Hi Scout,
I agree with GrannyH about having to personalize your treament. It sounds as though you're making good progress, and you may just need more time, to allow your gut to heal - it takes a lot longer than most people realize, (especially GI docs). Now to address your questions:
Scout wrote:1. I've been gluten-free ish for 6 months, but in the last two weeks have really cracked down on looking for hidden gluten. Going g-f made a big difference; even had a couple of months of Normans! But I'm still in a pattern of D for a few weeks, followed by soft stool for a month or so; the attacks are certainly less intense than a few years ago when I was surviving on sourdough toast and fiber!
my question is: how rigorous are others about cross-contamination (toasters, panini maker etc.)? And how rigorous are you when the label says that the product may have been processed on machines in contact with wheat?
You have to be very rigorous - a crumb can be enough to trigger a reaction for some people. Going low-GF, or "almost-GF", for example, may not result in any significant healing of the gut, meaning that when you went totally GF, you were probably starting from square one, in the healing process. IOW, it takes very little gluten, on an occasional basis, to keep the inflammation going, unless you are one of those who are fortunate enough that Entocort can completely control your symptoms, regardless of what you eat. Most of us are not that lucky. Whether or not I worry about the warnings about being processed on machinery that sometimes processes products containing wheat, depends on the product, and what I know about the manufacturer. Many manufacturers put those warnings on their products, just to cover their butts, but in
some cases, those warnings should be heeded.
Some kitchen equipment is more likely to cause cross-contamination than others. You should have your own dedicated toaster, that no one else uses. You should also have your own jars of peanut butter, jelly, mayonaise, mustard, etc., because if someone touches a piece of bread with their knife or spoon, while spreading the item, and then sticks the tool back into the jar, to get some more, that jar will probably be contaminated with bread crumbs, (gluten). Never store your "stuff" where someone might work above it, and drop bread crumbs, etc., into or onto your food or utensils. Be careful about baking pans, especially, because gluten often bakes onto them, and may not be completely removed during washing. Any cooking or mixing containers that have cracks, or hard to clean crevices, are also risky to use, if they are ever used for foods that contain gluten.
Also, when the GF diet brings good results for a while, and then symptoms return, that is almost always a signal that you have additional sensitivities, that are "discovered" by your immune system, after the anti-gliadin antibodies diminish, and they no longer flood your system, (thus masking other antibodies). In order of most likely to cause problems, the main intolerances for someone with MC seem to be gluten, dairy, soy, eggs, corn, yeast, etc.
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Scout wrote:2. In the last week, I've eliminated diet coke ( :crying: ) and all artificial sweeteners, stopped using sweetened non-dairy creamer (in favor of almond milk and organic honey in my coffee), and I've reduced coffee intake from about 5-6 cups per day to 2-3. I noticed a slight improvement but then had ONE SCOOP of vanilla ice cream on Friday night and have been under mini-siege since; thinking I should explore dairy.
my question is: Should I eliminate both lactose and casein, and what's the difference between the two? Can I have one sensitivity w/ o the other? (I seem to be fine with low-fat, hard, and feta cheeses.)
Avoiding artificial sweeteners is a very good idea, because many of us react adversely to them. Lactose is the primary sugar in milk, and casein is the primary protein. The difference is that you may not be able to properly digest lactose, anytime that you have enteritis, (intestinal inflammation), so it will pass undigested into the colon, where it ferments, creating gas, bloating, cramps, etc., but most of us here are actually
sensitive to casein, (meaning that it can cause an autoimmune reaction, similar to gluten). When we are sensitive to it, it will actually create inflammation, and cause damage to the gut, much like gluten. (It has been shown to cause villus attrophy in the small intestine, similar to gluten, for some celiacs, also.)
