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Can U A Bone Marrow Donor?


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19 replies to this topic

#1 Candy

 
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Posted 25 May 2008 - 12:22 PM

Coeliacs,tend to have weak bones even when they adhere to a gluten-free diet,and my whole system seems to be off-keel from what it normally would be , so should I cancel my agreement to be a bone marrow donor? I possibly think so. Even following a gluten-free diet ,I always seem weak and nutrient deficient ,but I just keep filling up on the proper foods and supplements. Besides ,no one has matched my marrow in FOUR YEARS , so I guess I'm rare and most afflicted people don't need my marrow any way. Does anyone know know the answer to this for sure?? I asked the Red Cross people ,but most people who don't specialize in Coeliac Disease,know absolutely NUTHIN' about it,so they didn't seem to know whether or not it was plausible for breakBone Coeliacs to be bone marrow donors. Years ago when I signed up to be a donor,I wasn't aware that I had Coeliac,and it doesn't show up on any regular medical tests,only if I tell someone-so it's rather hidden.


(* most don't know NUTHIN' about it)-most people don't know all about something unless they have it and study it for themselves,so many people don't know in detail about Coeliac.
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I have DNA ancestry in NW.EUROPE,where CELIAC'S known to be common.

DEC. '05 TESTED POSITIVE for the Celiac GENES HLA-DQ2 , and DQ3 SUBTYPE DQ8
Celiac Negative Endoscopy-Aug.'08 - Diagnosed with Hernia and GERD(Gastric Esophageal Reflux Disease),and prescribed Acid Reducing Medication. I hadn't eaten WHEAT for a year prior to the Endoscopy-maybe that's why result was Negative. I need TTG test to determine Active Celiac Status/

Disgnosed with Sjogren's 9/19/2008- Internist referred me to Eye Doctor and Rheumatologist.

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#2 cyberprof

 
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Posted 25 May 2008 - 02:02 PM

Coeliacs,tend to have weak bones even when they adhere to a gluten-free diet,and my whole system seems to be off-keel from what it normally would be , so should I cancel my agreement to be a bone marrow donor? I possibly think so. Even following a gluten-free diet ,I always seem weak and nutrient deficient ,but I just keep filling up on the proper foods and supplements. Besides ,no one has matched my marrow in FOUR YEARS , so I guess I'm rare and most afflicted people don't need my marrow any way. Does anyone know know the answer to this for sure?? I asked the Red Cross people ,but most people who don't specialize in Coeliac Disease,know absolutely NUTHIN' about it,so they didn't seem to know whether or not it was plausible for breakBone Coeliacs to be bone marrow donors. Years ago when I signed up to be a donor,I wasn't aware that I had Coeliac,and it doesn't show up on any regular medical tests,only if I tell someone-so it's rather hidden.


(* most don't know NUTHIN' about it)-most people don't know all about something unless they have it and study it for themselves,so many people don't know in detail about Coeliac.


I believe that the answer is "NO". There is a documented case of someone getting celiac from a donor, although the donor was his sister, so the donee may have gotten celiac anyway at some point.

http://www.nature.co...s/1700926a.html

http://www.springerl...66k2ml80365002/

Here's the link to the National Bone Marrow Registry - it says "no" to anyone with an autoimmune disease but doesn't list celiac specifically, but you could call them. Certainly, if you were ever called upon to donate, you would want to tell them before the transplant. http://www.marrow.or...html#Autoimmune

There are good points either way here: http://www.glutenfre...showtopic=18783

~Laura
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Diagnosed by biopsy 2/12/07. Negative blood tests. Gluten-free (except for accidents) since 2/15/07. DQ2.5 (HLA DQA1*05:DQB1*0201)

Son, age 18, previously delayed growth 3rd percentile weight, 25th percentile height (5'3" at age 15). Negative blood work. Endoscopy declined. Enterolab positive 3/12/08. Gene results: HLA-DQB1 Molecular analysis, Allele 1 0201 HLA-DQB1 Molecular analysis, Allele 2 0503 Serologic equivalent: HLA-DQ 2,1(Subtype 2,5) Went gluten-free, casein-free 3/15/08. Now 6'2" (Over six feet!) and doing great.

