CELIAC DISEASE AND POLYCYTHEMA VERA

[SamIPD]

Just curious if anyone knows if celiac disease and poylcythemavera are related. Can one disease lead to another one or is to common to have both at the same time.

[Scott Adams]

This is a good question because I’ve been treated for years for a high red blood cell count, but so far haven’t been diagnosed with anything. 

[cyclinglady]

Relegated to celiac disease?  I do not know.  I do know that my red blood cells are always elevated but that is due to Thalassemia, a genetic anemia.  I also had iron-deficiency anemia when I was undiagnosed.  Now healed from celiac disease, my iron-deficiency anemia has resolved. I still lots of tiny red blood cells, but again, that is due to Thalassemia in my case.  

Was your doctor concerned?   

[SamIPD]

20 minutes ago, cyclinglady said:

Relegated to celiac disease?  I do not know.  I do know that my red blood cells are always elevated but that is due to Thalassemia, a genetic anemia.  I also had iron-deficiency anemia when I was undiagnosed.  Now healed from celiac disease, my iron-deficiency anemia has resolved. I still lots of tiny red blood cells, but again, that is due to Thalassemia in my case.  

Was your doctor concerned?   

Well, I was diagnosed with both disease, and was just wondering if one could cause the other disease or what

[trents]

Related, as in cause and effect or just statistically?

[SamIPD]

16 minutes ago, trents said:

Related, as in cause and effect or just statistically?

Um, well I am a veteran and am trying to claim them as disability.  I have a current diagnosis of celiac disease and polycythemia VRA.  The celiac disease was suspicious in 2007 but not confirmed until recently.  The VA is asking me what could of caused your service to cause you to now have celiac disease.  I had all the symptoms of celiac disease during my service, (acid reflux, stomach pain, etc.) but was never actually stated in my records from a test, to confirm celiac disease at the time.  So, I am wondering if I could claim celiac disease, as secondary to polycythemia VRA.  Maybe in some medical books or sites, they reference that information, not sure where to look.  Just wondering if anyone would have any insight or additional information on linking the two diseases. 

[trents]

So what you are really asking is does anyone know of research that shows celiac disease may be triggered by polycythemia VRA. Correct?

[SamIPD]

13 minutes ago, trents said:

So what you are really asking is does anyone know of research that shows celiac disease may be triggered by polycythemia VRA. Correct?

Yes, that's what I need to research and provide back to the VA

 

[trents]

I'm not a doctor or medical researcher but I don't see how there could be a connection between the two. 

"Polycythemia vera occurs when a mutation in a gene causes a problem with blood cell production. Normally, your body regulates the number of each of the three types of blood cells you have — red blood cells, white blood cells and platelets. But in polycythemia vera, your bone marrow makes too many of some of these blood cells.The cause of the gene mutation in polycythemia vera is unknown, but it's generally not inherited from your parents." https://www.mayoclinic.org/diseases-conditions/polycythemia-vera/symptoms-causes/syc-20355850

People with celiac disease have a genetic predisposition to develop celiac disease. There is no evidence that I know of that suggests this disposition is a mutation. Besides, to be linked to polycythemeia VRA there would have to be overlap in the genes that cause each disease, which is possible, I suppose.

[SamIPD]

Thank you, we will see what the doctors have to say, I guess. Taking this one step further, would anyone know if Avitiminosis is related to celiac disease.  It is when you have a vitamin shortage of some sort, showing up in blood test.  I believe it is and if so I could link the vitamin shortage to the celiac disease.  I believe, my records show a shortage of vitamins in my blood work, through my military service.  

[trents]

Certainly, avitaminosis can and often does develop from celiac disease because of the villi damage and resultant nutrient malabsorption. Bloodwork as a standalone diagnostic procedure for avitaminosis can lead to under-diagnosis of some vitamin deficiencies. An example is B12 deficiency which can be masked by folic acid supplements.

And vitamins and minerals can be present in adequate quantities in serum analysis but still not being utilized properly by the cells for some reason. Clinicians usually also look at symptoms and life style issues when diagnosing vitamin deficiencies. A classic example is found in osteoporosis. Blood work often shows that serum calcium levels are normal because the body is removing the calcium from the bones and putting into the blood. And dietary calcium supplementation has not been proven to really fix this.

And of course, the biochemical interaction of vitamins and minerals is complex. They are codependent on one another. This is especially true of the B vitamins. So, it can be difficult to pinpoint which one is lacking.

[Posterboy]

3 hours ago, SamIPD said:

Thank you, we will see what the doctors have to say, I guess. Taking this one step further, would anyone know if Avitiminosis is related to celiac disease.  It is when you have a vitamin shortage of some sort, showing up in blood test.  I believe it is and if so I could link the vitamin shortage to the celiac disease.  I believe, my records show a shortage of vitamins in my blood work, through my military service.  

SamIPD,

This is a two part answer....

7 hours ago, SamIPD said:

Just curious if anyone knows if celiac disease and poylcythemavera are related. Can one disease lead to another one or is to common to have both at the same time.

