How Important Is Testing?

[Maureen]

I am thoroughly convinced that my daughter has celiac or gluten intolerance. She suffers from depression. If she is off gluten, she is not depressed. When she has gluten, the depression is horrible.

I cannot risk giving her gluten to have her tested. The depression is too awful and I would feel horrible if she did something just so I can know for sure. I have not taken her to see any doctor about this. We have discovered this by trial and error. Is there something I am missing? Should I have her seen by a doctor or just continue on the path we are on?

Thanks,

Maureen

[Carriefaith]

If you do not want her to go back to eating gluten, you could ask your doctor to have a celiac gene test done. If she has the celiac gene and is reacting to gluten, then I think you could safely say that she has celiac disease. If she doesn't have the gene, she could be gluten intolerant.

[marciab]

I'm new here too, but I've been gluten free for 5 months now and I don't want to go back on gluten either just to be tested. AND my GP told me not to bother being tested because even if all the tests are negative, I could still be one of those who feels better on the diet. My doctor diagnosed me as gluten intolerant because I noticed that I get hyper when I have been exposed to gluten, particularly oats.

[CMCM]

I am thoroughly convinced that my daughter has celiac or gluten intolerance. She suffers from depression. If she is off gluten, she is not depressed. When she has gluten, the depression is horrible.

I cannot risk giving her gluten to have her tested. The depression is too awful and I would feel horrible if she did something just so I can know for sure. I have not taken her to see any doctor about this. We have discovered this by trial and error. Is there something I am missing? Should I have her seen by a doctor or just continue on the path we are on?

Thanks,

Maureen

I would really recommend that you get the book "Dangerous Grains" (Amazon). It will really educate you about the whole wheat/gluten connection. One symptom that can be caused by eating gluten is most definitely depression. This book lists 200 conditions that may be connected to gluten and which are either relieved greatly or eliminated by a gluten-free diet.

As for testing, you can get the gene test done from Enterolab and it will at least let you know if she has the gene for either gluten sensitivity, celiac, or both. That test is $149.....they just sent you 2 swab sticks and you wipe them on the inside of each cheek, and send it back. This is the minimum testing you could do just to see what's what.

Since my mother was a diagnosed celiac, I felt I had a strong possibility of having celiac disease too, and I did the complete panel (which included the gene test) for myself to find out more details. But for you, if you aren't aware of celiac disease being in your family, the gene test is a good start and the cheapest way to get some data. Go to Enterolab.com and read all the info, it's very interesting and will possibly help you make a decision about what to do.

I personally did not even attempt to involve a doctor for the simple reason that I didn't see any reason to spend the $$$ with someone who was clueless about celiac etc. Since I had been relatively gluten free for awhile, I figured the blood tests would be useless and I simply did not want to start eating a lot of gluten again just for the tests.

[Maureen]

Thanks! These responses have been helpful. I am not sure if I will do the gene test. We have spent so much $ as it is so far on doctors and psychiatrists. I will give that more thought.

I have read the book Dangerous Grains. It convinced me more than ever that she has celiac. She is doing incredibly well now. I can't believe how much better she is off the gluten. I just want to shout it out to everyone. She has been depressed her whole life. You can't imagine the joy I feel seeing my child laugh and smile again.

[Nancym]

I think the testing most doctors are using is just horrible. Too many false negatives and it only detects the issue when it has progressed extremely far. You're a smart lady for using the ultimate test: a Gluten free diet!

I think having the medical testing or even gene testing done might be important for some people to take the disease seriously. They might think they can cheat and get away with it. But then again... even medically diagnosed celiacs cheat.

[CMCM]

Thanks! These responses have been helpful. I am not sure if I will do the gene test. We have spent so much $ as it is so far on doctors and psychiatrists. I will give that more thought.

I have read the book Dangerous Grains. It convinced me more than ever that she has celiac. She is doing incredibly well now. I can't believe how much better she is off the gluten. I just want to shout it out to everyone. She has been depressed her whole life. You can't imagine the joy I feel seeing my child laugh and smile again.

I have come to believe that the gene testing is actually very important. My mother has celiac. Now I know that I do too. My children have a 50% chance of having the gene as well, but they don't appear to have all the symptoms (yet) although they DO have some suspicious symptoms that fit what I read in Dangerous Grains and other books. My son had a blood test, which the doctor said was negative. So my question now is this: does he just not have a problem now but perhaps it will crop up later when he's older? I want him to know whether or not this is something he needs to consider down the road. Perhaps problems will happen much later in life when I'm not around to point him in the right direction. Remember that in many cases, symptoms are triggered by something, some event physical or otherwise. With the gene test results in hand, your daughter will have a reference point for the future. I'm 56 and have just now this week gotten a definitive diagnosis that I, too, have celiac. Luckily, my 84 year old mom is still here to discuss things with, but had it not been for her, I might never have figured out what was going on with me. My mother nearly died before she was diagnosed 40 years ago....doctors were almost totally clueless then about it....but I always dismissed my own symptoms because I thought you had to lose weight like she did. You have to really seek out information on this, ultimately.

Of course, the diet tells you most of what you need to know. Still, for me, I wanted to be sure it wasn't something else.

Another thing for you to consider: If your daughter has celiac, she got it from either you or your husband. So you or he have the same risk going forward as well.

I intend to get both my kids a gene test because that's a good starting point going forward. It's always good to know your risks.

Carole

[Carriefaith]

Thanks! These responses have been helpful. I am not sure if I will do the gene test. We have spent so much $ as it is so far on doctors and psychiatrists. I will give that more thought.

The good thing about the gene test is that she can have the test done while on a gluten free diet. Therefore, essentially you could wait a few years to get it done. I think starting the gluten free diet would be a good idea if you feel that she has some symptoms of celiac disease or a gluten intolerance.

[Maureen]

Is the gene test accurate?