My Enterolab Results Are In....

[JerryK]

Hey everyone, my results are in from Enterolab. Here's what Dr. Fine has to say...

Gluten Sensitivity Stool Test

Fecal Antigliadin IgA 42 (Normal Range <10 Units)

Tissue Transglutaminase Stool Test

Fecal Antitissue Transglutaminase IgA 20 Units (Normal Range <10 Units)

Interpretation of Fecal Antigliadin IgA: Intestinal antigliadin IgA antibody was elevated, indicating that you have active dietary gluten sensitivity. For optimal health, resolution of symptoms (if you have them), and prevention of small intestinal damage and malnutrition, osteoporosis, and damage to other tissues (like nerves, brain, joints, muscles, thyroid, pancreas, other glands, skin, liver, spleen, among others), it is recommended that you follow a strict and permanent gluten free diet. As gluten sensitivity is a genetic syndrome, you may want to have your relatives screened as well.

Interpretation of Fecal Antitissue Transglutaminase IgA: You have an autoimmune reaction to the human enzyme tissue transglutaminase, secondary to dietary gluten sensitivity.

I guess I shouldn't be surprised by this, but I am. How seriously do I take it? Do I dare go approach my HMO and tell them this private lab called Enterolab says I have Gluten Sensitivity? Any thoughts on this? How high are the results of these labs, compared to what "normal" is.

Thanks, Jerry

[ENF]

Hi,

Those numbers are pretty high - even for people like me with 2 gluten intolerance genes, positive blood work and a biopsy-confirmed Celiac diagnosis.

The only benefit that I would think you would get from telling your HMO about this is a reimbursement for the cost of Enterolab testing, having further work with a gastroenterologist and/or nutritionist - or for any other health problems that are a result of the gluten sensitivity/intolerance.

Good luck.

Edit: My enteorlab results were Fecal Antigliadin IgA 21 (Normal Range <10 Units), Fecal Antitissue Transglutaminase IgA 15 Units (Normal Range <10 Units). I'd been gluten-free for a year and a half when I got tested by Enterolab - this was considerably after my inititial standard biopsy/blood test Celiac diagnosis. The blood test antibody numbers went down, a few months after going gluten-free, but the Enterolab's test results still have elevated numbers - which I was told is normal for Celiac, even if you've been gluten-free for a long time and the blood numbers are in the normal (negative) range.

[AndreaB]

Jerry,

I'm not sure where the numbers fall for those who would test positive by blood and how that would correlate to the intestinal tract.

If you didn't have gene testing done you don't know if you have a celiac gene but you already have an autoimmune response going on so it is still best to leave gluten behind. All of my family's numbers were low but we all have a celiac gene (or two), so we went gluten free.

The longer you are on gluten the more damage you can cause....even if it's not in the intestinal tract.

[JerryK]

Hmmm, I was thinking that my results were going to be borderline or inconclusive. These are clearly much more elevated than I expected. I guess I need to decide to go gluten-free now or wait just long enough to see my HMO doctor and have them give me a blood test.

Surprisingly, I've not had that many symptoms since sending off for the test. Just a couple episodes.

Anyone know if there is a correlation between how much above normal the numbers are and the degree of which you "have it"? Thanks, Jerry

[ENF]

Hmmm, I was thinking that my results were going to be borderline or inconclusive. These are clearly much more elevated than I expected. I guess I need to decide to go gluten-free now or wait just long enough to see my HMO doctor and have them give me a blood test.

Surprisingly, I've not had that many symptoms since sending off for the test. Just a couple episodes.

Anyone know if there is a correlation between how much above normal the numbers are and the degree of which you "have it"? Thanks, Jerry

If you can get an appointment soon, I'd get the blood test and, if you can, an endoscope as well - just so you can compare how you're doing after a year or two on a gluten-free diet. If you can't do this in a hurry, just go gluten-free and get tested anyway in the future. I've had two endoscope exams for celiac, both before and after going gluten-free, and they both showed damage - but everybody is different. As I said the blood tests were normal after a couple of months of being gluten-free, but Enterolab's results were still slightly elevated even after 1 1/2 years gluten-free.

