Entrolabs Question

[joyjoy]

Hi all

[burdee]

Hi all

[TeknoLen]

I did Enterolab "Panel A" (which includes anti-gliadin) last month and the report will not tell you if you are Celiac. You will get numerical scores for each antigen in the panel and an interpretation narrative of where your score places you in the range and what course of action you should consider taking. Blood tests and intestinal biopsy seem to be most authoritative if you are looking for a definitive Celiac yes/no diagnosis but the less invasive Enterolab test is probably good enough if you are just trying to confirm a sensitivity...

[joyjoy]

thanks so much!

I was really hoping they could diagnose celiac because I don't want a biopsy. and well my dr won't order one anyhow because my blood tests didn't show anything. the site kinda goes over my head, but I'll give it another read

[Skylark]

An inconclusive blood test is VERY different from negative if gluten-free makes you feel better. Before you pay for Enterolab, can you get the test name, the result, and the normal range and post them here? A borderline blood test result and a huge response to the diet is plenty of evidence for celiac - it's hard to get positive blood tests.

Enterolab testing has never been validated. Anti-gliadin is pretty much useless. Enterolab's own data shows that it has almost no predictive value as to who will feel better off gluten. Your response to the diet is a better answer. The Enterolab anti-TTG is more useful, since it's autoimmune and shouldn't be in your stool. It isn't specific for celiac becasue it can appear in other inflammatory bowel diseases, BUT with your response to the diet it would probably mean celiac.

[burdee]

My doctor concluded I had celiac after seeing 3 positive results from my Enterolab panel: gliadin antibodies, tissue transglutaminase and dna test, as well as years of my physical symptoms, which she had misdiagnosed as 'IBS'. Any of those tests alone may not be useful, but all 3 together convinced both my doctor and 2 naturopaths. However, many docs are believe that they need to see villi damage with an endoscopy, if/when the doc takes enough biopsies to get the correct spot in 25 feet of small intestine, after we get a positive blood test, which depends on enough gut damage for those gliadin antibodies, which come from the gut, to leak into the blood. I didn't really care what my doc thought, after she misdiagnosed me for 20 years. I just wanted to know for myself whether I had gluten intolerance as well as casein allergy. So I bought the test package which included casein antibodies, and got the other tests for TtG, malabsorption and DNA. Even if no doctors accepted my results, I was satisfied, because I did NOT want to return to eating gluten and damage my body even further just to get a test for extreme intestinal damage.

[joyjoy]

so just my symptoms alone can indicate celiac? one of my drs thinks so, but doesn't feel the need to run tests since I don't want the biopsy. I'm not sure I can get the results from my dr from the test I had before, but it's worth a shot!

[Skylark]

so just my symptoms alone can indicate celiac? one of my drs thinks so, but doesn't feel the need to run tests since I don't want the biopsy. I'm not sure I can get the results from my dr from the test I had before, but it's worth a shot!

If you are in the US, you are legally entitled to see the test results. Don't take no for an answer.

Resolution of symptoms on the diet and reappearance of symptoms with a challenge is diagnostic for gluten intolerance. It's the ONLY reliable way to diagnose it too. Anti-gliadin testing is hit and miss. People can get really sick from gluten intolerance even without celiac autoimmunity. As you've noticed it doesn't take much gluten either. There is growing evidence that gluten intolerance is linked to thyroid problems too, so it's not something to take lightly.

Don't listen to people telling you to eat something that you know is poison to your body. They are just confused. If traces of gluten make you depressed you obviously need to avoid it. I was never even tested. I just say I'm celiac. Gluten makes me so ill that it's worth saying whatever I need in order to avoid it.

For celiac, you do need to find evidence of autoimmunity like TTG antibodies or damage on biopsy. Some doctors won't diagnose without both blood and biopsy; others will take symptoms into account and diagnose on blood+symptoms or biopsy+symptoms.

[joyjoy]

that makes sense

[nora-n]

the Enterolab tests were developed to find microscopic colitis caused by gluten, not celiac.

But they can tell you if you are gluten sensitive without microscopic colitis too.

They only test IgA type antibodies so if you have low total IgA the results will be low.

Now the antibodies hang around a while, and the Enterolab tests are so sensitive that they can still be positive after a while off gluten.

But first maybe find out what your ordinary tests were.

[joyjoy]

but if they're testing for antibodies, isn't the test going to be more accurate if I have gluten in my digestive tract when I take the test?

I just don't want to test negative and always wonder if it's because my system was all cleaned out. I don't mind eating a bit of gluten if it will help in the long run.

[Skylark]

Enterolab claims that there is enough trace gluten in a typical diet that they can detect antibodies. Perhaps you should call or write and ask if a challenge makes the testing more sensitive? Seems like it would.

