Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Enterolab - Gluten Stool Test - Were Your Results Accurate?

Evangeline

Recommended Posts

Evangeline Explorer
Evangeline
Posted

If you used EnteroLab for the gluten-sensitivity stool test, were you satisfied with the results?

Did the results ever say negative when you knew you had Celiac Disease or gluten-sensitivity?

I plan on doing this test. I've already had a blood test and it was negative. I heard that a stool test is more sensitive.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Midwifemama5 Newbie
Midwifemama5
Posted

Well I'm new to all of these, but my results say I have some fairly extensive malabsorption, which I believe to be true. But all the other tests were negative, so it makes it more confusing to me, is there another reason for it? Is it leaky gut?

I'm still trying to figure out my genes and what it means (see my post further down, if anyone can add to Nora's posts, I would greatly appreciate it)...It looks like I'm a 7 and 5, but then it seems that I'm also a 3 and 1, not sure if I understand that or what the implications are.

I want to get my kids tested, I have one who tested posted on a skin test to wheat (IGE) so it would be interesting to see how that corresponds to the genes.

I've been doing searches over the last week (with all the snow, I'm not doing much else) but find it hard to search for the specific genes, the engine says I can't search like that.

elle's mom Contributor
elle's mom
Posted

If you used EnteroLab for the gluten-sensitivity stool test, were you satisfied with the results?

Did the results ever say negative when you knew you had Celiac Disease or gluten-sensitivity?

I plan on doing this test. I've already had a blood test and it was negative. I heard that a stool test is more sensitive.

Yes, I was satisfied with the enterolab results even though I had tested negative by blood test. This is the first time I had used enterolab, so no I had never gotten a negative result from them. Yes, I have heard that the stool test is much more sensitive and accurate than the blood test that is why I did it.

Lisa Mentor
Lisa
Posted

Yes, I have heard that the stool test is much more sensitive and accurate than the blood test that is why I did it.

Please note that Enterolabs can not and does not diagnose for Celiac Disease. Stool testing, at this time is not an accepted form of diagnosis regarding Celiac. They can test for gluten sensitivity, but then most, already suspect a gluten/food sensitivity in contacting Enterolabs.

Here is some additional information on Genetic Testing for Celiac Disease:

https://www.celiac.com/articles/21567/1/Ten-Facts-About-Celiac-Disease-Genetic-Testing/Page1.html

Evangeline Explorer
Evangeline
Posted
  • Author

Please note that Enterolabs can not and does not diagnose for Celiac Disease. Stool testing, at this time is not an accepted form of diagnosis regarding Celiac. They can test for gluten sensitivity, but then most, already suspect a gluten/food sensitivity in contacting Enterolabs.

Here is some additional information on Genetic Testing for Celiac Disease:

https://www.celiac.com/articles/21567/1/Ten-Facts-About-Celiac-Disease-Genetic-Testing/Page1.html

Hmm, then what is an accepted form to diagnose Celiac Disease/gluten-sensitivity? I already had two negative blood tests. I've read the biopsy gives negative results for people with severe Celiac Disease. Is the genetic test the best way to assume one has Celiac Disease?

Lisa Mentor
Lisa
Posted

Hmm, then what is an accepted form to diagnose Celiac Disease/gluten-sensitivity? I already had two negative blood tests. I've read the biopsy gives negative results for people with severe Celiac Disease. Is the genetic test the best way to assume one has Celiac Disease?

Unfortunately, there is no perfect method of diagnosis. Serologic Blood Panel, Endoscopy/Biopsy, in combination with a positive dietary response, can be diagnostic.

Many times, these methods fail to pinpoint a severe sensitivity, and some turn to Enterolabs. A gene test will not tell you that you have Celiac, but it can indicate and increased risk of developing Celiac. I believe, it's 70% of the people with the Dq2 Dq8 genes will never develop Celiac. It can also tell you that you genetically cannot develop the autoimmune Celiac Disease if you do not carry the specific genes. So again, gene testing can only be a piece of the puzzle.

