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Anybody Out There Who Tested Negative For Celiac

danikali

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danikali Enthusiast
danikali
Posted

I was just wondering if anyone out there has ever tested negative for Celiac Disease and then years later, tested for it again and got positive results.....

I mean, could someone be in such early stages of this disease that it is impossible to detect anything more than a sensitivity and then eventually, it turns into full blow Celiac Disease?

Also, I tested positive for the fecal Antigliadin IgA, so how serious is this? Does this mean I can eat it every once in a while, a small amount, or should I avoid it like the plague as if I have Celiac Disease?

I'm starting to think I shouldn't deprive myself completely unless I have a real autoimmune problem with it. :unsure:

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aikiducky Apprentice
aikiducky
Posted

I posted a couple days ago about a woman on another board who had had three rounds of testing, only the last one showed positive. I don't remember how much time had gone between the first round of testing and the last, but I think it was a few years.

When you think about it logically, of course it's possible to start showing symptoms first before there is detectable damage. The damage gets worse over time, so it has to start somewhere, right?

Personally I would either go completely gluten-free, and only change that if I still had all the symptoms in a years time or so, OR keep eating good doses of gluten, so that hopefully there could be a chance for a clear test result later.

Keep in mind that a lot of people get worse before they get better on the diet. It's not wise to try to evaluate the effects too soon.

Pauliina

floridanative Community Regular
floridanative
Posted

My first GI told me that you could have some symptoms of celiac disease (or gluten intolerance) and if in early stages it may or may not show up in the first biopsy. He also left untreated eventually the biopsy would show damaged villi.

danikali Enthusiast
danikali
Posted
  • Author

Thanks. I know, I have to keep that in mind. I guess I really should give it a while. It's only been 2 weeks!

VydorScope Proficient
VydorScope
Posted

Absolutly! If you know have a postive test result you need go gluten-free, you have celiac disease.

The only reason to NOT go gluten-free is if you want to do enough damage to actually show up in the tests.

nettiebeads Apprentice
nettiebeads
Posted

We now know that there are way more false negatives with these tests than are positive. My dr said that the tests still aren't sensitive enough to thoroughly test for celiac. But since you had a positive, you know what you have to do. And believe me, after awhile the gluten-free diet will become second nature. And you will SO enjoy being healthy that it will be very easy to avoid gluten items. It will become ingrained Gluten=bad,

gluten-free=GOOD!

:) Annette

lopo7883 Rookie
lopo7883
Posted

In regard to blood test results, are there any precursors to testing positive? Like would a certain antibody be raised but not necessarily over the top limit of the reference range?

If you have a tendency to have bouts of stomach problems for a while to be followed by periods of time with no real issues, could that also affect the results of a blood test?

If so - can you get genetic testing to help see if you have celiac- and where do you get this testing from if it is helpful?

Thanks! :)

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VydorScope Proficient
VydorScope
Posted
In regard to blood test results, are there any precursors to testing positive? Like would a certain antibody be raised but not necessarily over the top limit of the reference range?

Yes, (at least?) two things will impact the blood test.

1) If your IgA decificent (like me), and your doc ONLY does the IgA test, which is calimed to be 99% accurate, then you will show NOT celiac disease, reguardless of anything else. The only way to beat this is to have all of the celiac disease blood tests done. Theres 5 total, but even if you got 4 of them you ebe better off...

2) You have not been eating SUFFENICENT quanties of gluten for sufficent period of time to trigger enoungh damage/antibodies to detect. How much is enought? Short answer 2-3 slices a bread every day for 2-3 months, long answer : https://www.celiac.com/st_main.html?p_catid=2

lopo7883 Rookie
lopo7883
Posted
Yes, (at least?) two things will impact the blood test.

1) If your IgA decificent (like me), and your doc ONLY does the IgA test, which is calimed to be 99% accurate, then you will show NOT celiac disease, reguardless of anything else. The only way to beat this is to have all of the celiac disease blood tests done. Theres 5 total, but even if you got 4 of them you ebe better off...

2) You have not been eating SUFFENICENT quanties of gluten for sufficent period of time to trigger enoungh damage/antibodies to detect. How much is enought? Short answer 2-3 slices a bread every day for 2-3 months, long answer : https://www.celiac.com/st_main.html?p_catid=2

Hi-

I dont think I'm IgA deficient. I just had a blood test done by my doctor and the results were negative. My IgA was an 8 (ref range <11= negative). My Serum IgA was 162 (ref range 81-463). My serum IgA seems low, but I dont know if that would impact a test at all. My doctor advised me to go on a gluten free diet becuase she thought the IgA antibodies were too high at 8, even though they weren't over 11. I dont know if that would be impacted by a serum IgA in the low range of the scale.

I was just wondering if maybe that was indicating that it might be in the works for the future... I already have hashi thyroid disease so maybe my doctor figures that its there regardless of the results cause i have some other symptoms? the only test i didn't get was ema because quest labs didn't feel it was necessary.

when i took the test i was eating gluten, i wasn't really monitoring it to make sure i ate a ton, but i hadn't been gluten free really, just more low carbs... the day of the test all i had was an oatmeal granola bar and sushi though ? would that affect it? probably not i dont think...

