Blindsided and confused

[Shan-]

I took my 13 year old daughter in to get an allergy test. She has really bad seasonal allergies so I figured we would be testing for environmental things. We were told she could not do the skin test for allergies because of a medication she is on so they sent us in for blood testing. I asked them to test for everything while we were at it. She sometimes complains of stomach aches so I thought we would check for food allergies as well. 

We went in to go over the tests yesterday and the Dr told us her number is high and showed Celiac Disease. Here are her numbers:

tTG, IgG- 15 unit/mL (chart shows 10 U/mL or grater is positive) 

tTG, IgA- 2 unit/mL (the chart says 3U/mL or less is negative) 

 

Do both of these numbers need to be high to confirm Celiac Disease? I’m currently waiting for a call from a Pediatric GI to possibly do a biopsy to confirm. Just wondering if this blood test can also be used to confirm. This is all new to us and I’m a bit lost and overwhelmed. Thanks! 

[Scott Adams]

Welcome to the forum!

I agree with her doctor, and it only takes one positive test to indicate celiac disease, and her doctor may want to do a follow up endoscopy to confirm this. You should discuss this with her doctor, of course, but no matter the outcome of the endoscopy it would likely be wise for your daughter to go gluten-free, as her positive tTG, IgG test result is very specific to celiac disease, and indicates that she is having an autoimmune reaction to gluten. Some doctors are now diagnosing people based on blood tests alone, but her levels may not allow that. More information on this is in this article:

Note that she needs to keep eating around 2 slices of bread worth of gluten daily for at least two weeks before an endoscopy.

You didn't mention whether or not she has symptoms, but a second confirmation would be that her symptoms improve on a gluten-free diet.

[trents]

No, both numbers do not need to be positive to indicate celiac disease. tTG-IGA is the centerpiece of celiac antibody testing but we frequently see it negative with other parallels tests such as IGG being positive. Especially in the pediatric population. Her number isn't really super high so I would hesitate to draw a definite conclusion without further testing. The tTG-IGA can be skewed downward with the total serum IGA is low. If I were you, I would get her retested and ask for total serum IgA to be tested. There is also the option of an endoscopy with biopsy to check for damage to the small bowel lining and you may want to look into that. All testing needs to be done while she is still eating regular amounts of gluten so don't start a gluten free diet until that is complete.

https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

On the other hand, you could trial a gluten-free diet and see if her symptoms abate if you do not desire further testing.

Edited June 28, 2022 by trents

[Shan-]

26 minutes ago, Scott Adams said:

Welcome to the forum!

I agree with her doctor, and it only takes one positive test to indicate celiac disease, and her doctor may want to do a follow up endoscopy to confirm this. You should discuss this with her doctor, of course, but no matter the outcome of the endoscopy it would likely be wise for your daughter to go gluten-free, as her positive tTG, IgG test result is very specific to celiac disease, and indicates that she is having an autoimmune reaction to gluten. Some doctors are now diagnosing people based on blood tests alone, but her levels may not allow that. More information on this is in this article:

Note that she needs to keep eating around 2 slices of bread worth of gluten daily for at least two weeks before an endoscopy.

You didn't mention whether or not she has symptoms, but a second confirmation would be that her symptoms improve on a gluten-free diet.

Thank you for your response and the article, that is super helpful! She does get stomach aches often and she just let me know she often has diarrhea. I don’t think her symptoms are extreme but they are definitely there. I will definitely talk to her doctor more. Thanks again!

[Shan-]

29 minutes ago, trents said:

No, both numbers do not need to be positive to indicate celiac disease. tTG-IGA is the centerpiece of celiac antibody testing but we frequently see it negative with other parallels tests such as IGG being positive. Especially in the pediatric population. Her number isn't really super high so I would hesitate to draw a definite conclusion without further testing. The tTG-IGA can be skewed downward with the total serum IGA is low. If I were you, I would get her retested and ask for total serum IgA to be tested. There is also the option of an endoscopy with biopsy to check for damage to the small bowel lining and you may want to look into that. All testing needs to be done while she is still eating regular amounts of gluten so don't start a gluten free diet until that is complete.

https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

On the other hand, you could trial a gluten-free diet and see if her symptoms abate if you do not desire further testing.

