Dont Know What To Do

taz sharratt · June 13, 2006

my doc has just decided that my levels in my blood test for gluten-free was not conclusiv enough,ive been gluten-free for 1 month now and had a posotiv reaction with the diet, the prob is is that my doc has now said she wants me to have a colonoscopy for a proper diagnoses, if i have this done she wants me off the gluten-free diet and eating normal so the gastro doc can see damage if im on the gluten-free diet the problem will heal itself and i wont get the diagnoses, my prob is 1 of the main syptome for\me is thrush (cronic) since ive been gluten-free its gone, the thought of going through that again i could cry, dont know what to do, do i reallly need to put myself thrpugh the procedure when i know what it is and should i come off gluten-free just to satisfy doctors and give them proof! im really upset about this!!!!

Smunkeemom · June 13, 2006

if you are fine being gluten free, I would just tell the doctor that. A firm diagnosis isn't going to do much for you, you will be gluten free after that right? Unless you have a really really good reason for "needing to know' or needing an "actual diagnosis" I would trust your gut and not go on gluten for a test.

Besides you have to eat a lot of gluten for like 3 months for the tests to be accurate anyway, you don't want to be sick for 3 months just to find out what you already know right?

(just my opinion)

gf2000 · June 13, 2006

I believe the endoscopy is the gold standard for diagnosis. The test allows the doctor to see the condition of the villi in the small intestine. This also allows them to see anything that will need to be biopsied to check form any abnormalities due to the destruction of the villi. I believe it is necessary, as we all know that we celiacs run a higher risk of gut cancers for several years after adhering to a gluten-free diet. I was diagnosed befor the blood test was available, altho I am tested annually to make sure something isn't sneaking in and just not making me sick. I am happy to know that my villi are cancer free. I suggest the test.

Good luck.

taz sharratt said:
my doc has just decided that my levels in my blood test for gluten-free was not conclusiv enough,ive been gluten-free for 1 month now and had a posotiv reaction with the diet, the prob is is that my doc has now said she wants me to have a colonoscopy for a proper diagnoses, if i have this done she wants me off the gluten-free diet and eating normal so the gastro doc can see damage if im on the gluten-free diet the problem will heal itself and i wont get the diagnoses, my prob is 1 of the main syptome for\me is thrush (cronic) since ive been gluten-free its gone, the thought of going through that again i could cry, dont know what to do, do i reallly need to put myself thrpugh the procedure when i know what it is and should i come off gluten-free just to satisfy doctors and give them proof! im really upset about this!!!!

June 13, 2006

tell the Dr.s to stick it... You know that gluten is bad for you. The tests aren't going to change that. In fact, since you've been gluten-free, you could get false negative results and they won't believe you anyway. Just trust your gut, stay gluten-free, and forget the Dr. Seriously. You have to take your own health into your own hands and if you are improving on the gluten-free diet then you have your answer and you do not need to satisfy some Dr.s morbid curiosity or ignorance! LOL...

insist that the Dr. take into account your positive dietary response and that is proof enough for you and that you do not want to undergo any unnecessary testing because you will be gluten free regardless of the results because you feel so much better without gluten in your life. Tell them that positive dietary response IS a valid diagnostic tool and you want them to accept that and leave you alone! (tee hee)

I feel very strongly that the medical community relies too heavily on testing methods that are just not sensitive enough and are flawed... you can get false negatives but not false positives. If they try to tell you otherwise then they are stuck in the dark ages of diagnosing Celiac/Gluten Intolerance. Positive Dietary response is the most valid diagnostic tool, and if your blood tests were even borderline positive you have this. It's that simple. Good luck standing up for yourself, I'll be in your corner rooting you on!

gf2000 said:
I believe the endoscopy is the gold standard for diagnosis. The test allows the doctor to see the condition of the villi in the small intestine. This also allows them to see anything that will need to be biopsied to check form any abnormalities due to the destruction of the villi. I believe it is necessary, as we all know that we celiacs run a higher risk of gut cancers for several years after adhering to a gluten-free diet. I was diagnosed befor the blood test was available, altho I am tested annually to make sure something isn't sneaking in and just not making me sick. I am happy to know that my villi are cancer free. I suggest the test.
Good luck.

the endoscopy is fast being replaced as the gold standard, and more "experts" are beginning to recognize that the biopsy misses TOO MANY cases of Celiac. It misses it in the early stages and if the damage is only sporadic it can be missed. The blood tests are sensitive enough that if they are positive then Celiac is positive, if they are negative though, you cannot rule it out because they are not sensitive enough... therefore if it shows up, lucky you for getting a dx, but if it doesn't show up you are screwed? Positive dietary response is the most valid way of determining if you have a problem with gluten (and it's NOT ALWAYS CELIAC) and since the only cure is the diet, and when you are on the diet all of your risk factors for cancers and other issues return to that of the "normal" population, then there is no harm in just sticking with the diet and forgoing the biopsy. Besides, after being gluten-free, no matter how much gluten you consume for 3 months, you still run the risk of the damage being healed enough that it won't show on the biopsy.

