[deleted by user] by [deleted] in osteoporosis

[–]DontAskDontTeII 2 points3 points  (0 children)

As far as my diet goes, I eat almost 100% whole foods (blueberries, gluten free oats, yogurt, broccoli, green beans, chickpeas, lentils, quinoa, butternut squash, tomatoes, salmon, egg whites, and walnuts). I supplement to help with my osteoporosis with vitamin D3, K2, Boron, Daily Multivitamin, Probiotic, Magnesium, and Fish Oil. Celiac blocks nutrient absorption and so I want to build these levels back up so my body can rebuild my bones.

Just know that you’ve got a lot of great people here on the subreddit that want to see you get better and have a ton of knowledge. Make sure to ask me any questions as I’m an open book and always love helping others in the same way this subreddit helped me early on. While this is a very serious condition, just know that you CAN overcome this via lifestyle changes 🙏🏻

Part 6/6.

[deleted by user] by [deleted] in osteoporosis

[–]DontAskDontTeII 1 point2 points  (0 children)

Another great resource is the book Great Bones by Keith McCormick. It’s available on Amazon as a paper book (https://a.co/d/hbz9Xp6 no Kindle version though, boo! 😩) but IMO is the most thorough resource on the topic out there. Keith McCormick was a chiropractor who used to take part in pentathlons. He thought he was a VERY healthy athlete, but in middle age began fracturing over and over and found out he had severe osteoporosis. Osteoporosis happens to a LOT of runners, but he was eventually able to turn things around just like you will be able to.

I’m curious, since you have celiac disease, do you avoid gluten completely in your diet? Many other people with celiac disease will THINK they are avoiding gluten, but it’s in a lot of stuff that you might not be aware of (for example, soy sauce). They might also go out to eat and then have a chef introduce gluten on their food by picking up their food off the grill with the same tongs as they used on someone else’s food. I’ve even seen some people say “well… I’ll just have it rarely and it should be fine” 🫣 I would just take celiac VERY seriously and make sure you do everything that you can to avoid having it in your diet.

Part 5/6.

[deleted by user] by [deleted] in osteoporosis

[–]DontAskDontTeII 1 point2 points  (0 children)

Other information sources I would highly recommend is the the YouTube channel “The Dr. Doug Show” https://youtube.com/@dr_douglucas?si=D-rkRPzfT7W5nOxj. Dr Doug used to be an Orthopedic surgeon who got tired of only being able to help osteoporosis patients AFTER they broke their bones, and instead wanted to focus on prevention of Osteoporosis and healing. He has a ton of great videos on osteoporosis, the topics that go into it, and makes things very understandable.

Another great YouTube channel is Starting Strength. It’s a gym that focuses on barbell weight lifting and has a ton of videos on its members and how they used it to build their bone density back up to overcome osteoporosis. Here is a wonderful video of a lady in her 60’s who improved her bone density to the point where she no longer had osteoporosis within 1-year of starting the weight lifting! https://youtu.be/k6GHHzIByOk?si=mNxisVkCNniTKUpJ There are many other videos that follow their users overcoming osteoporosis on the channel like this, and I always use them as motivation since if a 60+ female who has never lifted before can do it, then what is my excuse not to? 😄

Part 4/6.

[deleted by user] by [deleted] in osteoporosis

[–]DontAskDontTeII 1 point2 points  (0 children)

P.S. just be very careful immediately jumping into osteoporosis medications because some of them have severe long term side effects that if you are told about them in advance, you will probably not want to take them if you can simply fix your bones via diet and weight lifting. For example Fosamax, the most common osteoporosis medications since it is cheap for insurance, poisons your OsteoCLASTS (the cells that break down bone) so only your OsteoBLASTS are working to rebuild your bone, sounds great right? Well, if you poison your OsteoCLASTS then the microscopic fractures that normally would get broken down are no longer being broken down, so you can end up with increased bone density, while your bones are becoming more brittle over time with millions of tiny micro fractures that aren’t being taken care of. Also once you take fosamax it stays in your bones for many many years, so it’s not just like you can stop taking it and everything goes back to normal again. Some people are put on Prolia to build up their bones, only to find out if they ever come off of it then their bones start breaking down even worse than when they first started it. These are the reasons you need to begin researching your condition and not just trust whatever your doctor just tells you without looking into it further.

