Just Got My Results Back...

[ked85]

Steadily over the past year I've been having increasing "episodes" as I call them (digestive issues). I tried probiotics for a couple of weeks, and while they helped I still did not feel normal. There were no "trigger" foods, it seemed very random - from pasta, to sushi, to rice and beans. I became so frustrated that, at the behest of my mother (who was diagnosed with Celiac 15 years ago), I went to a gastro to get tested for Celiac and Thyroid issues.

I got the gene test done, and was told that the test came back negative for Celiac, but I have a VERY high chance of developing it later in life (10x normal population). How does that work? The nurse didn't seem to know much about the test, so she wasn't very helpful. They recommended I go on some pills (I guess for IBS) for 2 weeks to see if they help, but I am VERY against using drugs for this. I don't want a bandaid, and I feel like a dietary change is what I need.

I've read some places that this gene Celiac test can come back a false negative? I started a gluten free diet a few days ago (which is easier to adjust to since I grew up with my mother having it) - I don't really notice much of a change yet but I'm sure it takes time. Is this the right step to make sure I don't have an intolerance? If I'm so likely to get it later, should I just... start now and learn to live with it to prevent any issues in the future? It's very confusing.

[GlutenFreeManna]

Steadily over the past year I've been having increasing "episodes" as I call them (digestive issues). I tried probiotics for a couple of weeks, and while they helped I still did not feel normal. There were no "trigger" foods, it seemed very random - from pasta, to sushi, to rice and beans. I became so frustrated that, at the behest of my mother (who was diagnosed with Celiac 15 years ago), I went to a gastro to get tested for Celiac and Thyroid issues.

I got the gene test done, and was told that the test came back negative for Celiac, but I have a VERY high chance of developing it later in life (10x normal population). How does that work? The nurse didn't seem to know much about the test, so she wasn't very helpful. They recommended I go on some pills (I guess for IBS) for 2 weeks to see if they help, but I am VERY against using drugs for this. I don't want a bandaid, and I feel like a dietary change is what I need.

I've read some places that this gene Celiac test can come back a false negative? I started a gluten free diet a few days ago (which is easier to adjust to since I grew up with my mother having it) - I don't really notice much of a change yet but I'm sure it takes time. Is this the right step to make sure I don't have an intolerance? If I'm so likely to get it later, should I just... start now and learn to live with it to prevent any issues in the future? It's very confusing.

I think you need to get a copy of your test results to see what they really did. If they really just did a gene test then they did not test you for active celiac disease at all. The gene test just tells you if you have the most common genes. The genetic test alone cannot diagnose or rule out celiac (because you can have celiac and still not have the two most common genes).

[ked85]

I think you need to get a copy of your test results to see what they really did. If they really just did a gene test then they did not test you for active celiac disease at all. The gene test just tells you if you have the most common genes. The genetic test alone cannot diagnose or rule out celiac (because you can have celiac and still not have the two most common genes).

Thanks. I called the office and will pick up a copy today after work and get back to this thread with a little more in depth info (I know I got 4 different tests done, the office has been kind of bad about communicating information to me - I've only been able to talk to the nurse, not the actual doctor, very frustrating).

[ked85]

So here were the results (it was a complete test, Prometheus Celiac Plus):

DGP IgG: 0.8 ml

DGP IgA: 0.9 ml

TTG IgA: 0.5 ml

EMA IgA: Negative

Total IgA: 108 mg

Those look like normal levels, according to the reference range. I almost WISH I had Celiac so I could figure out what is wrong with me. Then at least I could make it stop. I'll continue with the gluten (and lactose) free diet anyway, in case it's an intolerance. But it's just so frustrating knowing that my mom went through the same thing and it took them years to diagnose her properly with Celiac.

[GlutenFreeManna]

Keep in mind about 20% of test results are false negatives. With your family history and your current symptoms have you considered pushing for an endoscopy with biopsies? Don't let them just label you IBS and give you meds--that is not a diagnosis, it is a set of symptoms. You can either keep pushing for testing or you can just go gluten free without diagnosis. If it helps your symptoms you have your answer.

[ked85]

Keep in mind about 20% of test results are false negatives. With your family history and your current symptoms have you considered pushing for an endoscopy with biopsies? Don't let them just label you IBS and give you meds--that is not a diagnosis, it is a set of symptoms. You can either keep pushing for testing or you can just go gluten free without diagnosis. If it helps your symptoms you have your answer.

I haven't asked for the endo biopsy, I think my doctor wants to avoid any invasive testing if he can. I was told that if the diet doesn't work to try some pills for 2 weeks, and if they helped then I had IBS (that seems like a really, really lame "diagnosis"). But I might just push for an endo to get this all over with and make sure there's nothing more sinister going on down there.

I guess I just don't know how long I should do the diet before I schedule a biopsy (if I don't notice any results from removing gluten and lactose).

[ravenwoodglass]

I guess I just don't know how long I should do the diet before I schedule a biopsy (if I don't notice any results from removing gluten and lactose).

The time to get the endo is before you do the diet. If you are gluten free the endo will come back negative. Since you have a mother who is celiac the chances that you are also dealing with it are IMHO pretty high. False negatives with testing are not uncommon at all.

[GlutenFreeManna]

I haven't asked for the endo biopsy, I think my doctor wants to avoid any invasive testing if he can. I was told that if the diet doesn't work to try some pills for 2 weeks, and if they helped then I had IBS (that seems like a really, really lame "diagnosis"). But I might just push for an endo to get this all over with and make sure there's nothing more sinister going on down there.

I guess I just don't know how long I should do the diet before I schedule a biopsy (if I don't notice any results from removing gluten and lactose).

Your dr is no good. You're right about that being lame. Get a new dr or push for additional testing witht he one you have. If you want to test the diet to see if it helps it is recomended you trial it for several months. The only problem comes if you want an official diagnosis later. Once you have been gluten free for several montsh you would have to go back to eating gltuen in the equivalent of 3-4 slices of bread per day for 3 MONTHS prior to testing (whether blood or biopsy). Many people cannot handle the gluten challenge (they get too sick from it to complete it) and end up self-diagnosed as "gluten intolerant" or end up with no diagnosis at all. All that said you don't need the dr's permission to go gluten free. What you need to decide is if your would be able to strict to a gluten free diet without the dr diagnosis.