Beri Beri

[Whoelse]

Hello

I have such a thiamine deficiency that I have ber beri. Its very uncommon in non third world countries that supplement their grains. My family doctor gives me lectures on nutrition which I find funny and failed to send my celiac results to the gastroenterologist she referred me to after I asked her to do so. However the GI doctor has been great. He ordered an endoscopy this Monday and says he is almost positive I have Celiac disease.

What I would like to know does anyone else out there have Beri Beri? I have been given thiamine orally with no improvement and this week they are going to start IV Thiamine on an outpatient basis.

Sure would like to hear from someone else experiencing this numbness and pain in the extremities and their outcome.

[debmidge]

Dear Whoelse:

I don't have this, but I learned that Beri Beri or B1 deficiency is a result of the malnutrition from malabsorption of celiac. A person can have a thiamine deficiency without having celiac. My brother had it & he's not celiac - his was from another cause. Once he got B1 injections the symptoms subsided and now he's on vitamins and was instructed to eat better. He had a condition wherein he wasn't absorbing nutritients either (self inflicted I have to add).

It sounds like whatever you have, you've had it for a while for Beri Beri to show up. I suppose you have "pins & Needles" in legs and hands; a stiff kind of walk; are you stumbling a lot? ; vision changes; weakness; loss of memory; are you saying goofy things?; unable to tolerate coldness; pale nature of skin? Beri Beri makes for nerve damage.

If it's celiac, then going to a gluten free diet should help to reverse this. If you have the symptoms I named above, let your doctor know. He might want to give you B1 and other B's injection so that you get relief that much quicker than waiting for vitamin pills to build it back up. It can take a while for vitamins to build it up to the levels it should be. Without thiamine, you can become critical.

Stay away from alcohol in all forms when you have thiamine deficiency as alcohol can contribute to the problem. Alcohol can interfere with the digestive action of the liver and pancreas which would contribute to malabsorption too. The article from healthcentral.com doesn't indicate how much alcohol is needed to be bad for you, but just that use of it could contribute.

I wouldn't be surprised if all newly diagnosed celiacs who have been undiagnosed for many years have the beginning stages of Beri Beri and not know it. That may be why if you don't get any other celiacs mentioned that they too had Beri Beri. Doctors are having a hard time diagnosing celiac let alone another rare disease like Beri Beri. I believe my husband was close to it because he had the pins and needles in the legs and an increase in his restless leg syndrome and I have a suspicion there's a connection there.

[debmidge]

My info was taken from healthcentral.com; looking up two similar diseases:

beriberi and Wernicke-Korsakoff syndrome

The root of both diseases is thiamine deficiency except Wenicke-Korsakoff states that minimal or moderate alcohol use is a factor while it is not in Beriberi. However, I show Wernicke as it involves the same factors - malaborption and it gives more info than just the Beriberi article does.

Another group at risk for Beriberi: anorexics and prisoners of war. According to the article, without treatment it can progress steadily to death. This is what the general public doesn't understand about celiac. That untreated and undiagnosed, it can ravage a person's body - there could be irreversible damage. That's why we must be so pro-testing for all. Celiac disease is shrugged off like it's only a nuisance like a cold. I see celiac disease as the disease of the new century -- where it was once at the back of the medical textbook and ignored. I see celiac disease as the root of a lot of other health problems of undiagnosed celiacs. But we shall see what the medical community does with the info from the NIH conference last month.

[Guest Eagle]

Hello, I also am trying to recover from the effects of a thiamine deficiency. Mine wasn't caught immediately, I had to figure it out for myself. My doctor doesn't believe I have Celiac because all I have are the Enterolab results. But I know now from experience that once I stopped eating gluten I no longer bloat up and feel sick. The thiamine deficiency must have been going on for awhile and then it started causing nervous system inflammation, ataxia and swollen gums. I started taking some B supplements hoping that one of them would work until I got back the results from the vitamin B panel. I hope that my nervous system recovers from this, although I would imagine that I will be left with some deficit. How much B1 are you taking during your recovery? I would like to know how it goes.