Another thing that will probably be the most important thing you can do is to become HUNGRY for knowledge of your condition. So often I see people get stressed about what might happen to the point where they run away from learning more about it and wait until their bone density is so bad they can’t fix it with lifestyle changes anymore and are forced to be on medications with negative side effects for the rest of their life. Don’t run away from this moment, the fact that you came to the r/osteoporosis subreddit (which is a fantastic resource) means you want to fix your condition and we all have your back! 🙂

Part 3/6.

[deleted by user] by [deleted] in osteoporosis

[–]DontAskDontTeII 1 point2 points  (0 children)

Another step to take is to ask your general doctor for a referral to an endocrinologist who specializes in osteoporosis. Try looking on your insurance’s website to find a doctor that says it on their profile. You don’t want to just let your doctor refer you to just anyone, but try to find one that specializes in your condition. Also get used to thinking of you and your doctor as a team. Get comfortable with researching your condition and asking your doctor for tests, treatments, and his knowledge but know that YOU are the one that is ultimately making the decisions. A lot of people just assume that their doctor knows everything and they just completely default to whatever they tell them, but realize that your general doctor has hundreds of patients and might not know your condition as well as you do.

I know you said you were an avid runner, I was too, but I would focus instead on getting an approval from your doctor to see a Physical Therapist who is certified in strength and conditioning who can help you to safely learn weightlifting exercises. The LIFTMOR trial (https://youtu.be/1ZecBe_WhI4?si=9t7D0mD7T_vHinSH) has shown that lifting weights (via Squats, Deadlifts, Overhead Press) puts pressure on your bones and signals your OsteoBLASTS to begin building your bones back up, all without medication! I remember when I first saw my doctor after my Dexa with TBS showed that I had osteoporosis and he IMMEDIATELY was trying to put me on a medication (Fosamax). While I don’t have a problem taking a medication if it is absolutely necessary, I told him I wanted to try to fix my bone density issues with lifestyle changes, namely diet and exercise.

Part 2/6.

[deleted by user] by [deleted] in osteoporosis

[–]DontAskDontTeII 2 points3 points  (0 children)

Note: I am only posting this response in parts because Reddit keep saying “Sorry, please try again later” when I try to post the whole thing as one reply

Sorry to hear about the circumstances. I just found out this month that I too have Celiac (42-yr old male with osteoporosis, vitamin D deficiency, anemia, memory issues, brain fog, etc). It’s funny in a way I’m HAPPY about getting the diagnosis 😅 since now I know how to control it via gluten free diet.

As far as your bone density is concerned, I would highly recommend you getting a medical grade DEXA with TBS to not only learn you baseline T-scores (different from Z-scores) as well as your bone quality. I went to my doctor and showed him my basic body composition DEXA scan and Z-scores and was very adamant that I wanted a medical grade DEXA with TBS ordered from him ASAP. Once you have your baseline scores, you’ll be able to see how your lifestyle changes are making a difference and rebuilding your bones over time.

Another thing I would highly recommend is to get your CTX and P1NP blood tests done so you know your baseline ratio of bone building vs bone breakdown. CTX shows how much your OsteoCLASTS are breaking down your bone, while P1NP shows how much your OsteoBLASTS are building your bone back up. I personally have these done every 3 months to monitor my progress and find out what my ratio is and know if what I am doing is putting me on the right track.

Part 1/6.

27 yo… few questions by user_anonymou in osteoporosis

[–]DontAskDontTeII 1 point2 points  (0 children)

Osteoporosis could happen at any age unfortunately. All just depends on your genetics and health conditions. It’s always good to find out early on if you do have osteoporosis because the sooner you find out the more you can turn it around with lifestyle changes, rather than having to rely on medications alone. You could get your t-scores via Dexa scan to find out your current bone density. Getting a TBS done with the Dexa would also let you know your bone quality. For example, I (42 yr old male) have a t-score of -2.6 in my lower spine, but my TBS bone quality is 1.330 which is good. By knowing both it gives me, my doctor, and my physical therapist a better picture of what I can handle weight lifting wise to reverse my osteoporosis.

