Need Help Understanding Mayo Results

[jaggirl47]

My son’s PCP ordered the lab testing through Mayo, and it shows the results are following the cascade with regard to my son having a low total IGA. From what I am reading in the algorithm, he most likely has celiac or “pre” celiac.

Results:

tTG IGA <1.2 (normal <4)

tTG IgG 3.4 (normal <6)

DGP IGA <10 (normal <20)

DGP IgG 47.5 HIGH (normal <20)

EMA IgG Negative 

From the Mayo Clinic testing site, it has the following for DGP IgG:

”Positive test results for deamidated gliadin IgG antibodies, particularly in individuals who are IgA deficient, are consistent with a diagnosis of celiac disease.”

And on EMA IgG:

“A negative result (absence of circulating IgG-endomysial antibodies) does not exclude the diagnosis of dermatitis herpetiformis or celiac disease. 
Patients with mild gluten-sensitive enteropathy may have a negative result.“

The Mayo algorithm also states that with a DGP IgG that is positive, a biopsy should be done to confirm celiac disease, even when other tests are negative.

My son was tested around 10 years ago and is HLA DQ2. He has also suffered from anemia his entire life.

 

[Scott Adams]

I agree with the Mayo Clinic's assessment that you shared, and that the next step should be a biopsy via an endoscopy. 

Be sure he keeps eating gluten daily until all tests for celiac disease are completed. Normally they want you to eat 2 slices worth of wheat bread a day for at least 2 weeks before an endoscopy.

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. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.

 

 

[jaggirl47]

On 9/22/2023 at 1:39 PM, Scott Adams said:

I agree with the Mayo Clinic's assessment that you shared, and that the next step should be a biopsy via an endoscopy. 

Be sure he keeps eating gluten daily until all tests for celiac disease are completed. Normally they want you to eat 2 slices worth of wheat bread a day for at least 2 weeks before an endoscopy.

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. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.

 

 

My son saw the GI doctor on Tuesday, and just had his biopsies done Wednesday. I wasn’t expecting it to happen so fast lol.

A different GI doc did the EGD, and that doctor argued with us that DGP IgG does not count as a positive celiac test, only the TTG and IGA panels. He also said that if my son is staged by the Marsh scale, he doubts it is celiac and that it is instead damage from taking occasional ibuprofen. My son has low IGA, which is why Mayo tested him with IgG. He has low IGA 10 years ago as well, and his pediatric GI refused to test IgG tests.

We are expecting the biopsy results to be back between Monday and Wednesday next week. The GI doctor did say my son has pretty severe EoE, even without having the biopsies back. He said that was extremely evident. My son did get diagnosed with that 10 years ago, but the pediatric GI said it didn’t require any treatment. Now my son may have permanent damage from not treating it previously.

My son was on a full gluten diet, though now he has switched to gluten free following the biopsies. When I had him on gluten free previously, he did amazing on it.

[Scott Adams]

I find it very strange that your son's doctor would dismiss his positive DGP IgG test results (47.5 HIGH -normal <20), especially given that he has low IgA (this test is for those with low IgA). As the article states:

Quote

The sensitivity of the DGP-IgG test is reported to range from 75% to 85%, which means it can correctly identify individuals with the condition in about 75% to 85% of cases. The specificity of the DGP-IgG test is reported to range from 75% to 95%, which means it can correctly identify individuals without the condition in about 75% to 95% of cases.

I find it even more strange that this doctor would also dismiss his positive celiac disease biopsy results, given that he had highly positive DGP IgG test results--both of these results combined scream of celiac disease, especially if your son's symptoms go away on a gluten-free diet.

[jaggirl47]

2 minutes ago, Scott Adams said:

I find it very strange that your son's doctor would dismiss his positive DGP IgG test results (47.5 HIGH -normal <20), especially give that he has low IgA (this test is for those with low IgA). As the article states:

I find it even more strange that this doctor would also dismiss his positive celiac disease biopsy results, given that he had highly positive DGP IgG test results--both of these results combined scream of celiac disease, especially if your son's symptoms go away on a gluten-free diet.

We have had to deal with dismissive doctors his entire life, and it sucks.

We do not yet have the biopsy results yet, those are due back this week. I was rather shocked that he would assume ibuprofen damage rather than celiac. Between the positive DGP IgG and HLA DQ2 tests, it’s a no brainer to me. My son doesn’t show the GI issues, but he has everything else that points to celiac.

I will update everything once the results return. Regardless, he started a complete gluten free diet the day after his biopsy was done.

[jaggirl47]

My son’s biopsy results were posted this morning, and I am still frustrated. The GI doctor only took 2 samples from the distal duodenum and 2 from the duodenal bulb. I thought the standard called for 4 from the distal duodenum and 1-2 from the duodenal bulb?

