All Tests Seem To Be Negative Now What

[ADevoto]

Hi Everyone,

I got the tests results back and everything is negative except for the fact that my 9 year old daughter has DQ2. Her Pediatrican is like "all those genetic tests do is scare people - it is nothing." I had the test done at Stanford and they said that it is nothing to worry about - just watch her. Everyone also says don't bother with the diet - too difficult - no reason to go on it. I took her today for a lactose test and it appeared that it was going to come back negative. I won't know until Monday but the nurse acted really surprised that she had no symptoms during the test. I am beginning to feel stupid. I just don't know what else to atribute her terrible gas and fatigue to. She does present very healthy - no weight problems or skin problems.

I am thinking about having her do the test through the Enterolab but maybe I should just stop.

[tarnalberry]

Did a dietary change make any difference to her symptoms?

[taneil]

ADevoto,

If your daughter has the DQ2 Gene don't stress out about it. However, if she is having symptoms there is a very good likelyhood that she has Gluten Intolerance/Celiac Desease. If she had the blood tests and they were negative, that is not unusual to have negative blood and yet still have Gluten Intolerance. If she had the biopsy and it was negative she could still have Gluten Intolerance according to Dr. Fine who runs Enterolab. The Villi are not atrophied, which equals Celiac Desease, and thus a negative biopsy. However, the villi could still react to Gluten when it is present, thus still have gluten intolerance. I would recommend Enterolab if she is having symptoms. However tarnalberry has a good point also. If dietary change make a difference that could be your answer also. Doctor's are not all knowing and personally I think they are necessary for somethings, but we know our bodies and Mothers have a sense given by God to know if something is wrong regardless of what Doctor's say.

Since you already have the gene test, you can get tested with Enterolab for between $100 and $150.

[ADevoto]

Thanks for the replies. We have not tried any diet changes yet. I wanted to get the test results back from the Lactose tests first. Her pediatrician thought that we should just treat her symptoms - constipation (by cleaning her out and) and fatigue by giving her Melatonin. I still have this nagging feeling thats finr but it isn't treating the main underlined problem. Anyway, I think I will try the diet and get the enterlab test done. I am going to have her brother and I tested as well because I have bad IBS and he has other symptoms that could be.

[Ruth]

Adevoto.

Has your daughter had a biopsy? My blood tests were 100% normal. My biopsy was 100% abnormal!

My diagnosis was delayed because of my blood work being normal. While the blood test does help with the diagnosis of some with celiac, a negative blood testdoes not rule out the disease completely.

Ruth

[flagbabyds]

I would defenitly try the diet! also the blood isn't a 100% test, the diet is.

Also, completely off the subject... do you live in Stanford? If you do i would love to talk to you.

So try the diet, also she can have the gene but it just hasn't gotten bad enough to show in the blood test.

[ADevoto]

Thanks again for the additional replies. The doctors at Stanford do not want to do a bioposy (sp). So, I guess I will see what the lactose test shows on Monday and then make a plan. Probably will go on diet and get other family members tested.