Weak positive

[lorishaw]

Hi all! I  am new here. Recently I had a celiac blood panel done. Everything was normal except for two things. My tgg-iga was a weak positive (I had a 4.6 where <4.0 is negative) and my Immunoglobulin A (IgA), S was low (I had 60 where 61-356 is normal). With these results I thought I was surely negative. The GI said that these results are indicative of celiacs. I have an endoscopy Monday. Does anyone else have experience with this? Is a weak positive truly a positive? Could it just be a fluke? Thank you!

[trents]

Welcome to the forum, @lorishaw!

One factor you are likely not aware of is that your low Immunoglobulin A (IgA) (what we typically refer to as "total IGA") would cause the TTG-IGA test score to be artificially low. Low total IGA (or IGA deficiency) suppresses individual IGA test scores. It is not itself an antibody test for celiac disease but if it is low it will influence those that are. In other words, if your Immunoglobulin A (IGA) were within normal range your TTG-IGA score would likely have been more strongly positive. There are a number of antibody tests that can be run when diagnosing celiac disease and it is important to realize that it only takes one of them being positive in order to point to celiac disease. The TTG-IGA is the most popular test run by physicians and often the only one. Kudos to your doc for doing a more complete celiac panel. 

Celiac disease causes inflammation to the villous lining of the small bowel when gluten is consumed which eventually and over time damages the lining and inhibits nutrient absorption. The antibody tests are designed to detect the inflammation markers that show up in the blood. The endoscopy/biopsy is designed to visually (and microscopically) examine the damage to the villous lining and is used to confirm the results of a positive antibody test. Generous amounts of gluten should be consumed daily until both kinds of testing are complete. Beginning a gluten free diet weeks or months ahead of testing will sabotage the test results.

[Scott Adams]

This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. 

 

 

[lorishaw]

  On 7/24/2024 at 4:46 PM, trents said:

Welcome to the forum, @lorishaw!

One factor you are likely not aware of is that your low Immunoglobulin A (IgA) (what we typically refer to as "total IGA") would cause the TTG-IGA test score to be artificially low. Low total IGA (or IGA deficiency) suppresses individual IGA test scores. It is not itself an antibody test for celiac disease but if it is low it will influence those that are. In other words, if your Immunoglobulin A (IGA) were within normal range your TTG-IGA score would likely have been more strongly positive. There are a number of antibody tests that can be run when diagnosing celiac disease and it is important to realize that it only takes one of them being positive in order to point to celiac disease. The TTG-IGA is the most popular test run by physicians and often the only one. Kudos to your doc for doing a more complete celiac panel. 

Celiac disease causes inflammation to the villous lining of the small bowel when gluten is consumed which eventually and over time damages the lining and inhibits nutrient absorption. The antibody tests are designed to detect the inflammation markers that show up in the blood. The endoscopy/biopsy is designed to visually (and microscopically) examine the damage to the villous lining and is used to confirm the results of a positive antibody test. Generous amounts of gluten should be consumed daily until both kinds of testing are complete. Beginning a gluten free diet weeks or months ahead of testing will sabotage the test results.

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Thank you so much! This is actually really helpful. I was feeling as if maybe I was making it up in my head a little bit. I’m kind of a nervous Nancy so the sudden potential for something I have not considered is throwing me through a loop. I appreciate your response!

[lorishaw]

  On 7/24/2024 at 4:49 PM, Scott Adams said:

This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. 

 

 

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It is! Thank you! I guess I’m still confused about why a weak positive is labeled as such. Does that mean it is less likely it is celiacs?

[trents]

Lori, I suppose it is true that a weak positive antibody test score makes it less certain that it could be celiac disease and more likely something else. But because you are IGA deficient, the water is a little muddied in that regard. You will likely have some more definitive answers soon after your procedure on Monday, probably within a week or two. But let me ask you. What symptoms do you have? What prompted this testing for celiac disease in the first place?

[Scott Adams]

In all honesty that designation is fairly recent, and very confusing--what I really think it means is that for patients OR doctors who really don't like the concept of a lifelong gluten-free diet it provides a way for either to "copout" on making an official diagnosis.

There isn't for example, a "strong-negative" designation, where you might score 19/20, for example, and you may actually have detected celiac disease early, before you have villi damage. I can't think of any reason for this designation, as there is no mild form of celiac disease. I suppose one possible reason for it might be that you could be catching the disease early, before serious villi damage, which is a good thing, however, this designation is being abused, which can be seen over and over in threads on this board. Many patients and doctors think they don't have it when they hear "weak positive."

[lorishaw]

  On 7/24/2024 at 5:14 PM, trents said:

Lori, I suppose it is true that a weak positive antibody test score makes it less certain that it could be celiac disease and more likely something else. But because you are IGA deficient, the water is a little muddied in that regard. You will likely have some more definitive answers soon after your procedure on Monday, probably within a week or two. But let me ask you. What symptoms do you have? What prompted this testing for celiac disease in the first place?

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I’ve always had what I call ‘Tummy troubles’. But more specifically gas, bloating, issues in the bathroom, stomach aches, etc. The celiac panel was actually run by my GP as a way to better prepare me for my GI visit. We were not exactly suspecting celiacs, more so looking to cross it off the list and move towards a different diagnosis (we had though IBS). Which is why I’m so suprised after meeting with the GI. I guess, after reading much in this thread, I  am very thankful for my doctors to have taken the time to do a full celiac panel and ordered the endoscopy. It seems that many doctors do not take such steps.

[lorishaw]

  On 7/24/2024 at 5:15 PM, Scott Adams said:

In all honesty that designation is fairly recent, and very confusing--what I really think it means is that for patients OR doctors who really don't like the concept of a lifelong gluten-free diet it provides a way for either to "copout" on making an official diagnosis.

There isn't for example, a "strong-negative" designation, where you might score 19/20, for example, and you may actually have detected celiac disease early, before you have villi damage. I can't think of any reason for this designation, as there is no mild form of celiac disease. I suppose one possible reason for it might be that you could be catching the disease early, before serious villi damage, which is a good thing, however, this designation is being abused, which can be seen over and over in threads on this board. Many patients and doctors think they don't have it when they hear "weak positive."

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When you put it into the perspective of a strong/weak negative, that does make the ‘weak positive’ sound odd. I have scoured the internet and have been unable to find a statistic that will tell me who often a weak positive is a confirms case of celiacs after biopsy. I just assumed, as you have noted here, that I was likely fine. Interesting enough I had elevated liver enzymes in my blood work as well. My GP found it strange, but there was no indication why this would be. Upon further research, I have found that elevated liver enzymes can be correlated to celiacs. Very crazy. I’m nervous to see what the biopsy says.

[trents]

Lori, elevated liver enzymes was what led eventually to my celiac diagnosis. This is experienced in about 20% of those with celiac disease but most general medicine doctors would not know that. It is not a "classic" celiac disease symptom and most GPs are not trained beyond an awareness of the classic GI symptoms along with maybe anemia and osteoporosis. There are over 200 symptoms and associated diseases that have now been associated with celiac disease but there is still a lot of ignorance in the medical community at large with regard to all this. That's what makes an online community like this one with a special focus so valuable.

[Scott Adams]

There is definitely a connection between celiac disease and liver issues, and we have a category of research summaries on this topic:
https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/liver-disease-and-celiac-disease/