[JerryK]

If you can get an appointment soon, I'd get the blood test and, if you can, an endoscope as well - just so you can compare how you're doing after a year or two on a gluten-free diet. If you can't do this in a hurry, just go gluten-free and get tested anyway in the future. I've had two endoscope exams for celiac, both before and after going gluten-free, and they both showed damage - but everybody is different. As I said the blood tests were normal after a couple of months of being gluten-free, but Enterolab's results were still slightly elevated even after 1 1/2 years gluten-free.

I'm seriously more confused then ever. I was not expecting this.

[ENF]

I'm seriously more confused then ever. I was not expecting this.

It can take two or three years for the average adult Celiac's intestines to heal and, in rare cases, they may never recover. You may have high numbers, but no intestinal damage, and there's no way of knowing unless you get the biopsy. Another way is to have the malabsorbtion test from Enterolab, but that can be misleading due to causes other than gluten.

Of course, as many people here will attest to, going gluten-free is essential when your tests are positive from Enterolab - even if you're asymptomatic. I have "classic" Celiac - so I know what you are going through.

Again, you don't have to get more tests, but if they're available I'd say go for it. There are psychological benefits when you find out that your strict adherence to the diet has paid off. If there is not an improvement after a while of being gluten-free, then the diet has to be examined and possibly changed.

[JerryK]

Of course, as many people here will attest to, going gluten-free is essential when your tests are positive from Enterolab - even if you're asymptomatic. I have "classic" Celiac - so I know what you are going through.

I guess this is the meat of my confusion. How do I KNOW that going gluten free is essential? Honestly I feel fine, I just get the runs when I eat too much pizza. Just playing devil's advocate here, but this is a huge huge lifestyle commitment! With due respect to Enterolab, there is a lot of debate in the medical community as to the validity of stool testing methods. I really really want to understand what you folks think about this and why I should believe what this guy has to say, instead of wondering if he's selling me a diagnoses. Sigh, this has confused me even more than I was before. It would have been so simple if the testing had been negative...

[Jestgar]

Are you saying that the only way you'd be completely gluten free is if your intestine is being destroyed by gluten?

[jerseyangel]

Hi Jerry,

The way I see it, you obviously have a problem with gluten. You've gone off and on it over the past months you've been checking in here. Whether or not that will have some bearing on further testing--I couldn't tell you. The intestine begins to heal as soon as you go off gluten, so you have to take that into consideration. To re-damage, you need to be eating a substantial amount of gluten for several months straight.

Only you can decide if further testing is worth it--many here take the Enterolab results and go gluten-free and never look back. You have to do what you are comfortable with--maybe you feel that you would always wonder what the conventional tests would have revealed.

I had neither the Celiac Panel or the Enterolab stool testing done, so I don't know how one would compare the damage done/blood levels/stool levels. I was diagnosed through biopsy, positive dietary response and later had the Enterolab Gene Testing, mostly to satisfy my curiousity and to know for my sons.

In my own experience, it's not unusual to go for periods of time where I seemed to feel better. It wasn't until the last 6 months before I was diagnosed that I got terribly sick, lost weight and had to stop working. It's unfortunate that it had to get to that point before it was considered.

Whatever you decide to do, I wish you luck I'll be very interested to know which way you end up going with this.

[JerryK]

Are you saying that the only way you'd be completely gluten free is if your intestine is being destroyed by gluten?

No, I'm saying, I'm scared and confused. Pooping in a bowl, sending it to a lab, then getting an e-mail telling you never to eat gluten again is somewhat daunting and impersonal. Especially given the fact that my HMO will probably laugh at me if I show them my test results... I had been thinking it was all in my head.... I guess I need time to let this sink in.

