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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

Can U A Bone Marrow Donor?
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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.

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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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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?

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 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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