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  #1  
Old Mon Mar 7, 2016, 02:10 PM
Carole L Carole L is offline
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Fermented foods post transplant

Hi All,

Am 5 months post double cord transplant for MDS. Apart from mild GVHD am doing great.

Have tried to get an answer from dietician re fermented foods but is proving to be a bit of a project.

Does anyone know if it is ok to eat miso, tempeh, kombucha post transplant. I cannot see an exclusions on any site re these foods but just don't want to take any risks at this point.

Thanks
Carole
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  #2  
Old Mon Mar 7, 2016, 02:43 PM
bailie bailie is offline
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Carole, congratulations on your success thus far. For me, I stuck almost entirely with main stream processed foods. My digestive system hasn't been better than now in the last 30 years.
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age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.
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Old Mon Mar 7, 2016, 08:50 PM
PaulS PaulS is offline
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Hi Carole - glad you are doing so well and able to ask relatively mundane questions about eating tempeh!

I'm six months out and have started eating out carefully at restaurants and cooking meat to medium instead of charred - Otherwise very careful - Im told there is a risk to everything --- I haven't asked my Dr. about fermented food - but I have been told its OK to take probiotics - and I have eaten kim chi without getting sick -But I have an appointment tomorrow and will I'll ask my doctor - I'd think fermented food have good bacteria, not deadly - but I really don't know and don't think about taking my advice. Why is it hard getting an answer? Are you eating the fermented food raw (cold kimchi) or cooked (tempeh) -

I think we have to balance the risks we take - Springsteen concert - worth the risk - tempeh - not so sure - kimchi - maybe a little -

Keep doing well!!

Best,
Paul
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Lower risk MDS diagnosed 2012. Recurring skin nodules treated with prednisone, otherwise watch and wait. HG dropped from 11.5 to 8.7. Kept going down to 5. Vidaza didn't work. BMT from MUD on September 10 2015
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  #4  
Old Tue Mar 8, 2016, 09:36 AM
Marlene Marlene is offline
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Join Date: Oct 2006
Location: Springfield, VA
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Hi Carole,

Even though John did not have a transplant with his high dose cytoxan, he had a very low ANC for a good 3 years. We ventured into fermented foods too. After all those antibiotics/virals/fungals we knew we needed to restore balance. The Exjade was hard on him too.

Early on, we used probiotics and yogurt. Then we ventured into miso, lactofermented kraut, pickles and kim chi. I add miso to soups. As long as you heat to 140 degrees, you pretty much kill any bacteria. But if you overheat it, you lose the benefits.

Any pink molds found on top or on the lids of fermented products means they are bad. In the 10+ years of eating this stuff, we have never come across any.

As Paul stated, there's a balance. We also ate fresh raw produce. I would wash lettuce and greens in vinegar and water. And all fruit, even bananas were washed. I figured if they were serving John apples in the hospital then I could do the same at home. I stayed away from pre-washed packaged stuff though. They seem to have more problems with contamination.

Eating out seems to carry the biggest risk. You just don't know how they handle the food.

When we first started eating fermented foods, I would test it out first. If I didn't get sick, I felt more confident that the product was fine and that John wouldn't have a problem with it either. Whether or not that was a good strategy we'll never know for sure.

If you choose to try some of these, it's best to start slow, with a small amount and don't overdo it. But if you're not confident with doing so, ask about probiotics as a first step. They should have an answer on that.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K.
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