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moonlitemama

Should I Pursue This?

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I recently got the Enterolab results for my 8 & 6 year-olds - both showed gluten and casein intolerance, so we've eliminated both from their diets. However, my 8yo is crushed by the thought of never having hot lunch at school again, so I started looking into what it would take to get the lunches modified for him occasionally. The school requires a signed doctor's note, explaining that the diet is medically necessary. So, I called the pediatrician and explained to him (he didn't know we were pursuing the testing through Enterolab with all three kids & had just tested the 2yo for celiac via bloodwork, which came back negative; we did not try testing the older two by bloodwork). Long story short, he doesn't buy into it at all. "That's not how we test for it," he said.

He did talk to the school, though to see if they would accommodate the diet as if it were a religious or personal belief, which they are willing to do. However, we would have to come up with any substitutions (and pay for them) rather than the school district.

So, I'm wondering - should I pursue this matter? Look for a different doctor? We just switched to this doc last year, but I haven't been all that impressed, so it wouldn't be horrible to switch doctors. Or do I just drop it and see what accommodations they're willing to do without a doctor's note?

Anyone have any advise or suggestions? Anyone gone through this?

Thanks!

Raechel


Raechel

GI "issues" since Nov. 2006;

negative bloodwork for Celiac February 2007

positive Enterolab for Gluten & Casein intolerances 8/7/07

soy-free since 5/07, gluten-free since 6/9/07, dairy-free since 8/9/07, glutamate-free since 7/13/07, trying to find answers...

DS (2yrs)

negative bloodwork 11/07; positive Enterolab for Gluten & Casein Intolerance 12/10/07

dairy & gluten free since 12/11/07

DSs (6yrs & 8yrs)

positive Enterolab for Gluten & Casein Intolerance 1/10/08

dairy & gluten free since 1/11/08

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Have you seen if you can get a signed doctor's note from Enterolab?


McDougall diet (low fat vegan) since 6/00

Gluten free since 1/6/07

Soy free and completely casein and egg free since 2/15/07

Yeast free, on and off, since 3/1/07 -- I can't notice any difference one way or the other

Enterolab results -- 2/15/07

Fecal Antigliladin IgA 140 (Normal Range <10 units)

Fecal Antitissue Transglutaminase IgA 50 (Normal Range <10 units)

Quantitative Microscopic Fecal Fat Score 517 (Normal Range <300 units)

Fecal anti-casein (cow's milk) IgA antibody 127 (Normal Range <10 units)

HLA-DQB1 Molecular analysis, Allele 1 0501

HLA-DQB1 Molecular analysis, Allele 2 06xx

Serologic equivalent: HLA-DQ 1,1 (subtype 5,6)

Fecal anti-ovalbumin (chicken egg) IgA antibody 11 (Normal range <10 units)

Fecal Anti-Saccharomyces cerevisiae (dietary yeast) IgA 11 (Normal range <10 units)

Fecal Anti-Soy IgA 119 (Normal Range < 10 units)

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Have you seen if you can get a signed doctor's note from Enterolab?

Now that is an interesting thought! After all, Dr. Fine IS a doctor.

Most doctors are so set in their old ways, that they won't consider newer ones to be valid. It's like my doctor, telling me "That is not what I've learned in medical school!" When, 30 years ago? So what she didn't learn it when she went to medical school, things change!

Enterolab's way of testing is new. That is not how 'we' do it. Of course not. So what! I think it is valid, and lots of people's stories who got better after testing with them and went off gluten, soy, dairy, whatever they showed to be a problem. I think the evidence speaks for itself.

If you don't really like the doctor you are with, you might as well switch to another one. I wished that was possible here, but we have a severe doctor shortage in Ontario, and many people don't even have a family doctor. I am stuck with the one I have.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

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Is there some kind of hot lunch you can bring him from home once in a while that he really likes?

You can even add a fruit smoothy for that extra special touch.


Cindy

Gluten Free since November 2006

Lactose Intolerant since 1980

100% Lactose Free since May 2006

Caffeine Free since August 2007

Hashimoto's Disease

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Thanks for the replies.

I just might try contacting Enterolab and see what they say. That would sure make things easy.

I had such good luck with the doctor I was seeing (but I don't know that she sees kids). When I talked to her about wanting to try the Enterolab testing (we had exhausted all of her ideas), she looked them up online as I sat there in the office, read through their site, and said, "well, that makes sense...sure, why don't we have you tested through them." So, I'll give her a call and see what she thinks about the kids, or maybe check with their old doctor as well.

