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Recently Diagnosed Needs Advice

MarMcL

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MarMcL Newbie
MarMcL
Posted

Hi All! I am new to the forum so any advice is greatly appreciated. Was diagnosed with celiac disease (villus atrophy) and pernicious anemia in January 2015. Went gluten free and started monthly B12 injections. Started developing a load of scary neurological symptoms in July. Suspected MS. Had brain scan and it was clear. Upped my B12 which has helped symptoms but tingling in legs and back persists. Could this be related to celiac? I find it hard to believe though I've little knowledge of the extent of the disease. B12 is now very high so I doubt its that. I have a one sided facial rash too which l attribute to the high B12. So confused. In the last month, I've gone back to very plain, home cooked food. Only processed food l eat are Larabars. Gastroentronologist said I've both symptomatic and non symptomatic celiac disease. I'm very concerned. Negative for lupus and RA. Neurologist ordered cervical spine MRl. He says my reflexes are fine. 

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manasota Explorer
manasota
Posted

Welcome!  I have Celiac.  I also have intermittent peripheral neuropathy and rashes.  Both of these rotate locations throughout my body.  None of my doctors have found any cause for these; so they assume it's the Celiac (the gift that keeps on giving).

My zinc level was on the lower end of normal; so he suggested trying zinc 25mg/day.  It has reduced the PN a bit.

After your doctors rule out additional diseases, maybe it's possible that your symptoms are "simply" from Celiac?

Your diet sounds like it's the best!  Good for you!  You got "on board" much quicker than I did.  I hate cooking; but now only eat whole foods I make from scratch in my kitchen.  Not much fun.

Doesn't really sound like you need my advice.  Sounds like you're doing everything right.  If they can't find any other diseases, maybe it's "just" the Celiac.

 

nvsmom Community Regular
nvsmom
Posted

Unfortunately, ataxia, neuropathies, and arthralgias are often some of the slower symptoms to improve.  My arthritis actually became worse from 2-6 months gluten-free. I was convinced there was more wrong.  After a year I was showing improvements, and by 2-2.5 years I was mostly better.

 

I agree that you should look into it some more, but be prepared to wait it out if it is celiac disease caused.  Hang in there.

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