Osteopenia A Year And A Half After gluten-free

[CajunChic]

I just found out I have osteopenia after breaking my fourth bone in my foot in 3 years. I broke my sesamoid and third metatarsal 3 years ago on my left foot, broke the exact same bones on my right foot about 3 months ago. My gastro was concerned so he ordered a bone density scan. My gyn had to order it because he couldn't, don't understand that.. She told me to take caltrate and I'd be fine. My gastro told me if the test showed anything, he recommends an endocrinologist to monitor this and my hypoglycemic episodes that he thinks will lead to diabetes.

He's already told me he's not confident in himself to monitor manifestations of celiac, in fact he doesn't know what else to do for me with celiac. He hasn't seen many celiacs in his practice. There aren't any celiac specialists anywhere near me.

My question is should I do all monitoring with an endocrinologist? I was only marsh 1 at dx so I don't understand how I have all this going on a year and a half gluten-free. My hair was super thin, but now growing back. My nails shred right off my nailbed and won't get better. I've had my thyroid tested several times and nothing has ever showed up. Any advice?

[cyclinglady]

Per my GP/PCP doctor, if you have had breaks, the dx of osteopenia is redefined as osteoporosis. I had vertebrae fractures (doing nothing) three months into my celiac disease diagnosis. I was a Marsh Stage IIIB, but really what does that mean? I probably have sections where I have complete villi blunting. The intestinal wall is vast. The same might be applicable to you.

Did you fracture while running? I would recommend staying off your feet in terms of exercise for a year. I did that. I needed time to heal and to prevent future fractures (like a hip!).

After the fracture pain diminished, I walked instead of ran and did water aerobics. I did not swim as that really strains my back (too much rotation, etc.). I got off my bike (that was really hard to do). I asked for hormone replacement therapy since I was just going through menopause (four months without a period) instead of taking bone drugs. I added calcium supplements, along with viatmin D and magnesium, zinc and copper. All of this with the blessing of my doctor.

Within a year, I was back on my bike. I had no more back pain. Yippee!

My next bone scan is July 2015. We will see how it goes. I am off the HRT for now. I hope it was enough to bump up my bone density and give me time to allow for intestinal healing. Now I should be able to absorb my supplements better.

I do not work with my GI. I seemed to know more about celiac disease that he did though I give him credit in diagnosing me. Anemia was my only symptom at the time.

My GP also monitors my thyroid and diabetes, but I have a meter and keep tabs on my diabetes myself. I really eat to my meter. Type 1diabetes is strongly linked to celiac disease. I have not had any lows so I am pretty confident that I am type 2. My doctor will test for GAD antibodies if I show any wild changes.

Your endo should check for parathyroid issues besides your hypoglycemia issues.

In any case, avoid any more fractures as best you can!

[CajunChic]

I thought since I didn't have much damage, and I'm so far on the diet, I wouldn't have these issues. But I didn't think of patchy spots.

I haven't exercised in a few months due to other issues I was dealing with prior to the fractures, so I got my first fracture from normal activity. I am on my feet constantly, however. I teach little ones : ) About a month into wearing an immobilization boot, my second fracture happened. While immobilized!! I'm just not sure how to prevent more fractures and I'm so ready to get back to working out.

I don't have follow up care on anything, and have to request almost everything for myself based on what i learn here and what i research. I even had to explain my gene test, that i ordered by myself, to my doctor!! Lol I guess finding an endo to keep up with everything may be best.

Thank you for sharing your experience. I'm glad you were able to heal and get back to riding!

[RollingAlong]

Do they check your vitamin D levels?  You will need vitamin d, and k2, and protein (particularly glycine and collagen) to build bone. There's a surprising amount of protein in the "matrix" of bone.  

 

Open Original Shared Link

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Blood glucose stability will help tremendously with the healing process.  You will get a lot of bang for your buck with effort in this area.  Do you have a feel for what's driving the hypo episodes?  
 
Inflammation seems to increase your fracture risk:
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tea (green or black) may help, very unlikely to hurt.

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I think the endo is your best bet at this point.   Best wishes, please keep us posted.  

[CajunChic]

I has mt vitamin levels checked this summer. My vit D was .08 above the normal line and calcium was on the normal line. So my then gyn said I didn't need any supplements. I have no plans of a follow up as of now. I guess I'll have to request it later.

I haven't found what's causing the hypo. I can have 2 episodes in one day, then not again for a few weeks. It's crazy.

Thank you for the info and advice! I'll be researching a good endo to follow up with.

[jumpingjuniper]

Sorry to hear about your multiple broken bones!

 

I would recommend trying another GI, or else getting very proactive with yours by bringing in your own research. But it sounds a bit like he doesn't want to expand his knowledge on the subject. Is there a local celiac meet up? Maybe they have ideas for a GI.

 

Wishing you the best of luck!

[Sammykins]

I has mt vitamin levels checked this summer. My vit D was .08 above the normal line and calcium was on the normal line. So my then gyn said I didn't need any supplements. I have no plans of a follow up as of now. I guess I'll have to request it later.

I haven't found what's causing the hypo. I can have 2 episodes in one day, then not again for a few weeks. It's crazy.

Thank you for the info and advice! I'll be researching a good endo to follow up with.

