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imsohungry

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imsohungry Collaborator
imsohungry
Posted

Hi guys,

I haven't written in awhile. The truth is that I am homebound b/c of my frequent diarrhea and illness. Nobody knows what it is! I've been hospitalized 2 or 3 times in the last 6 months and been to the ER 4 or 5 times. I am VERY sick.

Anyway, they had diagnosed me with Celiac a long time ago and then changed it to ulcerative colitis and now changed it to nothing!

I requested a copy of my medical records and discovered that 18 months ago when I was tested for Celiac, these were my results:

IGA antibody: 13 (11 is cut-off for "normal")

IGA serum: 44 (80-something is cut-off for normal)

TTG antibody was 3 (negative)

I was told I didn't have any signs of gluten intolerance/celiac, but only one of those tests came back a definite negative. What are your opinions? What other tests have ya'll had done? My great aunt has Celiac, my mother never goes to the doctor, but she has (at a minimum) IBS and rectal cancer. I may not have Celiac disease, but I do wonder about gluten intolerance and would like to ask for a full panel of bloodwork just to see what I can find out. I have fissures and hemmoroids that the surgeon said he can't fix until the GI or GP gets my diarrhea under 10 times a day.

I have had a biopsy recently, and it was normal.

Thanks for any feedback!

Julie

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ravenwoodglass Mentor
ravenwoodglass
Posted

Are you gluten free or when tests came back negative did you stick with a gluten diet? If your still consuming gluten my first suggestion would be to go with a very strict trial of the diet for a couple of months as false negatives are pretty common. My own diagnosis was delayed by years because I show false negative on testing.

txplowgirl Enthusiast
txplowgirl
Posted

I agree with Raven, I think you need to be gluten free. It sounds as if you have at the very least an intolerance. I have never heard of a false positive test. I would start your gluten free diet today.

imsohungry Collaborator
imsohungry
Posted
  • Author

Hi there! How have you been? :)

Well, only one of my tests came back definitely negative for Celiac, and it was TTG. I can't remember if I was eating gluten at the time or not.

Do you happen to know what tests I should have done to have a full panal of bloodwork for gluten intolerance?

Good hearing from you!

Julie

ravenwoodglass Mentor
ravenwoodglass
Posted

Hi there! How have you been? :)

Well, only one of my tests came back definitely negative for Celiac, and it was TTG. I can't remember if I was eating gluten at the time or not.

Do you happen to know what tests I should have done to have a full panal of bloodwork for gluten intolerance?

Good hearing from you!

Julie

This is only my opinion but since you have already had positive tests I wouldn't even bother to have more testing done. We have recently been hearing of folks being denied health insurance because of diagnosis. With positive blood tests you really already have a diagnosis, IMHO.

GlutenFreeManna Rising Star
GlutenFreeManna
Posted

I requested a copy of my medical records and discovered that 18 months ago when I was tested for Celiac, these were my results:

IGA antibody: 13 (11 is cut-off for "normal")

IGA serum: 44 (80-something is cut-off for normal)

TTG antibody was 3 (negative)

Thanks for any feedback!

Julie

I agree with Raven. You have a positive test. The one positive trumps the negative ones. You dr was no good. They should have at least advised you to try goign gluten free. Get a new dr and get retested (since this was 18 months ago it could change) if you really need a dr diagnosis befor egoing gluten free. If you are even gluten light at the time of testing it could make the results false negative. So retest if you cna and try the diet ASAP no matter what the results say.

imsohungry Collaborator
imsohungry
Posted
  • Author

Thank you! I'm just trying to figure this out. Sigh... You guys are more knowledgable than the doctors.

Blessings,

Julie

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cassP Contributor
cassP
Posted

Hi guys,

I haven't written in awhile. The truth is that I am homebound b/c of my frequent diarrhea and illness. Nobody knows what it is! I've been hospitalized 2 or 3 times in the last 6 months and been to the ER 4 or 5 times. I am VERY sick.

Anyway, they had diagnosed me with Celiac a long time ago and then changed it to ulcerative colitis and now changed it to nothing!

I requested a copy of my medical records and discovered that 18 months ago when I was tested for Celiac, these were my results:

IGA antibody: 13 (11 is cut-off for "normal")

IGA serum: 44 (80-something is cut-off for normal)

TTG antibody was 3 (negative)

I was told I didn't have any signs of gluten intolerance/celiac, but only one of those tests came back a definite negative. What are your opinions? What other tests have ya'll had done? My great aunt has Celiac, my mother never goes to the doctor, but she has (at a minimum) IBS and rectal cancer. I may not have Celiac disease, but I do wonder about gluten intolerance and would like to ask for a full panel of bloodwork just to see what I can find out. I have fissures and hemmoroids that the surgeon said he can't fix until the GI or GP gets my diarrhea under 10 times a day.

I have had a biopsy recently, and it was normal.

Thanks for any feedback!

Julie

if your Iga Serum was only 44- then u are Iga Deficient- which means any of your antibody tests that test Iga will be INNACCURATE! only your Igg tests could be looked at to show anything. Iga deficiency is also common in those with Celiac.

mushroom Proficient
mushroom
Posted

Whether or not you were eating gluten at the time of the biopsy, it is possible to have a false negative on this test but have positive blood results. The biopsy depends on the skill of the doctor, whether he takes enough samples, and whether he takes them from the right places.

I would consider myself diagnosed and start a gluten free diet immediately so that you can clear up your diarrhea, fissures and hemorrhoids. :)

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