"Great difficulties may be surmounted by patience and perseverance." Abigail Adams (1744-1818) 2nd First Lady of the United States

#3 KimmyJ

 
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Posted 25 May 2008 - 02:29 PM

I have no answer for you, but I just wanted to say thank you for your willingness t be a donor. My mother died last November of CLL, and was waiting at the time to get well enough to have a bone marrow transplant, had a donor and everything, but her lungs were in such bad shape that she never was considered healthy enough to go through with it.
Secondly, I would definitely tell the registry about anything health-wise that would impact your ability to donate because it is extremely stressful for the patient and the family to wait for a match, and that would be devastating for someone who thought they had a match, only to find out that you couldn't actually donate. Give the registry a call would be my advice.
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#4 cyberprof

 
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Posted 25 May 2008 - 02:47 PM

I have no answer for you, but I just wanted to say thank you for your willingness t be a donor. My mother died last November of CLL, and was waiting at the time to get well enough to have a bone marrow transplant, had a donor and everything, but her lungs were in such bad shape that she never was considered healthy enough to go through with it.
Secondly, I would definitely tell the registry about anything health-wise that would impact your ability to donate because it is extremely stressful for the patient and the family to wait for a match, and that would be devastating for someone who thought they had a match, only to find out that you couldn't actually donate. Give the registry a call would be my advice.


I signed up years ago to be a donor and was very unhappy to read that it might be a problem. I haven't taken myself off the list yet but next time they send me an update form I'm going to fill it out and see what they say.

~Laura
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Diagnosed by biopsy 2/12/07. Negative blood tests. Gluten-free (except for accidents) since 2/15/07. DQ2.5 (HLA DQA1*05:DQB1*0201)

Son, age 18, previously delayed growth 3rd percentile weight, 25th percentile height (5'3" at age 15). Negative blood work. Endoscopy declined. Enterolab positive 3/12/08. Gene results: HLA-DQB1 Molecular analysis, Allele 1 0201 HLA-DQB1 Molecular analysis, Allele 2 0503 Serologic equivalent: HLA-DQ 2,1(Subtype 2,5) Went gluten-free, casein-free 3/15/08. Now 6'2" (Over six feet!) and doing great.

"Great difficulties may be surmounted by patience and perseverance." Abigail Adams (1744-1818) 2nd First Lady of the United States

#5 Fiddle-Faddle

 
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Posted 25 May 2008 - 03:16 PM

That doesn't make sense--so many people DIE waiting for bone marrow donors who match. It's such a long shot to find even one who matches. I sure as heck wouldn't want MY child to die if the alternative would be to have a bone marrow donation from someone with celiac!!!!

I mean, think about it--wouldn't any mother say, "Yes, we'll keep him gluten-free forever--just please save his life?"
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#6 JNBunnie1

 
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Posted 26 May 2008 - 07:36 AM

That doesn't make sense--so many people DIE waiting for bone marrow donors who match. It's such a long shot to find even one who matches. I sure as heck wouldn't want MY child to die if the alternative would be to have a bone marrow donation from someone with celiac!!!!

I mean, think about it--wouldn't any mother say, "Yes, we'll keep him gluten-free forever--just please save his life?"



I personally agree with this. However, in such a litigious, backbiting society, a lot of medical establishments would not be willing to open themselves to lawsuit in this way.
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If you're going through hell, keep going. ~Winston Churchill

#7 Fiddle-Faddle

 
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Posted 26 May 2008 - 08:38 AM

I registered to be a bone marrow donor 2 years ago--I guess this explains why I haven't been called?
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#8 kenlove

 
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Posted 26 May 2008 - 08:49 AM

What about donating blood? I was told no here in Hawaii but wondered if it was allowed elsewhere.
Ken
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"Ryo tatereba mi ga tatanu"

If we try to serve both sides, we cannot stand our own ground.