[ENF]

I guess this is the meat of my confusion. How do I KNOW that going gluten free is essential? Honestly I feel fine, I just get the runs when I eat too much pizza. Just playing devil's advocate here, but this is a huge huge lifestyle commitment! With due respect to Enterolab, there is a lot of debate in the medical community as to the validity of stool testing methods. I really really want to understand what you folks think about this and why I should believe what this guy has to say, instead of wondering if he's selling me a diagnoses. Sigh, this has confused me even more than I was before. It would have been so simple if the testing had been negative...

Maybe you need a second opinon.

So, get the biopsy and/or blood tests if you think that you need a more convincing diagnosis. It's very important, even if you have to pay to come to New York for a visit to the Columbia Celiac Center - or you could go to another qualified place that's closer. People on this board know where other good ones are located. There is a good chance that you'll find a gastroenterologist right in your area that can do it. An easier way, though, may be to just go on the gluten-free diet and see how you feel. Changing my diet was the best thing that ever happened to me, health-wise.

Your health may be at stake, and that's the most valuable thing you'll ever have.

I believe that Celiac disease, which you may have, is a biological, evolutionary advancement for gluten-sensitive people because it "warns" you that the gluten does not belong in your body. Somebody on this message board once called it a "gift" of nature, and I agree.

One thing I am 100% sure of: I will never, ever deliberatly "cheat" on the diet by eating gluten.

P.S. I also had tons of dental work done - probably due to the enamel problems from Celiac.

[Jestgar]

No, I'm saying, I'm scared and confused. Pooping in a bowl, sending it to a lab, then getting an e-mail telling you never to eat gluten again is somewhat daunting and impersonal. Especially given the fact that my HMO will probably laugh at me if I show them my test results... I had been thinking it was all in my head.... I guess I need time to let this sink in.

Ok, I see that you are exploring all questions all at once. Don't lose sight of the fact that you are still in charge of your body. You are choosing what is best for you.

I know I'll get a lot of daggers thrown at me for saying this, but it's not the end of the world if you go gluten-lite (really lite). I can't imagine willingly eating gluten, but that's because it makes me feel bad immediately. I totally understand how hard it would be to dive into this lifestyle full bore if you didn't feel all that bad. Yes, you have the potential to do long term damage to your body, but that possibility doesn't seem immediate for you.

You are considering giving up gluten to feel better, but there is also an aspect of feeling emotionally better if you know you have the option to cheat. Sometimes your physical health wins out, and sometimes your emotional health.

Hopefully over time you'll reach a point where not eating gluten satisfies both needs, but if you aren't there yet, don't feel bad. Just take care of yourself in whatever way is best.

[JerryK]

And with all due respect to Enterolab, how do I know they are not bogus? How do I know that they are not just telling folks what they want to hear?(although in my case, I certainly didn't want to hear this!)

Any thoughts on that. Anyone ever test low or negative?

If I sound upset, I'm so sorry...it's just my personal frustration. jerry

[jerseyangel]

And with all due respect to Enterolab, how do I know they are not bogus? How do I know that they are not just telling folks what they want to hear?(although in my case, I certainly didn't want to hear this!)

Any thoughts on that. Anyone ever test low or negative?

If I sound upset, I'm so sorry...it's just my personal frustration. jerry

You have every right to be upset and confused. At best, this can be a difficult disease to pin down. We are more than happy to talk all of this out with you--and with all of the combined experiences we have here, something is bound to resonate with you.

There are people on here who either tested negative, or had a child who did. I'm sure whan they see this, they'll weigh in with their opinions

[Jestgar]

They have nothing to gain by telling you you're positive. They don't sell supplements or diet plans or drugs.

[ENF]

In my wife's case, she had no celiac gastro symptoms, but took the Enterolab tests just to shut me up. The results were positive, and she felt the same way about it that you do - in the beginning. After going gluten free, she started having noticeable heath benefits - the most dramatic thing was that her body shape has noticeably improved. She is now a believer in the gluten-free diet.

