
strawberrygm
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forgot to say, the bloodwork, urine test, and xray all came black clear.
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my 12 year old daughter has been gluten free for almost 4 years.
starting last monday night, she has been having serious abdominal pain.
at first we thought she had pulled a muscle in jazz class that afternoon, so we tried ibuprofin, hot showers, heating pad. tuesday she went to school but was in pain. wednesday she was unable to go to school, i took her to a local fast pace clinic. they ran a urinalisis, bloodwork, and an xray. by thursday still no relief, i took her to her pediatrician, who ordered an ultrasound and told her to get on a low fat diet on top of her gluten free diet. friday was no school, that night she tried to go to a bday party for a classmate, made it 30 minutes and i had to go get her. saturday she and 2 friends went to eat with her bio father, she laid down in the vehicle most of the ride (45 min each way) and left the table a few times during the meal. sunday she made it though church and lunch but then had to lay down most of the afternoon. monday was also unable to go to school. today, tuesday, was finally the day for the ultrasound. it was completed by 9 am. it is 3:15pm right now. i have called the doc office at 1130 and the nurse said she would call the hospital to try to get results. i have not heard back so i called back at 3. if no one has called me by 4, i am going to the office to get them to get me some results, now. we made her go to school today after the ultrasound, took her in around 11am. let her wear a therma-care heat wrap to try to help with the pain. she made it till around 2pm and came home in tears. is now back in the bed.
the pain is constant, yet gets worse whenever she eats or drinks anything. this tells me its not an accidental glutening (as of course everyone wants to assume first, myself included) because the pain worsens after eating just an apple or just a drink of tea or sprite.
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My youngest child is almost 6 months old. He is exclusively breastfed, only this week have I offered him a few bites of baby food. However his entire life his gas has been extremely nasty, and it is getting worse. I mean almost inhuman! No kidding! His bowel movements are normal for breastfed babies, and they are foul, but they have absolutely nothing on his gas! Should this raise my concern for him also having celiac?
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Thanks strawberrygm. When I first tried to send her lunches, I bought a laptop lunchbox ($$$'s) that she occasionally left at school, so I bought extra inserts (more $$$'s) and then tried to figure out lunch. Since we were dealing with some self-esteem issues (I guess that would be the word), I felt a lot of pressure to make her lunches look really 'cool'. Since I was also dealing with a new diagnosis, I didn't know how to cook well yet. The school decided that her teacher would be in charge of warming up her lunch and sometimes dishes were warped in the microwave or she forgot to put cheese on top (not blaming the teacher, I'm sure she was trying her best but this was kindergarten and there were lots of wiggling, giggling kids ready to go to lunch).
Eventually, the school started cooking her lunch after I found out that she would eat some of the lunch I sent, and then go through the line and ask which items she could eat and eat that as well (or instead). When we moved here, they already had worked with a child with celiac so they knew to buy the meat, veggies and fruit fresh. A typical meal would be a grilled chicken breast (with some gluten-free sauce on the side), rice, salad, steamed veggie and whatever fruit was cheap (frequently kiwi).
This year, they have had some rule changes about what they can serve and they are trying to make everything mesh together and have accidentally glutened her a couple of times. So, I'm debating. After next year, she moves to the middle school and I'm already hearing that the lunchroom is a nightmare - food tastes bad (one parent told me that she personally saw kids who had raw chicken nuggets and the lunchroom manager wouldn't re-cook or give them more), portions are small with no seconds (the other schools allow seconds depending on what they have extra) and the staff is rude. The other celiac kid is at that school now and his mother is about to start sending his lunches and has been vocal about the food being really bad. I don't mind fighting for things, but I'm not sure that this is worth the fight. I'll see how bad it is myself soon as my oldest is going to that school next year (she has autism with a lot of food sensitivities so the lunchroom is an important place for her as well).
