Doctors With Conflicting Advice

[TGK112]

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?

[mushroom]

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 ).

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.

[TGK112]

  On 9/22/2012 at 4:08 AM, mushroom said:

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 ).

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.