Gluten is probably not good for anybody - so get with the program, because you

[CarlaB]

Any thoughts on that. Anyone ever test low or negative?

My daughter tested negative. My score was 60 and 42 respectively. I also got 30 on casein, but after six months off casein, I challenged it and it seems to make NO difference whatsoever if I eat it or not.

I know I do NOT have celiac genes. I also have Lyme Disease, which I've read can cause an autoimmune response in the body, so I'm guessing my gluten intolerance is more a symptom of that than anything. I do not cheat as far as gluten goes, when I do, I feel bad.

You might try cutting it out for a couple months, then challenge it, like I did the casein.

[GlutenWrangler]

#1 - The numbers on the Enterolab's results do not indicate how badly you have it, except on the fecal fat malabsorption test. The numbers just indicate the amount of antibodies present at the moment of testing.

#2 - Enterolab is not bogus. They devote their resources to researching celiac disease/gluten intolerance, and to helping those who have gone through hell trying to figure out what is wrong. If you thought they were bogus, why spend the money on the test?

#3 - Your results indicate that you cannot eat gluten. It is up to you to decide whether you want to take your health seriously, or damage your intestine to the point of possible malignancy, osteoporosis, etc.

If you don't take the Enterolab results seriously, get another opinion. But keep in mind that doctors are notoriously AWFUL at dignosing celiac disease. Good luck

-Brian

[lonewolf]

And with all due respect to Enterolab, how do I know they are not bogus? How do I know that they are not just telling folks what they want to hear?(although in my case, I certainly didn't want to hear this!)

Any thoughts on that. Anyone ever test low or negative?

My son tested negative through Enterolab, so I know for sure that they don't tell everyone that they're positive.

You just need to decide what YOU want to do. You've been wondering about this for months and you come across as a very intelligent person. Why do you want to wait until you're miserably sick to make a change?

[AndreaB]

And with all due respect to Enterolab, how do I know they are not bogus? How do I know that they are not just telling folks what they want to hear?(although in my case, I certainly didn't want to hear this!)

Any thoughts on that. Anyone ever test low or negative?

If I sound upset, I'm so sorry...it's just my personal frustration. jerry

Jerry,

I have my numbers posted in my sig. My family tested low (I had been very gluten light for 1 1/2 months before enterolab. My husband is the only one who didn't test positive but he has 2 celiac genes. He scored a 4 I think. We all have celiac genes so we went gluten free before further damage was done.

[JerryK]

#3 - Your results indicate that you cannot eat gluten. It is up to you to decide whether you want to take your health seriously, or damage your intestine to the point of possible malignancy, osteoporosis, etc.

If you don't take the Enterolab results seriously, get another opinion. But keep in mind that doctors are notoriously AWFUL at dignosing celiac disease. Good luck

-Brian

Believe me I AM taking the results seriously, that's why I'm asking the hard questions. I want to know what's at stake. I need to know that I've done due diligence. This not only affects me, but it affects my family and friends too. There are people here who are a lot more experienced at this than I am. I'm seeking opinions and information. This is a life altering event and it's going to take a day or to to sink in.

I want to thank everyone for your replies. Jerry

[sunshinen]

Jerry, I highly recommend going to your HMO and getting more tests done. In essence you have paid for one opinion, and that should be enough to get them to pay for the gold standard testing. By the time I had learned about celiac I had been gluten free for too long to do the biopsi and I regret that I didn't have one. A negative won't necessarily tell you much, but you can learn a lot from a positive result. (Especially if you are having a hard time trusting the Enterolab results.)

Whatever you do testing wise and even if the results come back normal, I would still highly recommend that you give the gluten free diet a significant shot. Most of us were at your stage at some point in the game, where we had symptoms that had us looking for answers, but were still tolerable. But for many of us (who did not get the right answer soon enough) the symptoms escalated slowly (or more rapidly for some) to the point of becoming severe and disabling. Celiac is considered a life-threatening disease, and the sooner you can catch it the better off you are.

