Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):
  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Hemachromatosis and Low Vitamin D


Posterboy

Recommended Posts

Posterboy Mentor

To NNowak, Knitty Kitty et al,

On a different thread the topic of Hemachromatosis came up....

I have the same problem so...I wanted to see if anybody had any thought/feedback on how they supplement with Vitamin D....

It seems they are connected conditions....on more than one occasion I have become low in Vitamin D ....and after a little sleuthing it seems they might be related....and I wanted people feedback on how to best take Vitamin D...

Here is the research I found on the topic recently...oh and I have bronchitis right now that also might be related to Low Vitamin D.

https://www.ncbi.nlm.nih.gov/pubmed/19415722

https://www.bmj.com/content/356/bmj.i6583.long

And what was most intriguing to me is...I live near a major road and I found out air pollution could explain why I keep getting low in Vitamin D....does anybody else have experience with getting low in Vitamin D multiple times...and do you think air pollution had anything to do with it???

https://www.ncbi.nlm.nih.gov/pubmed/27645613

TIA for for your feedback and insight...I know none of this medical advise...I just want people to share their experience and opinion about how best to get over this lingering Vitamin D deficiency as it might also help my blood sugar problems too.

Posterboy,


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



NNowak Collaborator

Posterboy,

My functional medicine doctor ran an in depth panel of my thyroid and found Free T4 to be very high. Hashimoto’s was already ruled out, so Grave’s is being investigated. There is a connection with elevated Ferritin, high FT3 and FT4, low D and low B12/Folate. I don’t live near a busy road, in fact I’m blessed with country living. So I cannot speak to that in relation to our shared symptoms. It is possible that adrenals are deficient and related.  I’m heterozygous for H63D, so my GI said it’s not hemochromatosis. Although my sister has the same gene and is diagnosed as having hemochromatosis by a hematologist in a different state. My grandmother also had it, along with Celiac. 
 

I see my FM doctor late February for a review of all my tests. I’ll discuss the research with her so we can have a better understanding.

 

Thank you for the articles and discussion!

cyclinglady Grand Master
cyclinglady Grand Master
2 hours ago, NNowak said:

Posterboy,

My functional medicine doctor ran an in depth panel of my thyroid and found Free T4 to be very high. Hashimoto’s was already ruled out, so Grave’s is being investigated. There is a connection with elevated Ferritin, high FT3 and FT4, low D and low B12/Folate. I don’t live near a busy road, in fact I’m blessed with country living. So I cannot speak to that in relation to our shared symptoms. It is possible that adrenals are deficient and related.  I’m heterozygous for H63D, so my GI said it’s not hemochromatosis. Although my sister has the same gene and is diagnosed as having hemochromatosis by a hematologist in a different state. My grandmother also had it, along with Celiac. 
 

I see my FM doctor late February for a review of all my tests. I’ll discuss the research with her so we can have a better understanding.

 

Thank you for the articles and discussion!

Did they run thyroid antibodies tests?  

NNowak Collaborator

She ran TPO antibodies for Hashimoto’s. This particular test catches 70% of Graves. The antibody test more specific to Graves is TRAb catching 90%. My sister has Hashimoto’s. I recently discovered my deceased father had his thyroid removed in his 20s due to hyperthyroidism. His autopsy at age 55 revealed growths on his thyroid as well as cirrhosis. I don’t know if he had hemochromatosis or elevated ferritin due to hyperthyroidism. He had severe anxiety, but also had a very high stress job. The HLA DQ2 gene came from him, whereas my mother passed down the HLA DQ8 gene. 

I agree with the questionable efficacy of supplements as stated in the research article you passed along.  There is no substitute for nature, nutrition and sunshine  My stomach simply won’t tolerate vitamins so I’m in search of sunshine on my bare skin - without sunscreen.  We cannot absorb the sun we need with all the sunscreen we apply  my health was so poor through this past summer, I wasn’t absorbing anything.  I was truly shocked to find I was deficient in D after all the weekends of travel lacrosse tournaments I attended with my son, and horse shows through September with my daughter.  
 

