
stanleymonkey
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they can't give us reason for her swelling, we go back to gastro at hospital in march, to seethe doc who told us in no uncertain terms she has no gluten issue(which she definitely does), and shards and hugs would solve all her issues
our family doc and nurse had a feel around and asked if she would respond to pain in the area, we had to tell them we didn't know because we don't know what the supposed nerve damage is or where it is, they are furious that was the diagnosis she was given without investigating other causes
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birth 2.88 kg
3 months. 5.65 kg
6 months 6.74kg
9 months 7.5 kg
12 months 8.1 kg
24 months 11.9 kg
27 months 11.4
30 months 12.5
32 months 12.9
36 months 12.5
37 months 12.9
her belly measured round the belly button pre gluten free 56cm , after gluten free 44 cm
I'll try and figure out how to post pictures because the pictures say it all
her weight is kind of up and down but she has some nerve issues in her bowel, and she has a few food phobias just now, she feels better and is scared everything is going to hurt her
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okay here's a brief history hope someone who has been through all of this can help us figure out what is going on
its about my 3 yr old
anaphylactic allergies to milk and eggs
allergic to penicillin en clarifying
soy intolerant
had lots of tummy troubles, rashes, behaviour issues, joint pain
sent to gastro
gastro 1 - ran ful, celiac panel, thyroid, liver enzymes, kidney tests, all sorts of tests for inflammation etc related to crohns colitis and other IBD's and only test that came back positive was gene test, everything else okay, referred us to gastro 2 to rule out celiac ( so many autoimmune diseases in family need to know exactly is going on)
gastro 2 - positive genetics plus negative everything else means no gluten issues, hi e her zantac6 for her reflux and goodbye
we went gluten free, first few weeks were amazing, we even made our baby gluten free and this weird rash she had under her chin disappeared.
with our 3 yr old ghing s have slowly been getting bad again, alternating d and c, moods and a swelling on the right
hand side underbelly button that comes and goes.
family doc said go back to gastro 2 as he gave official diagnosis
we know she is not cross contaminated sense has anaphylactic allergies and I make everything it is not a possibility, and we know very quickly if she has had even a crumb of gluten food
any ideas?
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my little monkey had rice noodles, chicKen, roasted parsnips, kale, and hummus
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our daughter had positive gene test but everything else was negative, the GI at the children's hospital said that meant she had absolutely no issue with gluten and her tummy problems and rashes were nerve damage, we went gluten free and all her issues disappeared
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give it try, my daughter never slept, now gluten free she sleeps 11 - 12 hrs straight
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our dietician suggested chicken, skin on, and fried! and butter/margarine to everything
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if you don't want him to have milk at day care, tell them water is fine. you can make sure he gets the calcium he needs at home.
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my hubby has crohns and daughter has celiac. I've seen how miserable it makes them both, once you get rid of the bacterial overgrowth hopefully you'll be able to concentrate in eating the right things to help your hut heal. My hubby had a bowel resection at 15 and had his gallbladder removed a year ago. If you do what the gastro says and dieticians regarding diet you should feel better. When my hubby eats what's is supposed to he never gets flare ups. I know it seems like the end of the world right now, but at leastyou know now rather than 20 yrs further down the line, and you'll be able to start healing and get on with a happy healthy life
sending lots of hugs - been up so many nights with either my hubby or daughter in pain it's hard enough to watch I can't imagine going through it every day
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my 3 yr old has gluten free pomegranate granola, rice chez, hemp hearts, cranberries, raspberries, ground flax and almond milk all mixed up in a bowl
or gluten free waffle with toffutti cream cheese
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try lax a day, its active ingredient is p.e.g 3550, non addictive and a stool partner rather than laxative. When our daughter gets bad we have to do a double dose for 3 days to clear out what is backed up and then a single dose daily for at least 3 months, works lime charm with no side effects well apart from the 3 days when the whole world seems to escape from her hind quarters!
try to avoid prepackaged food for a while till your gutheals
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if she has had constipation for a while it might be worth talking to a gastro or even a paed about a bowel maintenance programme. It involved giving her p.e.g for 3 months, and things like making her go and sit on the toilet at regular times (it downs't matter if she goes or not), and a diet with fibre and water spread throughout the day. It really helped our daughter who began with constipation at 13 months. We were told the stool softners would help her poop without the muscles having to do much work, and this rest time would allow the bowels which were probably stretched out from the longtime constipation to tighten back ul an start working properly. My daughter is now 3 and recognises when she is constipated and asks for her 'bum juice'
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trust your instinct, we are now 1 month gluten free and she is a different child! We have however now her huge belly has gone discovered a lump in he belly right next to her belly button that you can see even when she is lying down, I'm hoping its a hernia from being so swollen and nothing else
back to the docs to gloat and ask to have the lump checked
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I'm a teacher and I banned sanitizer in my classroom, the over use over hand sanitizer is like the over use of antibiotics! I taught in the middle east, and most kids who had nannies were sterilized every time they touched something, crazy huh?
to the OP, I'd try cutting out all dairy, caesin can be a big issue even for people who aren't celiac. The body has a tough time breaking down the protein in milk,
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eating everything can be a symptom, when my daughter was at her worst and not absorbing much she would eat us out of house and home, even eating things she would normally turn her nose up at. We manger to get her to eat spinach and shrimp, now she is on th road to recovery she tells me she doesn't like the taste!
