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Help Please 3 And A Half Yr Old Negative Bloods

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We are coming up to a month of my 3 year old having chronic yellow floating mucous stool, it alternates between that and watery diarrehea and in the last week the food is undigested. I can see what he ate the day before.

He is tired all the time, pale, black bags under his eyes, pale gums, can't sleep because of restless legs (he gets up at 3am ish every morning), tells me his head spins and spins, falls over all the time, gets puffed out in a couple of minutes at the park, says he feels sick in the tummy and that his tummy hurts, losing weight, he has become very clingy, cries at the slightest thing, bad tantrums and either totally hyper or really exhausted, has no appetite.

I reckon at this stage he might be anemic, he had his bloods done for all the HLa stuff -not dna nor vitamin deficiencies but it came back negative.....

There is celiac in my family, I don't know what to do....continue giving him gluten and hope he gets a diagnosis or just say bugger it and go gluten free.

I'm beginning to realise that drs have no idea about celiac at all.

I've read that false neg blood tests are very common in kids under 5, does anyone have any idea how often this happens.

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I am so sorry. I am not a doctor and do not want to try and diagnose your child, but I feel your pain. So I just want to share my story and hopefully it can help you make the right decision or point you in the right direction. My son at the time was 2 years old (he is now 4) had very very similar symptoms. It was frustrating because his doctor couldn't figure out the problem. We eventually one day couldn't take watching him in pain anymore and we took him into the emergency room. It was a really hard decision but we knew we couldn't wait for an answer anymore. It was there they did a stomach x ray and found something wrong with his intestines, that is when they sent us to the children's hospital. Long story short, we saw a stomach specialist and a GI doctor. His intestines were stressed out and started collapsing on each other, they did tons of blood work to determine why the intestines were stressed out. The blood work, lead them to believe it was Celiac Disease, however they couldn't be sure until they did a large and small intestines biopsy. It was the biopsy that determined he had celiac. It was a long 4 days in the hospital, test after test, and lots of procedures, so I will spare you all the long details. However, as a parent that saw their child suffering I feel your pain, and the severe symptoms sound too familiar. My advice is to use your parent intuition, get him to emergency room if you think it is necessary or find out the best GI doctor in your area ASAP, and don't take "I don't know as an answer", demand answers and demand them quickly. You said there is celiac in your family, and from what I understand Celiac can be hereditary. Definitely don't take the gluten out of his diet yet, you want to make sure that he gets diagnosed correctly. If you take the gluten out before he is diagnosed, it might make it more challenging for the doctors. If you are getting a lot of mix answers in the bloodwork definitely discuss the biopsy.

My son is 4 now, and as soon as we changed his diet we saw an improvement in his health and moods right away. He is now a healthy, growing, always laughing and high energy child!!! Keep me posted and wish you and your son the best.

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