GI health is key to everything we are discussing.  We must heal our GI system first and foremost.  There are many podcasts with functional medicine doctors that discuss the problems associated with leaky gut.  Histamine intolerance is another facet to this, along with SIBO.  The Functional Medicine Show with Dr. Carri speaks to this in several podcasts with different professionals.  Women Wired for Wellness also discusses these issues. Very interesting and logical.

 

cyclinglady Grand Master

My mom has Graves.  I much prefer Hashimoto’s!  I had a few thyroid swings and it is easier to be hypo than hyper.  My Mom has permanent eye damage as a result.  If you have Graves, get treatment which may include surgery.  Her ferritin levels are normal.  

My enlarged thyroid and nodules (20 years) dissipated after I went gluten free.  Unfortunately, my thyroid is permanently damaged and I have to take thyroid replacement.  

I am not sure leaky gut can be corrected yet.   Celiacs seem to produce too much zonulin “protein gate keepers “ which may contribute to  “leaky gut”.  

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3384703/

https://m.youtube.com/watch?v=wha30RSxE6w

 

Posterboy Mentor
10 hours ago, NNowak said:

 I was truly shocked to find I was deficient in D after all the weekends of travel lacrosse tournaments I attended with my son, and horse shows through September with my daughter.

NNowak et Al,

I was too was shocked.....to be low in Vitamin D...because I had taken the proper co-factors....try taking some Magnesium if you haven't yet....Glycinate (anytime) Citrate with meals....being low in Magnesium will/can make you low in Vitamin D...it acts like a "dead bolt" on a door...taking Vitamin D unlocks the first lock but without Magnesium co-factor the deadbolt stays locked up in a non bioavaible state...this connection was studied a few years ago...

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3765911/ they say in their conclusion

"Our preliminary findings indicate it is possible that magnesium intake alone or its interaction with vitamin D intake may contribute to vitamin D status. The associations between serum 25(OH)D and risk of mortality may be modified by the intake level of magnesium."

So I shouldn't be low in Vitamin D because because I take Magnesium Glycinate unless air pollution could be breaking this cycle for me...here is a nice article about other co-factors for Vitamin D synthesize bye the body that might help you NNowak...

https://www.purenootropics.net/cofactors-for-vitamin-d/

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

Posterboy,


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



  • 1 month later...
Posterboy Mentor

NNowak et Al,

I think I might of found out why I have been having issues with iron overload IE hemachromatosis.

I had caught up on this nutrient (or I thought) I had once so I wouldn't need to again....but I finding that is apparently not true.

https://pubmed.ncbi.nlm.nih.gov/7766029-selenium-deficiency-as-a-cause-of-overload-of-iron-and-unbalanced-distribution-of-other-minerals/

they say quoting "These results suggest that Se deficiency may cause a secondary overload of iron and unbalanced distribution of other minerals."

Brazil nuts are  high in Selenium or you can take or grow the Chinese Herb Astragulas it naturally compounds Selenium in the plant itself.

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

Posterboy,

NNowak Collaborator

Hey Posterboy!

This is certainly interesting!  Are you donating blood on a schedule to reduce your ferritin?  My levels have been bouncing, so my doc is tentatively thinking it’s due to systemic inflammation. The verdict is in with my target areas - first, my guts need to heal enough to be able to absorb meds. My thyroid is being addressed as well as my adrenals. In 2 months we hope to address my SIBO. As the malabsorption heals, and inflammation goes away, we will recheck all my levels. If the ferritin remains elevated I’ll have to donate. 
 

What have your physicians advised through the course of your elevated ferritin?  

Posterboy Mentor
On 2/21/2020 at 7:08 PM, NNowak said:

What have your physicians advised through the course of your elevated ferritin?