I didn't see any relationship after a quick search in the literature....if any thing it argues against it...

Here is the only study I found on the topic and it was about "Pseudopolycythaemia and coeliac disease."

 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1433153/

As for your Avitiaminosis....vitamins deficiencies are definitely a part of being a Celiac...

I wrote a blog post about these connections...

 https://www.celiac.com/blogs/entry/2714-mayo-clinic-study-shows-micronutrient-deficiencies-are-still-common-in-contemporary-celiac-disease-despite-lack-of-overt-malabsorption-symptoms/?tab=comments

Sadly doctor's don't check for many micronutrient deficiencies maybe this new study by the Mayo Clinic will get insurance(s) to cover standard vitamin deficiency tests for Celiac's....until then ....they are not likely to be common tests.

I am low in Vitamin D now......they will only check once a year .....to see if I am still deficiency usually....last time I asked them myself to be checked.....and to my surprise I was still low!

I hope this is helpful but it is not medical advice.

Posterboy,

[cristiana]

On 4/29/2020 at 3:56 PM, Scott Adams said:

This is a good question because I’ve been treated for years for a high red blood cell count, but so far haven’t been diagnosed with anything. 

My blood tests have been interesting since my DX in 2013.  I've noticed that at times I have elevated red blood count and wonder if there is an overall upward trend but so far my doctors haven't said anything about it.   What is the treatment for high red blood cell count?

[Scott Adams]

So interestingly, after many years of tests, including sleep tests, I was prescribed a cpap machine and began using it about 2 months ago. My last two tests for my red blood cell count were in the normal range, so it appears that my "moderate sleep apnea" diagnosis was the culprit. Although I'm not excited about the idea of needing such a device, I suppose the fact that I've had measurable symptoms for 20+ years that are now apparently gone is a good thing.

[cristiana]

That's so interesting, Scott.  Thanks for posting.  My blood tests suggest something may be going on there.  I've had higher results for RBC, and hematocrit in the past, but my last test showed my haemaglobin was a tad higher than usual.  I was aware though before I went in for my test that I was dehydrated, and hadn't drunk enough that morning, so that may have been why.  Were you unaware you had sleep apnea? I do wonder if that is something I have but I'm not sure what the symptoms are!

[Scott Adams]

I've had snoring issues for which I've worn a special mouthpiece, and my wife has indicated that I have apnea symptoms, so I've done various sleep studies over the years. The apnea went from mild to moderate since my last sleep study, which was about 5 years ago, and it was mild in my first study over 20 years ago. I was doing monthly phlebotomies to keep my red blood cell count in the normal range, and without this my count would always be high within a month. I've gone 3 months without phlebotomy, and have had 2 blood tests to check levels, and both were in the normal range after using the cpap.

Being a side sleeper I went with a nasal mask that has a fitting that extents from the top of your head and doesn't get tangled up when you move around, thus, I'm actually quite surprised how easy it was to get used to (I was fighting the idea of this for years). At the very least, it is the most expensive anti-snoring device on the market, but apparently the most effective (as my wife can attest to! 😁).

[cristiana]

21 hours ago, Scott Adams said:

I've had snoring issues for which I've worn a special mouthpiece, and my wife has indicated that I have apnea symptoms, so I've done various sleep studies over the years. The apnea went from mild to moderate since my last sleep study, which was about 5 years ago, and it was mild in my first study over 20 years ago. I was doing monthly phlebotomies to keep my red blood cell count in the normal range, and without this my count would always be high within a month. I've gone 3 months without phlebotomy, and have had 2 blood tests to check levels, and both were in the normal range after using the cpap.

Being a side sleeper I went with a nasal mask that has a fitting that extents from the top of your head and doesn't get tangled up when you move around, thus, I'm actually quite surprised how easy it was to get used to (I was fighting the idea of this for years). At the very least, it is the most expensive anti-snoring device on the market, but apparently the most effective (as my wife can attest to! 😁).

This is really helpful, Scott, many thanks.   My husband say I snore but my children say it's my husband that snores! 

My consultant is just keeping an eye on things for the moment. 

Is a high RBC a variant of polycythemia?   

[Scott Adams]

In my case I was cleared of having polycythemia, hemochromatosis, as well as several other things like various forms of lymphoma (they drilled into my hip bone to extract a marrow sample...fun stuff). I am overdue for another monitoring test and I will post the results here. If my RBC falls into the normal range again it would mean that I've found the cause, but given my last two results I suspect that apnea is the cause.

[cristiana]

Yes, it sounds likely that you have found the cause.  Sounds like it has been a long haul, trying to find the answer.

I've been told polcythaemia vera itself is actually very rare but recently discovered a distant cousin has it, even though it isn't meant to be hereditary.  

I do wonder if years of iron deprivation has had some sort of rebound effect in my own case. 

Thanks again, Scott, for your replies, much appreciated - and for founding this site, for that matter.  I honestly don't know what I'd have done without it.  I have two friends who were diagnosed with coeliac disease within a few months of my own diagnosis and they have never looked back, whilst my own journey has been one weird blood test after another, and some of the strangest symptoms.  I remember once applying for health insurance and the chap at the call centre couldn't stop laughing as he said he'd never met anyone with such a bizarre health history.