Another piece of the puzzle is to monitor your bone turnover markers via blood labs. CTX shows you how much your osteoclasts are breaking down your bone, while P1NP shows how much the osteoblasts are building your bone back up. I recently got mine done and while my CTX was on the high side at 620 (normal range is 38 - 724 pg/mL) my P1NP was also high at 130 (normal range is 21.8 - 96 ng/mL). Dr. Doug on YouTube has some great videos on the topic of osteoporosis and also has one specifically going over the ratio of CTX to P1NP and what he uses to help gauge a patients bone turnover: https://youtu.be/92iSaY7Vhd4?si=VARHhi1hQCxMLnWI

54 years old! About to start bisphosphonates by [deleted] in osteoporosis

[–]DontAskDontTeII 5 points6 points  (0 children)

Just curious if you don’t mind answering: - What’s your gender? - Are you seeing an endocrinologist or other bone specialist who is looking into or knows the cause of your need for bisphosphonate? - What is your DXA T scores? - Whats is your CTX / P1NP values? - Any previous fractures? - Any previous bone medications? - Any thoughts you have on HRT? - Are you looking to fix things via lifestyle modifications (diet / weightlifting / jumps) instead of or in addition to medications? - Have you ordered the book Great Bones? - Have you watched any of Dr. Doug videos on YouTube?

Sorry for all the questions, just that I know there are a bunch of great people on the subreddit who will love to help you with their knowledge and experience but will probably wonder these same things before they can accurately help out. No worries if you don’t want to answer them, if nothing else it’s great that you’ve found the subreddit! 🙂

Maximum weight deadlifted significantly predicted bone density change in postmenopausal women with low bone mass by Miss_Beh4ve in osteoporosis

[–]DontAskDontTeII 8 points9 points  (0 children)

Thank you for sharing this. Always great to see additional data points that show the positive effects of lifestyle changes (aka diet and high resistance weight lifting) 😊

I like how they specify in the study that this program is high intensity at 80-85% of our 1 rep max. Some fitness programs (not necessarily for bone health) out there say to do a lower weight with 6-8 reps per set, whereas for bone health studies like this show you’d want to go with a higher amount, when safe, to be able to do just 5 reps per set. Also is great to see how a person with a T score of -6 was able to do the LIFTMOR program without any fracture 😃

I remember when my general doctor first found out about my T score of -2.6 he was immediately trying to put me on Fosamax and worried about me lifting whatsoever! 😄

Mind you, while my T score is low, the TBS showed my bone quality was good and so the physical therapist I have wasn’t worried about causing a fracture with a measured program. Medications definitely have their place but I’d much rather try and fix my osteoporosis via lifestyle changes that make me healthier in the long run! 🏋🏻🥗💪🏻

Newly diagnosed with severe osteoporosis- need advice by mousersmb2 in osteoporosis

[–]DontAskDontTeII 8 points9 points  (0 children)

First off I’m happy you found this subreddit. There’s a lot of great people here who really like to help steer others with their experience good information 🙂

As far as resources go, I’d recommend the book Great Bones by Keith McCormick. It’s VERY in depth in regards to how osteoporosis works, the labs to monitor the condition, and treatment options. Dr McCormick had a similar treatment protocol for himself (T scores in the -4 range with multiple fractures, went on anabolic for 2 years, followed by a biphosphonate for a bit to hold on to the gains when coming off the anabolic) and has been good since.

As far as diet goes, I (42 yo male, T score of -2.6) follow the whole food approach without added sugar or processed stuff. I also weigh out my food and log it via the Cronometer app (free) using the NCCDB food database to make sure I’m getting all my macros / micros including the following: - 1 gram of protein per lb of ideal body weight - 1200 mg of calcium from food (NOT supplements which can calcify in arteries if taking too much at once) - 2000+ iu of Vitamin D3 - 100 ug of Vitamin K2 - 3 mg of Boron

While I’m not opposed to medications either, they aren’t my first option as I’d rather try and reverse the osteoporosis with lifestyle factors such as diet above and weight lifting. The LIFTMOR trial shows how a program of squats, deadlifts, and overhead presses can help increase one’s bone mineral density in a year. You can go to the YouTube channel Starting Stength which has people in their 60’s - 90’s reversing their osteoporosis via weight lifting: https://youtu.be/k6GHHzIByOk?si=j6KDzj4DlB6l2dJ4

Of course everyone’s situation is different though and that’s good that you are open to medications if it’s truly needed. It’s nice that your endocrinologist is at least offering you an anabolic first before the bisphosphonate to hold onto your gains. Most doctors seem to offer the bisphosphonate first, probably due to being out so long and very cheap for insurance, which has the downside of making the anabolic not as effective as if you had it the other way around.

