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The Doctor Just Called This Moring. Lots Of ?s
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I'm new here and confused! My just turned 7 year old son tested positve on his first blood test two weeks ago. The results from the second test when they tested for more antibodies came back today negative. I'm not real clear on what this all means!

Here's some background info. When Luke was 1 he was on antibiotics for a year. Even in utero I knew he was a very, very active child! We refuse to have him tested for ADD because we don't want that on his record. And we homeschool anyway so we won't give him the drugs. For the past 6 months or so he has been complaining of a tummy ache. And it keeps getting worse. And that his bones hurt. I started journaling things and it always happens after meals. We already know he is sensitive to dairy, red dye #40 and white refined sugar. He is tall for his age and very, very, very skinny! The doctor did not want to test him because he is 50% for weight and she insisted that Celiacs are always below the charts and not even on them. And he's too old to be tested! I insisted and she finally gave in. I could hear the shock in her voice when she called me with the positive results!

Anyway, now we have the first test as positive and then he tested negative for the next 2 antibodies. This doctor is not our regular doctor and she didn't explain things well at all. I KNOW there is something not right with my son. She suggested doing a gluten elimination test with him and see if he improves. Can he be gluten or wheat sensitive and not Celiac? If I make him gluten free should we see results relatively soon? I welcome any advice you have!!!

Anne

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Hey Anne,

It would be helpful to know which antibody tests came back positive and which did not and exaclty what the numbers were to better answer your question.

It is possible to have a gluten sensitivity with out having Celiac disease.

Isn't it a pain how the doctors are unwilling to test for this unless they see those 'classic' symptoms?

My little two year old is finally going in for an endoscopy next week, he has been having trouble since last June.. when I took him to the GI he was totaly dismissive until we reintroduced gluten and he had a reaction.. so we have had to have him on gluten for the last 2 months..

My oldest sounds just like yours! He is 8, skinny as can be and ADD.. I also homeschool. I am waiting till this test on the 2 year old and then we will get the other ones tested..

A great book for you to get is

Kids with Celiac Disease by Danna Korn. It explains alot and has been helpful to me.

Again knowing what tests came back as what wil help us answer those other questions.

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Thanks for the reply! I called the office to ask what was positive and what was negative. The nurse said the anti-gludin antibodies were postive and the anti-endomezial antibodies were negative. They couldn't remember the other negative and the tests weren't at that office. Sorry about butchering the spelling!!!!

Annie

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Annie, my new little grandson was diagnosed at about 2 months with gluten sensitivity and allergies to milk and dairy, through Enterolab. It was so painful to see him suffering each time he drank his formula. By 6 months (and off all gluten, milk and dairy) he was at the 90th %ile for height and the 75th%ile for weight. He thrives, as long as no one accidentally gives him forbidden foods. I'll be hoping that your little ones thrive too. Welda

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    • First, do you have celiac disease?  Have you recently had a celiac antibodies follow-up blood test panel to see if gluten has been actually getting into your diet by accident or through cross contamination?  If you haven't had the test, you should ask your doctor for one.  You could also also ask for a follow-up endoscopy to see if you intestines have truly healed.  This will rule out if gluten is really the problem.    If you don't have celiac, I assume you have Non-celiac gluten Intolerance because no one would stick to the gluten-free diet for six years unless you have had reductions in symptoms.  There is no test for NCGI unfortunately.  So, it is hard to say if gluten has been sneaking into your diet.  You really are going to have to try to figure out if you are getting gluten into your diet.  If gluten is not the problem, then your doctor needs to check you for other issues, like SIBO. There is a test to check for SIBO.  Has this been done?   Once a celiac, always a celiac.  There is no cure for celiac disease except to remain on a gluten free diet for life.  I am not sure about NCGI.  Not much research has been done.  Maybe others can chime in?    
    • I am so confused right now.... 6 years ago I went on gluten free diet... after being on it for the first yr I was 100%better up until 5 months ago in got the "flu" the doctors told me to cut out dairy sonic did and my diarrhea  became better but not completely gone would not have it every day tho. I went to the gi doctor and they said to cut out fructose and dairy and keep gluten out... yesterday I went to the dietitian to see what I can eat and she gave me the list for fructose... she said it should have been on a antibiotic for sibo.... eventually I will be able to add dairy back and maybe gluten.... I said how can I add gluten back when this was my first problem... she goes well through fructose goes hand in hand with it... I said with gluten I vomit and am sick for weeks.... fructose isn't that bad I vomit sometimes but I'm not sick for weeks.... I'm just confused on really what is going on and was wondering if you or someone you know had sibo from gluten and or fructose and how Is this all related?
    • I see no one has responded to your query.  Unfortunately I have yet to try making a pie crust.  It was something I never mastered before going gluten free.  Have you looked on Pinterest?  You might find something there.
    • I honestly feel like both doctors think it's all in my head even though there is proof.  Yeah there was a point when I felt crazy.  That was when I was being shuffled from dr to dr being given individual diagnoses of my problems.  None of those diagnoses ever made me get better.  Seriously I was diagnosed with heart palpitations, neurocardiogenic syncope, I was given a butt load of steroids because a dr felt like I was producing too much adrenaline, freaking had a few tell me I was depressed, and the good ol IBS.  It seemed most wanted to push pills.  It's all just ridiculous!
    • I can't believe your doctors!!! You have a daughter who is dx'd already! Yet the ped doesn't want to test your other kids unless you have a dx????!!! Are you kidding me???!!! That's absurd!!! They have a first degree relative who has been dx'd with celiac already. There is no need to wait to see what you turn out to be!! And then, and then, and then....don't even get me started on your doctor!!! Does he have brain damage? Oh this is insane & ridiculous!  I have never heard of a disease that doctors are so unwilling to consider or test for OR to diagnose as this one! Usually they are hot to trot to make a dx but say the word celiac & they shake in their boots. Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr!!!!!!!!!!!!!!!!!!
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