<<Disclaimer: Verify this information before applying it to your situation.>>

Almost five years after self-dx of CD through food challenges, I finally got a GP to refer me to a GI, who agreed that based on all of my symptoms and my reaction to gluten I likely have CD.  So he performed a small-intestine biopsy (my first ever).  I received the results this weekend and they came back as "unremarkable" and "normal".  I've been on a GF diet for several years and whenever I do ingest gluten I get quite the digestive reaction.  As a matter of fact, a week ago I had a reaction that started with major digestive upset and within a few hours I had a full-blown migraine.  I've never had a reaction that bad, but I know it was a gluten reaction because I thought back to what I'd eaten the night before and realized there was a gluten product in my meal that I hadn't realized at the time.  Anyway, I am still extremely ferritin deficient and still have obvious fat malabsorption. I also got the results of my second DEXA scan - a one-year follow-up - that revealed that my bone density deteriorated in my hip from -1.9 to -2.0 and in my spine from -2.3 to -2.5 (I'll turn 38 this year).  This despite the fact that, after my first DEXA scan freaked me out, I spent six months seriously training for a marathon and then completed the marathon (I was already fairly active before that, but I seriously increased the exercise through this training); I continued with the exercise at a more moderate level after the marathon; I continued weight training throughout the year; I started eating much healthier (given a choice, I'll usually pick potato chips or fries over healthy veggies, but I put my cravings aside and ate healthier than I ever have); and I religiously took 1000 to 1500 mg of calcium daily (using Viactiv), depending on whether I'd had any dietary calcium that day.  My first thought was that I worked my butt off (well, frankly, I didn't lose as much of it as I would have liked!!) and ate healthy for nothing.  But then a second thought terrified me - How bad would my bones have been on this second scan if I'd NOT done all that work over the last year?  I've read that it's possible to have a false negative on biopsy if the intestine has healed due to a gf diet.  Does anyone have any personal experience to back this up?  Also, the dr took only one biopsy, despite telling me before the procedure that he would probably take a few.  I'd informed him that I've been gf for several years and questioned whether, as with the blood tests, the biopsy would return negative results, and he told me that although the intestine does heal, the villi appear grow back stumpy, so a trained eye, knowing what to look for, will make the correct dx.  Shouldn't he have taken more than one biopsy, though, so as to ensure that he didn't take a piece from an undamaged section of the intestine and perhaps missed where the damage is?  And if there's no damage, why do I have such bad malabsorption?  My symptoms of CD were not nearly as severe or life-threatening as many of you have had to deal with, so I suspect that I might have quite a bit of undamaged intestine and he didn't get the part that was damaged.  I have an appointment scheduled for the 15th to speak with the GI to find out what to do now.  Obviously I still have an underlying problem causing all of these symptoms that needs to be dealt with and I believe it to be CD but don't know what to do now to stop my health from deteriorating any further.  Should I try now to get in to see an endocrinologist?  Or do you think I'm pretty much on my own at this point?  I'm sorry if this message is a bit unclear - I'm terribly frustrated and a bit scared that I'm going to continue to get worse despite being gf, eating healthy and exercising more than I ever have in my life.  Please don't flame me as to why I wanted a biopsy dx - It's not to validate my beliefs (and even if it was, that would be my option), but to force my doctors to take me seriously and work with me to reverse the damage that has been done to my body, preferably without pumping me full of biophosphates that will do other damage to my body and make the drug companies rich.  Thanks for your kind words and assistance.

~Tamara in Sacramento, CA

*Support summarization of posts, reply to the SENDER not the CELIAC List*
*******
To unsubscribe, email: mailto:[log in to unmask]
*******