Neurological Conditions

[Kylie]

Hello all,

I was wondering if anyone else who had celiac had any other sort of neurological disorder. I have, well it has many names, RSD (Reflex Sympathetic Dystrophy or Reflex Neurovascular Dystrophy) also known as CRPS (complex regional pain syndrome). RSD is a neurological condition that makes the body unable to interpret signals and so the body feels nothing but pain. It started in my leg, but has spread to my entire body. I also have it internally in my stomach, probably from celiac pain. I was diagnosed with celiac in 2005 and my life has never been the same. Now I have the diagnosis of RSD and have been the sickest I have ever been. I have spent the last year in and out of the hospital with my RSD and every time I have an RSD attack my celiac gets really bad too. I can

[BRUMI1968]

I've not heard of RSD - it sounds quite disturbing, and I can see why a person would get PTSD from such a thing.

All I can think of on the neuro bit I imagine has been checked for. B12, since celiac sufferers don't absorb it well; heavy metal poisoning/toxicity; complete eletrolyte imbalance (inverted sodium potassium ratio, etc. - good idea to check out if it's "electrical" in nature, or if they think it might be). Boy, it's a tough one, and I can't say I have any experience with it. My only neuro symptoms are dizziness, and that could well just be BPPV (benign vertigo) which is not typically related to gluten at all. If your B12 is even low normal, they should check your homosystein levels too, or MME or something like that, to double check it, since high folate count can falsely elevate your B12. My folic acid was high last check, and my B12 barely made it into the 'normal' - by like one point.

Hope you feel better, and I hope folks here can help you. I know lots of folks here have had interesting issues with their celiac disease and other peripheral stuff - someone surely will know something.

Take care.

-Sherri

[Lizz7711]

Can't speak to that directly, but i've been studying alot about mercury from amalgam fillings and the myriad of damage in our bodies it can do, including neurologically. If I were you, if you have amalgam fillings, i'd look into finding a biological dentist who will work with you to have them safely removed (check out wwwdot iaomt dot org for more info) as this could be an underlying cause of your issues. My dad had shingles a year and a half ago and still has terrible nerve pain in his left arm to the point he can't wear a shirt or expose his arm to outside elements like wind...i'm convinced part of the issue for him too is mercuy...plus he has gold and mercury, and that causes galvanic reactions in the mouth.

just something to consider, hope you feel better soon,

Liz

  Kylie said:

Hello all,

I was wondering if anyone else who had celiac had any other sort of neurological disorder. I have, well it has many names, RSD (Reflex Sympathetic Dystrophy or Reflex Neurovascular Dystrophy) also known as CRPS (complex regional pain syndrome). RSD is a neurological condition that makes the body unable to interpret signals and so the body feels nothing but pain. It started in my leg, but has spread to my entire body. I also have it internally in my stomach, probably from celiac pain. I was diagnosed with celiac in 2005 and my life has never been the same. Now I have the diagnosis of RSD and have been the sickest I have ever been. I have spent the last year in and out of the hospital with my RSD and every time I have an RSD attack my celiac gets really bad too. I can

[ShayFL]

A device called a "Rebuilder" really helped the nerves in my feet and hands for neuropathy. Dont know if it would work for your condition though.

I would have B12 & MMA tested plus Ferritin as B12 and iron levels can affect neurological function.

[ravenwoodglass]

I have had RSD. It happened after I had surgery on my knee to repair the meniscus. When they removed the stitches a few days later I had lost all muscle from where they put the tourniqet down. The doctor was almost as horrified as I was. It is extremely painful. One thing they gave me that helped was amitriplymine at a very low dose at bed time. I don't know if your doctor has tried that but it is a common treatment. Physical therapy was also helpful but mine was no where near as all inclusive as yours.

Something that helped me a lot even preceliac diagnosis was sublingual B12. You may want to add it to your daily routine for a while and see if it helps. Make sure it is sublingual though and make sure to let your doctor know you are taking it if he tests your B12 levels.

One thing I am going to ask is if you take any meds or supplements and if you do have you been rigorous about checking their gluten statis? If you take generics you need to recheck those ideally at each refill as the binders can be changed at will.

Many times those of us with strong neuro features tend to be a bit more sensitive. Make sure you are eliminating gluten from all toiletries, pet foods and litters, if you craft or do home improvement stuff many glues, paints, wallpaper pastes, clays, drywall compound etc are not safe. Is your significant other a gluten eater or do they drink gluten beverages like beer? If so they can CC you with a kiss. Brushing teeth will take care of that issue.

Another thing you may want to consider is an appointment with a pain management clinic if there is one near you. As far as the PTSD goes, well I suffer from that also and fighting it is hard. I try to do little steps and have been taking a supplement called Stress Assist that seems to help a bit. Sometimes the best treatment for that is counseling with a good psychologist. They can be helpful in teaching ways for overcoming it once you find one you can work with well.

I hope you get some relief soon.

[janetcanhelp]

Hi Kylie,

Wow, I have had all the same things, and more: Celiac, RSD, Asperger;s, Adrenal Fatigue. I take a B Complex combo (high dosage), Celexa, no wheat,oak,rye,barley products; Synthroid for HypoThyroid. I take a multi vit, Co EnzymeQ10, GABA and 5HTP. I have 1/2 Ambian to sleep. We who are highly sensitive have a job to do: stay calm! My nervous system went bonkers. Now, I pray, keep things in perspective, ice anything down & take hydrocodone if I sprain an ankle, etc (to offset any RSD trying to begin, and believe me, it works!) Do what you love, breathe, remove anything (or anyone) who tries to make you crazy. This is your life, and when you are happy, things get better.

Hugs, Janet

  On 11/13/2008 at 2:33 AM, Kylie said:

Hello all,

I was wondering if anyone else who had celiac had any other sort of neurological disorder. I have, well it has many names, RSD (Reflex Sympathetic Dystrophy or Reflex Neurovascular Dystrophy) also known as CRPS (complex regional pain syndrome). RSD is a neurological condition that makes the body unable to interpret signals and so the body feels nothing but pain. It started in my leg, but has spread to my entire body. I also have it internally in my stomach, probably from celiac pain. I was diagnosed with celiac in 2005 and my life has never been the same. Now I have the diagnosis of RSD and have been the sickest I have ever been. I have spent the last year in and out of the hospital with my RSD and every time I have an RSD attack my celiac gets really bad too. I can

[BramelyHall]

My neuropathy went away when I stopped taking too many B vitamins. B6 will really make your nerves burn.