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4 Year Old With Possible Celiac - Do We Go Gluten Free Now?


ScootchsMom

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ScootchsMom Newbie

Hi. We just began our path down this road unfortunately with our 4 year old daughter. I finally convinced the pediatrician yesterday that something is really wrong with her and she had blood taken for the celiac test as well as CBC, H. Pylori (sp?) and two other things that I'm not sure of.

DD's symptoms right now are:

Stomach pain every day - almost all day complaints, including to her preschool teachers

fatigue - despite 12 hours of sleep every night

itchy skin

Dark circles under her eyes all the time

numb toes on and off

constant irritability

rages at least once a day - totally flips out over a minor thing or over nothing at all. Screaming, gets violent if you try to calm her, takes forever to calm down again.

And as of yesterday - constipation diagnosed via x-ray and a confirmed weight loss of 3 pounds since mid-January. Mind you, she is thin and tall, so the wiehgt loss really shows. I knew it before they said it.

We have to wait 2 weeks for the celiac results, all the other labs came back normal already.

I watched her food like a hawk today since she is home from school on Tuesdays.She's already dairy-free as we thought that was the original problem. I'm keeping her dairy free for now since when I tried to reintroduce it two weeks ago she ended up with massive diarrhea. She had absolutely nothing with gluten in it and I didn't have a single problem with her behavior. I asked her about an hour ago how her tummy felt and she said it felt good. I haven't heard that phrase out of her since January when the stomach aches started.

My concerns with going full on gluten free before a diagnosis is #1 getting her preschool (and family) to comply without an "official" diagnosis and #2 causing any biopsies or more blood work to be negative because she is already healing. But I can't fathom continuing to give her gluten if it is causing her this much distress. I also don't know if I would even put her through a biopsy if the blood is +. I'm looking into doing the test from Enterolab for both her and my 9 month old son.

Glad I found this board!

Liz


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jenny-ann Rookie

Liz,

I am also just beginning this journey with my youngster. I can't give you an answer though I do share ALL of your concerns. I may have said a dozen times today that having a diagnosis will make sure everyone takes it seriously. I took Claire off gluten for 11 days just to see what happened. She improved so much within 48 hours. The opposite effect was equally true when I reintroduced wheat. For us the answer is that I am just using up what we have left of gluten in the house while we wait for the test results (drawn Thursday - a week to go?). Assuming hers are positive I will have all of the rest of us tested immediately and then we will all be gluten free. If her results are negative I am going to send a sample to Enterolab.

According to what I have read, a week or so off gluten won't affect the results drastically...

Jenn

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    • Jsingh
      Hi,  My 7 year daughter has complained of this in the past, which I thought were part of her glutening symptom, but more recently I have come to figure out it's part of her histamine overload symptom. This one symptom was part of her broader profile, which included irritability, extreme hunger, confusion, post-nasal drip. You might want to look up "histamine intolerance". I wish I had known of this at the time of her diagnosis, life would have been much easier.  I hope you are able to figure out. 
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    • trents
      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
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