Positive Genetic Test- Negative Blood Work

[jk624]

I recently had genetic testing and lab work for celiac from prometheus labs, ordered by my doctor. My doctor said I came back positive for having all the genes celiacs have but my blood work was negative. How much gluten do you have to eat to get positive results? I dont avoid it completely but I definitely eat a gluten restricted diet. What next? I have too many health issues and symptoms to just accept that i have inactive celiac genes. Ive had candida overgrowth and just got diagnosed with bacterial overgrowth. Should i request a biopsy or additional testing? Also do I need to have my 2 young children tested now? HELP!

[Wolicki]

OK, since you have the genes and symptoms, I would say you likely have it. The problem is that blood tests and biopsies can be false negative. The true test, IMHO is positive dietary response. You can have the biopsy, but remember that there are over 35 ft of intestine, and they only test 6 samples. So, it could be negative, too, even with Celiac. Or you could have gluten intolerance, which will never show up on a blood test or biopsy, but the symptoms are the same.

as for your kids, kids tests are notoriously inaccurate. Are they symptomatic? My 9 yr tested positive, but my 13 does not. Even though he vomits for most of the day after eating gluten.

I would suggest doing a strict gluten free trial, with a gluten free house to ensure you don't get cross contamination, for 3 months. If you have improved your symptoms you may have your answer. Then after 3 months you could challenge it.

After all I have learned, I don't think the official diagnosis is worth it, unless you live outside of the US where you get benefits. Too many people struggle for years with no diagnosis. And you don't need a diagnosis to try the diet to see if it works for you.

That's my two cents. And yes, I know that I am opinionated in this matter

[DebbieM]

I am somewhat in the same boat. I tested positive for genes and negative for blood work. I had been gluten free for 9mos so I did a 3 month gluten challenge in order to do a biopsy. The results of the biopsy were sort of inconclusive saying I showed signs of "suggestive early/mild celiac" and they want me to continue eating gluten for 3 more months and do biopsy again.

SO...my choices are 1. just go gluten free or 2. redo the biopsy

I am not at the place where many other seem to be able to accept that and just go gluten free w/out the diagnosis. I just REALLY, REALLY want to know for sure if I have it before going gluten free for the rest of my life. I am 100% happy to stop gluten, but I feel such a strong desire to have an official diagnosis.

AND..I have to think about my kids as well.

Good Luck.

Debbie

[jk624]

I am somewhat in the same boat. I tested positive for genes and negative for blood work. I had been gluten free for 9mos so I did a 3 month gluten challenge in order to do a biopsy. The results of the biopsy were sort of inconclusive saying I showed signs of "suggestive early/mild celiac" and they want me to continue eating gluten for 3 more months and do biopsy again.

SO...my choices are 1. just go gluten free or 2. redo the biopsy

I am not at the place where many other seem to be able to accept that and just go gluten free w/out the diagnosis. I just REALLY, REALLY want to know for sure if I have it before going gluten free for the rest of my life. I am 100% happy to stop gluten, but I feel such a strong desire to have an official diagnosis.

AND..I have to think about my kids as well.

Good Luck.

Debbie

Yea, i also feel i really want a definite diagnosis. I have been eating a "gluten restricted" diet for at least 2.5 years. I def don't eat an equivalent of 3-4 slices of bread a day! My doctor seems to think that having even a little gluten in your diet will yield a positive or at least slightly positive result. Im just NOT convinced, i still need more answers. I wonder if im eating enough gluten for a biospy to be positive. Im thinking of getting the entero lab stool test to get a diagnosis, anyone know if this is accurate?

[Jestgar]

I recently had genetic testing and lab work for celiac from prometheus labs, ordered by my doctor. My doctor said I came back positive for having all the genes celiacs have but my blood work was negative. How much gluten do you have to eat to get positive results? I dont avoid it completely but I definitely eat a gluten restricted diet. What next? I have too many health issues and symptoms to just accept that i have inactive celiac genes. Ive had candida overgrowth and just got diagnosed with bacterial overgrowth. Should i request a biopsy or additional testing? Also do I need to have my 2 young children tested now? HELP!

There are no 'Celiac genes', only a subset of HLA haplotypes that are associated with Celiac - like blue eyes and blond hair are associated. You can have one without the other.

[DebbieM]

Yea, i also feel i really want a definite diagnosis. I have been eating a "gluten restricted" diet for at least 2.5 years. I def don't eat an equivalent of 3-4 slices of bread a day! My doctor seems to think that having even a little gluten in your diet will yield a positive or at least slightly positive result. Im just NOT convinced, i still need more answers. I wonder if im eating enough gluten for a biospy to be positive. Im thinking of getting the entero lab stool test to get a diagnosis, anyone know if this is accurate?

I was thinking of doing the Entero Lab too....wondering if that might be more info to help me put the pieces together!?!?

[jk624]

There are no 'Celiac genes', only a subset of HLA haplotypes that are associated with Celiac - like blue eyes and blond hair are associated. You can have one without the other.

yes but the test did not say i only had one or some of the genes, it said i had ALL the genes associated with celiacs- so either i have celiacs or i could DEFINITELY develop it in the future

[k2626]

I just saw an expert GI who is also giving me this test due to yrs of gerd, and the past 2 yrs having neurpathy/neuro issues and past yr inflammation of pancreas. My other dr did not run the proper labs. Oy. Anyway, he said if my genetic tests come back POS but labs NEG he will do a biopsy of my stomach as it would be VERY likely I have it. Gluten does not always show in labs...