well son's biopsy came back celiacs...

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  • ktouton
    ktouton Posts: 20 Member
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    My son was diagnosed almost 4 years ago. His only symptom was the back of his teeth were rotting away. The pediatrician didn't even want to do the Celiac Panel. I had to push and thank God I did.

    It is hard at first. It gets easier as time goes by. Everyone else in the family should be tested. Celiac is a genetic condition, he had to get it from one of his parents. Siblings should be tested also.

    My son, who has eaten school lunches since his pre-school days, has brought his lunch to school every day since his diagnosis. It is the only way to keep him GF.

    GF living had an article about kids who were diagnosed recently. It is in the magazine that is out right now. Please read it. It is uplifting and we could all learn something from these kids.

    My son has no desire to cheat. If he has been "glutened" it is accidental. The longer you are without gluten the worse the symptoms will be.

    I would advise that all meals be GF and everyone eat GF in the house. It helps prevent cross contamination. The half of the family that isn't GF can have what ever they want to eat as long as they don't eat it here.

    I would not push the GF bread on your son. I have never found one that I thought was fantastic. Some are ok, others are just plain awful. What I think taste good you might think taste grainy.

    Depending on where you live there might be a sleep away camp for kids with Celiac. My son has gone every year since he was diagnosed. For one week a year these kids are just like all the other kids. It is a great feeling. I live outside of Atlanta and our local one had kids from Florida, Mississippi, Kansas and even California.

    You son can do anything other kids can do. My son spent 10 days hiking at Philmont Scout camp in New Mexico. We had to ship all his food out there ahead of time. There was an Olympic Swimmer and a Pole Vaulter (think it was pole vaulting) who have Celiac. If they can be Olympic athletes and have Celiac anything is possible. Google "Gluten Free" and your town or a large town near you. Join the group. There will be people who have the same questions you do. Most people with Celiac help newbies out because we remember what it was like. Join a local R.O.C.K. (Raising Our Celiac Kids) group. Then you will find other people who have kids with the same condition.

    Check out El Peto (www.elpeto.com). They are a Canadian company that sells only GF foods.

    Ask your doctor if they have a mentoring program. Our pediatric gastro does.

    There are groups on Facebook also.

    Kids heal quicker than adults. Six months after my son was diagnosed his blood results came back crystal clear. Our gastro also tests his thyroid every year. He has had many years where his thyroid is high (an indication of hypothyroidism). People with 1 autoimmune disease tend to get others.

    Good luck and be positive. It isn't the end of the world. Feel free to send me a message if you have any questions.
  • little_miss_panda
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    Everything ktouton said.

    The more positive family and friends can be about it, the more positive your child will be. My cousin is celiac and her two younger children. One diagnosed young (2 y.o) so never known any different, but the elder was not diagnosed until 7. The transition was made much easier by the family embracing GF living.
    Eldest (10 y.o) is not celiac, but he understands how important it is for his mum and siblings to stay GF. His father is also not celiac, so when they have father and son time, they go for a pizza outside of the house. Eldest has school dinners if he wants them, but more often than not, he opts to have the same packed lunch as the younger kid. He is very protective of her and won't allow anyone to make fun because she can't have certain foods. Talk to school as well, because when they do cooking and things, they have done gluten free recipes in the 7 year old's class so she can join in and not be left out. You may find there are more celiac kids in school than you realised as well - there were actually another 3 kids in the school on a GF diet where my cousin is.

    You have to live too though, and sometimes that means accepting some level of risk. I eat out at restaurants, but I ring ahead to ask them if they can cater for a GF diet, more often than not, they are accommodating. I have been glutened a handful of times, and it's not nice, but I do accept that it might happen occasionally, for the sake of a normal life, I continue to eat out, eat at friends' houses etc, knowing that people have made their best efforts.

    My family didn't have a clue at first, but there are simple measures they take to ensure my food is not contaminated when I eat with them, such as making a GF dish for the whole family, ensuring all pots and pans are thoroughly cleaned, they do not use wooden spoons to stir things, and putting a piece of tinfoil on the grill pan when toasting GF bread for me, rather than using the toaster. And they read labels to ensure there is no gluten in what they are cooking. If you give the family a list of "safe" foods, and precautions they can take, then you will ensure they do not remain ignorant about it, and if they continue to feed the kid gluten, then it's time to stop them having him unsupervised until they can take it on board. If they love their grandson, they will do it for his health, simples.
  • mooglysmom
    mooglysmom Posts: 319 Member
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    There are GF bagels, we love Udi's. They have hamburger buns and hot dog buns too. Pretty much, if you want it, someone makes it.

    So, stick with what he WILL eat then, just use an acceptable GF substitute. Try not to overthink this. Be careful, avoid cross contamination, read your labels (there's the 3 time rule - once in the store, once when you get it home, and again when you go to eat it). In a few years it'll be 2nd nature.

    I mean, what would you typically pack in his lunch?

    Also, yes - he could get 'glutened' somewhere. It's inevitable. Control things where you can. In all actuality, once he's gluten free, he may start to get symptoms when he's gotten something he shouldn't.
  • Flab2fitfi
    Flab2fitfi Posts: 1,349 Member
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    You may also find that he starts eating more - the body can be very good at knowing when food is making you ill and a loss of appetite can be a sign of coeliacs.

    I know as mum that it can be hard having to refuse a child something they like but they do get use to it. My 8 year old is dairy intolerant and is fantastic. He know if i eat he can eat it and he has his own stuff. He is very good when he eats out and if he is not sure he wont touch it until he has asked an adult.
  • lin7604
    lin7604 Posts: 3,019 Member
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    i sure hope he doesn't eat more after he already eats like a cow! he is always been top for weight, height and development. He eats tons all the time...
  • ktouton
    ktouton Posts: 20 Member
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    In 18 months my son grew 9". This all happened within the first 24 months of going GF. It is hard to determine if it was just his time or if going GF had something to do with it.

    Currently DS eats between 2-3 boxes of GF cereal a week. He is almost 6'4 and about 170#. I think he is headed for another growth spurt because his eating and sleeping have greatly increased.

    God help me and my wallet trying to keep him in food.