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Need Neurology Recommendation SF Bay Area/Peninsula

AWC-California

By AWC-California
in Doctors

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AWC-California Rookie
AWC-California
Posted

Hi All,

I have been gluten free for about a year now (severe intolerance but have not been able to get firm diagnosis).  Most GI symptoms are under control but I continue to suffer from many of the common neurological symptoms.  As a result, I struggle at work because my job requires a lot of attention to detail and understanding of fairly complex subjects.  My managers know about my gluten intolerance but I haven't talked to anyone formally about the cognitive issues.

Can anyone recommend a neurologist in the SF Bay Area that won't just write me a prescription for pills?  Anyone have recommendations against going to a neurologist for this?  I am trying to improve my situation in order to get back to my usual solid performance at work.

I already work with a naturopathic doctor who has been a great help with advising me on diet and nutrition.

Any advice is greatly appreciated.

Have a wonderful day.

 

  • 2 weeks later...
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ravenwoodglass Mentor
ravenwoodglass
Posted

Sorry it has been so long with no reply for your query.  A neurologist is not likely to be able to help. Many are not even familiar with the neuro effects of celiac. What will help is time and being extremely careful to take all the precautions humanly possible to avoid CC.

Have you had your B12 levels checked? It is ideal to have past results to compare with a present reading if possible. From what I understand our bodies can loose the ability to utilize B12 even if results are still in a 'normal' range so being able to look at a dropping pattern can be helpful. If your levels are near or below 500 sublingual B12 or B12 injections may be helpful in your healing.

If you can't get those levels checked then go ahead a get a sublingual B12 at the drug store and take it for a bit. It is a water soluable vitamin so you will excrete the excess. It is important to get the sublingual as that bypasses the damaged gut.

The nervous system can take a very long time to heal but for many it will. If you have any movement problems a physical therapist can also be helpful. Mine got me walking normally for the first time in my life.  Folks like myself who went many, many years without a diagnosis can suffer some permanent damage but that doesn't happen with everyone.  It is hard to be patient when that patience can be required for at times years but hang in there.

  • 1 year later...
Sienna2013 Apprentice
Sienna2013
Posted

Reviving this thread as I am in search of better care for my child, diagnosed this spring with off the charts antibodies. She experiences significant mood effects from gluten and all I get from her GI and ped are blank looks - they aren't familiar with the idea that it can affect one's mental or emotional equilibrium or brain. (I would bet that if we scanned her brain, there would definitely be some evidence of damage.) 

Obvs we have her 100% gluten-free and are very cautious, but given that even the slightest glutening sends her into despair and suicidal ideation, I am looking for a doctor that *does* understand the connection and can give us better guidance so I can feel more confident that she'll stay safe until her gut heals. Any recommendations (in SF bay area, or anywhere really) would be welcomed! 

ravenwoodglass Mentor
ravenwoodglass
Posted
16 minutes ago, Sienna2013 said:

Reviving this thread as I am in search of better care for my child, diagnosed this spring with off the charts antibodies. She experiences significant mood effects from gluten and all I get from her GI and ped are blank looks - they aren't familiar with the idea that it can affect one's mental or emotional equilibrium or brain. (I would bet that if we scanned her brain, there would definitely be some evidence of damage.) 

Obvs we have her 100% gluten-free and are very cautious, but given that even the slightest glutening sends her into despair and suicidal ideation, I am looking for a doctor that *does* understand the connection and can give us better guidance so I can feel more confident that she'll stay safe until her gut heals. Any recommendations (in SF bay area, or anywhere really) would be welcomed! 

I am sorry that you are all having to go through this. I know all too well the neuro issues she is going through. The world seems so hopeless under that gluten cloud. But it does lift.  There isn't much a neurologist is going to be able to do except to encourage her to be as strict as possible.  It would be a good idea to have your GP or GI do a vitamin and mineral panel if that hasn't already been done. We do sometimes need supplementation while healing as some nutrients do have an impact on the nervous system function.

What I find helps me the most is knowing that it is the gluten and it will pass. It is a horrible feeling when it is happening and is hard on ones loved ones.  All you really can do to help her is to remind her that it is the gluten that is making her feel so bad. Try to provide distractions and understanding. If you haven't already do read the Newbie 101 thread at the top of the Coping section it has a lot of good info for you.  These episodes will come less often as accidental glutenings become less frequent. Ask any questions you need and feel free to vent on the tough days.

Sienna2013 Apprentice
Sienna2013
Posted

Thanks, Ravenwood! Good advice on all fronts. I will keep telling her "this too will pass - just wait it out." Hard to see her suffer though. :(
 

Jmg Mentor
Jmg
Posted
1 hour ago, Sienna2013 said:

Thanks, Ravenwood! Good advice on all fronts. I will keep telling her "this too will pass - just wait it out." Hard to see her suffer though. :(
 

Hello :) 

i don't have anything of substance to add to ravenwoods excellent post above, it's really good advice. This is the primary way that gluten affects me also and as bad as it is to undergo it myself, it must be so difficult for a parent to watch it happen to their child. So I wish you both the very best. 

You don't I think mention how old he daughter is? Is she old enough to understand what's happening to her? This forum has been very helpful for me in making sense of the initially crazy sounding notion that something which I ate every day of my life was having such a profound effect on my mental health. Reading some of the accounts here and getting to know others in the same boat helped me immensely, so depending on your daughters age that could be something which would help her too.

Best of luck to you both!

matt

  • 6 months later...
Sienna2013 Apprentice
Sienna2013
Posted

Updating: while her levels are not yet down to normal, she is improving. Things that seem to help:

- Time

- Strict gluten-free diet (obvs)

- Supplementing Vit D and Magnesium (we are currently supplementing magnesium glycinate 3 capsules (= 90% of RDA)

- Kombucha - she swears it is helping her stomach, and she doesn't like yogurt, kefir, pickles, etc. If it works, great! and if it's placebo effect, that's OK with me too! 

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