New Als-Type Symptoms After 6 Months Gluten Free?

[Integrous]

I learned I had celiac disease in December 2013 and have been religiously gluten free since then (although my last blood test in March showed that my antibody levels were still over 200). I had a MRI, MRA & MRV of my brain in January which showed some age-appropriate, non-specific "white spots" on my brain, but no lesions or abnormalities. Five or six weeks ago I began to experience ongoing muscle weakness in my legs, usually when at rest. It then spread to my arms. About 10 days ago, I started to experience muscle twitches all over my body (feet, calves, thighs, arms, legs, chest, back, shoulders, throat) when at rest. The twitches are becoming more frequent and lasting longer. My neurologist said that multiple sclerosis is unlikely based on my prior normal brain studies but ALS is a strong possibility, and he scheduled an EMG in 2 weeks. In the meantime, I am in absolute despair. I've read that untreated celiac disease can mimic ALS, but it doesn't seem possible that I'd get ALS-type symptoms from celiac disease 6 months AFTER going gluten free. Anyone have any insight? Thanks.

[nvsmom]

How scary for you. (hugs)  I have read that celiac disease gluten ataxia and such can mimic ALS but I do not know much about it.  

 

You have only been gluten-free for 6 months, and it appears that you are one of the unlucky ones whose autoantibody levels falls very slowly. I would interpret high antibody levels to mean that your body has not yet stopped reacting to it's previous exposures to gluten. In other words, you are barely started into the healing and still sick.  You will need more time to get those antibody levels down and truly start healing.

 

I would also recheck how gluten-free you are.  Those are pretty high levels for being gluten-free 6 months.  You've checked lotions, soaps, shampoos, and conditioners?  Are your vitamins and medicines gluten-free?  Are all of your spreads and butters untouched by gluten eaters?  Did you replace baking supplies that may have been previously cc'ed by wheat (like a flour coated measuring cup)? Is your house gluten-free - is there a chance of cc? That all might be worth rechecking just to be safe.

 

Best wishes.  I hope someone else can offer more help.

[mamaw]

I  was  dx'd  with ALS  eleven years  ago.... After  three  months I went  gluten-free...only been glutened  once  in that length  of  time.. I'm  Very  strict in fact  I'm OCD on  gluten!!!!.. But  when  I  first  was  Dx'd  I  couldn't  walk, talk  much ( slurred), &  just  plain  hard to think straight...I  could  only  stand  for  a  minute  or  so. The  best  way I know  how to describe  it  was  I felt  like a  melting  snowman....I also  choked  on  food...&  water  at  times... Fast  fwd eleven years  later :  I'm  still alive,  walking, talking  &  eating gluten-free!  I  still  have  bouts  of  weakness  but  all in all  I'm glad to be  alive..... I  still do  have  lower  motor  neuron  damage in  my  lower  extremities. and  slight  in  my upper.....

Also please  get  checked  for Lyme  Disease.........

I  would  also  stay  away from  all processed  gluten-free  food only  eating  all  heal;thy  gluten-free  foods.... I  also  start  on a  vitamin &  mineral  therapy  as  your  body  may  be so depleted  of  nourishment  the extra  boost is needed....

I  do a lot  of  extra  things  to help  my body  survive....

blessings