about B-1

[Guest guest]

Hi Tristan,I have low B-1 too despite taking regular B complex for years. I discovered that taking co-enzyme B vitamins was the best source for it since it goes into the blood stream directly. I take Country Life co-enzyme B tablets away from food (2 hours/1hour--usually early in the AM and late at night). I found the sorbitol sublinguals didn't agree with me--and found later sorbitol is often made with gluten. Taking the co-enzyme B's has made a huge difference for me. My legs and feet no longer burn, my heart no longer palpates rapidly at night or upon easy exertion, I can now tolerate using a jacuzzi and sauna etc. etc.Going off the gluten completely has made even more of a difference, however they both have been really important.I applaud your efforts with Kaiser. I had no luck with them at all and finally quit, after having spent big bucks for several years for not much. They wanted to throw anti depressants on me when I told them

I wanted an answer and was upset not getting one. It was an alternative doctor who discovered the B-1 problem, which he also found with my mom--and, although he didn't make much of it, I did after I looked it up on the Internet. The thing is is that without the B-1 it makes basic carbohydrate and protein digestion iffy plus it degrades the nervous system etc. etc. Look up genetically inherited Beri Beri found in Scandinavia! This is it. Beri Beri isn't supposed to happen in this country I was told in a basic anatomy class! (Unless you are an alcoholic. Which I am not, and I am guessing you aren't either.) So no wonder no one thinks it exists here. You can't even get B-1 shots. Thus in desperation I found the co-enzymes and I found they work well most fortunately indeed. Its best to take them with other B's anyway since otherwise they say it can create an imbalance.Good luck and keep us posted as to your

improvements!BeaTrVerb@... wrote: I really appreciate all the responses I've gotten. Thank you. I hadn't thought to just google "celiac kitchen" - too obvious, I guess! I was just looking at the "official" sites (celiac.org, nih, mayo, etc.). My kids are being tested this week (as are my two sisters and my mom) - the basic antibody tests plus the test for the genetic markers. If they don't have it, and it doesn't threaten my health to do so, I

would prefer not to completely limit their in-house diet to gluten-free. All of your suggestions for labeling foods clearly, putting the gf foods on the top shelf in a shared pantry, getting a dust vac and separate colanders, etc, are fantastic. Thank you. Does anyone have advice about a follow-up plan - that is, after diagnosis and starting the gf diet, what kind of follow-up plan should I expect (demand?) of my physician. I've read that I should have a bone density test. Anything else? I've already had a ton of blood work (including lots to do with liver function) and nothing's unusual except for the one thing that set me on the path of discovering I have celiac (very low B1 levels, which one doctor dismissed as lab error even though a basic google search linked low B1 to my one and only symptom!). I'm at Kaiser and I owe getting diagnosed in 7 months to our refusing to accept there wasn't an answer to why my B1 levels were low and to one nutritionist (who I

insisted on seeing) who immediately thought of celiac. So I know how proactive I am going to have to be. Also, does anyone know of a live support group? I think it would help me sort through some of the emotions I'm having as I start on this gf path. Being careful about my diet isn't completely new to me - I'm a "vegaquarian" (no chicken or meat) - but obviously going gf is much more difficult and, ultimately, more important to get completely right. I'm alternately ok and freaked out. Thanks again. Tristan **************Create a Home Theater Like the Pros. Watch the video on AOL Home. (http://home.aol.com/diy/home-improvement-eric-stromer?video=15?ncid=aolhom00030000000001)

[Guest guest]

Hi Bea, Thanks for your thoughtful message. I, too, had a physician try to prescribe anti-depressants - this on my second visit with her to try to figure out my neuropathy, and before I'd even met with a neurologist or had much blood work done. When I responded, "I don't feel depressed; do I seem depressed?" she said, "Not significantly." Which cracked me up (which should have been a sign that I wasn't, in fact, depressed). Then a neurologist who decided my b1 deficiency was "idiopathic" (which roughly translates in layperson speak to mean "the medical establishment can't figure it out so we'll just blame your body for being weird) tried to push anti-anxiety meds on me because I sounded pissed off when I told him I was tired of no doctor caring to figure out why my b1 was deficient. With all the literature out there denouncing the overprescription of anti depressant and anti anxiety meds, it's amazing to me that so many physicians haven't started to become more careful. (I mean, how about screening me for depression first? How about suggesting I take up yoga or something to deal with my anxiety about not getting a diagnosis!)

Yes, beri beri; not too thrilled when I researched that disease! (And no, I'm not an alchoholic or anorexic!) I was able to get B1 shots, once a day for five days, and my b1 levels seem ok now. (But each time I went to get my shot, the nurse tried to give me b12!) Thanks for the info about which supplement to take. I just realized that the b1 I was taking contains gluten. Oh, well.

