Gloria,
This isn't chiseled in stone, of course, but if worse comes to worse, I believe that you would probably be able to maintain on one Entocort pill every other day, indefinitely, for this reason: For most people, 8 weeks is the magic number, as an approximate rule of thumb. IOW, of you can maintain remission on a treatment for at least 8 weeks, then it should work indefinitely. That is an extremely low dose, (I'm not aware of anyone who has been able to maintain on less, for the long term). At that rate, long-term use shouldn't cause any side effect issues. Who knows, at some point you might still have a "eureka" moment, and figure out where the problem lies.
I'm not saying that this is the cause of the current problem, but it has occurred to me that, (considering the way that your symptoms have escalated), there is certainly a possibility that some pathogen might be playing havoc with your remission. C. diff comes to mind, for example. After being so successful, for so long, something else certainly may have entered the picture, and upset the apple cart. MC does not make us immune to any other issues that the general population is susceptible to. We sometimes have to remind ourselves that MC is not the only thing that can cause serious D issues. If you are having D, though,
without major problems with cramps and general abdominal pain, I would guess that you probably do not have C. diff.
I can't get the sorghum issue off my mind. When did you start using sorghum? If it is 22.2% of the flour mix that you use regularly, then it, (or any other component of that blend, for that matter), could certainly be contributing to your deteriorating condition. You might even be mildly intolerant of two or more ingredients in that flour blend. Anytime we use a product, (even if we make it ourselves), that contains a long list of ingredients, we are magnifying our chances of ingesting an item that is "contaminated". Even if all of the ingredients are safe, (if pure), all it takes is for the manufacturer of only one of those ingredients to slip up, and we are "doomed". If you have any experience with probability and statistics analysis, you should recognize that the odds of an adverse event really begin to escalate, as the number of variables increases. With 7 ingredients in that flour blend, I would be very, very nervous, using it.
Manufacturers slip up, much more commonly, than most of us realize, I believe. Look at McCann's Irish Oats, for example. For many years, they were the darling of the Celiac world, and were held up as a shining example of the purest oats in the world, safe for any celiac diet. How did they earn that reputation? Apparently, simply by claiming that their oats were pure, and no one ever challenged that claim. Then, someone rocked the boat, by deciding to actually analyze the purity of McCann's products, and lo and behold, it turned out that they had some of the most contaminated oats in the industry. They no longer advertise gluten-free oats, of course. Now they say:
Are McCann's Oat products gluten free?
All McCann’s oat products are processed in a dedicated oatmeal mill that handles only oatmeal. In the supply chain between farm and mill, there is a possible cross contamination with other grains, such as wheat and barley but we reckon that the level of non-oat grains to be less than 0.05%. Cleaning equipment within the milling process would remove the vast majority of these grains along with other elements such as stones, straw etc.
http://www.mccanns.ie/pages/faq.html
But that's 500 parts per million, (ppm). Most of the world uses 20 ppm as the limit for gluten-free labeling. As I recall, the random tests found that their products contained around 200 ppm, (more or less) - enough to make a large percentage of gluten-sensitive people very sick, if they ate these products regularly. In the tests that were done, if I recall correctly, plain old Quaker Oats turned out to be much safer than McCann's, and they never even claimed to have pure oats. Anyway, I hope you see the risk - it's not a perfect world, and if we don't use statistics to our advantage, we can become very vulnerable to the risks involved.
Also, if I were in your situation, I would take a very, very careful look at everything that I added to my diet, during that 3 month period of remission. Something was changed, during that time frame, to stymie your progress. At least, that's what I suspect.
Tex
Visit the Microscopic Colitis Foundation Website
Bummer, for sure!
