Osteoporosis diagnosis post celiac diagnosis (along with questions about copper/zinc)

[cnazrael89]

Hello everyone! I'm a 33 year old Male and I was diagnosed with Celiac disease via blood and duodenal biopsy. My endoscopy was on 10/24/22 and during my follow up visit a ton of labs were ordered, a dietician consult (haven't had my appointment yet) and a DEXA scan was ordered. Much to my surprise my B vitamins were within normal range besides my B6 was elevated. I was having a lot of symptoms of B1 deficiency which I did discuss with my GI provider and they said it was fine to be taking my B complex along with Benfotiamine despite my blood level results being within normal parameters. So I feel better about that situation now but still having the pitting edema in the lower legs along the shin bone up and down. I am still having numbness/decreased sensation in certain areas of my forearms as well. My headaches initially went away with going gluten free on the 24 of October but just came back again yesterday and has persisted ever since yesterday. I am still having consistent joint pains that haven't let up much at all since going gluten free. (I do understand I am very early in my healing process as my biopsies showed moderate to near complete Villous atrophy). Hoping some of these above mentioned things do get better over time as I begin to heal.

My Iron studies all looked good as well as my Vitamin A, E, Carotene, PT/INR, homocysteine, and MMA were all in normal parameters.

However, I was deficient in my copper level and my zinc was elevated double the upper limit of normal. My GI provider reached out to me today and told me to begin supplementing copper 1.5mg daily and "stop taking zinc supplements, if I'm on any". I have never taken any zinc supplementation in my life that I can remember. I did a little reading and it seems like copper and zinc are antagonists of one another. If that is the case, it seems likely that if I'm low in copper, my zinc will increase? If I were actually taking zinc, there is potential for my copper to be low due to that but that is not the case for me. So, in theory if I take a copper supplement it should help my zinc level come down since they are antagonists of one another?? Any insight on this topic would be helpful.

My vitamin D was insufficient range and my GI said I could safely be taking 5,000 units of vitamin D for now, which I am doing.

Now...on to the DEXA scan... I had my scan this morning and the results came in through my online portal but my primary care doctor actually called me this afternoon to tell me I have Osteoporosis with a "T score of -2.6 in my Left total hip, -2.6 in my left femoral neck, and -1.8 T score in my lumbar spine" and the report says "Bone density is within the osteoporosis range based on WHO classification" So they said definitely be taking my Vitamin D 5,000 units every day, add 500-1000mg of Calcium supplementation, and take the copper supplement. Are there certain types of calcium and copper that I should take that are better absorbed than others? They also want me to make a follow up to discuss different medication options for my osteoporosis. They said I can take a pill form, injection, or IV infusion. Does anyone have any experience with any of these medications for osteoporosis? Is it necessary to get put on a medication for it if I am healing my gut and taking the appropriate supplementation they've recommended? Any first hand insight or information about this would be greatly appreciated! I definitely want to do all that I can to restore my bone health but don't want to do anything that might make matters worse. Thanks for reading!

[knitty kitty]

@cnazrael89,

Glad to hear you're doing well!

Celiac malabsorption can cause copper deficiency.  Elevated B6 and zinc are common in copper deficiency.  They will normalize once the enzymes utilizing copper get into production again. 

Zinc is in denture cream and in zinc oxide used for Sun protection and diaper rash.

Did you get a number for your Vitamin D level?  Taking such a small amount 5000 units, it won't hurt to take it twice a day.  The sooner your level is in the 80's nmol/ml, the better you will feel.  Vitamin D will help with those achy joints. 

I take Calcium Citrate-Malate, but you have to find what works for you.  Talk to your nutritionist about balancing calcium and magnesium.

How much benfotiamine are you taking daily?  You may need to take more and see if the edema resolves with a higher dose.  

Perhaps @cristiana can help us with osteoporosis information.

 

[cnazrael89]

@knitty kitty

As always thank you for such great info! It helped solidify some of my thoughts and things I had come upon while reading about copper deficiency. I found on Amazon, Copper Glycinate 2mg (brand "Pure Encapsulations"), I was having a hard time finding any 1.5mg tablets so I just bought the 2mg strength. 

As far as the vitamin D is concerned; It initially was 27 ng/mL on 10/13/22. I started myself on 10,000 units prior to my GI appointments and I had been taking 10,000 units up until 11/4/22 when another Vitamin D level got checked incidentally with a lump of other labs and it had come up to 42 ng/mL. Since the GI mentioned just doing the 5,000 units/day I backed off to that dosage and have been on that for about 1 week but have been feeling like the 10,000 units I was feeling better. (I don't know if it is related to the vitamin D or not though as so much has changed at the same time).

I have been waking up every morning and taking a zyrtec, omeprazole (GI says I should stay on this for 3 months...I don't know if I agree 100% but they said because I have chronic Duodenitis I should take this...), I take a B complex 50 and Benfotiamine 300mg. After lunch time meal I have been taking my Vitamin D 5,000 units and a second Benfotiamine 300mg. Around bedtime I take Magnesium glycinate 350mg.