My celiac daughter is in 3rd grade this year, but could definitely take care of heating up her lunch herself. I'm sure we're going to end up there at some point. Thanks again.
you are very welcome!! i hope this helps you some!! =)
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my daughter is 12, and is just the opposite. at home i think she has add, but her 5th and 6th grade teachers seen no sign of it at school. i have just sent a letter asking her 7th grade teachers if they are seeing any signs of it now, as her grades have slipped this past 9 weeks and she had a couple of missing assignments. not trying to make an excuse for her if she is just being lazy or irresponsible, but if there is an issue then i want to get her help for it. she was diagnosed summer before 5th grade.
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i noticed you mentioned it being hard and expensive to send gluten free lunches to school. i wanted to share with you all what i do.
since my daughter was the first one and only one in her school with celiac, noone knew anything about it. we agreed that she should not have to eat a cold lunch every day since she wasnt bringing her lunch based on preference but health. she has access to a refrigerator and microwave each day. since she isnt overly sensitive i didnt send her a personal microwave, i would if needed. she usually takes leftovers from meals we have had at home and warms them up for her lunch. this way she gets a good, hot meal, and its cheaper than the prepackaged meals. she was dx summer before 5th grade, so we did this at her elem school and now at middle school. her 5th grade year and first half of her 6th grade year her teachers she had before lunch would even let her leave class a few minutes early to warm her meal.
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does your school have a program for students with chronic diseases?
ours is starting this this semester. i just got a letter and form about it yesterday. i called the county wide nurse director and she said they would occasionally pull my daughter out during her related arts (not academic) class to discuss her disease (celiac) and ways to cope, things to eat and to stay away from, etc.
it is not a required program, but i figured what the heck, its free, give it a try and see if it helps. as long as the info is up to date and correct, it shouldnt hurt.
has anyone else's school offered this? what is your experience with it?
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With help on breastfeeding and increasing your milk supply, go to kellymom dot com. It is a great forum for moms a d breastfeeding. I would think that keeping baby on just breastmilk vs breastmilk and formula would help settle tummy.
Good luck, i know its so hard and frustrating. Especially with all the differing info and hard to dx little ones, it makes me feel helpless on their health at times.
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hello all!
i am seeking advice, thoughts, information, research, anything.
i live in a small town, but would love to open a little shop in which i sell gluten free food items that kroger and walmart dont carry, and serve meals. not a huge restaurant, just a little place with like 6 tables for 4. different menu daily.
what are your thoughts on this?
also, where would i look for grants?
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the following are some products my daughter has been eating with no problems.
however, a lady we know has celiac and says she should not be eating these products at all.
i dont see anything on the ingredients list, but am i missing something?
kellogs corn flakes
kellogs rice crispies
random brands of hot dogs (we have swapped to only nathans or hebrew national)
any fritos or lays products
bologna
this lady wasnt diagnosed till in her 50's, has dh, diabetic, and several other issues. she has been gluten free 13 years now. i know she is trying to help us.
i just wonder if since lacee isnt having problems with these foods, if maybe our friends information is outdated, or if she is more sensitive than lacee, or if she only eats specialty labeled gluten-free products.
thanks in advance for all your help!!
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well, i could go ahead and swap the home over, and then if it turns up that i need extra stuff or just cant manage the cravings, i could always eat those things outside of the home.
thank you all so much for the advice so far. keep it coming! i really appreciate it!!
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i should add that i have never had trouble getting pregnant, i havent been tested for celiac. my daughter has it and my sons show signs. i am hoping that by swapping the whole house over, it will of course banish any chance of CC at home and that my boys will react positively to the change, as well as hubby and myself.
i am going to ask my doc to order a celiac panel on me, just to be sure.
my pregnancies have been fairly normal, i suppose.
1st i gained 64 lbs, had a 5lb 12 oz baby after emergency csection, cord wrapped around her neck and her heart had stopped.
2nd i gained 28 lbs, he weighed 7lb 7oz scheduled csection.
3rd i gained even less, he weighed 8lbs 7oz, scheduled csection, gestational diabetes went away at birth.
i am still over weight, extremely, so i am sure i will be watching my sugar like crazy again. going gluten free could definately help in that aspect (cutting way back on the carbs that is, right).
