how will you make "no gluten" stick when he's testing YOU on that? Later in his life, you don't want him to become a damaged celiac who thinks it's okay to cheat "sometimes". Secondly, how can he trust you to keep him safe if you slip him some gluten on the sly? How will he learn to trust anyone else to feed him (and you need him to do that in school settings) if his own mom gives him poison?

    I get the reaction problem, my husband is a silent celiac. But no, I would never give it to them on purpose.


  2. They can't deny you health insurance, but that's not the same thing as 1. providing it at a price you can afford or 2. getting free medical care when you have no insurance at all, unless it's life-threatening (like arterial bleeding!!)

    My son was dx w/ celiac and did not improve; he also has something called autoimmune enteropathy. His gi system is being attacked by his immune system, and he requires meds to control that. He was diagnosed at Children's PGH and Johns Hopkins but AE is very, very rare.

    I would contact social services for your county, or a patient advocate office at the closest major hospital. Be polite, but firm, because this is serious. Find someone who understands that. If that isn't working, try a local church, and see if they can hook you up with services/people/information.

    In the meantime, find a simple diet she reacts least to: my son lived on nothing but rice and olive oil for about 3 weeks, then rice/oil/chicken for two more, then rice/oil/chicken/spinach...you get the idea.

    Your doctor, by the way, is an idiot. ;) What part of the country are you in?


  3. We're 8 years gluten free and this is what we use (apart from mainstream cookbooks -- big Rachael Ray fans here!)

    Gluten Free Kitchen by Roben Ryberg (basic stuff but without the endless lists of funky ingredients or yet another gluten free flour blend)

    Incredible Edible Gluten Free Food for Kids Sheri Sanderson

    Gluten-free, Sugar-free cooking by Susan O'Brien (has some really inventive and yummy ideas not found elsewhere)

    Gluten-Free Quick and Easy by Carol Fenster (I wore out my first copy, and bought two more -- one to use, and one for when my son moves away)

    I started photocopying frequently-used recipes for a 3-ring binder. This way, I don't have to sort through a bunch of books trying to find a certain recipe (can never remember who wrote it!) and ones from Food Network, Living Without, etc. are all a standard size and in one place.


  4. The pediatrician wants him to gain weight, the peds GI is unconcerned but nothing much bothers him. Between the braces and the meds, I feel like we're stuck. He hates avocados (first thing we tried, and he's a pretty open-minded eater). He has little muscle mass to speak of. He has said he worries that doing anything physical will just burn calories, but without the muscle he'll never gain weight. He does love rice and beans though...and yes, we cook with olive oil and butter. He eats pancakes, quinoa, and yogurt with abandon, but coconut milk might be a good idea...


  5. We put butter in all his veggies, and switched to whole milk. He eats cheese as a snack, frosting and cookies, pretzels and pb. (not all of them at once!) Has a pint of uber-rich Haagen Daz vanilla ice cream every single afternoon snack. Has a fruit smoothie (yogurt, whole milk, fruit, honey, flaxseed oil) and peanut butter toast and/or cinnamon roll every breakfast.

    Naturally with all this high-fat food around, I am slowly gaining weight. Yet he is not! I know teenage boys burn high (have other sons at college)but honestly, it's starting to freak me out. Keep those ideas coming!


  6. My 17 y.o. son and I are looking for weight gain ideas. Yes, that's right -- he is trying to gain weight. 5'10" and on a "fat" day he weighs 120, which puts him in the 1st percentile for weight. We're concerned, and trying not to be alarmed.

    No, he's not getting any gluten(he's been gluten-free for 7 years, we know what we're doing). No, he's fine in every other health way (no thyroid, no metabolics; his immune dsyfunctions are stable and monitored closely by his docs). He just can't eat enough calories:

    He has braces -- no nuts, sticky things,etc. Celiac, obviously. Has the world's smallest jaw, so chewing takes forever. He takes meds that stress his liver/kidney, so lots of protein is a no-no (Say goodbye to Boost, Ensure, energy bars).

    If you have ideas, please send them along. Right now he reads dieting articles, and reverses the advice!!


  7. The McD's controversy is pretty well documented. My son eats them regularly with no problem (and his tTg is tested once a year). Red Robin's are independantly owned so you'd need to ask. (We were once asked to leave a Red Robin in Harrisburg PA; the manager didn't want us to "risk illness" by even being inside). BK is notorious for their poorly run deep fryers (how many people get a "free" onion ring or chicken nugget in their fries?) Some Wendy's are dedicated fryers, but most are not. Outback fries are not gluten-free, neither are Ruby Tuesday's or EatNPark.

