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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

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VydorScope    31

Well I am a bit annoyed because I was not there for this...but ah well that is the drawbacks of a working man...

ANYWAYS the we choose this doc (pediatrician) when we moved here BECAUSE she is knowledgeable about gluten, autism, and other areas that we are concerned about. So far she has not steered us wrong, and she is highly respected here in town.

So my wife saw her today and dumped everything that has been going on with the allergy doctor, the conflicting test results, and all that. (She had to bring Timothy in for a persistent sore throat, not planned trip)

Doc said...(and some of what is on the notes she gave my wife heh)

1) Gluten is bad in his case, don't care what his test results are, keep him off it.

2) Keep him off Dairy (he has has both neg and positive test results to dairy)

3) Get some probotics - next to it has "refrigerated - immune/allergy+GI" ???

4) Get some stuff called "D-HIST Orthomolecular" ????

5) Give him Vit D3 - 1000IU

6) Give him Omega 3 (with Nordic Naturals and Carlson listed next to it) ????

She also wants to get him off the chewable singular he is on (he loves the taste of it) because it contains aspertian (sp?) which she hates. She also wants him to go up to 10mg from 5mg on that.

The thing with dairy she said was that if you are dairy free when tested you have a better chance for a false negative. Same with soy.

We are still waiting for the blood test results from the last round of testing with the allergy doctor, so nothing to add from that yet.

Next week is Timothy's already scheduled well child visit so I plan to ask more questions (since I have scheduled time off to be at that one), but what do you non-doctor-parent types think of what she said? I know nothing about "D-HIST" or the other things with ?'s.

She did send a nutritionist into see my wife too, but she said pretty much what anyone could guess. More natural, unprocessed foods and less junk. I don't need a MD to figure that out, what I need is foods that I don't have to beat my son daily to get him to eat. :)

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StephanieL    74

We use Custom Probiotics and within 3 days of starting them my son had normal BM's for the first time in his 4 year life. They are refrigerated, gluten, dairy, and soy free. Pretty much everyone in the US needs Vit. D. The claims of the D-hist are not very scientific from my knowledge for foods. Maybe for environmental but not food allergies. NOTHING but time and avoidance can help food allergies. Sounds like you are working with a holistic ped, yes?

I am sure this ped is great...but she isn't an allergist. I am trying to remember all the parts of your story but I have never heard of allergies to dairy being different if you are on vs. off it at the time of testing. I think I said this in your last post, allergy testing (when positive) is only 50% accurate. A negative is 90%+ accurate. The true test of ANY suspected allergy is a oral challenge. If you are getting positive and negative tests on dairy, I would ask the allergist for an in office challenge. What reactions are you seeing from dairy?

Why the troubles feeding him? Does he have aversions to textures? Are there other issues besides those listed? What foods is he missing that you need to duplicate?

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VydorScope    31

We use Custom Probiotics and within 3 days of starting them my son had normal BM's for the first time in his 4 year life. They are refrigerated, gluten, dairy, and soy free. Pretty much everyone in the US needs Vit. D. The claims of the D-hist are not very scientific from my knowledge for foods. Maybe for environmental but not food allergies. NOTHING but time and avoidance can help food allergies. Sounds like you are working with a holistic ped, yes?

He has a lot of environmental allergies too and the current anti-histamines seem insufficient. I think that the D-Hist is for them, and not the food stuff. He currently has clogged ear, post nasal drip, and etc.

How expensive is that Custom one? Is it easy to find?

How are you delivering the Vit D? Separate pill, or?

I am sure this ped is great...but she isn't an allergist. I am trying to remember all the parts of your story but I have never heard of allergies to dairy being different if you are on vs. off it at the time of testing. I think I said this in your last post, allergy testing (when positive) is only 50% accurate. A negative is 90%+ accurate. The true test of ANY suspected allergy is a oral challenge. If you are getting positive and negative tests on dairy, I would ask the allergist for an in office challenge. What reactions are you seeing from dairy?

He has 1 positive scratch test for dairy, 1 negative scratch test, 1 negative blood test,plus negative for casian and lactose on scratch test. I suspect dairy is an issue currently because when he was off it he started getting better. When we tested with it.. he was fine for about a week, then his GI issues started to return. Such a slow return is making it a bit hard to pin point exact cause.