I just ordered Calcium citrate 1,000mg which I plan to take when I take my vitamin D as it sounds like they play nice together. I just need to figure out when I can take copper now.

I went from no medications daily to taking so many supplements/meds in such a short time...It is a bit overwhelming and has been a learning curve for sure! Thank you for your help! I cannot stress enough how much it has meant to me! I feel so much more equipped to talk to the doctors about stuff and have really been able to advocate for myself better than I would have otherwise been able to!

[cristiana]

Hi 

7 hours ago, knitty kitty said:

@cnazrael89,

Perhaps @cristiana can help us with osteoporosis information.

 

Hi there

I'm afraid I'd love to be able to help more but I've not had a diagnosis of this yet - do you know something I don't, @knitty kitty?!  😀
 

But so glad you've had the DEXA scan.  It is one of the reasons that when people from the UK contact the forum wondering whether to bother with a formal coeliac diagnosis that I try to encourage them to do so, because our own NHS state health care system will provide this free of charge service as standard follow up for diagnosed coeliacs.

I agree with knitty kitty on increasing your vitamin D dosage.  I've just been advised to do likewise by my gastroenterologist.  Presumably your levels will be checked regularly as part of your ongoing treatment?

Cristiana

[cnazrael89]

@cristiana

I'm glad that I was able to get my DEXA scan too! They actually had a cancellation the day I was scheduling mine and got me in the very same day even (wasn't supposed to be until after January originally, so that was really nice). 

I asked my GI about retesting labs after a period of time and they got back to me today saying 3-6 month intervals for lab checks for now to monitor the supplementation. My GI wanted to see me for my follow-up appointment within a 3 to 6 month period after initial diagnosis to recheck celiac antibodies anyways so I think I could just get my other vitamin/mineral labs rechecked at that appointment. I think that would give my body the time it needs to start healing and get some of my nutritional labs corrected on supplementation.

I do have the option to get my vitamin D checked at any time through the hospital lab as they have "health screening" labs I can just pay a fee to get drawn whenever. So that one I can check on my own whenever! Good safety net! Thank you for your reply! Take care!

[knitty kitty]

Thanks, @cristiana!   Just saw you were online and you always have such good input!  

I'm so glad you're increasing your Vitamin D.  

My Vitamin D was in the single digits.  Once I started supplementing Vitamin D 3 capsules, I had the strangest craving to eat them like m&m's.  My body knew what it wanted.  So, I took lots of them throughout the day.  It got my level up quickly and I felt so much better.  

My doctor had prescribed synthetic Vitamin D 2, but my body didn't like this form.  I was reluctant to take them.  I did research and found D3 is the naturally occurring form that is better assimilated into the body, hence the m&m reaction.  

@cnazrael89

You're doing great!  So glad you've got all the bases covered!   Thanks for the updates!

P.S.  I take the same brand of copper glycinate.

Edited November 17, 2022 by knitty kitty
Added post script

[Rogol72]

It's funny you say that @knitty kitty about Vitamin D and the body craving it!. I backed off Vitamin D over the summer months as my level was at 124. I recently started back on a BetterYou Vitamin D3 spray which has 3000ius per spray. I felt like taking two sprays on one or two occasions which is too much 6000iu. I got my bloods done last week and my level was at 101. I must be able to maintain a higher level for some reason.

It's amazing how we become tuned in to our bodies vitamin and mineral needs!

 

[knitty kitty]

@Rogol72,

I read a research paper that studied the Vitamin D levels in Pacific Islanders living traditionally.  Their Vitamin D levels were between 80 and 125.

So, you're in the right ballpark!

 

[Rogol72]

Excellent! Thank you... that has just made my day😀. Living on the 52nd parallel, sunshine is  scarce. I have osteopenia, what I'm really interested in is whether or not that can be reversed through nutrition. Collagen seems to play a big part in bone building, along with sufficient mineral intake and Vitamin k2. Any thoughts from anyone on this subject would be welcome.

[Posterboy]

Rogol 72 and Knitty Kitty Et Al,

I saw the discussion about high Vitamin D......and how much is too much.

Chris Masterjohn is an experienced researcher and he says you should take Vitamin D and Vitamin K together to keep from getting Vitamin D toxicity from getting too much Vitamin D at one time.

Here is the summary article about this topic

Entitled "Is Vitamin D Safe? Still Depends on Vitamins A and K! Testimonials and a Human Study"

https://www.westonaprice.org/is-vitamin-d-safe-still-depends-on-vitamins-a-and-k-testimonials-and-a-human-study/#gsc.tab=0

Here is the pure research article about this topic.

Entitled "Vitamin D toxicity redefined: vitamin K and the molecular mechanism"

https://pubmed.ncbi.nlm.nih.gov/17145139/

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

Posterboy,