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False negative blood test in children

Mathew
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Go to solution Solved by ravenwoodglass,

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Mathew Contributor
Mathew
Posted

I have celiacs desease, so did my dad. I had my daughters tested in aug 2022 and my oldest was positive and my yougest negative. Now my youngest is 11 and has been suffering from vacant episodes, dizziness, dream state. She has gluten in her diet. She has been tested for epilepsy and that was negative. She has had a heart tracer (waiting results) and an MRI scan on Friday. 

 

My question is, could the test be afalse negative? And could these symptoms be Ataxia?

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ravenwoodglass Mentor
ravenwoodglass
Posted
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Just because her result was negative before does not mean it will be now. Do get her retested with a full panel.  It sounds like she may have more neuro impact than GI so her blood work may still be false negative. The antibodies can cause something called UBOs on a brain MRI which are similiear to the lesions founds with MS but in different places. Do keep her on gluten till all testing is done.  I hope things get better for all of you soon. It is so hard when your children are ill.

Mathew Contributor
Mathew
Posted
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1 hour ago, ravenwoodglass said:

Just because her result was negative before does not mean it will be now. Do get her retested with a full panel.  It sounds like she may have more neuro impact than GI so her blood work may still be false negative. The antibodies can cause something called UBOs on a brain MRI which are similiear to the lesions founds with MS but in different places. Do keep her on gluten till all testing is done.  I hope things get better for all of you soon. It is so hard when your children are ill.

She was having the episodes at the time she was tested in Aug 2022. But i hear what ya saying. Would a brain MRI show this that ya talking about?

Scott Adams Grand Master
Scott Adams
Posted

It would be best to ask your doctor about this, but @ravenwoodglass definitely knows a lot about such things, so it is likely that an MRI would reveal gluten-related brain issues, including calcifications in certain areas, which have been associated with celiac disease.

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    • cristiana
      Coeliac or not coeliac

      By cristiana · Posted

      Hi @CC90 Ah... that is very interesting.  Although it is very annoying for you to have to go through it all again, I would say that almost sounds like an admission that they didn't look far enough last time?   I could be wrong, but I would not be at all surprised if they find something on the next attempt.  Coeliac damage can be very patchy, as I understand it, so that's why my own gastroenterologist always likes to point out that he's taken lots of samples!  In the kindest possible way (you don't want to upset the person doing the procedure!) I'd be inclined to tell them what happened last time and to ask them in person to take samples lower down, as  if your health system is anything like the one in my country, communication between GPs, consultants and hospitals isn't always very good.  You don't want the same mistake to be made again. You say that your first endoscopy was traumatic?  May I ask, looking at your spelling of coeliac, was this done at an NHS hospital in England?  The reason for the question is that one of my NHS diagnosed friends was not automatically offered a sedative and managed without one.  Inspired by her, I tried to have an endoscopy one time, in a private setting, without one, so that I could recover quicker, but I had to request sedative in the end it was so uncomfortable.    I am sorry that you will have to go through a gluten challenge again but to make things easier, ensure you eat things containing gluten that you will miss should you have to go gluten free one day. 😂 I was told to eat 2 slices of normal wholemeal bread or the equivalent every day in the weeks before , but I also opted for Weetabix and dozens of Penguin chocolate biscuits.  (I had a very tight headache across my temple for days before the procedure, which I thought was interesting as I had that frequently growing up. - must have been a coeliac symptom!)  Anyway, I do hope you soon get the answers you are looking for and do keep us posted. Cristiana  
    • CC90
      Coeliac or not coeliac

      By CC90 · Posted

      Hi Cristiana   Yes I've had the biopsy results showing normal villi and intestinal mucosa.  The repeat endoscopy (requested by the gastro doc) would be to take samples from further into the intestine than the previous endoscopy reached.      
    • Wheatwacked
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      By Wheatwacked · Posted

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    • trents
      Coeliac or not coeliac

      By trents · Posted

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    • cristiana
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      By cristiana · Posted

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