Opinion on Son's Test Results

[BlueLobster15]

Hello, 

My 4 year old son was recently tested as part of a blood workup to check his vitamin levels, blood counts and they threw in the celiac tests. He doesn't have a lot of symptoms, but our primary reason for allergy and blood tests were due to behavioral issues, frequent loose stools (since infancy), then some boughts of constipation, dark under eye circles, persistent congestion, and frequent complaints of an upset stomach and headaches. His allergy skin test came back negative for everything they tested. Labs showed good numbers for blood counts and Vitamin D. However, the celiac panel came back with a flag and then subsequent EMA test. Here's the tests:

Total IGA: 81 (26-232)

TTG IGA: 9.1 (neg: <6.9; equv: 7-10; pos: 10<)

Gliadin IGA: 1.9 (neg: 0-6.9)

EMA IGA: negative

They said the TTG was a false-positive since everything else was negative. He doesn't have any autoimmune issues that I'm aware of, so it bothers me that a slightly elevated number is there. I plan to follow up with our primary at my son's annual checkup in a couple months if symptoms persist. Should I be concerned? If it is really early celiac, would this number increase in 3 months? Can other minor things or other food intolerances cause a slightly elevated TTG?

Thanks for any advice you can give. 

[cyclinglady]

13 hours ago, BlueLobster15 said:

Hello, 

My 4 year old son was recently tested as part of a blood workup to check his vitamin levels, blood counts and they threw in the celiac tests. He doesn't have a lot of symptoms, but our primary reason for allergy and blood tests were due to behavioral issues, frequent loose stools (since infancy), then some boughts of constipation, dark under eye circles, persistent congestion, and frequent complaints of an upset stomach and headaches. His allergy skin test came back negative for everything they tested. Labs showed good numbers for blood counts and Vitamin D. However, the celiac panel came back with a flag and then subsequent EMA test. Here's the tests:

Total IGA: 81 (26-232)

TTG IGA: 9.1 (neg: <6.9; equv: 7-10; pos: 10<)

Gliadin IGA: 1.9 (neg: 0-6.9)

EMA IGA: negative

They said the TTG was a false-positive since everything else was negative. He doesn't have any autoimmune issues that I'm aware of, so it bothers me that a slightly elevated number is there. I plan to follow up with our primary at my son's annual checkup in a couple months if symptoms persist. Should I be concerned? If it is really early celiac, would this number increase in 3 months? Can other minor things or other food intolerances cause a slightly elevated TTG?

Thanks for any advice you can give. 

I think that three months is too soon to re-test.  There's not much information out in the web on a slightly elevated TTG.  I can sympathize as I was only positive on the Glidadin (DPG) IgA and negative on all the rest, but my biopsies revealed moderate to severe damage.  But that DPG test was definitely positive (unlike your son's results of equv.).   I was lucky (like your son) to at least get the full celiac panel.   

 Was he tested for lactose intolerance?  Perhaps, eliminating dairy for a few weeks that might solve his problems.  

[BlueLobster15]

Thank you, that's helpful. I believe his allergy skin test checked it, but his skin tests all came out negative. Do you know if there a blood test that can be done too? He's never had vomiting issues or skin rashes, so our primary doctor doesn't suspect it to be a true milk allergy. We're on week 2 of removing milk from his diet, but just the drinking milk...we haven't removed all dairy (i.e. Yogurt, milk in cooked/baked food). My husband is skeptical, so only agreed to remove what he was drinking. His behavior has improved slightly, but still dealing with the other issues. My MIL and SIL have IBS issues and SIL also was diagnosed with Herbert's syndrome (gluten sensitivity?) Maybe I'm just being a neurotic mom, but I know something's amiss, but can't quite but our finger on it. Thanks again! 

[cyclinglady]

There is a lactose intolerance test, but avoiding all sources of lactose (milk sugar) and milk proteins (casein) might be worth it if your husband agrees.  Research more about this.  Not everyone has rashes and vomiting.  You can have mild allergies that worsen seasonally.  Geez, I don't vomit or rash up when I ride horses or breath in mold or ragweed (but I do and have gone anaphlatic with medications).    Allergy testing is spotty at best.  Try keeping  a food, symptom diary.  It might help.  Avoid processed foods.  He could be reacting to the colorings, preservatives, etc.  This wouldn't hurt anyone in your family! 

