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Gluten Ataxia/tremors

susan7fink

By susan7fink
in Super Sensitive People

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susan7fink Rookie
susan7fink
Posted

My son was diagnosed several months ago.. He has psoriatic arthritis, he has learning difficuties (working memory, short term memory) he has been in speech, OT, and on a complete fluke we found out he had celiacs,, not the common systems. confirmed by blood work and biopsy. Soon after.. he started having tremors.. started out where i couldnt even see them until he pointed it out (hes 9)  now they are worse. started to do PT but then he broke his elbow badly in gym.. so we have to forgo that for another 4 weeks. He doesnt complain.. but his stomach up high and middle , back mostly upper near shoulder blades and around the side.. ankles knees and fingers.. Took him to a neurologist who said bc of his celiacs .. he believes it has effected his cerebellum (ataxia) and is going to brain storm with his rheumatologist. I have read several articles on this .. but they are hard to find.. i am very curious if anyone else has delt with this.. and why its not getting better being gluten free.. but am finding out about trace gluten.. as the tremors get worse the more worried i get and the more difficult it becomes. I do NOT want to go on high dose meds that have many side effects at 9!

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1desperateladysaved Proficient
1desperateladysaved
Posted

I felt like I had the tremors my whole life.  My chiropractor found I was low in magnesium and we supplemented it.  My tremors went away and didn't return.  I would recommend checking nutrient levels before considering any drugs. 

dilettantesteph Collaborator
dilettantesteph
Posted

I am sorry that you are dealing with this.  I am someone who is very sensitive to trace gluten.  I have some neurological effects, but not tremors.  My son is also very sensitive to trace gluten and it leads to severe learning disabilities for him.  He goes from getting among the highest grades in his class when he is healthy to failing everything when he is glutened.  He was diagnosed at age 10 and is now 16.  It took us a long while to figure out how to avoid trace contamination.  There was a lot of painful trial and error.  There were a lot of trips to doctors offices and negative medical tests run looking for other sources of the problems. 

 

 I suggest that a good starting place is this study: Open Original Shared Link

This will speed up your learning process quite a bit.  When we started the was so little known about it that we met with skepticism everywhere.  Another good resource is Jane Anderson at about.com.  

 

At age 9, your son has a few years before those grades will count towards college.  Be patient with yourself as you learn.  Take care of yourself through this stressful time and you will be better able to take care of your son.  

susan7fink Rookie
susan7fink
Posted
  • Author

Thank You.. so im not going crazy lol.. i kept saying this is too many issues for a 9 year old to have,, they have to be connected .. just didnt have a clue it was going to be the gluten.. thanks for the links and websites.. I rather would go natural then drugs for sure.. he takes vit D and krill oil.. magnesium may be needed.. also more plant food less boxed "gluten Free" foods since its hard to define how much trace gluten is in it. I thought gluten-free was difficult enough.. But well .. we do what we have to do. I love all the support on here and hearing different testimonys. makes me feel not so alone.

susan7fink Rookie
susan7fink
Posted
  • Author

oh the tremors started at or around the time we went gluten-free is this odd?

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      By wellthatsfun · Posted

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      Help understand results

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    • trents
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      Welcome to the celiac.com community @pothosqueen!   Can you be more specific about which IGA test was run that resulted in 114 score and said to be "normal" and could you please include the reference range for what would be normal? By the size of that number it looks like it may have been what we call "total IGA" but that test is not usually run without also running a TTG-IGA. Total IGA tests for IGA deficiency. If someone is IGA deficient, then the celiac-specific IGA tests like the TTG-IGA will be inaccurate. Was this the only IGA test that was run? To answer, your question, yes, a positive biopsy is normally definitive for celiac disease but there are some other medical conditions, some medications and even some food proteins in rare cases that can cause positive biopsies. But it is pretty unlikely that it is due to anything other than celiac disease.
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      Positive biopsy

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      Upper endoscopy last week resulted in positive biopsy for celiac disease. The IgA they ran was normal (114). Does positive biopsy automatically mean definitive diagnosis?
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