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ryebaby0

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About ryebaby0

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  1. For restaurants, we say "he has celiac disease, which means he reacts to wheat like an allergy" and then we give them a GIG restaurant card. (But honestly, we eat out soooo infrequently this isn't a problem) Or I'll say "he can't have the bun" at McDonalds "he'll react right here in the store". That last part ALWAYS gets a waiter's attention :)

    For new friends, we just say "he can't have gluten, which means wheat, rye, oats or barley" and leave it at that.

    For old friends, we say "do you want us to send the food, or were you going to buy Lays Stax (or fill in with whatever else is appropriate)


  2. My son is nearly 15, diagnosed at 9. I am puzzled by your original statement that he "hasn't taken gluten out of his diet yet". This isn't something to negotiate. It's like wearing a seatbelt, or not playing with knives. IMHO, if he isn't going to cooperate, you've no real choice but to make your house gluten-free so he will have a "safe" zone (I have two teenagers, and know what goes on at school!)

    That being said -- he is in denial, and then will come anger, shock, and grief. It is very much a loss, so be patient but firm; understanding but not pitying. Let him have his own account here, have him join the Facebook celiac group, etc.... my son has four friends at school with celiac, and many more with food allergies. It's just not that rare.

    Give him time. Don't pity him, whatever you do. He is much luckier than children dying of rare diseases, disabled by accidents, etc. He has a bright happy future, but can't see that right now while he is grieving, so see it for him. I don't think reading a book will help him. I don't think education about the perils of not being gluten-free will help (teens are, after all, indestructible in their own minds, it's one of their charms!). Say "this is the food we have, eat it or don't but there's no gluten here for your safety and health". He is going to feel so much better in 6 months, he won't want to go back! Trust us!

    My son grew 7 inches the first year he was gluten-free, just so you know......

    joanna


  3. My oldest son (not the one with celiac) had night terrors several times a week for about 18 months when he was little (like 5-6y.o.). They are not uncommon in children, and aren' t a sign of anything in particular, usually. They almost always go away just as mysteriously as they arrive. They are more common in children who's parents had them, or were sleepwalkers (I was)

    We found if we got to him when he first started one (which was generally about 1 hr. after he fell asleep) it would be a little shorter. Occasionally he would sleepwalk, too! It surely is freaky! He would have absolutely no recognition of us, and no memory in the morning of having done anything but slept soundly. Our pediatrician said to not try and wake him, just keep him from getting out of bed.

    As everyone here will tell you , leg pains are often a celiac symptom. Whether she was glutenated or not is anybody's guess!


  4. I'm just going to answer your original question : YES, after 5 months gluten free, he should be gaining weight and feeling better. Either there's still gluten in his diet, or he has some other issues, or both. If it were me, I'd go back to your peds, or even better a peds GI dept. at the closest big hospital. Not to knock all the free advice, I don't think it's as easy as eliminating things and seeing what reaction you get. If there's something else wrong -- something beyond the scope of food intolerance or allergy --- you don't have an unlimited amount of time to find out. (Yes, the disclaimer --- as many of you know, my son was dx as celiac, but didn't respond. Turned out he also has other autoimmune dysfunction that only doctors could have found, and they did, but only just in time and only because we would not settle for "give it some time")


  5. A lot of on-line container stores sell what is essentially a large insulated tote bag. I use it a lot because with frozen items it stays cold a long time, but is easy to carry like a purse (over your shoulder). In 90 degree heat, not much is going to stay cold forever, so you might want to rely on frozen water bottles for the cold, and pack food that is less dependant on temperature!


  6. I think you are doing a nice job sorting through the issues. Remember that a positive biopsy is definitively "yes", but a negative biopsy is not definitively "no" so you could conceivably have a month of gluten misery and still no pathological signs of celiac disease, just clinical. Especially at such a young age (which is notorious for false negative by biopsy), a dietary change is more conclusive. A biopsy relies on so much damage that it can't be missed, but that's a lot of damage. They are taking micro bits from 30+ feet of winding intestine!

    Your mommy radar is always a good place to start. If it says no gluten, then stick with that idea. My son did not get better on a gluten-free diet, and it did turn out he had additional issues, and your child may have more going on. Doctors increasingly don't rely on re-introducing gluten, so it's not out-of-bounds for you to say you aren't comfortable doing that, and will rely on the dietary/clinical evidence of celiac for now.


  7. Red Robin corporate will always tell you not to eat their fries --- they aren't going to take the chance that you'll go to a franchisee and get sick, and blame it on them.

