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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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Enterolab
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72 posts in this topic

Am I correct in understanding that the enterolab tests can be done even though I have started eating gluten-free for almost the last 4 weeks? Being gluten-free is sure making a difference. After reading many things the last several weeks, I am making a huge picture by connecting the dots. Everything finally makes sense, at last.

Lynn

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Lynn,

Enterolab website says that yes, you can be tested even after being gluten-free. This is because the test is really sensitive. In fact the instruction sheet tells you to stay on your current diet for the most accurate results. They also ask in a questionaire with the test if you have been gluten-free and for how long.

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I sent a post last night but then I couldn't find it this morning so I reposted. Now they are both missing. Anyways I had two blood tests done for gluten-free. I got a copy yesterday. The one was negative so they didn't even bother to run the other one. I'm waiting on enterolabs. I e-mailed them today and they told me they have had a huge influx of people requesting the test. They appologized for the delay. It supposedly was sent today and should be here in about 3 days (not including Sunday I assume). One gal here told me it took her 4 weeks to get results. Hugs, Carol B

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Thank you Taneil. Some of the information links on the enterolab site are not working for me. The page where the tests are ordered works and one other one. Unless I'm doing something wrong, and that is entirely possible.

Lynn

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Chantalle,

just so you know, EnteroLab does work with Canadians. We're in Montreal and had the gene test done on our son through them. We hesitated about the other tests, but decided not to go that way for now because the gluten-free diet has been a real solution in itself and the gene test was to see if we could more or less rule out celiac disease (alas, we could not, given the results!).

Anyway, the only thing is of course that if you decide to go with EnteroLab you will pay in American dollars, and the cost of shipping is a bit more for Canadians, too.

Best,

Kaylee

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Hi all - I just sent an enquiry to Enterolabs to determine whether or not they will do testing for Canadian residents. I also enquired as to whether the Gluten Sensitivity test is enough - it's the $99.00 one. Don't forget - that $99.00 equates to about $150.00 Cdn.!! And to put it bluntly, we're not used to paying for medical care here!

Well, really that's not quite true! Because I'm self-employed and my husband's company is small and doesn't offer medical coverage, we pay our own. We pay provincial medical (about $200/2 months I think). This covers all doctor visits, surgery, hospital stays, births, etc. Then there's the private medical we pay for which just went up to $311.00 per month. That covers dental (80%), prescriptions (80%), and certain amounts per year for things like massage therapy, chiropractic, podiatrist, etc. It also contains a small life insurance plan. Believe me, when you work for a company here you sure need to consider how lucky you are if they cover all the medical/dental! I always had that prior to our move to this province as I always worked for big companies in Vancouver.

Any comments regarding which test I should do is very much appreciated. I'm not sure I understand the differences between them all.

Thanks,

Chantalle

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Hi Kaylee - I keep screwing up on here and adding to end of posts instead of starting a new topic - hope I have it right this time...

Was wondering if you told your doctor (or showed him the results) from Enterolab and what his response was. Did he accept the tests as valid? Was there any way to have it covered on our insurance? Also - what made you take that route anyway? I'm just wondering. It's interesting to hear a perspective from another Canadian as we are dealing in a different way with our medical community.

Chantalle

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Hi Chantalle,

the short answer is no, I haven't spoken to the doctor - my son's pediatrician - about the EnteroLab results.

The longer answer involves my reactions to being very unhappy with this doctor's non-involvement in helping us figure out what on earth was wrong with our son. By the time the idea of "official" blood testing came up, I had already gotten the whole family gluten free on a hunch because I had done some reading and was beside myself with worry. In other words, I rushed us into action before knowing you were supposed to still be consuming gluten to have accurate test results. To cut a long story short (ish), a different pediatrician ordered the antigliadin tests, which came back negative. In the meantime, the gluten-free diet had done its work - and very good work it was! I still hankered after a clearer diagnosis, though. I hoped to know if the problems were likely to be transitory or life-long (I've heard many people can outgrow childhood wheat allergies). Since by that time there was no way I was putting my son back on gluten for the purposes of testing (his reactions to even trace amounts are SEVERE) and since his result on the antigliadin IgA was almost 0 and I wondered about IgA deficiency, I figured that the gene test could at lesast help rule celiac out, even if we couldn't get closer to an actual diagnosis. (I realize I don't know for a fact he is IgA deficient, but the EnteroLab tests are expensive and I hated the idea they might be inaccurate simply due to a possible IgA deficiency).

