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?wrong Test For Celiac Disease

poopedout

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poopedout Apprentice
poopedout
Posted

I started having diarrhea mainly at night - watery, 6 or 7x a night - in October or November. At the end of December I thought it was likely that it was gluten intolerance so I started a gluten free diet then. After two weeks there were signs of improvement. After two months (end of February) there was noticable improvement and the diarrhea stopped. This lasted for one month and by the end of March the diarrhea came back. It is again mainly at night usually starting around midnight.

I saw my GP about this for the first time at the end of April. He ordered routine blood tests, nothing specific for celiac disease. I don't know the results. He also ordered a CT colonogram which I have to have before seeing a GI specialist.

I think the colonogram is not what I should have first and I am worried about the bowel prep for it as I have already lost 12% of my body weight and am still losing. The test is scheduled for June 1st. It seems the test is to rule out colon cancer. I would prefer to see a GI Specialist first before having the colonogram.

Should I cancel the colonogram and wait to see the specialist? This is Canada so the wait time could be six months? I don't know how much longer I can continue to have diarrhea and have most of my food go down the drain before I get really sick.

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WheatChef Apprentice
WheatChef
Posted

The CT scan will not test for celiacs, but you don't know that is all that is wrong with you.

nora-n Rookie
nora-n
Posted

You need a biopsy of the small bowel, and starting from the top, to check for celiac. Not from teh bottom.

And, it will be negative if you are gluten free.

You can buy a home test to test for TTg in Canada, and it is probably at least as sensitive as the hospital blood test. But, it will only be positive if you eat at least 0,3-0,5 grams gluten per kg weight.

You should get the tests for free from the national health service.

I suggested the ttg home test so you have some kind of argument to present....but of course blood test negative celiac does excist.

poopedout Apprentice
poopedout
Posted
  • Author

You need a biopsy of the small bowel, and starting from the top, to check for celiac. Not from teh bottom.

And, it will be negative if you are gluten free.

You can buy a home test to test for TTg in Canada, and it is probably at least as sensitive as the hospital blood test. But, it will only be positive if you eat at least 0,3-0,5 grams gluten per kg weight.

You should get the tests for free from the national health service.

I suggested the ttg home test so you have some kind of argument to present....but of course blood test negative celiac does excist.

I did the home test but I was not able to get the blood to come out of the cannula into the solution so it did not work. They did not say anything about eating gluten before the test.

Essentially I am up the creek because I have been gluten free for more than four months so none of the tests are of any use. I could not go back to eating gluten again for four months so that I could have the tests because I could not tolerate the horrible diarrhea again. The only reason to do an endoscopy now is to see if I have permanent damage to my villi. I think my only option is to continue on the gluten free diet and to assume that it is gluten intolerance or celiac if I get better again. Any other suggestions?

nora-n Rookie
nora-n
Posted

the home ttg test and the hospital ttg test only work if you still eta gltuen, and a lot of gluten. It dose say so somewhere.

The gene test does not rely on gluten.

you can have he gene test through your doctor, or order it from Enterolab in teh U.S. privately.

Enterolab also can detect gluten antibodies up to a year after going gluten free. They cannot diagnose celiac, only gluten sensitivity since their tests are for too sensitive.

Also, they test for antibodies to casein or other things, which can cause just as severe symptoms as gluten.

GFinDC Veteran
GFinDC
Posted

Since you are already gluten free, there isn't much point in any tests for celiac except the Enterolabs tests. Have you tried finding any other possible food intolerances? Dairy, soy, nightshades, food colorings, preservatives, yeast? There are all kinds of possible food gotchas out there that can make you sick.

poopedout Apprentice
poopedout
Posted
  • Author

the home ttg test and the hospital ttg test only work if you still eta gltuen, and a lot of gluten. It dose say so somewhere.

The gene test does not rely on gluten.

you can have he gene test through your doctor, or order it from Enterolab in teh U.S. privately.

Enterolab also can detect gluten antibodies up to a year after going gluten free. They cannot diagnose celiac, only gluten sensitivity since their tests are for too sensitive.

Also, they test for antibodies to casein or other things, which can cause just as severe symptoms as gluten.

Thanks for the advice. I went to the Enterolab website and they recommend the Gluten Sensitivity and Gene Panel Complete. The cost is $349.00 U.S. I don't think I can get the genetic testing done here as probably the health service will not do the tests, not even if I want to pay for them. I am beginning to wonder if there is any point in getting a definitive diagnosis. Probably what I will do is have the colonogram to rule out cancer, see what the GI specialist says, not have an endoscopy, and continue on the gluten free diet. If I can get the genetic testing done here, I will. If not, I will have just the genetic testing done by Enterolab.

When I first went to the doctor at the end of April, I did not know that most of the tests would be useless because I have been on a gluten free diet for four months. Thanks to this site I am much more knowledgeable now. I am wondering if the GI Specialist will be as knowledgeable. I think I am starting to improve again very slowly so the gluten free diet is probably the answer.

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poopedout Apprentice
poopedout
Posted
  • Author

Since you are already gluten free, there isn't much point in any tests for celiac except the Enterolabs tests. Have you tried finding any other possible food intolerances? Dairy, soy, nightshades, food colorings, preservatives, yeast? There are all kinds of possible food gotchas out there that can make you sick.

I am thinking that also - that there is no point in having the tests. As for other food intolerances, I don't think so. This is all so weird for me as I have never been really sick before. I never go to the doctor, I am not on any medications, and I am 69 years old. I have read that gluten intolerance can appear even at my age. I would think that all of the other ones would have reared their ugly heads before this.

sb2178 Enthusiast
sb2178
Posted

Make sure they are taking biopsies to check for Crohn's/colitis while they do the colonoscopy -- they would need to be eliminated as problems. Maybe you can see if they will do an endoscopy with biopsies at the same time so you only have to undergo the sedation once.

Good luck.

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