After EnteroLab testing, my husband discovered that he has a corn intolerance, along with gluten, dairy, eggs and oats. Corn was the only thing that he hadn't been avoiding, so we cut that out, and he started on Entocort at roughly the same time. After about 2 weeks, he started to notice a positivie difference. After a month or so on the steroid, he started having C and cramping, which he associated with the steroid. A couple of weeks ago, he stopped the Entocort and the C/cramping stopped. Since then, he's been pretty good, with only a couple bouts of severe heartburn, and only one day of D, which we think we can trace to some rogue corn in rice cakes, or peas, which he doesn't eat often. He's having a decent case of heartburn now, which at first he thought was from overeating, but then it's returned, and the only thing I can link it to is BBQ sauce that has corn syrup in it, but he seemed to tolerate it fine while on Entocort. Which leads me to my questions:
We cut out the main corn players: pure corn, cornstarch, cornmeal, corn syrup, etc. What I'm concerned with is how much we're being fooled by the steroid...if he was getting away with eating the corn derivative products, which I know is totally possible. I just feel very overwhelmed with how do you know if, for example, applesauce is the culprit or ascorbic acid is. How can you possibly figure these things out, when they're associated with a long list of ingredients? Also, how long will Entocort stay in the body and mask reactions? I'm not shocked that the BBQ sauce would bother him, we both knew he was cheating by eating it, I guess I'm worried that it's not the only thing bothering him.
I really want to be positive, but I'm just really scared for him that the heartburn is a precursor to the D and that his remission is a fluke.
Thanks,
Lisa
P.S. Sorry if this is very rambling and confusing; I'm a little wound up.
I hear you. Until we've been in remission long enough to develop a feeling of confidence, we tend to be extremely apprehensive about any and all symptoms, because the balance between active flares and remission can be delicate until the intestines have enough time to do some significant healing. Entocort does indeed mask symptoms, and some people with MC can eat virtually anything while on it, while others have to very careful with their diet. We all have different sensitivity levels, and different response rates to Entocort. Almost always, when the Entocort is discontinued, additional food problems show up that were masked by the drug.
We have found by experience that quitting Entocort cold turkey can cause a rebound effect (due to a rapid rebuilding of mast cell numbers). That's why we usually recommend a slow taper when discontinuing it. The dose can be dropped to 6mg and 3 mg per day relatively rapidly, but beyond that, the slower the taper, the better the odds of remaining in remission. Since he's already stopped it completely, though, he might as well see what happens. Most relapses occur in less than 2 weeks, but corticosteroids tend to have a rather persistent residual effect, in general, with some lasting much longer than others. A general rule of thumb is that if he gets past the 8-week mark, he is probably home free.
I had to avoid all sources of corn when I was recovering, also (though I seem to be able to tolerate it just fine, now that I've been in remission for years), so I know how difficult it is to avoid. Corn is in almost everything. Avoiding gluten is a cakewalk compared with avoiding corn and all its derivatives. Most modified starch ingredients in this country are made from corn, as is citric acid, ascorbic acid, etc.
It sounds to me as though he is doing pretty well, and getting very close to licking this problem, but if he relapses, after regaining control with Entocort again, it may be necessary to do the final stages of tapering the dose very, very slowly, to prevent that rebound effect from causing symptoms.
Has he tried an antihistamine? For many of us, antihistamines can counter mast call issues and prevent lingering indigestion, abdominal pain, and even D that's caused by either histamines in the diet, or foods that trigger the degranulation of mast cells. Since discontinuing a corticosteroid allows a rebound of mast cell numbers, an antihistamine might save the day. Also, be sure he is getting enough vitamin D. Vitamin D is very important for preventing GERD and related issues.
FWIW, I couldn't tolerate most barbeque sauces and most other commercial sauces, either. For that matter, I still can't tolerate most of them. Commercially processed foods and condiments are loaded with landmines for most of us who have MC, even when the label looks OK.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Thanks, Tex. He is actually on an antihistamine. He had a bout with severe head congestion, causing motion sickness, and has been taking a daily dose ever since. I will look into getting him some Vitamin D. He's been off Entocort for 4 weeks now, so hopefully things will continue to hold steady.
Hi Lisa. I just started checking this part of the board ( instead of the main message board).I was wondering how your husband is doing. Tex did a great job describing how to taper off the meds. I am down to one pill every three days. It's slow, but doing pretty well.
I had another thought about the BBQ sauce. Tex is right about processed foods. Bur some of us react to tomatoes and tomato products. I am one of them. Now that i am doing much better, i can tolerate a little, but that may be a culprit.
