Enterolab Testing

[cdog7]

I'm so fed up with the whole idea of how celiac is diagnosed (especially after going through 3 doctors that had no clue about it), so now I'm considering the Enterolab test. I can't stand that I would otherwise have to damage my body on purpose, maybe for years just to get a dx, even when I have all the symptoms and a celiac mother. It's maddening!

Here's my question

[confusedks]

I'm so fed up with the whole idea of how celiac is diagnosed (especially after going through 3 doctors that had no clue about it), so now I'm considering the Enterolab test. I can't stand that I would otherwise have to damage my body on purpose, maybe for years just to get a dx, even when I have all the symptoms and a celiac mother. It's maddening!

Here's my question

[Guest Lore]

Just a work of caution:

I have a friend going through medical school at UCLA who did some research on the enterolab testing for me because I too am curious about getting an accurate test result (for once) and he said that although in theory it makes sense, the doctor who has patented the idea for enterolab testing has never published any of his findings for the public to acknowledge. Although this may not be a factor on whether or not his information is credible, it is something to take into consideration that other people cannot study his official results. Apparently, there was one scholarly journal a few years ago that did a minor study on it and claimed it only worked a small percentage of the time, however, they only had 6 patients try it out. Either way you look at it, the data is not publically available to support the idea. However, it sounds like it could be blossoming soon. The choice is yours, but please consider what sources you're relying on before jumping on board. Good luck!

[confused]

I think it is a good place to start at. Of ocurse if it shows u are highly gluten intolerant and you take away gluten and in an yr, you are still feeling good, then you need to look deeper in what is causing you to feel the way that you do. You could intolerant due to candida, metals, mold, lyme or parasites just to name a few.

i tested threw them and blood test and was positive for both, but i wasnt 100 percent after giving up gluten and casein, so then i had to give up soy. I felt good for awhile then i found out i also had candida and i am now on that diet and feeling awesome.

paula

[aikiducky]

Enterolab doesn't give a celiac diagnosis. Basically what they claim is that anybody who tests positive for gluten intolerance on their test would feel better cutting out gluten. If you already cut out gluten and feel better, you already know that.

Pauliina

[jenrn]

I did the enterolab testing for two reasons after I tested negative on the traditional celiac tests. I wanted to see if I had the genes to see if I could basically rule out celiac forever (although I do know there are some people who have celiac without having the two identified genes). I also wanted to do the tests in case they do become accepted by the medical community down the road. Then I will already have the results. I am really happy I did the enterolab tests because it did identify me as gluten sensitive and also showed that I carry two copies of the DQ2 gene. That was enough for me to go gluten free and the results have been amazing for me.

Jen

[danandbetty1]

Just a work of caution:

I have a friend going through medical school at UCLA who did some research on the enterolab testing for me because I too am curious about getting an accurate test result (for once) and he said that although in theory it makes sense, the doctor who has patented the idea for enterolab testing has never published any of his findings for the public to acknowledge. Although this may not be a factor on whether or not his information is credible, it is something to take into consideration that other people cannot study his official results. Apparently, there was one scholarly journal a few years ago that did a minor study on it and claimed it only worked a small percentage of the time, however, they only had 6 patients try it out. Either way you look at it, the data is not publically available to support the idea. However, it sounds like it could be blossoming soon. The choice is yours, but please consider what sources you're relying on before jumping on board. Good luck!

To me I feel better on the diet so i stay on it. If you read all the questions they ask you to see if you may have it and you say yes, you do. To me the test just confirms you answered the questions correctly. The diet is hard when you are traveling or are in a hurry. You have to change your life to fit the diet. If you feel good on the diet stay on it. Other wise get tested to maybe comfirm you have it. Dan

[Ginsou]

My blood tests for celiac were negative. If I hadn't had the Enterolab tests done, I never would have known that I also have the double genes, and also have a casein and soy problem. I had stopped gluten on my own, and still was in a lot of pain and ended up in the emergency room with no insurance coverage. All their tests were also normal. I had replaced much of my gluten products with soy products, which was making me even sicker. Without those Enterolab tests, I never would have know what the real problem was. The gastro doctor that I will be seeing in August (I have medical coverage then) not only believes in Enterolab, he encourages his patients to have the tests done when the conventional blood tests are negative.

[Gwen B]

My blood tests for celiac were negative. If I hadn't had the Enterolab tests done, I never would have known that I also have the double genes, and also have a casein and soy problem. I had stopped gluten on my own, and still was in a lot of pain and ended up in the emergency room with no insurance coverage. All their tests were also normal. I had replaced much of my gluten products with soy products, which was making me even sicker. Without those Enterolab tests, I never would have know what the real problem was. The gastro doctor that I will be seeing in August (I have medical coverage then) not only believes in Enterolab, he encourages his patients to have the tests done when the conventional blood tests are negative.

