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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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    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
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    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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