Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Can U A Bone Marrow Donor?

Candy

Recommended Posts

Candy Contributor
Candy
Posted

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


cyberprof Enthusiast
cyberprof
Posted
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.

Open Original Shared Link

Open Original Shared Link

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. Open Original Shared Link

There are good points either way here: https://www.celiac.com/index.php?showtopic=18783

~Laura

KimmyJ Rookie
KimmyJ
Posted

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.

cyberprof Enthusiast
cyberprof
Posted
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

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

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?"

JNBunnie1 Community Regular
JNBunnie1
Posted
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.

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


kenlove Rising Star
kenlove
Posted

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

Ken

JNBunnie1 Community Regular
JNBunnie1
Posted
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.

kenlove Rising Star
kenlove
Posted

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.
MySuicidalTurtle Enthusiast
MySuicidalTurtle
Posted

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!

  • 3 months later...
Candy Contributor
Candy
Posted
  • Author
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.

elonwy Enthusiast
elonwy
Posted

I donate blood all the time (as often as they'll let me). Celiac is definitely not a problem there.

kenlove Rising Star
kenlove
Posted

Nice to know I can still give blood. Not something I've done since diagnoses.

Thanks all

ken

  • 1 month later...
Lisa16 Collaborator
Lisa16
Posted

What about other organs in the case of death?

Does anybody know?

JNBunnie1 Community Regular
JNBunnie1
Posted
What about other organs in the case of death?

Does anybody know?

I'm an organ donor, it's on my license. as far as I know, all the major organs that can BE donated don't really have anything to do with the immune system, unless they wanted to donate my lymph nodes or marrow or intestines post-mortem or something..... I can't picture that. I would imagine aheart or lung would be fine. Who can we ask about this, though?

Lisa16 Collaborator
Lisa16
Posted

I took the "donor" classification off my license AD (after diagnosis). I feel really bad about it too. But it looks like I might have another autoimmune now too. Still...

Maybe this is a question for the celiac association or it might be worth an email to Dr. Green or another expert.

JNBunnie1 Community Regular
JNBunnie1
Posted
I took the "donor" classification off my license AD (after diagnosis). I feel really bad about it too. But it looks like I might have another autoimmune now too. Still...

Maybe this is a question for the celiac association or it might be worth an email to Dr. Green or another expert.

Good call.

Lisa16 Collaborator
Lisa16
Posted

I wrote the celiac sprue assn about it yesterday. Maybe we will get an answer.

  • 4 years later...
fishe23a Newbie
fishe23a
Posted

I am aware that this is an old thread, but it scared me into thinking I couldn't be a bone marrow donor! So I updated my health information with the official National Marrow Donor Program in the US stating that I had been diagnosed with celiac disease via antibody testing and small intestine biopsy and that I assumed that made me inelegible. This is a direct copy-paste of the answer that I received, with my name removed:

Dear --------,

Thank you for informing us about the changes to your health. At this time, based on your medical condition and the National Marrow Donor Program® (NMDP) medical guidelines, your medical condition is acceptable and you are still able to remain on the Be The Match®Registry. If you are ever contacted as a potential match for a patient, we will reevaluate your medical status to donate marrow (no PBSC donation).

We are grateful for your generous commitment to patients in need and hope that you will stay engaged with us in a number of ways:

  • Keep us updated so that we can find you quickly if you are a potential match. You can change your information through theOpen Original Shared Link on the NMDP web site Open Original Shared Link or call us at 1 (800) 627-7692, 8:00 a.m. to 6:00 p.m. (CST).
  • Contribute financially to help a patient. Your generous tax-deductible contribution to Be The Match FoundationSM will help add more members to the registry, and we depend on your generosity giving more patients hope for a cure.
  • Discuss becoming a member on the registry with friends, family, coworkers and people in your community. They can join online at Open Original Shared Link

We look forward to your continued support and participation as we work together to save lives.

