New To This- Finally Taking The Steps! Entero Lab?

[jitters]

Although no one in my family has an official diagnosis of Celiac Disease, my mother has been eating gluten free for 10 years now. I believe I am gluten sensitive as well and have been off and on gluten for about 4 years now, its a battle I was losing until recently as I can tell I am just not well when I eat gluten. My question is about my daughter though. She is 3 years old and I have always thought she may have an issue with gluten. I have tried a few times to put her on a gluten free diet but both her and her father are picky eaters. And I don't just mean slightly picky- VERY picky. This is something we are trying to overcome but pizza, mac and cheese, bread, etc are staples in their diets. Meat is something they don't eat very often because of a texture problem. We are making some progress on the pickyness. Fast forward to now:

My daughter has a Jekyl and Hyde personality. She can be very difficult and she is VERY smart. She will not play with toys and seems to have the "blahs" a lot unless someone is entertaining her. She is my clone when I am on gluten. I've noticed when she eats pizza she has a hard time sleeping, and I've also noticed that sometimes she is always tired. She also gets rashes and circles under her eyes as well as having some issues with constipation. I know in my heart she has gluten issues.

So... I am finally having her tested. I've decided to skip the doctors office (they think I'm nuts since she is physically healthy with no major concerns at this point) and go straight through Entero Lab. I'm doing this also because I've heard stool samples are more reliable than blood tests and I'm afraid a blood test would come back negative and everyone would give me the whole "I told you so" look. Of course, I would be ecstatic if her tests come back negative. I would love to not have to worry about my daughter and food.

My concern/question is this: has anyone here tested their preschoolers with this company? Any stories you can tell me? I think my in laws believe I am crazy as I tell them I have issues with gluten but sometimes eat it (my fault I know...) so this is why I am finally having some tests done. I feel this way I'll at least have some "proof" to show them and maybe some support and help from them. I plan on taking the results to her doctors once I have them. Does anyone here have any stories about this company and their tests? Do you feel they are reliable, or is it a gamble like blood tests can be?

[CarlaB]

Welcome!

I have mixed feelings about Enterolab. Dr. Fine hasn't published his research yet, so most doctors will not accept it for a diagnosis. There are mixed feelings around here. Some people love it, others question its accuracy.

Dietary response in my opinion is the best indication of whether you are gluten sensitive. However, if she's still eating gluten, personally, I'd have the blood test done. I'd try out the diet no matter what the result of the blood test.

The reason I'm writing in is to tell you there is gluten-free pizza. My daughter and I like Amy's, but we doctor it up a bit with more cheese and sometimes other pizza toppings.

There is also gluten-free frozen mac and cheese. I've also made homemade mac and cheese with Tinkyada Pasta. She won't be able to tell the difference.

[vampella]

Welcome!

I have mixed feelings about Enterolab. Dr. Fine hasn't published his research yet, so most doctors will not accept it for a diagnosis. There are mixed feelings around here. Some people love it, others question its accuracy.

Dietary response in my opinion is the best indication of whether you are gluten sensitive. However, if she's still eating gluten, personally, I'd have the blood test done. I'd try out the diet no matter what the result of the blood test.

The reason I'm writing in is to tell you there is gluten-free pizza. My daughter and I like Amy's, but we doctor it up a bit with more cheese and sometimes other pizza toppings.

There is also gluten-free frozen mac and cheese. I've also made homemade mac and cheese with Tinkyada Pasta. She won't be able to tell the difference.

I agree fully with Carla. I'm on the mixed feeling fence. I did put out money for the gene test, even though my daughters ped say's they don't know all the genes that cause celiacs and such, I did it for me but then, I still had questions. MY daughter 4 yrs doesn't have an "official" dx BUT we do KNOW 100% she has celiac disease. She was ill and hasn't been ill a day since going gluten-free *unless I accidently gluten her* which has happened a few times.

My daughters both like Amy's pizza jazzed up, home made mac & cheese with tinkyada pasta, homemade chicken fingers and fries. we also make pizza with kinnikinnick pre made pizza crusts, we make tortillas with food for life brown rice tortillas.

[Juliet]

We got an official diagnosis with our doctor for our son and not Enterolab, but that doesn't mean I wouldn't have used it. I honestly didn't know about it then, but it seems that a lot of people trust the place.

As for gluten free food, I know of two gluten-free mac & cheese mixes (Annie's, which is traditional orange color, and DeBoles White Cheddar & Shells - which my son prefers, especially when I add a little extra parmesan & cheddar cheese), Ian's frozen gluten free chicken nuggets & gluten free fish sticks, Whole Foods has good frozen pizza crusts, and I like the Gluten Free Pantry French Bread & Pizza Crust mix as well as Chebe mix. Tinkyada pasta is great, and Ore-Ida Tater Tots and also Tater Puffs from Whole Foods are both gluten free (I prefer Whole Foods). There are a lot more options out there even from just a year ago, especially with the new labelling laws.

And as for the gene test, the statistic is something like 99% of the people who have Celiac Disease have one of two different genes: HLA-DQ2 and HLA-DQ8. There is a very small amount of people who have the disease and neither of these genes. And even if you have the genes (which something like 30-40% of the population does), obviously most will still not get the disease (right now, only about 1% of the population has the disease, however a very large majority of those people are undiagnosed). They are now doing studies on families that have multiple diagnoses (sp?) to see if there are other correlations in addition to the genes that cause the disease to be triggered.

[jitters]

Thanks everyone for your answers. I think the most frustrating thing about all this is that there is no test that can say 100% whether you have Celiac or not. It drives me nuts! Especially when you have doubting family and friends and the blood test or even biopsy comes back negative. The test I'm getting from Entero Lab isn't the gene test, but the other one that tests for gluten intolerance (supposedly). My plan is to get the results and then discuss it with her doctor. Either way I'll do the diet test simply because I eat that way. The big obstacle will be my husband- there is no way he'll eat gluten free!