Shrinking

[minton]

Okay let you all laugh at my midget ness. I find it funny as well. In 5th grade I was measured at alot of doctors offices. They all said I was around 5'2. Now, almost a decade later and a senior in high school, I am 4'11! I've stayed gluten-free since diagnosis 2 years ago... I think I am still shrinking, and yes, it's a documented shrinking problem. Asked for growth hormones at 17 but was told I'm too old.

Anyone else shrink? Is there a known cause? I haven't been checked for Osteoporosis... I look forward to my annual check up...maybe I shrunk another inch since 6 months ago... And yes, I can at least laugh at my shrinking...It's always funny to go out and have people think i'm 16 or even younger....One person told me I look like a physically overdeveloped (women) 12 year old!

So anyone else shrinking?

[ravenwoodglass]

Have you asked for a referral to an endocrinolgist? I would. Unless your doctor has done xrays to check your bone age he really can't sure if you growth plates have fused yet.

The fact that this is so pronounced also causes me to urge you strongly to get checked for osteoporosis. You also need to be evaluated for scoliosis or spinal curvature, something else that would affect your height. Your doctor really needs to get on top of this. That much documented loss in someone your age really needs to be accounted for.

[minton]

Have you asked for a referral to an endocrinolgist? I would. Unless your doctor has done xrays to check your bone age he really can't sure if you growth plates have fused yet.

The fact that this is so pronounced also causes me to urge you strongly to get checked for osteoporosis. You also need to be evaluated for scoliosis or spinal curvature, something else that would affect your height. Your doctor really needs to get on top of this. That much documented loss in someone your age really needs to be accounted for.

I have been checdked for scoliosis every year since 10 years ago. I slouch when sitting, but I have perfect posture when standing or riding a horse (riding is great for posture). The only relevant back symptom that I can think of is that if I slouch while standing, it kills my lower back but if I sit straight up when not riding a horse, that kills my lower back too. Not even back supports help that.

I do see an endocrinologist. Other than annual checkups, I never see my PCP (he's a jerk , especially about celiac and sometimes I wonder if I know more than him). I go to my endocrinologist for anything of importance because he is so wonderful. We have discussed the height thing but not in much detail. I do have a thyroid goiter that's under treatment and doing well.

I have not had xrays done. I thought about it but honestly, other than shrinking, I have no obvious bone problems. I mean, I have trained a few crazy horses including my own over the last decade and had my fair share of injuries...but never broken a bone to the amazement of my doctors. I will talk to my endocrinologist about an xray. I think he wants to do an image test of some sort on my thyroid anyway so maybe I can do both at once.

Other than osteoporosis which can cause broken bones, is any of that stuff really serious? Cuz I do have bone pain, not helped from the gluten-free diet. The pain seems to come literally from inside my bones such as where the marrow is. It's hurt like that for over 12 years now. I keep getting told it's growth spurts (funny, I'm not growing!). No tests have ever been done to check whats wrong on the pain...all i know is the pain started in my hips and has now spread to my ribs, wrists, shin bones, and fingers. I will go ahead and say that the pain is worsening as well and there are times (I was prescribed vicodin for a car accident a few months ago) where even vicodin does not ease that pain. (Please don't think I misuse this med. I was given 12 pills for pain months ago and have used it only on the severe days. I have 8 or 9 left since filling the script over 3 months ago. No lectures on drug abuse please.) Like I said, the doctors roll theirs eyes and ignore it and tell me to do the same. I guess after 12 years I only notcie it when it's bad...I wonder what it would be like to be pain free?

[ravenwoodglass]

I have been checdked for scoliosis every year since 10 years ago. I slouch when sitting, but I have perfect posture when standing or riding a horse (riding is great for posture). The only relevant back symptom that I can think of is that if I slouch while standing, it kills my lower back but if I sit straight up when not riding a horse, that kills my lower back too. Not even back supports help that.

I do see an endocrinologist. Other than annual checkups, I never see my PCP (he's a jerk , especially about celiac and sometimes I wonder if I know more than him). I go to my endocrinologist for anything of importance because he is so wonderful. We have discussed the height thing but not in much detail. I do have a thyroid goiter that's under treatment and doing well.

I have not had xrays done. I thought about it but honestly, other than shrinking, I have no obvious bone problems. I mean, I have trained a few crazy horses including my own over the last decade and had my fair share of injuries...but never broken a bone to the amazement of my doctors. I will talk to my endocrinologist about an xray. I think he wants to do an image test of some sort on my thyroid anyway so maybe I can do both at once.

