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Old 10-04-2006, 08:04 PM #1
jccgf jccgf is offline
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Check out some of these sites. They have good explanations of the various types of reactions. Our mainstream allergists usually only focus on IgE "immediate" allergies, not IgG "delayed allergy" . I have no connection to these sites, but they offer some quick reviews of the subject matter.

http://yorkallergyusa.com/dfa.html

http://www.foodallergytest.com/ (you need to poke around this one)


The bottom of this one has some articles on GERD:
http://www.foodallergysolutions.com/...ergy-news.html


Quote:
I am wondering about acid reflux, could one get acid reflux as an intolerance reaction?
Cow's milk and gluten are top offenders~
http://www.cryingoverspiltmilk.co.nz...uxdisease!.htm


You might be able to find something helpful in these tips, too! See Appendix B
http://cantbreathesuspectvcd.com/page10.html


Now that I have exhausted the resources I have given you, I wish I had some personal experience. Well, for myself, my GERD greatly improved on a gluten free diet, but I don't have any experience with my children. But...others have~ and I hope they will post.

Cara
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Old 10-04-2006, 08:18 PM #2
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I don't have any reflux experience, but have also heard cow's milk is a big culprit. I wanted to suggest you cross-post over on the Child Neurology forum (http://forums.braintalk2.org/forumdisplay.php?f=9). However, I get the feeling that most of the Child Neurology folks are migrating back to Original BrainTalk. So, I'd also suggest posting there, on the original Child Neurology forum (http://brain.hastypastry.net/forums/...play.php?f=115 - if you haven't already been here, you'll have to register. You can use your same name as here.). Lots of those folks have reflux experience, and they might be able to tell you about doctors, too.
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Old 10-04-2006, 09:59 PM #3
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Red face Re: More questions Re: 8 yr old recently diagnosised

Hello,

I have been going to the websites I have found on this site. I really liked the "Crying Over Spilt Milk". Anyone here have kids with multiple food allergies like milk, wheat/gluten, corn, peanuts, and eggs? I am finding it challenging to find food without all five of these ingredients. I did find rice chex for cereal. But wonder since Joshua has such a strong reaction to grasses if this will affect him too. So far, we don't know what IGE reactions he is having to the foods, since we don't usually see any outward allergic signs. Can IGG reactions impact as IGE reactions but not show up as an immediate reaction? I do now notice that his ears do change red when he ate a food at school with one of these ingredients. I just got the doctor's script for eliminating the foods. How does one get the school to make lunches free of these foods. My son is on an IEP and is in the Level 3 placement. It will be really interesting when they go to McDonalds and other places and get lunches there. Is there any fast food places that anyone can recommend to be free of these foods on some of their menu items?

I will also look into some of the recommendations on the can't breath...website. I hope some of these will help Kayla, since she has many of the symptoms listed there. We have been using Soy milk in place of dairy. But, I know the school isn't following this diet. Our doctor wouldn't write a script but referred us to the allergist to do it instead. So, I will call them tomorrow to see if they will do it. I Hope. Any ideas of lunches for school which do not have to be refigerated or cooked. This is our schools regulations... Which I think will be difficult to do.

Also, does anyone know of any financial programs that will assist in paying for the speciality foods since they can be expensive when you are putting your whole family on them. My oldest son also came back milk, egg, and wheat allergy. Are there foods you can make that do not need special ingredients, like snack foods minus (wheat, corn, peanuts, milk, eggs).

Thanks

Diana
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Old 10-04-2006, 10:33 PM #4
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Quote:
I did find rice chex for cereal.
Rice Chex has barley. If you are trying to be gluten free, barley needs to be eliminated too. There is an alternative to the Chex cereals and that is Health Valley Rice Crunch-ums. They are not made in a dedicated facility but do not have any gluten ingredients.

Barley is a sneaky ingredient - I have been fooled more than once by barley. It is not in the top 8 allergens so it does not have to be in the allergen statement. It is often hidden as "malt".

The only place I know of that helps people with the cost of the GF diet is the UK. From what I understand, if you are diagnosed by biopsy, then the food is a prescription. I don't know of a program in the US. Most insurances will not even pay for a consult with a dietitian The medical community does not see the heal qualities of food.

Too tired right now to post links to fast food places. Many of them will have info on GF selections. This may help you for McD's http://www.mcdonalds.com/app_control...nts.index.html

Anne
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Old 10-04-2006, 10:46 PM #5
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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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Old 10-04-2006, 10:43 PM #6
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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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Old 10-05-2006, 09:35 PM #7
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Post Thank You, Thank You, Thank You

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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Old 10-05-2006, 10:06 PM #8
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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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Old 10-05-2006, 11:09 PM #9
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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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Old 10-05-2006, 12:09 AM #10
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Quote:
Originally Posted by specialneeds View Post
I just got the doctor's script for eliminating the foods. How does one get the school to make lunches free of these foods. My son is on an IEP and is in the Level 3 placement.
I'm in California. Last week, Tom came home with a form: Medical Statement to Request Special Meals and/or Accomodations from the Nutrition Services Division of the California Dept of Education. I'm assuming he got it because I filled out the school forms listing allergies. It has two options: A) Participant is disabled or has a medical condition and REQUIRES a special meal or accomodation. A licensed physician must sign. and B) Participant is not disabled, but is REQUESTING a special meal or accommodation. An example may include a food intolerance. A licensed physician, physician's assistant, or registered nurse must sign this form.

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.
Quote:
Originally Posted by specialneeds View Post
Any ideas of lunches for school which do not have to be refigerated or cooked. This is our schools regulations... Which I think will be difficult to do.:
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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