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Blood And Biopsy Results

jasonD2

By jasonD2
in Coping with Celiac Disease

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jasonD2 Experienced
jasonD2
Posted

My celiac blood panel and biopsy results were all negative, however, I have been strictly gluten free for 3 months (w/ a few accidental glutenings) and gluten "light" for almost 2 years. My most recent stool test still showed a high positive for gliadin antibodies. My doctor, who is a well known celiac specialist, told me not to do a gluten challenge because it is barbaric as she put it. I will follow up with her next week, but is there any chance that i may not even have celiac and that its just a gluten intolerance?

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Wolicki Enthusiast
Wolicki
Posted

IMHO, it doesn't matter. The answer either way is a lifelong gluten free diet.

ravenwoodglass Mentor
ravenwoodglass
Posted

My celiac blood panel and biopsy results were all negative, however, I have been strictly gluten free for 3 months (w/ a few accidental glutenings) and gluten "light" for almost 2 years. My most recent stool test still showed a high positive for gliadin antibodies. My doctor, who is a well known celiac specialist, told me not to do a gluten challenge because it is barbaric as she put it. I will follow up with her next week, but is there any chance that i may not even have celiac and that its just a gluten intolerance?

It really makes no difference which you have. IMHO. You need to be strict no matter what it is labeled.

mushroom Proficient
mushroom
Posted

It really makes no difference which you have. IMHO. You need to be strict no matter what it is labeled.

Amen to that. A lack of diagnosis of celiac disease means diddly squat if you are intolerant of gluten.

jasonD2 Experienced
jasonD2
Posted
  • Author

True, but with an intolerance an occasional glutening isnt as detrimental as it might be with celiac..yes?

Wolicki Enthusiast
Wolicki
Posted

Jason

There are many who believe that gluten intolerance is a baby case of Celiac. Same thing, just hasn't gotten bad enough to damage the intestines. In your case, you've been almost 100% gluten free long enough to skew the results, so you may not have gotten an accurate result.

My assessment from the sum total of your posts is that you are sick and tired of being sick and tired. With that in mind, yes, you do need to be very cautious of cross contamination and minor gluten if you want to get better.

horsegirl Enthusiast
horsegirl
Posted

I agree with all of the others who posted - it doesn't matter what you call it, you still have to avoid gluten at all costs. My blood tests were all normal, as was my intestinal biopsy. My stool tests were positive for gluten, which I'd already figured was the case from a trial run of being gluten free. I did a "gluten challenge" prior to the blood tests & biopsy (which both were negative despite being back on it for a month prior), & I had such severe neurological symptoms from being back on gluten that I thought I was having a stroke.

Don't go back on it, no matter what. Your body knows it's poison, even if tests don't prove it.

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ravenwoodglass Mentor
ravenwoodglass
Posted

True, but with an intolerance an occasional glutening isnt as detrimental as it might be with celiac..yes?

NO. You have antibodies forming whether it is under the label of gluten intolerance or celiac. Occasional glutening are just as damaging to both and take just as much time to recover from. The gluten intolerance label does NOT mean you have to be less strict.

jasonD2 Experienced
jasonD2
Posted
  • Author

OK- I won't ;)

stella1717 Newbie
stella1717
Posted

I recently had the endoscopy done and had to go on a gluten challenge the week before it was a horrible week. I was sick almost everyday. I had only been gluten-free a month prior. I too have had tons of tests done since I was in my teens and could never come up with a solution. I also believe in what the others say. Stick to gluten free if that is what is making you feel better.

  • 3 weeks later...
Betty Boop Rookie
Betty Boop
Posted

I agree with all of the others who posted - it doesn't matter what you call it, you still have to avoid gluten at all costs. My blood tests were all normal, as was my intestinal biopsy. My stool tests were positive for gluten, which I'd already figured was the case from a trial run of being gluten free. I did a "gluten challenge" prior to the blood tests & biopsy (which both were negative despite being back on it for a month prior), & I had such severe neurological symptoms from being back on gluten that I thought I was having a stroke.

Don't go back on it, no matter what. Your body knows it's poison, even if tests don't prove it.

Betty Boop Rookie
Betty Boop
Posted

What were your stroke-like symptoms?

EJR Rookie
EJR
Posted

Hi Jason,

I have been following and reading your posts for the last few months. Your problems with food

sound very similar to my own. My biopsy was negative (after being gluten free for 1 month). My stool

analysis at Enterolab showed elevated anti-gliadin. I am also DQ8 .... I remember that this is the same for

you as well. I also believe that antibiotics started my gut problems and gall bladder surgery made them

even worse. Eating gluten makes me feel worse but even off the gluten I am still having major problems.

It is very discouraging.

You mention that you are going to a Celiac specialist. Did she do the stool test or did you have it done at

Enterolab? I am just curious if other doctors are also doing the stool tests now.

Thanks,

Joyce

Betty Boop Rookie
Betty Boop
Posted

I agree with all of the others who posted - it doesn't matter what you call it, you still have to avoid gluten at all costs. My blood tests were all normal, as was my intestinal biopsy. My stool tests were positive for gluten, which I'd already figured was the case from a trial run of being gluten free. I did a "gluten challenge" prior to the blood tests & biopsy (which both were negative despite being back on it for a month prior), & I had such severe neurological symptoms from being back on gluten that I thought I was having a stroke.

Don't go back on it, no matter what. Your body knows it's poison, even if tests don't prove it.

sandsurfgirl Collaborator
sandsurfgirl
Posted

If you have been gluten free or gluten light for awhile, then your results might not be accurate.

I would die if I did a gluten challenge. I already ended up in ER 2 weeks ago from a gluten overload, which lead to my diagnosis. This last 2 weeks of healing have been so hard. No way will I go back and go through all of this again.

Stay gluten free and work on getting a wider variety of healthy foods into your diet is my humble opinion.

Reba32 Rookie
Reba32
Posted

Celiac disease is just gluten intolerance gone horribly wrong. Just because a gluten panel blood test comes up negative, doesn't mean you can eat gluten (despite what most doctors will tell you!). It just means you may not have full blown Celiac disease. And I agree, if you were "gluten light" before your tests, the results could definitely be skewed toward the negative.

If you do continue to eat gluten, even "gluten light" as you put it, further testing a year or few down the road will likely be positive. But by then the damage is done, and not all of it is reversible. Don't take the chance!

If you feel better being gluten free, even if you're not Celiac, continue gluten free.

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