Jump to content

  • 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
      132,142
    • Most Online (within 30 mins)
      7,748
    Jeaneneve
    Newest Member
    Jeaneneve
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Headaches / Migraines and Hypoglycaemia

      By trents · Posted

      My migraines generally have their onset during the early morning hours as well. Presently, I am under siege with them, having headaches all but two days so far this month. I have looked at all the things reported to be common triggers (foods, sleep patterns, weather patterns, stress, etc.). Every time I think I start to see a pattern it proves not to pan out in the long run. I'm not sure it's any one thing but may, instead, be a combination of things that coalesce at certain times. It's very frustrating. The medication (sumatriptan or "Imatrix") is effective and is the only thing that will quell the pain. NSAIDs, Tylenol, even hydrocodone doesn't touch it. But they only give you 9 does of sumatriptan a month. And it doesn't help that medical science doesn't really know what causes migraines. They know some things about it but the root cause is still a mystery.
    • Scott Adams
      Tamale ingredients

      By Scott Adams · Posted

      These are labeled gluten-free: https://www.amazon.com/Corn-Husks-Tamales-Authentic-Flavorful/dp/B01MDSHUTM/
    • Wheatwacked
      GI DX celiac despite neg serology and no biopsy

      By Wheatwacked · Posted

      Just a gluten free diet is not enough.  Now you have to identify and replenish your malnutrition.  Celiac disease is co-morbid with malabsorption syndrome.  Low vitamin D, Low Thiamine caused Gastointeston Beriberi, low choline, low iodine are common the general population, and in newly diagnosed Celiacs in the western culture its is more likely.  It takes time to heal and you need to focus on vitamins and minerals.  Gluten free foods are not fortified like regular processed foods.  
    • Sarah Grace
      Headaches / Migraines and Hypoglycaemia

      By Sarah Grace · Posted

      Dear Kitty Since March I have been following your recommendations regarding vitamins to assist with various issues that I have been experiencing.  To recap, I am aged 68 and was late diagnosed with Celiac about 12 years ago.  I had been experiencing terrible early morning headaches which I had self diagnosed as hypoglycaemia.  I also mentioned that I had issues with insomnia, vertigo and brain fog.   It's now one year since I started on the Benfotiamine 600 mg/day.  I am still experiencing the hypoglycaemia and it's not really possible to say for sure whether the Benfotiamine is helpful.  In March this year, I added B-Complex Thiamine Hydrochloride and Magnesium L-Threonate on a daily basis, and I am now confident to report that the insomnia and vertigo and brain fog have all improved!!  So, very many thanks for your very helpful advice. I am now less confident that the early morning headaches are caused by hypoglycaemia, as even foods with a zero a GI rating (cheese, nuts, etc) can cause really server headaches, which sometimes require migraine medication in order to get rid off.  If you are able to suggest any other treatment I would definitely give it a try, as these headaches are a terrible burden.  Doctors in the UK have very limited knowledge concerning dietary issues, and I do not know how to get reliable advice from them. Best regards,
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.