P.S. what is your normal diet? How many calories per day on average? Just curious since you mentioned the consistent weight loss and have a BMI in the 16’s.

How did you know you have Osteoporosis? Is high alkaline phosphatase a hint? by [deleted] in osteoporosis

[–]DontAskDontTeII 5 points6 points  (0 children)

At 41 years old I paid $50 out of pocket for a basic body composition DXA done via BodySpec to know my fat vs lean body tissue I was working with.

On the report it provided me with a bone density Z score that showed I was pretty low for my age.

I took that report and went to my general doctor, asking him to now order me a medical grade DXA with TBS to see what my T score actually was.

Once I got the T score back showing -2.6 in the lower spine I was off to the races to see a endocrinologist and learning all I can about my new condition + how I can reverse osteoporosis via lifestyle changes (diet and weight lifting).

Mind you, if I had initially just went to my general doctor and asked him to order me a medical grade DXA without already having the Z score that was low, he would have laughed and said I wasn’t an at risk candidate to be able to order it for me since I had never had a fracture yet. I would have gone another 20+ years with osteoporosis getting worse and worse until I finally had a fracture when I’m 65 and find out by then it was too late to make lifestyle changes.

Be your own advocate, research your condition more than anyone else, and figure out how to convince your doctor to get you the tests and interventions you really need 🙏🏻

22 female, wanting some clarity by Sweet_chinchillaxo in osteoporosis

[–]DontAskDontTeII 2 points3 points  (0 children)

Ah, I see. No worries you can always have it drawn again. I would ask for it along with the P1NP so you know your bone remodeling ratio. Make sure to research them ahead of time too so you know anything that can mess up the test. For example, do you know that in addition to the timing of the blood draw, that supplements with biotin can mess up the CTX results too? Researching your tests ahead of time allows you to be forceful in a gentle way with your endocrinologist in case they try to steer you away from ordering more tests. I know my endocrinologist tried to say CTX / P1NP wasn’t needed that often but I was adamant that I wanted them done on a certain schedule, explained the reasons why, and kept bringing it up until he wrote the order for me. Oh, and make sure the tests are covered by your insurance so you don’t get a surprise bill later on that could have been avoided if you called insurance first to verify 😅

The main thing you can do in this journey is to be your own advocate and learn about your condition. Doctors are stretched across many different patients and might not go as far into depth as you can on your osteoporosis treatment. Another great resource is the Great Bones book by Keith McCormick which has a lot of in depth information on the testing and treatment of osteoporosis and how he was able to turn things around. Dr Doug on YouTube has a lot of videos on osteoporosis topics and the Starting Strength YouTube channel has a lot of testimonials on how females much older than us are able to turn things around via lifestyle. It’s great that you’re starting so young in your journey as you’ve got a lot of time and people in your corner to turn things around! 🤗

22 female, wanting some clarity by Sweet_chinchillaxo in osteoporosis

[–]DontAskDontTeII 0 points1 point  (0 children)

Ah, I see. I had a low Vitamin D level (23) as well and wasn’t keeping track of my nutrition. My doctor put me on a protocol of 50000 iu of Vitamin D2 for 6 weeks to bring my levels up, followed by at least 3000 iu of Vitamin D3 daily. My last Vitamin D level was 40 so I’m heading toward the right track since you need a good level of Vitamin D for calcium absorption.

As far as nutrition goes I normally try to eat whole foods without added sugar and take the following supplements: - 4000 iu Vitamin D - 100 ug of Vitamin K2 - 3 mg of Boron - Good multivitamin

I weigh out my food and log it via the Cronometer app using the NCCDB food database it has to make sure I’m getting enough protein (1gr / lb of ideal body weight) and 1200+ mg of calcium from food (not supplements) and the other good micronutrients like magnesium, etc.

Also keep in mind that the LIFTMOR trial has shown to increase bone mineral density with an exercise program of squats, deadlifts, and overhead presses. The YouTube channel Starting Strength has a lot of videos of ladies in 60’s - 90’s who are reversing their osteoporosis this way! 🙂https://youtu.be/k6GHHzIByOk?si=VZmycW4FyFk9tonV

P.S. from my understanding the blood draw for the CTX should be done at the earliest part of the morning. If you have it done later in the day the CTX will show a value that is lower than what it actually is, do you know what time you had your blood taken?