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hello!!
i have been planning on switching my house to completely gluten free on feb 1st for a couple months now.
found out last night i am pregnant. assuming 6-8weeks along. going to doc in the morning.
will it be ok to go ahead and swap during the pregnancy?
have any of you done this?
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i know almost nothing about the 504 plan.
i would love to hear all the details about them, the pros and cons, from every age group.....
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thank you all so much for your responses!!!
my hubby and i went today and spoke with the principal. he was exceptionally nice.
yesterday, the teacher in question, and 2 or 3 others, watched as my daughter left the class with the others, stopped at a friends locker, then at her locker, then to the bathroom, then down to the fridge and grabbed part of her meal. a teacher asked her then if she was going to heat up her meal. she told him she didnt have time. then she went and got in the very back of the line (where else, lol) and got a baked potato.
so, it sounds like she does have time, barely, if she uses her time wisely. apparantly she is not.
ugh!
principal said we will continue to watch her for a while, see how the timing goes, see if warming her meal makes her not have enough lunch time, etc. and if it turns out that she really does have to have the extra 5 minutes, we will make sure it happens.
he also said that the next 9 weeks when she goes to a different class before lunch, that the teacher in that class is very, "oooh, you need to leave? ok..5 minutes, why not 10?" very easy going.
hubby and i waited until daughter was about to change classes, and we talked to her in the halls, just us. told her that it appeared she hadnt used her time wisely, and to please do so. make it a point to warm her lunch up. if it makes her late for next class, we will address it then. explained to her that the principal was super nice and very willing to work with us, but she also has to do her part.
sooooo, we'll see where it goes from here.
i'm not trying to be difficult, i just want her to have what she medically needs.
again, thank you all for your comments, all of them. its the lovely part about forums such as these, you get to see things from a completely different persepective. that helps us all to learn and grow.
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I wanted to add that I also called the county school nutritionist yesterday to see if I should get a letter from her confirming our verbal agreement, but she said that since the cafeteria staff was not involved in the storage or prep of her meals, that it wasn't under her radar. It is just the principal and teachers involved at this point.
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I am in my first issue with the school regarding my daughter and celiac, and am looking forward to your advice on this situation.
Last school year was our first to deal with this, and rather than have the school supply her with meals, I worked out a system that worked wonderful for myself, my daughter, her teachers, and was verbally approved with the county school nutritionist.
I sent her meals to school with her, and she was allowed access to the teachers fridge and microwave. She was excused from class 5 min prior to the end of class to prepare her meal. This plan carried over with us into middle school this school year, and all last fall. Now she is in a different class before lunch for 9 weeks. This current teacher yesterday refused to allow her to leave early due to a guest speaker in the classroom. I called the school after school had dismissed and talked with the teacher. She admitted to not allowing her to leave, and said that this guest speaker would be in the class 2 days a week and that she would not allow my daughter to leave on the days he was there. I was shocked. I wanted to go to the school first thing this morning and have a meeting with the principal, but my hubby convinced me to wait, to give her time for it to happen more than once, so we would have more of a leg to stand on with our complaint.
(they do serve salad at the school, so my daughter was able to eat, but who wants a salad every day? especially when its cold!?)
Again today, my daughter asked at the beginning of class to go early today, and was told no. The guest speaker wasnt even there today, he was home sick with the stomach virus!!!!
Teacher claims that they already leave 2-5 minutes earlier than the class is scheduled to be in the lunch lines, so she thinks my daughter should have time then. During those 2-5 minutes the students go across the school, put their books in their lockers, go to the restroom, wash hands, and then go straight into the lunch lines. My daughter says they are not standing in the hall for any extra time.
She cannot be late after lunch, she goes directly to locker, restroom, and class. As well as the fact that another group is coming in to lunch.
I have never had an issue with the schools, have never had to go to the school for any type of complaints at all. My daughter has never been in trouble.
I have printed out this awesome sheet explaining cross contamination issues in shared kitchens: Open Original Shared Link
I have a short letter from the doc confirming her diagnosis.