Thank you! That makes sense she would need to continue eating gluten until she has a definite answer. I’ll definitely get more testing done and ask for the total serum IgA. Thanks for your help!

[Russ H]

1 hour ago, Shan_ said:

Thank you! That makes sense she would need to continue eating gluten until she has a definite answer. I’ll definitely get more testing done and ask for the total serum IgA. Thanks for your help!

As it is a low positive, certainly worth getting total IgA tested. They should also be able to test for deamidated gliadin peptide antibodies, which has various acronyms including DAGL, DMG and DGP.

[Wheatwacked]

The good news is that on gluten free diet she might not need those allergy shots and medications for the rest of her life.

[Shan-]

27 minutes ago, Wheatwacked said:

The good news is that on gluten free diet she might not need those allergy shots and medications for the rest of her life.

That would be incredible! She is on dupixent for really bad eczema. That’s why she couldn’t do the skin test. She has also always had anxiety.  I would love if we could find a core issue and treating that could help all these other issues she has! 

[Scott Adams]

3 hours ago, Russ314 said:

As it is a low positive, certainly worth getting total IgA tested. They should also be able to test for deamidated gliadin peptide antibodies, which has various acronyms including DAGL, DMG and DGP.

I would not refer to results that are 33% higher than the baseline as "low positive," but will admit that we often see much higher numbers here on a regular basis. She may get relief from her eczema after going gluten-free, and I hope this will be the case.

[knitty kitty]

My lifelong eczema cleared up after I went gluten free and dairy free.  Some Celiacs react to the protein casein in dairy products as they would to gluten.  

[Shan-]

14 minutes ago, knitty kitty said:

My lifelong eczema cleared up after I went gluten free and dairy free.  Some Celiacs react to the protein casein in dairy products as they would to gluten.  

Good to know, thanks for the info!

[Wheatwacked]

On 6/28/2022 at 6:54 PM, Shan_ said:

She has also always had anxiety.

Low vitamin D is common in autoimmune and mood/anxiety. I also found 5 mg of Lithium Orotate a day helped to dampen urges for immediate action

Vitamin D and Depression: Where is all the Sunshine? "Most individuals in this country have insufficient levels of vitamin D. This is also true for persons with depression as well as other mental disorders."

We mostly get the small amount of Lithium we need from drinking water. Unfortunately in the quest for health we all drink bottled water which has everything filtered out or the municipal water system has filtered it.

"The results indicate that there is a tendency for lower suicide rates in the prefectures with high levels of lithium in drinking water. Lithium in the public water supply and suicide mortality in Greece

"some authors have suggested provisional recommended intakes set at 1000 μg/day for a 70-kg adult (14.3 μg/kg body weight)." Is Lithium a Micronutrient? From Biological Activity and Epidemiological Observation to Food Fortification

"Let me ask you … if you were a large pharmaceutical company that made a lot of money selling drugs for depression and other mental health issues, and you had a lot of influence in the research that universities and government conducted, would you steer them away from investigating the effects of a simple, cheap, naturally-occurring salt that had the potential of undercutting your profits?"  An RDA For Lithium? On The Order Of 1 mg/day?

[Ginger38]

On 6/28/2022 at 3:12 PM, Scott Adams said:

Welcome to the forum!

I agree with her doctor, and it only takes one positive test to indicate celiac disease, and her doctor may want to do a follow up endoscopy to confirm this. You should discuss this with her doctor, of course, but no matter the outcome of the endoscopy it would likely be wise for your daughter to go gluten-free, as her positive tTG, IgG test result is very specific to celiac disease, and indicates that she is having an autoimmune reaction to gluten. Some doctors are now diagnosing people based on blood tests alone, but her levels may not allow that. More information on this is in this article:

Note that she needs to keep eating around 2 slices of bread worth of gluten daily for at least two weeks before an endoscopy.

You didn't mention whether or not she has symptoms, but a second confirmation would be that her symptoms improve on a gluten-free diet.

Scott- I read this article and inserted the part that confused me... so it says if it’s a weak positive TTG-IGA they recommend 2 more tests.. so if those tests are then done and results are negative does that mean the person is NOT celiac even with a positive weak Ttg-IgA? 

