You're very welcome. Sadly, the reason why they don't offer much explanation for newly-diagnosed patients is because many/most GI specialists simply don't know much about the disease. Their medical training leaves a lot to be desired, as far as MC is concerned. MC was first described over 35 years ago, but most GI docs have been trying to ignore it for most of that time, and because of that, most of them still don't know any effective ways to treat it (other than temporary treatment with drugs). But since the inflammation that causes the disease is due to the production of antibodies to certain foods, that means that as soon as the anti-inflammatory drugs are withdrawn, the patient relapses. That's why this discussion board was created, so that we could compare notes, and discover what works, and what doesn't.
If MC is not associated with Hashimoto's, then why are we approximately 7 times as likely as someone in the general population to have thyroid problems?
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=7783
If MC is not autoimmune, they why do so many of us have so many other autoimmune diseases?
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=3715
The celiac blood tests that doctors use are so insensitive and so unreliable that the average length of time between the onset of symptoms and an official medical diagnosis of celiac disease in this country is 9.7 years, according to the most recently-published data. In Canada, it's 12 years. Doctors need to get their act together and figure out how to diagnose celiac disease in particular, and gluten sensitivity in general.
According to the National Foundation for Celiac Awareness, only about 5 % of the total cases of celiac disease are ever diagnosed. Ever diagnosed! That's a pathetic diagnostic record. If you happen to have a copy of my book handy, here's a quote from page 108 that illustrates why doctors are incapable of diagnosing more than a small fraction of celiac cases, let alone non-celiac gluten sensitivity:
Here is reference 6 from that quote:Research shows that for all practical purposes, they are capable of detecting only fully-developed cases of celiac sprue, and they even miss a large percentage of those. One such study looked at 115 subjects with biopsy-proven celiac disease and found that only 77 % of those who had total villus atrophy showed a positive serum anti-endomysial antibody test result.6 Furthermore, in this particular study, only 71 % of the total number of subjects had total villus atrophy, and for those who had partial villus atrophy, only 33 % showed a positive anti-endomysial antibody test result. As the research report so eloquently pointed out, “Serologic tests, in clinical practice, lack the sensitivity reported in the literature” (Abrams, et al., 2004, p. 547).
6. Abrams, J. A., Diamond, B., Rotterdam, H., & Green, P. H. (2004). Seronegative celiac disease: increased prevalence with lesser degrees of villous atrophy. Digestive Diseases and Sciences, 49(4):546–550. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/15185855
It takes many years to accumulate enough intestinal damage to reach the point where there is enough villus damage in the small intestine to trigger a positive result on those tests. So basically, that's why doctors have such a ridiculously poor record of diagnosing gluten sensitivity.
So what does all this mean? It means that the odds are very high that just like most of the rest of us, you are sensitive to gluten, despite our doctors telling us that we are not.
Approximately 5,000 IU is the normal daily usage rate for vitamin D, for adults. IBDs (such as MC) tend to deplete vitamin D levels, and conversely, low vitamin D levels weaken the immune system and greatly increase the odds of developing an IBD or some other autoimmune type disease. Therefore, if you want to boost your vitamin D level to a more normal number, you will have much better results if you take twice that amount for at least a couple of months, and then have your blood level checked. Taking the daily consumption rate of vitamin D may eventually increase your vitamin D blood level, but it will take a very long time to show any significant improvement. Most of us take more than what your doctor recommended, even though our level is already well up in the normal range.
There are many possible causes of a high platelet count, including overtreatment with certain drugs, inflammation (associated with an IBD, for example), and iron deficiency anemia. Your doctor should be aggressively trying to determine the cause, because a high platelet count can increase the risk of serious adverse events. It's possible that the antibodies to your thyroid may be causing the increased platelet count.
Lactose is only a minor part of our problem. It's antibodies to casein (the primary protein in all dairy products) that are the problem for most of us (second to gluten).
If I were in your shoes, I would immediately cut all gluten and dairy products out of my diet, to see if that helps. And give it enough time to get results, because gluten antibodies have a very long half-life (120 days), so it can take months to see improvement, in many cases. If you aren't doing much better after several months, you may need to also remove soy and all legumes from your diet, because that's true for many of us here. Some of us are lucky, and we see rapid improvement, but for most of us, it takes months of careful attention to our diet, in order to get our life back.
MC is a tough disease. For many of us it can be debilitating, and for virtually all of us, it's life-changing. That means that treating it effectively, and getting our life back is never a walk in the park. It takes hard work, determination, and careful attention to our diet, but it's worth it in the long run, because not controlling the symptoms is intolerable. And the longer the symptoms remain uncontrolled, the greater the risk of developing additional autoimmune type diseases, unfortunately.
If you need more evidence, please read the post at the following link. This post was written just a few hours after you wrote yours.
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=18766
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This is my day today... I must have eaten something I should have. Thanks for your info.
