Webcast on alternative treatment of MDS/AA

[Lbrown]

Very interesting about the vitamin K Lulu. I suspect undiagnosed celiac and malabsorption problems in my case. I've been transfusion dependent for 4 years now and have had at least 200 units of packed red cells. Since going strictly gluten free in May of this year, my rash went away and I feel stronger. I can tell I *am* stronger because I can ride my horse better. For 10+ weeks my HGB was doing better as well. I think I got glutened by mistake around Aug 30, my next test was worse. I am hanging in there and staying on the diet, in spite of what my drs think.

It's mind boggling to think gut problems might be causing a lot of these blood disorders.

Deb

[Glenda H]

I have been looking at a few of these presentations. There was another one on Nutrition I looked at as well as the main one in this thread. I may have a look at some more which are archived.

[Lulu]

It's mind boggling to think gut problems might be causing a lot of these blood disorders

Yes, and I think it is absolutely criminal that the medical profession (mostly) dismiss the link as insignificant. I had one consultant telling me I was clutching at straws and that he would not test for "serum rhubarb" (ie whatever he thought was irrelevant). Fortunately they listen to me a bit more now, but some take the "maybe you don't really have MDS" line, which is about as logical as the old witch trials whereby if you float you are a witch and if you drown you are innocent!

Lbrown, good to hear your diet is helping. I have had several coeliac tests and they all come out negative, but I think I have an issue with Fodmaps (which includes wheat) http://en.wikipedia.org/wiki/FODMAP
http://www.ncbi.nlm.nih.gov/myncbi/b...ion=descending

Good to see they have put the presentations online now, I look forward to catching up!

[Mseth]

Originally Posted by Lulu

Hi Mseth, Marlene

Yes I was reliant on transfusions for a year or so, Hg was down to 6.7 when diagnosed. I'd say my MDS is mild as in it used to go down 1-2 points a month rather than each week, and cytogenetics are normal.

I started v cautiously with the Thorne K2 drops and am now on these at 45mg daily http://www.amazon.com/Advanced-Ortho.../dp/B00457KVBM
I think it took about 4 weeks for my blood count to improve slightly, and I relapsed when I stopped taking it so I must have a higher than normal need for it.

I also take vit D3 in the winter (3000iu spray), and 1mg B12 (methylcobalamin form), emulsified vitamin A (in small doses), shark liver oil, probiotics, magnesium, and wheatgrass. Diet-wise, I avoid gluten, cows milk and beans as much as possible, as these aggravate. I used to be almost vegan, but have found that I do better on a more paleo-style diet.

Mseth - from what I understand about gallbladder removal this can cause severe Bile Acid Malabsorption, so there may well be a link here.

Good luck everyone! x

Hi Lulu, i lookes up Bile Acid Malabsorption and you are right, Cholecystectomy is listed as a type 3 for Bile Acid Malabsorption though my mother does not have the symptom of chronic diarrhea. Are there tests and treatments for this specific condition?
Does this condition affect Vit K2 absorption or other nutrients too?
Any specific reason for moving from Thorne liquid K2 to the capsule form? Thanks in advance for your answers.

[Lulu]

Hi Mseth, the test for bile acid malabsorption is called a Sehcat test. http://en.wikipedia.org/wiki/SeHCAT
I have heard it is not available in the US, I don't know if this is still the case.

BAM particularly affects the fat soluble vitamins (A,D,E,K) and possibly others but K is apparently particularly vulnerable as it is usually not as abundant in the diet.

The treatment for BAM is bile acid sequestrants, drugs that bind to the bile acids and slow digestive transit. This can stop the diarhoea but does not treat the vitamin deficiency as it binds the vitamins also. I have since read that Psyllium and slippery elm do a similar job. Nobody seems to know what the root cause is, but my problems started after a stomach bug about 20 years ago.

I moved from the Thorne drops to the capsules as it was cheaper!

[Mseth]

Originally Posted by Lulu

Hi Mseth, the test for bile acid malabsorption is called a Sehcat test. http://en.wikipedia.org/wiki/SeHCAT
I have heard it is not available in the US, I don't know if this is still the case.

BAM particularly affects the fat soluble vitamins (A,D,E,K) and possibly others but K is apparently particularly vulnerable as it is usually not as abundant in the diet.

The treatment for BAM is bile acid sequestrants, drugs that bind to the bile acids and slow digestive transit. This can stop the diarhoea but does not treat the vitamin deficiency as it binds the vitamins also. I have since read that Psyllium and slippery elm do a similar job. Nobody seems to know what the root cause is, but my problems started after a stomach bug about 20 years ago.

I moved from the Thorne drops to the capsules as it was cheaper!

Thanks Lulu for the information. Dont know if this test will be available in India.
Moving to capsules is definitely a good decision, we pay customs duty to import it into India, over and above the online cost of $62!! I am just hoping and keeping fingers crossed that it can help raise her Hb a liitle bit at least. Currently Hb drops by 2 - 2.5 points in 4 weeks, even a longer transfusion interval will be such a relief.
Thanks for all your help!!

[curlygirl]

Lulu, by pure coincidence I was Science Daily today and came across this article on IBS, interleuken 10, and Lymphoma today and thought of your posts on this thread.
http://www.sciencedaily.com/releases...1002103313.htm

"Genetic Anti-Inflammatory Defect Predisposes Children to Lymphoma"

[Chirley]

I'm sorry if this isn't relevant because I'll admit I haven't read the posts thoroughly or the articles but the main excretion pathway for copper is in bile. (In my case urine, but what the heck, I'm abnormal, what can I say!).

[Lbrown]

Chirley - I think we're all abnormal around here!

Thanks for posting about FODMAPs. I think my husband was talking about that just the other day, except he wasn't making a lot of sense. I will look into it more.

BTW, copper deficiency is mentioned in this article from Blood: http://bloodjournal.hematologylibrar...b8e8572c#aff-1

Also, I have read that the celiac tests aren't necessarily all that accurate. I refused the test due to having to go back to eating gluten again - no way. I was not willing to make myself sicker than I already am in order to test positive for celiac.

I got some gluten by accident on Aug 30th and it's taken 4 - 5 weeks for my counts to improve. This fits with my observations in April when I binged on pizza for a week, and had a huge drop that took about a month to recover from. In Sept I had a large drop in HGB, then an average one, now a less than average one. I had just over 10 weeks this summer with less than average drops as well, after going strictly gluten free on May 25. The only supplement I take is B12

Deb