[Shan-]

3 minutes ago, Ginger38 said:

Scott- I read this article and inserted the part that confused me... so it says if it’s a weak positive TTG-IGA they recommend 2 more tests.. so if those tests are then done and results are negative does that mean the person is NOT celiac even with a positive weak Ttg-IgA? 

I received a call yesterday from the Pediatric GI and they asked me to take her in for more blood tests before they do a biopsy. We are heading to the lab today. More testing would make sense going by this article. 

[trents]

Ginger38,

The tTG-IGA is considered to be the best single antibody test available for diagnosing celiac disease. It combines good sensitivity with good specificity. The other tests are more specific for celiac disease but less sensitive. This means if they are positive, it more strongly points to celiac disease as the cause of symptoms. It also means, however, that they are more likely to miss a true case of celiac disease. The endomysial antibody test is also an expensive one and so physicians are less likely to order this one.

Mildly elevated tTG-IGA can also be caused by other diseases with an inflammatory component such as Crohn's and diabetes and also by some medications and even (I believe) by the dairy protein casein. 

[Scott Adams]

2 hours ago, Ginger38 said:

Scott- I read this article and inserted the part that confused me... so it says if it’s a weak positive TTG-IGA they recommend 2 more tests.. so if those tests are then done and results are negative does that mean the person is NOT celiac even with a positive weak Ttg-IgA? 

I made a small correct to that article to be more clear. The last step in the protocol should have said that if no IGA is detected, not that low IGA. I also added a reference:

https://www.mayocliniclabs.com/test-catalog/Overview/89201 

[Wheatwacked]

Having a weak positive tTG-IGA is like being slightly pregnant. Only doctors who are not Celiac would delay. They still believe it is mostly in our heads.

[Shan-]

Update- Just got a test result but I’m not sure what it means. Doctors probably won’t call me until Tuesday. Anyone have any insight to this additional test result?

 

[trents]

33 minutes ago, Shan_ said:

Update- Just got a test result but I’m not sure what it means. Doctors probably won’t call me until Tuesday. Anyone have any insight to this additional test result?

 

It means your total serum IGA is about in the middle of the normal range which, in turn, rules out the issue of your tTG-IGA score being suppressed because of low total serum IGA.

[Shan-]

3 minutes ago, trents said:

It means your total serum IGA is about in the middle of the normal range which, in turn, rules out the issue of your tTG-IGA score being suppressed because of low total serum IGA.

So with it being in the normal range, does her chances of having Celiac go down? Her tTG, IgG was elevated with the first round if testing, is this new test the same or different than her first elevated test? Sorry, I’m so new to this and really confused. 

[trents]

9 minutes ago, Shan_ said:

So with it being in the normal range, does her chances of having Celiac go down? Her tTG, IgG was elevated with the first round if testing, is this new test the same or different than her first elevated test? Sorry, I’m so new to this and really confused. 

The new test result is total serum IGA. That would be all the various IGA components added together. It would be like your total household income. You add together your income from your job, your wife's job, your investments and the room and board your elderly parent pays you who lives in your home. The tTG-IGA would be like looking at the income from your job, just one of the components of your total income. Total serum IGA is not a test for celiac disease per se. However, if it is low it can have a suppressing effect on the tTG-IGA. That it is in the normal range means that was not the case and so would not increase the likelihood that her tTG-IGA score should be higher than it is and so would not suggest any greater likelihood that she has celiac disease.

[Shan-]

6 hours ago, trents said:

The new test result is total serum IGA. That would be all the various IGA components added together. It would be like your total household income. You add together your income from your job, your wife's job, your investments and the room and board your elderly parent pays you who lives in your home. The tTG-IGA would be like looking at the income from your job, just one of the components of your total income. Total serum IGA is not a test for celiac disease per se. However, if it is low it can have a suppressing effect on the tTG-IGA. That it is in the normal range means that was not the case and so would not increase the likelihood that her tTG-IGA score should be higher than it is and so would not suggest any greater likelihood that she has celiac disease.

Thank you for taking the time to help me understand. That helps a lot!