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Dianosis Help?

sore joints

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sore joints Apprentice
sore joints
Posted

Hi everyone!

When I read all of your letters, I feel guilty because I'm not suffering in the same way as most of you and can't imagine what all of you are going through.

For 3 years now I have been suffering from bouts of joint and bone pain. It started following pregnancy. I've been through every test known. Now I also have very low ferriton and fatigue. I recently took a Celiac blood test and it came back as mildly abnormal. Did the doctor bother to tell me what this means...NO. She referred me to a gastro doc but I just found out that it will take 11 months just to get an appointment. What the hell. I'm going through another flare-up of pain and do not want to wait any longer. Apparently my naturalpath can do an allergy test to determine if I am sensitive to gluten. What do you think of this. After the test I'm thinking of going of gluten to see if I feel better. Anyone have any opinions on this?

I would really like to hear from others who have similar bone and joint pain. Any advice would be greatly welcomed. Thanks!

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MNB Newbie
MNB
Posted

Dear Sore Joints:

Although your symptoms could be caused by Gluten Intolerance (joint pain is common from what I can tell on this site), you may want to consider other possibilites.

I am recently NOT a fan of MD's and it was a Homeopathic Doctor that identified my gluten-allergy symptoms, but the joint-one pain you are describing sounds alot like what I was feeling before I was diagnosed w/ Lupus. Have the doctors tested you for any other auto immune disorders? (Fibromilagia, lupus, MS?). It took the doc's several years to diagnose me with lupus and I assumed when I recently got sick this time it was the lupus but come to find out it wasn't - it was the gluten.

I wouldn't rule out anything and don't believe everthing the MD's tell you - 11 months for an appointment is obnoxious! :o Get a new Doc or go with the Naturopath to at least get a definitive answer on the allegy.

Good Luck!

CarlaB Enthusiast
CarlaB
Posted

You can order a test at www.enterolab.com and you will know within two weeks after sending in the sample. Check out their website. I was happy with their service.

Lymetoo Contributor
Lymetoo
Posted

Also explore the possibility of lyme disease. The tests are lousy, but if you need information, feel free to contact me!

welcome! :)

AndreaB Contributor
AndreaB
Posted

I also like enterolab if you want to check for intolerance to gluten. They also include a gene test, ttg and malabsorption in the whole gluten package. I think it still includes dairy at no charge. They also offer testing for soy/egg/yeast.

sore joints Apprentice
sore joints
Posted
  • Author

Hi! Thanks for the great replies. I've been tested for MS, Lupus, Rheumatoid Arthritis, Bone Cancer, and who knows what else. I will check out enterolab and do my testing through the naturalpath and if all else fails, I guess I try going gluten free to see if I feel better. I have no idea what this type of diet entails. I guess I'll have to spend some time researching products and ingredients. Thanks everyone.

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    • knitty kitty
      My only proof

      By knitty kitty · Posted

      You're right, doctors usually only test Vitamin D and B12.  Both are really important, but they're not good indicators of deficiencies in the other B vitamins.  Our bodies are able to store Vitamin B12 and Vitamin D in the liver for up to a year or longer.  The other B vitamins can only be stored for much shorter periods of time.  Pyridoxine B 6 can be stored for several months, but the others only a month or two at the longest.  Thiamine stores can be depleted in as little as three days.  There's no correlation between B12 levels and the other B vitamins' levels.  Blood tests can't measure the amount of vitamins stored inside cells where they are used.  There's disagreement as to what optimal vitamin levels are.  The Recommended Daily Allowance is based on the minimum daily amount needed to prevent disease set back in the forties when people ate a totally different diet and gruesome experiments were done on people.  Folate  requirements had to be updated in the nineties after spina bifida increased and synthetic folic acid was mandated to be added to grain products.  Vitamin D requirements have been updated only in the past few years.   Doctors aren't required to take as many hours of nutritional education as in the past.  They're educated in learning institutions funded by pharmaceutical corporations.  Natural substances like vitamins can't be patented, so there's more money to be made prescribing pharmaceuticals than vitamins.   Also, look into the Autoimmune Protocol Diet, developed by Dr. Sarah Ballantyne, a Celiac herself.  Her book The Paleo Approach has been most helpful to me.  You're very welcome.  I'm glad I can help you around some stumbling blocks while on this journey.    Keep me posted on your progress!  Best wishes! P.S.  interesting reading: Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/
    • NanceK
      My only proof

      By NanceK · Posted

      So interesting that you stated you had sub clinical vitamin deficiencies. When I was first diagnosed with celiac disease (silent), the vitamin levels my doctor did test for were mostly within normal range (lower end) with the exception of vitamin D. I believe he tested D, B12, magnesium, and iron.  I wondered how it was possible that I had celiac disease without being deficient in everything!  I’m wondering now if I have subclinical vitamin deficiencies as well, because even though I remain gluten free, I struggle with insomnia, low energy, body aches, etc.  It’s truly frustrating when you stay true to the gluten-free diet, yet feel fatigued most days. I’ll definitely try the B-complex, and the Benfotiamine again, and will keep you posted. Thanks once again!
    • knitty kitty
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By knitty kitty · Posted

      Segments of the protein Casein are the same as segments of the protein strands of gluten, the 33-mer segment.   The cow's body builds that Casein protein.  It doesn't come from wheat.   Casein can trigger the same reaction as being exposed to gluten in some people.   This is not a dairy allergy (IGE mediated response).  It is not lactose intolerance.  
    • trents
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By trents · Posted

      Wheatwacked, what exactly did you intend when you stated that wheat is incorporated into the milk of cows fed wheat? Obviously, the gluten would be broken down by digestion and is too large a molecule anyway to cross the intestinal membrane and get into the bloodstream of the cow. What is it from the wheat that you are saying becomes incorporated into the milk protein?
    • Scott Adams
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By Scott Adams · Posted

      Wheat in cow feed would not equal gluten in the milk, @Wheatwacked, please back up extraordinary claims like this with some scientific backing, as I've never heard that cow's milk could contain gluten due to what the cow eats.
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