It Keeps Getting Worse

[jaimek]

Well, I was diagnosed with Celiac about one month ago and was very upset at first, but I have actually gotten used to the diet. The only thing that really bothers me is going out to eat. It is very difficult to go to normal restaurants anymore so I just stick with Outback and PF Changs. I was doing so well, but today I just got diagnosed with Osteopenia. I am only 26 years old On top of getting those results today, my office had a huge St. Patty's Day party and I could not eat a single thing. Needless to say I am really depressed and things just seem to be getting worse instead of better. Guess I just needed to write about my day since it has been one of those days when you just want to sit in the corner and cry. Was anyone else diagnosed with osteopenia? Is it possible to make a full bone recovery from this?? Any advise anyone can give me would be appreciated. It is so hard to be optimistic at this point.

[GFdoc]

Hi - I also was diagnosed with osteopenia ( which just means bone thinning - not as bad as osteoporosis). I was 39 when I was diagnosed (I just turned 40 -2 months ago). I've been taking calcium supplements for almost 20 years since I never liked milk and became lactose intolerant in my 20s (perhaps the first sign of celiac disease?)

The good news is that now we can heal our intestines by going on the gluten-free diet, and eventually start absorbing calcium again. Your doctor will probably want to repeat the bone density scan in a year or two to see if anything has changed. There are osteoporosis drugs out there that help reverse bone loss - we may not need them if our diet significantly improves our calcium absorbtion.

Don't be down about this - think of it as a blessing... we have been given a chance to correct what's wrong with our bodies...before it's too late!

P.S. another added plus (if you look at it the right way)...now I can walk past all the unhealthy junk food at parties and not give in to my pathetic will-power. It's no longer a question of extra calories--I think of it as medical neccessity!

[SteveW]

I know how you feel. I'm a 34 year old male and I was told I have osteopenia. Not the greatest news, could be worse, but not something anyone would want at such an early age. Had to sit in the Womans Imaging Center for my scan , that was fun.

My GI put me on Fosamax for a little while until my body responds to the diet which it hasn't yet.

I also became Lactose intolerant in my early 20s-except for an occasional pizza I never ate dairy.

[Guest shar4]

I feel for you, I was diagnosed with Osteoporosis when I was 41 or 42, before I was diagnosed with celiac disease. I have been taking calcium supplements, but haven't had a bone density done this year yet.

Blessings.

[Wish]

Hi there!

I totally understand where you're coming from! I'm 20 yrs old and was diagnosed with Celiac disease last May, and then back in February I was diagnosed with osteoporosis. At first I was pretty upset b/c it sucks to be in college and have the backbone of a 65 year-old woman (this is how my doctor described the bone thinning). I had to have the DEXA scan itself at the Geriatric center of a nearby hospital, right across from the Alzheimer's research unit, which wasn't exactly making me feel very young and carefree!

Here's the way I've been looking at things to help myself feel a little bit better about the situation: Osteoporosis doesn't develop overnight, so I figure I've had it for years and have just been living in ignorant bliss. It's not really a "new" diagnosis b/c the problem has been there for awhile...the diagnosis has just been a form of empowerment because it has exposed the problem and given me a definite motivator to work harder to incorporate calcium into my diet. According to my doctor, your bone mass doesn't peak until age 30, so bone loss tends to be pretty much reversible until then. Based on that information, there's lots of hope for both of us :-). Plus, you have the added benefit of having caught the bone loss before it reached full-blown osteoporosis, so reversal of the thinning is even more favorable.

I'm not taking any osteoporosis drugs at the moment due to another medical condition, but I have found some pretty tasty dietary sources of calcium, including:

1) Enjoy life foods Cinnamon crunch or Very Berry granola cereal (www.enjoylifefoods.com)

2) Pacific Foods Almond Milk or Hazelnut Milk

3) Kozy shack pudding (cinnamon raisin rice pudding, tapioca pudding, rice pudding, dulce de leche, etc.)

4) ANDI bars (Vanilla and chocolate shake-can be ordered at www.autismndi.com)

There's also Ensure, which is calcium fortified as well, although not everyone is a fan.

I hope some of this helped. Feel free to e-mail me if you want to talk to another Celiac w/bad bones :-).

~wish

[Guest gillian502]

I'm a 30 year old female and was diagnosed with osteopenia last year. My dr. said it was mild enough to just take calcium and vit. D twice daily, no fancy drugs were needed at this time. I don't see it as a big deal simply because it is rather reversible. If you take your vitamins and/or drugs, your bones do strengthen and you can reverse this. I've had a much, much, harder time handling the emotional and physical affects of the celiac disease itself.

[oreyes]

Hi All............

To you that have been diagnosed with osteoporosis don't get too down on yourselves. Granted, it's not something that will cure itself but there are many things you can do to slow the progression. Weight bearing exercise is one of the best------just simple walking.

I was diagnosed six years ago and started on Fosamax which I take once a week. Daily I consume 1500mg of calcium by taking Viactiv three times a day. It comes in chocolate and mocha (my favorite) and several other flavors and is gluten-free. It's just like having an after dinner mint after each meal. Other calcium rich foods are yogurt, cheese dark green vegetables, salmon and tofu. I don't dislike milk but as an adult, I'm just not a milk drinker.

I had a bone density scan last week and had almost a 6% improvement in my hips and spine mass so I guesss some of this is working. I'm sure not being diagnosed with celiac until three years ago didn't help my absorption rate of calcium but I'm pleased that I'm maintaining and not loosing more mass.

Good luck to all of you...............Judy

[jaimek]

Thank you all so much for your replies. You have really helped to make me feel better about all of this. It is nice to know that the bone loss is reversible and I am now taking Viactiv 3 times a day and I love it. Its like having an after dinner snack (just like Judy said). Wish- thanks for your suggestions on the calcium rich foods that are good. i am going to have to try some of them. I know that if I follow the diet and exercise that I will get better, this whole thing is just a big slap in the face all at once. Just hard to have all of this diagnosed after being care-free and eating/doing whatever I wanted for the past 26 years. I do feel lucky that this was all caught early because I realize that it can only get worse if not taken care of. So, I am grateful for that and I am also very grateful for this board cause it gets me through the hard times

[outthere39]

To the 26 year old

Man, I understand your blues. I am 25 and foud out last year that I have celiac disease. There is really something to be said to feel like you are in the prime of your life, then to find out this. The parties, the social gatherings, St. Patty's day was a rough one for me too. Usually, I would have been heading down to the local brewery to get my hands on some green ale. I have generally not enjoyed the holidays at all. I removed myself last year from them because I did not want to spoil them with my "problem." As I time passes on, I am really serious about the whole idea of if you want me, then you need to accept my celiac. Good luck and remember we are all battling the blues with you.

Richard