    No restaurant will guarantee food is free of CC. They are opening themselves to a lawsuit if they do --- you just have to ask, and fries are high on the list of hard-to-find


  8. All these suggestions are really good -- my son was dx when he was 9, my husband a few months after that. Grieving is very real. Reassure her she won't always feel this badly. It will take months to adjust. BUT...some other things to try that worked for us:

    gluten free cooking school...I bought a set of utensils (basics, in colorful/fun styles). He and I cooked, the family tested, I allowed him to throw out icky stuff (and there was about a 40% fail rate!). Then we worked up to recipes. I even filmed a "lesson" to youtube to relatives. Invite her friends. Make it all a big adventure. (Fake enthusiasm if you have to)Encourage risk taking, planning, bonding!!

    The "bleach" metaphor is apt. She will pick up your attitude, and you need it to be compassionate but no-nonsense. Do not feel sorry for her. (okay, do that when she's not looking)I would not bring her into a grocery store just yet. Unless it's a Whole Foods or Wegmans!!

    Never, ever, EVER cave in to a gluten demand. Here in the early stages, that's especially important. Remember the bleach!!Our mantra was, and is "we'll find a way to make it work" but we also leaned on "everyone has something, this is ours". And if he would say "I can't have......" I would just reply "but you can have......". I believe children test us, poke at us with those emotionally charged questions, to test our resolve. They want to know that we feel it's not the end of the world.


  9. Like the others, we've contacted the caterer or event organizer, and if we give them specific brands or specific directions, they can usually provide something. High-end events are even more likely to be able to accomodate. My husband does always eat before he goes, however, just in case something goes wrong.

    Remember -- every time we ask for gluten-free food, or peanut-free, or whatever, the caterer/planner gets a reminder that we are out here! Remember when vegetarian selections were "weird"? Progress is made one plate at a time


  10. My son was dx 6+ years ago, and was originally diagnosed with juvenile rhematoid arthritis, his joint symptoms were so bad. He would often wake with leg pain and tingly limbs. Now, he is a normal, healthy, somewhat skinny teenager. It might be helpful to know your son's levels of zinc and potassium-- sometimes they need extra early on. Make certain he takes a good multi, stays well hydrated too. Time is your ally here, and you have every reason to believe these symptoms will subside in the next year. (Which seems like forever, I know. But it's not permanent)


  11. "The other hard thing is managing school and parties there. It makes me sad that our daughter can never have the treats people bring in. I have notified her teacher, who is wonderful about everything, and think I will just volunteer to be the one to bake the goodies for the

    holiday parties at least. That way EVERYONE can have them and no one is singled out. That is really hard for me, but our daughter has been so good about it."

    It's fine to bake the goodies for now, if it helps you make it through, but many schools are moving towards a "healthy snack" kind of policy, so fruit, veggies, water, etc... are always good choices that tend to suit everyone. And other people can bring things that are gluten-free (tostitos. Gogurt. popcorn. hershey kisses) Also, remember that lots of kids can't have everything --- the peanut, dairy allergies, the "i hate chocolate" kids or the "it looks squishy" kids --- your daughter won't be the only one who can't have it all. A stash of things she can eat, kept at the school, will be enough to make you both happy.


  12. Hardest part was learning which advice to trust --- there's quite a bit of bad information out there to stumble across. The diet is not so bad as you imagine, nor are the birthday parties, etc.. Just don't try to do it all at once! We just gave up on bread (like for sandwiches) as not worth the bother. Keep an open mind and if you like to cook, it can be a fun adventure. The first 6 months are definitely the challenge, and then one day you wake up and realize it has just become part of what you do. You can SO do this!!


  13. My son is 16 (dx at 10). Just a few things off the top of my head: it's pretty typical to feel good and optomistic, and then feel overwhelmed and grieving -- so be ready for that, with her and with yourself. It's really important to keep a positive outlook. It's important you never, ever condone cheating.(She'll cheat. It will make her so sick, she'll never do it again) Resist the urge to feel sorry for her. (I remind myself that no matter how inconvenient, isolating, or hard a gluten-free diet can be -- parents of children lost to leukemia, kidney disease, etc. would have given ANYTHING to have a disease that you can survive and manage)

    Summer vacation is a good time to work on slowly building cooking skills. You are correct -- she needs to know how to cook, in order to go out in the world without you. Start with simple stuff like pasta, eggs, maybe one or two great cookies (the Good Eats guy on Food Network has THE BEST gluten-free choc chip cookie recipe!). There's lots of time. Invite her friends over for a fancy dress-up dinner party. Assume many mistakes will be made! But what a great way to encourage adventure, independance, and novelty.