Thanks again, it's so great to have this resource!

Tristan

In a message dated 3/25/08 10:36:25 PM, beagarth@... writes:

Hi Tristan,

I have low B-1 too despite taking regular B complex for years. I discovered that taking co-enzyme B vitamins was the best source for it since it  goes into the blood stream directly. I take Country Life co-enzyme B tablets away from food (2 hours/1hour-I have low B-1 too despite taking regular B complex for years. I discovered that taking co-enzyme B vitamins was the best source for it since it  goes i

Taking the co-enzyme B's has made a huge difference for me. My legs and feet no longer burn, my heart no longer palpates rapidly at night or upon easy exertion, I can now tolerate using a jacuzzi and sauna etc. etc.

Going off the gluten completely has made even more of a difference, however they both have been really important.

I applaud your efforts with Kaiser. I had no luck with them at all and finally quit, after having spent big bucks for several years for not much. They wanted to throw anti depressants on me when I told them I wanted an answer and was upset not getting one. It was an alternative doctor who discovered the B-1 problem, which he also found with my mom--and, although he didn't make much of it, I did after I looked it up on the Internet. The thing is is that without the B-1 it makes basic carbohydrate and protein digestion iffy plus it degrades the nervous system etc. etc. Look up genetically inherited Beri Beri found in Scandinavia! This is it.

Beri Beri isn't supposed to happen  in this country I was told in a basic anatomy class! (Unless you are an alcoholic. Which I am not, and I am guessing you aren't either.) So no wonder no one thinks it exists here. You can't even get B-1 shots. Thus in desperation I found the co-enzymes and I found they work well most fortunately indeed. Its best to take them with other B's anyway since otherwise they say it can create an imbalance.

Good luck and keep us posted as to your improvements!

Bea

TrVerb@... wrote:

I really appreciate all the responses I've gotten. Thank you. I hadn't thought to just google "celiac kitchen" - too obvious, I guess! I was just looking at the "official" sites (celiac.org, nih, mayo, etc.).

My kids are being tested this week (as are my two sisters and my mom) - the basic antibody tests plus the test for the genetic markers. If they don't have it, and it doesn't threaten my health to do so, I would prefer not to completely limit their in-house diet to gluten-free. All of your suggestions for labeling foods clearly, putting the gf foods on the top shelf in a shared pantry, getting a dust vac and separate colanders, etc, are fantastic. Thank you.

Does anyone have advice about a follow-up plan - that is, after diagnosis and starting the gf diet, what kind of follow-up plan should I expect (demand?) of my physician. I've read that I should have a bone density test. Anything else? I've already had a ton of blood work (including lots to do with liver function) and nothing's unusual except for the one thing that set me on the path of discovering I have celiac (very low B1 levels, which one doctor dismissed as lab error even though a basic google search linked low B1 to my one and only symptom!). I'm at Kaiser and I owe getting diagnosed in 7 months to our refusing to accept there wasn't an answer to why my B1 levels were low and to one nutritionist (who I insisted on seeing) who immediately thought of celiac. So I know how proactive I am going to have to be.

Also, does anyone know of a live support group? I think it would help me sort through some of the emotions I'm having as I start on this gf path. Being careful about my diet isn't completely new to me - I'm a "vegaquarian" (no chicken or meat) - but obviously going gf is much more difficult and, ultimately, more important to get completely right. I'm alternately ok and freaked out.

Thanks again.

Tristan

**************Create a Home Theater Like the Pros. Watch the video on AOL Home. (http://home.aol.com/diy/home-improvement-eric-stromer?video=15?ncid=aolhom00030000000001)

[Guest guest]

Which Kaiser do you go to?

H.

In a message dated 3/26/08 2:23:29 PM, beagarth@... writes:

Thus I am wondering if you could tell me who your doctors are at Kaiser so we could start getting some results here for my mother--and my brother who also has celiac (he has Down's Syndrome--and is much better being on diet though of course he is unconvinced to the seriousness since he reflects all my mothers attitudes).