I was just thinking today that maybe it's worth pursuing - I'm sure a medical note is going to be needed to follow their diet at camps as well as school, etc. My ds went to a week long boy scout camp last year and loved it...won't be so easy to do anymore. But, we'll cross that bridge when we come to it.

It's not really a matter of my son getting a hot lunch - I already pack him hot lunches once a week or so. And we have fun packing his lunch - we try to keep some novelty or something special. Many days I've come in to say hi during lunch (it's when I'm dropping my younger son off for Kindergarten), and the other kids will be oooing and ahhhing over his lunch or saying they wished I could pack their lunch :-) I think it's more a matter of fitting in. Having a school lunch is a fun treat all of it's own (even if he doesn't really care for a lot of the meals - I've actually had him refuse to get hot lunch some days - he'd prefer I pack it. But, occasionally...


Raechel

GI "issues" since Nov. 2006;

negative bloodwork for Celiac February 2007

positive Enterolab for Gluten & Casein intolerances 8/7/07

soy-free since 5/07, gluten-free since 6/9/07, dairy-free since 8/9/07, glutamate-free since 7/13/07, trying to find answers...

DS (2yrs)

negative bloodwork 11/07; positive Enterolab for Gluten & Casein Intolerance 12/10/07

dairy & gluten free since 12/11/07

DSs (6yrs & 8yrs)

positive Enterolab for Gluten & Casein Intolerance 1/10/08

dairy & gluten free since 1/11/08

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good luck! I just wanted to add a quick aside...going to boy scout camp could be REALLY tough for your son. odds are they would have a hard time inderstanding all of the nuances of the diet, including cross contamination, etc. and he would have a pretty hard time. Think of what would happen if he got sick. Given that it's only a week, you might be able to send food for him, like bread and peanut butter, so that he can easilyt make his own sandwich if he's worried about a meal. But I think a MUCH better idea would be a camp especially for celiac kids. they have them all over the country, and you wouldn't have to worry. do some googling to find one near you. I have been going to various camps for 8 years, and it is an incredible experience. A celiac camp would allow your son to participate safely.


Gluten Free since 10/07

Mildly Lactose Intolerant, slight intestinal symptoms after eating milk products, but easily corrected with lactase enzyme

Endometriosis- DX'd 5/07

Gluten Antibodies- "negative"...don't know exact numbers, am highly suspicious...

DXed celiac 12-19-07 via genetics/elimination diet- DQ2 allele

Brother with Celiac, aspergers...his tests were all negative (he didn't have genetics done), including endoscopy, but he definitely is at the least gluten intolerant...highly suspect my mother has it as well- she has hyperthyroid, fibromyalgia, hemochromatosis, and now colon cancer, and she has been weak and exhausted and just generally sick. She's going to get tested.

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Thanks for the suggestions about camp. I'm sure boy scout camp would be a nightmare. Thankfully, we won't have to deal with that this year - ds just decided to stop going to boy scouts. But, I will look into the celiac camps. That sure would be easier.


Raechel

GI "issues" since Nov. 2006;

negative bloodwork for Celiac February 2007

positive Enterolab for Gluten & Casein intolerances 8/7/07

soy-free since 5/07, gluten-free since 6/9/07, dairy-free since 8/9/07, glutamate-free since 7/13/07, trying to find answers...

DS (2yrs)

negative bloodwork 11/07; positive Enterolab for Gluten & Casein Intolerance 12/10/07

dairy & gluten free since 12/11/07

DSs (6yrs & 8yrs)

positive Enterolab for Gluten & Casein Intolerance 1/10/08

dairy & gluten free since 1/11/08

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FYI ~ my son went to scout camp 3 times after dx, and my other son works at a church-affiliated summer camp. Both were perfectly willing to accomodate his needs. Scout camp: 1. gave us dedicated space in the walk-in to keep his food 2. posted his picture on the fridge, so the staff knew he was allowed to help himself and 3. happily accepted our donation of a dedicated allergen-free microwave.

If you start early, and are willing to help and educate, most camps now are ready to meet you halfway. Celiac camps are a great idea, but how likely is there to be one as close as some other local camp?

joanna


Mom/wife to celiacs dx 12/03 and 12/04

Success is never final and failure never fatal. It's courage that counts -George Tilton

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