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 We Donate Bone Marrow?


Laura

Recommended Posts

Laura Apprentice

I'm wondering if celiacs can register as bone marrow or stem cell donors? The websites I've found with general guidelines for who can donate say that people with autoimmune conditions generally can't, but then some of them exempt certain ones. But never mention celiac.

A friend's brother-in-law just died of leukemia and I'd really like to register as a donor in his honor, if I can.


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



Celiac.com Sponsor (A8-M):



trents Grand Master
I'm wondering if celiacs can register as bone marrow or stem cell donors? The websites I've found with general guidelines for who can donate say that people with autoimmune conditions generally can't, but then some of them exempt certain ones. But never mention celiac.

A friend's brother-in-law just died of leukemia and I'd really like to register as a donor in his honor, if I can.

Excellent question! I am in the bone marrow doner registry myself but that was before I was diagnosed as a Celiac. I'm sure, however, if you were called on to donate marrow, they would do another more detailed screening and at that time you could raise the question again. With the amount of attention Celiac disease is now getting in the medical/scientific community I'm sure they will be dealing with that issue soon if they haven't already.

Steve

jams Explorer

I was told that I couldn't donate blood. Is that true? I haven't because I was told that. It was by one of the people that works at the local donation site. I didn't call the HQ or anything because I know her through school and trust her. Now, talking about bone marrow, maybe I can do blood???

Smunkeemom Enthusiast

I can't donate anything because of severe anemia, I talked to the guy at the red cross though, and he said that celiacs can donate blood, if they aren't on any medications that are on the "forbidden list".

My husband can't donate because of the meds, he is on for crohns for example.

As far as the bone marrow thing, I don't know, but I think we can. I was going to check it out.

tarnalberry Community Regular

We can donate blood, and while I don't specifically know about marrow, I suspect we can donate that as well. The difference between celiac and pretty much all the other autoimmune diseases is that the autoimmune trigger (gluten) is known and external to the body. There may be something unique about marrow I'm unaware of, however, that makes this difference a moot point.

kabowman Explorer

I think in Canada you can't donate blood with celiac disease but in US you can.

eKatherine Apprentice

Keep in mind that donating marrow is not a simple procedure, it is a serious operation. People have died. If your health is fragile you shouldn't even consider it.

I wouldn't think about donating unless a blood relative of mine was in need.


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



Celiac.com Sponsor (A8-M):



penguin Community Regular

Hmm...this leads me to believe you probably can't:

Open Original Shared Link

It is just one study, though.

tarnalberry Community Regular
Hmm...this leads me to believe you probably can't:

Open Original Shared Link

It is just one study, though.

That would be the sort of difference that would do it. Interesting.

trents Grand Master
Hmm...this leads me to believe you probably can't:

Open Original Shared Link

It is just one study, though.

The key there may be: "The marrow donor was his HLA-identical sister." The marrow recipient was a close relative who may have also carried the celiac genes. It is generally accepted among celiac experts that one trigger for activating latent celiac disease in adults is significant illness or other major stress. I would think lukemia and a bone marrow transplant would qualify for that.

I was disallowed being a blood doner for years because of elevated liver enzymes. After Celiac dx and going on gluten free diet for a few months the liver enzymes normalized and the blood bank people allowed me to donate once again, with the full knowledge that I was a celiac. This is in USA.

Steve

VydorScope Proficient

I just wanted to add the offical Red Cross response that I received when I asked hem about donating.

No problem whatsoever, Vincent.

Hope we see you soon.

We have recently converted to the Universal American Association of Blood Banking blood donation record, which is completely different than the old record we used to give you.

There is no longer any question that would require you to volunteer that information.

To avoid confusion, or a slow down in the (already lengthy) registration process, I wouldn’t mention it.

If you have further questions, feel free to e-mail.

Have a good day.

Steve Sadler

Problem Management Specialist

Ì American Red Cross

Tennessee Valley Region

2201 Charlotte Avenue

Nashville, TN 37203

' (615) 321-9476

' (800) 253-0957, ext. 8371

mailto:Sadlers@usa.redcross.org

h Together, We Can Save A Life

Jennas-auntie Apprentice

I volunteered at the National Bone Marrow Registry Day in my local city spring before last, and was curious if it was on their list, so I asked, and was told at this time celiac is on the "no donate" list. So no at 4/2005 anyway.

2Boys4Me Enthusiast

I don't understand why you couldn't donate bone marrow. You have to be an EXACT match to the last HLA allele to donate/receive, right? That means who ever is getting your bone marrow already has the gene for celiac. Or am I way off base?

  • 5 years later...
NemmaNoo Newbie

I don't understand why you couldn't donate bone marrow. You have to be an EXACT match to the last HLA allele to donate/receive, right? That means who ever is getting your bone marrow already has the gene for celiac. Or am I way off base?

You can't donate bone marrow as it contains a source of stem cells meaning that some of the cells have the potential to become almost any other cell. This means that every stem cell has the protein code for celiacs but can still become practically any cell. Because of this, stem cells are universal. :)

mushroom Proficient

You can't donate bone marrow as it contains a source of stem cells meaning that some of the cells have the potential to become almost any other cell. This means that every stem cell has the protein code for celiacs but can still become practically any cell. Because of this, stem cells are universal. :)

But how would anyone know whether or not I am celiac since I can no longer be tested for it (and never was)??? And even if I did carry a celiac gene it may never become activated? Do they let DQ2's and DQ8's donate?

Jestgar Rising Star

You can't donate bone marrow as it contains a source of stem cells meaning that some of the cells have the potential to become almost any other cell. This means that every stem cell has the protein code for celiacs but can still become practically any cell. Because of this, stem cells are universal. :)

This paragraph makes absolutely no sense.

psawyer Proficient

This paragraph makes absolutely no sense.

I agree. I wonder if NemmaNoo can provide a source for the claim.

psawyer Proficient

There is a more recent discussion here. That one includes links to external sources.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,901
    • Most Online (within 30 mins)
      7,748

    tessycork47
    Newest Member
    tessycork47
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • trents
      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
×
×
  • 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.