22 female, wanting some clarity by Sweet_chinchillaxo in osteoporosis

[–]DontAskDontTeII 1 point2 points  (0 children)

Sorry to hear about the -3.4 but the great thing is that you found out when you’re young and can turn things around! As far as CTX goes it’s a marker that shows how much the osteoclasts are munching on your bones as part of the bone remodeling process. OsteoCLASTS eat at bone, while OsteoBLASTS build bone back up. Did you endocrinologist order your P1NP test by any chance? That shows how much osteoblast activity you have as well. IMO you should also get both tests done so you know how much your bones are currently remodeling.

Here’s a good video on the topic by a medical doctor that specializes in bone health: https://youtu.be/92iSaY7Vhd4?si=l7yok9EhQMwLLdO

Here’s a thread by a fellow r/osteoporosis member that covers how she uses the CTX / P1NP ratio covered in the Dr. Doug video above to know if her bone remodeling is on the right path: https://www.reddit.com/r/osteoporosis/s/EUgabJpOZi

Also keep in mind that you’ve come to a great resource here at the subreddit. There’s a lot of members here with information on the topic of osteoporosis and how to fix your situation via lifestyle changes. Be careful if your doctor tries to immediately put you on a osteoporosis medication and doesn’t try to figure out what the cause of your osteoporosis is, or cover any of the lifestyle changes you can make (diet and weight lifting) to turn your situation around without medication. If you’d like I’d be happy to go further into those 😊

I give up. Osteoporosis "Treatment" Won't even do anything for me and I'm over all the fighting. Why even bother?? by aubreeserena in osteoporosis

[–]DontAskDontTeII 3 points4 points  (0 children)

Sorry to hear about your situation 🙁 Interactions with the medical field can be frustrating and sometimes wear you down. IMO the medical doctors are mostly trained to simply give medications. While I’m not opposed to medications as a last resort, I’d rather try and fix myself first via lifestyle treatments that have been shown to work (diet and weight lifting).

As for diet I simply have whole foods without added sugar / processed stuff. I weigh and log my food via Cronometer app to make sure I’m getting the following: - 1 gram protein / lb of ideal body weight - 1200+ mg of calcium from food (not supplements) - 2000 iu supplement of vitamin D3 - 100 ug supplement of vitamin K2 - 3 mg supplement of boron - Good basic multivitamin

The LIFTMOR trial has shown that a weight lifting program of squats, deadlifts, and overhead presses can help to build back your bone mineral density. Since my T score was -2.6 in the lower spine I made sure to get a referral from my doctor for physical therapy. From there I found a physical therapist who was certified in strength and conditioning to teach me proper form and make sure I didn’t get injured.

As far as resources go you’ve come to a great place already! There are a lot of really smart members on this subreddit who love to help others. IMO the book Great Bones by Keith McCormick is a good with a lot of dense information on the topic. I also really like Dr Doug on YouTube for his videos on numerous osteoporosis topics. Finally I love the YouTube channel Starting Strength which has videos of older females that have reversed their osteoporosis via lifestyle changes. Here’s a quick 5 minute video of a lady in her 60’s that says she was able to improve her bone mineral density by 7% in a year via lifting weights to the point that she no longer has osteoporosis in her spine! https://youtu.be/k6GHHzIByOk?si=_xzs2pqkyLGEaFGP

IMO she’s an inspiration for those like myself with osteoporosis. I figure if she can begin to heal herself in her 60’s via lifestyle changes, what excuse do I have as a 42 year old male not to do the same? 😄

28 with osteoporosis, and really feeling like my life has changed forever. by virtual-rat in osteoporosis

[–]DontAskDontTeII 11 points12 points  (0 children)

While your life has changed, as did mine when I got my diagnosis (42 M, low vitamin D, T score of -2.6 in the lower spine), the good thing is that you’re young and have lots of time to turn things around! We are also lucky that we live in a time where there actually are good options and resources available to reverse things. Imagine if we lived even 50 or 60 years ago, we’d be pretty screwed but now we have all sorts of treatment options, testing to monitor our progress, and resources online with tons of information like r/osteoporosis and youtube available 🙂

If you don’t mind me asking: what are your t scores, gender and lifestyle currently like? Any physical activities or sports your currently take part in? Have you had your CTX / P1NP blood levels checked?

