Home         Forums  

Go Back   Marrowforums > Treatments > Alternative Treatments
Register FAQ Search Today's Posts Mark Forums Read

Alternative Treatments Complementary and alternative medicine; natural and holistic approaches

Reply
 
Thread Tools Search this Thread
  #1  
Old Tue Oct 29, 2013, 04:05 PM
Mseth Mseth is offline
Member
 
Join Date: Sep 2013
Location: New Delhi, India
Posts: 186
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?
__________________
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
Reply With Quote
  #2  
Old Mon Nov 4, 2013, 09:31 AM
Marlene Marlene is offline
Member
 
Join Date: Oct 2006
Location: Springfield, VA
Posts: 1,412
Gluten Summit

Thanks for posting this. This looks to be a very informative summit. And it's free.
__________________
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.
Reply With Quote
  #3  
Old Mon Nov 4, 2013, 06:22 PM
Whizbang Whizbang is offline
Member
 
Join Date: Aug 2013
Location: Central NJ
Posts: 299
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...
__________________
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)
Reply With Quote
  #4  
Old Thu Nov 7, 2013, 10:18 AM
Mseth Mseth is offline
Member
 
Join Date: Sep 2013
Location: New Delhi, India
Posts: 186
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!!
__________________
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
Reply With Quote
  #5  
Old Sun Nov 10, 2013, 05:49 PM
gramous gramous is offline
Member
 
Join Date: Apr 2012
Location: belgium
Posts: 73
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 :-)
__________________
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.
Reply With Quote
  #6  
Old Mon Nov 11, 2013, 06:49 AM
Mseth Mseth is offline
Member
 
Join Date: Sep 2013
Location: New Delhi, India
Posts: 186
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?
__________________
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
Reply With Quote
  #7  
Old Mon Nov 11, 2013, 09:53 AM
Whizbang Whizbang is offline
Member
 
Join Date: Aug 2013
Location: Central NJ
Posts: 299
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...
__________________
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)
Reply With Quote
  #8  
Old Tue Nov 12, 2013, 08:10 AM
Marlene Marlene is offline
Member
 
Join Date: Oct 2006
Location: Springfield, VA
Posts: 1,412
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.
__________________
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.
Reply With Quote
Reply


Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump

Similar Threads
Thread Thread Starter Forum Replies Last Post
Insurance Information for each U.S. State Marrowforums Insurance, Finances, Disability, Veterans Benefits 0 Mon Aug 26, 2013 07:23 PM
Building Blocks of Hope: New Patient Information Handbook Marrowforums News and Events 2 Fri Apr 26, 2013 03:34 PM
Silicone Breast Implants link to MDS? Jill2008 MDS 7 Fri Aug 8, 2008 11:03 AM
NMDP Provides Transplant Information Marrowforums Transplants 1 Tue May 8, 2007 05:00 AM


All times are GMT -4. The time now is 03:24 AM.


Powered by vBulletin® Version 3.6.7
Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.
Forum sites may contain non-authoritative and unverified information.
Medical decisions should be made in consultation with qualified medical professionals.
Site contents exclusive of member posts Copyright © 2006-2020 Marrowforums.org