Symptoms of celiac?

Meagan - posted on 05/13/2011 ( 4 moms have responded )

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My daughter has been a skinny child. She was normal weight at birth and on time, but at around a month old she lost a ton of weight and was skeletal. Because she hard hard poop, she was put on soy formula and diluted white grape juice. That pedi told me "she's just skinny" and ignored my questions. After she misdiagnosed my daughter as having a cold (she had bronchialitus), I switched to a new pedi. Hated that one! lol

Anyway, this ones awesome. She diagnosed my daughter as failure to thrive and tested my daughter for celiac disease when she was a year old, and the blood test was inconclusive one way or the other, so she stuck her on pediasure, and checked her weight every month, to ensure she's gaining.

At her 2 year blood work (they do it yearly), she did a celiac test because they were already getting the blood. This time the test came out positive, but not strong positive.

My daughter is 2, weights 23 lbs 9 ozs fully clothed. She has either really hard or really loose poop. Never normal. She is a really picky eater and doesnt like bread, pasta, or any of the staple kid faves, but loves fruits and veggies, but I don't notice a difference in her when she eats breads. She is a very very active child, but she constantly has dark circles under her eyes. She's very smart. My mother was told she has a mild case of celiac recently, but, to the best of my knowledge, I am gluten friendly! lol

My daughter is seeing a GI next month (earliest appointment), so what should I expect them to do? What are the symptoms of celiac? What should I expect? I know absolutely nothing about this, so I am still at a loss.

Thank you for reading this! It was a bit longer than I planned. =P

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Jenna - posted on 06/08/2011

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Sounds like your daughter has most of the symptoms! Even if her bloods aren't a strong positive, a positive is still a positive! They should then perform a biopsy of her intestine so they can 100% confirm.

Heather - posted on 05/15/2011

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Well im no expert but my inlaws have it and so does my husband. The typical symptoms that they will prob. ask you about is loose stools, but in kids from what I have read symptoms can be constipation to adhd symptoms. I have found that most doctors wont diagnose celiac with constipation becuase it is not the most common symptom. I am having that problem w my daughter, but her blood tests came back negative. But she too have dark circles under her eyes, constipation or hard poops. Hope your dr appointment will go well! And I too would suggest not putting her on a gluten free diet but add gluten if anything so the test can be accurate.

Nicole - posted on 05/13/2011

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Hi there! I'm not a doctor but I am a mom of two kids with celiac. If your daughter has a positive (even if it is just slight), assuming they ran the full panel and read the results accurately (based on my experience), then she most likely has celiac. From what I've read you're more likely to have a false negative than a false positive.

I'm sure they told you, but don't change her diet until you meet with the GI doctor. When we first went, we had a basic check-up, went over symptoms and my son's blood work. Then we scheduled him for an endoscopy to get a biospy. Which actually wasn't as bad as we feared. He was put under for it but it took less than 10 minutes and the doctor came out right away to tell us that it looked like celiac to him, which was confirmed in about a week when the biopsy results came in. So from there we talked with a nutritionist and started eating gluten-free. Had a follow-up at 3 months and now we go every 6 months for blood work - to check that gluten isn't sneaking into his diet and to check vitamin levels (like vitamin d, iron, etc.).

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Jenna - posted on 06/10/2011

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I no it's not nice! I also had one under sedation but my daughter was put to sleep to have hers. She was only 12 months. I think it put a grove in the floor at the hospital I was that nervous! Xx

Meagan - posted on 06/09/2011

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Nicole - Actually she suggested I put her gluten free, so I posted this, and ended up not doing it! lol As awesome as my daughters Pedi is, I dont think she is too familiar with celiac, but I cant complain because she tested for it! lol ANd she's generally awesome! Thank you for your answer!!!

Heather - They did some funky blood work about a year ago to test for it, and she explained the test to me as being inconclusive. She didn't test negative, she didnt test positive, it was somewhere in the gray area of "maybe", and said not to worry about it, but she retested her at 2 years (they do blood tests yearly, and she figured since they were all ready drawing blood, why not draw a little more! lol), and it came back positive. Not enough for her to say yes for sure, but enough that she wanted me to bring my daughter to a GI. I googled symptoms and some of them sound like hers, but she doesnt have a ton of the symtpoms. Thank you for your reply!

Jenna - Oh dear God that sounds horrifying! lol For once in my life, I do not envy my daughter anymore.... XP lol Thank you for your reply!!! =]

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