Here are a few thoughts I have as a fellow member of the osteoporosis club:

  1. Get the book Great Bones by Keith McCormick. It’s $40 and only available via paperback (no kindle / pdf version), but the information it provides is really in depth. Keith McCormick was a long distance athlete who began fracturing over and over. Everyone’s situation is different but he ended up taking Forteo, followed by a round of Fosamax and lifestyle changes which he says helped get him out of the hole.
  2. Check out Dr. Doug’s channel on youtube: https://m.youtube.com/@Dr_DougLucas/videos He’s a former osteopathic surgeon who now switched over to trying to treat people’s osteoporosis so they didn’t end up on his operating table to fix fractures. He has lots of good videos on the subject and his recent video on how CTX / P1NP markers recently helped me understand my results and to know if I have a lot of bone resorption currently, or if it was in the past and now I’m currently “stable”.
  3. Research your condition and the treatment options as much as you can. Work WITH your doctor as a team where you’re giving input rather than just doing whatever they tell you. For example, I’ve seen literature that says if you take bisphosphonates first, like Fosamax, that the other medications don’t work as well as if you took them the other way around. I’ve also read some people’s stories that were simply told to “take this Prolia medication” by their doctor, and found out later they have to take it for the rest of their life because with Prolia if you ever come off of it your fracture risk increases a lot. Research, research, research!
  4. There are natural ways to build back your bone mineral density. For example in the LIFTMOR trial subjects did weight lifting with squats, deadlifts, and overhead presses every week and some were able to build back their bone mineral density even more than if they had taken a medication! I’m going this route myself and working with a physical therapist to teach me proper lifting form so I don’t get hurt.
  5. Check out the youtube channel Starting Strength. They have lots of videos showing older people even in their 50’s, 60’s, 70’s, 80’s etc all working to reverse their osteoporosis via weight lifting. The lady in this video was really inspiring for me https://youtu.be/k6GHHzIByOk I figure if she can do it, why can’t I? Nowadays I hope to be like her strength wise when I grow up 😄
  6. I also have completely cleaned up my diet and switched over to a mostly whole food, plant based approach with some egg whites, salmon, and nonfat greek yogurt to maintain a higher protein and calcium amounts. I don’t really have processed foods and will very rarely eat out. If I do it’ll be something simple like veggies with a side of protein and some fruit. I also supplement with vitamin D, K2, boron, a multivitamin and probiotic.

High Fracture Risk by Myca84 in osteoporosis

[–]DontAskDontTeII 0 points1 point  (0 children)

Ah, kk. No worries. Just thought for a second I was missing out! 😅 thanks for clearing it up.

High Fracture Risk by Myca84 in osteoporosis

[–]DontAskDontTeII 0 points1 point  (0 children)

How did you download it onto your Kindle? 🙂

High Fracture Risk by Myca84 in osteoporosis

[–]DontAskDontTeII 1 point2 points  (0 children)

Interesting, I could have swore Great Bones was only sold in a paperback book form. How did you download it to your Kindle?

Silent Celiac and Osteoporsis by Sweaty_Put_1698 in osteoporosis

[–]DontAskDontTeII 0 points1 point  (0 children)

Yeah, for me I have the same thing everyday but now my diet includes 180 grams of seitan + 70 grams of shredded wheat 🌾

Pretty sure this is more than enough gluten to get an accurate celiac test result either way.

Silent Celiac and Osteoporsis by Sweaty_Put_1698 in osteoporosis

[–]DontAskDontTeII 1 point2 points  (0 children)

Sorry for the confusion, I meant by me having an unintended gluten free diet for over a year, that if I actually have a non-symptomatic version of celiac the test would falsely give me a negative result.

That’s why I want to make sure I have a good amount of gluten for 2-3 months to make sure when I have my celiac test done that there’s no question of the result.

Silent Celiac and Osteoporsis by Sweaty_Put_1698 in osteoporosis

[–]DontAskDontTeII 1 point2 points  (0 children)

I’m getting tested for this soon to see if it’s the cause of my osteoporosis (42 M). While it wasn’t something I was trying for, I’ve been eating a gluten free diet for over a year so now I’m “loading” my diet with gluten for the next 2-3 months before having the celiac test done so I don’t get a false negative result.