Many people here are self diagnosed and found that compliance with the diet is good enough for them. I can empathize with the quest for answers, though.

hpymomof3 Rookie
hpymomof3
Posted

My daughter tested positive with an 11 through Enterolab but she has not had any improvement in the 4 months that she has been off of gluten. Her only symptom has been severe insomnia. She has never had GI symptoms I'm really starting to question whether or not she is truly sensitive to gluten. Is there another way that we can find out?

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Midwifemama5 Newbie
Midwifemama5
Posted

I think that's a hard situation....if you aren't experiencing symptoms, then how do you know if it's gluten? We are facing the same issues, we don't have the classical symptoms. I have tried convincing the kids to go gluten free, we tried it for about 30 days and no one thought it make a difference for them. Now, long term, it might reduce lots of things, but then again, it might now...so without a positive biopsy or blood work, how do you know? Enterolabs seems to think that all the genes can cause sensitivity or intolerance except DQ4, so I am not sure that's a help at all....

Unless it comes back DQ2 and 8, it seems that it's hit or miss...then what to do? If it can take 1=2 years to see improvement for some symptoms, that's an awfully long time to be on a restrictive diet with no answers. And there are so many other things that could be contributing like corn, dairy, food colorings, MSG, how does one differentiate?

I was hoping to be able to search these boards and get more definitive answers from people who have my gene types, but I am learning that it doesn't seem to matter so much what gene types you have, but whether you improve on the diet. And trying to manage 5 kids and myself on a gluten free diet for two years is going to be so stressful, I'm not sure I want to try that without more definitive proof.

I'm still confused about my particular gene types and haven't been able to really get straightforward, easy to understand answers in the literature, much work needs to be done there....

I considered testing all the kids, but the cost is ridiculous and may not tell us anything new....the blood work has been all negative and one daughter had a biopsy that was negative...so I'm not sure what to think...

Lisa Mentor
Lisa
Posted

I think that's a hard situation....if you aren't experiencing symptoms, then how do you know if it's gluten? We are facing the same issues, we don't have the classical symptoms. I have tried convincing the kids to go gluten free, we tried it for about 30 days and no one thought it make a difference for them. Now, long term, it might reduce lots of things, but then again, it might now...so without a positive biopsy or blood work, how do you know? Enterolabs seems to think that all the genes can cause sensitivity or intolerance except DQ4, so I am not sure that's a help at all....

Unless it comes back DQ2 and 8, it seems that it's hit or miss...then what to do? If it can take 1=2 years to see improvement for some symptoms, that's an awfully long time to be on a restrictive diet with no answers. And there are so many other things that could be contributing like corn, dairy, food colorings, MSG, how does one differentiate?

I was hoping to be able to search these boards and get more definitive answers from people who have my gene types, but I am learning that it doesn't seem to matter so much what gene types you have, but whether you improve on the diet. And trying to manage 5 kids and myself on a gluten free diet for two years is going to be so stressful, I'm not sure I want to try that without more definitive proof.

I'm still confused about my particular gene types and haven't been able to really get straightforward, easy to understand answers in the literature, much work needs to be done there....

I considered testing all the kids, but the cost is ridiculous and may not tell us anything new....the blood work has been all negative and one daughter had a biopsy that was negative...so I'm not sure what to think...

I don't know the age of your children, but I would be willing to bet that you can cook daily meals totally gluten free, and no one would know the difference. If you need assistance doing that, the Baking, Recipe Thread has many suggestions.

Most meals can be cooked gluten free, and a substitution needs to be made for bread and pasta. I really is pretty easy, once you get the hang of it.

Your gene testing cannot tell you if you have Celiac. It can only tell you that you might be an increased risk...that's all.

Sometimes the diet is an epiphany to some. If it works, you know there is an issue of some level. If it does not work, there are places that can test for food sensitivities. Tackle one issue at a time.

Midwifemama5 Newbie
Midwifemama5
Posted

Thanks for the suggestions....I made up a weeks worth of menus tonight, that wasn't too difficult. But the problem is that all but one are school age, so I need to have total support and cooperation on their parts because they have school lunches, treats at school, birthday parties, sleepovers, boy scout activities, etc. And all of these events have gluten. I came up with a list of breakfasts, treats, snacks, etc. that are gluten free for the house, but it's all for nothing if they disregard the diet outside the home.

I am afraid that I'll go to the expense and trouble to make our house gluten free only to have them eating gluten on almost a daily basis outside the home.

