Understanding Test Results

[Jennie6308]

My doctor's office is closed to Monday, so I won't know anything to then, but I'm trying to understand - does this mean Celiac is ruled out or in? She mentioned an endoscopy if I was positive... Any help is appreciated - even if it's to point me in the right direction to learn more.

My levels are (>15 is considered positive by Quest, who did my labs, for the antibodies):

TTG IGG - 71.2 (high)

TTG IGA - 8.8 (normal)

Gliadin (DEAMIDATED) AB (IGG) - 2.9 (normal)

Gliadin (DEAMIDATED) AB (IGA) - 9.9 (normal)

IGA - 158 (normal)

 

My understanding is that the Mayo Clinic's guidelines are the best, and it looks like that puts my TTG IGA as a weak positive. I do have IDA (have had infusions), vitamin D, B12, and folate deficiencies (actively treating), as well as Hashimotos (formerly Graves)... I also have swollen/sore joints, constipation/diarrhea, stomach pains, ADHD, depression, anxiety, and severe brain fog at times.

If this is celiac disease, I believe my symptoms started in 2015 with an adverse reaction to some meds I had taken ... I gained a ton of weight that summer from doing absolutely nothing different (my Graves swapped to Hashimotos with my antibodies hitting over 600, I developed the Iron deficiency anemia and Vit D deficiency then too.  Probably the others as well but those just got tested recently)

Any thoughts?

[Jennie6308]

I should add that I (this test was a surprise) have been on low dose naltrexone for inflammation for the past few weeks, and as Im actively trying to loose weight, have been on a reduced carb diet (most coming from fruit, dairy, etc) so inadvertently lower gluten.  I'm definitely not eating 4-6 slices og bread daily ...

[trents]

Welcome to the forum, @Jennie6308!

Yes, the reduction in gluten intake from the low carb diet of the past few weeks could certainly have pushed the scores in the TTG-IGA antibody test downward toward the negative range. It might also compromise the results of an endoscopy/biopsy. I'm wondering also if the Naltrexone therapy would suppress celiac antibody test numbers as well and I also wonder if it could compromise the results of an endoscopy biopsy by promoting healing of the small bowel villous lining.

On a positive note (no pun intended) your doctor had the foresight to order the TTG-IGG antibody test which was positive and certainly could indicate celiac disease. The TTG-IGG test is not quite as specific for celiac disease as is the TTG-IGA test, however. You also have some classic symptoms of celiac disease and at least one other auto immune condition (Hashimotos) that has a statistical affinity with celiac disease.

If you go forward with an endoscopy/biopsy and it is inconclusive, or even if that doesn't happen, I would suggest you trial a gluten free diet for some months to see if your symptoms improve. You are in an "darned if you do and darned if you don't space" when it comes to the gluten challenge and trusting the validity of any testing for celiac disease because of having to manage other health issues.

Edited July 20, 2024 by trents

[RMJ]

1 hour ago, Jennie6308 said:

My levels are (>15 is considered positive by Quest, who did my labs, for the antibodies):

TTG IGG - 71.2 (high)

TTG IGA - 8.8 (normal)

Gliadin (DEAMIDATED) AB (IGG) - 2.9 (normal)

Gliadin (DEAMIDATED) AB (IGA) - 9.9 (normal)

IGA - 158 (normal)

My understanding is that the Mayo Clinic's guidelines are the best, and it looks like that puts my TTG IGA as a weak positive. 

I’m not sure what you mean about using Mayo Clinic’s guidelines to put your TTG IgA as a weak positive.  Results should be compared to the standard range of the lab doing the test, because different labs use different units. So per Quest, your TTG IgA is negative and IgG is positive and fairly high. 

It is great that your doctor ordered the full panel.  They don’t all have to be positive to indicate celiac disease.  It is NOT ruled out at this point.  An endoscopy would be the next step, eating plenty of gluten for several weeks beforehand.

[trents]

@Jennie6308, there are no industry standards for scaling the results of celiac antibody tests. Each lab develops their own test parameters. So, the only thing that counts is what the lab used that did the analysis of your celiac antibody test blood samples.

[StudyofOne]

Hi Jennie!  I am new to the forum.  I posted a short time ago about my higher IGG results with normal IGA results.  In my case, I believe my higher IGG numbers were the result of a dairy immune reaction.  Bovine proteins are similar to gluten and can cause an immune reaction in people with the celiac genotypes.  You say that you had been on a low carb diet and had been consuming dairy.  The reason that I think mine was dairy is because I tested just after quitting dairy, and then re-tested 3 weeks later, after significantly upping my gluten intake.  My IGG numbers went down.  My gliadin IGG went down a lot--from 18 to 4.  My gluten consumption went way up and dairy went to zero.  Just adding this as something for you to consider.  Casein intolerance and celiac can travel together, or sometimes it is only the casein intolerance.  The genes only make these things a possibility, not a certainty.

[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. 

 

 

[Jennie6308]

Thanks everyone!

My doctor mentioned the Mayo Clinics guidelines, which is why I referenced them, and the units of measure are the same (perhaps I misunderstood her though).  Regardless, it looks like theirs an endoscopy in my future.  She should call tomorrow with results, and I'll remind her she has me on low dose naltrexone (and my lower carb diet) to see if I need to stop both in advance of the scope.  Shes an endocrinologist, so I'm sure I'll be referred out.  Makes me sad that I've been complaining something is wrong since 2015, but due largely to my weight gain that coincided with the uptick in symptoms, I've been brushed off and told to loose weight ...over and over again with no one caring that I was severely anemic and vitamin deficient

I'm just glad I found her, and shes helping/taking me serious.

 

Thanks again everyone!

 

[Jennie6308]

On 7/20/2024 at 1:01 PM, trents said:

Welcome to the forum, @Jennie6308!

Yes, the reduction in gluten intake from the low carb diet of the past few weeks could certainly have pushed the scores in the TTG-IGA antibody test downward toward the negative range. It might also compromise the results of an endoscopy/biopsy. I'm wondering also if the Naltrexone therapy would suppress celiac antibody test numbers as well and I also wonder if it could compromise the results of an endoscopy biopsy by promoting healing of the small bowel villous lining.

On a positive note (no pun intended) your doctor had the foresight to order the TTG-IGG antibody test which was positive and certainly could indicate celiac disease. The TTG-IGG test is not quite as specific for celiac disease as is the TTG-IGA test, however. You also have some classic symptoms of celiac disease and at least one other auto immune condition (Hashimotos) that has a statistical affinity with celiac disease.

If you go forward with an endoscopy/biopsy and it is inconclusive, or even if that doesn't happen, I would suggest you trial a gluten free diet for some months to see if your symptoms improve. You are in an "darned if you do and darned if you don't space" when it comes to the gluten challenge and trusting the validity of any testing for celiac disease because of having to manage other health issues.

Yes that's my thought too.  Low dose naltrexone is used for inflammation and management of autoimmune disorders, so it seems like that could have had some effect.  My (new) understanding of all this is people with no sensitivity (or no Celiac) have levels like less than 1, so Im going to do what Im told, but I think youre right-  accurate results from a biopsy would probably require a gluten challenge and going off LDN (both of which I dread)

[Scott Adams]

Many doctors mistakenly dismiss the possibility of celiac disease in those who are overweight, but there is a lot of evidence that shows that being overweight is fairly common in celiacs, and here is a category with our summaries of the studies on this topic:

https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/obesity-overweight-celiac-disease/