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BemLmom3

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  1. We always do this and Mimi bought daughter a special "dora" lunch bag that she carries her meals in. We have been doing that for so long, she just thinks it is normal :) I also save some "special" foods that she really enjoys for eating out times. And I really save those items for times like these. I know at first it is sad and hard but the longer you do the diet the more 'normal" it gets, hang in there!

    I love this idea! I think this is what we will do from now on. Even if a restraunt is accomadating to the best of their ability, I still worry about cross contamination without preparing it myself.

  2. Hi all

    Thanks for reading. My daughter is 5.5 yrs old, her story is in my siggy. I think I do a good job of keeping gluten out of her diet except of a few times I knew she was cc. Her symptoms have always varied from moods, foggy/spacy, failure to thrive from 2.5yr to 3.5yrs, vomiting, but mostly chronic constipation. Even with her gluten-free/CF diet she takes daily mirilax, then with the mirilax if she gets cc she gets backed up. Last back up from cc she had a huge belly, looked preggers! After I did a "clean out" with mirilax her tummy went right back down. But now here we are a couple weeks later and she is not going and tummy getting big. Last normal poop was Sat. Sun she told me there was a little blood on the tp after she wipes, which always means constipation for her. Then yesterday I went with her to see if she went poop all day. Nope, none.

    I fear I need to take more out of her diet. Corn maybe, soy? But gosh, then she really has nothing to eat! Her 2 brother's eat regular foods, so it makes it hard. I am VERY particular about all her stuff is separate, even utensils. She has her own eating area. She plays alot in her room where no one eats. And she has never been a child to put toys in her mouth. So you see, I think I am doing pretty good with the gluten-free/CF part, yet she still has to take mirilax? The gastro says it is ok to take daily, but it seems crazy to me to be on the diet and still HAVE to take a med for constipation?

    Her is her basic diet, and how she feels about it:

    Fruits, she loves most all, raisens lots

    Veg, carrot, brocc, pea, and corn

    Meats, tuna(starkist reg or wally brand) ground hamburger, bells and evans gluten-free nuggets, she likes these

    grains, rice and the De Boles rice spaghetti, I make her pancakes from any of the mixes that say gluten-free(bob red mill) and Lundeburg(sp?) rice cakes, the honey nut

    aunt B's honey bbq sauce or muir glen ketchup in rice and pasta or she hates those :)

    she loves Jiff pb and honey on rice cake or the jelly that says gluten-free

    Now for snack foods:dora cereal, rice chex, lots of frito's, cookies I make from bob red mills flour and mckormick vanilla

    she drinks OJ with calcium and water mostly

    Thats mostly her diet

    What do you all think? I think of this place as the experts so I highly value any opinions to help my little girl's tummy. Oh and the constipation is really the only symptom that has not improved. She grew like a weed once we made the diet change!


  3. OMG talk about overwhelming! Thanks for the help and suggestions, guys. Okay so the gluten-free/CF part of her diet has been since the end of Nov 2007, saw immediate diet response then. GI symptoms, behavior, sleep and dark circles all improved very quickly. A couple months later the symptoms started to return, although I think she only really got a break from the hard big, floaty poops for a couple weeks. Thats when we began to use milk of mag. And let me just say that I am VERY careful but my house is not gluten-free. She has her own pots, pans, shelves for food, dog and cat food is changed, art stuff ect ect. There has been a few CC mishaps when hubby has prepared her food.... Oh and one more thing, since Nov she has gained 2 pounds and half an inch after not growing for a year!

    So end of Jan I took out soy, did not notice a difference and her poops still hard, big, and floaty(although she goes every day whereas before she went every 3 days). So 3 weeks later soy back in but now I notice tummy aches and behavior are back, they were gone with soy gone. But the hard, big, poos just do not seem to go, unless she takes Mirilax(dr said to use). Can this be good to keep using? So I am seeing that I may also need to remove corn? OMG it is in everything too!!! Yikes. I guess the snack foods and cereal box foods are the biggest issues, especially for a 4yr old. I will try anything at this point because the poops cause her to bleed too........

    Thanks guys!!!


  4. I had removed all soy from daughters diet and did not see a difference in her constipation that will not go away. Actually she is going everyday now, which is an improvement from before she went gluten-free/CF, but they are still really big, hard and float?????? Well I put soy back in her diet and now the tummy aches and bad moods have definitely returned. So my question is, I am not sure what actual soy ingredients to remove. Soybean oil, soy lecithin, soy flour, vegetable oil, soybeans, all of it??? It is so frustrating because it REALLY limits her. She loves the envirokidz stuff, all has soy. She loves the Vans waffles....soy. Get the message? Also why is she still haveing the hard big poops even when I took soy away too? Or does it take more than 3 weeks?

    Thanks for any info!!! And I will do whatever is needed for her to feel better, it is just so darn hard sometimes....


