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I'm reading Wheat Free, Worry Free and wondering if I might have celiac disease. I really dislike dealing with doctors, and feel like they don't know what they're doing most of the time.<br><br>
I was wondering if I could just order a stool sample from a lab on my own. Has anyone done this? Do you think the results are accurate?<br><br>
TIA!
 

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Yes. We used EnteroLab when my son was showing signs of malabsorption. He came back with off-the-charts gluten and dairy sensitivities, and since cutting them out, he's been so much better. Whether the tests are correct or not, it gave us the guidance and discipline we needed to stick with a sometimes daunting diet. It gets easier. That said, I think they are very helpful.<br><br>
They also have a cheek swab for genetic testing, and my whole family carries the genes for celiac disease.<br><br>
EnteroLab, as I understand it, cannot diagnose celiac with a stool test, because the diagnosis is by seeing the destroyed villi in the small intestine. But avoiding gluten has done wonders for my son, his growth, his digestion, and his mood.<br><br>
Good luck to you and I hope you find some answers!<br><br>
Shannon
 

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Discussion Starter #3
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<div>Originally Posted by <strong>tatima</strong> <a href="/community/forum/post/7950659"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">Yes. We used EnteroLab when my son was showing signs of malabsorption.</div>
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Did you do the Gluten Sensitivity Stool and Gene Panel Complete test?<br><br>
My son isn't actually showing signs of celiac disease. He did show up sensitive to milk and wheat (but not gluten) on the IgG tests we had done by our naturopath, so we're avoiding wheat and dairy for a while.<br><br>
But I'm wondering if <i>I</i> may have CD, since I have fertility issues -- basically, I had one or two periods as an adolescent and then nothing after that. My infertility doctor couldn't find anything that would be causing a lack of ovulation. I also just have a feeling that wheat is a problem for me -- I get really stuffy and tired after eating a lot of bread-y products.<br><br>
But of course I want to make sure my son doesn't have it, since it's so common and can cause serious problems, so I want to do us both at the same time.<br><br>
Money is an issue, but I do want to make sure we do the right tests.
 

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Yes. We used EnteroLab when my son was showing signs of malabsorption. He came back with off-the-charts gluten and dairy sensitivities, and since cutting them out, he's been so much better.<br><br>
I'm curious what "signs" your son was showing. Also, how old is he. I've been wondering if my 3yr. old daughter might have a sensitivity to gluten as well as some malabsorption/digestive issues. What improvements did you see in your son? Thanks!!
 

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I used Enterolabs for myself. It was $100 for the stool test for gluten intolerance. It came back positive, and I've been off gluten for 2 weeks now. I've had colitis since I was a teenager, and have always wondered about gluten intolerance, but could never get anyone to take me seriously. Now, I'm trying to figure out the best way to test my sons to see which of them also needs to be gluten-free.<br><br>
Kristin
 

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I don't have a lot of time just now, so I'll try to be brief. Thankfully, my son had very clear signs of malabsorption: diarrhea and very slow growth. In about 2 weeks after going GFCF, the diarrhea stopped. He is now growing quite well, but still a little small for his age, but on the charts. He has always looked healthy. Some kids and adults I know don't have such obvious GI symptoms, and that is when things can get tricky. My son easily self-regulates, at age 5, because he is so uncomfortable when he eats wheat. After a year dairy free, he can now eat dairy without a problem.<br><br>
When we tested with EnteroLab, we did both the stool test and the genetic cheek swab. Each test costs more, of course. But depending on your symptoms, if any, these tests can be a helpful guide. Once my son was so strongly sensistive to gluten and carried the gene for celiac, we all got tested. I tested slight positive for gluten, and I don't have GI symptoms but other wacky stuff. It's been helpful to know. My husband also carries the gene for celiac disease, but no sensitivities.<br><br>
I'll check in later when I have more time. Hope this helps.<br><br>
Best,<br>
Shannon
 

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Discussion Starter #7
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<div>Originally Posted by <strong>2rubies</strong> <a href="/community/forum/post/7956883"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">I used Enterolabs for myself. It was $100 for the stool test for gluten intolerance. It came back positive, and I've been off gluten for 2 weeks now. I've had colitis since I was a teenager, and have always wondered about gluten intolerance, but could never get anyone to take me seriously. Now, I'm trying to figure out the best way to test my sons to see which of them also needs to be gluten-free.<br><br>
Kristin</div>
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I was thinking of just going with the $100 test for me and my son for now. I hate to have to spend more money on down the line if I decide we really need further testing, but money is pretty tight right now.
 

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I have Celiac and so does my 6 yr old, the best test honestly is just to go GF for a couple weeks if your not able to do the antibody testing or biopsy. There's also a posibility of gluten intolerance without having celiac. My 10 mo old has reacted to gluten when I got some on accident so we had the gene testing done on her but she does not carry the gene (I have it) so while she may be intolerant she doesn't have celiac and never will.
 

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I actually just recently came across mention on celiac.com's message board of someone who posts there who does not carry the celiac gene but has been dxs with celiac. All the testing can be so confusing. The best diagnosis is often to just cut out gluten following the celiac guidelines and being really careful and then see what happens. Many people are starting to think that gluten intolerance and celiac are actually the same thing but current testing is only dxs when a person has gotten to a place of extreme damage. The research on celiac is so limited and drs are mostly just not up to date on the current research. Drs are still telling their patients that celiac is very rare and yet there was a study that came out saying 1 in 135 people are celiac (they were testing random people who didn't necessarily display symptoms.)<br><br>
Cheers <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/smile.gif" style="border:0px solid;" title="smile"><br><br>
Heather
 

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i agree - the testing is often not completely conclusive.<br><br>
what is more clear is if you go gluten-free and see an improvement.<br><br>
there was an extensive discussion about the merits of the enterolab testing on the yahoo GFCFNN list.
 

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Thanks for the replies. I've been gluten-free for over a week, and last night and today I felt/feel AWFUL. I haven't changed my diet at all except for not eating gluten -- we always ate a lot of rice-based dinners anyway, and breakfast has been eggs and a smoothie for a while now. DH thinks it's probably just coincident and not related to going gluten-free, but I wonder.<br><br>
Do you think it's possible to detox on a gluten-free diet before feeling better? I mean, I do think I feel *slightly* better in a few ways, but I've also noticed more weird stomach things and now a headache.
 
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