Hubby wants to wait until Monday to go speak to the principal. I dont see what 1 more day is gonna matter, but I will if I have to because I need him there to keep me calm.
We only have to deal with this teacher for 9 weeks, this year, I am not sure if she will have her again in the next 2 years at this school or not. But we cannot let them run over us now, or it will never stop.
We do not have a 504 in place.
If the principal refuses to force the teacher to allow my daughter the extra time to prepare her meals (i do not think she should have to eat a cold meal everyday when she is taking her lunch due to health reasons, not a "school food is yucky" preference), then I will have to have them prepare her meals, and I will not cut any slack in her having her own dedicated area.
Our county is in the process of building 2 new elementary schools, 1 of which my boys will attend within the next 2 years, and in 3 years my daughter will move to the high school, so we are talking about the school board having to build at least 3 dedicated gluten-free safe kitchens simply because this teacher and principal want to be hard headed.
I welcome your advice on this issue~!!!
Thank you so much!!!
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Last year, while still in elementary school, we arranged a plan that I felt was the easiest and safest for all involved. I would send my daughters meals, she would have access to her teachers fridge and microwave. She would be allowed to get up from class 5 min early to prepare her meal.
When entering middle school this fall, we made the same arrangement. She was in band for a few weeks, but didnt like it, so she was swapped to PE. The leaving early plan worked wonderful. Now this semester she is in Health class prior to her lunch block. Yesterday her Health teacher would not allow her to leave early to warm up her lunch. She gave the reason was that they had a guest speaker in the class and did not want her leaving to interrupt him. This guest speaker is in this class 2 days a week every week!
I called the teacher after school, and she said that she would not let her leave early those 2 days, but the other 3 would be fine. She claims my daughter should still have time to prepare her meal.
I have subbed in this school, I know, and my daughter knows, that she will not in fact have time to get her items put in her locker, get back to the fridge, prepare her meal, find a seat, go back and get her drink, utensils, etc and then eat. She wont be able to stay late in lunch because she has a class right after lunch, plus another lunch group is coming in.
We do not have a 504 in place.
We have sent daughter with her lunch to be heated again today, to see what happens. Guest speaker is there on wed and thurs, so we are expecting her to be turned down again, giving us more leverage when we speak to the principal.
Salads are served in the lunch room, so she was able to eat a small meal, but the salads are not large, thats all she can have if not allowed to her own foods, and its cold!
I am anxious to hear your advice.....
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I am not Catholic, and know hardly anything about the Catholic beliefs, so please bear with me. I mean absolutely NO DISRESPECT when I say anything. It is so sad for me to understand that being Catholic is so hard for celiacs. Its heartbreaking! I don't see how a priest can forbid you from using a cracker that is gluten free and safe for you. Especially if you add in the option of placing it in a plastic bag and then it is placed up front with the others so that it can be prayed over or blessed if thats whats needed. Why does he think he can try to guilt you into taking something that is poison to your body? It seems to me that people unwilling to work to make sure you can have a safe healthy form of communion is not concerned with you or your needs. I would think they would be proud of the fact that you take communion and your faith seriously enough to want to find that gluten free version rather than simply throw in the towel so to speak and not care that you dont take communion.
In our church, the cracker is passed down the pews and each person who has been baptised breaks a piece and passes it. Then the grape juice (wine) is passed in a tray containing individual cups.
My daughter is not yet baptised, but as soon as we found out she was celiac, I went to the pastor and asked him what we needed to do. For us we will simply have the gluten free communion wafer with us and take it at the appropriate time.
Again, please forgive me if I have stated anything too harshly, I mean no disrespect at all. It is my belief that your faith should always be placed in God, not in any man (or woman). We humans will always dissappoint each other. God understands you have celiac, and all the details that come along with that. He is pleased with the fact that you care enough about this issue to research it and try to do what you feel is right between you and him.
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i am also interested in hearing the answers to this, as my 2 yr old is getting unexplained diaper rashes and my 4 yr old has been breaking out on his face. their older sister has celiac, but no skin issues thankfully. of course once one child or family member has celiac, its gonna make me think everything they get is related.. =)
we live in podunk as well, so getting diagnosed isnt easy here either.