  5. So she gained 2lbs and 1/2 inch since Nov. Well now that I removed soy also, she now is back to no tummy hurting complaints, behav fine, and pooping everyday(she was horribly constipated again until soy was removed). But she seems to be down a pound! WTH? Maybe she was so constipated she was heavier? She definitely does not have the bloated belly either. Any suggestions? She is eating ok and I am trying to get lots of calories, but it is harder now with the removal of soy.....


  6. Hi I HS my 3 children, ages 7,4, and almost 3yr olds. I just started last year. At first it is a good idea to look at your state's HSing laws. http://www.nhen.org/ you can look your state up there and here are a few other links that might be helpful. I now have to take soy out of her diet to see if her symptoms go away again, and I cannot imagine how hard it is for those families with kids in school. She seems to be so sensitive too, any little crumb ect, brings on a ton of symptoms.

    http://www.thehomeschoolmom.com/newtohomeschooling/

    http://homeschooldiner.com/guide/intro/approaches.html

    Sharon

    Mom of 3 HS'd kids

    my 4yr old adopted daughter has celiac disease dx with pediatrician

    and "probable celiac disease" from GI gluten-free/CF since Nov 07

    gluten-free/CF/SF starting today(except I messed up and gave her popcorn with her smart bal light on it <_< )


  7. So my daughter has been gluten-free/CF since late Nov. She just turned 4yrs old, has been dx celiac disease by regular Ped and "possible celiac" by GI(already on gluten-free and chose not to challenge for tests but she does have a great pos response to diet and DQ2 gene)

    So right when we switch diet over she was doing beautifully. Now we are starting to see some symptoms return. Could have been gluten once or twice by eating out, but other than that we have been VERY careful. I am now afraid she might be having reaction to soy. She is complaining of tummy hurting and constipation and VERY large poops are back. :(

    I am worried this will leave very little to eat. The envirokidz cereal and animal crackers and almond crackers she loves and I see soybean in them. Do I need to remove those or just soy milks and soy cheeses? The almond milk has soy lecticin. She likes rice milk which is great but I need some cereal and snack ideas that are free of soy too??? Any help please..........I just want my little girl to feel good again!

    Thanks

    Sharon


  8. gets better? My 4yr old has battled with it her whole life. It seemed to have gotten better right after she went totally gluten-free/CF in Nov. But now she seems to be having issues with it again. Also very large/ toilet stopping ones. Blood when wiping, the works.

    So does this mean she is being glutened(she was tonight but not most days that I am aware of)or can it go back and forth for awhile? I have done everything as far as food, kitchen utensils ect, dog food to iams, soaps, t.paste. The rest of the family still eats gluten but I am being so careful, I think :huh: She even eats in the highchair so it is her own space. What do you all think?

    Sharon

    Mom of 3 HS'd kids

    4yr old adoptive daughter, pos diet responce and DQ 2, gluten-free/CF since Nov 07


  9. where it is. My daughter is 4 and the last time we ate at Chili's she got the hamb patty and manderines. She was fine and they do have a gluten-free menu.

    Tonight, same Chili's and same dinner, except we did take out and she complained of a tummy ache almost immediately. She holds her tummy and was crying right before bed.....This really does stink some days. I feel bad for her when everyone orders from the menu and she gets food from my bag. But then her being in pain is alot worse!

    Sharon

    mom of 3 HS'd kids

    4yr old adopted daughter positive diet response and DQ2


  10. What behavioral symptoms do you see in your child with Celiac?

    My son has always become irritable with exposure to gluten, but with this last exposure it has been horrible! He is irritable, defient, mean, whinny, tired but won't sleep. I know he's 2, but he is a very sweet cooperative boy most of the time, this is just awful.

    Since we haven't had this kind of reaction in the past I am wondering how other kids react behaviorally.

    Describes my almost 4yr old to a tee when she has gluten. It is like a different person!


  11. My two year old had many symptoms of Celiacs but it took forever to force the drs to do a biopsy. It came back inconclusive. They also tested her for the gene's then. She has DQ2. After much denial and continuing issues, she was made gluten-free/CF in August. She is much better. We also do not have a confirmed biopsy. But she has the gene and reacts to gluten-free. Our family has many food allergies. I would not let your Dr try to put her back on gluten just for a confirmation. You already have it. :D She has immediate reactions to gluten. That is all you need. My Dr finally agreed she is a celiac when my daughter started to grow and gain weight and has a serious reaction to dairy and gluten.

    As for your sippy cup issue, can you color code the kids drink cups? Or maybe son gets sippy cups and daughter gets straw cups? Depending on what sippy cups you are using, they are SOOOO hard to get 100% clean. BTW, I only know of a few drinks that would contain gluten too...hmm. Maybe something else got her? Or make sure all drinks in house are gluten free.

