Child with repeat low positive TTG IGA

[Sareliza]

Hello,

My 8 year old has tested positive three times on his TTG IGA over the past 1.5 years with results consistently a low to mid positive (most recently 12 U/ml with 7 or under being normal which is down from 76 last year, despite still eating gluten).  His ferritin is also low, and he has low lymphocytes. 

He has weekly migraines with dizziness, stomach aches, canker sores in his mouth, and 4 or more bowel movements per day (if he can’t get to a toilet, he is nauseated and sometimes vomits).

Unfortunately, because we are in Canada, there is hesitancy to biopsy him and so he hasn’t been referred to a gastro (wait time can be 3 years so they prefer only to test the really high positives and there is some indication his low positive does not even qualify for a referral)
 

Is it possible the low positive is just nothing or should we keep pushing for the scope? I hate to have him suffer if maybe all his symptoms are just the low iron. I’ve read conflicting thoughts from a positive is a positive no matter how low, to a low positive might just be infection etc. I’d appreciate thoughts, especially from fellow Canadian families.

thank you!

 

[trents]

Welcome to the forum, Sareliza!

Have any celiac antibody tests besides the tTG-IGA been run on your son and has his total IGA been checked? If total IGA is low then it can cause individual IGA scores, such as the tTG-IGA, to be lower and even cause false negatives. I certainly would push for a total IGA test just to be sure his other IGA scores are being evaluated on level ground as it were. The tTG-IGA is considered the best all around test for detecting celiac disease but it is not perfect. There are other antibody tests that can be run which can give a fuller picture and sometimes catch celiac disease when, in the small percentage of cases, the tTG-IGA gives a false negative.

Any elevation of tTG-IGA scores above normal can indicate celiac disease and your son's symptoms are classic for celiac disease, even the migraines. 

Another approach to diagnosing his issues is to put him on a strict gluten free diet for a few months and see if his symptoms improve. Just be aware that once you begin a gluten free diet, all testing for celiac disease would be invalidated. And going back on gluten for the recommended 6-8 weeks to repeat antibody tests may be very difficult because once we go off gluten for an extended period of time we lose whatever tolerance we may have had. Symptoms would likely be worse.

I am including two attachments that might be helpful. One is a primer for celiac antibody testing. The other is a primer for implementing a gluten free lifestyle.

 

[Sareliza]

Thanks Trents. 
He did have a normal total IGA but hasn’t had any tests beyond that and the standard tTG-IGA.  We are reluctant to proceed with gluten free for the reason you mentioned until we have had a GI consult. I will look into having the other serology run to see if it can give us a clearer picture though. 

[Scott Adams]

  On 10/26/2023 at 5:11 PM, Sareliza said:

My 8 year old has tested positive three times on his TTG IGA over the past 1.5 years with results consistently a low to mid positive (most recently 12 U/ml with 7 or under being normal which is down from 76 last year, despite still eating gluten).  His ferritin is also low, and he has low lymphocytes. 

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If he has tested positive 3 times with a tTg-IgA blood test, why is he still eating gluten? The test results you mention here: "12 U/ml with 7 or under being normal which is down from 76 last year" are not "low to mild" positives--they are strongly positive. If he had a reading of 76 last year, and the cut off was the same at 7 (not sure but be sure to check this), it would mean over 10x the positive level. In Europe they now diagnose children without a biopsy if they reach 10x or more from the positive level.

What are you doctors not understanding here about these test results?

[Sareliza]

Scott, 

Our Province requires two tests at 10x above normal spaces one month apart to qualify under the European rules and because his level went down to 12 he doesn’t qualify. He apparently needs to have a repeat test at least 2x Upper limit of normal to get a referral and anything other than that is just followed by repeat blood work. His 12 result pushed him back into that category so he needs to stay on gluten and just keep getting tested. Very frustrating. 

[trents]

  On 10/26/2023 at 5:57 PM, Sareliza said:

Thanks Trents. 
He did have a normal total IGA but hasn’t had any tests beyond that and the standard tTG-IGA.  We are reluctant to proceed with gluten free for the reason you mentioned until we have had a GI consult. I will look into having the other serology run to see if it can give us a clearer picture though. 

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More complete serology testing through your provincial/national healthcare system might be difficult to obtain. However, there are third party labs that do this for private pay. Do you have a GI consult scheduled yet?

[Sareliza]

  On 10/26/2023 at 6:32 PM, trents said:

More complete serology testing through your provincial/national healthcare system might be difficult to obtain. However, there are third party labs that do this for private pay. Do you have a GI consult scheduled yet?

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Not yet. We were told we might get an appointment in 3 years. There is a huge wait list. 

[trents]

  On 10/26/2023 at 6:49 PM, Sareliza said:

Not yet. We were told we might get an appointment in 3 years. There is a huge wait list. 

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Three years? That's ridiculous! Okay, in that case I'm changing my recommendations. I feel strongly that you need to place your son on a strict gluten free diet NOW and see if his symptoms improve. If you wait three years you are risking damage to his body systems. If he has celiac disease (and all current indicators suggest he does) you risk stunted growth curve through nutritional deficiencies. Celiac disease damages the villous lining of the small bowel and this is the area of the digestive track where essentially all of the nutrition from the food we eat is absorbed. As the damage progresses over time the efficiency of nutrient absorption decreases. At his age he is at risk for stunted growth and weakened bones, anemia (his iron levels are already low) and even neurological damage. There are a host of other nutrition deficiency diseases that can occur. 

