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Can U A Bone Marrow Donor?
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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.

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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

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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.

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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

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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?"

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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.

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

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

Ken

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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.

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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.
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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!

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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.

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

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

Thanks all

ken

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What about other organs in the case of death?

Does anybody know?

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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?

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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.

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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.

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

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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

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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. 

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    • Hi everyone, I've been reading this forum sporadically and have some questions of my own. I'm in my 40s and was diagnosed with celiac last December by biopsy and blood work after months of tests by my primary and then a gastro. My husband, around the same age as me, was dx'd with stage 4 cancer a month later, so admittedly it's took me longer than I'd have liked to learn about celiac. Now I feel pretty on top of my diet. I mostly make my own food - proteins and veggies, with some certified gluten-free snacks in the mix - and am pretty strict about what I will/won't eat at friend's houses or in restaurants (I prefer to go to dedicated gluten-free kitchens whenever possible). I'm doing okay on the diet, but still getting glutened every so often, usually when I let me guard down outside the home. I also periodically see my primary and a naturopath (who happens to have celiac!), but still, I have many questions if anyone would care to answer:

      -FATIGUE. I'm still so tired, fatigued so much of the time. My doctors blame this on the stress of my husband's diagnosis and my periodic trouble sleeping. But even during weeks where I'm sleeping enough (8-10 hrs a day), eating right, exercising as I can, trying to keep stress at bay, I'm still so bleeping tired. Maybe not when I wake up, but by late afternoon. Often my legs even feel weak/wooden. Has anyone else experienced greater fatigue early on after being diagnosed? This will pass, yes? I know I could cut out the sweets and that could help, but also, being a caregiver is hard and sometimes it's nice to eat your feelings between therapy sessions.  

      -SYMPTOMS CAUSED BY FATIGUE? Sometimes I'll have other "feels like I've been glutened" symptoms if I haven't gotten enough sleep, though I'm trying so hard to sleep at least 8 hours a night these days. Hasn't happened in a while thankfully, but there was a point this summer where my insomnia was bad and my arms were achy and I had some crazy flank/back pain I'd never experienced before. For weeks. Doctor ordered me to sleep sleep sleep, taking Benedryl if needed. I did, and the symptoms went away, but weird, yes? Has this happened to you? I ask because I want to make sure I'm getting all strange pains tested to the full extent if there's a chance it's something other than celiac. I do sometimes still feel that strange side stitch after a CC incident.

      -SKIN PROBLEMS. I have had a smidge of eczema since I was a teen and it - and the dermatitis herpetiformis I've acquired with my dx - are out of control right now. I recognize the connection with stress, but also, has anyone found any great natural remedies for DH to stop the itching? I've tried so many useless ointments and medicated creams, a number of them given to my by a dermo months ago. I see my naturopath this week, but thought I'd ask here too.

      -MOSTLY gluten-free KITCHEN GOOD ENOUGH? My husband is supportive of my diet and mostly eats gluten free meals with me, but we still keep a gluten-y toaster for him and the gluten-y dog food in a corner of the kitchen and he still makes the occasional meal with gluten for himself on his own cookware (ravioli, pizza, mac n cheese, etc). Or sometimes I make eggs/toast and the like for him when he's too sick to move. Otherwise, we're militant about how we cook, which cookware we use, etc. He even has a kitchen nook off our den where he makes sandwiches. But sometimes I wonder if having two separate sponges in our shared-ish main kitchen is enough and I should just banish all gluten whatsoever from the kitchen. I can't be the only one with a mixed kitchen, right? How do you do it if you have a mixed-eating family?

      Thank you so much!  
    • Hang in there!  Count your blessings.  Do something you like to do and relax. I know that is hard to do as a young mother (as I sit here in the kitchen sipping coffee quietly as my teenager is sleeping in after a late football game last night where she marched in 90 degree plus weather in full uniform).   But seriously, take a few minutes to relax!  
    • Meredith, this is very true. A colonoscopy is for diagnosis of the lower intestine, endoscopy for the upper intestine.  How did your doctor interpret the tests? I suggest you read the link Cycling Lady gave you because it contains a lot of good information. 
    • Sorry, but this product (supplement) is not even certified gluten free.   Seems odd that a product geared to Non-Celiac Gluten Intolerance would not take the extra step of getting certified.   I guess I am a Nervous Nellie, especially after the reports that several probiotics were contaminated with gluten.   https://celiac.org/blog/2015/06/probiotics-your-friend-or-foe/
    • Thank you for posting that. I've had a lot of that bloodwork done and everything is normal. At the peak of this belly bug I had blood work done and my white count was fine. I think it's just my health anxiety scaring me into thinking this is something scarier (to me) than celiac. Maybe the anxiety will subside once I go gluten-free. The anxiety is brutal.
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