    My youngest and I are also extremely sensitive. I react to contact, so I must have an allergy too. If your daughter keeps having reactions, go back and recheck everything, maybe something has changed.

    BTW, my oldest (5 yrs) was causing so many problems leaving gluten and dairy around where her sister could grab it or be contaminated by it (several incidents) that I finally removed all dairy from the house (already nut free) and established strict rules. Food only eaten at the table and assigned seats really helped. No food in bedrooms. Dishes are put into sink immediately and kids wash hands and faces before and after eating. Strict, but it keeps everyone from getting sick. Certain pots and utensils are only used for gluten meals like pasta. All that made a world of difference for us.

    Hope that helped some.

    It did help lots, thanks!!! I think what happens with the cup is my son eats his gluten, then takes a drink and back washes into the cup and those tiny holes...I bought her some pink cups, those are hers ;)

    Also, the rest of us are not gluten-free/CF at this time, only she is(I know it would be easier) but what about washing dishes in the dishwasher together? If her bowl has some scratches will it catch the gluten being washed from other dishes?


  12. my 4yr old daughter is the one that is 27lbs and already on the diet before testing. I opted not to test(other than diet elimination) at this time. She is doing VERY well but I am still learning and when she is glutened, even by the smallest amount, she and I suffer big time! She will complain of tummy hurting and her behavior/rages are awful. Anyway the GI decided to test her for the DQ2 gene since we could not do the biopsy at this time. She carries the gene. The nurse calls yesterday and says it is highly likely she has celiac disease. Of course they can not confirm it without the biopsy. I think I have my confirmation, I really was hoping she did not carry the gene so that maybe there was hope of her *growing* out of the intolerance. She really is soooo sensitive, she just has to look at gluten....

    I have replaced all her kitchen stuff, changed toothpaste and soaps. I bought sippy cups yesterday, she was glutened by her brother's WASHED sippy cup.... Where else is hidden gluten? Any tips would be great! Also, what percentage of people have DQ2 but not celiac disease? Is that written anywhere? Thanks!


  13. Hi there

    My almost 4yr old daughter has not been officially diagnosed, she was gluten-free prior to biopsy and I will not put her on challenge to do it. I *know* she is at least gluten intolerant, possibly celiac. The GI did run the panel which I realized will come back as a false neg and she is also checking for DQ2 gene. First question, how long does it take for those results?

    So I realized my daughter was being glutenized from tooth paste and lotion, took loss of sleep and behavior and alot of reading, I have fixed that. Last night I made her rice pasta and gluten-free sauce. Her regular italian dish. Almost immediately after she ate she was holding her belly saying her stomach hurt. It was like, uh oh... Well today she woke with puffy eyes, her behavior has been awful and she has been doubled over in floor with another tummy ache! UGH! I need a bubble! We went to a friends house yesterday that I am sure had gluten finger prints on toys but I washed her hands before she ate. And she really does not put fingers/toys in mouth while playing. So did she get it there or was it me who poisoned her? I realized I cooked the pasta in a pot that had scratches and I have used for regular pasta, same with the strainer......So can these things really hold gluten even when washed? I need the poor man gluten-free diet and instructions. I just cannot afford to buy all new kitchen stuff, grrrr. Help anyone.

    Oh also she eats alot of hamburger patty, can gluten be in meat from the cow eating it?

    Thanks!


  14. I need some advice please!!!! First off, how long for RAST results to come back and how accurate are they? Second, my almost 4 yr old daughter had her appt with Gastro today. They are doing RAST and claim she needs the biopsy and blood tests after a month long gluten challenge, she has been strictly gluten-free for 3 weeks and she should of gained something in 3 weeks?????? Okay so if I already know she has a gluten intolerance whats the point of the tests and month long torture. Also are they even accurate in a 4yr old???? The most important issue right now is her weight gain. Once she went gluten-free all other symptoms almost immediately went away. How long before I see a true wight gain? Thanks for any help, I as a mom want to do whats best for my kid, like everyone else here.

    Sharon


  15. Well we went in to get Emily's test results this morning. The ped said all was normal, this included the blood screen for Celiac. He also tested liver, kidney's ect. I did not expect the celiac disease to be anything other than normal seeing how she was not eating much gluten at all when tested and the fact that I have read that the results are inaccurate for kids her age. The Dr did not mention any of that....I did tell him that she is on a strict gluten-free diet and the vomiting and D have stopped. He said "good than do not feed her gluten" DUH! She did lose 7 more ounces though in one week. Whats up with that? She has been gluten-free for 5 days and she is still losing? He wants me to take her to the gastrioenterologist, but commented that there was not much else to test for. I do not want to do a bunch more testing when I know for sure she has a gluten intolerance, from the elimination and then reintroducing diet. She is 3.10 yrs and 27lbs, 37 inches. I worry though that she is still losing weight.... I guess I will call and make the appt, maybe by the time she gets in she will have healed some and gained a pound and then I can just cancel it? I will NOT do gluten for them to run the tests again, I do not need a diagnosis to tell me what I already know and hurt my daughter more in the process!

