[chamade]

I have had burning and tingling in my arms and legs for a little more then 2 years now. Started pretty suddenly with tingling overnight, which developed into burning in a few months. Also have twitching bodywide. I have had many ups and downs with flareups every few weeks and after attempting to run or doing something else physical.

In addition to all this I lost about 40-50 pounds in these 2 years. 2 months I ago I had a acute pancreatitis which landed me in the hospital for a few days. Diagnosed with malabsorption due to pancreatic insufficiency so started taking enzymes which are allowing me to gain some weight again. I have also had a small bowel biopsy which showed flattened villi, which could be due to Celiac yet my blood tests were negative.
Needless to say all this could have caused lack of certain vitamins/minerals that can cause neuropathy.
They will be doing further testing at the UCSF to rule out diseases that can affect both the GI tract and the nerves, but I am hopeful that it was due to the malabsorption. My B12 levels were always normal (800-1100), but other vitamins (B1,B6,E,D) and minerals could have caused it.

Wondering if anyone else here had PN due to malabsorption?

[daniella]

Hi I am sorry. I think there are other tests for celiec when your bloodwork says you don't have but there are still reasons why you feel you may. As for pancreas and weight loss. At one time they thought I had pancreatitis. I was also underweight and that had me on a meal plan to gain weight but it was balanced with proper nutrients at each meal and snack to put less stress on this function but also to allow my body to get the nutrients it needed. I am not sure if this could help you in weight gain and nurishment. Hopefully Mrs D will come cause she will know more what to take to help you out. At the hospital what specialties are looking into your case? Hope you feel better and get some direction

[glenntaj]

http://neuromuscular.wustl.edu/nother/vitamin.htm

There are quite a number of vitamn/mineral deficiencies that can cause neuropathic symptoms, which may be related to malabsorption syndromes of the gastric tract.

Most non-specialists aren't highly aware of these, though, and don't do the necessary testing to find/rule them out.

[mrsD]

Low blood sugar will do it also... cause various muscle sensations and twitching. (I get this), and I read in one book a while ago that up to 70% of people with low blood sugar experience twitching.

I'd consider acetyl carnitine for you, and CoQ-10. Muscle issues may reflect a mito problem and these two nutrients support the mitochondria. Some researchers now think many more people have mild mito disease and are never diagnosed properly.

Start at 500mg a day of the carnitine and work up to 2 grams a day if necessary. Take in divided doses as carnitine is not absorbed well, and take on an empty stomach too. The CoQ-10 --start at 100mg a day of a quality type that states it has absorption enhancement. (like Q-sorb or Bioperine). However, the Bioperine additive may interact with any drugs you use, so unless you don't take prescription drugs, it should be avoided.
This website has a very good CoQ-10... and information that explains why enhancement is so important:
epic4health.com
But there are other types with Q-sorb around as well.

I get alot of muscle pain when I excercise and find carnitine extremely useful.

[chamade]

Thanks for the responses.
As far as weight gain, it's coming naturally now that I am taking digestive enzymes. I was loosing weight before no matter what the diet.
My pancreas has not been secreting enough enzymes, hence the weight loss due to malabsorption. Malabsorption was proven by a stool test (low levels of elastase and excess fat in stool). It's too bad they haven't done any vitamin tests besides B12 before I started taking enzymes as now it will be hard to prove that I ever had a vitamin/mineral deficiency.
The recent finding of flattened villi in the small intestines is quite odd according to my GI since it is very unusual to have two seemingly unrelated things like pancreatitis and intestine atrophy going on. They are now doing a genetic test for Celiac to see where that takes us. Next week I also have a endoscopic operation to fix a congenital issue with my pancreas which is supposedly at the root of the pancreatic insufficiency.

At one point I had a CIDP diagnosis as my NCV showed demyelination and when they repeated it 6 months later it was perfectly normal, go figure.
At out next appointment I will insist that my neuro order a skin biopsy as that will at least prove that the horrible pains are not in my head and we can track the progression.

So essentially since starting pancreatic enzymes(3 months) I have been gaining weight but the neuro pain has not been improving. According to my neuro/GI there are 3 possibilities:
1. malabsorption caused nerve damage but healing is slow
2. malabsorption and paresthesias unrelated
3. another disease (like mito failure, autoimmune,..) at the source of both nerve and GI issues