Jump to content
  • 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

Can Anyone Tell Me What They Know About Enterolab Testing?


TammyK

Recommended Posts

TammyK Apprentice

Does this lab actually dx Celiac Disease? Or does it merely tell you if you are gluten sensative? I read discussion after discussion about biopsys. Can you find out you have Celiac Disease before your intestines are damaged? Is gluten sensativity merely a precursor Celiac?

Ok, I know that is a string of questions but I really am confused about this. My daughter has had a long time issue with wheat. I switched her to spelt and that lasted a few years until seizures and migraines appeared. Taking her off gluten proved to be the trick. She has no gut issues like bloating, gas, cramps, etc... We did have blood work done for Celiac but that was after she was on the gluten-free diet for a couple of weeks or so. It was negative. I am trying to decide how important further testing at EnteroLab is. If all it will tell me is that she is sensative, then we can just save the money.

What do you think?


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



Celiac.com Sponsor (A8-M):



mftnchn Explorer

Enterolab does not claim to diagnose celiac; it does pick up gluten sensitivty and says that they can do so for up to a year after going gluten-free. Whether gluten sensitivity is a precursor to celiac is a matter of discussion. However, gluten sensitivity seems to occur for more reasons that just celiac. It is particularly hard to digest so if your gut is compromised it can be a problem. Resolving the underlying issue can resolve the gluten sensitivity for some people, but not for celiacs.

Celiac can be asymptomatic, and can have negative blood and biopsies.

Since you are convinced she is better on the gluten-free diet, I wonder what you hope to gain from Enterolab?

TammyK Apprentice
Since you are convinced she is better on the gluten-free diet, I wonder what you hope to gain from Enterolab?

Ok - that makes so much more sense!

As for what can be gained from Enterolab, there is a full panel that includes more than the gluten-sensativity test but a malabsorption test, antibody test, gene test (for Celiac? Anyone know?), milk sensativity and more. Guess I still don't if any well be helpful, except that I feel the gluten-sensative one is unnecessary for me and I know diary purposed problems as well. But malabsorption and gene testing???

I am trying to decide if Celiac should be further considered or if I think it is a gut problem. She did have abdominal cramps and diarrhea her first 1-2 years of life but those did go away with eliminating diary. We have randomly reintroduced diary and she has never went back to any of those symptoms. She had been treated long term for chronic ear infections (antibiotics), having her first set of tubes put in at 6 months old (and several sets since). Then at 6, she was dx with Asthma. It is sounding to me to be the leaky gut thing but then there is the fact that I cannot eat gluten, eggs or oats without itching and rash and in the past few years was dx with 2 autoimmune diseases. That makes me think more Celiac due to the hereditary factor. Ugh... Wish this was easier to figure out.

I don't want to learn in 10 years it was really Celiac after all. Knowing seems important because Celiacs have to be so careful. I have a family of six and do have gluten in the kitchen and all around her. Knowing it was Celiac would mean changing everyone's diet, cleaning up the kithcen, being resolved for the long haul and teaching and preparing her for her adult life - how she will approach her health.

Unfornately it has taken this mama too long to read the writing in the sky. I am just now up to full speed on understanding that it really was gluten all along (not just wheat) and that she never should have been reintroduced to diary. It took seizures and migraines to wake me up. Thank God, our bodies take dramatic means to communicate with us.

Does anyone have any thoughts on this?

fedora Enthusiast

they do a gene test. It is a reliable test that can tell you if she has the main genes for celiac. About 94% of celiacs have on of those two genes. Doctors can order gene testing too that her insurance might cover.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Heatherisle replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      21

      Pain in the right side of abdomen

    2. - Scott Adams replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      how long does it take for the genetic blood test for celiac to come back?

    3. - knitty kitty replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      21

      Pain in the right side of abdomen

    4. - Heatherisle replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      21

      Pain in the right side of abdomen

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,666
    • Most Online (within 30 mins)
      7,748

    S.Aulman
    Newest Member
    S.Aulman
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Heatherisle
      Hi Thanks for your input. Don’t know which exact medication she’s on, keep asking but she keeps forgetting!!! I still think her Vitamin D levels might be low cos she had the back pain and tingling last year( around March /April) and levels were low so she had 3 month course then and it helped. She’s coming home next week (as in to ours) for a long weekend so hopefully some TLC from mum and dad will help!!!    
    • Scott Adams
      Genetic testing for celiac disease (the HLA-DQ2 and HLA-DQ8 genes) usually takes about 3–10 days to come back, depending on the lab your doctor uses, though some places may take up to two weeks. The test itself doesn’t diagnose celiac disease—it only shows whether you carry the genes that make celiac possible. About 30–40% of people have one of these genes, but only a small percentage actually develop celiac disease. However, if the test is negative for both genes, celiac disease becomes extremely unlikely, which is why your doctor mentioned possibly canceling the endoscopy if the result is negative. If it’s positive, it just means celiac remains a possibility and further testing, like a gluten challenge followed by endoscopy, helps confirm it. Since you have an identical twin, it’s definitely useful information to share if the genes are present, because twins share the same genetic risk. It sounds like you found a very thorough GI doctor, which is great, especially since she’s also monitoring nutrients and looking at the whole picture.
    • knitty kitty
      @Heatherisle, You're not a bother at all.   What "Vitamin B medication" is she taking?  Is it just B12 and folate?   All eight B vitamins, Vitamin D and other vitamins and minerals need to be supplemented because the malabsorption of Celiac disease affects all the nutrients.  All the B vitamins work together.  Just supplementing one or two can throw the other B vitamins out of balance causing worsening deficiencies in other B vitamins.  Doctors are undereducated about nutrition.  Heavy sigh. This is worrisome.  These are all symptoms of Gastrointestinal Beriberi caused by Thiamine deficiency.   An Erythrocyte Transketolace Activity Assay needs too be done to check her Thiamine level.  But because this test is so expensive and takes so long for the results to come back, it's much simpler to administer 500 mg Thiamine Hydrochloride several times a day for several days and look for health improvement (WHO recommendation).  Doctors can administer Thiamine Hydrochloride by IV along with a "banana bag" with all the B vitamins in it.  (Riboflavin gives it the yellow color.).  I've experienced vitamin deficiencies which my doctors didn't recognize.  When thiamine and B12 deficiencies started affecting my brain function, my doctors wrote me off as a depressed hypochondriac.  I had Gastrointestinal Beriberi myself.  I took over the counter thiamine hydrochloride at home and had health improvement within an hour.  High doses (500 mg) of Thiamine are needed to "jump start" the body into proper functioning.   Apologies if I was curt.  I get very frustrated because the nutritional deficiencies that occur with Celiac disease are not addressed properly.  All I can do is tell people about what I learned on my Celiac journey.  Have you visited my blog?  Tap on my name, look for pull down menu Activities and go to blog.   I do hope your daughter can get the nutritional support she needs.  I'm very worried.  Please keep us updated!
    • Heatherisle
      Hi  Thank you, will tell her to do that
    • Scott Adams
      I think a key thing here would be to ensure that the prescription(s) she started taking are actually gluten-free, as some contain wheat starch. In the USA we have a site you can check, not sure about the UK, but possibly. You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.