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our daughter needed to gain weight and is gluten dairy egg and soy free. We were told to add vegan margarine to as many foods as possible,e, fatty meats, leave the chicken skin on and let her eat it, fry it if possible.
tahini is great dip for veggies. Make smoothies with coconut milk and your favourite fruits, add a little coconut oil for extra fat.
we were also told to get her to eat something every 2 hrs, making sure she had fat and protein at least 3 times a day
another good thing is to make Chinese stock soup, full of flavour and some fat from the meat, or make congee- cook rice,the rinse and cook again in homemade stock till it turns to mush, great comfort food! Our dietician swears the confer stopped our daughter from dropping gotten growth charts
homemade rice pudding, with coconut milk
I know you are a grown ul but these ideas really helped our daughter gain and maintain get weight
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my 3 yr old does it, we have to poke her other her out of it
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our daughter has positive genes, negative on every blod test , had them taken 3 times in 8 months, but doing amazing gluten free, she still gets stomach aches and weird bm's and keeps telling me that her tummy hurts and there are bad things in her tummy, going back to gastro soon if it doesn't stop. we were told she is too young for crohns at 3 , but her dad has it so part of us wonders if it itis crohns as gluten-free helps crohns
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get in touch with the celiac foundation they can tell you, also call midmain community health clinic 604 8733666. The nurse Amra is awesome, tell them you have celiac and need a doctor, or even ask to see Amra and get her to tell you the best doc, she found us the best pediatricians in the whole of b.c who in turn found us the best gastro
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check the substitutes are dairy free and gluten free, also soy may be an issue if you have dairy issues
rice milk is good, if you use it for baking you may need to add a tiny bit more fat to the recipe as there is a lot less in rice milk than regular dairy
our daughter is celiac and has anaphylaxis towards milk in any form, we use silk soy and almond milk and have never had an issue
so delicious coconut milk beverage is gluten and dairy free and very tasty, our daughter would drink it all day! It has fat so will replace the fat you miss out on from dairy, and is fantastic in baking, rice is better for savoury thing though
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and glutino brand pretzel and bread sticks.....sooooooo good, no-one in our family noticed the difference
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enjoy life brand has cookies, cereal bars, cereals, they are guaranteed top 10 or is it 11 now? Allergen free, we give them to our daughter who is celiac, and has anaphylactic milk and egg allergies and she loves them. The stuff is sweet, so we tend to break it in to portions
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our daughter has just turned 3 and we told her that there something in some foods called gluten and it was hurting her insides, if she kept eating it she might get really sick. We also told her that if anyone hives her food to say no thank your have to ask my mom first. She has anaphylactic allergies so she has been having this reinforced since she could talk. I told her she wouldn't have the same bread or pasta as before and some of her foods she might never be able to have again. Her response-can I still have my cheese and ice cream? ( we have always bought vegan and gluten free) can you find some bread and pastas can eat? When I told her yes to both she said okay and carried on playing with her toys. We have never had a single tear, and she even asks if I can find a way to make things for her,like lasagna. We include her in making things and make sure at least one dish at the table is safe for her and she is happy.
turns out she is the best advocate for herself at 3 yrs and 2 days old she says no even to her grandparents!
he may be upset at first, but he will get over it. He may also be feeling some symptoms he can't describe to you and realize how much better he feels. Our daughter turned round and told me her owies in her knees had gone, I didn't even know she had knee pain!
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my 3 yr old was terrible before gluten free, said the tv was too loud, 3 hr tantrums, very clingy, 1 month later she is a different kid. I'd give gluten free a try, what harm can it do?
What Would You Do
in Coping with Celiac Disease
Posted
I would tell the school this is a general leaflet and then explain your sons reaction, reinforcing g that everyone reacts differently to gluten (just like food allergies, seasonal allergies, food intolerance), that's what we did with my daughters school, and they were very willing to listen and always ask how she is feeling.
she got glutened a few weeks ago and they asked me what the should be on the lookout for and what symptoms meant they had to call me to collect her