Celiac.com Sponsor (A1):


Join eNewsletter


Celiac.com Sponsor (A1-m):



Join eNewsletter

ryebaby0

Advanced Members
  • Content Count

    502
  • Joined

  • Last visited

1 Follower

About ryebaby0

  • Rank
    Star Contributor

  1. I say this all the time, sorry for the repetition:

    If you really feel like he's not responding growth-wise (and it will vary, but you should see some response) have his zinc levels checked. I never knew it mattered -- zinc? -- what's that for? , but when my son was dx that was one of the first things they added to his meds. Apparently, a zinc deficiency (common in newly diagnosed) really hampers growth. He took a zinc liquid supplement (prescription) for about 4 months. Grew like a weed, and has been ever since


  2. What a nice thread! This fall, friends of ours invited us a small dinner party, and she had obviously "read up" on x-contam. issues and gluten-free food. But still, you don't hope for much. When we got there, ALL the food was "whole food" -- nothing at all he couldn't have, all served in glass, a separate grill covered with foil with a serving of the three protein choices for the night (seafood, steak, chicken) so he could choose whatever (he ate all three, actually). No bread or crackers in the place. Someone commented how lovely the food was and she just smiled and said "yes, fresh and unspoiled is so nice, isn't it?"

    My son's friends in marching band always buy munchies at Wegman's for him. Teenagers, in my experience, are much more sensitive and thoughtful than adults!


  3. I don't think these people are irresponsible, giving them the benefit of the doubt (which they may or may not warrant). I think they are ignorant. And if we, as parents of children with specific issues, get nasty and remove our children from every situation that isn't working perfectly, they will spend their lives at home, or never without us, or tagged as "that difficult child with the difficult parents". Worse, every OTHER child who comes along will be met with apprehension. None of that works to our advantage or our children's safety. It doesn't, imho, have to be an either/or situation. You can correct people, teach people, without resorting to ultimatums, and I do believe that takes patience and a ridiculous amount of time. The ol' honey or vinegar axiom is largely true. I agree it isn't fair, or easy, or ideal, but in my experience at least, it works better.

    The question isn't "can I make these people get it" it's "do we want to her to participate so much that we are willing to do whatever it takes to make her safe here". (Not that I am at ALL saying our original post-er isn't doing everything). Each experience will have a different answer. But your mileage may vary :)


  4. I was the Christian Ed director at our church of 450+ for about 10 years, so here's my perspective and some unsolicited honesty...

    ..Churches have extremely variable and inconsistent volunteers, and policy "enforcement" because of that. Because you tell one person something in no way assures that everyone "knows". Because they try a strategy doesn't mean they'll stick to it, be able to find people to understand it, or otherwise make it effective. Also, in all those years, we had 3 children with serious food issues, and one was mine. It's really possible they've never done this before, and are trying. Also, the litigation issues involved in attempting and failing are HUGE. Many congregations opt to let you leave, rather than face the possibility that you are a vengeful person who will take their building (the result of a lawsuit loss, inevitably) because of a perceived "guarantee of safety" that fails. Vengeful, btw, would look like calling up someone late at night to listen to a child scream....

    That being said, they clearly need to do better. (There are several churches in our area that are completely "peanut free", for example!) Our church does not do snacks, both because of cost, and the rising allergy issue. When we do, someone calls anyone identified with an allergy to let them know. (Snacks tend to be jello, apples, and popcorn). We ask any new child's family for medical info. We log it in an attendance book, but honestly we rely on knowing our kids personally. Not a good strategy, imho, but I'm not in charge any more! My advice to first become a regular attendee. Someone who comes sporadically is just not going to get anyone's attention or consistency. Secondly, I would attend with your child until you are sure they've got it figured out. Your presence indicates how seriously you take this. Thirdly, I would arrange for a safe-and-secure stash of snacks for your child, and start e-mailing whomever is in charge each week "Hi, I'm just checking in about snack for this week". The gentle thorn-in-the-side....

