My downhill pattern

[robinc2525]

I have noticed a pattern now when I start to go downhill. It starts with hearing noises right after I eat, like within minutes, coming from my stomach. That day or the next my side pain re-emerges (discomfort under the rib area, right side) and then the next morning D. I have had D for 4 days now, only in the morning, usually twice. In the past few weeks I started eating cashew butter or almond butter (plain, no sugar) on my rice cakes, and also having plain chips for snack. Other than that I eat only chicken, rice, red potatoes, olive oil, coconut oil and sometimes ground turkey. I also had haddock once last week but I had been staying away from fish because I was worried about histamines. I have had the Enterolab tests and the only thing I was high on was gluten which I have been off 100% for 6+ months.

So it seems like since the nut butters and chips are the new things those must be taking a toll on me. But I don't understand why. I wondered if it was the fat content but wouldn't the D be gone by now (I haven't had nut butter or chips since the weekend)?? Also I had the Enterolab fecal fat test and it was normal.

I take Uceris (budesonide 9mg) still and I have never felt like it has done anything for me. I hear of it "masking symptoms" here but it doesn't seem to do that in my situation (for example, with the nutbutter/chips). I have been very strict with my diet since April (after my colonoscopy) and even before that I had given up gluten.

I guess I wonder if my problem is more in my stomach than in my intestines. My stomach seems angry now after I eat and I don't know why that is. I wish I knew what it wanted from me :(

[tex]

Hi Robin,

If you can notice symptoms (such as the abnormal sounds) within minutes after eating, you are very likely having an inappropriate mast cell response (mast cell activation disorder) that begins as soon as the offending food touches the mucosal tissue in your mouth and esophagus, and the effect continues as the food collects in your stomach. (Despite most GI specialists' opinions to the contrary, MC can affect any part of the digestive tract, from mouth to anus).

Not much is known about the physiological dynamics of mast cell degranulation, other than the chain of events that it unleashes. There doesn't seem to be any definitive research concerning the long the reaction continues, once it is initiated, or appropriate limits for normal functioning. Our own accumulated experiences here among the members of this board suggest that that once an episode is triggered, it can last for an indeterminate length of time. Sometimes the reaction is short (measured in minutes or hours), and sometimes it seems to last for weeks. Apparently there is much more to this than meets the eye.

Note that much of the stomach's role in the digestive system is determined by histamine. Histamine is released from mast cells as food is detected upstream of the stomach, and as the histamine attaches to H2 histamine receptors in the epithelia of the stomach, the H2 receptors are activated, which stimulates the parietal cells to increase the production of gastric acid, in order to facilitate the digestive process. Histamine also relaxes the smooth muscles in the intestines, which helps to regulate GI motility and intestinal secretions. When functioning properly, it also inhibits antibody production (such as T-cells and cytokines), and causes vasodilation (relaxation of the walls of blood vessels), in order to increase blood flow for improved digestion. So obviously, when things go wrong with histamine (or mast cell degranulation), the situation can get very complicated in a hurry, and a lot of things can go wrong, which may or may not take a significant amount of time to return to normal.

From my own experience, the nut butters seem to be more likely to cause problems than chips (such as those made from corn and potato). I can't handle any nut butters at all, without GI issues, but (plain) corn and potato chips are fine.

Uceris comes highly recommended (mostly by the manufacturer, and a few doctors who trust their drug reps), but I am still waiting for the first member to post about how Uceris worked so much better for them than Entocort.

Tex

[Leah]

Have you tried taking antihistamines? My symptoms are so much better when I take an Allegra ( non-drowsy) in the morning and Benadryl at night. Now that I am doing so well, I don't always take the night time drug, but these make a hige difference for me. I also have on hand a supplement called Histame which helps the body rid itself of excess histamines which I take when I might be eating a meal that is questionable.

I hope you figure this out soon.

