Questions About Enterolab

[momandgirls]

Hello - I never heard of enterolab until I read about it on this site. Can someone tell me about their experience with them? Do doctors seem to be aware of them or have you had to suggest it? Do they seem to be a respected lab within the medical community? I've explained this here before but my daughter's in still in the process of her testing. TTG level was elevated, endomysial antibody normal, biopsy negative for flattening but she had elevated leukocytes and she is symptomatic. She's also severely lactose intolerant. She was positive for one of the genes in the CeliaGene test but negative for the other one. Now, the doctor wants her to eat more gluten (becuase her normal diet contains very little) and then to do the antibody test again. She seems to be getting more stomach aches when she has bread and I really don't want her to be sick anymore than she has to and hate to see her eat bread for two months just to see what the results are of the second antibody test. So, I was wondering about the Enterolab test and what other people's experience with them are. My gut tells me to just put her on a gluten free diet and she if she gets better. That would be good enough for me - even if the doctor doesn't want to diagnose her as Celiac. What do you think? Thanks!

[Rachel--24]

I think I agree with your last statement of going with what your gut says. Shes already had a positive tTG. That is the most specific test for Celiac. A negative biopsy cannot rule out Celiac. Why does the doctor want to redo the test if it already came back positive? I'd put her on the diet and let her heal. Doctors are very reluctant to give a celiac diagnosis for some reason. They want to see flattened villi and sky high numbers to be convinced. You dont need to convince the doctor. A positve tTG, positive response to diet and positive gene test should be enough.

Enterolab does stool testing. You order the tests on your own from their website. Doctors may or may not accept Enterolab as valid testing. It depends on the doctor...most dont know anything about the stool testing. Most people who use Enterolab are those who have been on the diet and dont want to resume eating gluten for testing or those who have had negative bloodwork/biopsy but still want to know if they have a gluten intolerance. Stools tests are still able to pick up antibodies months after a gluten free diet has been initiated so no need to eat gluten. Also many people have an autoimmune response to gluten that is NOT Celiac....non-celiac gluten sensitivity. Enterolab can diagnose these people whereas the Celiac bloodwork cannot. Your daughter already tested positive for Celiac so I dont know if you'd wanna pay out of pocket for Enterolab when you already have your answer. Enterolab also does gene testing but you already have those results as well.

[penguin]

Find another Dr that uses what I like to call the "duh" approach:

Tests inconclusive? Try the diet, if it works you've got it and you know how to treat it.

Duh.

Saves everyone time, money, and suffering

[Nancym]

I really don't want her to be sick anymore than she has to

There is your answer right there.

[teankerbell]

My blood test came back negative but the stool test from Entrolab came back positive for gluten sensitivity, postive for the Celiac gene and positive for Casein sensitivity. I am going with that - I don't care what the doctor says. The diet is helping (only 10 days into but better.) I am not doing the biopsy. I have my answer.

[momandgirls]

Thank you so much everyone for your responses. You're right...even if the doctor doesn't want to give her an official diagnosis, I'm tired of her being sick every day with stomach aches. With the results we have so far and the fact that she's in the bathroom for an hour every time she's eaten bread in the past two days, I don't feel like I need any more convincing. Besides, we've got nothing to lose by going gluten free, right? And, if she feels better, then that's even more evidence, in my mind, that she has Celiac or at least some type of gluten sensitivity. So, I guess my decision's made - and I really thank all of you for your words of advice.

Now, we're off on vacation on Sunday for a week. So, I'm going to try to at least get some gluten free foods for her that I know I can substitute fairly easily. I know I won't be able to substitute everything but I'll do what I can.

Is polenta gluten free? What about corn tortillas? Are they ok? I have a Stop and Shop and Shaw's nearby and a Whole Foods about half an hour away. Is there anything specific that you can recommend that's particularly good? A certain brand of pasta, for instance?

I'd love any advice or information you can give me...

Thanks!

[Rachel--24]

Is polenta gluten free? What about corn tortillas? Are they ok? I have a Stop and Shop and Shaw's nearby and a Whole Foods about half an hour away. Is there anything specific that you can recommend that's particularly good? A certain brand of pasta, for instance?

Tinkyada pasta!! Its the best....they have it at Whole Foods. Corn tortillas are safe (I know Mission brand is safe). I dont know about Polenta being gluten-free or not. Envirokidz cereal and snack bars are good too. Whole Foods also has stuff from the Gluten Free Bakehouse (breads, cookies, pies)....they are all great but kinda pricey.

[momandgirls]

Thanks Rachel - We're going away on Sunday for a week so I'm going to try to get some gluten free things for her - I'm sure she'll be eating some gluten since we're just starting out with this whole thing but you have to start somewhere, right? So, tomorrow night, we'll be heading up to Whole Foods. We'll definitely be picking up some Tinkyada pasta and I guess whatever else seems to appeal to her. Oh, what about breadcrumbs? Can you buy them or do you make your own from gluten free bread? What about a good pizza crust? Thank you!

[Rachel--24]

You can make your own breads and there are some gluten-free pizza crusts. My diet is still in the beginning stages....I have lots of healing to do so I just eat the basics...meat, fruit and veggies. Because of that I'm not too familiar with all the breads and pizza and stuff like that but plenty others will probably give you some great ideas for that.

[Nevadan]

.... Oh, what about breadcrumbs? Can you buy them or do you make your own from gluten free bread? What about a good pizza crust? Thank you!

gluten-free breadcrumbs are available at Wild Oats in my area and I'm pretty sure stores such as Whole Foods will have them also. Another suggestion is "Lara Bars" which I find very tasty as well as very healthy - all natural. In my area they are available at both Wild Oats and Trader Joe's. I find them convenient to carry along for those situations where you can't find anything that's gluten-free.

George

[TCA]

The gluten-free bread is very expensive, but I've found some good ones to make. Bob's Red Mill and

Cause You're special are my favorite. I use the end peices to make the bread crumbs with so nothing is wasted. I have a 3 page list of CD101 that I made for my son to have with him for family who keep him. I'd be glad to send it if you PM me. I have foods he likes, contamination issues, how to see if something is gluten-free, etc. on it. It might help with ideas.

[Becky6]

Polenta is gluten-free and says so right on the label.

[teankerbell]

Azteca corn tortillas are gluten-free. The two companies I called stated that they use different machinery for the corn and flour tortillas and with that information, I believe any other brand you buy is that way. Instant rice will work and risotto. Buy lots of fruits and veggies, applesauce those are safe foods and travel pretty well. Juice is another one. PB&J if you can find gluten-free bread. Or Rice cakes. Just don't buy Quaker Oats or mainstream brands. Also, she may be dairy intolerant most celiacs are at least in the beginning. Use Rice milk and buy Envirokids cereal. You can find that in a mainstream grocery store. But regarding Rice Milk, avoid Rice dream it is contaminated with GLUTEN! Read the labels carefully.

Good luck I hope vacation is fun!

I forgot, since there is a whole foods nearby, get Lundberg Rice products, rice cakes, rice chips (taste like doritos), etc. They are guaranteed to be gluten-free and CC free! I would just do my shopping there for her. They have the biggest selection of gluten-free products.