CELIAC DISEASE AND POLYCYTHEMA VERA

[cristiana]

Thanks for posting this Posterboy.  Do you mind me asking, do you have to have blood taken?

Personally I don't have excess iron (in fact it is currently at 8 ) but I do seem to have high hemoglobin but at the moment it is just over high normal.  My doctor says I shouldn't feel tired with low iron levels if my hemoglobin is "very good" - as he it puts it, trying to be positive!  But I do feel tired. And I seem to get times when I have loads of symptoms which could be ascribed to iron anemia like itchy skin, sore tongue, restless legs, hair loss, so I do wonder if he is right about that?

[Posterboy]

Cristiana and Scott,

I just started with my first treatment of Blood lettings aka Phlebotomy.

I also started my research to find out what the doctor's know or don't know at least and exceed if if I can.

I found out I might be low in Copper which is causing not only my RBCs to be elevated but my WBCs too!

See this research entitled "Polycythemia in Patients With Hereditary Hemochromatosis: Real or Myth?"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6522237/

And see this research entitled "Copper deficiency as a cause of neutropenia in a case of coeliac disease"

https://pubmed.ncbi.nlm.nih.gov/27635061/

My elevated white blood cells is probably from copper deficiency.....since treating Celiac's with Copper helps elevated White Blood counts....

They track WBCs as a progression of t he disease but really it is a nutrient deficient going undiagnosed.

See this research entitled "Persistent Leukocytosis as a Marker for Disease Progression"

https://www.oncologynurseadvisor.com/home/cancer-types/myeloproliferative-neoplasms/persistent-leukocytosis-as-marker-for-disease-progression-in-pv/

Cristiana the same can/could be said of your Low Iron levels....

It is a sign of low Riboflavin.....also known as Pellagra Sine Pellagra....

You might also have a thyroid problem.....I did and it got better after supplementing with Vitamin B2.

Here is the research on it entitled...

"Suboptimal Biochemical Riboflavin Status Is Associated with Lower Hemoglobin and Higher Rates of Anemia in a Sample of Canadian and Malaysian Women of Reproductive Age"

https://pubmed.ncbi.nlm.nih.gov/31318024/

The Fatigue is probably from a Thiamine Deficiency.  Taking Magnesium Glycinate with Benfotiamine (fat soluble B1 found in the diabetic section) with meals and can help your fatigue and you should begin to feel an improvement after the first month if this is your underlying problem.

Here is the best article I have ever read on Thiamine and you should read it all when you get the chance.

It is entitled (Thiamine) The Overlooked Vitamin That Improves Autoimmune Disease And Autonomic Dysfunction

https://awaken.com/2021/02/the-overlooked-vitamin-that-improves-autoimmune-disease-and-autonomic-dysfunction/

Cristiana I also wrote a Posterboy blog post about why Celiac's should supplement with Thiamine IF you haven't read it I believe it will help you!

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

As always, “Consider what I say; and the Lord give thee understanding in all things” 2 Timothy 2:7, this included.

Posterboy by the Grace of God,

[cristiana]

Hello Posterboy

Thank you so much for taking the time to write all this down for me, and to share the links.  Not being scientific I have to admit I need to look at them in greater depth, and probably with a medical dictionary, but I am very grateful!

I've managed to get my B12 levels tested but I don't think my other B's have been tested, apart from folic acid which was just over the acceptable level.  My B12 was rock bottom at diagnosis but has improved with supplementation, so it wouldn't surprise me if other B's were low.

I haven't been referred to a haematologist yet.  Not sure when that will happen but if I am referred I guess they will find out then the exact cause. I have read Polycythemia can be secondary.  As I don't drink or smoke that rules those causes out, but I think I read somewhere it can have something to do with the kidneys.  I could be wrong about this.  Strangely I have a distant cousin with Polycythemia Vera - odd as it isn't supposed to be hereditary.    I've had sticky blood since my teenage years.  I got phlebitis in my late teens, but I think because I subsequently became anemic it masked the problem.  I've had more thyroid panels than hot dinners (well, not quite!) and they remain normal; I had an u/s in August and my thyroid nodules, something I do have, are stable.

It is all so mystifying but I'm just so grateful for this forum, it's so good to meet other people who are travelling a similar path.

Thank you so much for your help.  I hope your phlebotomy goes well.

