Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Doctors With Conflicting Advice
0

3 posts in this topic

Here's my story: As a 56 year old I've been losing bone density over the last couple of years despite taking calcium, vitamin D, and Fosamax. I went to a bone specialist who ordered up some tests to see if anything else may be contributing to the osteoporosis. My levels for gluten antibodies came back very high. I had no symptoms besides the bone density issue except for some weight loss ( about 10 lbs) over the last year. Interestingly, over the course of the past 3 months, I've had three doctors giving me drastically different advice. The bone specialist suggested an endoscopy and biopsy, feeling that if it was celiac, he would know that there was a malabsorption issue going on, and if it wasn't celiac, he would still consider me to be gluten intolerant, but that it would not be a contributing factor to the osteoporosis. I went to my primary physician with this information, and she said that considering my blood test results I should go gluten free and not bother with a biopsy. She said that I would feel better - even though I told her that I didn't feel bad! She disagreed with the bone specialist, saying that gluten intolerance or even celiac had nothing to do with osteoporosis. By this time I had done enough reading/research to know that she was wrong! Then I had my gastroenterologist consult. I asked him what if the endoscopy comes back negative? His reply was that I should not bother going gluten free, that without symptoms it may have just been a false positive blood test. I did have the endoscopy, and the gastroenterologist was easily able to see and confirm celiac. Has anyone else had such confusion?

0

Share this post


Link to post
Share on other sites


Ads by Google:

Welcome, TGK, and yes, unfortunately when it comes to celiac/gluten, confusion reigns supreme.

First you should know that if it is covered at all in medical school, it occupies maybe 2-5 minutes (just guessing here, but there is so much for a would-be doctor to learn and it gets short shrift). Someone told me the other day that medical knowledge is doubling every five years, so that makes a lot to cram into medical school. NOT, that I am excusing doctors, because there has been a big push in Continuing Medical Education (CME), particularly aimed at gastroenterologists, to inform about celiac now that it has been "discovered" that it is not a rare disease found in failure-to-thrive children.

Without testing your levels of Vitamin D, you PCP is incorrect in stating that celiac has nothing to do with osteoporosis. Celiac is a primary cause of low levels of D, and without D (and calcium and magnesium) your body cannot make new bone. Since celiac is a disease of malabsorption (hence the failure to thrive in children), most celiacs if they have been suffering for any length of time end up being deficient in many vital nutrients.

Your bone specialist was following the standard diagnostic path for celiac disease -- blood tests, endoscopy with biopsy. If diagnosis confirmed, test for nutritional deficiencies. If not confirmed, eat gluten free.

Your gastroenterologist, who should have been the most informed. was not all that helpful. If your test was a false positive (very rare) then what caused it? And a trial of the gluten free diet should be recommended to see if it helps. Of course, since you believe you have no other symptoms it would be hard to quantify if it were helping if you did not take the additional supplements. Fortunately you were spared this confusion with a positive biopsy. :)

Unfortunately, although one would expect it, your story is not at all uncommon (sorry :D ).

Incidentally, there are diverging opinions on the merits of the so-called bone-building drugs like Fosamax. One school of thought holds that the quality of bone made is not "real" bone, and does not have the same architecture and strength as normal bone. You might explore this further. I know that doctors prescribe "medicines" for everything, but it could well be that if you took the right supplements once you are rid of the gluten you could make better bone than the Fosamax helps you make. It is worth exploring via Mr. Google. It is interesting that osteoporosis is your only symptom (that you currently know of). You should have all your nutrient levels checked - B12 and other B's, A, E, K, ferritin/iron, folate, magnesium, zinc, manganese. Your PCP could order these but perhaps given her attitude it would be better to ask the gastroenterologist.

I wish you the best in restoring your bones to their former strength, and be sure to ask for any help you need in following the gluten free diet.

1

Share this post


Link to post
Share on other sites

Welcome, TGK, and yes, unfortunately when it comes to celiac/gluten, confusion reigns supreme.

First you should know that if it is covered at all in medical school, it occupies maybe 2-5 minutes (just guessing here, but there is so much for a would-be doctor to learn and it gets short shrift). Someone told me the other day that medical knowledge is doubling every five years, so that makes a lot to cram into medical school. NOT, that I am excusing doctors, because there has been a big push in Continuing Medical Education (CME), particularly aimed at gastroenterologists, to inform about celiac now that it has been "discovered" that it is not a rare disease found in failure-to-thrive children.

Without testing your levels of Vitamin D, you PCP is incorrect in stating that celiac has nothing to do with osteoporosis. Celiac is a primary cause of low levels of D, and without D (and calcium and magnesium) your body cannot make new bone. Since celiac is a disease of malabsorption (hence the failure to thrive in children), most celiacs if they have been suffering for any length of time end up being deficient in many vital nutrients.

Your bone specialist was following the standard diagnostic path for celiac disease -- blood tests, endoscopy with biopsy. If diagnosis confirmed, test for nutritional deficiencies. If not confirmed, eat gluten free.

Your gastroenterologist, who should have been the most informed. was not all that helpful. If your test was a false positive (very rare) then what caused it? And a trial of the gluten free diet should be recommended to see if it helps. Of course, since you believe you have no other symptoms it would be hard to quantify if it were helping if you did not take the additional supplements. Fortunately you were spared this confusion with a positive biopsy. :)

Unfortunately, although one would expect it, your story is not at all uncommon (sorry :D ).

