Discussions By Condition: I cannot get a diagnosis.

6 years, doctors clueless, osteoporosis and flu-like symptoms

Posted In: I cannot get a diagnosis. 15 Replies
  • Posted By: vagabond79
  • February 7, 2013
  • 07:17 PM

Hello. Thank you for taking the time to read this and any insight would be greatly appreciated.

First off, I am a 33 year old male who has been in good health my entire life. My family health history is fairly good with high blood pressure and diabetes in my paternal grandfather.

For the past 6+ years I have constant flu-like symptoms (w/o fever). I basically feel as if I am coming down with a cold or flu.

In June 2010, I woke up with pain in my right hip. It slowly got better. The orthopedist said it was probably transient osteoporosis.
In May 2012, I basically experienced the same thing with my left hip, but way more painful. I had surgery to reinforce that hip with a titanium screw.

I began going to a bone endocrinologist at Duke to see if we could figure out the cause. He ran a DEXA scan that found I had osteoporosis in my spine, arm and hip. He said the hip pain was probably due to small fractures that did not show up on the MRIs. He ran a bunch of tests such as thyroid, alkaline phosphatase, vitamin D, testosterone, luteinizing hormone, etc. Nothing was out of the ordinary except for Vitamin D, which was at 15. I have since taken prescription supplements and it was 35 (normal) in my last test. I was then sent to rheumatology at Duke who also failed to find anything.

I have been tested for many other things previously by about a dozen doctors such as celiak, lupus, anemia, glucose, HIV, etc. but everything comes back normal.

Any thoughts you could offer would be greatly appreciated.

Jon

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15 Replies:

  • Have you been screened for Hyperparathyroidism? If not, also have your blood serum calcium levels checked.Good luck,S*
    Spirithart 2 Replies
    • February 9, 2013
    • 07:11 PM
    • 0
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  • Hate to tell you this, but 35 for vitamin D levels is considered grossly under what is considered normal levels these days. Most doctors are still working with that outdated information. I just googled Vit. D and Dr. Mercola. He has a number of good articles on Vitamin D. His information is current with what my nutritionist has been recommending. http://www.mercola.com/article/vitamin-d-resources.htmI take 5,000mgs a day of Vitamin D without any repercussions. Don't rely solely on that though, make a real effort to get into the sunshine if you are in a warm climate. There are a host of problems related to Vit. D deficiency, so you've got some reading to do.Also, if you are fracturing like this, I'd also do a heavy metals hair test. This is not the same as a blood test at your doctors. Blood only shows what is currently floating around in your system. This is because heavy metals are removed from the bloodstream to be stored in the tissues as the bodies way of trying to protect vital organs from damage. A hair test would show more.Certain heavy metals can be antagonistic to bone health, such as lead and cadmium and can cause osteoporosis. You might think you've had no exposure to these things, but surprise, if you are living on this planet you probably have some heavy metals in your system. For instance, I tested ridiculously high for lead (which might be caused by the flouride they add to water). So if you can't figure this out, then you will probably have to start researching and following clues. If I were you, I wouldn't solely put my faith in the medical community. They are often wrong. Be your own advocate, research online and then go to your doctor and present any significant findings.The other thing to address is diet. It's critical to support your system with healthy organic food. If you are drinking soda, eating fast food and processed foods, then you are weakening your system. Of particular concern are genetically modified foods. I've got some information on my website about diet if you care to look. My site dedicated to supporting another health problem, but the recommendations are relevant to anyone who wants to support their health.Hope this helps.http://morgellonsdiseaseawareness.com/diet_and_ph_plus_ph_chart
    Anonymous 42789 Replies
    • February 9, 2013
    • 07:35 PM
    • 0
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  • I would like to suggest that you do some research on ion channelopathies,, these are diseases of metabolism that affects potassium sodium calcium channels in the cells.. can affect many systems of the body,, considered rare but problems can occur when salts can not move in and out of cells as they should;; would like to suggest cinch the consortium or the investigation of nuerological channelopahies.. katts
    kattsqueen 29 Replies
    • February 16, 2013
    • 01:57 AM
    • 0
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  • What about fibromyalgia? It can cause flu like symptoms. In some cases severe pain anywhere in the body.
    Anonymous 42789 Replies
    • February 18, 2013
    • 08:35 PM
    • 0
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  • Hi Jon, I've been suffering from strange and inexpiable symptoms for a few years-- including constant sinus pressure and sometimes flu-like symptoms... Mine are not the same as yours, but perhaps we share a commonality.I'v been to many doctors and specialists and been tested for so many things but to no avail. I've been trying to self-diagnose myself for a while and recently stumbled upon a suggestion from another forum-- Something called Candidiasis. It's basically a fungal infection in the bowls. I tried the treatment (a strict die) which, to my amazement, actually worked! When I started to dig a bit further, it seemed that any undiagnosed food allergy could be the culprit. The longer an allergy goes untreated, the worst the fallback will be. I found this on a website about dairy allergies: " Food allergies also interfere with nutrient absorption, resulting in conditions such as iron deficiency anemia, osteoporosis, and fatigue. " Have you been tested for any intolerances/ allergies other than gluten? If not, I really suggest asking your doctor-- or trying an elimination diet. There's some more information here:http://www.three-peaks.net/annette/allergies-death.htmI hope this is of help to you!Pamela.
    PamelaPowley 6 Replies
    • February 23, 2013
    • 08:07 PM
    • 0
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  • Great 1st of all congrats you are normal, i read your post really painful but now everything is OK.. :) god bless you...
    Joemontana 8 Replies Flag this Response
  • Ask about fibromyalgia, those ar common symptoms for fibro
    Whoa575 3 Replies Flag this Response
  • Lymes Disease?
    KRNICE 1 Replies Flag this Response
  • In case my first diagnosis is incorrect, did any of the doctors prescribe Boniva or any kind of ibandronic acid?
    MrRoss 1 Replies Flag this Response
  • First of all congrats, You are really a lucky person don't know how is it ''whatever'' my wishes for you have a great time ahead, Enjoy your life may god bless you...!! Thanks
    Joemontana 8 Replies Flag this Response
  • Have you been screened for Hyperparathyroidism? If not, also have your blood serum calcium levels checked.Good luck,S*First of all, sorry for such a delayed response. I did not want to go into too much detail in my first post, so I will tell you a little more here.I went to a bone endocrinologist at Duke in October 2012. He ran the following labs:DEXA Scan (showed aforementioned bone density issues)ProlactinTestosterone, Total SerumThyroid ProfileLuteinizing HormoneBone Alk PhosphataseVitamin D TotalGen Code Commercial Lab-BAll labs except for the DEXA Scan and Vitamin D came back normal. Since that appointment, I have been taking Actonel and Vitamin D 50,000 IU 1x weekly. Unfortunately, I have not noticed any changes in my symptoms. Thanks for responding. Still trying to figure this out...
    vagabond79 2 Replies Flag this Response