    People don't have any idea what it takes to manage food issues. They aren't mean, or unkind, or insensitive, they are just clueless. It's our job to gently educate them, which will always take more patience than we feel is necessary (or even available!).

    And if none of that works, talk to your pastor, and if that doesn't work, find another church.


  5. 5 years ago next month, my son was dying.

    5 years ago, he had already missed 2 months of school

    5 years ago, his doctors were working as hard as they knew how to diagnose him

    5 years ago, we didn't know it would get worse, much worse, before he got better

    5 years ago I cried when I realized he would never eat a Ritz cracker again

    5 years ago I cried when I threw out the toaster

    5 years ago I cried when I thought nobody would invite him to a party

    5 years ago, one door closed, and another opened....

    Now my son is bigger than me, and thinks celiac is "no big deal"

    Now my son is the top of his class, and his college of choice offers gluten-free meals

    Now my son's doctors know the whole picture, and are ready for the next celiac

    Now we know to embrace the good days

    Now I cry, when I see him dressed for the dance

    Now I cry, when his friends have a party and make all the food gluten-free

    Now I cry, when my parents clear off a shelf for his food

    Now I know that when one door closes, and another opens, it's okay to stand by the window.

    But most of all, now I know that we could never make these journeys without each other. Because through the dark beginning days, the "muddled middle", the grieving, the crying, the celebrating, the small victories, you have always been there. So happy anniversary, from me and mine...

    Joanna


  6. These are questions for your doctor, of course. But try comparing her height/weight percentile curve, not the actual numbers. She may still be progressing, or maybe she _is_ stalled at a percentile that is unacceptably low. Another thing to check is her zinc levels. I had no idea, but apparently zinc is essential to growth, and if she was deficient at diagnosis she may need a supplement. (To check her zinc, she'll need a blood test). My son took a zinc supplement (oral, pink and not-bad, not expensive, but prescription) for several months after diagnosis. I agree, it seems like she should be gaining more, but keeping weight on child celiacs is a battle. Peanuts! Butter! Olive oil! Ice Cream! Those are our friends :)

    joanna


  7. When my son was 10, he developed "intractable D" (basically, severe D that doesn't get better), severe joint swelling, and lost 15% of his body weight. In retrospect, he was always very small, slow-growing, with digestive issues and lots of gagging over food, especially (wait for it) cereal..

    We were all tested after his dx. My other son and I were clear negatives, my husband's doctor said he was "mostly negative" so we asked to see the test results. His tTg was "borderline" but my son's GI said there is no such thing as "borderline" so even though he had no raging symptoms, my DH went gluten-free. The change in his health was astounding -- energy, joint pain, GI symptoms, weight gain for the FIRST time in his adult life (he's a very skinny guy), brain fog/memory issues lifted. My husband's grampa died of bone cancer, his gma has IBS (we suspect a misdiagnosis, but at 93, she just doesn't care to know at this point). His parents were tested but were negative; his brother refused testing.


  8. As most of you know, my son was dx 5 yrs ago next month, and was off-the-chart underweight. He's now in the 50th for weight, and 80th for height -- he's grown 8 inches and is closing in on 6ft. (He's 15 now)

    One thing I haven't seen mentioned: if your child has bloodwork done, have their zinc levels checked. Children's proper growth is drastically slowed by a zinc deficit, which is often present in malabsorption cases. My son took a prescribed zinc supplement (an oral liquid, pink and gum-flavored but "icky") for 3-4 months. Who knew?


  9. It must be very hard to have one dx so young. Imagine how confusing it is for him, to sometimes be allowed gluten, and sometimes not. Try and think of it like playing in traffic --- you'd just never allow it, no matter the circumstances, or how inconvenient, etc. But it is hard.