    We tried to eat at the Colonial Park PA (Harrisburg) Red Robin and were not only told they could not make any food and guarantee it's safety, but they asked us to leave so they could have the table since we would not be ordering for all of us. Yes, I told corporate. No response. I'm gonna guess that's a franchisee!

    On the other hand, we contacted the Christiana DE location and they couldn't have been nicer when we were scouting for restaurants. We didn't end up eating there, though :(

    Ruby Tuesday's used to be safe, but now many of them have given up dedicated fryers. You need to call ahead (I think I should have that engraved on my phone.....)


  8. Perfectly normal to be feeling guilty, and also like you need to be constantly vigilant. I will be honest and say I don't think I will ever get over the pain of some of the things we missed, but I try to let it go. And it's been 4 years!

    Your son needs vitamins, both to grow and to feel better.He needs calcium. He may need extra zinc, iron and folate, but a blood test will be necessary to find that out. Don't pity him. Don't let him do the "I've been so sick and feel so awful" thing that ends with you going against parenting common sense and radar. You wouldn't let him play in traffic, or run with scissors. A normal amount of grieving and distress is to be expected -- but you be a regular mom like all the others and say "mr, if you want to feel better, you have to do feel-better things like eat a fruit or veggie . " and let him help do the choosing, or whatever the therapist recommends (i realize you have some multiple issues here!)

    Milk intolerance is to be expected with early celiac disease diagnosis. That may well come back. Hang in there!

    joanna


  9. When he was hospitalized (after about 3 months of testing/illness/decline and 3 weeks of not responding to a gluten-free diet) he weighed 48 pounds, which is literally off the charts. He is now nearly 15; 125lbs. 5'9" (which are the 60th and 75th percentiles for weight/height) and apart from his particular combination of immunesystem malfunctions, perfectly healthy. He eats like a horse -- a fairly varied diet --- and you would not know he has an interesting health history by looking at him.

    He had no food problems until he became ill that year. We eventually kept a food diary and had started to suspect eggs too, but he was so sick -- life-threateningly so --- that more vomiting was hardly a definitive sign. In hospital he was RAST tested and that was the only positive. He stayed off eggs until last summer, when at my request they did an egg trial and he passed. I really felt that he had never had a food allergy, and considering how damaged his gut was and how challenged his immune system is, that it was a temporary thing as part of the celiac "crisis". Including eggs in gluten-free food makes it much more palatable!


  10. My son was hospitalized at 9 and due to the severity of his condition, was placed on an elimination diet. He ate only rice with olive oil and salt for about 3 weeks (breakfast lunch and dinner) plus 7-8 cans of an prescribed elemental formula (yes, by mouth. He HATED his ng tube) and then added another food item every 10 days. His peds GI let him make a list of the things he most wanted to eat, and then she told us which ones to add. As we were successful, after about 6 weeks we added one food every 7 days, and then two, and then his diet was unrestricted (apart from the gluten and egg -- he was allergic to that, too). I'm thinking we added potato, spinach, carrots, soy, first, and peanuts and milk were waaaaay at the end.

    My son actually was very, very comforted by eating such a simple diet. He didn't have to worry about getting sick, and we let him choose 4 or 5 foods he didn't want in the house (like french fries) until he could have them too. We got a beautiful notebook for the food diary, and let him be in charge of it. They need to feel like they have some control, I think. The monotony was broken up by different kinds of rice (all white rice is not created equal) and olive oil (ditto). We got some fancy plates, too, and he would sometimes pick what to eat from -- but by and large, it was a very positive experience. (Which sort of tells you had bad things had gotten!) It gave us time to learn how to read labels (another piece of control your son can master) and research ingredients, too.

    joanna


  11. FYI for those of you who travel between DC and NY, or are in the Newark, DE area for some other reason:

    We spent a weekend at the University of Delaware Marriott (a VERY nice hotel). As an afterthought, I emailed my customer survey in with a comment that since there is a great natural food store in town where I bought these gorgeous gluten-free foods ( a local outfit called Sweet Sin) , maybe the hotel would consider a gluten-free option for their (huge) breakfast buffet. (and save me the trouble of going and getting them!)

    To my amazement, I heard the same afternoon from the manager of the hotel who said he had spoken to the Exec. Chef. They are quite willing to stock gluten-free things if needed and are just working out how they would let people know that 's an available option. How cool is that?! I never thought they would actually LISTEN :)

    So, if you ever make a reservation here, be sure to ask if they can get gluten-free food for breakfast.