Why the troubles feeding him? Does he have aversions to textures? Are there other issues besides those listed? What foods is he missing that you need to duplicate?

My guess is he has had so much bad history with food reactions (since birth) that he just now has a new-food-phobia. We have to force him to try anything new at all, and he almost always says he does not like it.

Think I answered everything? :D

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StephanieL    74

:) I think I got it ;)

Custom Probiotics seems pretty price up front (I think it was about $50-60 for the 6-strain we have) BUT it is 1-2 small scoops a day so our bottle lasted 6-8 months for 2 kids under 5. I think when I worked it out it was about $10/month which is pretty standard for a good probiotic. They are mail order and he only ships something like Monday-THursday so they don't get stuck in the postal system. If you contact him, he usually sends out a sample (which lasted for about a month for us). DS never had normal BM's even 3 months after going gluten-free. Like I said, within 3 days it was totally normal! Amazing stuff really!

We do Vit. D drops. The European medical machine suggests 4000 IU for adults, 2000 IU for kids and 1000 IU for babies under 1. We use Xymogen drops (1000 IU per drop).

If he isn't reacting with anaphylactic type issues and you are seeing issues arising from a diet including dairy, I say yeah, keep him off! Maybe try in 6 or 12 months.

How old is Timothy? I know my kids at 5 and 3 are creatures of habit. They eat the same things pretty much daily. I know i have been told a few times to look at his diet over the course of a week not in a day. I know mine have better days and not so not days but over time it seems to even out. DS was slowing down greatly on the weight thing and we went to 4 meals a day and added 1-2 cups of chocolate hemp milk daily and he's finally putting on some weight.

We are gluten, dairy, egg, soy, peanut, tree nut, banana and blueberry free here. If there is anything you think he would like that you aren't finding options for, I am here to help if I can!

Don't you wish these kids cam with directions? It would make life so much easier!

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eatmeat4good    313

I can help with #5 and #6.

#5- Vitamin D3 is a teeny tiny pill separate from the multi-vitamin, but if you are trying to keep him soy free you might need to search a bit. I use Leader brand vitamin D3 because it is soy-free. It is a 1000mg tablet.

#6 Carlson Nordic Omega 3- This is fish oil, easily found in any health food store. I also take this one.

The other things I do not know about, but I would agree with keeping him off of gluten and dairy because you have seen good results with that. The thing about food sensitivities is they can be delayed reactions making it really hard to tell what is bothering a person and what is not. But then, I think you already knew that. :)

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VydorScope    31

:) I think I got it ;)

Custom Probiotics seems pretty price up front (I think it was about $50-60 for the 6-strain we have) BUT it is 1-2 small scoops a day so our bottle lasted 6-8 months for 2 kids under 5. I think when I worked it out it was about $10/month which is pretty standard for a good probiotic. They are mail order and he only ships something like Monday-THursday so they don't get stuck in the postal system. If you contact him, he usually sends out a sample (which lasted for about a month for us). DS never had normal BM's even 3 months after going gluten-free. Like I said, within 3 days it was totally normal! Amazing stuff really!

Do you have a link?

We do Vit. D drops. The European medical machine suggests 4000 IU for adults, 2000 IU for kids and 1000 IU for babies under 1. We use Xymogen drops (1000 IU per drop).

Where did you find them? Do you drop them in his mouth, or would they go in his drinks?

If he isn't reacting with anaphylactic type issues and you are seeing issues arising from a diet including dairy, I say yeah, keep him off! Maybe try in 6 or 12 months.

So far it appears all his food issues are GI ones.

How old is Timothy? I know my kids at 5 and 3 are creatures of habit. They eat the same things pretty much daily. I know i have been told a few times to look at his diet over the course of a week not in a day. I know mine have better days and not so not days but over time it seems to even out. DS was slowing down greatly on the weight thing and we went to 4 meals a day and added 1-2 cups of chocolate hemp milk daily and he's finally putting on some weight.

