Blood Transfusion And Blood Panel

[afitgirl]

I'm sure to you guys its obvious I'm in denial.   But I'm looking for any hope I can.   I felt great!  Amazing and then one day dropped to the ground.  No iron, low hemos were my problem.  I do have extremely heavy periods (think: crime scene) that they said were the problem. 

I needed two bags of blood (which I assume were from two different donors)   Since that day April 23, 2014 I haven't felt the same at all.
Horrible and a struggle to pick myself up.  Before I was on cloud 9.

My question is:

Possible at all that my blood transfusion gave me positive celiac blood results?  The transfusion and tests were done 19 days apart.

 

At the hospital my other nutrients were great.   Normal potassium, calcium, and sodium.   The only weak area was my iron.

And really my periods have to have some blame in that.   Every 19 days and SOOO heavy.  Since the transfusion I have been on iron supplements and folic acid (to help absorb) it and my levels are all normal or super close to it.   I only take one pill of each a day.

 

I also ask because the ran a 3 month blood screen (whatever that is--checking sugars for diabetes) and it came back inaccurate due to the recent blood transfusion.

[kareng]

Maybe the reason you had the blood transfusion is a big part of your problems?  By now, all that blood should be mostly "dead" .  Red blood cells "live" about 28 days.  Everyday, some die and more are born.  Did you get "whole blood" or platelets?  These are things to ask the doctor.  

[afitgirl]

So 19 days probably mostly dead then.

Is it possible I'm producing antibodies to their blood that could show up on the test?

My doctors were so confident that the anemia was heavy period related. When I didn't have a period (pregnancy and breast feeding) my numbers were fine. I'm the one that pleaded for this test for peace of mind.

I do need to find out of it was platelets or whole blood. Wonder how I can figure that out?

[nvsmom]

...Is it possible I'm producing antibodies to their blood that could show up on the test?

....I do need to find out of it was platelets or whole blood. Wonder how I can figure that out?

 

Was it the DGP IgG that you had a positive result with?  that is testing for antibodies to the deaminated gliadin peptides (a gluten protein) which is not an antibody to blood. 

 

There are antibodies to blood, I had ITP and my body killed off my platelets so I could not clot and hae very heavy blood loss during menstration, also to the point of needing a blood transfusion (which I skipped as those were the early days of the AIDS epidemic). ITP is slightly linked to celiac disease but it will not cause a positive celiac disease test. It is more likely that untreated celiac disease caused my ITP.

 

You said you were on cloud nine when you needed a blood transfusion but felt poorly afterwards... When I needed my blood transfusion I was so weak I was falling asleep on buses and almost fainting at work; I was so pale that people were commenting on it - definitely not cloud 9. LOL  Are you sure you feel worse now than before the transfusion?  If so, you should see you doctor again... That's just not normal.

 

(hugs) I hope you get it all straightened out soon!

[kareng]

So 19 days probably mostly dead then.

Is it possible I'm producing antibodies to their blood that could show up on the test?

My doctors were so confident that the anemia was heavy period related. When I didn't have a period (pregnancy and breast feeding) my numbers were fine. I'm the one that pleaded for this test for peace of mind.

I do need to find out of it was platelets or whole blood. Wonder how I can figure that out?

If you were making antibodies to a blood transfusion - no it wouldn't show on a Celiac test. But you wouldn't be here posting without medical treatment for a blood transfusions reaction like that. It's a serious, life- threatening thing and you know it within hours, usually of the transfusion.

I know you don't believe you have celiac disease. Fine. Eat gluten and live your life until you feel really bad. Then you can be re- tested. Maybe at that time you will want to treat it. If you never feel bad, then .....great!

[afitgirl]

If you were making antibodies to a blood transfusion - no it wouldn't show on a Celiac test. But you wouldn't be here posting without medical treatment for a blood transfusions reaction like that. It's a serious, life- threatening thing and you know it within hours, usually of the transfusion.

I know you don't believe you have celiac disease. Fine. Eat gluten and live your life until you feel really bad. Then you can be re- tested. Maybe at that time you will want to treat it. If you never feel bad, then .....great!

 I'm sorry if I offended you..    No, I just don't understand it all yet and I'm really scared.   Like really, really, really scared.

It is confusing to me because I read about "being gluten" and horrible damage secretly going on in the body.  It would seem that everyone would live in fear.  Always.  I'm just trying to find out what is true.    I'm fine with the dietary changes.  That part seems easy to me.  I'm sitting here now eating a bowl of watermelon and it's a choice not an gluten-free option.  What is scary to me is that it is cut  and stuck in a plastic bowl.   So potentially I could be living my life gluten-free and not getting better because I'm contaminating myself.  Right?  Isn't that how it works?  I'm scared of that!!!   That is what I don't understand.   And how do I know if I get better?   I think cross contamination will kill me not my lack of trying with the food.    