This is a good to know. I have just received my results back from Enterolab confirming my sensitivity to gluten, the fat malabsorption test also explains my mild anemia. I have been gluten-free, CF, SF, and can't tolerate Tapioca flour either. These things I worked out for myself because my dr didn't think there was much likelyhood of the disease and would not test me further, since my symptoms when glutened are not terrible, just not pleasant and I was so very tired all the time before now.

However, the numbers will enable me to talk to my family who don't always believe in clearing their crumbs up, and forget not to 'double dip' spoons etc. I also now know that since I carry both gluten sensitive genes that both my kids will need to be aware of possible symptoms and I have more than good reason now to ask the Dr. to test them also for celiac. I also now know that I have inherited these genes from both my parents. My mother already knows she is celiac and has been gluten-free for two years but my father who has 'stomach upsets' several times a year and intermittant lactose intolerance could benefit from testing.

I hope that as more us present information about celiac/gluten intolerance the doctors will get informed and not dismiss the cumalative evidence demonstrating that gluten intolerance is not such a rare thing and avoidance of gluten can prevent other ailments other than villous atrophy.

[home-based-mom]

Apparently, there was one scholarly journal a few years ago that did a minor study on it and claimed it only worked a small percentage of the time, however, they only had 6 patients try it out.

Just curious ~ what did they compare it to to claim that it only worked a small percentage of the time? The conventional blood test that is so often a false negative? The scope that is so often a false negative? What made them decide it only worked a small percentage of the time? Inquiring minds want to know!

[jayhawkmom]

I've had the blood tests and the biopsy. Both were inconclusive, but both suggested that "something" was going on, even if the doctors could not quite put a name to it. I went on the gluten free diet, and have had a terrific dietary response.

I went ahead and did the gene testing for my own benefit, so I could determine whether or not my genes might play into a part of the puzzle, at some point. And, I've discovered that I have a Celiac gene and a gluten intolerance gene. So, being on a gluten-free diet is highly beneficial for me, regardless.

I wish Dr. Fine would publish so that the skeptics would be able to stop being skeptical. =)

[Mom23boys]

I have been going to drs since I was 11 to try and figure out what was wrong with me (I turn 42 this year). Hubby (and his siblings) has had this odd rash all his life and has seen drs but with no real info. They all just want to start giving us an arsenal of pills and not really spending the time to find out what is wrong. If we go to a new dr, they just want to reinvent the wheel. Not a one of them have even been remotely close to what is going on.

Last year we took my oldest to a special needs person who is also certified in nutrition. She suggested a gluten-free trial for him. She also said we looked like we needed it too. I don't know what we look like that cued her in but we did it. Research brought us to that lab. We liked the fact that we could order it and bypass a dr's order. We also liked the fact that we did not have to go back on gluten.

The results we have received the better info from this test than we have from drs. It may not be 100% yes or 100% no but it is much more info than we have had. I know we are on the right track now and it is not in our head as one dr suggested. We have confirmed hubby's genes and his Mom is going to be tested. (She will probably go traditional medical route) I know my two little kids have taken off on a growth binge since we have been 100% gluten-free (just a few weeks). Their chiropractor commented at last visit. Hubby's rash is less severe. Even my skin issues have cleared up. My dyslexic kid has gone on a reading binge. I could go on. For whatever reason gluten has been holding us back.

[jayhawkmom]

I also wanted to add... you do not have to have a diagnosis of Celiac to have the ability to follow a gluten free diet in a hospital setting.

If you are admitted, for whatever reason, simply tell them that you are gluten free. You'll have to examine your food options and scrutinize every little thing to make sure it IS gluten free, but they can't deny you gluten free meals simply because you don't have an official diagnosis.

Diabetics don't have to "prove" they have diabetes, people who need low or no salt menus don't have to prove they have a disease or condition that warrants it. Same with Celiac. Consider a vegetarian... diet is usually choice. Hospitals don't force them to eat meat.

My daughter was hospitalized last summer, we weren't required to have anything in writing or anything for them to follow the diet with her. Granted, she didn't have a lot of choices, but there definitely were gluten-free options for her.

=)

I HTH!

[Mom23boys]

I also wanted to add... you do not have to have a diagnosis of Celiac to have the ability to follow a gluten free diet in a hospital setting.

The hospital food was the only good thing about the hospital I had my first 2 babies in. They made an "issue" specific meal fit for royalty. The chef was the only person there who got it!