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  • Hi Jon, I've been suffering from strange and inexpiable symptoms for a few years-- including constant sinus pressure and sometimes flu-like symptoms... Mine are not the same as yours, but perhaps we share a commonality.I'v been to many doctors and specialists and been tested for so many things but to no avail. I've been trying to self-diagnose myself for a while and recently stumbled upon a suggestion from another forum-- Something called Candidiasis. It's basically a fungal infection in the bowls. I tried the treatment (a strict die) which, to my amazement, actually worked! When I started to dig a bit further, it seemed that any undiagnosed food allergy could be the culprit. The longer an allergy goes untreated, the worst the fallback will be. I found this on a website about dairy allergies: " Food allergies also interfere with nutrient absorption, resulting in conditions such as iron deficiency anemia, osteoporosis, and fatigue. " Have you been tested for any intolerances/ allergies other than gluten? If not, I really suggest asking your doctor-- or trying an elimination diet. There's some more information here:http://www.three-peaks.net/annette/allergies-death.htmI hope this is of help to you!Pamela.Hi Pamela,Thank you for your reponse.I've been thinking a lot lately about food intolerances and allergies as a cause for my issues. Last week I went to a GI doctor and told him my issues and he just performed an endoscopy today. He said everything looked normal but he took some tissue biopsies, the results of which I will hopefully have sometime next week.I went to an allergist probably a year ago and he tested me for about 50 of the most common things out there. I came back 100% negative to everything (which he said was a little odd in itself). However, I don't feel like he tested me for many of the intolerances out there. What kind of doctor would do this kind of testing?I have the site you linked above saved to look at as soon as I can get to it. Thank you!
    vagabond79 2 Replies Flag this Response
  • vagabondOsteoporosis is a metabolic disease. Having it means that your body is not getting something it needs or is not processing what you are eating correctly--and your bones are suffering from it. I have had moderate to severe osteoporosis that I have just successfully moved from severe to moderate by eating gluten free (for a little over a year), without taking any prescription drugs. I suggest you try eating gluten free. It will eliminate any constipation problems you might be having, general stomach aches, bloating and gassiness and will give you energy! It takes about three weeks to see a difference. I am not celiac, but I am apparently sensitive to wheat. You might be amazed at how easy it is to be gluten free. You just eat whole foods, nothing processed. It takes a little time to figure out what food makes you feel the best, but it's worth the effort. I would not be a bit surprised to hear that most people with osteoporosis are sensitive to wheat. My opinion about this is that around 1960 when the three ancient wheats were genetically combined to produce "whole wheat," many people began to be sensitive to one of those ancient wheats, but they test negative for celiac disease. They are not sensitive ENOUGH for the celiac test to be positive. I rely on gluten free pasta as my staple (I also make my own bread in a small bread machine from garbanzo bean flour, oat flour, sorghum flour and teff). The brands Ancient Harvest and DeBole's have the tastiest pastas, and my favorite is small shells cooked al dente. Add a little chicken or turkey and some frozen spinach (onion and garlic, too) to a box of shells for a meal in a bowl (make four servings at a time so you'll have food ready). The most recent research on vitamin D showed that you can take up to 10,000 IU daily and not hurt yourself. I take 2,000 - 4,000 IU a day and a little more when I have bone pain. Feeling awful for a long time is AWFUL! Why not try some gluten free food?
    mewsician 1 Replies Flag this Response
  • Hi Jon,I hope you are getting better. I have also been having a frequent attack of flu with sore throat sometimes with a running nose, but most times without it. I have been trying out different medications, referred a number of doctors and alternative treatments including yoga. I am 30, I have been generally healthy except I had allergies as a child. Recently I found out that I do not have food allergies anymore as an adult but I have dust allergy - especially House Dust. These are mostly hidden in bedding so even vacuuming don't always help. Washing all the bedding incl. pillow covers etc. every week (more the better); opening of windows, curtains to let sun in as much and going out in the sun to get Vitamin D and eating a more healthy natural balanced diet - these all may sound very simple and obvious but it actually helped me, mainly the regular bedding washing. Around winter time, I get more sick and also in periods of high stress (work related pressure, etc.) seem to have an effect. A very balanced life-style, this may often be more easily said than done - does help. I still have the flu attacks at times but managed to reduce the frequency and get better quicker - still fighting for the full solution. Just my 2 pence of worth. Hope it helps./Raj.
    ray0012 1 Replies Flag this Response
  • Hi again, An intolerance won't always show up on tests. I have been tested for celiacs and that came back negative but my problems have gotten substantially better since reducing my gluten intake. I've also been tested for Hypoglycemia-- low blood sugar-- which came back negative. However, blood sugar tests are not easy to read and there is no real standard for what a good levels should look like. The will vary from person to person and to get an accurate reading, multiple tests have to be taken to compare levels.My best advice is to collect your own data: Record what you eat when you eat it and how you feel. Be very persistent! This will help you to identify the problem if it is at all food-related-- intolerance, allergy, or deficiency. And most importantly, if you drink coffee or anything caffeinated-- stop. See if it helps (after you've gone through the withdrawal) I really hope you start improving soon!Pamela.
    PamelaPowley 6 Replies Flag this Response
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