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10-04-2006, 10:43 PM | #11 | ||
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Senior Member (jccglutenfree)
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Darn...I just accidentally backed out of this and lost my post. I'll give it another quick go.
Meanwhile..may I suggest a new post titled something like this to draw out some more responses. wheat, corn, peanuts, milk, eggs free- HELP! I was also going to suggest vising the Child Neurology board..as I think some of them are very well educated about the ins and outs of IEP's in the school, perhaps not in regard to food, but in general some really know the law. I do believe the school has to provide for your child if you have a doctor's script, but I think most of us feel we wouldn't really trust the school to provide safe food...so just send our own lunches and keep snacks/treats available. I think you would just need to be very involved to make sure they get it right! I thought that one can save receipts and deduct the food expenses as a medical cost, but I'm not sure many do it. I've heard the hassle isn't worth it, but maybe someone else here knows differently. [oops...maybe in UK or Canada???? I don't of anybody personally who does this] I think others here will be able to help with snack ideas, too. Here are some recipe sites... I think the Paleo recipes might fit most of what you need, and the GF/CF ideas will be a good start, and then just watch out for the other problem foods. Paleo Diet Recipes Gluten Challenge :: Gluten, Dairy, Soy free Menu, Lunches and Snacks Plans! Recipes4US - UK - Special Diets GFUtah GFCF Recipes GF/CF Recipe Forum You might be able to find some info about handling schools here, too. It looks like they have some info. The Food Allergy & Anaphylaxis Network (FAAN) But..make a new post about help with dietary restrictions. I know Judylv's son has many restrictions, and others here as well. Cara
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. Last edited by jccgf; 10-04-2006 at 10:49 PM. |
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10-04-2006, 10:46 PM | #12 | |||
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Hi Diana,
I found this website to give a good explanation of IgE, IgG, and IgA: Diet Net I recently did some IgG testing myself. I cut out both the moderate and mild categories of food I was reacting to and felt better. If you have been cutting out casein, then the IgG for that won't show up anymore as your body will stop producing antibodies to it. Currently, I'm not eating gluten, corn, dairy, soy, nuts & seeds. It's a long list, and I pretty much have to cook everything myself rather than relying on processed or restaurant foods. Eating out if very difficult for me. There are other groups of parents who have kids with lots of special needs like yours. Here's an interesting website from a mother of a child who is autistic: Dana's View from the Inside You might also find the yahoo groups on "enzymesandautism" interesting. Here's Karen DeFelice's website on digestive enzymes. From what I gather, it's a lot of figuring out what works for you kids. I don't think you can depend on the doctors figuring it all out for you and testing isn't perfect. Claire
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Two identical copies of DQ1; HLA-DQB1*0501, 0501 |
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10-04-2006, 11:36 PM | #13 | ||
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Quote:
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It makes sense to me to eliminate all potential reactions (positive scores or high risk cross reactive foods) and then, once they "even out" challenge under a dr's care. (Or at least in close proximity to a hospital) That way you can establish their true tolerance levels, and weed out false positives. Meanwhile, a food diary may help to find any more links to foods that were not tested for. |
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10-05-2006, 12:09 AM | #14 | ||
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I really need to talk to either his teacher or the cafeteria folk about the form. I prefer Option A, but *I'm* not requesting that they feed my son. GF without rice eliminates a lot of ready made stuff, and then to remove dairy on top of that... And I don't trust them. They could do a lot of whole foods, but he's a picky eater and it's important that he actually EAT the food he's served. So... I'm doing nothing. Anyway, if you have something from your doctor, I'd see if your state has a similar type form. Oh... and what's a "Level 3 placement?" Tom has an IEP. I have no idea what level he is. Tom is in special ed and they have a refrigerator (small cube) and a microwave. I send in cold food, they refrigerate it, and later heat it for him. I would think with the note/script from the doctor, something could be arranged. Somewhere in the school there should be a refrigerator and microwave for him. Maybe call another IEP to address it? Maybe the spec ed resource person could take charge? Or the cafeteria folk, as a compromise to not being able to meet his dietary needs? If you can find a similar form to the one I mentioned, I would think they'd jump through hoops to allow refrigerator and microwave use.
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Mom to Samantha (10), Claire (9), and Tom (7). Tom is developmentally delayed with poor vision, lousy fine motor skills and epilepsy. His seizures are pretty well controlled through diet - dairy-free, gluten-free, rice-free, and coconut-free. |
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10-05-2006, 03:09 AM | #15 | |||
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We *had* a GF Restaurants thread in the old Braintalk. Until that rises from the ashes, you might poke around out here, there's many places that have GF menus. You do have to be concerned about cross contamination however Here's one I found recently as they I see there is one coming to my area http://qdoba.com/Allergens.aspx Also - http://gfiowa.us/restaurants.htm
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Al “We cannot all do great things, but we can do small things with great love.” ~Mother Teresa |
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10-05-2006, 06:56 AM | #16 | |||
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Quote:
Claire
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Two identical copies of DQ1; HLA-DQB1*0501, 0501 |
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10-05-2006, 09:29 AM | #17 | ||
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Hi, welcome to the forum. My family eats a meat-free, dairy-free, egg-free, gluten-free, hydrogenated oil-free, corn syrup-free, dye-free, preservative-free, organic whole foods diet. Additionally, my son is corn-free and soy-free. Thank goodness we arrived here over time! It can be overwhelming to remove favorite food groups from the diet, but it can be done! Our motivation was to feel better. Once you're feeling better, that's the motivation not to go back!