Sincerely,

Denise Krueger

Lead, Public Response, Member Services

3001 Broadway Street N. E. Suite 100, Minneapolis, MN 55413-1753

Phone: (612) 884-8734 Toll Free: (800) 627-7692 Ext 8434 Fax: (612) 362-3442

  • 3 years later...
GraemeH Newbie
GraemeH
Posted

Another reply to an old thread. We have a family friend whose son (aged 4) is struggling with leukemia. I went through the initial process (online screening question/answer form) of donating bone marrow, but was immediately rejected by the automatic screening due to my Celiac Disease. 

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      130,716
    • Most Online (within 30 mins)
      7,748
    tomwille
    Newest Member
    tomwille
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      New to gluten-free

      By trents · Posted

      Just so you'll know, once you have been gluten-free for any length of time, it will invalidate testing for celiac disease.
    • QueenBorg
      New to gluten-free

      By QueenBorg · Posted

      Yes. I have not been tested for celiac. It took forever to get diagnosed with Fibromyalgia. lol. I have an appointment with my regular GP later this month and will convey my findings on improved symptoms and see what his thoughts are. Thank you. 
    • knitty kitty
      Refractory celiac disease

      By knitty kitty · Posted

      @Grahamsnaturalworld, It's never too late.   Have you been checked for Small Intestinal Bacterial Overgrowth?  SIBO can cause ongoing symptoms.  Mast Cell Activation Syndrome (MCAS) and Histamine Intolerance (HIT) can also be the cause of ongoing symptoms.  The AIP diet can help with these by starving out SIBO bacteria and calming the immune system. Do you include dairy in your diet?  Casein in dairy can cause an autoimmune response the same as to gluten.  Have you been checked for lactose intolerance?  Some people lose the ability to produce the enzyme, lactase, needed to digest lactose, the sugar in dairy because the villi where the lactase enzyme is made are damaged.  AIP diet excludes dairy. Do you include grains in your diet?  Gluten free alternative grains and ancient grains can be inflammatory and cause symptoms.  Some people with Celiac react to corn and oats.  The AIP diet excludes all grains.  Lectins in grains can be inflammatory and cause symptoms. Do you eat nightshades (tomatoes, potatoes, peppers, and eggplant).  This family of plants produce glycoalkaloids, chemicals that promote Leaky Gut Syndrome.  The AIP diet excludes nightshades.   Are you on any medications?  Some medications can cause gastrointestinal symptoms.  Do you take any supplements?  Some herbal teas and supplements can cause digestive symptoms.  Medications for diabetes, antidepressants, and other pharmaceuticals can cause digestive symptoms as side effects. Have you been checked for nutritional deficiencies?  Malabsorption of essential nutrients can occur with continued symptoms.  Deficiencies in Niacin, Thiamine, and other B vitamins can cause digestive symptoms.  Gastrointestinal Beriberi and Pellagra are often overlooked by doctors because they are not familiar with nutritional deficiency disease symptoms.  Nutritional deficiencies can worsen over time as stores inside the body are depleted.   Have your doctors checked for all these?   I had a horrible time getting my symptoms under control.  I had to answer all these questions myself.  Yes, it's frustrating and exasperating because doctors don't have to live with these symptoms everyday. Interesting reading: AGA Clinical Practice Update on Management of Refractory Celiac Disease: Expert Review https://pubmed.ncbi.nlm.nih.gov/36137844/
    • Grahamsnaturalworld
      Refractory celiac disease

      By Grahamsnaturalworld · Posted

      Ok, thanks for the advice, the only advice I've had that's made sense after 21years since my slight symptoms all my life turned into nasty symptoms 21 yrs ago and around 50 gp's and specialists all chasing the symptoms and not looking for the cause, after 9 years of misery I discovered my symptoms matched celiac disease and a blood test proved anti bodies to gliadin but it was too late it has changed into r.c.d. thanks again.
    • trents
      New to gluten-free

      By trents · Posted

      Welcome to the forum, @QueenBorg! Just for the sake of clarification, your desire to avoid gluten is connected only with your dx of fibromyalgia and not celiac disease, correct?
×
×
  • Create New...