I'm definitely not saying I made the right decisions! You have to realize the choices came on the heels of over 15 months of very, very little sleep and a very, very strong desire to DO something to help my baby.

I'm glad I have the gene test results. They suggest we not get our hopes up about reintroducing gluten any time soon, and I definitely prefer to know this. I am seeking to change pediatricians right now (not easy here), but I will pass on the info about my son's having the main celiac gene to whomever I see at the next medical visit.

I know you are in a very different situation and I'm sorry I don't have more relevant info to pass on to you. I cannot say how well, or not, EnteroLab testing will be viewed in Canada as I have no experience of this. But, if you choose to test through EnteroLab it will certainly provide YOU with another useful piece of the puzzle, however your doctor responds.

Best,

Kaylee

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I'm not trying to be impatient or anything, but on their website it said they should have results back by 2-3 weeks.. least by email. And so it's been 3 weeks today, and nothing yet.. maybe I could wait a bit longer, but since I didn't see a phone number on their website, can't call.. and mom said she wouldn't trust a company that didn't list it's phone number.. though it seemed like everyone here has used it, so I thought I'd just ask here how long it took other people to get their results.

Could just take longer than they list, not in freak out mode yet. Though I would like to get off gluten as soon as possible if I should, lol. =)

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Err.. sorry for starting this as a thread then, didn't know where to post it. Thought the pre-section was best, LOL. =)

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I sent my stool lab to enterolabs last week. One gal told me it took 4 weeks to get the results. They have been so back logged lately due to more people requesting the test that I hope it doesn't take longer. Like you I want my answers NOW!!. It will come I'm sure. Hang in there. Hugs, Carol B

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Okay.. was just curious if others had been having a delay. I can wait more or less, been waiting 10 years for a doctor to get things right, but going to a re-union type thing this Saturday, least hoping to, fingers crossed.. and it might be nice to be able to tell people what is wrong.. instead of still not knowing. If that makes sense, LOL. =)

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It makes A LOT of sence. If my test comes back positive I will have a GOOD cry and then give a testimony in church how that after 55 years of searching I FINALLY have an answer. :-) hugs, Carol B

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LOL, well you said it took you 4 weeks to get your results, and my come today, making it exactly 4.

They say I should aviod gluten and casein, can't decide if I wanna though. ;)

(joking)

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I haven't got my results yet. That's just what I was told. Guess I better look at the calendar and mark 4 weeks. I sure wish it would come earlier though. I'm trying so hard to be a good girl (lots still to learn) but it would be easier knowing there was a reason I was doing this. :-) Congrat's on getting your results. Now you have your answer. Hugs, Carol

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OOOPPPSS!! I should have posted this info last week, but I received a reply to my question about 'turnaround' time for Enterolab results from my 'test specimums'. I was told: "Our turn around time is three weeks max. Once we received your specimen it takes about three weeks to get results back. (three weeks including the week we received it.) " by Fidel Ramirez who is the EnteroLab Office Manager/Lab Tech. I assumed shipping by Airborne Express meant Enterolab received my 'specimums' within 2 days. So maybe y'all won't have to wait as long as 4 weeks or maybe I WILL. Whatever the wait, it will be worth it. :D I'll let you know when I receive my results and what those are, since I'll most likely have questions! ;)

BURDEE

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Airborne express is over night I thought. Mine went out on a Wednesday and needed to be there by Thursday. It will be 3 weeks this comming Wednesday for me. they finally took my money out about a week ago so I know they have gotten to mine. But I'm ANXIOUSLY awaiting my results. Just like you! Patience is a virtue. I think I'm lacking it. LOL hugs, Carol B

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Hey Carol:

