Gluten Ataxia?

[cccbaker]

My 10 year old was diagnosed with benign tremors at 2 years old. Very uncoordinated, balance issues. Diagnosed later with hypotonia. Pretty much unable to button buttons, tie shoes, etc. He has had every neurological test done, nerve conduction, muscle tests, MRI, with no conclusion as to why. He has physical therapy and occupational therapy 2 a week, for the last 3 years. This year he showed no improvement, endurance would not increase, in fact it was worse. He also became very fatigued very quickly. After a little research, I came across gluten intolerance. While researching I found many other symptoms, including bumps on the back of arms, dry scalp, distended belly, rash, tooth enamel problems, even tics, and etc. He exhibited all of them. He is not the child that is underweight or has a lot of stomach issues. To many he looks very healthy, however when you see your child struggling you know. We went to our pediatrician and asked to be tested for Celiac disease, he assured me that he didn't have it, however it was a simple blood test, so he ordered it. It came back positive for Celiac disease. We have been waiting 2 months for a GI appt to confirm. So the mom in me has researched and researched finding that ataxia may be involved with my son. I know it is rare in children, however he exhibits many of the traits. My question is, has anyone else encountered these symptoms with their child? If so, does a gluten free diet help these symptoms? Like I said we are new to all this, just trying to get information before our GI appt. Thanks in advance!

[ravenwoodglass]

Cccbaker, welcome to the board.  I began developing ataxia at around 5 or so.  Gluten can pretty much attack anywhere and the diagnosis process can be so frustrating. There is some thinking amoung doctors that with children if the panel levels come down and the child improves on the diet that can be considered diagnostic. You may want to ask your doctor if that is a possibility. You could also consider asking to be put on a cancelation list for the endoscopy if you can get him in on short notice.  Please even if the endo is negative get him on the diet as soon as all the testing you choose to do for celiac is finished.  Make sure the doctor checks his vitamin and mineral levels especially B12. You don't have to wait for the GI appointment.  I hope he recovers quickly but do keep in mind that neuro issues can take some time to heal. Unfortunately we have to be patient, hard as that is when our child is suffering.

[Awol cast iron stomach]

3 hours ago, cccbaker said:

he assured me that he didn't have it, however it was a simple blood test, so he ordered it. It came back positive for Celiac disease

Your son is very fortunate his mother is a wise, instinct listener, advocate. Ravenswood gives excellent sage advice. Good luck with the  remainder of testing and best wishes on healing.

Welcome to the forum.

[Ennis-TX]

3 hours ago, cccbaker said:

My 10 year old was diagnosed with benign tremors at 2 years old. Very uncoordinated, balance issues. Diagnosed later with hypotonia. Pretty much unable to button buttons, tie shoes, etc. He has had every neurological test done, nerve conduction, muscle tests, MRI, with no conclusion as to why. He has physical therapy and occupational therapy 2 a week, for the last 3 years. This year he showed no improvement, endurance would not increase, in fact it was worse. He also became very fatigued very quickly. After a little research, I came across gluten intolerance. While researching I found many other symptoms, including bumps on the back of arms, dry scalp, distended belly, rash, tooth enamel problems, even tics, and etc. He exhibited all of them. He is not the child that is underweight or has a lot of stomach issues. To many he looks very healthy, however when you see your child struggling you know. We went to our pediatrician and asked to be tested for Celiac disease, he assured me that he didn't have it, however it was a simple blood test, so he ordered it. It came back positive for Celiac disease. We have been waiting 2 months for a GI appt to confirm. So the mom in me has researched and researched finding that ataxia may be involved with my son. I know it is rare in children, however he exhibits many of the traits. My question is, has anyone else encountered these symptoms with their child? If so, does a gluten free diet help these symptoms? Like I said we are new to all this, just trying to get information before our GI appt. Thanks in advance!

I also have gluten ataxia, slight even residue CC is noticeable cause I start dropping things, and having coordination issues, I also tend to burn myself more due to lack of heat sensitivity and delayed reactions. Funny in that major contamination my stomach and guts notice it violently and I tend to lose motor control, but with tiny, tiny amounts I notice via said coordination issues and sort of a slight brain fog. I might suggest some things that help with m issues with the nerve issues and I attribute to faster healing. You can find them at the best price on LuckyVitamin.com I take 1tbsp each 3 times a day as an adult you might have him take 1-2tsp each 2-3 times a day before a meal. I also take magnesium which helps with nerve and brain health (do some research into if you wish). I take 2 versions on rotation but he might be better off with just Doctors Best Magnesium Powder you can mix it juice. I might suggest Natural Vitality but some people find that it is too harsh on the gut and can cause diarrhea. Do some research and perhaps talk to a doctor about these. Celiac causes nutrient absorption issues with b-vitamins, magnesium, iron, d3, folate, A etc. and you find this makes nerve issues and brain fog even worse.

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