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Celiac's Disease In 3 Year Old

reneelt

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reneelt Rookie
reneelt
Posted

I am new to the forum and also to Celiac's Disease. My 3 year old son was tested 1 week ago by a blood draw. His tTG IGG and IGA were negative but his Glidian IGG and IGA were postive. The IGG was greater than 100 and the IGA was at 25. For both of these normal is 11-17. We are being referred out to a Pediatric GI. I have been pretty much told that the tTG is probably a false negative. Has anybody else been told this? What should I ask the Pediatric GI? What is usually the next step? If you have a child with Celiac's Disease is the whole family on a gluten free diet? I am also hoping to get into a dietitian. What should I ask the dietitian?

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JennyC Enthusiast
JennyC
Posted

Welcome to the board! :) False negatives are common in children, and you are lucky to have knowledgeable doctors for your son. Many doctors seem to be severely uneducated when it comes to celiac disease. Most GI doctors will want to do a biopsy of the small intestine. For this procedure it is important that he continues to eat a gluten rich diet. There are different schools of thought regarding diagnosis via biopsy. It is the "official diagnosis," but it is possible to miss the damaged areas of the intestines during the biopsy, resulting in a false negative. Many believe a biopsy can only rule in celiac, not rule it out. Then there are other doctors who will not diagnose celiac without villus atrophy (flattening of the villi visible during biopsy). Just be sure to find a great GI. You might try to contact the Gluten Intolerance Group (GIG) for doctor recommendations in your area.

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reneelt Rookie
reneelt
Posted
  • Author

Thank you for the response Jenny! The information was great. I feel like I am going in blinded and don't want to be side swiped by anything. I just hope to get a good doctor. We are going to the University of Michigan so I would hope to get a great doctor but I guess only time will tell. Thanks again. Any more information is very welcome!

mommida Enthusiast
mommida
Posted

Welcome to the board!

We have a lot of Michiganders here.

Kids with Celiac Disease by Danna Korn was a very helpfull book. It has some insightful suggestions to make life easier for your little one.

Great News... Piece O' Cake is in the Ann Arbor area! I don't want to get flagged for posting a website. Kinda pricey but VERY yummy gluten free goodies.

Five years ago the dietician cancelled the appointment. She told us to buy the book I mentioned and come to this site. I'm still here because this is where I find out about new gluten free foods, recipes, and just a great support system.

reneelt Rookie
reneelt
Posted
  • Author
Welcome to the board!

We have a lot of Michiganders here.

Kids with Celiac Disease by Danna Korn was a very helpfull book. It has some insightful suggestions to make life easier for your little one.

Great News... Piece O' Cake is in the Ann Arbor area! I don't want to get flagged for posting a website. Kinda pricey but VERY yummy gluten free goodies.

Five years ago the dietician cancelled the appointment. She told us to buy the book I mentioned and come to this site. I'm still here because this is where I find out about new gluten free foods, recipes, and just a great support system.

Thank you for the book suggestion! I will look up the Piece O' Cake. I will definitely be looking for the book. I am excited to be here and have support and get answers to questions. I will be on the look out for more Michiganders too.

mommida Enthusiast
mommida
Posted

I know I shouldn't have gone looking through the site. :rolleyes:

So now I can't stop thinking about gluten free Twinkies. <_<

NewGFMom Contributor
NewGFMom
Posted

The TTG is certainly the most reliable of the blood tests for celiac. When that one is positive 99% of the time celiac is what you're looking at.

If it were my child, I would do the biopsy if the blood work was inconclusive.

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Tallforagirl Rookie
Tallforagirl
Posted
...If you have a child with Celiac's Disease is the whole family on a gluten free diet?

You and your son's father, plus any siblings, should be tested for celiac disease as well. First degree relatives of someone with celiac disease have around a ten per cent chance of also having celiac disease, as opposed to one per cent in the general population.

If no-one else in the family has celiac disease, it's up to you whether you all go gluten-free. I find it much easier in my household of two, if there are no "suspect" items I could inadvertently pick up and eat, and I don't have to worry about checking labels at home. The only gluten thing currently in our house is a loaf of bread in the freezer for my gluten-eating BF.

...I am also hoping to get into a dietitian. What should I ask the dietitian?

I found it very worthwhile getting a dietician's advice when I was first diagnosed, especially with regard to deciphering labels. Make sure you find someone who is well educated about celiac disease and the gluten-free diet, as not all dieticians are.

jmjsmomma Apprentice
jmjsmomma
Posted

My 5 yo old is the only one in our family of five that has tested positive for Celiac. Our home is gluten free except for bread. My 2&4 yos still eat regular bread which is kept separate and away from my 5 yo who is not a bread eater even pre-diagnosis. It just worked out to be a natural transition.

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    • trents
      Disaccharide deficient, confusing biopsy results, no blood test

      By trents · Posted

      So the tTG-IGA at 28 is positive for celiac disease. There are some other medical conditions that can cause elevated tTG-IGA but this is unlikely. There are some people for whom the dairy protein casein can cause this but by far the most likely cause is celiac disease. Especially when your small bowel lining is "scalloped". Your Serum IGA 01 (aka, "total IGA") at 245 mg/dl is within normal range, indicating you are not IGA deficient. But I also think it would be wise to take your doctor's advice about the sucraid diet and avoiding dairy . . . at least until you experience healing and your gut has had a chance to heal, which can take around two years. After that, you can experiment with adding dairy back in and monitor symptoms. By the way, if you want the protein afforded by dairy but need to avoid casein, you can do so with whey protein powder. Whey is the other major protein in dairy.
    • jenniber
      Disaccharide deficient, confusing biopsy results, no blood test

      By jenniber · Posted

      hi, i want to say thank you to you and @trents   . after 2 phone calls to my GI, her office called me back to tell me that a blood test was “unnecessary” and that we should “follow the gold standard” and since my biopsy did not indicate celiac, to follow the no dairy and sucraid diet. i luckily have expendable income and made an appt for the labcorp blood test that day. i just got my results back and it indicates celiac disease i think 😭   im honestly happy bc now i KNOW and i can go gluten free. and i am SO MAD at this doctor for dismissing me for a simple blood test that wouldn’t have cost her anything !!!!!!!!!!! im sorry, im so emotional right now, i have been sick my whole life and never knew why, i feel so much better already   my results from labcorp:   Celiac Ab tTG TIgA w/Rflx Test Current Result and Flag Previous Result and Date Units Reference Interval t-Transglutaminase (tTG) IgA 01 28 High U/mL 0-3 Negative 0 - 3 Weak Positive 4 - 10 Positive >10 Tissue Transglutaminase (tTG) has been identified as the endomysial antigen. Studies have demonstrated that endomysial IgA antibodies have over 99% specificity for gluten sensitive enteropathy. Immunoglobulin A, Qn, Serum 01 245 mg/dL 87-352
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      By Samanthaeileen1 · Posted

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      By GlorietaKaro · Posted

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