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Poll: New and need help (3 member(s) have cast votes)

New and need help

  1. Celiac Disease- Parents of kids or babies with Celiac Disease (3 votes [100.00%])

    Percentage of vote: 100.00%

  2. General Forum (0 votes [0.00%])

    Percentage of vote: 0.00%

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2 replies to this topic

#1 Tracey

 
Tracey

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Posted 20 March 2004 - 01:59 PM

Help! My 4 1/2 yr old son WITH DOWN SYNDROME has somewhat been diagnosed with Celiac Disease...I think. He's been having a lot of sinus infections this past year and his Dr did a recent allergy test. I've just recieved a call from the Dr's office saying he's mildly allergic to wheat and corn and they have mailed me a list of what is acceptable and what is not. The diet is for people with celiac disease. I will not be able to confirm this with the dr's office until Monday so that's why I'm unsure about this. I am aware that Celiac disease is pretty common in people with Down Syndrome. My question is this....where do I begin? I'm overwhelmed! Everything in my house countains gluten I think! I also have a 13 yr old and a 2 yr old so I'm not going to be able to let them eat what Jacob likes and can't have in front of him. That would be cruel!!! Any suggestions from the pros??? Where do you get the special food products? Any helpful advice would be soooo appreciated.

Thanks in advance,
Tracey
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#2 lauradawn

 
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Posted 20 March 2004 - 09:00 PM

Hi Tracey,

Im not an expert at this.........yet. I was just recently diagnosed with celiac disease ( blood work) and b/c my children (2 year old twins ) have had some significant health issues since they were born, I decided to have them tested as well. I have recieved the results from the blood work, but have not seen the Dr until Wed. I do know that it looks like they are positive as well, so I am doing the same thing you are. Going through the pantries. When it was just myself...I made my own pantry of things that were gluten-free. However, now that my kids are both likely to be celiac, my plan is to make my house gluten-free. IF my husband really wants to although he is very supportive, he could have his own cupboard. Depending on what the Dr says you may want to check your other kids out too. Celiac is a genetic disease. If your son has it your others may have or possibly have it in the future. Something to consider.

I buy my special flours from the health food store. For the most part everything else I can by from the grocery store. I know it seems overwhelming at first, but the shopping part and finding appropriate foods is not that difficult. There are some product listsings on the web, that can help you find just about any kind of food, you just have to find the right brand. Take one step at a time, and the people here are great! Just hang in there. Im still in that waiting process to, but you may find that your sons health issues improve. It's worth the inconvience Im sure.

Please let us know
Laura
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#3 Terri-Anne

 
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Posted 21 March 2004 - 11:53 AM

:) Hi Tracey,

My son is 4 years old and has a rather sensitive wheat allergy, but does not have celiac disease, according to our pediatrician. We've been attempting to keep him wheat-free for approximately 2 years now, though I still wouldn't consider myself an expert. I learn something new all the time.
I know it can be very overwhelming to try to keep wheat out of the diet at first, as when you read labels it seems EVERYTHING in your entire pantry has wheat as a staple or supporting ingredient. You've come to the right place though. The people at this web site are very friendly, experienced, knowledgeable and helpful!
My first piece of advice would be to keep coming here, on an on-going basis.
My second piece of advice is to get into contact with your nearest local chapter of a Celiac support group. They are good for letting you know specifically what products are available in YOUR area, as well as which ones could be substituted for those that aren't available in your area.
It would be important to know whether your son has actual celiac, or a wheat allergy, as with the wheat allergy alone, the diet can be slightly (though not amazingly) more liberal. For example, my son can eat regular Rice Krispies, which folks with celiac must avoid, because of the barley malt in the ingredients. For the most part though the wheat-free diet is very, very similar to the celiac diet, as wheat is still the main offender. That's why learning from people experienced with celiac is the best.
As for your son having to stand by and watch the other kids eat things he cannot have, Once you catch on to a few products which he likes and can have, he will likely accept substitutions well. Many things can be substituted exactly, for example, Logan loves rice crackers with cheese or peanut butter when the others eat Ritz crackers with cheese/peanut butter. He knows that the crackers the others are eating are "wheat" crackers which make him feel yucky, but his yummy rice crackers won't make him feel sick, AND I think he gets somewhat of a kick that the others can't have HIS crackers, they are exclusively HIS. THEY think it is a special treat when they are allowed to have some of HIS special foods. Before I went shopping yesterday to restock his own wheat free pantry, I had nothing for his breakfast, so I let him have a can of Campbell's chicken and Rice soup for breakfast. He thought that was neat.
One of the first things that I was mortified that Logan wouldn't be able to have was pasta, as he loved pasta. My local celiac group suggested the Tinkyada brand pasta made with rice flour, and told me exactly where to buy it locally. We discovered the cooking time is slightly longer, but the cooked pasta is almost identical to the wheat flour type.
Do you bake? I've just finished baking a batch of banana chocolate chip muffins for Logan using a combination of rice flour/potatoe starch/tapioca flour, and guar gum (which replaces the stickiness of gluten), and have two loaves of bread in the oven for him for the week ahead. I have some cupcakes I made for him in the freezer, as well as a few brownies. His own pantry has a bag of Mi-Del brand chocolate chip cookies, Mi-Del oreo style cookies, and he just finished his Mi-Del animal crackers off yesterday.
We try to keep the "tempting" wheat products like cookies, up high in our "WHEAT PANTRY", but his safe rice flour cookies are reachable in a pantry in the opposite side of the room. He still needs to ask permission before having a treat, but if he happens to sneak as kids sometimes do, he usually gets into a wheat-free snack. At least that way his appetite may be ruined, but he won't have a reaction, which are pretty dramatic.
I wish you luck in your new adventure with providing your son with a wheat free diet. Come here often, and ask plenty of questions. The folks here really are a wonderful support network. If you'd like I could share a couple of basic recipes, brands of soup, treats, etc. with you, as my son is also wheat free, (to the best of our ability).
Oh yeah, and the Dana Korn book "Raising Our Celiac Kids" is also a great resource.
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