Guest guest Posted August 8, 2006 Report Share Posted August 8, 2006 Congratulations on giving blood. I made a commitment after 9-11, to give blood every chance I can. There's not a lot I can do to be a "hero", but I can give blood. Sadly, I just received notice that I have almost no iron in my blood, once again. My transglutaminase numbers are good so I know I am diet-compliant, but I don't know why my iron has dropped. I'm now on a prescription iron supplement and if that doesn't do the trick, I might have to have IV iron supplements. My celiac dx was made due to low-iron anemia. Once I began the gf diet, my iron numbers rebounded quite nicely. Now I will need to cancel my blood donation for next week. Any suggestions, comments, or similar stories? Denver Donna giving blood My GF diet MUST be working well. I already know it is because:a - I feel much betterb - my transglutaminase went down to zeroBut today I got additional proof.I've not taken a multivitamin in about a year, because I haven'tbothered to find a GF one. Today I gave blood. It has been a while since I've given. I gotdeferred the last two times I went for various reasons. SometimesI've been deferred for low iron. My blood didn't fall down through the blue goo in the required timeperiod (15 seconds) so they had to spin it in the hemo machine tosee how much iron I have. I was expecting to be deferred for lowiron. So I was thinking "Hmmm.... guess I'll have to find a GFmultivitamin after all."The nurse came back and said "Surprise me! Your hematocrit is 41.High enough to do Double Red donation if you want to do that."Um, no thanks on the Double Red donation. But I was happy to hear that my hematocrit is higher than I ever remember it beingbefore!I guess that new diet is working wonders on the iron absorption.Esther in RI(blood donation #45 in Rhode Island alone. I don't know how manytimes I donated in Massachusetts.) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2006 Report Share Posted August 8, 2006 > Sadly, I just received notice that I have almost no iron in my > blood, once again. My transglutaminase numbers are good so I know > I am diet-compliant, but I don't know why my iron has dropped. I'm > now on a prescription iron supplement and if that doesn't do the > trick, I might have to have IV iron supplements. My celiac dx was > made due to low-iron anemia. Once I began the gf diet, my iron > numbers rebounded quite nicely. Now I will need to cancel my blood > donation for next week. Do you have heavy periods? Are you on PPIs or other reflux meds? A variety of things can cause low iron absorption. My hematologist thinks I'll probably need IV iron every 3-4 months for the next decade or two because my gut still doesn't absorb it well (I have a long history of anemia) and because I have very heavy menses (no endo, no clotting disorders, just heavy). IV iron helps me feel great, so I don't complain too much. ygg Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2006 Report Share Posted August 8, 2006 Dear Esther, Thank you for possibly saving my life. When I had my daughter, I hemorrhaged. I needed 10 units of blood and a stay in intensive care. You may be the reason that my family has a mother. Love, > > My GF diet MUST be working well. I already know it is because: > > a - I feel much better > b - my transglutaminase went down to zero > > But today I got additional proof. > > I've not taken a multivitamin in about a year, because I haven't > bothered to find a GF one. > > Today I gave blood. It has been a while since I've given. I got > deferred the last two times I went for various reasons. Sometimes > I've been deferred for low iron. > > My blood didn't fall down through the blue goo in the required time > period (15 seconds) so they had to spin it in the hemo machine to > see how much iron I have. I was expecting to be deferred for low > iron. So I was thinking " Hmmm.... guess I'll have to find a GF > multivitamin after all. " > > The nurse came back and said " Surprise me! Your hematocrit is 41. > High enough to do Double Red donation if you want to do that. " > > Um, no thanks on the Double Red donation. But I was happy to > hear that my hematocrit is higher than I ever remember it being > before! > > I guess that new diet is working wonders on the iron absorption. > > Esther in RI > (blood donation #45 in Rhode Island alone. I don't know how many > times I donated in Massachusetts.) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2006 Report Share Posted August 8, 2006 Okay Esther, so here is my question...If all is well with your celiac stuff, then how is it that you seem to get glutened often, but everything is okay? Especially with the recent episode, wouldn't you think that things wouldn't be good with your trans. and other stuff then? Maybe I don't understand I guess, but that would seem odd to me that all is well with the celiac disease, but you still keep getting sick. I guess I would look elswhere for answers as to why you are getting sick and not assume it's the celiac disease???? Just a thought. Rhiannon > > > > My GF diet MUST be working well. I already know it is because: > > > > a - I feel much better > > b - my transglutaminase went down to zero > > > > But today I got additional proof. > > > > I've not taken a multivitamin in about a year, because I haven't > > bothered to find a GF one. > > > > Today I gave blood. It has been a while since I've given. I got > > deferred the last two times I went for various reasons. Sometimes > > I've been deferred for low iron. > > > > My blood didn't fall down through the blue goo in the required time > > period (15 seconds) so they had to spin it in the hemo machine to > > see how much iron I have. I was expecting to be deferred for low > > iron. So I was thinking " Hmmm.... guess I'll have to find a GF > > multivitamin after all. " > > > > The nurse came back and said " Surprise me! Your hematocrit is 41. > > High enough to do Double Red donation if you want to do that. " > > > > Um, no thanks on the Double Red donation. But I was happy to > > hear that my hematocrit is higher than I ever remember it being > > before! > > > > I guess that new diet is working wonders on the iron absorption. > > > > Esther in RI > > (blood donation #45 in Rhode Island alone. I don't know how many > > times I donated in Massachusetts.) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2006 Report Share Posted August 9, 2006 When I tried to give blood after my diagnosis, I was told that I was not allowed to give, because of the celiac. Has anyone else been turned down? > > My GF diet MUST be working well. I already know it is because: > > a - I feel much better > b - my transglutaminase went down to zero > > But today I got additional proof. > > I've not taken a multivitamin in about a year, because I haven't > bothered to find a GF one. > > Today I gave blood. It has been a while since I've given. I got > deferred the last two times I went for various reasons. Sometimes > I've been deferred for low iron. > > My blood didn't fall down through the blue goo in the required time > period (15 seconds) so they had to spin it in the hemo machine to > see how much iron I have. I was expecting to be deferred for low > iron. So I was thinking " Hmmm.... guess I'll have to find a GF > multivitamin after all. " > > The nurse came back and said " Surprise me! Your hematocrit is 41. > High enough to do Double Red donation if you want to do that. " > > Um, no thanks on the Double Red donation. But I was happy to > hear that my hematocrit is higher than I ever remember it being > before! > > I guess that new diet is working wonders on the iron absorption. > > Esther in RI > (blood donation #45 in Rhode Island alone. I don't know how many > times I donated in Massachusetts.) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2006 Report Share Posted August 9, 2006 I have been turned down also. Not only do I have celiac but I had a transfusion when my son was born 8 years ago. sjkrup wrote: When I tried to give blood after my diagnosis, I was told that I was not allowed to give, because of the celiac.Has anyone else been turned down?>> My GF diet MUST be working well. I already know it is because:> > a - I feel much better> b - my transglutaminase went down to zero> > But today I got additional proof.> > I've not taken a multivitamin in about a year, because I haven't> bothered to find a GF one. > > Today I gave blood. It has been a while since I've given. I got> deferred the last two times I went for various reasons. Sometimes> I've been deferred for low iron. > > My blood didn't fall down through the blue goo in the required time> period (15 seconds) so they had to spin it in the hemo machine to> see how much iron I have. I was expecting to be deferred for low> iron. So I was thinking "Hmmm.... guess I'll have to find a GF> multivitamin after all."> > The nurse came back and said "Surprise me! Your hematocrit is 41.> High enough to do Double Red donation if you want to do that."> > Um, no thanks on the Double Red donation. But I was happy to > hear that my hematocrit is higher than I ever remember it being> before!> > I guess that new diet is working wonders on the iron absorption.> > Esther in RI> (blood donation #45 in Rhode Island alone. I don't know how many> times I donated in Massachusetts.)> Stay in the know. Pulse on the new Yahoo.com. Check it out. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2006 Report Share Posted August 9, 2006 The policy about whether to take celiac blood varies with the donation program. My particular program (Rhode Island Blood Center) does NOT have an issue with celiac. Until recently, all of Canadian blood centers declined celiacs' blood. Some of the Canadian programs will now take celiacs' blood. The blood centers that decline celiac blood say they do so because it's an auto-immune disease and decline other blood from people with auto-immune diseases. I'm glad my blood center will take celiac blood. But if they didn't, I would not donate, of course. Esther in RI > > > > My GF diet MUST be working well. I already know it is because: > > > > a - I feel much better > > b - my transglutaminase went down to zero > > > > But today I got additional proof. > > > > I've not taken a multivitamin in about a year, because I haven't > > bothered to find a GF one. > > > > Today I gave blood. It has been a while since I've given. I got > > deferred the last two times I went for various reasons. Sometimes > > I've been deferred for low iron. > > > > My blood didn't fall down through the blue goo in the required time > > period (15 seconds) so they had to spin it in the hemo machine to > > see how much iron I have. I was expecting to be deferred for low > > iron. So I was thinking " Hmmm.... guess I'll have to find a GF > > multivitamin after all. " > > > > The nurse came back and said " Surprise me! Your hematocrit is 41. > > High enough to do Double Red donation if you want to do that. " > > > > Um, no thanks on the Double Red donation. But I was happy to > > hear that my hematocrit is higher than I ever remember it being > > before! > > > > I guess that new diet is working wonders on the iron absorption. > > > > Esther in RI > > (blood donation #45 in Rhode Island alone. I don't know how many > > times I donated in Massachusetts.) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2006 Report Share Posted August 9, 2006 Michigan has no problem with the Celiac and blood donation. In fact, they call me at home to make sure I remember I can donate again Re: giving blood The policy about whether to take celiac blood varies with thedonation program. My particular program (Rhode Island Blood Center)does NOT have an issue with celiac. Until recently, all of Canadian blood centers declined celiacs' blood. Some of the Canadianprograms will now take celiacs' blood. The blood centers thatdecline celiac blood say they do so because it's an auto-immunedisease and decline other blood from people with auto-immunediseases. I'm glad my blood center will take celiac blood. Butif they didn't, I would not donate, of course. Esther in RI> >> > My GF diet MUST be working well. I already know it is because:> > > > a - I feel much better> > b - my transglutaminase went down to zero> > > > But today I got additional proof.> > > > I've not taken a multivitamin in about a year, because I haven't> > bothered to find a GF one. > > > > Today I gave blood. It has been a while since I've given. I got> > deferred the last two times I went for various reasons. Sometimes> > I've been deferred for low iron. > > > > My blood didn't fall down through the blue goo in the required time> > period (15 seconds) so they had to spin it in the hemo machine to> > see how much iron I have. I was expecting to be deferred for low> > iron. So I was thinking "Hmmm.... guess I'll have to find a GF> > multivitamin after all."> > > > The nurse came back and said "Surprise me! Your hematocrit is 41.> > High enough to do Double Red donation if you want to do that."> > > > Um, no thanks on the Double Red donation. But I was happy to > > hear that my hematocrit is higher than I ever remember it being> > before!> > > > I guess that new diet is working wonders on the iron absorption.> > > > Esther in RI> > (blood donation #45 in Rhode Island alone. I don't know how many> > times I donated in Massachusetts.)> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2006 Report Share Posted August 9, 2006 Hearty congrats Esther! Iron absorbtion is something I still have problems with.. sigh. So keep taking the mega doses of Iron as the Dr Rx'ed! HOPEFULLY, soon I will have decent iron levels, but Im not holding much hope it will be any time soon. Im really worrying about this 5 mos stint in the US in outer podunk nowhere MN. Would have been so much easier in the greater Atlanta area to shop. Oh well, lots of mail ordering & home cooking! Best! Cassi Gluten free in downtown Imatra! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2006 Report Share Posted August 9, 2006 Hearty congrats Esther! Iron absorbtion is something I still have problems with.. sigh. So keep taking the mega doses of Iron as the Dr Rx'ed! HOPEFULLY, soon I will have decent iron levels, but Im not holding much hope it will be any time soon. Im really worrying about this 5 mos stint in the US in outer podunk nowhere MN. Would have been so much easier in the greater Atlanta area to shop. Oh well, lots of mail ordering & home cooking! Best! Cassi Gluten free in downtown Imatra! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2006 Report Share Posted August 9, 2006 Here in Minnesota they were okay with taking blood even if I was Celiac. However, I then was turned down because my iron was too low. Robin K. MN In three words I can sum up everything I've learned about life: it goes on.- Frost From: SillyYaks [mailto:SillyYaks ] On Behalf Of esther_p210Sent: Wednesday, August 09, 2006 12:16 PMTo: SillyYaks Subject: Re: giving blood The policy about whether to take celiac blood varies with thedonation program. My particular program (Rhode Island Blood Center)does NOT have an issue with celiac. Until recently, all of Canadian blood centers declined celiacs' blood. Some of the Canadianprograms will now take celiacs' blood. The blood centers thatdecline celiac blood say they do so because it's an auto-immunedisease and decline other blood from people with auto-immunediseases. I'm glad my blood center will take celiac blood. Butif they didn't, I would not donate, of course. Esther in RI> >> > My GF diet MUST be working well. I already know it is because:> > > > a - I feel much better> > b - my transglutaminase went down to zero> > > > But today I got additional proof.> > > > I've not taken a multivitamin in about a year, because I haven't> > bothered to find a GF one. > > > > Today I gave blood. It has been a while since I've given. I got> > deferred the last two times I went for various reasons. Sometimes> > I've been deferred for low iron. > > > > My blood didn't fall down through the blue goo in the required time> > period (15 seconds) so they had to spin it in the hemo machine to> > see how much iron I have. I was expecting to be deferred for low> > iron. So I was thinking "Hmmm.... guess I'll have to find a GF> > multivitamin after all."> > > > The nurse came back and said "Surprise me! Your hematocrit is 41.> > High enough to do Double Red donation if you want to do that."> > > > Um, no thanks on the Double Red donation. But I was happy to > > hear that my hematocrit is higher than I ever remember it being> > before!> > > > I guess that new diet is working wonders on the iron absorption.> > > > Esther in RI> > (blood donation #45 in Rhode Island alone. I don't know how many> > times I donated in Massachusetts.)> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2006 Report Share Posted August 14, 2006 Celiac is not a deferral for blood donation. As a matter of fact, it wasn't until after my diagnosis, that my iron levels allowed me to donate. I donate 3-5 times a year without any problems. Lizz > > According to Memorial Blood Ctr here in MN, it's not a deferral to have Celiac disease. They have all their listings on a computer system to make things easier. Though what org were you attempting to donate? > Jo > Re: giving blood > > When I tried to give blood after my diagnosis, I was told that I was > not allowed to give, because of the celiac. > > Has anyone else been turned down? > > . > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2006 Report Share Posted August 14, 2006 Donations were made through INOVA, in Fairfax, VA. I received a notice the other day about giving, and it specifically listed " any auto-immune disease " as an exclusion from donating... Have you told the Blood Mobile personnel that you're celiac? Did they know what it is? When I mentioned it, they had to look it up in a book, but did find it and told me I couldn't give. Someone else on this list suggested that it varies by location (even within the US), which doesn't make much sense, but what does? > > > > According to Memorial Blood Ctr here in MN, it's not a deferral to > have Celiac disease. They have all their listings on a computer > system to make things easier. Though what org were you attempting to > donate? > > Jo > > Re: giving blood > > > > When I tried to give blood after my diagnosis, I was told that I > was > > not allowed to give, because of the celiac. > > > > Has anyone else been turned down? > > > > . > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2006 Report Share Posted August 14, 2006 > > Someone else on this list suggested that it varies by location (even > within the US), which doesn't make much sense, but what does? > > The given program can make whatever rules it wants, as long as it has AT LEAST the rules that the FDA says it should have. I mean, suppose a particular program says " NO BLOOD FROM BLUE EYED PEOPLE " . It would be a silly exclusion, sure. But hey. It's not like you can sue. They're not breaking any laws by saying " We don't want blood from the likes of you blue-eyeds. " If you REALLY have your heart set on donating, you'd have to either find another center or get those funky colored contacts. That is, if you have blue eyes and red blood. Esther, blue eyed from a long string of blue-eyeds Ambassador for the Rhode Island Blood Center RIBC - They *DO* take celiac blood. And blood from blue-eyeds. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2006 Report Share Posted August 14, 2006 > > Someone else on this list suggested that it varies by location (even > within the US), which doesn't make much sense, but what does? > > The given program can make whatever rules it wants, as long as it has AT LEAST the rules that the FDA says it should have. I mean, suppose a particular program says " NO BLOOD FROM BLUE EYED PEOPLE " . It would be a silly exclusion, sure. But hey. It's not like you can sue. They're not breaking any laws by saying " We don't want blood from the likes of you blue-eyeds. " If you REALLY have your heart set on donating, you'd have to either find another center or get those funky colored contacts. That is, if you have blue eyes and red blood. Esther, blue eyed from a long string of blue-eyeds Ambassador for the Rhode Island Blood Center RIBC - They *DO* take celiac blood. And blood from blue-eyeds. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2006 Report Share Posted August 14, 2006 > > Someone else on this list suggested that it varies by location (even > within the US), which doesn't make much sense, but what does? > > The given program can make whatever rules it wants, as long as it has AT LEAST the rules that the FDA says it should have. I mean, suppose a particular program says " NO BLOOD FROM BLUE EYED PEOPLE " . It would be a silly exclusion, sure. But hey. It's not like you can sue. They're not breaking any laws by saying " We don't want blood from the likes of you blue-eyeds. " If you REALLY have your heart set on donating, you'd have to either find another center or get those funky colored contacts. That is, if you have blue eyes and red blood. Esther, blue eyed from a long string of blue-eyeds Ambassador for the Rhode Island Blood Center RIBC - They *DO* take celiac blood. And blood from blue-eyeds. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2006 Report Share Posted August 17, 2006 There has been some questions in the medical community regarding the issue of classifying Celiac as an auto-immune disease. In most auto- immune diseases the body attacks itself without outside influence. In Celiac disease, the body must have gluten to trigger the response, and deprived of gluten the body will heal itself in most cases. But it remains on the the list of auto-immune diseases regardless and it still increases your risk of getting other auto-immune diseases, so maybe it should be classified that way. I don't know. But I do know that before my starting the gf diet, I was never able to give blood because of low iron. Within 6 months of the diet I was able to give blood for the first time in my life, and I give 3-5 times a year now. I always tell them that I have Celiac, but since I am on the diet they don't see it as an issue. I am going to be donating next week if all goes well. All my donations have been with the Central California Blood Center and this is part of what their website says under acceptable conditions for donor eligibility: " Many medical conditions, as long as well controlled on current medication/therapy, no significant current or ongoing symptoms, and feeling well the day of donation - Diabetes, Allergies, Asthma, Osteoarthritis, Ulcer disease, Chronic Bronchitis, Fibromyalgia, Hypertension, Parkinson's Disease, Seizure Disorder (no seizures in past 3 months), Benign (not cancerous) tumors, and many others. " http://www.cencalblood.org/eligibility.html It must really vary by state and possibly even by county. nn in CA > > Donations were made through INOVA, in Fairfax, VA. I received a > notice the other day about giving, and it specifically listed " any > auto-immune disease " as an exclusion from donating... > > Have you told the Blood Mobile personnel that you're celiac? Did > they know what it is? When I mentioned it, they had to look it up in > a book, but did find it and told me I couldn't give. > > Someone else on this list suggested that it varies by location (even > within the US), which doesn't make much sense, but what does? > > Quote Link to comment Share on other sites More sharing options...
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