[Sareliza]

  On 10/26/2023 at 7:12 PM, trents said:

Three years? That's ridiculous! Okay, in that case I'm changing my recommendations. I feel strongly that you need to place your son on a strict gluten free diet NOW and see if his symptoms improve. If you wait three years you are risking damage to his body systems. If he has celiac disease (and all current indicators suggest he does) you risk stunted growth curve through nutritional deficiencies. Celiac disease damages the villous lining of the small bowel and this is the area of the digestive track where essentially all of the nutrition from the food we eat is absorbed. As the damage progresses over time the efficiency of nutrient absorption decreases. At his age he is at risk for stunted growth and weakened bones, anemia (his iron levels are already low) and even neurological damage. There are a host of other nutrition deficiency diseases that can occur. 

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Thank you for the advice. Yes, while his weight is okay his height growth curve has started to fall off and iron continues to lower as well. We go into our GP again next week to review so we will push for an expedited scope and if that fails I think you are right that we need to drop the gluten and see how he does. Thank you again. 

[Wheatwacked]

What benefits does he reap by his suffering, praying for another 70?

    Once off gluten he will quickly heal with a diet and supplementation of low intake vitamins.  He will grow and probably be heathier of his classmates.

There is an accurate blood test for D. Thiamine and choline the test is supplement and see what improves.  Even continuing the gluten torture, he can take the vitamins.  Gluten or not vitamins definitely have their own effects.

Vitamin D is essential.  Preferably a high dose because his is low.

Thiamine B1 and Choline will help digestion.  With less gut pain he gets more active.

Iodine healing, muscles, testoterone, sharpness of thinking.

[Scott Adams]

  On 10/26/2023 at 6:12 PM, Sareliza said:

Scott, 

Our Province requires two tests at 10x above normal spaces one month apart to qualify under the European rules and because his level went down to 12 he doesn’t qualify. He apparently needs to have a repeat test at least 2x Upper limit of normal to get a referral and anything other than that is just followed by repeat blood work. His 12 result pushed him back into that category so he needs to stay on gluten and just keep getting tested. Very frustrating. 

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I agree with @trents and have never heard such a bizarre set of rules for celiac disease diagnosis. Your son has clear symptoms, and has tested positive on multiple tTg-IgA blood tests, and does not have IGA deficiency--why on Earth would any doctor recommend that you keep feeding him gluten? Please ask your doctor to point you to the written recommendations that they are following--there should be documentation somewhere that support their diagnostic procedure. I would definitely be interested in reading them and writing an article about them.

A link to their diagnostic criteria would be great...

[Scott Adams]

Here is more info on European standards:

 

[Sareliza]

  On 10/26/2023 at 10:37 PM, Scott Adams said:

I agree with @trents and have never heard such a bizarre set of rules for celiac disease diagnosis. Your son has clear symptoms, and has tested positive on multiple tTg-IgA blood tests, and does not have IGA deficiency--why on Earth would any doctor recommend that you keep feeding him gluten? Please ask your doctor to point you to the written recommendations that they are following--there should be documentation somewhere that support their diagnostic procedure. I would definitely be interested in reading them and writing an article about them.

A link to their diagnostic criteria would be great...

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This from the BC Children’s Hospital celiac referral guidelines for Physicians: 

Patients who have two readings of tTG > 10 ULN (spaced by 1 month) are considered to meet non-biopsy diagnosis criteria for celiac disease with an accuracy of > 95% . Referred patients will be reviewed by our dietitians and teachings related to gluten free diet will take place.

 

Patients with tTG > 2 ULN and < 10 ULN should still go on to have upper endoscopy and biopsies (after consultation). It is important these patients remain on a gluten containing diet. 

 

Patients with tTG readings < 2 ULN should should be followed with serial readings and should not implement a gluten free diet. Readings at this level are non-specific and may not be accepted for review.‎

[Sareliza]

  On 10/26/2023 at 10:43 PM, Sareliza said:

This from the BC Children’s Hospital celiac referral guidelines for Physicians: 

Patients who have two readings of tTG > 10 ULN (spaced by 1 month) are considered to meet non-biopsy diagnosis criteria for celiac disease with an accuracy of > 95% . Referred patients will be reviewed by our dietitians and teachings related to gluten free diet will take place.

 

Patients with tTG > 2 ULN and < 10 ULN should still go on to have upper endoscopy and biopsies (after consultation). It is important these patients remain on a gluten containing diet. 

 

Patients with tTG readings < 2 ULN should should be followed with serial readings and should not implement a gluten free diet. Readings at this level are non-specific and may not be accepted for review.‎

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So what happened with respect to these guidelines is that when he first tested positive in the 70’s they said they would not take the referral unclear he tested positive over 10x a second time. But his number dropped to 12 which is just under 2x the limit so now he doesn’t really meet referral guidelines. 

[Scott Adams]

  On 10/26/2023 at 10:43 PM, Sareliza said:

Patients with tTG > 2 ULN and < 10 ULN should still go on to have upper endoscopy and biopsies (after consultation). It is important these patients remain on a gluten containing diet. 

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This part makes no sense at all to me. Why would there be a 10 ULN cut off on the upper end? So if you have 11 ULN - 70 ULN you can't get a biopsy...but if his reading was 2 ULN lower he could? I don't understand this at all. It makes no sense, and his blood test results so far would clearly lead to an endoscopy in every other country that I know of. 

[Scott Adams]

Have a look at this article: