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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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    • trents
    • Skg414228
      Correct. I’m doing both in the same go though. Thanks for clarifying before I confused someone. I’m doing a colonoscopy for something else and then they added the endoscopy after the test. 
    • trents
      It is a biopsy but it's not a colonoscopy, it's an endoscopy.
    • Skg414228
      Well I’m going on the gluten farewell tour so they are about to find out lol. I keep saying biopsy but yeah it’s a scope and stuff. I’m a dummy but luckily my doctor is not. 
    • trents
      The biopsy for celiac disease is done of the small bowel lining and in conjunction with an "upper GI" scoping called an endoscopy. A colonoscopy scopes the lower end of the intestines and can't reach up high enough to get to the small bowel. The endoscopy goes through the mouth, through the stomach and into the duodenum, which is at the upper end of the intestinal track. So, while they are scoping the duodenum, they take biopsies of the mucosal lining of that area to send off for microscopic analysis by a lab. If the damage to the mucosa is substantial, the doc doing the scoping can often see it during the scoping.
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