Osteopenia (sp),soy, gluten, etc.

[PaigeP]

Well, here I am, a 31 year old, recovering from a spontaneous hip fracture that required surgery and 3 screws in April, a diagnosis of CC, also in April, and now I've discovered from my bone density scan that I have osteopenia. My levels were 1.4 SD in my hip and 1.2 in my spine.
Because of the CC, my doctor consulted with an endocrinologist and they believe I will not metabolize any pill form, like Boniva, etc. So, I'm going to be doing daily injections of Forteo for 2 years and then I go back for another bone density scan. The good news is, this Forteo has no side effects and is supposed to rebuild my bones.
For the first time in months, I feel optimistic. At the same time, I feel like my body is letting me down. Why is it betraying me? I know there are so many people who have health issues far greater than mine, but I still wonder why this is happening to me.
I did want to mention that I've cut soy from my diet as an experiment. I am a vegetarian, so it has been a bit difficult, but I wanted to see if it would have any impact on my flare ups. I have also purchased some gluten free foods, just to try them out for fun. I want to cut out one thing at a time, though, so I know what my culprits might be.
I found out the other night that pizza is one big fat no no. And I mean NO. It was HORRIBLE!!!! You know what I mean!

[tex]

Hi Paige,

I don't recall if you previously told us this information or not, but I'm guessing that your vitamin D level may be low. (If so, that's probably a primary reason why you have osteopenia, in the first place - adequate vitamin D is essential for the the body to be able to utilize calcium, in order to create new bone tissue). However, the reason I'm bringing this up, is because of the black box warning that Forteo carries, concerning the risk of osteosarcoma while taking the drug, or afterwards.

Vitamin D is apparently one of the best weapons available, for preventing all types of cancer. Research shows that a high vitamin D level in the blood can definitely offer significant protection against many types of cancer. Therefore, for someone in a relatively high risk situation, such as you are, I would recommend that you do everything you can, to maintain your 25(OH)D level in your blood, at the top of the range, or even above, (at the higher levels, vitamin D can actually have a therapeutic effect). IOW, if I were in your shoes, I would keep it up near 100 ng/mL, or above, (but not above about 150 mg/mL).

Forteo appears to work, but not without risk. Your doctor misinformed you, if he told you that Forteo has no side effects. You can view a list of some of the side effects in the first article referenced below.

The biggest problem, of course, is the black box warning that it carries. In case your doctor didn't discuss that with you, the following articles address it. I'm not trying to scare you, because presumably the risk is relatively low, but osteosarcoma is serious stuff, and the black box warning is there for a reason.

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000227

http://www.healthcentral.com/osteoporos ... teo-risks/

The web page referenced below was written for medical professionals, so it contains very comprehensive information about the drug, and related clinical trials:

http://www.drugs.com/pro/forteo.html

If you're going to take Forteo, a high vitamin D level, may be your best friend. Not only will it help to ward off cancer, but it will enhance your ability to build new bone tissue from the calcium in your diet. If you're afraid to take large doses of vitamin D, please at least keep your 25(OH)D level in the upper half of the range, in order to avoid any risk of vitamin D insufficiency.

I wish you the best of luck with this project, and with your MC treatment program.

Tex

[Gloria]

Hi Paige,

You are pretty young to be diagnosed with osteopenia; I'm sorry that you are going through this. I have osteoporosis, but I am in my 60's when the diagnosis is not very unusual.

You might find the following website about osteoporosis helpful: http://courses.washington.edu/bonephys/

It is maintained by an MD who is on the faculty of the University of Washington. I found her diagrams and graphs helpful in understanding how serious my numbers are relative to my age and fracture potential.

She also recommends increasing the vitamin D level, though her recommendations for supplements are lower than many of us here take. The first thing my osteoporosis doctor did was order a test of my vitamin D level. Surprisingly, mine was fine. I believe I have osterporosis due to having a small frame and being a white, anglo-saxon female (we are at high risk). The MC and steroids don't help either, of course.

I hope you are able to manage your MC and your osteopenia with success.

Gloria

[Polly]

Hi Paige!

I was a vegetarian (ethical) for 12 years before I got MC. Of course, I ate a lot of soy, whole grains (wheat, rye), and cheese during that time. Once diagnosed with MC, I found out that the best diet for me is the paleo/caveman diet. What a shock to realize that my genes were dictating that I would be healthiest eating the caveman diet! It felt like a cosmic joke of some kind.

I have since discovered that I feel the best (and can keep my MC in remission) when I am eating meat/fowl/seafood, veggies, nuts/seeds, and fruits. And I can no longer eat any grains, dairy, or soy. I have wondered if the vegetarian diet somehow helped to precipitate the MC. Perhaps because I ate such large amounts of soy/dairy/gluten for so long, it pushed my body over the edge, so to speak..........obviously I had a genetic predisposition and became intolerant to many foods . At least one other former vegetarian here, Maggie, suspects the same thing.

I would guess that gluten is most likely a problem for you. The odds are extremely high that if you have MC, you also have gluten intolerance. Gluten damages the small intestine and causes malabsorption of critical nutrients, leading to diseases like ostepenia. Have you thought about getting Dr. Fine's stool test to see if you are indeed intolerant to gluten and other foods? You CAN figure it out by eliminating foods one at a time, like you are trying, but it is much more difficult. Especially since, in the early stages of MC, you are already having diarrhea, so how do you really know if a particular food is the culprit? EVERYTHING is difficult to digest when the gut is inflamed - that's probably why you are having problems with the high-fiber foods like raw veggies and seeds. Many of us found that once we eliminate gluten and other intolerances, we could again tolerate some high-fiber foods.

Good luck! Please do not hesitate to ask any questions you might have.

Love,

Polly

[mbeezie]

I was diagnosed with osteopenia in my early 30s as well - no fractures though. I took fosamax for 2 months but it didn't agree with me. This was all years before I had any GI problems. Interstingly, I was a vegetarian for many years too. Now I am a cave dweller like Polly. I can tolerate a few grains but try to avoid as much as possible.

Mary Beth

[MaggieRedwings]

Hi Paige,

As Polly mentioned, I was a vegan for over 30 years and ate high amounts of soy and grains and I really do feel that it contributed to my MC and also contributed to the extreme amount of time I have devoted to getting this under control. My diet was in accordance with my religion and beliefs. About 2 years ago I had to come to terms with that. I was getting no protein intake at all once I went GF & SF and had to deal with fish and fowl in my diet. Since then, I must say I have felt a lot better and will continue this road. It was not an easy choice by any means but the right one for me. I, like Polly, have a large number of intolerances but have learned to deal with it through the many years of this disease.

Pizza for me would be a real disaster. Not one for you to contemplate again I would say.

Good luck to you and I do hope you consider going GF and then seeing what intolerances you may have from there.

Maggie