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New Diagnosis


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#1 pattywacky

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Posted 06 February 2004 - 12:20 PM

Hello

I have been having alot of medical problems lately. I have been sick for over 2 months, most doctors thought I have chronic fatigue syndorme. I have had every blood test taken and one of the things that was odd was a antigliadin antibody panel. My doctor said it doesn't necessarily mean I have celiac but on both the IGA and IGG I tested moderate to strong positive 38H. I know you have to have a biopsy to confirm, but I have been on a wheat free gluten free diet for 6 weeks. I am getting better but not sure if it is because of the diet or all the nutritional supplements I have been taking.

I don't relish having the biopsy done and understand you have to start eating wheat again. Also, my Mom was told she had celiac a few years ago by a skin doctor because of an itching rash she had. She has been on the diet for 2 years and no more rash. So, my question is can I rely only on the IGG and IGA test? Is there ever a false positive on these tests?



Thanks for your help.
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#2 gf4life

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Posted 06 February 2004 - 01:49 PM

Hi Patty,

Some doctors will tell you that they get many false positives, but they are wrong. You are more likely to get a false negative in regards to both the blood test and the biopsy. What a doctor refers to as a fasle positive is a positive blood test followed by a negative biopsy. There are many reasons for a false negative in the biopsy. First, your diet. If you have not been eating much or any gluten in a while this can affect it. Some people need to consume a lot of gluten over a long period of time in order to show enough damage. And the amount of damage is different for everyone. Some have no damage, but lots of symptoms and others have a lot of damage and few (or no) symptoms. Then when the test is performed, the doctor has to (by chance) take a tissue sample from a portion of the intestine that does show damage, since the damage can be very spotty, and then the lab has to have very skilled and knowledgable doctors adn lab techs working there, and very few know what to look for with the tissue samples. They want to see total damage of the villi, but even a little bend in the tips of the villi is Celiac Disease. Most are not current in their education of Celiacs.

Here is my opinion. I have just been through two months of consuming more gluten every day than I had ever consumed in a week, in preparation of the biopsy. I feel like I did way more damage to myself than I should ever have had to do, but I wanted accurate results. I still won't get the results back for another week, but there is even a chance that it will be negative. I know I have celiac disease, since I have the gene, and I tested positive in the antibody stool testing. My children are being tested now, and they most likely have it too. Your mother has celiac disease, and it is hereditary. You are positive on the antibody test, and you feel better off gluten. I would not recommend hurting yourself further for the biopsy, but if you feel you need confirmation, you could check out Enterolab , they offer a stool test for antibodies, and a gene test for celiac disease. I would recommend the gene test, since you already know you are producing antibodies. The gene test will confirm that you carry at least one of the genes known to be responsible for Celiac Disease. These are HLA-DQ2 and HLA-DQ8. I used them for my testing, before the biopsy, since my original blood tests came back negative and my doctors refused further testing. After I recieved my diagnosis through Enterolab my doctor agreed to the biopsy. I have my own personal reasons for needing the biopsy, but unless you feel you need it, it is not necessary. Not every doctor will accept the Enterolab tests, since they are fairly new and it takes a while for the medical field to catch up to knew technology, but it isn't really for the doctor it is for you and your own peace of mind. Dr. Fine is a Celiac himself and he started Enterolab for the purpose of reaching the public and making testing more readily available to them, since the medical field has been letting too many Celiacs fall through the cracks, so to speak.

I hope I have helped answer some of your queastions. Feel free to e-mail me or just post here if you have any more. And I am glad you (and your mom) are feeling better on the diet.

God bless,
Mariann :D
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~West Coast-Central California~

Mariann, gluten intolerant and mother of 3 gluten intolerant children


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