    Encourage her to join one of the many teen-oriented celiac lists. There's a whole thread here for celiac teens, too; more out there to be found. Someone else might have a teen-specific book but I don't know of one. There's a project for somebody!!

    Good luck, and hang in there


  14. To answer your question, it is unlikely (but not impossible) that both the blood work and the biopsy would be negative if she is celiac. You are correct -- a endoscopy could miss a "celiac" spot in favor of a "normal" spot but remember they are in fact looking through the scope to find likely areas of damage and biopsy those, and they will take several biopsies from different sites in addition to photos. (Or at least that's how it's been for us. My son has had 6 or 7 endoscopies -- not the norm, for sure)

    My husband gained 18 pounds after going gluten free. My son gained, in the months after dx, about 30 but he was severely underweight so that amounted to becoming normal-but-thin .

    Barring any other course, the pediatrician, dietician, or peds GI can prescribe a supplement called Peptamen Jr. Tastes like a blah melted vanilla milkshake, although it is often given via tube feedings (nose/throat). My son drank 8 cans a day for about 3 weeks. (Ensure is similar, but it tastes bad and isn't as balanced; it's very high in protein which is hard on a delicate system)


  15. It would be interesting for YOU to have a celiac screen -- ttg test -- to see if your Crohn's is misdiagnosed celiac. But anyway....the 19th is as fast as specialists move, and they've moved you up from April. It's a week (which is forever when your child is sick, I've been there)

    If it were me, I would take her completely off dairy, and off gluten until then. Yes, yes, you need to be eating gluten to get a reliable blood test. But she's already had one! If she's gluten free until the 19th, and her symptoms subside AND then her NEXT celiac screen is negative (that 252 comes down into a normal range) well, that's pretty conclusive too.


  16. My son was dx almost 6 years ago now...here's the happy news

    1. he grew a million inches, and has never been sick again

    2. his teachers and schools have been, without exception, willing to accomodate him and help him have uneventful days --- from the treat boxes in elementary, to his own microwave in his teacher's room this year

    3. he's learned independance, advocacy, and compassion in ways that have made him a phenomenal young man

    4. his friends don't care what he eats. At all.

    5. he's gone to Scout camp, trips with concert band, and away football games. You learn to make it work

    6. he loves to cook. what woman isn't going to want him for life?

    7. we have parties and go to them. his friends either learned what he could have safely, or he learned how to read labels. we only throw gluten-free parties.

    8. His doctors have taken it upon themselves to be more celiac-educated, on his behalf.

    His life is good. Our life is good. Yours will be too


  17. You've not posted and I'm worrying your daughter's condition is even worse! But let's hope you are just busy...

    I would get her gluten free now. The diagnosis being "official" is less important than her health. My son was dx after a rapid and debilitating weight loss that put him in the hospital for 7 weeks. He ate (after about 14 days of direct stomach feeding -- an naso-gastric tube) only rice and chicken with olive oil. It helped him gain weight and recover while he healed, but you may need a prescription product called Peptamen if she worsens. Rapid weight loss is terrifying and needs to be addressed, your instincts are right. Variety be damned right now, you both need some comfort and security.

    Try something simple for both of you -- a diet of only a few foods. The specific carb diet is (in my humble opinion) too complicated for a mom already facing a crisis. No reputable doctor will dispute the diagnosis if she becomes markedly better on a gluten-free diet; the myth of the 3-months of gluten to be tested is just that, a myth. There are many good doctors who do know what they are doing. If she doesn't respond to a gluten-free diet in about 10 days, take her to Boston Children's. Don't be afraid to call and insist, paint the picture of her dangerous situation.

    Anello's in Portsmouth is an entirely gluten free bakery. Rafferty's up in N Conway is a gluten-free restaurant. NH is a great place to go gluten-free (Hannaford's also carries a great many gluten-free things, as does Shaw's)

    PM me if you want, we've been here before! Hang in there


  18. Another thing could be yogurt parfaits -- clear plastic cups, layers of fruit/yogurt. You can eat those for breakfast, too! We do nachos and quesadillas at our parties as well, but you might get tired of heating them all up. Popcorn and raw veggies are popular too. Another long-party tip is to give them a new food every hour instead of putting it all out at once.....