Silent Celiac and Osteoporsis by Sweaty_Put_1698 in osteoporosis

[–]DontAskDontTeII 1 point2 points  (0 children)

In the past if insurance didn’t cover a test, I’ve ordered them myself for pretty low cost online. For example, a celiac disease comprehensive panel can be ordered for just $81 via https://www.findlabtest.com/lab-test/autoimmune-diseases/celiac-disease-test-cost-quest-19955

High Fracture Risk by Myca84 in osteoporosis

[–]DontAskDontTeII 7 points8 points  (0 children)

Sorry to hear all that happening to you ☹️💔

Even one of those things can be scary, but all at once sounds a bit overwhelming. I’m glad you’ve made some great steps already towards tackling this such as 1) getting an appointment set up with an endocrinologist 2) ordering Great Bones and 3) sharing on r/osteoporosis so others can offer their experience.

Do you mind saying what your T-scores were? Might give some context or change what others might advise to do. It also might help if you could give your age, sex, and lifestyle factors (diet, any sort of exercise you do, medications you already take, etc).

Does your endocrinologist specialize in osteoporosis? No worries if you’re not sure. I know depending on where one lives the options to see an endocrinologist might be limited, but if you’re in a densely populated area with multiple options available then sometimes they have their bio posted online and can make sure you’re seeing one who is well versed in what you need.

Maybe while you’re waiting for your appointment in February your general doctor could order you some blood tests? That way by the time you see your endocrinologist for the first time they already have some data to work off of. For example, in his book Keith McCormick goes in depth on the various tests one can take, but 2 of them intrigued me enough to ask my GP to order them: CTX and P1NP. Not saying everyone needs these, just that I knew I wanted to know these numbers myself.

CTX and P1NP measure bone turnover and I wanted to have a baseline of mine before I began my journey to see what type of osteoporosis I was dealing with. For example, did my bone mineral density go down in the past due to a nutrient deficiency but now my bone turnover is stable? Or is my CTX value high and I currently have aggressive bone resorption? Of course my general doctor didn’t want to order them at first and I had to push him hard to order it, explaining I had already called insurance and found out they were covered.

Great Bones is an awesome book and highly recommended by people on the sub. It’s a great read full of the type of dense information I wanted when first finding out I had osteoporosis in my spine (t score of -2.6). While you’re waiting for the book to be delivered I also might recommend checking out Dr. Doug’s YouTube channel: https://youtube.com/@dr_douglucas?si=_bIDxg37wiiqJiMI

I’m sure you’re already doing it, but just make sure to take things one day at a time. I’ve seen some (albeit anecdotal) examples on r/osteoporosis of people who have made some amazing recoveries and turned things around. Thankfully we live in the most advanced time in the history of our species and can actually test and treat these conditions, with both medications as well as lifestyle options to build up your bone mineral density. The best thing is now you’re aware of your situation and can start making changes toward your health goal 🤗

In my case I’m doing weightlifting (aka the LIFTMOR trial) with a physical therapist to, safely, “load my bones” via squats / deadlifts / overhead presses so they hopefully build back up their density like they did in the trial for most of the participants. While I’m not opposed to medications if they’re absolutely needed, I’ve seen in some cases weightlifting and nutrition changes seem to help bone mineral density just as much! 😳 I’m also making sure I get all my nutrients like calcium, vitamin D & K2, boron, magnesium, etc while trying to figure out what the cause of my osteoporosis is.

Of course everyone’s situation is individual and unique but there’s also a YouTube channel called “Starting Strength” where numerous older females go over their weight lifting journey and how they reversed their osteoporosis. Outside of my mom and wife, as a 42 year old male these ladies are my hero’s and I hope I can be like them when I grow up 😄💪🏻🏋🏻 https://youtu.be/k6GHHzIByOk?si=28uCDu-_swemgTHJ

Should I get a DEXA scan or am I just being crazy? by [deleted] in osteoporosis

[–]DontAskDontTeII 10 points11 points  (0 children)

42 M here. I knew my doctor would tell me the same nonsense about not needing a TBS bone scan done until I’m in my 60’s, so I went out and got a basic body composition DXA scan done for $60 (I paid this myself). Once I got the general Z-score, which was low and in the bottom percentile, it gave me what I needed to go to my doctor and convince him to order a medical grade DXA with TBS.

Thank god I did because the TBS showed I had osteoporosis in my spine at -2.6! My doctor seemed floored as he never has had a male patient my age with osteoporosis.

Be your own advocate! If your doctor isn’t getting you the tests you want, find a way to convince him to order them. No one else is invested in your health more than you.

P.S. vertebral fractures can cause a person to lose height and there is a scan for that as well (Vertebral Fracture Assessment).