Blood transfusions and celiac

[Dave Neff]

Hello folks. I'm a 69 year old male with celiac. I am currently in the hospital for the 4th time since 2023. I have been here since January 7th and today I was told I  need another unit of blood. This will be my 9th transfusion. When not in the hospital I receive iron infusions weekly. I have a team of GI specialists that say I'm bleeding internally although 2 endoscopys and colonoscopys have shown nothing. Has anyone else experienced the same things? Has anyone else found a way to stop or slow this down? Quite frankly I'm sick of being so sick. Tia for any suggestions or help.      Dave

[trents]

Welcome to the forum, @Dave Neff!

More info would be appreciated.

How long ago were you diagnosed with celiac disease?

Have you been diligent with the gluten free diet?

Have you had follow-up testing to check for celiac antibodies or a follow-up biopsy to check for the condition of your small bowel villi and healing progress?

Are you a vegetarian such that you aren't getting any heme iron in your diet? 

What vitamin and mineral supplements are you using, if any?

Have you been checked for "pernicious anemia" (death of parietal cells and lack of intrinsic factor)?

[plumbago]

I'm so sorry you are going through this @Dave Neff. Do you think it has anything to do with Celiac? You deserve answers, that is for sure! Insist upon a conversation with a vascular specialist, and perhaps suggest an abdominal scan. I do not have any personal experience with this, but yes, I have cared for patients who have needed transfusions for various reasons. Stay in touch, and let us know how we can help.

[RMJ]

Have the GI specialists found blood in your stool? An endoscopy can’t see the whole small intestine.  Sometimes doctors will use a capsule (basically a tiny camera that you swallow) to look at the whole small intestine.

Lack of red blood cells can either be from bleeding, something destroying the red blood cells, or the body not making red blood cells.  

I hope your doctors figure out what’s going on soon!  

[Dave Neff]

I've had both an endoscopy and colonoscopy, nothing found. Next I'm assuming is the camera which I had done 4 years ago. I'm in the process right now of getting another unit of blood. I got 2 last night. I've lost count but it has to be at least 12 units since I was admitted January 8th (I think) I've lost count. I'm sure a lot of this is my own doing. I was told about 12 years ago I had celiac but I never had any of the symptoms related to it. I ate like normal, pasta, cake,etc. I never got sick until a little over 6 months ago and have been to the best of my knowledge gluten free since.

[trents]

So, to repeat RMJ's question, is the blood showing up in your stool? Man, this is no slow leak! Either that or it seems like you have some autoimmune thing going on that is eating up your red blood cells.

[Scott Adams]

I hope they can figure out what is going on with you. This thread may be helpful for you to restore your iron levels:

 

[plumbago]

What are they telling you is going on? Ie, diagnosis? Hope you get checked out by hematology and cardiology soon. Take care, and keep in touch.

[Wheatwacked]

Have they given your anemia a name?

Low vitamin D is ubiquitous in autoimmune diseases, can cause low stomach intrinsic factor which inhibits absorption of vitamin B12 leading to anemia.  

Vitamin B12 or folate deficiency anaemia occurs when a lack of either of these vitamins affects the body's ability to produce fully functioning red blood cells. 

Gluten free products are not fortified with folate and 90% all westerners  don't get enough Choline (eggs liver, beef, milk) causing the need for additional folate.

What is your blood vitamin D level, homocysteine level, Thiamine, B12, B6, folate, intrinsic factor? 

 

 

[Wheatwacked]

 

"Low vitamin B12 and folate levels have been associated with megaloblastic anemia, inadequate growth, increased infections, impaired memory and learning, lower academic scores, and poor cognitive performance.... Results from the present study demonstrated a positive correlation between vitamin D and vitamin B12/folate in children. As vitamin D levels decreased, serum B12 and folate levels also decreased."  Evaluation of correlation between vitamin D with vitamin B12 and folate

[Dave Neff]

23 hours ago, Scott Adams said:

I hope they can figure out what is going on with you. This thread may be helpful for you to restore your iron levels:

 

Thanks so much Scott. If and when I get out of the hospital I intend to research iron producing products. I am going in the morning for a bone marrow biopsy. Hopefully there isn't anything else going on.

 

[Scott Adams]

Let us know how it goes!

[crazymurdock]

On 1/20/2024 at 3:24 PM, Dave Neff said:

Hello folks. I'm a 69 year old male with celiac. I am currently in the hospital for the 4th time since 2023. I have been here since January 7th and today I was told I  need another unit of blood. This will be my 9th transfusion. When not in the hospital I receive iron infusions weekly. I have a team of GI specialists that say I'm bleeding internally although 2 endoscopys and colonoscopys have shown nothing. Has anyone else experienced the same things? Has anyone else found a way to stop or slow this down? Quite frankly I'm sick of being so sick. Tia for any suggestions or help.      Dave

Hi Dave, I have had Celiac Disease since 2003 with an upgrade to Type 2 Refractory Celiac Disease in 2014 which is still active. I have been anemic for over a year and my hemoglobin has been dropping every 3-month lab test. I actually will be going for an iron infusion tomorrow morning. Due to the anemia, last April my lymphoma doc suggested that I get a colonoscopy which was performed in June with an endoscopy - no issues as far as blood loss. I followed up with Columbia Celiac Center in November with another endoscopy - many issues but no blood loss issues. Ended up going back for a 12 hour capsule endoscopy the end of December and they found numerous bleeding ulcers and damage in the small intestine. They will be performing a balloon entroscopy - both ends, in March to take more biopsies, perform polypectomy and ablation of lesions at the same time. Point being - regular colonoscopies and endoscopies do not go in far enough into the intestines to see everything. I wish you luck!