[Posterboy]

On 2/9/2021 at 11:02 AM, cristiana said:

Hello Posterboy

Thank you so much for taking the time to write all this down for me, and to share the links.  Not being scientific I have to admit I need to look at them in greater depth, and probably with a medical dictionary, but I am very grateful!

Cristiana,

Thanks for your kind reply!

I always try and share good research when I can find it!

I find/have found if it helps me.....it will/could help others.

I just wish more doctors' knew about Vitamin deficiencies......and I didn't feel like I had to do it all on my own by myself all the time.

Here is some research that I came across on Copper that might help and Scott  with your Iron problems....

https://medicalxpress.com/news/2007-07-iron-copper-relationship.html#:~:text=Iron and copper relationship is studied. Hereditary hemochromatosis,body iron levels resulting from any medical condition

IF you have Iron problem.....YOU have a Copper problem and the doctor's don't know it....because they haven't study nutrition......enough to know it....

They are not nutritionists they are (MEDICAL) doctor's.....so they study medicines so they can give medicines to you to mask your Vitamin Deficiencies....

IN FACT Vitamin deficiencies like Iron Deficient Anemia, Low Vitamin D or Low Thiamine levels etc......are often the first signs of a Celiac diagnosis....or low Zinc or Copper levels etc....producing disease symptom's...

https://lesliebeck.com/articles/2019/07/04/vitamin-deficiencies-may-be-the-only-sign-of-celiac-disease

In fact most Celiacs have 2x to 3x the risk of Vitamin deficiencies compared to the general population.....

I just don't get why they think....supplementation is bad for Celiac's

quoting from the article...

"When the researchers compared the just-diagnosed celiac patients to NHANES participants, they found some big differences in nutrient levels. Zinc was deficient in 59.4% of those with celiac versus 33.2% of controls; copper was low in 6.4% of celiac patients versus 2.1% of controls, folate was low in 3.6% of celiac patients versus 0.3% of controls and vitamin B12 was low in 5.3% of celiac patients versus 1.8% of controls. 

Among celiac patients, iron was low in 30.8%, but there were no controls with iron measurements to compare to. And contrary to traditional assumptions about celiac and thinness, weight loss was seen in just 25.2% of patients diagnosed with the disease."

Supplementation is a complimentary process.....if the symptom's get better.....it was the Vitamin Deficiency causing the problem in the first place....

See this Eon Nutrition article about how they argue SIBO is from a Thiamine deficiency....

https://www.eonutrition.co.uk/post/got-sibo-here-s-why-you-need-to-get-your-thiamine-status-checked

quoting from their summary so you don' have to read it all.....(it is a little technical) but good read none the less....

quoting

"Hopefully after reading this, the audience can appreciate how SIBO is particularly relevant to thiamine metabolism. The purpose of this article was to describe the how SIBO and gut-related issues can potentially lead to thiamine deficiency, and why people suffering from this condition would do well to test their thiamine status.

In the case long-term deficiency, thiamine repletion may actually go a long way toward fixing the initial problem. This is because thiamine deficiency might not only be a consequence, but also a cause of SIBO in the first place.

In the next article, I will be explaining how chronic thiamine deficiency can be causally linked with SIBO and other gut dysfunction."

I think this is also happening in Celiac's too! because we know Low Thiamine level's Can Thin our Villi.

This relationship has already been studied in Chrons' patients!  It is time this is studied in Celiac's!

https://www.researchgate.net/publication/336824541_Erythrocyte_transketolase_deficiency_in_patients_suffering_from_Crohn's_disease

Where they note quoting their summary/conclusion....

"Conclusions: Vitamin B1 deficiency aka Thiamine is part of the Crohn's disease manifestation in moderate-to-severe active patients."

Cristiana I hope we all feel better soon!

Supplementation is how I have helped myself, the Lord being my help......I hope you will consider it for yourself.

2 Timothy 2:7 As always, “Consider what I say; and the Lord give thee understanding in all things” this included.

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

Posterboy by the grace of God,

[cristiana]

Thanks, Posterboy - it is so kind of you to take the time to share all this.  It is so true what you say about supplementation.  I saw a fantastic dietitian after my diagnosis and she was a real advocate, but my doctors only told me to try iron supplementation, and that ended when my haemoglobin went too high.   

