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.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    2. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,335
    • Most Online (within 30 mins)
      7,748

    johnfreirefr
    Newest Member
    johnfreirefr
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
×
×
  • 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.