Enerolab

[MELINE]

Hi everyone!

After 1 year of gluten-free diet my new doc and my whole family want me to have an official diagnosis (I just had extreme response to the diet and on the other hand extreme eczema, abdominal pain, nausea, neuropathy and headache when glutened, and based on that my old doc said it was celiac) . I want that too, just for insurance reasons. Here in Greece they tell me I have to eat gluten for 2-3 months to have the test (I don't think I can handle that..)

I read in your posts somthing about a centre for gluten sensitivity that you call it ENTEROLAB and that there is no need to change our diet for their tests.

I know many of you had your tests done there.Could someone please tell me if they are reliable? Are they considered to be good? And i read you say they are too expensive. I saw a price of 99$ in their website. This seems like 1/3 of the price of greek tests.....

I would really appreciate any info.

Thank you all for all your great advices so long.

Meline

[mftnchn]

Enterolab does not claim to diagnose celiac, so it won't get you an official diagnosis though it sounds like your doctor has already given you one. Enterolab says they can pick up gluten sensitivity for up to a year after gluten free.

The gluten challenge is difficult. I feel for you.

[nora-n]

Have you had the local gene test for DQ2 or DQ8? Here in Norway that would be enough for a diagnosis together with a very positive response to a gluten-free diet and the severe symptoms of getting glutened.

My daughter got an official diagnosis after negative tests after being back on gluten for six weeks because of her symtoms off and on gluten. She did not even need the gene test.

I am considering getting the gene test from Enterolab to find out what genes I have, after the local gene test just told me I was negative without any further explanation. And, there have been postings about the DQ8 tests not being very sensitive, but Enterolab pick it up as they do serotyping. It was the rapid DQ2/8 test that failed with this other person here.

The shipping is very expensive from Europe. I emailed Enterolab and they tell me most use Fed Ex so I have to find out what kind of fed ex shipment I have to order. I do not know yet.

nora

[leadmeastray88]

Like another person has already said, Enterolab cannot diagnose Celiac. Only a doctor can do that. It can only detect active dietary gluten sensitivity. I found that the gene testing was quite interesting as well. It' s a good bit of information to know, especially if/when you have children.

If you happen to have the Celiac genes, along with your positive dietary response, your doc may give you a diagnosis based on that. Or maybe he won't.

You obviously feel better gluten free. You know it is not good for you. What will a clinical diagnosis really get you? Other than really really sick again?

I am very confident with my decision to use Enterolab. It only confirmed what I knew already - that gluten is a big no-no for me. My results, along with my positive dietary response, helped me get a Celiac diagnosis. But that is all based on the doctor. Most doctors wand the 'gold standard' diagnosis, meaning positive blood and biopsy. But we all know that is bogus anyway.

Considering how long you've been gluten free, even if you eat it for a couple months straight, your results still may not be accurate.

Whatever you choose, I wish you luck! I know it's hard, but you have many people here to support you!

Best wishes,

Kim

[MELINE]

.mftnchn....so they cannot tell you if you have celiac or not..? then I guess there is not actually a reason for me to have their tests..the gluten challeng is just imimpossible for me....

Nora

I have no idea about the tests you are talking about. .....never heard of them, I'll ask my new doctor.

Kim

thank you for the support. As you know most of the times the diagnosis is not for us but for the rest of the family who just can't believe that there is life without bread...And I also want it for my insurance. Any way, I am NOT going back on gluten. There is just no doubt about it.

Funny thing....one of the useless doctors I have visited in the past said - when I told him that I cannot live 1 day with gluten - that it is not possible to have immediate reactions....He said that only 1% of the patients react in gluten immediately. And the rest of celiacs eat gluten for months before they notice any symptoms....Well....this forum must be a statistical phenomenon....Look how many 1% are posting everyday......(I seriously think about e-mailing him the URL of the forum. Maybe then he will understand that he knows nothing)

[nora-n]

I read several celiac forums, in several countries, and immediate symptoms from gluten are very common, and absolutely not in as few cases as 1%.

I do not have any statistics, though.

Would be interesting if someone has run across such statistics so you have a reference to show to your doctor.

Projectile vomiting , and diarrhea, or constipation, are not uncommon after getting accidentally glutened. I get some constipation followed with some diarrhea. But I was back on a gluten challenge with not so many problems.afterwards I got the feeling back that I could not feel where my feet were, and I also developed this constant burning of the skin again, and I had to up my thyroid meds a lot. All this went away again after some weeks. The terrible fatigue went away after seven months.

The other day i did a search on www.pubmed.com on celiac and India, and it turned up some interesting hits, and I did it because there was someone postg here that the doctors refused to test him for celiac since they said celiac does not exist in Indians. Pubmed said that there is just as much celiac disease there as here, or more. But the doctors are not aware of it..

The gene test is the test for celiac genes, available everywhere I think. enterolab gives you the answer for what beta chain you have, both of them, but often the laboratories just tell you if you are posive for DQ2 or DQ8.

Jut go to the wiki for DQ and DR, and the wiki for DQ2. I would even guess that you get the diagnosis if you are DQ2. If you order that one from enterolab, and if you happen to have any other gene than DQ2 or DQ8, then you can keep it to yourself if you want to.....

If you browse through this folder on this forum, you can get a lot more explanation on the genes if you want to.

The point is, that if you have some other gene than DQ2 or DQ8, you will not likely get a positive biopsy even though you go back on gluten, and it is better not to bother, and just stay off gluten. Those that are gluten sensitive like that, can even get worse symptoms thatn those with ordinary celiac disease, since they instead have damage to lots of other organs systems, including neurological problems.

Like in Dr. Hadjivassilou's patients, about 20% are DQ1 (which are DQ5 and DQ6) and they would not get an official celiac diagnosis despite being very ill from gluten. They have Ttg-6 antibodies.

and , DH patients do not always have the right celiac genes either. They have Ttg-3 antibodies.

nora