  19. What if....

    ..you buy cheap plastic tablecloths. Cover all the eating surfaces, and get the teacher to buy in to "we all eat sitting down". Once eating is over, hand out the wet wipes at one location, while the food, etc. are all wrapped up in the plastic tablecloths and discarded. (that would include where your son eats). 90% of the gluten is now gone.

    ..it is a wonderful teachable moment for children to learn that "our pizza might make ..... sick" so they have to wash their hands. But I wouldn't try this if you can't be there. Staying home under those circumstances makes sense, and sometimes it's the best idea. Imagine if every child with a food issue just stayed home for pizza parties -- retiring principals would start to come up with better ideas!


  20. My son was dx with JRA before his dx of celiac disease, due to grossly inflamed finger joints and ankles so swollen he walked with a pronounced limp. (It was the limp that first sent us to the doctor) Several peds rheumy visits, solid test results, and started on NSAIDS, he then began his celiac crisis and was dx (12 weeks or so after JRA) with celiac too.

    Once gluten free, stabilized, and healthy, (about 6 months) all his "jra" symptoms disappeared and the diagnosis was realized to be incorrect. All his symptoms were severe untreated celiac disease. They have not returned in the 6 years he's been gluten-free.


  21. My son did this (although he was 10) with the help of his teacher and school counselor, his classmates wanted to know why he got to eat other stuff. It was a great time. The presentation included some xrays and 'scope pictures, but mostly centered on this pile of gluten-free yummies we brought in to share. I printed and laminated 4x6 card of the "gluten-free basics" and the reverse had a list of common food he could eat (but we had a plastic box of food for him in class, just in case) ; we used to give a copy to every teacher at the beginning of the school year but now he just brings one if somebody asks.

    He's almost 17 now. His friends always make sure to bring something gluten-free for him, or let him go first, or just don't eat. They keep un-informed people from contaminating his food. (You know how pranks in cafeterias can go!) This year, a girl in his lunch period was passing out cake for her bday and she had bought a bag of gluten-free pretzels for him -- and this is just an acquaintance. It is part of him, but no longer his defining trait.

    My point is just that food becomes less and less of an issue as they grow up, and as more people know about her issues. It will, in time, become just another part of her, no more or less exciting than a diabetic child, peanut allergy, or ADHD student (they all get accomodations too). Perservere, advocate, smile relentlessly!


  22. If you go to our school district www.scasd.org > services > food service you can find copies of our wellness policy (our district prohibits selling candy as a fundraiser, parties with candy, or rewards of candy or high-fat items) in addition to the form you fill out for a special diet request. That's how you get gluten-free meals for a student, although more typically you just talk to your child's cafeteria manager. For years, my son brought his lunch and they kept it on the "allergies" shelf in elementary school -- now at the high school, they have access to a microwave that is cleaned every period. Good stuff. Good luck!


  23. Educating the teacher about food issues is an ongoing issue, and think how you would react if someone bombarded you with information on top of requesting alternate activity. Which is more important to you right now?

    If it were me, I'd ask if your child could join the no-food-activity afternoon class for the day. If that's not okay, I would simply keep her home and make our own gingerbread(cut the recipe in half!), and bring it in the following day for show-and-tell. I don't see that as caving in -- imagine if all the food issue children bail on cooking. The teacher would quickly get the desired message of "cooking is not practical in this setting" and stop.

    If cooking were a weekly thing, then opting out wouldn't work, but if it's truly a rare occasion, I would save my energy for a bigger battle. I have two celiacs and tried keeping wheat flour in the house --- always made someone sick, no matter how thoroughly I cleaned and/or covered things.

    joanna


  24. Not going to enter the debate directly, but two good reads about the issues:

    The Autoimmune Epidemic by Donna Nakazawa (it also has a website by the same name, but the book is better)

    Boys Adrift by Dr. Leonard Sax

    In a nutshell, these books discuss (in normal people terms) the many contributing issues: your carpet, your drycleaning, your vaccines, your plastics, your genetics. There is no agenda-bias that I could tell, just a lot of facts and research-sifting. These are mainstream books by reputable, qualified people.