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ryebaby0

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Everything posted by ryebaby0

  1. ryebaby0
    My son was dx with RA by his pediatrician, and that dx was confirmed by a peds rheumy.(Although she thought some of his numbers were inconclusive, but his symptoms were severe so she started prednisone anyway) Hands, knees, ankles were the worst, it was the pronounced limp and inability to run (he was 9)that first sent us to the doctor. He had pain at night...
  2. ryebaby0
    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...
  3. ryebaby0
    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...
  4. ryebaby0
    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...
  5. ryebaby0
    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...
  6. ryebaby0
    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...
  7. ryebaby0
    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...
  8. ryebaby0
    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...
  9. ryebaby0
    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...
  10. ryebaby0
    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...
  11. ryebaby0
    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...
  12. ryebaby0
    "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...
  13. ryebaby0
    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...
  14. ryebaby0
    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...
  15. ryebaby0
    On several occasions, my son's endoscopies included views of the entire ileum (so I suppose technically they were endoscopy/colonscopies). Once they have you "out", they will do what is sensible. Celiac is typically confined to the small intestine and that's why typically only an endoscopy is required.
  16. ryebaby0
    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...
  17. ryebaby0
    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...
  18. ryebaby0
    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...
  19. ryebaby0
    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...
  20. ryebaby0
    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...
  21. ryebaby0
    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...
  22. ryebaby0
    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...
  23. ryebaby0
    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...
  24. ryebaby0
    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,...
  25. ryebaby0
    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...
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