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i agree, the fruit and veggie trays, the deli trays, and the tacos are all great ideas. you can even buy fritos or any kind of corn chips instead of taco shells and do what we call a "taco pile on". you just pile all the toppings on the chips in your bowl or plate.
i have also just started making bacon wrapped hot dogs. you take hot dogs, cut them into thirds. cut bacon and wrap it around the dog. fill a baking sheet full of these. cover with brown sugar. stick toothpicks in them and bake on 350 about an hour. they are delish!! lacee's friends beg me to make these for them!
good luck and have fun!!!
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first off, i want to second the praises everyone is sending your daughter! she is being very responsible standing up for herself. i completley understand how hard this is for her, my daughter was diagnosed the summer before 5th grade, so we have been right there!
this thought kept popping in my head....
if this teacher is so sure that baking is an irreplacable part of her teaching that she simply cannot part with, then her entire classroom kitchen must be gluten free. not just a substitute for your daughter, but everything that everyone has must be gluten free. it nixes the chance of cross contamination, it nixes the worry that your daughter will be left out, it teaches the teacher and the children about food allergies. she must give you the money to go out and purchase the items she needs for the baking class, or at the very least let you approve all items before they ever hit the classroom. if another child in the classroom has a nut allergy, or soy allergy, or any allergy, then all items must also meet those requirements as well.
yes, i realize that this isnt a "real world" suggestion. but since she doesnt seem to live in the real world, maybe this will work in her world.
i also wonder after a month of purchasing all allergen safe foods for the entire class how her pocketbook will feel and if she keeps it up??
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my daughter has been gluten free for a year and a half. she has seen remarkable progress, yet there are still issues i would like to see more improvement on. we try to avoid cross contamination issues, but it is soo very hard in a home setting, with young children who simply do not understand.
my 4.5 year old is very hyper and emotional, much more emotional than my other children. his face has recently began breaking out with either excema or possibly DH.
my 2 year old has no tonsils, no adenoids, tubes in his ears, takes allergy meds daily, has been pulled from daycare to stay home in hopes to improve his snotty nose issues, and still isnt getting much better. he has developed, not diarreha, but more formed yet still frequent bathroom moves and diaper rash.
i struggle with depression and anxiety, stomach pain, fatigue, random arm and/or leg pain, sinus issues.
my hubby struggles with horrible gas and toxic bathroom moves (ha!), sleeplessness, joint pain, anxiety, he has the flat bottom.
the reason we are waiting until february is part financial and because we are hosting 19+ teen girls in our home this weekend for a church youth conference. plus i think it will be easier to track any changes in our health if we are on a monthly schedule.
i have told my hubby we will do this as a 6 month trial to see how it goes. he is not excited, but i guess he knows me well enough to know that no matter how much he balks, if i have made my mind up to something, its gonna happen. so he just makes that "here she goes again" face whenever i mention it. i told him he could eat whatever he wants outside of the home, but for 6 months we are not bringing any gluten into this home at all.
i am so very excited!! i cant wait to see if it helps my children!!
yes, i am sure i am gonna miss pizza hut and subway and such. yet, if my daughter has been gluten free then there is no reason i cant suck it up and deal with it. and if it helps my children it is all worth it. and if it helps me and hubby then thats just icing on the cake!
anyone have any advice on swapping the family over? i guess we will go gluten crazy these last few weeks trying to get rid of what we have here, and then give away whatever is left. =)
Spastic Colon?
in Parents, Friends and Loved Ones of Celiacs
Posted
I dont get to post here very often, as life is crazy busy for us.
However I would really appreciate your thoughts on this.
In a follow-up to the post titled "what could this be?"
My daughter was suspected yesterday by ped gastro's at vanderbilt childrens ER in nashville as having spastic colon.
What is your thoughts and experiences with this?
Does this relate to celiac and how?
What are some ways to help ease the pain of this? She was given an rx for levisin, and they recommended probiotics such as activia yogurt.
Thank you in advance for your help!