[Posterboy]

Cristina and Scott,

If you continue to have high Iron levels and hemogloblin levels......try some Turmeric.

I have taken it in the past.....not knowing it's connection....but since I have this condition too I have begin studying what else I can do....my ferritin levels went down at the time....but I didn't think much about it at the time.....now I  know there is a connection......

Turns out Turmeric can help lower ferritin and iron levels in those who have artificially high levels...

See this research on it entitled "Iron Deficiency Anemia Due to High-dose Turmeric"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6414192/

You will probably have to play with it a little to see how much you need and adjust up or down accordingly....

Might be better than giving them blood every month etc....

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

Posterboy,

[Scott Adams]

That's interesting, and I've been taking turmeric for a couple of years now. Perhaps I'll increase how much I'm taking to see if it helps.

[Posterboy]

Scott,

How long did it take for you to get your Ferritin levels down to "Normal Levels" so your "Blood Draws" could get it down low enough to only have to do it periodically.

The doctor (IMO) has been less than communicative to me....about how long I will have to do this...

I have heard anywhere form 12 to 18 months....

My first draw went down 75 units of Ferritin....was your "draw down" .....steady and predictable....

Or did it fluctuate month to month....

Thanks,

Posterboy,

[Scott Adams]

I just happen to have had a blood draw yesterday, and to clarify, I've not been formally diagnosed with anything, although many things like hemochromatosis, various lymphomas, lukemia, etc. have been eliminated. I should be avoiding iron rich foods, but don't always do that. I typically need to do phlebotomy every 1 to 1.5 months, and my doctor recommends I do this when my Hematocrit is above 45%.

[cristiana]

Scott and Posterboy

Sorry to interrupt but do you guys get itchy skin as a symptom of your blood levels?  I get this a lot and for years I though it was due to low iron (which I still think it may be as my iron is still very low) BUT I understand it can also be a symptom of high haemaglobin - in my own case, possible polycythemia.

Cristiana

[Scott Adams]

No worries...it's a forum discussion...jump in any time!

I do not get itchy skin, but do feel like the higher values (I think my record is around 54%) makes me feel like I have a dull headache, and a general feeling of being unwell. After phlebotomy that unwell feeling goes away, as does the headache.

[Posterboy]

3 hours ago, cristiana said:

Scott and Posterboy

Sorry to interrupt but do you guys get itchy skin as a symptom of your blood levels?  I get this a lot and for years I though it was due to low iron (which I still think it may be as my iron is still very low) BUT I understand it can also be a symptom of high haemaglobin - in my own case, possible polycythemia.

Cristiana

Cristiana,

I have read the same thing.....but no my skin has never itched from it....(I have itched some in the shower with I am told might be a sign of HH)....don't know for sure though???

I have gotten horrible night sweats.....which are (some) better....not completely gone though....

Hopefully as my Ferritin levels drops...the  night sweats will be gone....

For your Low Iron Levels try taking some Riboflavin.....

It has been shown to be associated with Low Iron levels in women...

I think taking it and (zinc and selenium)  helped my thyroid problems and my Low T at the time....

It is a great down regulator of inflammation in the body....

Take it with meals or 2x (which ever is easier).....the longer it takes to turn your urine Yellow the lower you are in it....

I used to have Angular Cheilitis (Leaky Lips).....and I searched for years.....trying to find the cause....

And when I found Riboflavin the Lord being my help (because Angular Cheilitis is a very embarrassing condition).....all these things got better at once....

My Low T got better, my bad anxiety, my Thyroid problems and my "Leaky Lips"....

I don't talk about Riboflavin too much but it really helped me. (So many deficiencies, so little time lately)....you have to focus on one or two or three Vitamin/Mineral deficiencies at a time) like Magnesium, Thiamine and Niacin for example))

Being Low in Riboflavin is known as Pellagra Sine Pellagra or Pellagra without or with Limited Skin Issues essentially...

Pellagra will cause foul and horrible Skin Issues where Pellagra Sine Pellagra generally doesn't and what happened to me!

Read this Posterboy blog post and it explains how and why many Celiac's are low in many Vitamins and Minerals...

