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Gluten Ataxia/tremors
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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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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. 

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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: http://www.nasscd.org/trace-gluten-contamination-in-non-responsive-celiac-patients/

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.  

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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.

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

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    • Mnoosh,    Can you give us a link to the article you read about the increased risk after being diagnosed and maintaining a strict gluten-free diet??       IMO,   You are over reacting to a misprint or most likely a misread article.
    • Yes!  With dairy, celiacs can often have a temorary lactose intolerance due to damaged intestinal villi (where the enzymes normally are released to digest lactose).  Of course you could be naturally lactose intolerant based on race or age.  It is best to stick to a whole foods diet while you are healing.  Really, is ice cream or potato chips going to provide you with nutritional value?  Stick with naturally gluten free foods like meat, fish, fats,  veggies (even those with carbs like sweet potatoes or winter squash) and fruit.  Avoid that processed junk as you may react to the additives right now.  Later, you can add back in dairy (test) and other foods you miss and crave.   Good luck!  
    • Take a deep breath and calm down!    The incidence of cancer with Celiac Disease is rare.......it can happen but the vast majority of people never have that experience.  You may have somewhat enlarged lymph nodes due to inflammation from undiagnosed Celiac but that will all calm down and go away once you get going on the diet.  Believe me, there are many of us that have things happen during the diagnosis and early recovery period and everything turned out just fine.  There is an elevated risk for some cancers with Celiac but that risk goes back to that of the general population after a couple of years on the gluten-free diet. I cannot remember the exact time frame but it is somewhere between 2-4 years, I think.  So many of us went years without a diagnosis and when it was all figured out, we have gone on to be healthy with little complications.  Really...do  not worry about this.  Concentrate on learning all the ins and outs of this disease and how to live gluten free happily.  We are here to help you and guess what? The diet is not as bad as some make it out to be. Many things can be made gluten free and are every bit as good as their gluten counterparts. The diet may not be convenient but it is not hard. I would not lie to you!   
    • Well....one common symptom that most celiacs have when they are diagnosed (or undiagnosed) is anxiety.  So, there is a risk of cancers, but science has demonstrated that that risk goes down on a gluten free diet (if you have celiac disease).  In goes down to the same risk as those without celiac disease.   I kind of was a basket case.  I drive my family a bit crazy because I was anxious.  I felt a bit stupid too.  I guess I had a little brain fog going on too.  All that resolved after I healed. Welcome to the fourum.  Read our Newbie 101 thread under "Coping" (pinned at the top of the page) and learn about hidden sources of gluten and cross contamination.  I think most of us do not worry about cancer. We mourn the freedom to eat anything anywhere!   I did not have swollen lymph nodes, but I am sure others have and they did not have cancer.  Hopefully, they will chime in and set your mind at ease.  If not, you can search for "lymph nodes" at the top of the page (little magnifying glass).  There are lots of members with the same issue!  
    • I was recently diagnosed as having celiac and to be honest the part I'm having the most trouble with isn't the change in food or lifestyle. I'm really upset about what I've read about the risk of cancer increasing with celiac disease. I think this is playing into my fears because I currently have lymph nodes all over my body-my Doctor says they are not considered swollen or concerning, but I don't usually feel nodes. The lymph nodes and horrible diarrhea for the last 3 weeks were what got me into the the doctor for lab work. My blood work came great so I'm wondering if anyone else experienced lymph nodes reacting when they found out they were celiac? Also how do you deal with anxiety surrounding the increased risk of cancer? Thanks!
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