    Thanks

    Sharon


  16. Hi

    I am sooo glad I found this site! I am sure I will learn so much here. I do have a few questions I hope I can get some help with. I will try to make this short as I can. My 3yr 10 month old adopted daughter has Fetal alcohol syndrome mad.gif I decided in March of this year to try the Gluten-free Casein-free diet, mainly due to behavior and FAS symptoms. Within 2 weeks I saw a big difference. I was not too strict but did pretty well. Around May her dev ped said if I really wanted to "test" the validitity of the diet I could take her off for a week and then I would know for sure. So I did, a week later was okay but after 2 weeks behavior was awful and she had bad dark circles under her eyes. I also should mention she has always battled constipation and when she does go it is huge and very smelly. A nd she has never slept well! So back to the diet we went but I had introduced oats a month later and her behavior(this is what I was basing everything on then)seemed ok with it. Well then the beginning of this month we went to a birthday party and mom guilt kicked in, I decided to try and reintroduce wheat, chicken nuggets. The next morning her behavior was off but I was determined all would be ok. So I continued with the nuggets, regular pasta and regular pretzles. After 7 days I realized it was not fair to her, again dark circles and behavior downhill and sleep worse. The day after, no more wheat, that night she threw up everywhere. I thought it was a virus but it was very sporatic and no one else got it. Would it take that long after we started wheat for it to be that to make her physically sick? She threw up, once a day every other for 8 days. At that time I removed oatmeal, and she has not gotten sick since. I have been following strict gluten-free since her last vomit and all seems well. I took her in to the Dr, turns out she is also not growing. Actually in 11 months she lost a pound and only grew 1 inch. She has not had vomiting in the past and has been an ok eater, seems to get enough calories for her age ect. The Dr dx FTT and is doing testing, he said she was a good candidate for Celiac and is doing the blood tests. I worry the results will not be accurate due to being mainly gluten-free again. It had been 6 days since she had wheat. Would that still be in her system for accurate results? Just wondering if this all sounds indeed like Celiac? Will the tests be accurate? Obviously she has a gluten sensitivity but does she have Celiac? And why is she not growing even when we have mainly been doing gluten-free diet? Any info is greatly appreciated!!!!

    Thank you


  17. Hi

    I am sooo glad I found this site! I am sure I will learn so much here. I do have a few questions I hope I can get some help with. I will try to make this short as I can. My 3yr 10 month old adopted daughter has Fetal alcohol syndrome :angry: I decided in March of this year to try the Gluten-free Casein-free diet, mainly due to behavior and FAS symptoms. Within 2 weeks I saw a big difference. I was not too strict but did pretty well. Around May her dev ped said if I really wanted to "test" the validitity of the diet I could take her off for a week and then I would know for sure. So I did, a week later was okay but after 2 weeks behavior was awful and she had bad dark circles under her eyes. I also should mention she has always battled constipation and when she does go it is huge and very smelly. So back to the diet we went but I had introduced oats a month later and her behavior(this is what I was basing everything on then)seemed ok with it. Well then the beginning of this month we went to a birthday party and mom guilt kicked in, I decided to try and reintroduce wheat, chicken nuggets. The next morning her behavior was off but I was determined all would be ok. So I continued with the nuggets, regular pasta and regular pretzles. After 9 days I realized it was not fair to her, again dark circles and behavior downhill and sleep worse. The day after, no more wheat, that night she threw up everywhere. I thought it was a virus but it was very sporatic and no one else got it. Would it take that long after we started wheat for it to be that to make her physically sick? She threw up, once a day every other for 5 days. I took her in to the Dr, turns out she is also not growing. Actually in 11 months she lost a pound and only grew 1 inch. She has not had vomiting in the past and has been an ok eater, seems to get enough calories for her age ect. The Dr dx FTT and is doing testing, he said she was a good candidate for Celiacs and is doing the blood tests. I worry the results will not be accurate due to being mainly gluten-free again. It had been 6 days since she had wheat. Would that still be in her system for accurate results? She is still eating oats but after this morning I will probably remove those too. She was fine yesterday and this am. She ate oatmeal for breakfast and then the rest of the day acted as if her tummy hurt. By dinner she was looking bad and had a diarrhea blow out. Was doubled over with pain. Just wondering if this all sounds indeed like Celiacs? Will the tests be accurate? Obviously she has a gluten sensitivity but does she have Celiacs? And why is she not growing even when we have mainly been doing gluten-free diet? Any info is greatly appreciated!!!!

    Thank you

    Sharon