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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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    • marion wheaton
      Are Lindt chocolate balls gluten free?

      By marion wheaton · Posted

      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      Are Lindt chocolate balls gluten free?

      By trents · Posted

      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      Are Lindt chocolate balls gluten free?

      By BlessedinBoston · Posted

      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
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