I prepare our food. We brown bag it (or haul our cooler) if we must eat away from home. Here are some ideas for food to eat and/or substitutions. Milk substitute --> soymilk, almond milk, rice milk Cheese substitute --> there are soy cheeses, but we consider them "processed foods" and no longer eat them. We've found that many foods topped with cheese are just as good without ... once you get used to it! Gluten-free grains --> we eat brown rice, millet, quinoa, amaranth, buckwheat Nuts and seeds --> we enjoy almonds, walnuts, cashews, flax seeds, sesame seeds, etc. Beans --> we eat a lot of black beans, pinto beans, chickpeas, etc. Fast food for us --> We do use pre-packaged rice cakes, Tinkyada rice pasta, and rice tortillas. The rice tortillas can be toasted in a skillet to make "crackers" or "pita". It can be baked in the oven to make a quick "pizza crust". Rice cakes are good with various nut butters. My son especially likes almond butter and cashew butter on his. Recipes --> Check out the recipe threads that are just getting started in this forum. You'll find some good ideas! Also, I really like Food Allergy Survival Guide by Vesanto Melina. I have yet to purchase it since it is readily available at my library. Last edited by jamietwo; 10-05-2006 at 09:39 AM. Reason: forgot to include Tinkyada! |
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10-05-2006, 09:35 PM | #18 | ||
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Junior Member
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Just wanted to Thank all of you for all the great responses and websites. I know these will be keeping me busy for a while. I have talked to my son's nurse and she said they would let us use the frid. and microwave in his room. She said since they have a kitchen that it would not be like my daughter's school. That will be another issue. We discussed the lunches and decided it would be safer and easier to bring his lunches.
Are any of you familiar with DAN Doctors? I was surprised the one we saw told us to disregard the IGG results for all of our kids and some of the IGE results for Joshua (Wheat and corn due to cross reactivity). I have found alot of research that says some individuals will react to these foods when there is pollen involved. Even, our ped. told us to eliminate the IGE foods. Grasses and Ragweed seem to be an issue at school. They are questioning whether to not expose him to field trips like the park or nature center due to his high grass and moderate ragweed allergies. What we have noticed is only the asthma reaction, and lately red ears at times. But not other reactions, except possibly chronic fatigue. Does anyone know if there can be intolerance reactions that occur during IGE allergic reactions? I noticed some of you had children with reflux. Are there specific foods that you noticed that caused the reflux in your children. We have read that milk and wheat are many times culprets. We have been on the dairy free diet about a month, but have heard that the school hasn't been doing it all the time. Kayla also has PICA and picking skin behaviors. She also has Tourettes, at times very severe. Do any of your children happen to have/had these behaviors and did you find certain foods helped with any of these? Also, Joshua has hypersensitivitiy to loud noices. We have been told that one can get food stamps through medicaid to pay for the special foods since it is a medical problem. We will check into this tomorrow. The nurse told us this. Anyone, else hear about this? Thanks Diana |
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10-05-2006, 10:06 PM | #19 | ||
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Here are a couple of essays that may help. They were written by Dr. Lewey who is a board certified GI doc.
The first is about cross reaction between pollen allergies and food allergies: http://ezinearticles.com/?Food-Aller...lens&id=306107 This next essay is about heartburn/reflux and CD/GS. What is interesting is that Dr. Lewey mentions that he was diagnosed as gluten sensitive through Enterolab and is now GF. http://ezinearticles.com/?Heartburn-...flux&id=315638 I hope the help with the expense of the food works out. Anne |
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10-05-2006, 11:09 PM | #20 | ||
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Senior Member (jccglutenfree)
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I saw a DAN! doctor for my daughter, and he suggested food allergy testing through Sage Labs, and because she had positive antigliadin IgG antibodies suggested a gluten free diet...and then anything else she would have tested positive too. She turned 18 and didn't want any more testing.
We also consulted with another DAN! doctor about pyroluria, a condition my daughter tested positive, too. Actually, I learned about pyroluria on Braintalk from a woman named FJ, whose son's had TS among other things, all responding very well to treatment for pyroluria. In your spare time , you might want to read about that. There is a page for it in The Gluten File, or you can google it. Try googling it with "FJ" and you might find some her posts. Also, there are a small number or TS patients who respond to dietary changes. I've heard PICA can be related to iron deficiency. THat has been checked? Cara
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