    In addition to all the great suggestions already, you might add some super-wonderful dishes. Special "gluten-free for you" dishes for special occasions, funky placemats, etc.. It makes eating fun again. I also second the "learn how to make it gluten-free" advice. Let him cook with you, and it will be even more interesting to him. (Even a 2yr old can stir, or be a cookie taster)

    Good luck. It does get easier, but some family members will NEVER get it. Don't let them rain on the parade, and don't make their belief in your diet part of what you need to continue.


  10. Good friends usually ask about gluten-free candy, and have a jumbo-sized treat for him at their house; he trick-or-treated with a friend with food allergies, and they actually kept score of who was "doing worse" with great pride ("I can have most of this. Paul can only have the skittles, so he won" they recounted).

    I'm not a huge candy fan, so my children could always swap a negotiated amount of candy for a mystery wrapped gift (usually a movie or iTunes card). Now that he and his friend have outgrown trick or treating, they hang out and watch an old scary movie, drink soda, and "rate" costumes as they come through. Postiive attitude = positive time :)


  11. I am not the celiac -- my husband and son are -- but I can tell you with certainty that you need to be gentle with yourself early on. It's grief that you feel -- grief for the food you can't just eat mindlessly, the dinners that will never be as simple, the eating out that will be calculated, the stupid well-meaning comments, the explaining and explaining ---- and it's okay to grieve. It will get easier.

    In the meantime, go ahead and cry (I cried often, in the grocery store!). When you feel there are things you simply cannot live without, write them down. On a good day, research that food and find a gluten free tasty version. Give yourself permission to buy expensive gluten-free things and then throw them away if you don't like them. Try every gluten-free bread until there's one you like. Buy fancy cooking utensils, a good gluten-free cookbook (or read the recipes here) and a spiffy apron. Get gorgeous plates.

    Remember that -- no matter how hard it is to hear -- there are people who have lost their children, parents, spouses to incurable fatal diseases. They would give anything -- anything -- to have to worry about those people's diets. Not to say that celiac is fun, especially not the first 6 or 7 months, I would never say that. But you will be able to get past this, and to a happier place. Honest.

    joanna


  12. Penn State's main campus here in University Park just this semester added a limited (very) gluten-free menu. Gluten-avoiding students/guests/staff can email or call one of the two dining halls that are offering it (there are something like 7 or 8 dining halls, plus many other eateries on campus) , request an item from the menu, and a manager will prepare it for their arrival. PSU is not making the gluten-free items, they are buying them from suppliers like Bob's Red Mill. There's food for breakfast, lunch, and dinner, and it's offered every day the halls are open.

    You can probably email food services at PSU; you'd need to google them but it shouldn't be hard to find. Their main page does have a comment/contact link, because we made sure to thank them. My oldest worked on campus this summer and picked up the info flyer; it doesn't seem to be widely distributed. (He's not the celiac, his father/brother are)

    joanna


  13. Two more things to add to all these great suggestions:

    I gave my son's teacher a list of mainstream food he can eat, (like Lay's plain chips, skittles, etc.) and we stocked a rubbermaid shoebox for her to keep in her closet for those "whoops" moments. It made _her_ feel better to have it.

    Also, for lunch I would pack a placemat along with the food. My son then had a guaranteed "safe" spot to put his food on every day. (Although he usually just eats right out of the lunchbox anyway, at 15)

    good luck! this is do-able!

    joanna


  14. I wasn't sure where to post this....

    My son works at one of the PSU dining commons, and just brought home a new flyer that says

    "Penn State is happy to announce the introduction of a gluten-free menu to accomodate the special dietary needs of stduents and guests with celiac disease". It goes on to list common sources, how to contact dining services, and lists the daily breakfast, lunch, dinner and desert items they are purchasing from Bob's Red Mill, Rich's, and French Meadow Bakery. gluten-free diners are asked to either call ahead, or ask for a manager when they arrive who will take care of the request him/herself. Only two of the dining commons will have this option, but still! WOW!