 

[Scott Adams]

I just wanted to post an update on my situation. My latest test indicates that my Hematocrit is too high again at 48.7% as is my red blood cell count at 6.24 M/uL, so the cpap may not have fully solved my issue. I do take a lot of different supplements, and probably should not be taking, and have eliminated the following:

• B12
• B9 - folic acid
• B6 - pyridoxine
• Vitamin C
• Vitamin E

We will see how this goes.

On the positive side 2/3 of my last tests were normal after the cpap, but it is clear that I need to do more so that all tests are normal.

[cristiana]

Hi Scott

Thank you for posting this.   

It is strange that you mention supplements as I have been wondering about those myself.  I take B12 - just before I was diagnosed my levels were appalling and the difference that supplementing made on nerve issues and anxiety was extraordinary - night and day, totally transformational, so I have continued to take high dosage sublinguals..  My normals are now about 450 but I'm wondering if I am not allowed to take ferritin whether I should be cutting down B12 too.    

I wonder if you were iron anemic at diagnosis?  I was and my ferritin was 6.  I remember reading a post by another celiac with newly diagnosed polycythemia that perhaps it was because he had made do with low iron levels for so long and he now had what he needed for correct blood cell production his body had become too efficient at it!  It was put better than that, but I wonder if there is something in that?  Also, if is something that affects many other celiacs?  Mild cases of polycythemia could so easily go under the radar.

Anyway, thank you again for the update.  I do hope you find some answers in the New Year. 

Cristiana

[Scott Adams]

Interestingly, even though I had villi blunting at diagnosis I didn’t have anemia, and in my case have had this high red blood cell issue since around the same time period that I was diagnosed with celiac disease, so over 25 years. I recently had my blood B12 levels measured and they were way above normal due to long-term supplementation, and B12 can increase red blood cell production (as well as the other supplements I’ve eliminated). 

I did another phlebotomy a couple of days ago, and need to do another in a month, to get back into the range my doctor wants me to be at (under 45 on the Hematocrit). I hope my supplement changes with the cpap will finally keep things in check.

I do think you have a good point and it’s possible that my body did somehow adapt to my untreated celiac disease, perhaps a gene was turned on, which caused the increased production of red blood cells. 

Merry Christmas!

[cristiana]

Perhaps we could try to keep this thread updated as I'm hoping if there are any other similarly affected celiacs they will get in touch and who knows, someone might look into it in more depth.  I'm going to ask my gastroenterolgist when I see him for my review if he's ever seen any other cases.

Thanks, Scott, and a very Happy Christmas to you, too! 

 

[Posterboy]

On 12/25/2020 at 2:41 PM, Scott Adams said:

Interestingly, even though I had villi blunting at diagnosis I didn’t have anemia, and in my case have had this high red blood cell issue since around the same time period that I was diagnosed with celiac disease, so over 25 years. I recently had my blood B12 levels measured and they were way above normal due to long-term supplementation, and B12 can increase red blood cell production (as well as the other supplements I’ve eliminated). 

I did another phlebotomy a couple of days ago, and need to do another in a month, to get back into the range my doctor wants me to be at (under 45 on the Hematocrit). I hope my supplement changes with the cpap will finally keep things in check.

I do think you have a good point and it’s possible that my body did somehow adapt to my untreated celiac disease, perhaps a gene was turned on, which caused the increased production of red blood cells. 

Merry Christmas!

Scott,

 I have been busy with other things.....

I saw this thread awhile ago and am only now getting back too it....

I also have Hereditary Hemochromatosis.....so I am in a similar place....

So that set off my research "Gene" and I knew I could find something that could help me.....and hopefully you too!

Think about taking you some 50/3 Zinc/Copper tablets or maybe some Cod Liver oil.....

Zinc and Copper need to be in the right ratio in the body and is best to take them together.

The Cod Liver Oil is a good source  of Vitamin A and D.....Vitamin A has a connection with Copper/Iron.

I prefer the Cod Liver Oil as a capsule.....because in liquid form....it can be have a  "strong medicine" taste too it.....let's say an "acquired taste".....

Also Vitamin D insufficiency has been tied to Hemochromatosis....

I was not surprised I was low in Vitamin D....but I almost had to beg him to test my Vitamin D levels...

Entitled Low Serum 25 Hydroxy Vitamin D in Hereditary Hemochromatosis Relation to
Iron Status

https://www.gastrojournal.org/article/S0016-5085(85)80001-9/pdf

Here is the research on Copper entitled "Iron excess treatable by copper supplementation in acquired aceruloplasminemia: a new form of secondary human iron overload?"

https://ashpublications.org/blood/article/114/11/2360/25848/Iron-excess-treatable-by-copper-supplementation-in

I hope this is helpful but it is not medical advice.

Posterboy,

[Scott Adams]

I'll look into this, but my diagnosis isn't hemochromatosis, which was ruled out. Excess red blood cells is my issue...thank you!