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Alternative Treatments Complementary and alternative medicine; natural and holistic approaches

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  #1  
Old Tue Oct 29, 2013, 04:05 PM
Mseth Mseth is offline
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Location: New Delhi, India
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Information & link for Gluten Summit

I read in previous threads that some forum members have benefitted from being on a gluten free diet. In case anyone is interested here is a link to an online event "The Gluten Summit", which is a series of interviews with the world’s leading experts on gluten-related disorders, health and nutrition that will be broadcast online from November 11-17, 2013.
Event site: http://theglutensummit.com

My mother has tested negative for celiac, but she has symtoms of gluten sensitivity - weak digestion etc for the longest time. I have not yet been able to convince her to try a month of going gluten-free to see if there is any benefit. Wheat is pretty much her staple diet. Is there any other way of knowing if she has any adverse reaction to gluten?
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Mother age 79, dx MDS RCMD low risk del 20q April 2013, no response to EPO, Danazol. pRBC tx dependent - 2 units every 3-4 weeks, exjade Dec 2013 - Mar2014, restarted Dec 2014
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  #2  
Old Mon Nov 4, 2013, 09:31 AM
Marlene Marlene is offline
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Gluten Summit

Thanks for posting this. This looks to be a very informative summit. And it's free.
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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 January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #3  
Old Mon Nov 4, 2013, 06:22 PM
Whizbang Whizbang is offline
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Mseth,

It's not that hard to go Gluten free, you just need to buy her the alternative...

Rice flour tortilla's... Rice and beans... Rice Krispies... Gluten Free Granola mixes and cereals, Flavored oatmeal, Etc...

They even make gluten free Pizza (which generally does suck)...

Health is always more important than eating choices...
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Married, father of three daughters; now 46; diagnosed w/ Major form MDS 6/18/2013; had low counts across the board; Multiple chromosome abnormalities; Finished 2nd round Dacogen 9/13; SCT - Oct. 31, 2013; Sibling match 10/10 ; 5.5% blasts down to 3%, now 1% (post BMT)
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  #4  
Old Thu Nov 7, 2013, 10:18 AM
Mseth Mseth is offline
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Quote:
Originally Posted by Whizbang View Post

Health is always more important than eating choices...
Whizbang, Yes ofcourse health is more important. In India, wheat is staple food, almost every major meal of the day, but dropping it is not impossible when the incentive could be improved counts.

I have been following your progress on another thread and must say you are extremely brave. Best wishes to you, you are doing excellent, keep up the strength!!
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Mother age 79, dx MDS RCMD low risk del 20q April 2013, no response to EPO, Danazol. pRBC tx dependent - 2 units every 3-4 weeks, exjade Dec 2013 - Mar2014, restarted Dec 2014
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  #5  
Old Sun Nov 10, 2013, 05:49 PM
gramous gramous is offline
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hello,

I'm a 34 woman and eat gluten free since 6 years without problem. Your can find a lot of alternative food. my boyfriend eats also without gluten since 3 months and try benefices from this diet without bad effects for his mds but a lot of improvement for his intestinal status... so I think that gluten free diet is the diet fort omorrow :-)
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boyfriend with RARS-T dx 11/02//dx : hb 11,5; plt 870000, wh : 6500//Before fasting cure (13/04): hb: 8,9; plt 2200000; white:6000//After fasting cure (14/09): hb 12,5; platelets 400000, wh 3000.//Now (15/08) : hb : 11,plt : 650000, wh 3000// hydrea 1c/day and cardioaspirin, 1c/day,age: 56 y.
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  #6  
Old Mon Nov 11, 2013, 06:49 AM
Mseth Mseth is offline
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Reply to Gramous

Thanks for responding.

Your signature line shows increase in Hemo from 8,9 to 12. Is that the possible effect of gluten free diet? Is there some other treatment which helped?
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Mother age 79, dx MDS RCMD low risk del 20q April 2013, no response to EPO, Danazol. pRBC tx dependent - 2 units every 3-4 weeks, exjade Dec 2013 - Mar2014, restarted Dec 2014
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  #7  
Old Mon Nov 11, 2013, 09:53 AM
Whizbang Whizbang is offline
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Mseth,

For me, 1000mcg Folic acid daily, Stress B complex, Vitamin D3 (2500iu) in droplets every other day (for Platelets), and Gluten free diet helped me tremendously over a short period of time...

But you have to realize I am young (45) and completely healthy otherwise...

Code:
Component  Standard Range  6/14  6/19  7/18  7/30
RDW-CV     11.6-14.4 %     18.1  18.1  16.1  15.1
RDW-SD     35.1-43.9 fl    59.1  58.1  51.5  48.1
HGB        13.7-17.5 g/dl   8.0   9.1  11.0  11.0
HCT        40-51 %         23.3  26.0  31.7  32.4
PLT        150-400 K/ul      70    76    95    91
RBC        4.63-6.08 M/uL  2.57  2.91  3.56  3.64
WBC        4.2-9.1 k/ul     2.0   1.9   3.2   3.5
NEUT%      34-68 %           46    48    53    62
NEUT       1.8-9.0 K/uL     1.0   0.9   1.7   2.2
This was from diagnosis to before my first round of chemo dacogen...

Everyone is obviously different, because it worked for me doesn't necessarily mean it will work for your mom...

Best of luck to you and your mom, and may God bless you both...
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Married, father of three daughters; now 46; diagnosed w/ Major form MDS 6/18/2013; had low counts across the board; Multiple chromosome abnormalities; Finished 2nd round Dacogen 9/13; SCT - Oct. 31, 2013; Sibling match 10/10 ; 5.5% blasts down to 3%, now 1% (post BMT)
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  #8  
Old Tue Nov 12, 2013, 08:10 AM
Marlene Marlene is offline
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Webcasts are up for viewing

I was able to listen to a couple of these. Well worth the time. It's surprising how many things gluten intolerance/celiac disease impacts. Just because you don't have any digestive complaints does not mean you don't have problems with wheat or gluten. Many doctors wait until there's a solid pathology before they will diagnose a gluten/wheat issues but there's support to intervene early on to prevent problems.

It can take 2 -3 three months for the antibodies created to return to normal baseline levels after going gluten free.
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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 January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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