Other than osteoporosis which can cause broken bones, is any of that stuff really serious? Cuz I do have bone pain, not helped from the gluten-free diet. The pain seems to come literally from inside my bones such as where the marrow is. It's hurt like that for over 12 years now. I keep getting told it's growth spurts (funny, I'm not growing!). No tests have ever been done to check whats wrong on the pain...all i know is the pain started in my hips and has now spread to my ribs, wrists, shin bones, and fingers. I will go ahead and say that the pain is worsening as well and there are times (I was prescribed vicodin for a car accident a few months ago) where even vicodin does not ease that pain. (Please don't think I misuse this med. I was given 12 pills for pain months ago and have used it only on the severe days. I have 8 or 9 left since filling the script over 3 months ago. No lectures on drug abuse please.) Like I said, the doctors roll theirs eyes and ignore it and tell me to do the same. I guess after 12 years I only notcie it when it's bad...I wonder what it would be like to be pain free?

I am so sorry you have had to live with this pain. The pain combined with the skrinkage really IMHO needs to be investigated more throughly. Have you consulted with a rheumatologist? I would insist on finding the cause of this if possible as it seems to be escalating. You won't get any lectures from me about the vicodin. There is nothing wrong with pain relief when it is needed. Unfortunately many doctors in the road to celiac diagnosis get the idea that we are nut cases who want to be sick. It sounds like you may have gotten locked in that mindset by them. Believe me I know what that's like. But don't give up there are good doctors out there who may be able to help. If you have access to a larger perhaps even a teaching hospital in your area they might be able to help.

[minton]

I am so sorry you have had to live with this pain. The pain combined with the skrinkage really IMHO needs to be investigated more throughly. Have you consulted with a rheumatologist? I would insist on finding the cause of this if possible as it seems to be escalating. You won't get any lectures from me about the vicodin. There is nothing wrong with pain relief when it is needed. Unfortunately many doctors in the road to celiac diagnosis get the idea that we are nut cases who want to be sick. It sounds like you may have gotten locked in that mindset by them. Believe me I know what that's like. But don't give up there are good doctors out there who may be able to help. If you have access to a larger perhaps even a teaching hospital in your area they might be able to help.

What does IMHO stand for? I'm not very good with acronyms...I have not consulted a rheumatologist but I will look into it. I will ask my mom (she's the insurance holder) for a list of rheumatologists on our plan and work my way from there. Thank you for understanding about the pain relief...I've had lectures from 2 orthopedic surgeons (the accident messed my knees up) over it because they think advil should cut all pain. And it does, for my knees.

My PCP actually believes that celiac does not exist and has gone so far as to make snide comments and laugh and sneer. He's a pediatrician and since I'm 19 I'm in the market for a PCP for adults. I'm phone interviewing them now to ward off more jerky doctors. My endocrinologist diagnosed me and I swear that man is a genius. He doesn't think I'm making up the bone pain and we keep trying different ways to fix it. Nothing is helping. So yes I will consult a rheumatologist.

I think there is a teaching hospital in Atlanta and that's pretty near to me...I will lookinto that.

[ravenwoodglass]

What does IMHO stand for? I'm not very good with acronyms...I have not consulted a rheumatologist but I will look into it. I will ask my mom (she's the insurance holder) for a list of rheumatologists on our plan and work my way from there. Thank you for understanding about the pain relief...I've had lectures from 2 orthopedic surgeons (the accident messed my knees up) over it because they think advil should cut all pain. And it does, for my knees.

My PCP actually believes that celiac does not exist and has gone so far as to make snide comments and laugh and sneer. He's a pediatrician and since I'm 19 I'm in the market for a PCP for adults. I'm phone interviewing them now to ward off more jerky doctors. My endocrinologist diagnosed me and I swear that man is a genius. He doesn't think I'm making up the bone pain and we keep trying different ways to fix it. Nothing is helping. So yes I will consult a rheumatologist.

I think there is a teaching hospital in Atlanta and that's pretty near to me...I will lookinto that.

IMHO stands for 'in my humble opinion'.

You definately need a new PCP. You might want to ask your endocrinologist if he has any recommendations for a new primary care person. Fortunately you are at an age where you need to get away from a ped so you don't have to say your not happy with him, just that you want a new doctor.

One last question, are you by any chance hypermobile? In other words do your joints extend beyond where most folks do? That can sometimes cause pain that feels like it is in the bones. It can also lead to instability which increases the number of sprains, strains and such. I am hypermobile and also have osteoporosis. For me the hypermobility seems to have protected me from breaks because my ligaments and tendons tear first.

You also, if I am not mistaken have not been gluten free for very long, in some instances the inflammatory response to the gluten can cause a great deal of pain and that can take a while to resolve. An acupuncturist might be able to help a bit with that until the cause can be found. I do hope you get to the bottom of this soon and that you get some relief.