Incidentally, there are diverging opinions on the merits of the so-called bone-building drugs like Fosamax. One school of thought holds that the quality of bone made is not "real" bone, and does not have the same architecture and strength as normal bone. You might explore this further. I know that doctors prescribe "medicines" for everything, but it could well be that if you took the right supplements once you are rid of the gluten you could make better bone than the Fosamax helps you make. It is worth exploring via Mr. Google. It is interesting that osteoporosis is your only symptom (that you currently know of). You should have all your nutrient levels checked - B12 and other B's, A, E, K, ferritin/iron, folate, magnesium, zinc, manganese. Your PCP could order these but perhaps given her attitude it would be better to ask the gastroenterologist.

I wish you the best in restoring your bones to their former strength, and be sure to ask for any help you need in following the gluten free diet.

Thank you - your response is very helpful. Although I am not happy with all the doctors' conflicting advice - it is somewhat nice to know that I am not alone.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,332
    • Total Posts
      920,431
  • Topics

  • Posts

    • I would like to ask if anyone has eaten puffed rice from Arrowhead Mills.  My daughter, who has celiac, wants to eat it and I am looking for advice.  The only ingredient is rice, but they do not test the product so do not label it gluten free.  I called the company and they say they clean all their equipment between each product, but since they don't test it cannot label it as gluten free.  Would you allow your daughter to eat this product?
    • He might have celiac disease (or just the start of it).  He might have Non-celiac Gluten Intolerance, which is real, but there is not a test for it.  He might have other food intolerances (milk, dyes, etc.).  You have been to an allergist and he did not positive for allergies (I assume wheat was included in the panel.).  Trialing a diet is fine, even a gluten free diet, when you ruled out everything.  But you have that quirky TTG result.  I gave you the link from the MayoClinic (top notch) and their algorithm recommends further evaluation.  An allergist is not a celiac expert nor is primary care doctor.  You should get a referral to a Ped GI.  If she/he suggests a gluten-free diet, then fine.  Because if he improves then, the GI will give you a diagnosis.  By the time you see the GI, he might have ordered another round of celiac blood tests, genetic tests, or he might want to order an endoscopy.  This case is not clear and that is a bummer.   The cure is the diet.  But he will be going to school and a diagnosis will pave the way for accommodations all the way to college.  And anyone here will tell you that once you get off gluten (and that is the root cause), it is awful....horrific... to go back on it for further testing.   This is his life and yours.  You must do what is best for your family.  I wish you well and we are here to support you.  I care.  I am mom.  
    • This just published: Highlights   • Kernel-based gluten contamination in oats skews gluten analysis results. • Grinding inadequately disperses gluten to allow a single accurate analysis. • Lognormal distribution of the test results renders a single test unrepresentative.   Abstract Oats are easily contaminated with gluten-rich kernels of wheat, rye and barley. These contaminants are like gluten ‘pills’, shown here to skew gluten analysis results. Using R-Biopharm R5 ELISA, we quantified gluten in gluten-free oatmeal servings from an in-market survey. For samples with a 5–20 ppm reading on a first test, replicate analyses provided results ranging <5 ppm to >160 ppm. This suggests sample grinding may inadequately disperse gluten to allow a single accurate gluten assessment. To ascertain this, and characterize the distribution of 0.25-g gluten test results for kernel contaminated oats, twelve 50 g samples of pure oats, each spiked with a wheat kernel, showed that 0.25 g test results followed log-normal-like distributions. With this, we estimate probabilities of mis-assessment for a ‘single measure/sample’ relative to the <20 ppm regulatory threshold, and derive an equation relating the probability of mis-assessment to sample average gluten content.   The full article can be accessed at Gluten Free Watchdog if are a subscriber.
    • If I may say something right now, the suggestions, advice, and information provided to you in this forum is just that: suggestions, advice, and information.  What has been provided can be used as tools to help figure out what is going on.  Please don't go away disgruntled or too frustrated.  There have been times myself when advice and suggestions was given to me, and I was not sure what to do about all the information.  I had to think and pray on it before I could act on it because my brain was functioning enough to do something about it right away.  It was on survival mode.  Forgive me if I am wrong, but I believe this is where you are at right now.  You are not sure where to go or what to do, so your body is just doing what it can to function day in, day out.  If this assumption is correct, I GET IT!  It is not fun, neither is it easy. Don't give up.  Things will get better.  Take all of this information and go to your primary doctor to see if you both can put your heads together and figure this out.  The answer may not come right away, but be patient.  it could be everything coming at you at once that making your body go into hypersentive mode.  I don't know, because I am not in your situation.  Until you go to the doctor, do what you know to do and God will take care of the rest.  There is something that has kept me sane through this past year: It will be okay because God is in control.  He knows what is happening to you and your future is going to be.  When you have a good day, enjoy those moments.  When you have a bad day, bring back to memory those good days and see if you can do something for another person.  I have found this year that if I focus on someone else through the bad times especially things don't seem as grim. I will be praying for you.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,387
    • Most Online
      1,763

    Newest Member
    Jaimesmile
    Joined