Your (and others') post(s) about Enterolab on this topic convinced me to try thier diagnostic tests. I'd given up on my own doctor (who was the best one I've found by far in my HMO) who diagnosed me with IBS and gave me the IBS diet sheet recommending more 'whole grains' (gluten) to cope with my symptoms of recurring constipation, excruciating pain, bloating and gas. :o As soon as I realized (from reading a newspaper article and talking to a close friend whose husband has celiac) that celiac caused my lifelong symptoms, I began to avoid gluten and looked for a naturopath. Unfortunately the one I found (covered by my HMO) did NOT recommend blood or biopsy diagnostic tests. However, since I was still struggling with symptoms (probably not avoiding ALL gluten sources), he recommended the 'elimination diet' (avoiding ANYTHING that could possibly cause allergic reactions) rather than just helping me figure out what gluten sources I was still consuming. I was VERY disappointed with that naturopath to say the least. :angry: After that appointment I had been trying to avoid gluten for a week, enough to have a few pain free hours (I was still taking vitamins and using toothpaste containing gluten). So the idea of 'gluten loading' so another doctor could take blood or biopsy tests for gluten was incomprehensible. I couldn't stand another moment of that excruciating pain.

All of your posts about Enterolab gave me hope of finding a definitive, painfree diagnosis (beyond just following the gluten-free diet). At that time I was STILL struggling to eliminate ALL gluten sources. I just recently learned my TOOTHPASTE contained 'trace amounts' of gluten according to their customer service rep. Well 'TRACE' amounts sure zapped me! :angry: Even though following the gluten-free diet gave me pain free hours (and a few whole days :D ), I still had those nagging doubts every time I had a gluten 'slip' about 'was this really celiac' (gluten antibodies)? I wanted some indication how much tissue damage (autoimmune reaction) I had incurred (since I've had symptoms since childhood and excruciating pain for several years). I wanted to know 'genetic susceptibility' to tell my brother. Also I wondered whether I was sensitive to caseine as well as lactose (I already use 'lactaid' to consume dairy). Accordingly, I ordered the complete Enterolab test package with the free milk sensitivity test thrown in. :P

So I want to thank you and everyone who posted here about their Enterolab experiences for sharing their info and impressions. I've never corresponded with such caring people (both Dr. Fine and his office manager/lab tech) before. :rolleyes: I've also never before done such an easy, noninvasive test. :) Airborne Express picked up my 'specimum' on 6/15, so I expect my results early to mid July. In the meantime, I'll focus on gluten 'sleuthing' and writing to all those manufacturers of suspicious products not listed in the CSA product listing guide or on this site. Thanks again for all your help! :D

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Hi Burdee. Good for you. I can tell you that after a lifetime of searching for answers I gave up on doctors about 20 years ago. I have since taken matters into my own hands and done lot's of searching. No one knows your body like you do and that's a fact. Good luck with your test results and your diet. I've been gluten free for almost a month now with no improvement (except my bowel movements are lighter in color and sometimes float). However, I've been told that at my age it could take a few months. That's why I'm anxious for the test results. Hugs, Carol B

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I've been waiting for 4 weeks romorrow for my results from enterolabs. They actually came last Friday but due to yahoo screwing up again they didn't show up in my mail box till today. I am positive for gluten intolerance as well as casein allergy which is a BUMMER. I also carry the gene so I have notified my family. What they do is up to them. The good news is that I didn't show malabsorption which actually suprised me. Time to knuckle down and really learn all this so I can get well. Been gluten-free for 5 weeks with some slip ups I'm sure as I learn. Hugs, Carol B (thanks to everyone for their support)

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I received my Enterolab results this morning--exactly 3 weeks to the day when Airborne Express picked up my 'specimums'. So they were true to their promised 'turn around time'. My results just confirmed what I already knew from my own body's reactions: antibodies and autoimmune response to gluten and cow's milk. I suspected I might have to avoid casein as well as lactose (which I used Lactaid to consume for over 10 years), so I did my own little dairy free test. After 36 hours dairy free, my reaction to 1/4 cup of milk was dramatic enough to convince me. :o Now if I can just recover from these pesky symptoms to determine whether I can tolerate soy milk. :angry: Meanwhile I can finally say I have been officially diagnosed! YAY!!! :D

BURDEE

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Hi Burdee. Glad you got your results. Faster than mine. Funny, I posted my results and the post disappeared. You post yours under mine and there it is. Maybe I'm loosing it. LOL Best of luck on getting well. I'm still working at it.

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