On 2/21/2020 at 7:08 PM, NNowak said:

In 2 months we hope to address my SIBO. As the malabsorption heals, and inflammation goes away, we will recheck all my levels. If the ferritin remains elevated I’ll have to donate. 

NNowak,

My ferritin is not at an action level yet.....but they blamed it mostly on genetics because I am of an age that it develops in most people but I finding inflammation like you mentioned might be the trigger instead.

My levels have been down in the past....and it was I eating more Brazil nuts....I actually had a craving for them recently before I found the Selenium research....I guess I will have to listen to my body more....

As for the SIBO find you some Benfotiamine a special fat soluble B-1....it could help your SIBO here is nice article about Thiamine's role in SIBO.

https://www.eonutrition.co.uk/post/thiamine-deficiency-a-major-cause-of-sibo

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

Posterboy,

Posterboy Mentor

NNowak,

If I remember right (and are not confusing you with someone else) you said you lived in rural MI?

Much of MI is very low in Selenium naturally and eating too much food from your garden can make you low especially if your diet does not include a diverse food supply from outside MI.

Here is a map of Selenium deficiency soils in the US.

http://www.bing.com/images/search?view=detailV2&ccid=CISSD1aJ&id=15952BA7F5B45B2D61084EB52E32969DCFF16424&thid=OIP.CISSD1aJDVekvyFjmFkaTQHaE8&mediaurl=https%3a%2f%2fdrkhorsesense.files.wordpress.com%2f2014%2f01%2fsoil-selenium.webp&exph=720&expw=1080&q=selenium+deficieny+in+US&simid=608046916268132516&selectedIndex=7&ajaxhist=0

I  hope this is helpful.

Posterboy,

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Scott Adams replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      IBS-D vs Celiac

    2. - Scott Adams replied to Amy Barnett's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Question

    3. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      how much gluten do I need to eat before blood tests?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,321
    • Most Online (within 30 mins)
      7,748

    James Minton
    Newest Member
    James Minton
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Scott Adams
      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that you carry HLA-DQ2.2 means celiac disease is absolutely possible, even if it’s less common than DQ2.5, and many people with DQ2.2 present later and are under-diagnosed. Your hesitation to reintroduce gluten is completely understandable — quality of life matters — and many people in your position choose to remain strictly gluten-free and treat it as medically necessary even without formal biopsy confirmation. If and when you’re ready, a physician can help you weigh options like limited gluten challenge, serology history, or documentation as “probable celiac.” What’s clear is that this wasn’t just random IBS — you identified the trigger, and your body has been very consistent in its response.
    • Scott Adams
      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid multivitamin with essential nutrients in a readily absorbable form. MaryRuth's Morning Multivitamin w/ Hair Growth – Adds beauty-supporting ingredients (biotin, B vitamins), also gluten-free and easy to take. New Chapter Liquid Multivitamin and New Chapter Liquid Multivitamin Orange Mango – Fermented liquid form with extra nutrients and good tolerability if you prefer a whole-food-based formula. Nature's Plus Source Of Life Gold Liquid – Premium option with a broad spectrum of vitamins and plant-based nutrients. Floradix Epresat Adult Liquid Multivitamin – Highly rated gluten-free German-made liquid, good choice if taste and natural ingredients matter. NOW Foods Liquid Multi Tropical Orange – Budget-friendly liquid multivitamin with solid nutrient coverage.
    • catnapt
      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
    • trents
      Under the circumstances, your decision to have the testing done on day 14 sounds very reasonable. But I think by now you know for certain that you either have celiac disease or NCGS and either way you absolutely need to eliminate gluten from your diet. I don't think you have to have an official diagnosis of celiac disease to leverage gluten free service in hospitals or institutional care and I'm guessing your physician would be willing to grant you a diagnosis of gluten sensitivity (NCGS) even if your celiac testing comes up negative. Also, you need to be aware that oats (even gluten free oats) is a common cross reactor in the celiac community. Oat protein (avenin) is similar to gluten. You might want to look at some other gluten free hot  breakfast cereal alternatives.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.