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/

Here is research on anemia in women as  biological marker of a Riboflavin deficiency....

https://pubmed.ncbi.nlm.nih.gov/31318024/

See also this great article on Riboflavin...

https://www.ncbi.nlm.nih.gov/books/NBK470460/

quoting

"Riboflavin also helps convert tryptophan to niacin, which activates vitamin B6. Some preventable diseases manageable with adequate riboflavin are anemia, cataracts, migraines, and thyroid dysfunction. Riboflavin is necessary for normal development, lactation, physical performance, and reproduction.[1][2]" (Low T in my case)

And this one very similar but a little more about Riboflavin...

https://www.ncbi.nlm.nih.gov/books/NBK525977/

quoting again...

"Although clinical features of some vitamin deficiencies are similar and often coexist, the following are more common features of riboflavin deficiency are as follows[6]:

Lips become red, dry, fissured, or ulcerated.
Angular cheilitis is often a feature
The tongue gets dry, atrophic, magenta red or sometimes blackish
Seborrheic dermatitis may be present on the face
Scrotum or vulva may get hyperpigmented resembling zinc deficiency
Conjunctivitis can occur
Sore throat
Fatigue"

I had all the signs....but doctor's don't study Vitamin's today.....because they are too busy studying drug interactions....which is a common cause of hospital admissions today...

I have never meet a Vitamin that didn't help me in some way....

Oh by the way....anxiety is often one of the first signs of Riboflavin deficiency and I had that too! in Spades at the time  as part of my depression!

See this UVA article about a Riboflavin deficiency aka Vitamin B2.

https://www.urologyofva.net/articles/category/healthy-diet/4388519/understanding-riboflavin-vitamin-b2-deficiency-in-celiac-disease

Quoting again...

"Deficiency of riboflavin is normally part of a multiple-nutrient deficiency involving other B vitamins. However, because it can be produced by beneficial intestinal bacteria (flora), the deficiency may not cause symptoms as severe as other vitamin deficiencies, provided the flora is healthy.

Riboflavin deficiency symptoms involve problems with digestion, the mouth, eyes, skin, nervous system, strength, and blood cell production.

Nervous tissue damage. Anxiety may be first symptom.

Riboflavin may play a role in the prevention and/or treatment of carpal tunnel syndrome, migraine headache, rosacea, and vaginitis."

Sorry I got a little long winded there....but I think taking some Riboflavin will help your Low Iron levels....

The UVA article is one of the best I have read on a Riboflavin deficiency

quoting once more.....

"Adequate supplies of thiamin in the body can help increase levels of riboflavin. However, very high levels of thiamin intake can cause the loss of riboflavin in the urine. Riboflavin plays an important role in making other nutrients fully available, especially iron, zinc, folic acid, niacin (vitamin B3) and vitamin B12.

Riboflavin is considered safe because excess vitamin is passed out in the urine. (And why It will turn your Urine a Bright (NEON) Yellow when your body has absorbed enough)  There is no documented toxicity."

2 Timothy 2:7  “Consider what I say; and the Lord give thee understanding in all things” this included.

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

I need to stop for now....

Good luck on your continued journey!

Posterboy by the Grace of God,

[cristiana]

I've been meaning to report this for some time ...  my last haemaglobin test and hematocrit test were within normal levels, first time for a while.  Before the blood test I'd pretty much given up taking B12 supplements.  But another thing was that I'd had my Covid jab about three weeks beforehand.

I was talking to my cousin a few weeks back who had the same experience with the Covid jab.   He has polycythemia vera and his levels went down after his jab.  However, the effect was shortlived - lasting just a month. He's got to have some blood drawn again soon.

Just wondered if Posterboy and Scott found this after their Covid jabs?

Edited June 25, 2021 by cristiana

[Scott Adams]

Interestingly mine was lower than normal when checked about 3 weeks ago, which was after my 2nd vaccine. 

[cristiana]

14 hours ago, Scott Adams said:

Interestingly mine was lower than normal when checked about 3 weeks ago, which was after my 2nd vaccine. 

So interesting.  I wanted to post this in case anyone "out there" in the medical world might find it useful.  A new treatment?! 

Anyway, I wonder what the reason might be?  Looking forward to finding out what Posterboy's experience was.

[Scott Adams]

I’m due to be retested next week and will post the results. Of course a single test could just be coincidence.

[Scott Adams]

My most recent test showed my Hematocrit at 43, so no need to donate blood this time, which is the 2nd time in a row it was lower than normal. My RBC was still high at over 18%.