Anyway, here are the results:

Esophagus, both distal and proximal, 8 samples taken. Squamous mucosa in both areas, EoE (which he was diagnosed with 10 years ago).

Stomach, 4 samples taken. Oxyntic and antral  mucosa with chronic inactive gastritis. With patient’s history, possible result autoimmune disorder. No Helicobacter seen on stained sections.

Duodenum, 2 samples distal duodenum and 2 samples duodenal bulb. Small bowel mucosa with congestion. Intact villous architecture. No increased intraepithelial lymphocytes.

So….he has inflammation to his duodenum, just no actual celiac diagnosis from the minimal samples he took. What do we do next? A second opinion? 
 

Going on the “4 out of 5 rule,” he has 4 out of the 5 criteria required to be diagnosed with celiac. He has the 1) classic signs and symptoms 2) DGP-IgG positive testing, 3) HLA-DQ2 positive, and 4) clinical response to gluten free diet. The ONLY thing he is missing is the villous atrophy, though he does have the duodenal inflammation.

[Scott Adams]

Might be easier to keep it in the same thread...

The biopsy results you provided indicate that there is no damage to the villi in the small intestine, and there are no increased intraepithelial lymphocytes. This finding suggests that there is no significant damage to the intestinal lining at the microscopic level, which is often seen in celiac disease.

It's important to note that celiac disease can present with a range of symptoms and may vary in its presentation. In some cases, there may be evidence of celiac disease in blood tests (like the elevated DGP IgG), but the intestinal biopsy may appear normal. This can occur if the disease is in an early stage or if the damage is patchy and not captured in the biopsy samples taken.

Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.

[jaggirl47]

40 minutes ago, Scott Adams said:

Might be easier to keep it in the same thread...

The biopsy results you provided indicate that there is no damage to the villi in the small intestine, and there are no increased intraepithelial lymphocytes. This finding suggests that there is no significant damage to the intestinal lining at the microscopic level, which is often seen in celiac disease.

It's important to note that celiac disease can present with a range of symptoms and may vary in its presentation. In some cases, there may be evidence of celiac disease in blood tests (like the elevated DGP IgG), but the intestinal biopsy may appear normal. This can occur if the disease is in an early stage or if the damage is patchy and not captured in the biopsy samples taken.

Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.

I’m pretty sure it’s not NCGS. He has had issues since infancy, and has suffered from anemia for 20 years. He had severely delayed growth, and his mature height is 3-4” less than his genetic height should be. We know he has anemia from malabsorption. I’m thinking a second opinion with more samples may be needed. Regardless, he is now on a gluten free diet. 

[Scott Adams]

If a formal diagnosis will help him stay on the diet, then it might make sense to pursue it, however, his future results might still put him in the "limbo zone" between celiac disease and NCGS. Either way, it sounds like he should remain gluten-free. 

[jaggirl47]

On 10/2/2023 at 6:53 PM, Scott Adams said:

Might be easier to keep it in the same thread...

The biopsy results you provided indicate that there is no damage to the villi in the small intestine, and there are no increased intraepithelial lymphocytes. This finding suggests that there is no significant damage to the intestinal lining at the microscopic level, which is often seen in celiac disease.

It's important to note that celiac disease can present with a range of symptoms and may vary in its presentation. In some cases, there may be evidence of celiac disease in blood tests (like the elevated DGP IgG), but the intestinal biopsy may appear normal. This can occur if the disease is in an early stage or if the damage is patchy and not captured in the biopsy samples taken.

Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.

Now just to throw in a little bit of confusion….

My son just had an upper GI fluoroscopy study last week and it confirms my belief that the EGD wasn’t as thorough as it should be. They found a mass in his stomach towards the duodenum, but it was completely missed on the EGD. In addition to only taking 2 samples from the duodenum, I’m a firm believer that the doctor did not take enough to properly diagnose.

In addition, my son has now been completely gluten free for almost 6 weeks. I am going to private message you a comparison picture because the change is astonishing.

[Scott Adams]

Hopefully the mass is nothing too serious...I assume they will diagnose it and treat it if necessary. 

The pictures you showed me definitely show he looks much better after being gluten-free, but be sure to follow up with his doctors about this mass that they found.

[jaggirl47]

5 minutes ago, Scott Adams said:

Hopefully the mass is nothing too serious...I assume they will diagnose it and treat it if necessary. 

The pictures you showed me definitely show he looks much better after being gluten-free, but be sure to follow up with his doctors about this mass that they found.

They don’t believe it’s cancerous, but he has a nuclear medicine study in 2 weeks 

 

I still don’t know how on earth the GI doctor missed that during the EGD