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What Are The Proper Tests Including Genetic Testing

clnewberry1

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clnewberry1 Contributor
clnewberry1
Posted

I am just wondering what the proper tests are for Celiac/gluten intolerance. I have read that gluten intolerance is the early stages of Celiac so I am just wondering.

I know there are Antibody blood tests and a biospy - have had both. However I have read that some people have had genetic testing - what is this? Is this something a Western Medicine doctor can test - ie covered by insurance. Or is this something you can get tested through an Alternative Medicine doctor/Natropathic doctor?

Thanks,

Crystal

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Mother of Jibril Enthusiast
Mother of Jibril
Posted

Hi Crystal,

I had genetic testing done. A doctor can order it, but a lot won't. I paid for mine out of my own pocket. One important thing to note... it can't give you a diagnosis of celiac (or any other disease, for that matter). It just tells you what you're "predisposed" to. In my case, this really explained a lot of things in my family... diabetes, lupus, sinus problems, etc... I was also able to convince my mom to get tested (with a blood test) and she was diagnosed with celiac disease at age 61.

clnewberry1 Contributor
clnewberry1
Posted
  • Author

I am little bit confused about the whole thing.

May I ask - you said your Mom was diagnosed at age 61. Did she always have symptoms (what were they) and she just thought it was something else or did she develop Celiac over time? I guess I am thinking if you have it then would you always have it, not like heart diease where if you don't eat healthy and take care of yourself you develop it?

I am also confused because so far all tests have come back negative. So what is wrong with me then? Is gluten intolerance forever like Celiac? If gluten intolerance develops over time like Celiac for example you can heal yourself say over time and then add gluten back in. If you don't have an obvious reaction but over time your stomach gets inflamed and then you start having problems again but so much time has passed you don't know if it's gluten or something else.

Sorry if it seems like a rant. I just wish it were more black and white. This is this and that is that. Does that make sense?

Thanks

Crystal

Mother of Jibril Enthusiast
Mother of Jibril
Posted

Confusion is normal ;) And there is a lot of gray area...

My mom has had a lot of health problems... endometriosis, arthritis, fibromyalgia, diabetes, high blood pressure, chronic fatigue, migraines, etc... Some of these are known to be more common in people with celiac disease. So... maybe she had it all along. Hard to say. Nobody thought to check! What a lot of people (including some doctors) don't realize is that celiac can affect your whole body, not just your intestines. It can take YEARS to get a diagnosis.

Sometimes people are diagnosed as children, but it can take a long time for your symptoms to develop or for antibodies to build up to the point that you have a positive test. In fact, ranges for the tests are set high to correlate with obvious damage to the villi. I've read examples on this forum where people had a negative blood test and a positive endoscopy! False negatives are pretty common.

There are plenty of people on this board who are self-diagnosed, including me. It's quite possible that you do have a problem with gluten, whether that means celiac, an allergy, or some other disorder. It sounds like you've tried the gluten-free diet... how did you feel?

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