VydorScope Proficient
VydorScope
Posted
when i took the test i was eating gluten, i wasn't really monitoring it to make sure i ate a ton, but i hadn't been gluten free really, just more low carbs... the day of the test all i had was an oatmeal granola bar and sushi though ? would that affect it? probably not i dont think...

1 day either way wont make a difference. "Low carb" is normally low wheat/flour and that WILL impact it.

Claire Collaborator
Claire
Posted

I have to bite my tongue here. I could really make somebody really mad!

Gluten does nasty nasty damage to the body.

Certainly you can test by eating it continually until real damage can be 'proven'. By then you have a problem or maybe many problems - instead of what you have now. If you push your luck you will most certianly develop other autoimmune diseases. Your intestinal lining will be a mess. Or perhaps your brain will be damaged and you will have to deal with the neurlogical results of that.

How could there possibly be any choice here?

Sorry, I am opinionated. Claire

nettiebeads Apprentice
nettiebeads
Posted
I have to bite my tongue here. I could really make somebody really mad!

Gluten does nasty nasty damage to the body.

Certainly you can test by eating it continually until real damage can be 'proven'. By then you have a problem or maybe many problems - instead of what you have now. If you push your luck you will most certianly develop other autoimmune diseases. Your intestinal lining will be a mess. Or perhaps your brain will be damaged and you will have to deal with the neurlogical results of that.

How could there possibly be any choice here?

Sorry, I am opinionated. Claire

Nope, not opinionated, just bluntly factual. Even though I was dx'd with celiac disease 9 years ago, I didn't want to do w/o my cereal and light drinks. I ignored the word malt for years thinking I was okay - I didn't have the overt symptoms of being glutened. But after nine years of this, I finally joined the forum and realized what I was doing to myself. I had been experiencing numbness to my face and legs (felt like I was walking on stumps most mornings) and had attributed to aging or something else. This forum made me realize the link between neurapathy and gluten. I confessed what I had been doing to my dr, he believes it'll take 12 to 18 months of being REALLY gluten-free this time to undo the damage. But my legs are getting better. DO THE gluten-free diet if your dr recommended it. It's only your health for the rest of your life.

Annette

lopo7883 Rookie
lopo7883
Posted
I have to bite my tongue here. I could really make somebody really mad!

Gluten does nasty nasty damage to the body.

Certainly you can test by eating it continually until real damage can be 'proven'. By then you have a problem or maybe many problems - instead of what you have now. If you push your luck you will most certianly develop other autoimmune diseases. Your intestinal lining will be a mess. Or perhaps your brain will be damaged and you will have to deal with the neurlogical results of that.

How could there possibly be any choice here?

Sorry, I am opinionated. Claire

Hi, I am actually following a gluten free diet right now. My doctor said she thought if it helped with any/all stomach problems I may have then why not give it a shot. My blood tests though are overwhelmingly negative. I posted them in a previous post but I think I may have given the only two that I thought might be slightly abnormal above in the post... but I could be wrong. I already have an autoimmune disease- hashis, but that runs in my family and no one else in my fam has been diagnosed with celiac- not to say that it isn't possible, but still i'm the pioneer.

So, I see what you mean in your post, and because of the interest of my doctor I am trying out a gluten free lifestyle, so that I am not opposed to. Perhaps I should rephrase the question that I originally posted, which was, my tests levels right now though normal, are they really normal? What should antigliadin IgA antibodies really be? and what is the ideal level for IgA serum? I am very active in regard to my thyroid health, and know that although quest- or any lab really- has ranges of oh say .05-5.5, but ideally most people will want to be between a 1-2 or even lower.

So I'm just new to this and still very confused. And I dont want to assume I have celiac disease if I really dont have it... not because I really want bread beer and cake made with pure gluten, but more because I dont want to claim to have an issue that is really just not there.

Although, I will say one thing. I certainly eat sooooooo much healthier on a gluten free diet. :D

Thanks for your advice!

Susan123 Rookie
Susan123
Posted

I have always had a positive IgA level and a negative Tissue Transglutiminase. I had a biopsy- no damage and had another biopsy almost two years later after eating gluten the whole time and still no damage. Who knows right? I am now gluten-free even thought I never had symptoms. I also have a wheat allergy diagnosed through the skin test which puts a wrench in things!

eeyor-fan Contributor
eeyor-fan
Posted
I was just wondering if anyone out there has ever tested negative for Celiac Disease and then years later, tested for it again and got positive results.....

I mean, could someone be in such early stages of this disease that it is impossible to detect anything more than a sensitivity and then eventually, it turns into full blow Celiac Disease?

Also, I tested positive for the fecal Antigliadin IgA, so how serious is this? Does this mean I can eat it every once in a while, a small amount, or should I avoid it like the plague as if I have Celiac Disease?

I'm starting to think I shouldn't deprive myself completely unless I have a real autoimmune problem with it. :unsure:

I tested negative on my biopsi even though before and since my blood tests keep comping back very stong positive.

Hugs

Bridget

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