I haven't even seen a GI, its been referred but no call yet.   I've just seen my OB and family doctor who thought I was crazy for wanting this and KNOW nothing about it.    My only understanding is coming from you guys.  And the life you lead is scary to me. 

[BlessedMommy]

Maybe it's time to relax a bit and not try to think about cleaning out your kitchen until after your DX. Sounds like maybe you need to take time to process everything.

 

Keep in mind  that although CC seems scary, that cleaning out your kitchen and keeping gluten out of the house (or carefully segregated) is probably 50% or more of the battle with cross contamination. If your house is safe from gluten, that is the #1 thing right there.

[afitgirl]

Was it the DGP IgG that you had a positive result with?  that is testing for antibodies to the deaminated gliadin peptides (a gluten protein) which is not an antibody to blood. 

 

There are antibodies to blood, I had ITP and my body killed off my platelets so I could not clot and hae very heavy blood loss during menstration, also to the point of needing a blood transfusion (which I skipped as those were the early days of the AIDS epidemic). ITP is slightly linked to celiac disease but it will not cause a positive celiac disease test. It is more likely that untreated celiac disease caused my ITP.

 

You said you were on cloud nine when you needed a blood transfusion but felt poorly afterwards... When I needed my blood transfusion I was so weak I was falling asleep on buses and almost fainting at work; I was so pale that people were commenting on it - definitely not cloud 9. LOL  Are you sure you feel worse now than before the transfusion?  If so, you should see you doctor again... That's just not normal.

 

(hugs) I hope you get it all straightened out soon!

I had a postive on endomysial Antibody IGA and a TTG score of 17.

 

The blood transfusion came out of nowhere!  I was on day 1 of my period. (Which I bleed through a tampon in less than an hour for 2 full days at least and have this cycle every 17-23 days).  

 Hyper and excited to teach a new boot camp class in that area and suddenly got dizzy and dropped.   I was taken to the hospital and my hemoglobin was a 7.6.   Since the transfusion I have been able to carry on my normal life but I need more sleep, I'm foggy mentally and lost some drive.  I haven't felt even 50% of what I used to feel. 

Before that I bounced around on top of the world.  I hated to even sleep.  I was mad when I had to get the 4-5 hours my body needed. 

I guess I do have some GI things but I thought it was normal.  I feel bloated after a huge meal. ( I was eating 3000 calories a day because I was exercising 2 hours or so every day with classes).     Maybe gassy too.  But I eat triple the amount of veggies that normal people eat also.   

 

[afitgirl]

Maybe it's time to relax a bit and not try to think about cleaning out your kitchen until after your DX. Sounds like maybe you need to take time to process everything.

 

Keep in mind  that although CC seems scary, that cleaning out your kitchen and keeping gluten out of the house (or carefully segregated) is probably 50% or more of the battle with cross contamination. If your house is safe from gluten, that is the #1 thing right there.

  Do I need a diagnoses?   I feel like my scores and this forums' opinion is my diagnoses, right?   I'm still seeing the GI, but won't they tell me what you do?

 

[BlessedMommy]

Most likely, but it's a good idea to get the biopsy, if feasible.

[kareng]

You don't offend me....maybe frustrate me.

You should continue to eat gluten until your testing is done. Maybe the Gi will want to repeat the blood tests? Or do an endo?

I eat pre- cut fruit from the grocery. The best test of if you are gluten-free enough is to re- test your blood every year and how you are feeling.

[cyclinglady]

Karen's right.  When I was severely anemic (hemo 7.0) and I was bleeding so severely, I could barely breathe.  I had to rest constantly (do a chore and then sit down).  I had to stop exercising -- really.  

 

I have always been anemic since I have a genetic anemia on top of the iron deficiency anemia that causes me to drop just out of range on lab tests.  But, it's amazing how the body compensates (maybe even the mind) for it.  

 

Yes, I think you need a diagnosis (so go for the endo) for yourself, your children and other family members.  And don't assume your GI knows what to do regarding the gluten-free diet.  Mine just called me with my biopsy results and told me a few local restaurants that offered a gluten-free menu.  I don't think he even understands how to live the gluten-free life.  But that's what this forum is for!!!!!

 

Being gluten-free is not a scary!  Scary is the drive I make every day going to middle school with a van full of girls hoping that some idiot on a cell phone won't kill us! 

[nvsmom]

I had a postive on endomysial Antibody IGA and a TTG score of 17.

 

The blood transfusion came out of nowhere!  I was on day 1 of my period. (Which I bleed through a tampon in less than an hour for 2 full days at least and have this cycle every 17-23 days).  