**************Create a Home Theater Like the Pros. Watch the video on AOL Home. (http://home.aol.com/diy/home-improvement-eric-stromer?video=15?ncid=aolhom00030000000001)

[Guest guest]

Hi Tristan,It just goes to show I don't really know how to work the system very well. I am glad you have. It gives me more hope. I know I should get a doctor conversant with all this in case I ever end up in the hospital. I am actually struggling still with a UTI/kidney inflammation issue due to CC problems after I went off all trace glutens. After 2 years without a sniffle my body took a major dive with the CC --first from a boyfriend who kissed me right after drinking whiskey and then a birthday party at a Thai restaurant that I previously thought was safe and some tea given to me by a food server who had just prepared someone else a sandwich! I just wasn't aware or prepared for the reaction afterwards. I didn't know at first what was happening and it completely tired me out which made me vulnerable to getting this bacterial infection first in my lungs and then the UTI. Years ago I lost 1/2 of my right kidney due to repeated UTI's and pyelonephritus. I am thinking

of trying to get a doctor through the local county hospital just in case my herbs and diet don't help me sometime or other or if I get in a car accident and end up hospitalized. These are things I don't usually choose to think about but now I realize its foolish not to. Its just hard since I have also had the problem of being thought "too weird" by the medical establishment--so have had to take my medical difficulties and try to figure them out myself. I have done so greatly and done well with diet and herbs, however that at times only goes so far.Thus I am wondering if you could tell me who your doctors are at Kaiser so we could start getting some results here for my mother--and my brother who also has celiac (he has Down's Syndrome--and is much better being on diet though of course he is unconvinced to the seriousness since he reflects all my mothers attitudes). And yes, thank you--its so great to finally be able to communicate these issues to someone

about these things.BeaTrVerb@... wrote: Hi Bea, Thanks for your thoughtful message. I, too, had a physician try to prescribe anti-depressants - this on my second visit with her to try to figure out my neuropathy, and before I'd even met with a neurologist or had much blood work done. When I responded, "I don't feel depressed; do I seem depressed?" she said, "Not significantly." Which cracked me up (which should have been a sign that I wasn't, in fact, depressed). Then a neurologist who decided my b1 deficiency was "idiopathic" (which roughly translates in layperson speak to mean "the medical establishment can't figure it out so we'll just blame your body for being weird) tried to push anti-anxiety meds on me because I sounded pissed off when I told him I was tired of no doctor caring to figure out why my b1 was deficient. With all the literature out there denouncing the overprescription of anti depressant and anti anxiety meds, it's amazing to me that so

many physicians haven't started to become more careful. (I mean, how about screening me for depression first? How about suggesting I take up yoga or something to deal with my anxiety about not getting a diagnosis!) Yes, beri beri; not too thrilled when I researched that disease! (And no, I'm not an alchoholic or anorexic!) I was able to get B1 shots, once a day for five days, and my b1 levels seem ok now. (But each time I went to get my shot, the nurse tried to give me b12!) Thanks for the info about which supplement to take. I just realized that the b1 I was taking contains gluten. Oh, well. Thanks again, it's so great to have this resource! Tristan In a message dated 3/25/08 10:36:25 PM, beagarth writes: Hi Tristan, I have low B-1 too despite taking regular B complex for years. I discovered that taking co-enzyme B vitamins was the best source for it since it goes into the blood stream directly. I take Country Life co-enzyme B tablets away from food (2 hours/1hour-I have low B-1 too despite taking regular B complex for years. I discovered that taking co-enzyme B vitamins was the best source for it since it goes i Taking the co-enzyme B's has made a huge difference for me. My legs and feet no longer burn, my heart no longer palpates rapidly at night or upon easy exertion, I can now tolerate using a jacuzzi and sauna etc. etc. Going off the gluten completely has made even more of a difference, however they both have been really important. I applaud your efforts with Kaiser. I had no luck with them at all and finally quit, after having spent big bucks for several years for not much. They wanted to throw anti

depressants on me when I told them I wanted an answer and was upset not getting one. It was an alternative doctor who discovered the B-1 problem, which he also found with my mom--and, although he didn't make much of it, I did after I looked it up on the Internet. The thing is is that without the B-1 it makes basic carbohydrate and protein digestion iffy plus it degrades the nervous system etc. etc. Look up genetically inherited Beri Beri found in Scandinavia! This is it. Beri Beri isn't supposed to happen in this country I was told in a basic anatomy class! (Unless you are an alcoholic. Which I am not, and I am guessing you aren't either.) So no wonder no one thinks it exists here. You can't even get B-1 shots. Thus in desperation I found the co-enzymes and I found they work well most fortunately indeed. Its best to take them with other B's anyway since otherwise they say it can create an imbalance. Good luck and keep us posted as to your

improvements! Bea TrVerb@... wrote: I really appreciate all the responses I've gotten. Thank you. I hadn't thought to just google "celiac kitchen" - too obvious, I guess! I was just looking at the "official" sites (celiac.org, nih, mayo, etc.). My kids are being tested this week (as are my two sisters and my mom) - the basic antibody tests plus the test for the genetic markers. If they don't have it, and it doesn't threaten my health to do so, I would prefer not to completely limit their in-house diet to gluten-free. All of your suggestions for labeling foods clearly, putting the gf foods on the top shelf in a shared pantry, getting a dust vac and separate colanders, etc, are fantastic. Thank you.