    Joanna


  12. A new thread, for an old conversation. Let's keep this brief, when you can, so we don't grow old reading all the good input that's out there. Venting is another thread! (And who among us doesn't have venting to do!)

    1. Does your child have a formal IEP, or 504 -- and BRIEFLY what accomodations have you asked for

    2. If you have an informal arrangement in your school, was it initiated by you, or the school

    3. Who did you contact when your child started school -- the teacher, the principal, or someone else?

    4. Did your school already have policies that celiac fit into, or not?

    Oh! And probably, add your child's age of dx and where they are in school now. Will that cover everything? Add what I've missed :)

    Joanna

    (whose answers follow:

    1. No

    2. By me, in August of each school year if we are changing schools (elem/middle/high school). We ask for access to a secure refrigerator and a staff member to heat up food as needed

    3. Teacher first, cc food service and principal and student services(counselor); follow up with cafeteria managers and homeroom teachers

    4. Yes (go to www.scasd.org and look for student services, food service, and special diet policies) but what we do is really outside that, arranged through food services for him as an individual. School policies discourage snacking in general, and some buildings are "nut free" (there's a joke there, isn't there?!)

    My son was dx in 3rd grade, and is going into 9th. My husband is also celiac


  13. Yes! Yes! Every district has someone who works on 504s. Find out who yours is. Write one yourself (knowing that it will be "wrong" in many ways, but it's a place to start)and make the appointment with that person. Copy your building principal and the teacher. Again, you are working on a "I just don't know where to start, can you help me, I don't need you to do the work for me" attitude. Troubleshoot the gluten-ing incidents (to the teacher: why do you think this happened? Was it something I didn't do? How can I help you with this? ) You want the school to realize you aren't going to sue them -- but you aren't going away, either.

    And when this seems like a ridiculous amount of work (and it is) remember that some new baby with celiac will thank you in 5 years, when s/he isn't the first celiac 504!

    Our wellness policy (in one of the largest PA districts) started as a collaboration between the district PTO council (reps from every building PTA/PTO), the health/wellness committee of the school board, and the admins of buildings. It probably took 2 years to get it done, but a good place to start is your school PTO, or PTO council. Bring it up there. Offer to work on a committee to research other district's policies. Write to your superintendant/school board and ask about a new policy. Contact other parents of food-issue children. Contact your local paper and ask if they have someone who covers the board meetings, and then go to one and ask about a new policy and how you would go about getting one that would cover allergies and general health issues.

    You sound like a great mom -- hang in there


  14. "Well how can parents be anything but clueless when they are constantly ignored and put in a position of not being made aware or consulted with issues that involve their children in school? It's a no-win situation. And once again, it ignores the concept of community. A community is at its best when its members are actively involved in making it work and grow. "

    I'm thinking we need a whole new thread! Let's keep in mind that school's vary widely, and some of us are seeing good things, and some of us are seeing bad things. Let's remember that the VAST majority of teachers are very good at their job. Unfortunately, many school boards and state dept. of educations are not good at theirs.

    Our district has a wellness policy that prohibits food as rewards, etc. and promotes healthy snacks. Is it a time-consuming effort for our K teachers to cut up bananas for 45 children? You betcha! Did they then ask for parents to come and help? Yup! And did anyone? YES. That's the community you speak of.

    I don't believe community is telling professionals how to do their job, when the state, school board, and 21 other parents also want the same input. If, in that cacophany of "advice" you want to be heard, you need to show up prepared to work, without threats (I'll homeschool, I'll tell on you, etc.), and already with a plan that is workable.

    Continually poisoning your child is inexcusable. Make sure you date/document each occurence. Clearly you need the weight of a 504 or IEP. And it might be a good idea to research other districts' policies (schools just HATE to be the left-out district!).

    Stay calm. Stay in an advocating, but not adversarial, position. 'nuff said


  15. My son was first dx with rheumatoid arthritis; the first symptom was a limp and leg pain. It was his rheumatologist who suggested running a celiac screen panel since his arthritis panel was "off" for a solid diagnosis. The limp, joint pain/swelling was gone within a few months of being gluten-free. Of course, it could NOT be related, too -- the pediatrician needs to see him....


  16. Have you had your thyroid checked in the past year? I don't know how old you are, but hair loss bad enough that you notice it (and dry, rough skin) can be a symptom of under-active thyroid (which is treated by taking a replacement hormone). I think every 40something woman I know is on some sort of thyroid therapy!


  17. Go! Go! Life is too short to skip parties :) and yes, it always takes some effort. But we decide what we want to do, and then figure out how to make it happen. A better outlook, I think, than seeing gluten everywhere.