Lactase, (the enzyme that the body uses to split the sugar lactose), is created in the brush border region of the small intestine, and anytime enteritis is present, the production of lactase, (and eventually other enzymes), slows way down, and can even cease completely, in some cases. This causes what is known in medical circles, as temporary lactose intolerance, (though it's not a true intolerance - it's simply the inability to digest lactose). Whenever the enteritis is resolved, then lactase production usually returns to normal. IOW, virtually everyone is lactose intolerant, when their GI tract is upset, even in cases of the flu, for example. On the other hand, only those who are truly casen-sensitive, will react to casein, (IOW, a case of the flu, will not make anyone casein-sensitive).
Scout wrote:3. I'm doing the 8 pepto tablets per day self-clinical trial for up to 8 weeks; will let you know results!
The fact that you are taking multiple meds, plus the diet, and are wondering if you are making progress, brings up the possibility that you have something in your diet that is causing problems, (such as casein, or soy, for example), or one of the meds might be causing problems. Anytime you are taking more than one med to treat MC, if one, (or more), is causing adverse effects, it can prevent the other med/s from working, and can prevent the diet from working, and you probably won't be able to tell which one is causing the problem.
Scout wrote:4. I'm reading a lot about grains/ sugars in general and plan to try the SCD first (as it's less restrictive than Paleo), but I'm wondering if anyone has tried a more conservative approach.
question: would it make sense to drop one grain at a time to see if that makes a difference? Biggest grain offenders in order of severity?
Avoidance of grains is the reason for the paleo diet. The SCD addresses that issue also, but it allows yogurt, which is loaded with casein, so that will not work for anyone who is casein-sensitive. Other than the casein issue, the SCD is a pretty decent diet for MC. If you drop one grain at a time, (and then resume eating it, if dropping it seems to make no difference in your symptoms), the usual result will be that you will probably not learn anything, or you will reach incorrect conclusions, since you cannot achieve remission by diet, unless you avoid
all our intolerances, (at the same time, not just one at a time). That's why the elimination diet is effective, while eliminating one suspect food at a time is rarely beneficial.
The "worst" grains are wheat, barley, and rye, and all hybrids of these grains, and their close relatives, (they are all equally problematic), followed by oats, and then corn. Millet and amaranth are somewhere in between. Rice and quinoa are the least likely to cause problems for most people, but remember that there are always individual exceptions.
Scout wrote:5. Finally, I know this is a personal decision, but I'd love to hear people's thoughts on medications: when is enough, enough? I am in my early thirties; I am a full-time teacher with dogs, a husband, and usually a ton of energy. But I am fatigued--napping two hours every evening--and
I'm wondering is there a sensible approach with meds and diet that minimizes side effects and long-term effects?
A combination of the diet and Entocort is, (for most people with MC), the most effective way to reach remission as soon as possible. At your relatively young age, IMO, lifetime use of a corticosteroid, or any immune system supressants, would be a very bad idea. IOW, after your gut heals, you should be able to discontinue the use of any meds, provided that you have eliminated
all intolerances from your diet, and you continue to keep them out.
You can remove any doubts about whether or not you are sensitive to certain foods, by ordering a stool test kit form Enterolab. That usually saves time for most people, but it's not necessary, if you do the elimination diet correctly.
Tex
) and all artificial sweeteners, stopped using sweetened non-dairy creamer (in favor of almond milk and organic honey in my coffee), and I've reduced coffee intake from about 5-6 cups per day to 2-3. I noticed a slight improvement but then had ONE SCOOP of vanilla ice cream on Friday night and have been under mini-siege since; thinking I should explore dairy.
That obviously negates the multiple med concern. There's nothing wrong with using the Pepto treatment in combination with the diet - that's the way that Dr. Fine originally intended it, and it is usually pretty effective, (about 85%), so long as you're aren't sensitive to the bismuth subsalicylate in the Pepto-Bismol. Theoretically, once the Pepto regimen is over, you shouldn't need any further meds - simply avoiding your food intolerances should be sufficient for maintaining remission, indefinitely.
I think I'm going to try the lab route. And I made my husband read your post, and I'm finally getting my own toaster, cookie sheet! He's from Houston, so from one to another, he trusts another Texan 
(And the same can be said about Scout's prior GI doc. 
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