Celiac's Disease In 3 Year Old

[reneelt]

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?

[JennyC]

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]

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]

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]

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]

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

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

[NewGFMom]

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.

[Tallforagirl]

...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]

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.