But more than all that is How Much Better You Can Feel. Chances are that you don't even realize many of the symptoms. They come on so slowly that we tend to think that they are normal. It's not until you have been on the diet for a while and begin to feel what normal really is that you realize how bad you were. It is a life-changing diet... but in the best kind of way!

[JerryK]

Jerry, I highly recommend going to your HMO and getting more tests done. In essence you have paid for one opinion, and that should be enough to get them to pay for the gold standard testing. By the time I had learned about celiac I had been gluten free for too long to do the biopsi and I regret that I didn't have one. A negative won't necessarily tell you much, but you can learn a lot from a positive result. (Especially if you are having a hard time trusting the Enterolab results.)

Thanks everyone for your responses. I think what I will do now is go to my HMO and give them the opportunity to blood test me. Then I will go gluten-free to the very best of my ability. With my symptoms and Enterolab results, plus the potential impacts if I ignore it, I will forever be nervous about eating gluten anyway.....

[Nancym]

I guess this is the meat of my confusion. How do I KNOW that going gluten free is essential? Honestly I feel fine, I just get the runs when I eat too much pizza. Just playing devil's advocate here, but this is a huge huge lifestyle commitment! With due respect to Enterolab, there is a lot of debate in the medical community as to the validity of stool testing methods. I really really want to understand what you folks think about this and why I should believe what this guy has to say, instead of wondering if he's selling me a diagnoses. Sigh, this has confused me even more than I was before. It would have been so simple if the testing had been negative...

Jerry, I seem to recall a series of posts where you had a number of issues that pretty much went away when you stayed off the gluten. Now you're trying to back away from it. Sounds like a bad case of denial...

I hope at least some of you remember me. Thanksgiving pushed me over the edge. Three days of foamy D later, I placed my order for Enterolab testing. Anyone that's followed my posts knows this is a big step for me, as I've been very much in denial.

It's been a while since I signed on. I stop thinking about the whole celiac thing, until I have a bout of

symptoms. Usually things aren't too bad, and I've subconsciously adjusted my diet and tend to shy away

of things that I know contain Gluten. This last weekend however, I was bad. I ate a ton of Chinese food

on Friday night. Had toast and an English Muffin at my mom’s house on Saturday. I ate with reckless

abandon. Monday thru Wednesday, I was sick as a dog. I had diarrhea, I hurt all over like I had the flu and

had terrible heartburn. The symptoms themselves are enough to make me be good. I know I need to go

to the doctor and follow up on this, but I just keep putting it off.

Interestingly my mom mentioned something interesting the other day. She said when you were a baby, Oreo’s made you sick. Hmmm, what do you think of that? Sort of ties everything together for me. Anyway, go ahead and bash me for not going and getting a diagnoses, I deserve it. jerry

Hope everyone is doing well.

Wanted to give an update about the cruise and how I'm feeling. The cruise went very well and I only

got sick one time for several hours. This was the morning after I'd had four pieces of bread with dinner blink.gif

One of the things I notice gluten-free is that I'm much more alert. Interesting that the AD I'm on could never do what 3 days of Gluten Free have done for me...give me more energy and a better attitude.

Feeling fine this morning.....everything ok.

Bam 10:45 stomach rumbling hits and here it comes.

Only thing I can think is it's something in Chinese food that's doing this.

I seem to get sicker from eating Chinese food than anything else. I'm guessing

it's pretty pervasive in this cuisine...

Here's the question. If I have Celiac would it make my stomach tender so that

many things might make me sick...i.e. not just Gluten Intolerant but have trouble

digesting other things too?....

There's a lot more of them out there, do a search on your user name and read a bit. You've been trying to duck this thing for months.

Here's the thing. Do you want to go through life feeling ill, worn down, getting sicker and sicker for what reason? Because wheat tastes good? Because it is embarassing or inconvient and unmanly to have to fuss over food?

We've got so few things in life really we have complete control over, but this isn't one of them.