    University Park has 40K students! They will be offering gluten-free pancakes, rolls, soup, hamburgers, pasta, chicken, PIZZA, cookies and brownies :)


  15. As the non-celiac (but still the cook) in a household of 4 that's 50% celiac:

    we don't have wheat flour, or flour-containing mixes, in the house at all. You cannot GET the stuff out, once it's open...

    we do have a top shelf of gluten-containing food in a pantry separate from the rest, and a sealed box for bread.

    we do have a cabinet of gluten-baking/cooking items (mixer, pans, blender)

    We use only stainless steel cooking implements, and never cook gluten-free and not gluten-free at the same time.

    we do have a "no gluten" island (literally) in my kitchen. We also have a "gluten zone" at one end of a counter. At the end of the day, all counters are washed off

    we do label ALL containers (pb, jelly, butter,etc.) as "not gluten-free" or "gluten-free"

    the non-celiacs wash their hands after EVERY food contact. We have the cleanest hands in the world :)

    This has worked for 5 years, with nary a glutenation. You just need to figure out what works for you.


  16. It depends very much on the individual, but it could be as quick as a week to see some improvement or as long as a month. Longer than that, and you want to double-check her diet and everything else that contacts her hands/mouth. It will be longer for a 100% recovery, but certainly it's reasonable to expect some improvement along the way. I agree that you might want to cut out dairy for now. Many recovering celiacs are temporarily unable to digest dairy (long, boring, medical reason) and that can keep her symptomatic.


  17. It is true that the Americans w/Disabilities Act requires school districts to make "reasonable accomodations" for students with documented medical food issues. Our district (www.scasd.org) has forms you fill out, then you have a meeting with the food service director and then the building cafeteria director to determine what you can and cannot have. We have a friend with severe dairy allergies who has negotiated with great success. We know celiacs who have also done it successfully -- but he eats the SAME THING every day. Ick.

    We've chosen to send lunch, which (when it needs to be) the cafeteria staff reheats in the kitchen microwave. Never had a problem, or even been given a rough time; they couldn't have been nicer about it. In grade school a teacher saw my son's quesadillas plated up and ATE them, and boy did the lunch ladies give her !@#$ about THAT! (they kept Amy's mac/cheese in the freezer for emergencies, so he did eat). He starts 9th grade in a few weeks and already they know he's coming (but typically the first 2 weeks or so we send room-temp lunches, it's just easier for him to not worry about lunch on top of all the other back-to-school stuff)


  18. Most McD's soft serve (as opposed to DQ) have a doohickey that keeps the cone away from the housing, so I wouldn't worry exceptionally about cc of your dish. If you want the deluxe ice cream experience, go to Cold Stone Creamery, where they will make your order on a separate slab, with newly cleaned servers and ice cream. Nice people....

    I once had a server ask why we worried about "glue" on our steaks. Explaining further, she lit up and went "OH, Gluten! No, there's no sugar, either"..... Ya gotta laugh :)


  19. My husband was dx when he was 40, only because we all had celiac panels after my son was dx. DH had no obvious and glaring symptoms, but once on a gluten-free diet he felt, digested, and thought better. He had of course assumed that his minor symptomatic episodes were how everybody felt about life. Anyway, my point is that yes, your daughter could be celiac and ought to have a tTg run to find out. Knowledge is power....


  20. Has anyone had steroids due to celiacs though? None of you have answered in the positive, that means that it must be pretty rare, even though it was what the celiac society told us to... i'm totally confused :huh:

    Yes, it is rare, but not unheard of. There are lots of case studies of steroids used in celiac treatment for cases that do not respond. There is disagreement whether some celiacs need steroids, or whether it's a different condition altogether. My son was already dx celiac and was npatient for continuing decline despite being on a very strict gluten-free diet. He was on prednisone and prednisolone (or however you spell it. It's pred through an IV) because he was not responding to dietary change alone. He was diagnosed with something called autoimmune enteropathy in addition to celiac disease, but some doctors think that is just a variant of celiac. Depends who you ask. Again, I would ask how long they would want her on steroids to see good changes. (Never ask doctors what they "expect" to happen! Oooh, they hate that questions!)

