Test For Progress?

[master44]

I was diagnosed with Celiac 2 months ago and have been generally feeling better since being on a gluten free diet. However I read that even a small amount of gluten can be damaging. I was diagnosed with the blood test that showed a high antibody count, bud did not have the biopsy. My sister had the biopsy and since I have a close family member diagnosed, it was deemed unnecessary. When my sister had the Biopsy they said there was no villi, but since I didn't have it done I don't know how bad I was.

Given that brief history is there any way to tell if being on the gluten free diet is helping? If I got another blood workup would I see decreased levels of antibodies? How can I tell if the villi have come back? How do you determine if you are malnurished? I guess I just want to figure out how to gauge how well I am doing, or if I am still doing damage...

Thanks!

[cgilsing]

I would suggest going ahead and getting a biopsy. It would give you a definate answer as to how much damage has been done to your intestines, and the biopsy is the "gold seal" diagnosis for celiac disease.....you will fight doctors forever without it (trust me I know). Once you are on a gluten-free diet there is no going back and getting that first biopsy . As far as knowing if the diet is working for you...I think it's different for everyone. Some people don't have outward symptoms of celiac disease and it's difficult for them to tell. For others it's obvious. If you are having malnutrition symptoms like weakness, tiredness, hair loss, bleeding gums, sleep disterbances, brittle nails, and weight loss.....then those should improve with the diet (although it might take some time) I hope that helps answer some of your questions!

[eKatherine]

I would suggest going ahead and getting a biopsy. It would give you a definate answer as to how much damage has been done to your intestines, and the biopsy is the "gold seal" diagnosis for celiac disease.....

Except of course that it misses lots of people with other advanced symptoms, including irreversible neurological damage, and it also misses other stages of the disease, which is why it's not an accurate diagnostic tool. And then these people are told to continue to eat gluten, as they "don't have celiac", irrespective of how their health declines, while their various symptoms are treated as unrelated to each other.

As you have been gluten-free for two months, it will be neccessary to go back on gluten for several months in order to see if you can induce these pathological changes that you may have healed by now. That's not healthy, and you already know you have the disease. If you want more evidence, do Enterolab, which is non-invasive, and will give you real information about your intolerances and the genes you carry.

[cgilsing]

Except of course that it misses lots of people with other advanced symptoms, including irreversible neurological damage, and it also misses other stages of the disease, which is why it's not an accurate diagnostic tool. And then these people are told to continue to eat gluten, as they "don't have celiac", irrespective of how their health declines, while their various symptoms are treated as unrelated to each other.

As you have been gluten-free for two months, it will be neccessary to go back on gluten for several months in order to see if you can induce these pathological changes that you may have healed by now. That's not healthy, and you already know you have the disease. If you want more evidence, do Enterolab, which is non-invasive, and will give you real information about your intolerances and the genes you carry.

Im not saying that its a "gold seal" diagnosis in the sense that its a definate yes or no diagnosis...Im just saying that the medical community looks at it that way. Ive bee gluten-free for 2.5 years, but failed to get the biopsy in the beginning and now I can barely get a GI to see me. If I had it to do over again I would be beating down doors to get that biopsy! It may not be as accurate as it should be, but if you get a positive biopsy than at least doctors will take you seriously from then on.

[Kaycee]

I was diagnosed with Celiac 2 months ago and have been generally feeling better since being on a gluten free diet. However I read that even a small amount of gluten can be damaging. I was diagnosed with the blood test that showed a high antibody count, bud did not have the biopsy. My sister had the biopsy and since I have a close family member diagnosed, it was deemed unnecessary. When my sister had the Biopsy they said there was no villi, but since I didn't have it done I don't know how bad I was.

Given that brief history is there any way to tell if being on the gluten free diet is helping? If I got another blood workup would I see decreased levels of antibodies? How can I tell if the villi have come back? How do you determine if you are malnurished? I guess I just want to figure out how to gauge how well I am doing, or if I am still doing damage...

Thanks!

I too was diagnosed with a blood test.

That was followed two months later with another blood test, which showed my levels were going down slowly. So I was responding to a gluten free diet, but sad to say there was room for improvement on that diet. I was just learning the ropes at that stage. Now I am even more careful with what I eat.

So the blood tests will show if things are improving with the antibody levels.

Since you have coeliac, you would not even consider eating the tiniest bit of gluten would you? I know we can and do accidently gluten ourselves, but how much damage that can do I don't know. As long as it is not a common occurence it shouldn't do too much damage.

You say you are feeling better being gluten free, so that is something to show for it, and that the diet is working.

Wish you all the best.

Cathy