Hello,

I have reactive hypoglycmeia and osteopenia. 'Reactive' meaning that the hypos are caused by hyperglycemic episodes. In order not to have a hypo, I need to ensure I eat sufficient quantities of protein and/or fat with each meal and snack, not go to long without eating, not eat too much carbohydrate and especially simple carbohydrates at one time, and be very careful with fueling/refueling physical activity.

There's a specific test they do for this which involves giving you a high glycemic 'meal' then testing your blood glucose level numerous times over the course of a number of hours. If you have RH it will spike then plummet. It's not the same as the standard oral glucose tolerance test they do for type 2 diabetes.

There are other causes of hypoglycemia too (auto-immune stuff e.g. Addison's, endocrine tumours). Please get it checked out either way. Mine was diagnosed after I fainted and had three massive convulsions. I was at my physiotherapist (getting treatment for three stress fractures!) and she knew what to do, but it is terrifying to think that it could have happened while I was driving, etc.

Regarding the osteopenia, blood calcium tests can be very misleading. Calcium is used for more than just bones, for example it is also necessary for heart functioning. When you don't have enough circulating calcium in your blood, your body DRAWS calcium from your bones in order to keep your blood calcium at the right level. Blood calcium levels are also greatly influenced by what you have eaten just recently, rather than your a longer-term intake. In sum, your blood test doesn't really tell you if you are getting enough calcium in your diet.

I suggest tracking your intake for a while, to get a better idea whether you are meeting your RDI, then make up the balance with a quality calcium supplement. Mine provides 600mg elemental calcium, 1000iu vitamin d and a bunch of vitamins and minerals that assist with bone formation etc. I also aim for an extra serve of calcium above the RDI since with the osteopenia and four stress fractures in the past year I figure the extra will help with bone healing.

Finally, I assume by your name that you're a female? Estrogen is vital for bone health. If you have amenhorrea you will want treat the cause of it -- whether it is 'just' due to celiac or die to other health issues too.

Seeing an endocrinologist is an excellent idea. They can diagnose the cause of your hypoglycemic episodes and further investigate whether something other than celiac may be contributing to your osteopenia -- endos are often the people who diagnose osteopenia / osteoporosis in the first place. It is possible that your hypoglycemia and osteopenia are connected.

[CajunChic]

Wow, thanks for the info! I am waiting for an endo appointment soon. I do eat pretty balanced, but could find snacks that are better through the day. Just this week, I ate a ham/cheese sandwich for breakfast, 2 hours later my sugar was at 30! The next day, just one piece of toast woith PB and flax seeds, no episode. I can wake up with low sugar, other days go hours without eating and be ok. Crazy!

I don't have a cycle due to Lo loestrin (birth control) I take for my endometrosis. I can't bear the pain without this pill. Could this be causing some bone issues? It is the lowest amount of estrogen in a bc pill.

Hoping for answers soon!

[Piccolo]

You may also want to see a doctor who specalizes in osteoporosis.  I see one here in the Atlanta area.

 

Susan

[LDJofDenver]

I too have osteopenia, not uncommon for celiacs.  I agree seeing endocrinologist is key.  Mine had me on prescription level Vitamin D for two years.  Vitamin D promotes calcium absorption, among other things (so even if you're taking calcium it may not be absorbed properly if your Vit D is low). My endocrinologist looked at things at a much more finite level than my primary care doc.

[Sammykins]

Wow, thanks for the info! I am waiting for an endo appointment soon. I do eat pretty balanced, but could find snacks that are better through the day. Just this week, I ate a ham/cheese sandwich for breakfast, 2 hours later my sugar was at 30! The next day, just one piece of toast woith PB and flax seeds, no episode. I can wake up with low sugar, other days go hours without eating and be ok. Crazy!

I don't have a cycle due to Lo loestrin (birth control) I take for my endometrosis. I can't bear the pain without this pill. Could this be causing some bone issues? It is the lowest amount of estrogen in a bc pill.

Hoping for answers soon!

I'm glad to hear that you will be seeing an endocrinologist.

I'm unfamiliar with Lo loestrin or running pill packets together, as I'm assuming you're doing. However, given that birth control pills containing estrogen are sometimes used in the treatment of osteopenia/osteoporosis, I think it is unlikely to be impairing on your bone health. Estrogen helps maintain bone density, it's why the greatest amount of bone loss in women occurs just after menopause. Do give the endo your medication history though, some meds such as corticosteroids can reduce bone density.

What I would be concerned about is whether the pill is masking amenorrhea. A lot of doctors prescribe estrogen-containing BC pills for amenorrhea when it is accompanied by low estrogen. They do this for bone and reproductive health. However, if you're only getting your period because you are on the pill, and the reason why you aren't getting it is because of malnourishment, there is scant evidence that it will protect your bones. A lot of doctors do not know this. Food is the best medicine. Have you had your antibodies checked since diagnosis? An endoscopy to see if your villi have healed? If you aren't absorbing nutrients properly your bone health will continue to suffer.

It might be worthwhile tracking what you're eating and your symptoms/blood glucose levels. Waking up hypo might be connected with what you ate - or didn't eat - for dinner the night before. I do find that my blood glucose level is more erratic if I eat the wrong thing rather than just not eat at all. If I don't eat my sugar will gradually fall provided I don't engage in intense exercise. Eat the wrong thing however and it will plummet.

Good luck!

[CajunChic]

Thank you all so much! I'll update as soon as I get answers from my endo!