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Is A Dna Test Worth While?

kthies2

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kthies2 Apprentice
kthies2
Posted

I have been off of gluten for some time but really want to know if I have celiac disease. I can't bare the thought of adding it back into my diet in the quantities suggested for a positive test. Can anyone tell me if the DNA testing is worth the money, effort, and help it lends? I wonder if it really tells you anything much. Sounds confusing from the other discussions I have read. Will it really help me in understanding if I may have Celiac Disease? What do you recommend I do? I am a 32 yr old female and I want to protect my body from the damage of gluten if needed but don't want to be misdiagnosing myself. Thoughts?

Much appreciate all the help!!!!!!

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sandsurfgirl Collaborator
sandsurfgirl
Posted

Are you talking about Enterolab? It's a tough call. It's expensive and then there are people on the board who have followed all the recommendations and not gotten better. I am new here but I went back and read lots and lots of posts and threads about it. I'm confused at this point.

There is controversy about the methods and I have my doubts. I haven't done it because I'm unsure and the cost is high. I feel like it has a celiac positive bent and I can't be sure if the results are skewed that way. I worry that everybody who get it done gets diagnosed with celiac, know what I mean?

It's such a personal decision. You have to decide whether you believe in those methods and you will accept the diagnosis as valid. I feel like since I have doubts at this point, whatever diagnosis I get, I will doubt so it's not worth the money to me. If I find more information later that relieves those doubts I will get it done.

There was a time that they thought the world was flat and all. There was a time when they thought there was no such thing as germs too. It may be that that type of testing is the cutting edge and in a few years it will be THE way to test. It certainly is a lot easier than biopsies and filling yourself with gluten to get an iffy blood test.

Why are you going on and off the diet? Did you feel better on the diet and did symptoms resolve? In the end, it's going to come down to that anyway. If going on gluten again to get a diagnosis will make you so ill that you can't bear the thought of it, then I think you have the answer. Who cares if it's celiac, gluten intolerance or whatever. You need the diet if gluten makes you sick.

kthies2 Apprentice
kthies2
Posted
  • Author

Hey thanks for the reply and suggestions. i went off gluten to see if I would feel better and back on because my doc seems to doubt that it is celiac disease. He says it may "just be ibs" which scares me because that seems to be the dark horseman of diagnosis. No cure and no way to ease symptoms (booooo). If it is IBS i'd rather be eating gluten and at least enjoying a slice of pizza once in a while. However, if not, I really want to remove it so I'll feel better. I do think I have felt better without the gluten but who knows if its just the waves of IBS as it comes and goes. I was hoping for a medical diagnosis.

Anyone else out there have thoughts on the DNA testing and if its worth it? Will it just confuse me more?

VioletBlue Contributor
VioletBlue
Posted

It was worth it for me. BUT, and this is a big one, DNA does not prove or disprove a diagnosis of Celiac Disease. Some people with the certified 100% Celiac genes may never develop Celiac Disease. Some people with genes that are classified as gluten intolerant ONLY genes do develop Celiac Disease. Something appears to trigger the genes and without that trigger celiac disease may never take place regardless of which genes you have. This DNA science thing is far from perfect and really cannot be used to diagnose with.

For me it was worth it. It told me I had a double copy of what is considered a gluten intolerant gene. I was diagnosed with a textbook case of Celiac Disease. Go figure. Researching my DNA results allowed me to understand a lot of what I've experienced in the last twenty years. They are learning more about how specific genes effect people every day and it can be one more piece of the puzzle of understanding your own body.

And can I just say the whole IBS or IBD diagnosis thing is pure junk. I hate that they're calling a symptom of a larger problem a disease. They do that because they know they have drugs and that more drugs are in the pipeline to "treat" IBS. They can sell you those drugs by calling IBS a disease. They KNOW there's nothing they can sell you if you're diagnosed with Celiac Disease. It's all about money and big pharma and not much about the health and welfare of individuals.

Hey thanks for the reply and suggestions. i went off gluten to see if I would feel better and back on because my doc seems to doubt that it is celiac disease. He says it may "just be ibs" which scares me because that seems to be the dark horseman of diagnosis. No cure and no way to ease symptoms (booooo). If it is IBS i'd rather be eating gluten and at least enjoying a slice of pizza once in a while. However, if not, I really want to remove it so I'll feel better. I do think I have felt better without the gluten but who knows if its just the waves of IBS as it comes and goes. I was hoping for a medical diagnosis.

Anyone else out there have thoughts on the DNA testing and if its worth it? Will it just confuse me more?

sandsurfgirl Collaborator
sandsurfgirl
Posted

I one thousand percent agree about IBS. I do not believe there is such a thing as IBS. I call it "I don't know so I'll give you a line of B.S." It's a fake diagnosis because they don't know what is really wrong and don't care to find out. After 40 years of suffering from gastric problems and many misdiagnoses including IBS, I'm very cynical (and bitter but that's another thread. LOL)

I believe that IBS is always caused by something and those somethings are often foods. Not always gluten, but some food is causing it. Since there is no drug cure for a food intolerance, allergy or whatever, they don't bother. I'm sure there are other things that cause IBS too, but once again, the docs don't bother. Why in the world would bowels become irritable for no reason??? It makes no sense.

I think if you want a medical diagnosis before committing to the gluten free life, then go back on gluten and find another doctor. Get more tests until you get an answer. Read enough stories on here and you'll find that most American docs know jack diddly squat about celiac and food intolerances. So you have to keep looking until you find someone that can help you get answers. Personally I wouldn't take going gluten free lightly or do it just to see if it worked. It's a pain in the butt and if I could find another way, I would take it in a heartbeat.

Oh and I think I'm confusing DNA testing with what Enterolab does, so sorry if my previous post has wrong info. I'm new to this diagnosis myself and I'm sorting it all out too.

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