To Test Or Not To Test

[Carie]

I am new to this forum but have been gluten free for nearly 5 years now. Going gluten free has alleviated many of my symptoms although I occasionally have had some random issues (I assume due to cross contamination or some undiscovered intolerance). I would really love to have an official diagnosis so that I don't feel like this is all in my head, although deep down I know better. I think the diagnosis is more or less my way of validating my intolerance to family members who are still after 5 years trying to test me. All that I have read states that tests are inconclusive in the state that I'm in (5yrs. gluten-free), and I feel like it's a gigantic waste of time and money to try an get a diagnosis. I feel damned if I do and damned if I don't (pardon my expression). Any suggestions on effective tests that don't require me to ingest gluten? I'm reading that Enterolab has had some mixed results (not sure which I should believe), although my maternal aunt completed one of their panels and learned that she is in fact gluten intolerant as well as carrying two of the genes that predispose her to Celiac. Her results are making me wonder is mine would be similar although after reading through the forums I'm wondering if Enterolab's results are even valid. I'm extremely confused by all of the mixed info and not sure if I should even bother testing since living a gluten-free lifestyle seems to make a world of difference.

[mushroom]

Welcome to the board.

I am not sure from reading your post whether you are considering testing because of your own doubts, or to prove to others that you are not just making this up. I think this is important to define, because if you are happy with your self diagnosis then it really doesn't matter what anyone else thinks. But if you have doubts that gluten is really your problem, you can always do a gluten challenge/ But I gather that you find this thought abhorrent, so why are you doubting this diagnosis now??

Of course there is no medical testing other than the genetic which could help confirm the diagnosis at this stage, and after five years I don't think even Enterolab's tests would register on the antibodies left in you system - they do linger longer in the stool, but I believe five years is a big ask. If you had a DQ2 or DQ8 gene, that would be an indicator although not definitive. So just what are you trying to prove, and to whom, is the question I would ask.

I would also add that many of us do have other things that we are intolerant to and I don't know if you have problems on a continuing basis on just occasionally when they could be attributed to cc. You could try keeping a food journal if these problems are quite frequent and see if you can track them down, if they appear to be another intolerance.

Apart from that all I can offer is to determine in your own mind why you need this diagnosis now. That might help you determine whether and how to explore it.

[ravenwoodglass]

I am sorry your family is giving you such a hard time. To get a diagnosis at this point you will need to do a challenge for at least 2 to 3 months to redamage yourself enough for any chance of an accurate blood test or biopsy. You might even end up with a false negative even after all that pain. You could use Enterolab for genetic testing but after 5 years it is really doubtful that your antibody levels would see be high enough to be detected unless you are often getting cross contamination, and a lot of it.

If you are still having a lot of issues you may have another intolerance. Soy and casien are the most common ones for us. Or you could just be getting cross contaminated frequently by food, food prep or toiletries with gluten. Also if your significant other is a gluten eater and doesn't brush their teeth before an open mouth kiss that can get you.

I do wish there was a test that could be done without the challenge here in the states. Hopefully they will eventually adopt the mucosal challenge where a gluten suppository or swab is used and then a biopsy is done about 4 hours later on the area to check for the antibodies but that test is not used yet in the US so here your only option is the food challenge.

I'm sorry your having to go through this. Your in a tough spot. Would it perhaps help to have them visit here and get some information and answers to whatever questions they have?

[LivesIntheSun]

Hello,

All I can say is that I'm in the exact same position and I feel for you!

I've been gluten free for 4 years now and its transformed my life. It has NOT been easy with certain friends and family members (see my post on 'other people's reacions' in the 'coping with celiac' forum).

I would dearly love to have an official diagnosis to please those in the family who seem to think that my own day in day out experience counts for less than the opinion of the self same doctors who told me that they didn't know how to help me any further, to go away and deal with being ill.

For me, doing a gluten challenge would be like brutally whipping myself to please doctors and doubters, and I personally believe that it would be quite dangerous. And as you say, I might not get the results I expect anyway.

I wish I had got properly tested when the nutritionist first mentioned it, but then I was saw her precisely because I had reached the end of what the NHS could offer me, I took her advice and got on with my life. It is only now that I am really appreciating the gravity of my situation- the nutritionist told me she suspected I was celiac and I gave up gluten and recovered under my own steam. But I didn't have the help and support that I really could have used, and I wasn't aware of the potential consequences of not taking the diet seriously enough. Over time I have realisd just how very very sensitive I am to gluten and I'm getting educated and getting serious- I've decided that I have to get handle on this and behave like a proper celiac, for the sake of my whole future. I've had too many accidental glutenings which set me back considerably, and I can't go on like this.

I have come to the conclusion that I am going to have to be very very strong and true to myself, I can't see another path. Thankfully my parents are totally behind me. It is almost like an exercise in self-esteem. The self-esteem to be different from other people, to ask annoying questions in restaurants (and not necessarily believe the answers), to graciously refuse food hospitably offered , to do whatever it takes to be well, even if it irritates some people.

Nonetheless I'm going to pay to get the genetic test, and if there was a test I could do without having to challenge I'd do it in a flash.

[ravenwoodglass]

  On 1/6/2011 at 4:37 PM, LivesIntheSun said:

Hello,

All I can say is that I'm in the exact same position and I feel for you!

I've been gluten free for 4 years now and its transformed my life. It has NOT been easy with certain friends and family members (see my post on 'other people's reacions' in the 'coping with celiac' forum).

I would dearly love to have an official diagnosis to please those in the family who seem to think that my own day in day out experience counts for less than the opinion of the self same doctors who told me that they didn't know how to help me any further, to go away and deal with being ill.

For me, doing a gluten challenge would be like brutally whipping myself to please doctors and doubters, and I personally believe that it would be quite dangerous. And as you say, I might not get the results I expect anyway.

I wish I had got properly tested when the nutritionist first mentioned it, but then I was saw her precisely because I had reached the end of what the NHS could offer me, I took her advice and got on with my life. It is only now that I am really appreciating the gravity of my situation- the nutritionist told me she suspected I was celiac and I gave up gluten and recovered under my own steam. But I didn't have the help and support that I really could have used, and I wasn't aware of the potential consequences of not taking the diet seriously enough. Over time I have realisd just how very very sensitive I am to gluten and I'm getting educated and getting serious- I've decided that I have to get handle on this and behave like a proper celiac, for the sake of my whole future. I've had too many accidental glutenings which set me back considerably, and I can't go on like this.

I have come to the conclusion that I am going to have to be very very strong and true to myself, I can't see another path. Thankfully my parents are totally behind me. It is almost like an exercise in self-esteem. The self-esteem to be different from other people, to ask annoying questions in restaurants (and not necessarily believe the answers), to graciously refuse food hospitably offered , to do whatever it takes to be well, even if it irritates some people.

Nonetheless I'm going to pay to get the genetic test, and if there was a test I could do without having to challenge I'd do it in a flash.

I am glad you found the answer and know you need to be gluten free. One thing you need to keep in mind is that a lot of times they only test for 2 of the up to 27 genes associated with celiac. If it turns out that you don't have DQ2 or DQ8 do not take that as 'proof' that you are doing the wrong thing.