[minton]

I do not believe I am hypermobile. I can't be sure though. I was in gymnastics when I was younger and if I'd stuck with it, I would've excelled (coach told mom that but I wanted horses haha). Started riding horses at age 10 and was told I had a natural gift for it but that didn't involve any severe stretching...It did aggravate my knees...I was told about 5 years back that my knee pain was caused because I hadn't grown inton them. THey said when I grew taller and my hips widened that my knees would align right and the pain would stop. Incidently I shrunk and my hips are no wider so my knee pain has not changed. I am double jointed in one shoulder but I think that's all.

Yeah actually I don't have to offend my PCP at all-they are kinda pushing me out! Mutual leaving each other. I have been gluten-free 2 years now and the bone pain has only increased. I have not been to an acupuncturist (call me a baby but I'm terrified of needles). I may go to a chiropracter thats also a naturopath and homeopath soon. I already asked. He's very familiar with celiac and all my other issues.

[mef]

I do not believe I am hypermobile. I can't be sure though. I was in gymnastics when I was younger and if I'd stuck with it, I would've excelled (coach told mom that but I wanted horses haha). Started riding horses at age 10 and was told I had a natural gift for it but that didn't involve any severe stretching...It did aggravate my knees...I was told about 5 years back that my knee pain was caused because I hadn't grown inton them. THey said when I grew taller and my hips widened that my knees would align right and the pain would stop. Incidently I shrunk and my hips are no wider so my knee pain has not changed. I am double jointed in one shoulder but I think that's all.

Yeah actually I don't have to offend my PCP at all-they are kinda pushing me out! Mutual leaving each other. I have been gluten-free 2 years now and the bone pain has only increased. I have not been to an acupuncturist (call me a baby but I'm terrified of needles). I may go to a chiropracter thats also a naturopath and homeopath soon. I already asked. He's very familiar with celiac and all my other issues.

You may be hypermobile and not know it. I always thought of myself as inflexible, but nope hypermobile! Great times.

Anyway, have you had your vitamin D level checked? Low levels can cause bone pain and malabsorption of calcium. I had bone/nerve pain as well. Also check in with your orthopedist (right word? the one who examines joint/muscle pain and can make perscirption lifts to go in your shoes). Vicodin did not work for me. If you are in pain, tramadol helped me greatly. When NSAIDS stopped working and the stronger pain killers stopped working, I was moved to Tramadol. I think it's far less addictive and doesn't make you loopy.

[Amber M]

I have been checdked for scoliosis every year since 10 years ago. I slouch when sitting, but I have perfect posture when standing or riding a horse (riding is great for posture). The only relevant back symptom that I can think of is that if I slouch while standing, it kills my lower back but if I sit straight up when not riding a horse, that kills my lower back too. Not even back supports help that.

I do see an endocrinologist. Other than annual checkups, I never see my PCP (he's a jerk , especially about celiac and sometimes I wonder if I know more than him). I go to my endocrinologist for anything of importance because he is so wonderful. We have discussed the height thing but not in much detail. I do have a thyroid goiter that's under treatment and doing well.

I have not had xrays done. I thought about it but honestly, other than shrinking, I have no obvious bone problems. I mean, I have trained a few crazy horses including my own over the last decade and had my fair share of injuries...but never broken a bone to the amazement of my doctors. I will talk to my endocrinologist about an xray. I think he wants to do an image test of some sort on my thyroid anyway so maybe I can do both at once.

Other than osteoporosis which can cause broken bones, is any of that stuff really serious? Cuz I do have bone pain, not helped from the gluten-free diet. The pain seems to come literally from inside my bones such as where the marrow is. It's hurt like that for over 12 years now. I keep getting told it's growth spurts (funny, I'm not growing!). No tests have ever been done to check whats wrong on the pain...all i know is the pain started in my hips and has now spread to my ribs, wrists, shin bones, and fingers. I will go ahead and say that the pain is worsening as well and there are times (I was prescribed vicodin for a car accident a few months ago) where even vicodin does not ease that pain. (Please don't think I misuse this med. I was given 12 pills for pain months ago and have used it only on the severe days. I have 8 or 9 left since filling the script over 3 months ago. No lectures on drug abuse please.) Like I said, the doctors roll theirs eyes and ignore it and tell me to do the same. I guess after 12 years I only notcie it when it's bad...I wonder what it would be like to be pain free?

I think you should get referred to a bone specialist. This does not seem right to be ignored. Ask to be referred!!

[minton]

Well, I'm still doctor hunting. But a new update, I'm now 4'10 (measured at home by parents) and the bone pain has spread to my ankles. GREAT.

[Nancym]

Osteoporosis is really common with celiacs, even in children.

You definitely should push to get this diagnosed.

[Amber M]

Well, I'm still doctor hunting. But a new update, I'm now 4'10 (measured at home by parents) and the bone pain has spread to my ankles. GREAT.

Yes, you need to find a specialist, an arthritis doctor? Let us know.