Japanese proverb

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#9 JNBunnie1

 
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Posted 27 May 2008 - 04:03 AM

What about donating blood? I was told no here in Hawaii but wondered if it was allowed elsewhere.
Ken


Really? I don't see, scientifically, how celiac blood could be harmful to anyone. Bone marrow is creating a whole new immune system, blood can't do that. I don't have an official diagnosis, so I never thought to ask. Maybe I should find out, I have been donating blood and probably should have found out first.
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If you're going through hell, keep going. ~Winston Churchill

#10 kenlove

 
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Posted 27 May 2008 - 07:20 AM

I know nothing about it but the last time I asked they were treating me for a number of other things before they found it was celiac.
I might have been told no for other reasons than celiac but I was curious since I used to be a donor.


Really? I don't see, scientifically, how celiac blood could be harmful to anyone. Bone marrow is creating a whole new immune system, blood can't do that. I don't have an official diagnosis, so I never thought to ask. Maybe I should find out, I have been donating blood and probably should have found out first.


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"Ryo tatereba mi ga tatanu"

If we try to serve both sides, we cannot stand our own ground.

Japanese proverb

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#11 MySuicidalTurtle

 
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Posted 27 May 2008 - 07:27 AM

Blood is fine but marrow is a no (I was also very upset about this). It makes sense since Celliacs is an auto-immune disorder but in family situations I think it is okay but to the general population we are out. Further research in the future might change this, though, who knows!
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#12 Candy

 
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Posted 20 September 2008 - 08:22 AM

I registered to be a bone marrow donor 2 years ago--I guess this explains why I haven't been called?



I haven't been called either,but it may be because I'm so rare that no one needs me, luckily. .That's what I figured. Me and you must be mighty rare Fiddle Faddle or maybe people with our backgrouns aren't sick, so they don't need donors and that too is very good , wouldn't you say?

At the time I signed up for bone marrow donation along with donating blood I didn't know I had anything to be sure.I knew of no autoimmune disease to tell them about . I still haven't officially been diagnosed with Celiac Disease-I need a ttg test,since an endoscopy came back NEGATIVE -due to me not eating wheat for a year).

I did just get diagnosed with Sjogren's Syndrome and that is autoimmune.Doctor called just this Friday afternoon 9/19/2008

The Bone MarrowDonor Page doesn't say that we are foul ,therefore we can't donate -it says people with debilitaing conditions affecting themselves WOULD NOT be ABLE to donate-due to their own medical problems,and I agree. (and celiac +other autoimmune diseases MAY be catching ,via the bone marrow,therefore I would not volunteer to give anyone my personal affected bone marrow anyway.
  • 0
I have DNA ancestry in NW.EUROPE,where CELIAC'S known to be common.

DEC. '05 TESTED POSITIVE for the Celiac GENES HLA-DQ2 , and DQ3 SUBTYPE DQ8
Celiac Negative Endoscopy-Aug.'08 - Diagnosed with Hernia and GERD(Gastric Esophageal Reflux Disease),and prescribed Acid Reducing Medication. I hadn't eaten WHEAT for a year prior to the Endoscopy-maybe that's why result was Negative. I need TTG test to determine Active Celiac Status/

Disgnosed with Sjogren's 9/19/2008- Internist referred me to Eye Doctor and Rheumatologist.

#13 elonwy

 
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Posted 20 September 2008 - 11:08 AM

I donate blood all the time (as often as they'll let me). Celiac is definitely not a problem there.
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Positive Bloodwork 7/8/05
Inconclusive Biopsy 7/20/05
gluten-free since 7/23/05
Never felt better.


"So here's us, on the raggedy edge, come a day when there won't be room for naughty men like us to slip about at all. - Malcolm Reynolds"

#14 kenlove

 
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Posted 20 September 2008 - 10:30 PM

Nice to know I can still give blood. Not something I've done since diagnoses.
Thanks all
ken
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"Ryo tatereba mi ga tatanu"

If we try to serve both sides, we cannot stand our own ground.

Japanese proverb

Celiac.com - Celiac Disease Board Moderator

#15 Lisa16

 
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Posted 21 October 2008 - 01:15 PM

What about other organs in the case of death?

Does anybody know?
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