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Testing Children


MistyRG

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MistyRG Apprentice

Now that I possibly have celiac, I am watching my kids like a hawk!!!

My daughter (age 5) had stomach issues a few months back. We couldn't pinpoint a specific time it would bother her (after meals, before meals, when she didn't want to do something . . . :rolleyes: ). Doc ordered ultrasound and blood work (not celiac related), and everything was normal. They put her back on Zantac (she had been on it as a baby for reflux). It didn't really help, and her stomach still bothers her on occasion. She also gets ulcers in her mouth all the time . . . like 4-5 every month (I have read that this could be a symptom).

My oldest son (age 9) is showing some signs, as well. My other 3 sons are under age 2. So I don't know about them yet.

All that to ask what kind of testing should I request from their pedi? Do they do the celiac panel or genetic testing on little ones? At this point, because I am waiting for a biopsy, we are all still full gluten eaters.

Thanks . . . :)


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SPJandE Newbie

I can't be of too much help, but I will tell you my experience (the little bit of it anyway). My 7 year old son's doctor wanted to do the full testing, including the genetic part. They put in for the pre-approval, but insurance refused to pay for that part. So we are only able to get the regular testing done, which we are hoping is enough. He is going this Friday for that.

If his testing is positive (I'll be shocked if it isn't), we'll then test his 6 year old brother. We opted to go that route because he is...well, let's just say it'll take an army to get blood from that child. We're trying to avoid that if at all possible, lol. We already know the baby has Celiac because he has DH (dermatitis herpetiformis) that cleared up once he was gluten free (he had had the rash his entire life before that). Testing is really unreliable under the age of 2 (or is it 3?) so we're not bothering with it for him at this point. We haven't decided if we will test him eventually, but at this point, we are not.

I would just talk to your kiddo's doctor about it and see what testing your insurance will cover, depending on your diagnosis. My son's doctor does the bloodwork first and then if it's positive, they see a GI to do the biopsy. I don't know yet if we're going to do the biopsy, but that's what they like to do. Each doctor and insurance is going to be different though. Come up with a list of questions maybe and give them a call or go in for a visit. Sorry I can't be more help, but good luck to you!

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    • trents
      Of course, I thought about the OP not being consistent with the gluten-free diet and about cross reactivity. But you would think those things would show some damage in the biopsy, especially as severe as the symptoms seem to be. SIBO? Perhaps. But then we are probably leaving a celiac diagnosis and that is the question.
    • knitty kitty
      Processed meats and formed meats, like sausage, sandwich meats, chicken nuggets, contain "meat glue" to hold their shape.   This "meat glue" is produced by bacteria and called microbial transglutaminase.  It's the same structually as tissue transglutaminase that our bodies produce in response to gluten.  Microbial transglutaminase provokes the same autoimmune reaction in our bodies as if we had eaten gluten.   Microbial transglutaminase is also used in dairy products like yogurt.   Bacon is high in histamine.  Eating high histamine foods can cause continuing gastrointestinal symptoms.  A low histamine diet helps. Processed gluten free processed foods are not enriched with vitamins and minerals like gluten containing products are.   Deficiencies in Thiamine B1, Niacin B3, and  Vitamin C can also result in gastrointestinal symptoms.   Blood tests for B vitamins are not accurate because they don't measure the amount of a vitamin stored inside cells.  The blood is a transportation system delivering vitamins from the digestive tract around the body.  What's on a truck doesn't tell you that the warehouse is almost empty.   Supplementing with B vitamins is important! Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/
    • knitty kitty
      How clean is her gluten free diet?  Is dairy included? Does she eat out?  SIBO?  Thiamine deficiency presenting as Gastrointestinal Beriberi?
    • knitty kitty
      There's more essential vitamins than B12 and Vitamin D!   Thiamine is B1.  Thiamine deficiency causes insomnia. Thiamine deficiency causes changes in brain function resulting in anxiety, insomnia, depression and dementia.  The brain uses more thiamine when stressed emotionally or physically.   Interesting Reading: Subclinical Thiamine deficiency causes anxiety, insomnia and depression... https://www.psychiatryredefined.org/running-on-empty-subclinical-thiamine-deficiency-is-common-and-causes-depression/#:~:text=Early signs of low thiamine,low appetite%2C and sleep disruption. Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Sleep and indolamine alterations induced by thiamine deficiency https://pubmed.ncbi.nlm.nih.gov/6182942/ Thiamine deficiency-induced disruptions in the diurnal rhythm and regulation of body temperature in the rat https://pubmed.ncbi.nlm.nih.gov/9804367/
    • trents
      But knitty kitty, if OP does have celiac disease, why aren't her symptoms in abatement after practicing the gluten free diet for four years? If the OP was a refractory celiac, you would think the biopsy wouldn't be clean. 
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