That's why I'm searching for some answers about my gene test results, Nora was able to help me, but I still have questions and I'm not sure if there just aren't any answers...

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      129,887
    • Most Online (within 30 mins)
      7,748
    BradL
    Newest Member
    BradL
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Probably celiac but also confused

      By trents · Posted

      Lot's of folks would trade places with you with regard to the unintentional weight loss. Seriously, though, I would be concerned about vitamin and mineral depletion due to malabsorption in the small bowel. One thing you can do now to address that which will not jeopardize the accuracy of further testing for celiac disease would be to start taking some high potency vitamin and mineral supplements. Make sure they are all gluten free if you will continue to use them - after diagnosis, that is. Wheat starch is sometimes used as a filler in pills. A multivitamin may not be potent enough. So, I would go for a B-complex, magnesium glycinate (the form of magnesium is important for good absorption and to prevent a laxative effect), zinc picolinate, and D3 (around 5000IU daily). These are supplements we routinely recommend on this forum to newly diagnosed celiacs and in view of your dramatic weight loss it would likely be appropriate for you as well. It often takes around 2 years for the villous lining of the small bowel to fully heal after going gluten free and until then, nutrient absorption will be compromised. The small bowel is the section of the intestines where all of our nutrition is taken up. Keep us posted.
    • terrymouse
      Probably celiac but also confused

      By terrymouse · Posted

      I'm 5'2" so it's weight I could afford to lose. I guess what's concerning is that it's not on purpose, I haven't been active because I don't have much energy, and it's been steadily going down since I started keeping track of it. So I'm not too worried about where I'm at right now, but it's something I'm keeping an eye on.
    • trents
      Probably celiac but also confused

      By trents · Posted

      A classic case of more than one medical problem going on at a time. We often forget that can happen. Are you concerned about your weight loss? Is your current weight too thin for your height, gender and general build?
    • terrymouse
      Probably celiac but also confused

      By terrymouse · Posted

      Thanks for clarifying! I'll put the gluten free thing on hold then. In late december last year I suddenly started having digestive issues I never had before. My stomach started feeling tight most of the time, I got full very quickly, little to no appetite, constipation, I started to feel ill after eating - sometimes a stomach ache, sometimes nauseous, or lightheaded, or heart beating fast. Some things worse than others, I started avoiding fatty foods in general because they made me throw up . I haven't had issues with food like this before, so this is all new to me. I started losing weight because eating was such a chore. I hadn't considered it could be celiac, but my GP added it to the list of things to test for and then referred me to the GI specialist when the results came back positive. They also found a large gallstone, which was causing me pain in the pit of my stomach, so I had my gallbladder removed in march. The pain is gone but otherwise everything else, the tightness and sensitivity and lack of appetite remains an issue, and I'm still losing weight. I was around 200 lb in december, right now I'm 152 lb. 
    • trents
      Virus, celiac disease or both?

      By trents · Posted

      @Shining My Light, I am not a doctor or a trained medical professional of any kind. However, I was a hospital chaplain for many years and sat in on countless numbers of medical team meetings with doctors and nurses discussing the medical issues of their patients as well as tests administered and interventions applied. What I can tell you is that many diseases can only be diagnosed by running a battery of tests coming at the problem from different angles. It is normal to not have all the tests give a positive confirmation for a given disease. But rather, a diagnosis is arrived at by looking at what the balance of the test results from all angles suggest. This may especially be true of autoimmune conditions. You need to also understand that the degree and number of vitamin and mineral deficiencies and symptomology depends on a number of factors. For instance: 1. How many "celiac genes" are involved? Homozygous or heterozygous? and which genes? DQ2?, DQ8? or both? 2. How long ago was the onset of the celiac disease? How long has it been acting on the body? 10 months or 10 years? That will make a huge difference. 3. How much gluten has the person been accustomed to consuming since onset of celiac disease? The more they consume, the more damage you would expect. 4. What is the age of the person? Younger people have bodies that are more resilient than older people and can fight against disease more effectively. 5. What other health conditions is their immune system being tasked to deal with? 6. What is their general state of vigor? Some people just have stronger constitutions than others.
×
×
  • Create New...