Does anyone have advice about a follow-up plan - that is, after diagnosis and starting the gf diet, what kind of follow-up plan should I expect (demand?) of my physician. I've read that I should have a bone density test. Anything else? I've already had a ton of blood work (including lots to do with liver function) and nothing's unusual except for the one thing that set me on the path of discovering I have celiac (very low B1 levels, which one doctor dismissed as lab error even though a basic google search linked low B1 to my one and only symptom!). I'm at Kaiser and I owe getting diagnosed in 7 months to our refusing to accept there wasn't an answer to why my B1 levels were low and to one nutritionist (who I insisted on seeing) who immediately thought of celiac. So I know how proactive I am going to have to be. Also, does anyone know of a live support group? I think it would help me sort through some of the emotions I'm having as I start on this gf path.

Being careful about my diet isn't completely new to me - I'm a "vegaquarian" (no chicken or meat) - but obviously going gf is much more difficult and, ultimately, more important to get completely right. I'm alternately ok and freaked out. Thanks again. Tristan **************Create a Home Theater Like the Pros. Watch the video on AOL Home. (http://home.aol.com/diy/home-improvement-eric-stromer?video=15?ncid=aolhom00030000000001)

[Guest guest]

My mother often goes to Kaiser at Homestead and Lawrence and then also in Santa Clara.Beaflatcat9@... wrote: Which Kaiser do you go to? H. In a message dated 3/26/08 2:23:29 PM, beagarth writes: Thus I am wondering

if you could tell me who your doctors are at Kaiser so we could start getting some results here for my mother--and my brother who also has celiac (he has Down's Syndrome--and is much better being on diet though of course he is unconvinced to the seriousness since he reflects all my mothers attitudes). **************Create a Home Theater Like the Pros. Watch the video on AOL Home. (http://home.aol.com/diy/home-improvement-eric-stromer?video=15?ncid=aolhom00030000000001)

[Guest guest]

Was still wondering what the name of your doc was at Kaiser that knows about B-1 deficiency with celiac. My mother is here in the South Bay near San . She goes to the old Santa Clara Kaiser and also the one on Homestead etc. However I am sure she could be flexible. If not that doc, then maybe he or she could recommend someone else?Beaflatcat9@... wrote: Which Kaiser do you go to? H. In a message dated 3/26/08 2:23:29 PM,

beagarth writes: Thus I am wondering if you could tell me who your doctors are at Kaiser so we could start getting some results here for my mother--and my brother who also has celiac (he has Down's Syndrome--and is much better being on diet though of course he is unconvinced to the seriousness since he reflects all my mothers attitudes). **************Create a Home Theater Like the Pros. Watch the video on AOL Home. (http://home.aol.com/diy/home-improvement-eric-stromer?video=15?ncid=aolhom00030000000001)

[Guest guest]

It was a nutrionist; I'll have to look up her name and get back to you. No one else I saw at Kaiser thought of the connection.

In a message dated 3/28/08 1:20:47 AM, beagarth@... writes:

Was still wondering what the name of your doc was at Kaiser that knows about B-1 deficiency with celiac. My mother is here in the South Bay near San . She goes to the old Santa Clara Kaiser and also the one on Homestead etc. However I am sure she could be flexible.

If not that doc, then maybe he or she could recommend someone else?

Bea

**************Create a Home Theater Like the Pros. Watch the video on AOL Home. (http://home.aol.com/diy/home-improvement-eric-stromer?video=15 & ncid=aolhom00030000000001)

[Guest guest]

Amazing -- though why am I not surprised? Please do get back to me with the name of the nutritionist when you can. I am so glad they at least have somebody there at Kaiser who doesn't have their head in the sand. I just hope she has the pull to influence the other doctors. At least she got you the B-1 shots--which one of my mother's doctors there recently told me wasn't even available.BeaTrVerb@... wrote: It was a nutrionist; I'll have to look up

her name and get back to you. No one else I saw at Kaiser thought of the connection. In a message dated 3/28/08 1:20:47 AM, beagarth writes: Was still wondering what the name of your doc was at Kaiser that knows about B-1 deficiency with celiac. My mother is here in the South Bay near San . She goes to the old Santa Clara Kaiser and also the one on Homestead etc. However I am sure she could be flexible. If not that doc, then maybe he or she could recommend someone else? Bea **************Create a Home Theater Like the Pros. Watch the

video on AOL Home. (http://home.aol.com/diy/home-improvement-eric-stromer?video=15 & ncid=aolhom00030000000001)