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Cerebellar atrophy

Arslan

By Arslan
in Meet Up Room

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Arslan Rookie
Arslan
Posted

Hi,

I'm 23 years old. I'm a patient of cerebellar atrophy and my gluten sensitivity tests have also come positive. My symptoms are really strong and I just want to ask if gluten free diets help and how much. When can I expect some improvement in my walking, vision, movements of hands and feet, and focus and everything. If there's someone who can answer these questions, please do. 

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kareng Grand Master
kareng
Posted
2 minutes ago, Arslan said:

Hi,

I'm 23 years old. I'm a patient of cerebellar atrophy and my gluten sensitivity tests have also come positive. My symptoms are really strong and I just want to ask if gluten free diets help and how much. When can I expect some improvement in my walking, vision, movements of hands and feet, and focus and everything. If there's someone who can answer these questions, please do. 

Have you been tested by a medical doctor for Celiac?  You might want to do that before going gluten-free.

Arslan Rookie
Arslan
Posted
  • Author
6 minutes ago, kareng said:

Have you been tested by a medical doctor for Celiac?  You might want to do that before going gluten-free.

My doctor says that there is a strong chance that I may have celiac. If more test are required, the doctor will guide me soon because we have an appointment in 3 - 4 days.

ravenwoodglass Mentor
ravenwoodglass
Posted
5 hours ago, Arslan said:

My doctor says that there is a strong chance that I may have celiac. If more test are required, the doctor will guide me soon because we have an appointment in 3 - 4 days.

Please do not go gluten free until after you have had all celiac related tests. If you have a endoscopy be aware that if your symptoms are primarily neuro that the endo may come back negative. That doesn't mean you are not celiac. Have you had blood tests or an MRI yet?  With neuro symptoms you may have what are called UBOs (unidentified bright objects) on the MRI. some neuros are not aware that these are diagnostic of the antibodies attacking the brain. If you do have celiac you can heal. It will take time though. It took 6 months till I could walk unaided for example. I still needed a lot of physical therapy before I regained my balance and walk without an abnormal gait. Do make sure your doctor has tested your B12 levels, they should be over 500. Supplementing with sublingual B12 may be helpful even before diagnosis but will not interfer with celiac testing. You might get some degree of relief from it but not a sure thing.  I hope that what you have going on is celiac as that can be treated by a 'not so' simple diet change. Do read the Newbie 101 thread at the top of the Coping section while you wait to finish testing. It is a good idea to trial the diet after testing, strictly, even if tests are negative. some folks show a false negative on testing so a strict trial is advised after testing is finished.

Ennis-TX Grand Master
Ennis-TX
Posted

Raven gave a good suggestion, there is something among celiacs in some cases called gluten ataxia, and in some cases gluten ataxia can be present without celiac. Getting the proper celiac testing done first before going gluten free might actually give you some good news (not down playing your previous dia just saying if it is caused by gluten ataxia you can at least stop it with diet)
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I myself have gluten ataxia issues, one of my symptoms with minor exposure is loss of feeling in my hand and feet, and dropping stuff like crazy. Major and straight up consumption of pure gluten products as what happened at a restaurant in 2016 caused me to loose complete motor control and collapse when I got home. ...with other issues. In my cause my immune system will also attack my nervous system and brain. It has caused some damage that caused some issues more long term but that is another story. Point being this might be a light for you.

Arslan Rookie
Arslan
Posted
  • Author

thank you both. I have had Brain MRI which clearly diagnosed cerebellar atrophy. 

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