Genetic Testing

[passionfruit877]

I'm not really getting anywhere with my doctor, who is convinced I have IBS. He knows I am eating gluten free and dairy after doing a food diary, but he says he is hesitant to call what I have "Celiac". He doesn't think I have it. I know I could do the genetic test (it would be nice to have something confirm I am gluten intolerant too), but I am nervous about it. I don't know how accurate it is, and is anyone ever told they don't have it. It seems like this could be swayed so that if you send in the money, they'll tell you what you want to hear. I am not saying this is true, I am just nervous about it. Will my doctor accept the results?

[ravenwoodglass]

  On 1/28/2010 at 9:53 PM, passionfruit877 said:

I'm not really getting anywhere with my doctor, who is convinced I have IBS. He knows I am eating gluten free and dairy after doing a food diary, but he says he is hesitant to call what I have "Celiac". He doesn't think I have it. I know I could do the genetic test (it would be nice to have something confirm I am gluten intolerant too), but I am nervous about it. I don't know how accurate it is, and is anyone ever told they don't have it. It seems like this could be swayed so that if you send in the money, they'll tell you what you want to hear. I am not saying this is true, I am just nervous about it. Will my doctor accept the results?

Genetic testing is a tool but not by itself diagnostic. It can be a part of the diagnostic process but is not conclusive on it's own. How are you feeling on the diet? Are you being strict? Did your doctor do blood tests before you started the diet? What were the results? Have you been accidentally glutened or challenged it? If so what happened? If the diet is helping you a doctors diagnosis is not required to follow it.

Companies don't fudge on the genetic tests, however not all doctors check for all celiac associated genes. Many only check for DQ2 or DQ8 but not the other 7. In the end it is your bodies response to the diet that is most important.

[passionfruit877]

I did not have a blood test. I tried the diet on my own, and when my bloating went down considerably I spoke to my doctor. He seems to think my food problems are caused by IBS (He said "you could eat pizza when you were a teenager couldn't you?") I have cut out dairy but I still get sick when I eat out, and I still have stomach pain sometimes after I eat. Maybe there is something else I am having a problem with? I am just frustrated by the lack of concern I feel doctors have. I know I don't look unhealthy, but at 22 I should not be having so much stomach and bowel trouble. I also saw an allergist who told me I didn't have any wheat or milk allergies, but then had no more answers for me after that. I don't really want to diagnose myself. I thought maybe a gene test would help me be inspired to stay on the diet.

[ravenwoodglass]

  On 1/29/2010 at 12:38 AM, passionfruit877 said:

I did not have a blood test. I tried the diet on my own, and when my bloating went down considerably I spoke to my doctor. He seems to think my food problems are caused by IBS (He said "you could eat pizza when you were a teenager couldn't you?") I have cut out dairy but I still get sick when I eat out, and I still have stomach pain sometimes after I eat. Maybe there is something else I am having a problem with? I am just frustrated by the lack of concern I feel doctors have. I know I don't look unhealthy, but at 22 I should not be having so much stomach and bowel trouble. I also saw an allergist who told me I didn't have any wheat or milk allergies, but then had no more answers for me after that. I don't really want to diagnose myself. I thought maybe a gene test would help me be inspired to stay on the diet.

Your doctor sounds pretty ignorant about celiac. I would opt for Enterolab testing if you can fit it in your budget. They can do the gene tests and also test for antibodies in the stoolfor up to a year after you stop eating gluten so you wouldn't have to do a challenge. They can check for just gluten or you can also do eggs, soy, casien and I think yeast. I was not diagnosed by them but I did testing after I had been gluten-free for a couple years. I didn't test for gluten but did gene testing and the other panels. For me soy was the key to complete resolution of issues. I also found out I carry a double dose of a gene that is pretty rare and in the US often considered an RA gene, which I did have symptoms of. In other countries it is a recognized celiac associated gene.

[passionfruit877]

  On 1/29/2010 at 1:44 AM, ravenwoodglass said:

Your doctor sounds pretty ignorant about celiac. I would opt for Enterolab testing if you can fit it in your budget. They can do the gene tests and also test for antibodies in the stoolfor up to a year after you stop eating gluten so you wouldn't have to do a challenge. They can check for just gluten or you can also do eggs, soy, casien and I think yeast. I was not diagnosed by them but I did testing after I had been gluten-free for a couple years. I didn't test for gluten but did gene testing and the other panels. For me soy was the key to complete resolution of issues. I also found out I carry a double dose of a gene that is pretty rare and in the US often considered an RA gene, which I did have symptoms of. In other countries it is a recognized celiac associated gene.

I was suspecting yeast maybe. I have a lot of anxiety problems. Were you diagnosed through the biopsy?

[ravenwoodglass]

  On 1/29/2010 at 3:00 AM, passionfruit877 said:

I was suspecting yeast maybe. I have a lot of anxiety problems. Were you diagnosed through the biopsy?

No, I was laying on my bathroom floor freely bleeding from the gluten challenge that the GI doctor demanded. It got me my 'official' diagnosis but at a large cost. I show a false negative in blood tests and had been misdiagnosed for many, many years. My PT insisted I see an allergist for an elimination diet. After a lot of nagging I did so. When I added gluten back in my GI issues came back full force at which point my allergist told me not to touch gluten again and referred me back to the GI. Who of course demanded the challenge. My GI before that had done every test but the endo. Since I had severe daily and nightly D he only checked the large intestine before I did the elimination diet. After I was finally diangosed he actually listened and made the remark that IBS does not wake someone up from sleep, it only hits when we are awake. If he had listened when I saw him the first few times he said he would never have diagnosed me with IBS. He apologized profusely but of course that didn't give me and my family back the years I had lost. However it made it so that we got no flack for demanding blood testing on my children through him, who both came back positive on blood tests.