[joyjoy]

well I got it back today.... negative. My anti-gliadin was 9

i really dont get it, but thats 2 negative tests now. i dont understand why I feel so lousy with gluten if it's not showing up on tests. but maybe it is in fact something else, cause I still have lousy moments on a gluten free diet... not very often though

[llama3]

well I got it back today.... negative. My anti-gliadin was 9

i really dont get it, but thats 2 negative tests now. i dont understand why I feel so lousy with gluten if it's not showing up on tests. but maybe it is in fact something else, cause I still have lousy moments on a gluten free diet... not very often though

Go with your own body. That's what I have decided, or at least keep trying to decide (because I, too, will have these periods where I think "What if this is all some big mistake I'm making?" - Then I eat gluten again and get to enjoy the consequences).

I honestly don't know why our society is so fixated on medical tests as the gold standard of everything. I have been to so many doctors - for different things - who have told me that my symptoms were in my head or were my fault and other people told me the same thing, and I eventually did come to believe I was a hypochondriac. (Look up "gaslighting.") Many of the symptoms I was experiencing have now been traced to clear medical causes - in one case, with a very unambiguous X-ray - but it took years and many doctors' visits and negative tests. I now believe that my body is a better gauge of these things than the medical community. I wish I could convince the public at large of this truth.

[Lisa]

Open Original Shared Link

Confusing the picture further are private labs that offer tests of stool or saliva that they say can definitively diagnose gluten sensitivity. Experts say that such tests haven't been validated and shouldn't be relied on for a diagnosis. "If anyone claims they have a test that is specifically for gluten sensitivity, there is no such thing, though I'm not ruling it out in the future," says Dr. Fasano.

This is an excellent article, please read it in entirety.

[joyjoy]

so i really just cant trust any test? the thing with me is that I'm very much like what llama3 was saying... without a diagnosis, i start to think its all in my head, and then i eat whatever i want and within a day or two, i'm miserable for about a month.

if you cant trust any test, what do you do?

[llama3]

so i really just cant trust any test? the thing with me is that I'm very much like what llama3 was saying... without a diagnosis, i start to think its all in my head, and then i eat whatever i want and within a day or two, i'm miserable for about a month.

if you cant trust any test, what do you do?

An elimination diet and a gluten challenge is a test. Just because you don't get a piece of paper from your doctor does not mean it is not a test. Trust your body.

[Lisa]

An elimination diet and a gluten challenge is a test. Just because you don't get a piece of paper from your doctor does not mean it is not a test. Trust your body.

I agree

[joyjoy]

you're right... but what do you tell people? people ask if i have celiac, and I dont have a straight answer... when I give the big explination that i'm probably just gluten intolerant people tend to pester me to eat it anyhow, saying one bite wont kill me...

maybe i just need to be more assertive! I've done gluten elimination and reintroduced it numerous times and every time it's obvious I cant handle the stuff

[Lisa]

Just tell them that you have a gluten intolerance. When you eat gluten it makes you very ill. 'nuff said!

And if that's not good enough, get new friends. Personally, I have found that not too many people really care. That's okay with me though. I just get on about my life.

[Skylark]

you're right... but what do you tell people? people ask if i have celiac, and I dont have a straight answer... when I give the big explination that i'm probably just gluten intolerant people tend to pester me to eat it anyhow, saying one bite wont kill me...

maybe i just need to be more assertive! I've done gluten elimination and reintroduced it numerous times and every time it's obvious I cant handle the stuff

I say I'm celiac. It's simpler. The medical details and whether I'm celiac, gluten-intolerant, or allergic to wheat/rye/barley is nobody's damn business. All they need to know is that gluten makes me sick and I need to take some precautions to avoid it. Some people are so incredibly nosy and rude that you have to make things up to satisfy them. I find the nosy/rude ones are the same ones that try to push gluten on you if you don't say that you're celiac. (And sometimes if you do.) Say whatever you need to get safe food.

My close family knows that I was never tested, and that I'm most likely celiac (I think I used to have DH) but figured it out on my own and wasn't tested.

[mushroom]

It is really not a big deal doing whatever is necessary to protect your health. You know what you need to do - depending on the reactions of your family and friends you are either celiac, gluten makes you sick, you are gluten intolerant - whatever it takes to make them take you seriously and leave you alone and respect your decision. It's actually none of their business how you eat, as long as you don't make it their business, i.e., you have to handle it yourself, not make it their responsibility.

Eventually, family and those who love you will respect your choices and needs. I was away this week visiting with extended family in another city and it was announced we were going to a french restaurant for dinner (arranged by my neice). I phoned the restaurant and they said "95% of our menu is gluten free." I said, "What about the sauces?" They said, "Made from corn starch." I had a wonderful boeuf bourguinon ("hold the potatoes") They (my neices) 'get it' even though their mother (or maybe because their mother) is my SID - sister-in-denial. My other sister and hubs are both gluten freers. And we had a duo of guitar and tenor sax serenading us with jazz for dinner, too. Wonderful meal, felt like Left Bank Paris, no hassle! Of course, they had chosen a gluten free place for us.....

P.S. It was not always this way....