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Anyone Care To Guess...


JerryK

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JerryK Community Regular

So to recap my Enterolab tests were

Gluten Sensitivity Stool Test

Fecal Antigliadin IgA 42 (Normal Range <10 Units)

Tissue Transglutaminase Stool Test

Fecal Antitissue Transglutaminase IgA 20 Units (Normal Range <10 Units)

Anyone out there with similar results from Enterolab have the official medically sanctioned blood tests and how did they compare? Or to rephrase: Anyone care to guess if I'll "fail" the standard blood test or not :unsure:


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celiacgirls Apprentice

I don't have a guess for you but as a comparison, my husband's Enterolab tests were 18 for the gluten antibody test and 14 for the tTg test and his blood tests were normal.

GlutenWrangler Contributor

My numbers were around 71 and 25 respectively. I had positive blood tests, except for the Endomysial antibodies. You may or may not have a positive blood test, but its too hard to guess.

-Brian

Ursa Major Collaborator

Jerry, since you've been on the gluten-free diet for a little while now, I'd guess they'd be negative.

2kids4me Contributor

I think more doctors should listen to the patient and not rely soley on blood tests.

Example - my daughter had anti-endomeseal antibodies that barely registered - GI doc said they were as low as you get get and still be considered positive.

The biopsy however was conclusive with villous atrophy - the extent of which surprised the GI doc.

Even if you "fail" the standard blood test........if eating gluten free helps you then just think of it as eating healthy and using alternate flours.

Sandy

JerryK Community Regular
My numbers were around 71 and 25 respectively. I had positive blood tests, except for the Endomysial antibodies. You may or may not have a positive blood test, but its too hard to guess.

-Brian

Brian, did you decide to forgo the endoscope?? I'm not sure I want to undergo that...

It would seem if I have a positive Enterolab result and a positve blood test, which goes down

after you've been gluten-free for a while, that should be good enough..

Gentleheart Enthusiast

I had similar results to you, plus even malabsorption. I still came up negative on the blood tests.


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AliceW Apprentice
So to recap my Enterolab tests were

Gluten Sensitivity Stool Test

Fecal Antigliadin IgA 42 (Normal Range <10 Units)

Tissue Transglutaminase Stool Test

Fecal Antitissue Transglutaminase IgA 20 Units (Normal Range <10 Units)

Anyone out there with similar results from Enterolab have the official medically sanctioned blood tests and how did they compare? Or to rephrase: Anyone care to guess if I'll "fail" the standard blood test or not :unsure:

Hi Jerry,

I had very similar result to yours: fecal antigliadin 27 units; fecal TTG 33. My conventional celiac blood tests were normal.

I started a trial gluten-free diet last month (on 12/15) and seem to be responding amazingly well to it so far, but I'm withholding judgement for the time being. :)

Good luck!

Alice

JerryK Community Regular
Hi Jerry,

I had very similar result to yours: fecal antigliadin 27 units; fecal TTG 33. My conventional celiac blood tests were normal.

I started a trial gluten-free diet last month (on 12/15) and seem to be responding amazingly well to it so far, but I'm withholding judgement for the time being. :)

Good luck!

Alice

So, am I just wasting my time hoping for some agreement from the standard blood tests? It's hard to decide what to do...

AliceW Apprentice
So, am I just wasting my time hoping for some agreement from the standard blood tests? It's hard to decide what to do...

I think it's a very good idea to get the blood tests, so that you have a better sense of whether you have actual celiac disease or simply a gluten intolerence. As you're well aware, celiac disease is very serious...if it's not treated with a strict gluten-free diet it can lead to osteoporosis, cancer, etc. Do be aware, though, that if you're already gluten-free the results may not be accurate.

My own approach was to take a if/then approach: I was tested by enterolab, and I decided that if the results were positive, I'd 1) get a conventional blood test for celiac, and 2) do a trial strict gluten-free diet for at least 3-4 months. If the blood tests were positive, I'd get a biopsy.

I know that occasionally someone will be blood test negative but biopsy positive for celiac, but statistics do suggest that that is unusual. For me, getting the negative blood tests was proof enough that I don't have actual celiac disease (the biopsy is invasive and nasty and I'd prefer to avoid if if not necessary), but it is a personal choice.

I'm finding that the gluten-free diet is helping, and that fact, along with my enterolab results, suggests to me that I have a gluten intolerance. My next step is going to be to stick with the diet strictly for a few more months, and then do a gluten challenge. If eating gluten causes me to backslide, I'll have my answer.

In my opinion (and this is ONLY my opinion), the only difference between having a gluten intolerance and actual celiac disease is the potential seriousness of the consequences of eating gluten. If I had celiac disease, I would view it as potentially a matter of life or death to avoid gluten absolutely strictly. With a gluten intolerance, I think you can let the very occasional slip-up slide without seriously endangering your health.

I think this is something everyone has to work out for themselves, however.

Anyway, good luck! How's the gluten-free diet working for you, BTW? iI think you strated around the same time I did.

Alice

JerryK Community Regular
Anyway, good luck! How's the gluten-free diet working for you, BTW? iI think you strated around the same time I did.

Alice

Hi, thanks for your comments. The gluten-free diet seemed to help huge with my gastro symptoms and energy levels. I stayed on it for a couple weeks, but have since gone back to a normal diet, because I want to chase blood tests and possible biopsy. I felt horrid when I went back on. Terribly depressed, lethargic, irritable and gastro symptoms came back. I plan to tough it out for several weeks and go for a blood test. Jerry

JerryK Community Regular
I think it's a very good idea to get the blood tests, so that you have a better sense of whether you have actual celiac disease or simply a gluten intolerence. As you're well aware, celiac disease is very serious...if it's not treated with a strict gluten-free diet it can lead to osteoporosis, cancer, etc. Do be aware, though, that if you're already gluten-free the results may not be accurate.

My own approach was to take a if/then approach: I was tested by enterolab, and I decided that if the results were positive, I'd 1) get a conventional blood test for celiac, and 2) do a trial strict gluten-free diet for at least 3-4 months. If the blood tests were positive, I'd get a biopsy.

I know that occasionally someone will be blood test negative but biopsy positive for celiac, but statistics do suggest that that is unusual. For me, getting the negative blood tests was proof enough that I don't have actual celiac disease (the biopsy is invasive and nasty and I'd prefer to avoid if if not necessary), but it is a personal choice.

I'm finding that the gluten-free diet is helping, and that fact, along with my enterolab results, suggests to me that I have a gluten intolerance. My next step is going to be to stick with the diet strictly for a few more months, and then do a gluten challenge. If eating gluten causes me to backslide, I'll have my answer.

In my opinion (and this is ONLY my opinion), the only difference between having a gluten intolerance and actual celiac disease is the potential seriousness of the consequences of eating gluten. If I had celiac disease, I would view it as potentially a matter of life or death to avoid gluten absolutely strictly. With a gluten intolerance, I think you can let the very occasional slip-up slide without seriously endangering your health.

I think this is something everyone has to work out for themselves, however.

Anyway, good luck! How's the gluten-free diet working for you, BTW? iI think you strated around the same time I did.

Alice

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