June 20, 2006

Well said, Nini!! I wholeheartedly agree!

Christine

Ursa Major · June 20, 2006

greengirl said:
Well said, Nini!! I wholeheartedly agree!

Christine

Me too!

ravenwoodglass · June 20, 2006

nini said:
I feel very strongly that the medical community relies too heavily on testing methods that are just not sensitive enough and are flawed... you can get false negatives but not false positives. If they try to tell you otherwise then they are stuck in the dark ages of diagnosing Celiac/Gluten Intolerance. Positive Dietary response is the most valid diagnostic tool, and if your blood tests were even borderline positive you have this. It's that simple. Good luck standing up for yourself, I'll be in your corner rooting you on!
the endoscopy is fast being replaced as the gold standard, and more "experts" are beginning to recognize that the biopsy misses TOO MANY cases of Celiac. It misses it in the early stages and if the damage is only sporadic it can be missed. The blood tests are sensitive enough that if they are positive then Celiac is positive, if they are negative though, you cannot rule it out because they are not sensitive enough... therefore if it shows up, lucky you for getting a dx, but if it doesn't show up you are screwed? Positive dietary response is the most valid way of determining if you have a problem with gluten (and it's NOT ALWAYS CELIAC) and since the only cure is the diet, and when you are on the diet all of your risk factors for cancers and other issues return to that of the "normal" population, then there is no harm in just sticking with the diet and forgoing the biopsy. Besides, after being gluten-free, no matter how much gluten you consume for 3 months, you still run the risk of the damage being healed enough that it won't show on the biopsy.

Nini I agree with you completely. My DD didn't want to accept her diagnosis and after she went to college she went back on gluten for a couple of weeks for another endo, her damage was just beginning when she had the first endo and had healed gluten-free. The result is I have a DD who is now poisoning herself daily because a doctor told her the first test was wrong. And there is nothing I can do about it. She insists this doctor in Boston is the 'best' there is in the country as far as celiac goes and refuses to accept that the first doctors diagnosis was valid. Despite the good resolution of all her celiac related problems she is now back to the 'it's just nerves' diagnosis. Doctors in this country don't want us to be diagnosed celiac, that would just show how incompetent they have been in diagnosing us with IBS and killing us with meds. Dietary response is the best test there is.

eKatherine · June 20, 2006

ravenwoodglass said:
Nini I agree with you completely. My DD didn't want to accept her diagnosis and after she went to college she went back on gluten for a couple of weeks for another endo, her damage was just beginning when she had the first endo and had healed gluten-free. The result is I have a DD who is now poisoning herself daily because a doctor told her the first test was wrong. And there is nothing I can do about it. She insists this doctor in Boston is the 'best' there is in the country as far as celiac goes and refuses to accept that the first doctors diagnosis was valid. Despite the good resolution of all her celiac related problems she is now back to the 'it's just nerves' diagnosis. Doctors in this country don't want us to be diagnosed celiac, that would just show how incompetent they have been in diagnosing us with IBS and killing us with meds. Dietary response is the best test there is.

Absolutely true. How many people come here posting that they're looking for a second opinion? It doesn't mean they're looking for confirmation, it means they're looking for a different diagnosis.

Considering the state of diagnosis in this country, if you want to find a negative diagnosis, you probably can even if you are positive on all tests.

There's something about having to change your diet that people so totally resist. Some psychological component must be at work for people to say "I'd rather die than give up wheat" and mean it.

penguin · June 20, 2006

eKatherine said:
Absolutely true. How many people come here posting that they're looking for a second opinion? It doesn't mean they're looking for confirmation, it means they're looking for a different diagnosis.

That is not always true. I'm looking for a second opinion and I'm going to be gluten-free after my endo no matter what. In my case, I was dx'ed celiac on inconclusive bloodwork and dietary response alone by my primary doctor. I decided that I needed the endo or else I would be questioning my dx until the day I died and I would have cheated a lot. That does not mean that if my endo is negative I will eat gluten, the GI said that I'm definitely gluten intolerant, it's just a matter of seeing what the damage is.

Bottom line: it's a personal decision.

tarnalberry · June 20, 2006

There isn't a right answer for everyone on this one. Some people need a doctor-confirmed diagnosis. If you're one of those, and your doc won't take a dietary challenge result, then going back on gluten for a biopsy may well be the right answer for you. I don't think it's the best answer in the majority of cases, but individuals need individual answers, not blanket answers.