On the 13th, he turned 9. :D He is our lucky baby! :D (there is two stories behind that.. but for a different thread/time)

We are gluten, dairy, egg, soy, peanut, tree nut, banana and blueberry free here. If there is anything you think he would like that you aren't finding options for, I am here to help if I can!

Don't you wish these kids cam with directions? It would make life so much easier!

Well his birthday party is Saturday, and we rented a local Karate dojo for it. They do bunch of fun stuff with the kids, and he gets to cut his cake with a real samurai sword! :) Baking a cake is easy, but they also provide pizza. They have no microwave/etc, so need to bring him something to eat while the rest of the kids eat pizza for lunch. Fortunately he is fine with eating his own food no matter what anyone else has, probably a side effect of his food-phobia :) Just need to figure out what to bring, that will surive the trip and storage and does not need to be cooked. Esply since we are currently on no mammal meat diet to test an allergy to that. That means no pork, beef, venison, etc. But birds and fish are fine. At least they are today!

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VydorScope    31

I can help with #5 and #6.

#5- Vitamin D3 is a teeny tiny pill separate from the multi-vitamin, but if you are trying to keep him soy free you might need to search a bit. I use Leader brand vitamin D3 because it is soy-free. It is a 1000mg tablet.

#6 Carlson Nordic Omega 3- This is fish oil, easily found in any health food store. I also take this one.

The other things I do not know about, but I would agree with keeping him off of gluten and dairy because you have seen good results with that. The thing about food sensitivities is they can be delayed reactions making it really hard to tell what is bothering a person and what is not. But then, I think you already knew that. :)

Not sure we have ANY health food stores here. Well there is one called "Fresh Air" (which btw stinks of perfume and incense) but its a tiny dirty hole in a wall place. I live in a largish town, population 60k, but its a college town so the population is pretty transient and poor. Not much in the way of fancy stuff.

Does Amazon carry this stuff? I shop about 1/2 to 3/4ths of everything non-grocery that we buy there cause can not usually find it in town.

Thanks!!!

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StephanieL    74

http://www.customprobiotics.com

Looks like he's going on vacation on the 23 so maybe see if you can get a sample ASAP to start trying?

Vit. D I usually just drop on his tongue. I have added it to food but as with any med, I put it in the smallest amount of food I can get away with so I am sure he gets the whole dose. I order it from Amazon. You can get Nordic Naturals there too.

When you want to share, I would love your story on your lucky baby ;) I am sure I have one I can share too. Another time and thread as well ;) lol

How much gluten-free baking do you do? I have a pretty good pizza recipe if you are interested. It can be a little hard to follow if you aren't baker (I am working on fixing that). Diaya "cheese" is a good sub for dairy free cheese.

My kids just started karate this month. I was just talking to DH about how a party there would be great for them! They have them from 2-4 for I can easily do cake and no one would expect more because of the time frame! Anyway, if you are interested in the pizza recipe, let me know.

PS- I assume that the reactions that you are seeing are not dramatic from dairy? I only ask because we deal with something called FPIES which is a totally GI mediated reaction to foods but is dramatic.

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VydorScope    31

:) I think I got it ;)

Custom Probiotics seems pretty price up front (I think it was about $50-60 for the 6-strain we have) BUT it is 1-2 small scoops a day so our bottle lasted 6-8 months for 2 kids under 5. I think when I worked it out it was about $10/month which is pretty standard for a good probiotic. They are mail order and he only ships something like Monday-THursday so they don't get stuck in the postal system. If you contact him, he usually sends out a sample (which lasted for about a month for us). DS never had normal BM's even 3 months after going gluten-free. Like I said, within 3 days it was totally normal! Amazing stuff really!

How are you feeding him the probotics?

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VydorScope    31

I added it to a small amount of water and added some Torani raspberry organic syrup to it. I have taken it and it is gross alone.

Would it mix well with his Coconut milk?

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StephanieL    74

Yeah. Just put it in as little as you can to be sure he gets it all. Also, in think they are best taken 30 minutes prior or 30 after a meal. I can't remember 100% but I think that was what we did. We started with once a day and moves up to two for a while and back to one time daily. Now it's when I remember ;). Three kids will do that to a Mom :)

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