Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Can U A Bone Marrow Donor?
1 1

21 posts in this topic

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.

0

Share this post


Link to post
Share on other sites


Ads by Google:
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.com/bmt/journal/v20/n7/abs/1700926a.html

http://www.springerlink.com/content/y266k2ml80365002/

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.org/HELP/Join_the_Donor_...html#Autoimmune

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

~Laura

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites
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

0

Share this post


Link to post
Share on other sites

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?"

0

Share this post


Link to post
Share on other sites




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.

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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

Ken

0

Share this post


Link to post
Share on other sites
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.

0

Share this post


Link to post
Share on other sites

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.
0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites
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

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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

Thanks all

ken

0

Share this post


Link to post
Share on other sites

What about other organs in the case of death?

Does anybody know?

0

Share this post


Link to post
Share on other sites
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?

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites
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.

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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 theUpdate Your Information form on the NMDP web site www.bethematch.org 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 www.bethematch.org/join

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

0

Share this post


Link to post
Share on other sites

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. 

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
1 1

  • Forum Statistics

    • Total Topics
      104,092
    • Total Posts
      920,314
  • Topics

  • Posts

    • WOW.  That looks eerily familiar.  Last December the temporary provider here at my local (rural) clinic gave me doxycycline to experiment with, but it was a mere ten milligrams.  Lol, no wonder it didn't help!  I'm glad you're feeling better.
    • I got cross contaminated some time ago & the rash came back pretty badly. I've attached a photo taken on June 11th of my back. It was also in my scalp, around my neck, on my front, shoulders, inner wrists and more.   Tonight I am not itching at all! I haven't itched all day long!!!! I can't take Dapsone because I'm allergic to sulfa drugs & Dapsone is a sulfa drug. Obviously that means I also can't take any of the other sulfa drugs that are used to treat dh after Dapsone is not an option. After those comes tetracycline. I really needed some relief! I began researching the dosage & particulars on tetracycline for dh. Extensive & exhaustive research did not pan out. The best I could find was treating Bullous phemphigoid. That said something like 500mg of tetracycline 4 times per day and about an equal amount of niacinimide. I really didn't want to take that much medication and in such strong doses. So my doctor (my PC doc) & I began experimenting. We tried Doxycycline 100mg twice a day. It seemed to be helping some but it just wasn't enough. Then we upped it to 200mg Doxycycline twice per day. It has taken about 5 days of that & I sit here not itching all day for the first time in a long, long time! This may not work for everyone. I did want to post it though as it is, at present, working for me. I am not thrilled at taking it but I have toughed this rash out before for years with no meds and I just couldn't do it again.
    • I laughed out loud at the 'little notebook' comment!😂 It has been interesting to see how much progress has actually been made over the past 10 years that there is even a notebook to be offered or a restaurant to eat in that will accommodate our 'allergy'. 10 years ago I feared that I would never eat in a restaurant again.  But the notebook comment is spot on.  Hopefully within the next 10 years restaurants will evolve enough to offer us a menu that clearly lists the delicious and extensive offerings that they have lovingly prepared just for us...and not just an ingredient list with nutritional values that take longer to read than War and Peace.   I am grateful that there are places to go that at least make the effort.  Who knows?  Eventually there may be restaurants which will have to offer menus with GLUTEN options available!
    • Thanks for posting this Adrien, it's a great list and I and others will appreciate the effort and the thought behind it. I loved my time in Malaysia and I'm glad I sampled all the food I could whilst I was still on an unrestricted diet. The good thing is that, like you say, some of the nice Malay foods are still ok. As a backpacker I survived on a lot of nasi goreng and laksa, nice to think if I return there I could still do the same Terima kasih!
    • I have posted on here before. DQ2, brother with celiac, DGP iGA was the only mildly elevated test. Was gluten-free so did 6 week challenge last winter. Negative biopsy. I am gluten-free now but do go out to eat. Prior to the challenge my health was good. Since then I have: Chest pain, pain between shoulder blades, periods of shortness of breath, heart palpitations, one instance of a heart arrythmia episode, neck is tender to touch on one side (they kept saying sinuses or TMJ which my dentist vetoed) ear ache, bowels never sink. Numbness and tingling. Blood pressure variations. Could be doing chores and feel dizzy and it might be 84/52.  not super low, but not typical for me if I'm running around the house.While other days I am mildly hypertensive. Recently lost 5 lbs in 8 days without trying. Recently electrolytes were low, alkaline phosphatese was low. Ferritin started dropping so started liquid iron 2-3 times per day 4 months ago. Primary watching that, I am not anemic but we are nowhere near iron overload either.  GI doc was a dick. Did not even know DGP replaced older tests and he was very condescending When I begged him for help recently and told me to get a second opinion which is exactly what I plan on doing.  I now have pain in my upper GI area. It is tender to touch. I had my gallbladder out in 97 along with a stone and infection in my bile duct. It hurts in this area. Pancreatic enzymes look fine, liver enzymes fine. Pancreatic ultrasound fine. I will now be doing a EUS Soon to look at bile duct, pancreas and liver.   so a typical day for me is that I might feel fine for a while and then suddenly feel like I'm going to pass out. really dizzy, numbness in odd places, like my body has been hijacked. I will typically eat a bunch of food something high protein and in about an hour or so I start to feel better. However, then my upper stomach starts to hurt in place of the passing out feeling. blood sugars are also normal. After getting the " it must be panic attacks" and condescending looks a million times my primary finally ordered an ultrasound of my sore neck and there is an abnormality in my thyroid which she says looks like possibly Hashti's. Except for one time, all my serum TSH tests were normal. We have more blood work on Monday. As I have not put on any weight and there are other symptoms that are closer to Graves.  Has anyone else had any thyroid issues that followed doing a gluten challenge?  where is your stomach pain? Do you have it above or below your belly button? Mine feels like it's in the pancreas area, like 2-3 inches above the belly button and when I push on it it's tender, but not all the time. sometimes i feel it in my back. 
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

    There are no registered users currently online

  • Member Statistics

    • Total Members
      61,123
    • Most Online
      1,763

    Newest Member
    ForeverYoung&GlutenFree
    Joined