Tex, is there a difference between Entocort and Uceris? If there is, you might want to ask for Entocort Robin. Good luck
Leah

[robinc2525]

Leah, after I read Tex's message I came home and took an Allegra. I have tried the Allegra and Histame in the past (after following/reading your posts) and I didn't notice much of a difference. However, at the time that I took them I was not having D or stomach rumbling, I was just trying to figure out the last piece of the puzzle because I still had urgency and loose bm's (though I usually only go in the morning). So now something has set me back and I am going to try it again. My Allegra is 24 hour, is it okay to take the Allegra in the morning and the Benadryl at night?

As for Uceris, as I understand it is the same medicine but coated differently so it dissolves in a different part of the colon. Apparently based on my biopsies my gastro thought it would be better for me. I have an appointment with her in a week so maybe I'll talk to her then about switching. Actually I'd rather go off the Uceris altogether and see where I am. If it really hasn't been helping then I am where I am due to diet alone and I'd rather continue since my symptoms somewhat manageable (though psychologically I think this all may drive me crazy!).

Thanks to you both, your insight is so appreciated.

Robin

[tex]

Tex, is there a difference between Entocort and Uceris?

If I understand it correctly, the primary difference is that unlike Entocort, Uceris does not become activated before it reaches the colon, and it treats the entire length of the colon. IOW, it has no activity in the terminal ileum. This means that it should carry virtually no risk of showing any significant degree of absorption into the bloodstream, thus side-stepping most of the the risk of side effects associated with Entocort.

The downside is that for most MC patients, the disease seems to be centered in the ileum and the right-side colon, with less activity in the transverse and left-side colon (of course this can vary among patients). Uceris is labeled for UC, because UC is typically most active in the left-side colon (where Entocort typically has reduced effectiveness).

Since Uceris has a reduced risk of side effects, most GI docs just assume that it is a better (safer) treatment for MC. While Uceris certainly appears to be safer (than Entocort), I disagree that it is a better treatment for MC, primarily because it fails to treat the terminal ileum. The vast majority of GI specialists don't seem to even realize that the terminal ileum is involved with MC. I am guessing that in the long term, this failure to treat the terminal ileum will prove to be Uceris' Achilles' Heel, as far as treating MC is concerned, and Entocort will eventually be recognized to be a more effective choice for treating MC.

Tex

[tex]

My Allegra is 24 hour, is it okay to take the Allegra in the morning and the Benadryl at night?

Yes.

When treating severe cases of urticaria, for example, allergists commonly prescribe up to 4 times the labeled dose of antihistamines, and they mix and match different types of antihistamines in order to achieve the most effective control of a patient's symptoms. Just be careful that you don't go too far overboard on dosing, because in trials, at somewhere around 10 times the labeled dose, many patients seem to begin to experience toxic effects from most antihistamines.

Tex

[DebE13]

Leah, how long did you take the combo of allegra and benadryl before you noticed a difference ? Just one pill each?

[Leah]

I noticed the difference in one day! I took one Allegra in the AM and then 2 Benadryl before bed. Now I play with the amount of Benadryl ( sometimes I don't take any) depending on what I have eaten. I do sleep great when I take it though :)

Leah

[kayare]

I, too, noticed a huge difference with Benadryl at night. The result was immediate. i started with one, but U i I soon increased it to two. I decided today to add a morning Allegra. I'm interested to see the result.

I hope this helps you!

Kathy

[DebE13]

Hmmm, maybe i havent tried enough to notice anything. I will have to try it at a higher dose.

[Gabes-Apg]

Deb, in the mast cell section I am pretty sure there is a chart that shows what symptoms are H1 and what symptoms are H2, the symptoms will only abate if you are taking the right blocker....

And the other element trying to figure out and minimise the triggers.....

Life with mc is like and endless maze, just when you think you have made it out, you realise you are a new maze.....

[DebE13]

Thanks Gabes, i will have to revisit that chapter. Ive been alternating allegra and zyrtec as needed for seasonal allergies only taking one pill a day. It would be worth a try.