StephanieL

I make a great Mac and Cheese ! I use rice pasta spirals and then melt goat cheese with natures balance butter substitute and some sea salt. It tastes like the Annie's my son always loved! Goat cheese and milk is great, tastes almost exactly like cows milk but no allergy issues!

98+% of kids with a cow milk allergy are also allergic to goat milk/cheese. It isn't a good idea to try it without an allergists go ahead because of this high likelihood of cross reaction.

So he's had 2 blood testes that are + and a family history.

He's got Celiac. I would never put my kid through an endoscopy when the facts are clear.  If the GI is willing to officially dx. based on all this, take the dx and get the kid gluten-free. He'll learn in time what eating gluten does to him if he chooses not to follow the diet. Also, as Mom you do the grocery shopping I assume. You do have some control in his diet. Will it stop him from "cheating"? No, but it's a start.

If she's borderline positive AFTER 2 months gluten free, I would suspect her to be FULLY positive if you were't gluten-free at the time of the test. I would not get any more testing, you have enough. A positive is a positive especially if there was major improvement with changing her/your diet!

I would be sure your next Dr. is willing to write a formal dx based on the past blood work and the improvement when gluten was removed from her diet. This will make it possible to get a 504 plan or other accommodations when they may be needed in school in years to come!

Great job on finding it so early! Many kids suffer for years before they are dx.  You rock Mom!!!  Keep up the great work!

  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!

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?

My son will never eat gluten again (if he ever gets to eat again) and we did Catholic school for two years in addition to preschool, but NEVER had to have a note from the mds.  I find your comment very rude as if you are Celiac, why would you ever think you would be able to eat gluten again?

You are kidding me, right?  Why are you yelling at me about why some people feel the need to have a formal dx?  What you do with your kid is your business, I was just answering your question as to why some people need/want a formal dx.  Your comment doesn't even make sense, yes if you have Celiac why would you eat gluten but the OP said there isn't a formal dx so why would they NOT eat gluten again?  

Also for accommodations in schools (re: a 504 plan which legally requires schools to do things for a child) a formal dx. is needed.  You may not have needed such for your school but there are others who do and this is why it's needed.

Please, before yelling at others for being rude, maybe check your post before hitting reply!

When testing does not agree with clinical symptoms, in this case gluten-free = symptoms gone, why is formal testing needed IMHO.

Because if the child needs accommodations in school, a formal dx is needed. Also, many people need it to maintain gluten-free for LIFE.

OP, I am in the Cleveland area.  Do you mind PMing me who your Dr is?  We are in the midst of trying to find a new one.  Thanks.

There is no gluten labeling required in the US.  Also, there are NO labeling laws for "same equipment/shared line/same facility" for ANY food/allergens.  There is current legislation to change this but there are FALCPA regulations that are still being hammered out over 6 years later.

It is about reputation and word of mouth and trusting your food if it isn't naturally gluten-free.  Even calling may not be enough because there are plenty of companies that won't answer questions (which I won't buy from after that but that's just me!)

Edit: the stock bottles of medications always come with a medication printout. You can ask your pharmacist to let you read through it to verify you can take it safely, since it contains all the ingredients. Just make sure to do it before you pay for your meds, because in the US once the medication leaves the store you can't legally take it back.

I have looked at these and have never found anything but "fillers" listed.  Including Top 8 allergens.  Where would this info be listed?

I too use Subscribe and Save from Amazon. Also, there is a link that a (all be it small) portion of your purchase can be donated to the Celiac Center in Baltimore for research!

This post needs to be deleted. The inaccuracies are going to cause issues for people if they don't read the entire thing.

McDonald's has dedicated friers, which only French Fries and Hash Browns are cooked.  Nothing of a gluten nature is cooked in those friers.

This is NOT true. It varies from one store to another.

Saying we have an "allergy" seriously underestimates the tragic consequences of this disease.

I have to disagree with you on that one.  Yes, gluon for a person with Celiac is bad but you are not going to die from one exposure.  The use of quotes in "allergy" is just as offensive to someone with a true allergy as saying Celiac is a allergy to someone with Celiac.  Rotation diets dare NOT for people with Celiac OR allergies!

With food allergies and Celiac, DS can't have any candy.  We do the Switch Witch here who takes the candy and leaves toys (Lego's this year).

Also, we give out goodie bags free of candy to T-or-Ters,  This way no kid will be left out no matter if they do/don't have food issues!

If you suspect Celiac, you need to get her tested BEFORE you change her diet IF you want an official diagnosis!  You CAN NOT get good results after you take her off of gluten.  With the family history, I would test.

Good luck!