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jen2be2

Dd's Dexa Scan Results Are In

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Hi Everyone.

You might remember me from a couple of months ago asking about the DEXA scan for my 5 year old daughter.

We just got the results today. She does have low bone density.

They are referring her to an Endocrine Specialist and an Orthopedic Specialist.

As we have HMO, we are going to be waiting a while before we actually can make an appt and get in.

I was hoping that someone could fill me in on what to expect from the Specialists and what they might be looking for.

Thank you!


Jen

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Hi Everyone.

You might remember me from a couple of months ago asking about the DEXA scan for my 5 year old daughter.

We just got the results today. She does have low bone density.

They are referring her to an Endocrine Specialist and an Orthopedic Specialist.

As we have HMO, we are going to be waiting a while before we actually can make an appt and get in.

I was hoping that someone could fill me in on what to expect from the Specialists and what they might be looking for.

Thank you!

I'm shocked that they did a DEXA on your 5yo. DEXAs are not reliable on people under the age of 35 because they compare your results against a healthy 30 yo female. Obviously your daughter will have much lower density than a 30yo because she is still growing. The scores that are compared are called T values. Her Z-scores are measurements against other people her age. However, there are very few 5yo's that get DEXA scans, so those will also be unreliable.

Remember, your daughter's bones will grow until she is at least 35...

But, lots of people get base-line DEXA scans so they can measure them against future scans. But again, this only works when your original scan is a reliable one to begin with. A 5 yo is constantly growing, so her base exam is naturally going to be different than one she gets in a year.

My DEXA scan showed osteoporosis. I'm 37. That's still very young to have osteo, but it's old enough to worry about low bone density because my t-scores and z-scores were low AND I've had 3 fragility fractures in 3 years. Now that I'm on a gluten-free diet, my doctors expect my bone density to improve. I'll go back and get a new DEXA in a year and expect the t-scores and z-scores to improve. With your daughter, you'd naturally see an improvement because her bone density will improve each year on its own.

Now, there is no single kind of doctor that works with osteoporosis. An endocrinologist will look at the metabolic issues - such as lack of absorption of vitamin D (a common problem with those who have celiac). An orthoped. will look at bone problems in case your daughter has osteomalacia - a common childhood illness that is related to osteoporosis - basically, soft bones.

Make sure her doctors talk to each other!!!! It took a lot of work to get my doctors to talk to each other, but their communication was what led to correct diagnoses and an effective treatment plan.

Good luck to her.

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Hi Everyone.

You might remember me from a couple of months ago asking about the DEXA scan for my 5 year old daughter.

We just got the results today. She does have low bone density.

They are referring her to an Endocrine Specialist and an Orthopedic Specialist.

As we have HMO, we are going to be waiting a while before we actually can make an appt and get in.

I was hoping that someone could fill me in on what to expect from the Specialists and what they might be looking for.

Thank you!

In addition to low bone density did they find that her bone age did or did not corelate to her actual age? I am glad they are checking into this to be on the safe side but I would not be surprised if her next scan improves with just the gluten-free diet and perhaps some supplemental calcium and vitamin D. Excercising can also help with bone density your ped should be able to give you a referral to a physical therapist that can show you and her some excercises. Try not to get overly concerned, hard I know, but she hasn't been gluten-free very long and it can take some time to recover lost ground. Hopefully by the time she sees the specialists there will already be some improvement. One thing I would not do is let them give her any of the drugs that are for postmenapausal women's bone loss, those can have nasty effects even on adults. The chances of them giving her anything like Boniva or something like that is slim but if they do offer do as much research as you can before you agree to put her on them.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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Your daughter at 5 years of age has plenty of time to recoup bone density. As has been said, make sure she is getting plenty of calcium in her diet, Vitamin D3 and weight bearing/moderate impact exercise such as running, jumping and skipping rope. You are smart to get on top of this now. Make sure her doctors get educated about celiac disease and its detrimental effect on bone density. Go armed with documentation to show them. Remember, many or most docs are not up on celiac disease, though that is slowly improving.

Steve

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Thank you all for taking the time to respond to my question.

She did have the DEXA scan done at Children's Hospitial. When they gave me the results, they told me that they compared her results to other same race and age children and still found her bone density to be low~ so I am hoping that we are getting the correct test results.

It is good to know that this should get better with time. She has been on a gluten-free diet for almost a year now.

I will look into any supplement that they want to give her. In fact, I will probably come back here to see if anyone has taken what they are asking her to take.

Thanks for letting me know that I should also make a very big effort to keep the Ortho, Endo, GI and PED in the loop on her treatments.


Jen

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Thank you all for taking the time to respond to my question.

She did have the DEXA scan done at Children's Hospitial. When they gave me the results, they told me that they compared her results to other same race and age children and still found her bone density to be low~ so I am hoping that we are getting the correct test results.

It is good to know that this should get better with time. She has been on a gluten-free diet for almost a year now.

I will look into any supplement that they want to give her. In fact, I will probably come back here to see if anyone has taken what they are asking her to take.

Thanks for letting me know that I should also make a very big effort to keep the Ortho, Endo, GI and PED in the loop on her treatments.

I am glad that they are not just waiting to see and have given you the referral. You say she has been on the diet for a year now, are they doing any rechecks of her vitamin and mineral blood levels? How are her other celiac related symptoms doing? Are you already giving her supplements, vitamin D and calcium? If not I would start, make sure they are gluten free of course. Has she broken any bones? Is she growing? These are all things they will be looking at. There are a number of things they will be looking for but I would not be surprised if this was due solely to her celiac malabsoption so try not to worry to much. I am providing you some links:

This is the Mayo Clinic

http://www.mayoclinic.com/health/osteoporosis/AN00732

The NIH

http://www.niams.nih.gov/Health_Info/Bone/...steoporosis.asp


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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They did a whole lot of blood work when she had her 2nd endo and bio. last month. She was fine with all of her vit. levels. Her villi is perfect, but she does still have a mild case of gasritis.

She is on gluten-free vit., but I will not be suprised if they give her some extra Vit. D supplements.

Can low bone density be responsible for her chronic leg pain?


Jen

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Can low bone density be responsible for her chronic leg pain?

I'd think so, but I'm no doctor of course.

I know my DD before going gluten free had AWFUL leg pains. They seemed to have shaped up since going gluten-free. Only when she's glutened does she get that leg pain.

I do need to make sure she's getting enough VitD. I've started making her salmon omlettes for breakfast because both salmon and eggs have good VitD content. Plus she takes a multivitamin and calcium supplement (Viactiv caramels are gluten-free (not dairy free though) and are better than swallowing a pill).

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Can low bone density be responsible for her chronic leg pain?

It is possible it is also possible that the pain is muscle and nerve related. I had horrible leg pains every night as a child. They did finally resolve but at quite a cost. The pain seemed to go away at about the time I lost reflexes and partial bladder control. We were very poor so no one looked real hard for what was wrong. My Mom would sit by the side of my bed in tears with hot water bottles and rub my legs but that never did much good. Hopefully she is not experienceing the nerve issues that I did and hopefully she is gluten free, I am sorry but I can't remember whether she is or not. I hope she gets some relief soon. If she is not already taking a sublingual B12 you will want to add that to her vitamins, even if her regular supplements have B12 she may not be absorbing it properly.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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