5 Yr Old Was Positive For Celiac Now Negative, Is It Possible. Help

[Sandysan2006]

I have a 5 yr old girl who was sick in 2011, hospitalized 2012 she had severe muscle weekness extremely high white blood cell. Her stomach funtion test was only at 50%.cpk,ldh, were dangerously high which is damage to her muscles. She was hospitalized for 3 months. Can celac cause this? They could not figure out what was wrong did a muscle biopsy and said that patholigy thought it was juvinile drematomyositis, but since she dd not have all the symptoms, they were unsure. So my 4 yr old at the time slowly stopped eating gluten whie in the hospital and got better. So I asked for a celiac test it came back positive and her genetic testing showed DQ2 and DQ8.

Test. Value. Range

IgG (dgp igg) 25.0.EU/ml. <4.9eu/ml

Iga. ( dgp iga). 8.3eu/ml. <6.1eu/ml

Iga Elsa( ttg iga). 22.0 u/ml. <10.3 u/ml

Iga ifa (ema iga). Positive

Total serum iga by nephelometry (toal iga). 81. 3-13 yrs 41-395 mg/ dl

They did do a endoscopy negative. The hospital said they believed all her problems cam from celiac, she got of gluten and got better and is normal now.

But, we moved to another state had a follow up with new gi, put her back on gluten because new doc said the endoscopy had to be positive. Now 5 yr old ran a low grade fever, stomach ache, and cough the whole 9 weeks on gluten gave her only one slice of bread a day. We get results back endoscopy is back. Negative. All blood work negative! Is this possible. I truly belive my daughter has celiac and will not give her gluten. How can a child be hospitalized, diagnosed and then some one else say no she's fine when I know she's not. Every time she has gluten she starts coughing and then the lw grade fever if on it a few days. I have given her gluten and she always gets sick. New doc says put her back on gluten, you should be happy. I asked how can her blood tests now be negative she said she did not know. I just want an answer. I want one advise. What do you think, does it take longer or more gluten for some people to test positive.

Thank you so much.

Sandra

[stanleymonkey]

If she was off gluten for a while 1 slice of bread for 9 weeks may not be enough.

I don't understand why they won't accept the diagnosis of the er. Perhaps you could get the, to get in touch with your new doctor. It's like being diagnosed with cancer, having chemo, then the new doc saying I see no tumor after your 6 months of chemo so you never really had cancer to begin with.

Get all the medical records letters etc for your new doc and if he won't accept the diagnosis get a new GI. Some docs can't think out of the text book.

[frieze]

if I used the adjective I wanted to, I probably would get a reprimand.....your new doc is the hind most part of a mule.  get a new one, asap.

[Celiac Mindwarp]

Positive blood tests, celiac genes, those symptoms and a diagnosis - looks like celiac. The biopsy is losing currency as the main diagnosis, and there is every chance that there was not enough gluten to get the antibodies high enough for the blood tests (there is a lot of debate about how much and how long is enough for testing).

The positive in your story is that if the second round of blood tests were negative then you have been doing well with the gluten-free diet.

You will need to educate your doctor or get a new one by the looks of it.

It sounds like your Mommy instincts that something was wrong are spot on.

[Ollie's Mom]

I'm with all the PPs.

Get your daughter back on the gluten-free diet that you know she needs, and find a new doc ASAP. Just because this one says she doesn't have celiac doesn't mean it's true, and it doesn't negate her previous diagnosis.

What brought you to see this new doc? New /different symptoms? Or you just wanted your celiac child to be in the care of a GI?

[Sandysan2006]

I'm with all the PPs.

Get your daughter back on the gluten-free diet that you know she needs, and find a new doc ASAP. Just because this one says she doesn't have celiac doesn't mean it's true, and it doesn't negate her previous diagnosis.

What brought you to see this new doc? New /different symptoms? Or you just wanted your celiac child to be in the care of a GI?

We moved from California to Vermont, her old G.I. just wanted me to make a appointment with one in vermont incase something were to happen we would have one. we are keeping her off gluten. It's just so frustrating how the doc said " she's fine don't worry , put her back completely on gluten and just keep your eye on her." Ugh, upsetting but we are going to get a second opinion, no matter what the outcome, I know her first diagnoses from childrens hospital in Los Angeles is correct. The doc made me feel like I am the doc, I am right, that's it. No matter how I asked she was right i was wrong.

Thanks everyone.