 Hyper and excited to teach a new boot camp class in that area and suddenly got dizzy and dropped.   I was taken to the hospital and my hemoglobin was a 7.6.   Since the transfusion I have been able to carry on my normal life but I need more sleep, I'm foggy mentally and lost some drive.  I haven't felt even 50% of what I used to feel. 

Before that I bounced around on top of the world.  I hated to even sleep.  I was mad when I had to get the 4-5 hours my body needed. 

I guess I do have some GI things but I thought it was normal.  I feel bloated after a huge meal. ( I was eating 3000 calories a day because I was exercising 2 hours or so every day with classes).     Maybe gassy too.  But I eat triple the amount of veggies that normal people eat also.   

 

A positive EMA IgA is caused by celiac disease 99-100% of the time.  If you combine that with a positive tTG IgA, then a celiac diagnosis is a sure thing.    This report (page 12)  has info on the tests and shows that the specificity (what percentage of positive results are caused by celiac disease) of the tests you had is quite high. Open Original Shared Link

 

That's one of the problems when it comes to recognizing celiac symptoms is that many are insidious, and creep up so slowly that we don't notice - feeling poorly (with bloating and stomach aches) becomes the new normal.  Once your anemia issue is addressed, I bet you'll be pleasantly surprised how you feel better than you did in the past.

 

I do hope the doctors have figured out what caused your sudden anemia and are addressing the cause, and not just treating the problem.  Hopefully it was celiac disease related and it will improve after being gluten-free a few months.

 

Hang in there. It's a lot to wrap your head around but remind yourself that it could be worse.  We have a disease that requires a shift in our diet to treat. No dangerous medications or surgeries - we just have to watch what we eat. You sound like someone who was already health conscious so I bet you will be able to make the shift to gluten-free pretty smoothly... Just don't go gluten-free until after the GI appointment, if you can wait.

 

Best wishes.

[LauraTX]

I do need to find out of it was platelets or whole blood. Wonder how I can figure that out?

 

Assuming you got a good look at what was coming in the tube... Whole blood will look like... well, blood.  Hehe.  Just platelets will look different- a more transparent tan-yellow or yellow-brownish color.  (It isn't red because they spin it and take the red cells out)  For example pics, you can google image search "Platelets bag".

[afitgirl]

Well it was normal red blood. Not platelets then.

[Questore]

When my niece was first diagnosed after years of suffering...that was so similar to mine, that I wondered what she was complaining about...I only heard that she had to change her whole diet.

 

One of my friends has been going gluten free because her sister had issues...not celiac disease, but gluten sensitive...I have not wanted to listen.  I have not wanted to change my habits.  I have not wanted to give up what is easy and tasty.

 

Then I hear that my niece is doing great...no more pain...no more anxiety...depression...anger problems...sickness...she is better than she has been since a teenager (now 35ish).

 

I read.  I read a lot.  And then I look at the pattern of my diagnoses over my lifetime.  I have boxes of medical records...BORING!

 

I am sick of being sick, and so tired of being tired, and then I think, well, what if I did?  Change?  Me Changing?  You mean I could do more than juicing veggies a gallon a day, and get still better?  I already improved my absorption by juicing enough for me to feel like getting up long enough to buy the veggies, and do the juicing...to the point of putting in a greenhouse, and raising my own stuff...but stop eating my comfort foods???

 

When you have only discomfort you want some comfort somewhere.  I have a dog, and a cat.  I am 59, alone, and broken.  But I have another 30 years left of this life without trying that hard...my great grannies lived to over a hundred each without doctors.  That's a long time to lie around suffering if I don't have to suffer...especially since I already changed my diet in a major way 3 1/2 years ago.  I only have to drop grains, and I'm on paleo already...organic all I can afford. (Which is why I am raising my own...5 acres in SoCal!)
 

I prayed about it.  I heard direction.  I came here, read some more.  Then I looked my diagnoses, and said, that's it...I don't need to wait...I am alone...only me to get me better (and God). 

 

5 days...so far, so much better (4th day started feeling a difference...about as long as it takes to clear your digestive system of what is in it. 

 

The damage is there, but the stuff digesting is better, and some of the brain fog lifts a bit, and I actually feel like doing something for over an hour?  Wow.

 

 

 

If you want to be well, you will need to change.  Period.  If you do not, you are fulfilling the definition of insanity...doing the same thing, and expecting a different result.

 

Your life...your choice...but lots of hugs anyway!

 

XXXXX

 

P.S.  It actually is fun throwing all the junk out in your kitchen...expensive, but fun!  And cute little bags of grains and stuff I never heard of...and it's not that different. 

 

It's okay.  I will get used to it. 

 

I have gotten used to a lot worse, and so look forward to better.