    That said, I agree that at 4 y.o., you may want to take a book, hang in a corner, and make sure she doesn't forget and eat something bad. Talk to the bday mom BRIEFLY to make sure she doesn't think "just a little cake" won't hurt :)

    Have fun! You're a good mom for finding a way!


  18. I don't know WHY cotton candy (being spun sugar, and food coloring) would have gluten in it, but as for the sno-cones, what we have done for carnivals is bring a syrup we've verified ahead of time as gluten-free (or you can make syrup from drink mix!) and then asked for a "naked" cone. Then we add our gluten-free syrup!

    now if they could make sno-cones in non-staining colors.....


  19. I wanted to let those of you in the Pittsburgh area know that my son will be attending a school conference held at 7 Springs Ski resort, and I was really apprehensive about feeding him there.

    Well, these people could not possibly be nicer. They said we could put a micro in their room if we wanted, or bring a cooler of food which they would be happy to store in their kitchen and then they could plate/heat it, or if I just wanted to give them a list of food, they would get it OR I could just tell them "what they want to eat" and the cooks would make it separately. And yes, this was AFTER I explained the whole drill, and sensitivity, and cross-contam.... The food director said they wanted him to have a wonderful experience and not worry about eating.

    There's a dance that Friday night for the students, and they even wanted to know what he ate for snacks, so there would be something for him then, too...

    :)

    joanna


  20. My school district has a wellness policy that requires a minimal amount of "food reward" and parties which have to include healthy snacks like veggies and fruit, so we've not had much of this to deal with.

    But let's be realistic. Teachers have a lot to deal with and are not always in the loop with what individual parents are going to do/bring in. There are always teachers/parents/kids who just don't get it. You are asking for constant disappointment and anger if you expect otherwise -- is that what you want to model for your daughter? Control what you can -- send in a durable, sealed box of snacks for her to choose from, talk to the teacher about the exceptions that will need to be made, and hang in there. The squeaky-but-NICE wheel gets the most results (I would not have gone over the teacher's head to the assistant principal, but that's just me).


  21. I'm re-reading your post and I don't see your wife complaining, but anyway..

    Married 24 years, one celiac son and one celiac husband, dx several years ago. I have always loved to cook, and I just kept cooking, only now it's gluten-free stuff. We are not completely gluten-free; there's packaged mainstream food and bread in "safe boxes" away from the other food, but I do admit that we gave up having flour or mixes with flour in the house. It did seem to settle and make my guys sick, no matter what we tried.

    It was just never a big deal. Cooking is cooking, and as long as we eat together nobody cares what is on the plates (we have a non-celiac son too). If it's her decision to cook two meals, and she's not griping about it, let it go. Personally, I find the "victory" of creating perfect gluten-free donuts, or cookies, or pound cake, a huge culinary rush!! And such grateful clients! :)

    joanna


  22. My 14 y.o. says some people make fun of you no matter what. Some people are mean no matter what. Everyone has something wrong somehow, it's just that some you can see. And he adds, too bad it's not okay to hit people, because some people are asking for it....

    ...Whoever is working on the IEP slowly needs to be reminded every few days you are still here. The nice-but-squeaky wheel is the way to go. Go over heads. Don't fool yourself -- private schools are full of mean kids, too.

    ...We went with Good Nites, which are less diaper-y. It's no more mortifying than accidents! Have a meeting with the teacher. Get her/him on your side. Show them the pain this is causing. Work together.

    ...Give yourselves a break and do something fun, even if it's just renting a movie. Don't pity him, just love him. Tell the school if they are not willing to address the bullying problem, you will just have to contact these parents yourself. (But don't! -- it will just make them worse)

    ..For your son, you want to model strength, advocacy, tolerance, and humor. He will need all of those!

    joanna


  23. gluten-free bread is generally icky...so we stopped thinking bread = lunch. My son' s typical lunch "entrees": (his middle school allows him into the kitchen to heat things in the microwave himself; in elementary school they did it for him when he went through the line)

    cubed cheese, crackers

    quesadillas (cheese, or cheese/oregano/sauce or ham/cheddar or cheddar/apple)

    jif single-serve pb and crackers

    leftover whatever from dinner

    rice, veggies, chicken

    yogurt and carrots to dip

    pancakes

    sausage

    meatballs and sauce

    mini pizzas (made individually in muffin tins, he'll take 3 or 4)

    trail mix (gluten-free cereal, nuts, raisins or cranberries, mini choc chips)

    (My husband also likes corn thins used as 'bread" but the rest of us don't like the taste. )