In any case, trust your gut!  Something is wrong.  Keep advocating for him.  As a mom I worry about some weird symptoms my kid experiences.  She tests negative so far to celiac disease, but autoimmune issues run like crazy in our family.  i just  keep a watchful eye, along with her doctor.   No need for her to suffer for years like so many do with AI issues.  That is one positive thing about my celiac disease diagnosis.  My 19 year old niece had vomiting issues and abdominal pain.  celiac disease was ruled out, but we persisted.  She was just diagnosed wiith Crohn's and the damage found on the pill cam was severe (in a spot not reached with an endoscopy or colonoscopy yet her symptoms did not match the standard Crohn's symptoms.  She now knows to watch out for celiac disease for the rest of her life.  

IBS issues?  Your other family members should be tested for celiac disease.  I would not accept an "I be stumped" diagnosis.  

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[BlueLobster15]

Again, thank you for your helpfulness. Interesting article and good things to consider. Hopefully, I can talk the hubby in trying a gluten-free diet test period. Since he's skeptical (and stubborn) I'm kind of taking things one step at a time. I feel like we're on the right track to getting to the bottom of it all, but it when it comes to food sensitivities, intolerances and allergies it's a bit overwhelming. I did try a food diary for a couple of weeks, but never could quite pinpoint a trigger, so my assumption is that whatever it is was something he's getting everyday. I'll try that again and maybe I'll have better luck.

If his symptoms continue, maybe I'll have him tested again in the summer? It still bothers me that a 'grey area' TTG level was there with no explanation of why.  He starts kindergarten next year, so hopeful we can solve this before then. 

Thanks again! Really appreciate your feedback! 

[cyclinglady]

I did not mean to imply that you should put him on a gluten free diet.    If you suspect a problem with gluten, please get an opinion from a GI who is celiac savvy.  All celiac testing requires a patient to be consuming gluten. 

The slightly equivocal TTG?  That warrants a gene test at the very least.  

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[BlueLobster15]

I thought maybe doing a trial period to see if he reacts positively to being gluten free and then adding it back to see if symptoms come back would maybe be helpful to the doctor? But I guess that's true, it might skew things regarding any future tests that might be warranted. 

[cyclinglady]

He might have celiac disease (or just the start of it).  He might have Non-celiac Gluten Intolerance, which is real, but there is not a test for it.  He might have other food intolerances (milk, dyes, etc.).  You have been to an allergist and he did not positive for allergies (I assume wheat was included in the panel.).  Trialing a diet is fine, even a gluten free diet, when you ruled out everything.  But you have that quirky TTG result.  I gave you the link from the MayoClinic (top notch) and their algorithm recommends further evaluation.  An allergist is not a celiac expert nor is primary care doctor.  You should get a referral to a Ped GI.  If she/he suggests a gluten-free diet, then fine.  Because if he improves then, the GI will give you a diagnosis.  By the time you see the GI, he might have ordered another round of celiac blood tests, genetic tests, or he might want to order an endoscopy.  This case is not clear and that is a bummer.  

The cure is the diet.  But he will be going to school and a diagnosis will pave the way for accommodations all the way to college.  And anyone here will tell you that once you get off gluten (and that is the root cause), it is awful....horrific... to go back on it for further testing.  

This is his life and yours.  You must do what is best for your family.  I wish you well and we are here to support you.  I care.  I am mom.  

[BlueLobster15]

Thank you cyclinglady! We'll just keep pushing forward and we'll get things figured out one way or another. You have been most helpful and informative and given me some great resources and things to consider. I really appreciate it! I definitely feel better as I've felt like a crazy mom lately thinking through the test results and everything. Even if it turns out to not be celiac or gluten related, at least I can say we did our due diligence and looked under every rock to find the source of his troubles. Thanks again! 

Take care!