[cristiana]

1 hour ago, Scott Adams said:

My most recent test showed my Hematocrit at 43, so no need to donate blood this time, which is the 2nd time in a row it was lower than normal. My RBC was still high at over 18%.

So interesting.... does that happen often i.e. twice in a row?  My next blood test isn't until September but if I end up having the autumn Covid booster around that time I shall be interested to see what's happened!

[Scott Adams]

I think it has only happened a couple of time before over the last 20 years, so it is a bit unusual.

[DrSuzy]

Chronic inflammation can upregulate  IL-6 cytokines and upregulate  jak stat pathway that directly activates  Erythopoetin   (blood making hormone). Celiac disease most definitely leads to a chronic inflammatory response - it will activate this entire pathway. Any means to stop chronic inflammatory response will be helpful in turning off this immune activation pathway. Even an infected tooth can be contributing to a chronic inflammatory response. A local infection or local area of inflammation can contribute to systemic signaling...

[Scott Adams]

Welcome to the board! I'm not sure if you're trying to explain the later vaccine speculation in this topic, or the high red blood cell issue that some of us have discussed. I've been gluten-free for over 25 years, so it would be doubtful that my eating gluten before my diagnosis would trigger my high red blood cell condition for life. My guess is that my condition is totally separate, and possibly genetic in nature.

[Sledwards]

On 7/21/2021 at 9:50 AM, Scott Adams said:

Welcome to the board! I'm not sure if you're trying to explain the later vaccine speculation in this topic, or the high red blood cell issue that some of us have discussed. I've been gluten-free for over 25 years, so it would be doubtful that my eating gluten before my diagnosis would trigger my high red blood cell condition for life. My guess is that my condition is totally separate, and possibly genetic in nature.

 Has this topic fallen off the radar? I have had two serum tests a month apart and my red blood count is above normal but not extremely. My Alkaline Phosphate also slightly over normal. My serum blood also showed I am sensitive to gluten and I did as a child have dermatitis herpetiformis (unknown back in the 1970s). So, I've been panicking because my "Sherlock Google Holmes" went on a frantic search. Resulting in about a dozen possible diagnosis with the worst being a chronic blood cancer. My doctor appointment is in a couple of days and I'm bringing my spouse to help make sure the proper tests are ordered. Is anyone else here going through something similar?

 

[plumbago]

I'm confused about what exactly the topic is. Slightly above or below normal is usually nothing to be concerned about. The hematocrit (percentage by volume of red blood cells in your blood) range for males is 42-52% (generally) and 37-47% for females. Hemoglobin 14-18 g/dL males and 12-16 g/dL for females (generally speaking). One or two percentage points above may just signal some dehydration.

Often, people with (usually uncontrolled) celiac disease do have elevated liver enzymes - but they normalize on a gluten free diet.

[trents]

Just a little terminology adjustment is in order here. Dermatitis herpetiformis, or DH, is associated with celiac disease and not gluten sensitivity. NCGS (Non Celiac Gluten Sensitivity) is not the same as celiac disease. Celiac disease is often referred to as gluten intolerance. Celiac disease is the only know cause for DH. A certain percentage of celiacs (about 20%) will have liver inflammation. Perhaps this is the cause for your elevated alk phos.

[cristiana]

@Sledwards  I wouldn't worry unduly if the numbers are only slight, and don't keep rising - some people run at higher levels.  Good to run past your doctor but as plumbago says, it could just be that you were dehydrated.

@plumbago    I think this topic was started by someone trying to find an association between polycythemia vera and celiac disease.  I was interested in this as after my diagnosis my haemoglobin levels rose steeply. My local hospital is also a training hospital and I recall my gastroenterologist saying to a student who sat in once, "We're watching her for polycythemia" when he was perusing my notes.  I asked him about this and he said to me that in time I might be put onto aspirin and referred to a haematologist. 

However, it seems that since I last posted on this thread that my blood seems to have settled around or just below the higher levels you mention for females.  I notice these levels are higher if I'm tested when I'm dehydrated, so I try to keep as hydrated as I can before a blood test, but my gastroenterologist continues to steer me away from iron supplements because I run at these higher levels.

Interestingly, though, I now have a type of phlebitis following surgery, this is for the third time since I was a teenager, so I do wonder if there is a connection and I've had these high levels all my life, bar the time I got very anaemic around the time of my coeliac diagnosis.