    As part of his recovery, he ate nothing but rice and chicken for 4 weeks. And a prescription nutritional drink called Peptamen. Sometimes an extremely simple diet is (ironically enough!) very comforting and stress-reducing when you are uncertain about food issues. I assume you keep a food diary, so you know what she's eating?


  21. Now to my problem ;) They want to put her on steroids for 6 weeks, possibly as an in patient in hospital, and i want to know if there is any other option, and what are the side effects of steroids. Should i wait longer and see what happns?

    IBut i am scared - i know hospitals are useless places for celiacs, and i would have to be in isolation, to make matters worse...

    My son was on steroids for an inpatient stay, and has been on non-steroidal immunosuppresive drugs ever since. He has autoimmune issues apart from his celiac state. Side effects of steroids are serious and real, but generally apply to long-term (like months) use. They include slowed/stopped growth, stomach issues , very depressed immune function (no vaccines, or exposure to people with illness, or germy places like big public venues) and bone issues apart from the "moon face" and ravenous appetite. but most of them are not permanent. But again, it depends on the dose, and the length of time. My son's best friend has lupus and was on HUGE doses of prednisone with no permanent ill effects to speak of.

    Why do they want her on steroids -- that's a question to ask. Don't be afraid to ask why they think that's their best course of action. What do they hope to see change? another good one. Why 6 weeks? What if it doesn't get them the results they want -- what then? Most pediatricians are cautious about the use of steroids in children, but the truth is that sometimes they are the only thing that will help, and short-term they can stop an irate body long enough to get its act together again. My son would have died without them.

    Ask lots of questions, and write down the answers. Hospitals are not useless places for celiacs! If she's off dairy, has been allergy tested for other food issues, is strictly gluten-free and still losing weight and has gastric distress, this is serious stuff. Just waiting to see if things improve when they haven't after all this time may not be a great idea, but you just can't know. Ask, ask, ask.

    Why would you be in isolation, if you don't mind the question? Hang in there!


  22. When my husband and son have gone to Scout camp, we sent all their food (frozen home-prepared meals, packaged and labelled for each day) and it was kept in the kitchen walk-in. I also visited camp in person to talk to the cook My dh would get their food and nuke it himself (the kitchen was unbelievably unkempt and run largely by teenagers). Nobody got sick, but we were always profoundly annoyed that we still had to pay full price for camp. No amount of negotiation could get the council to move on the price! We have done similar things for the times my son has travelled alone and it has gone well. Always talk to the people who are in the kitchen -- not just the managers.


  23. Our church has a sealed rubbermaid box with "GLUTEN FREE" written on the top, along with a warning to wash your hands before/after and all that stuff.

    Inside the box:

    a cut-glass butter dish with a lid, and a piece of modeling clay to stick the cups in so they don't topple

    a pile of disposable communion cups

    a box of Cokesbury gluten-free communion wafers (www.cokesbury.com)

    (but you could put almost any gluten-free bread product)

    The communion stewards (I helped the first few times) prepare my son/husband's communion elements first, and place the closed container at the side of the tray with the rest and it goes on the altar. When it's their turn, our pastor hands them the still-closed container. Or if we are doing it all together, someone brings it to them. With a closed, impermeable container, it doesn't matter what their gluten-free elements are near or who has touched them. After communion, their set is washed separately (by me, usually) and put away again.

    Talk to your pastor. Catholic celiacs sometimes have trouble with the literal use of bread, but Protestants should have no theological obstacles! And if there's a common cup for dipping, they need only provide a second cup for you!

    joanna (united methodist -- the disorganized organized religion!)