opinions needed on possible cause of flare-up

goldgeogirl · Post by **goldgeogirl** » Mon Apr 30, 2012 2:43 pm

My husband has been df/ef for 2 years. In January he went gf and had a great two months and has been suffering for the last 2 months. He's been sf for about 2 weeks now. A week ago, we started him basically eating only chicken and rice/potato, with one evening having a waffle made from gf Bisquick. He was good for 4 days. On the evening of the fourth day, he ate So Delicious coconut ice cream. That night he awoke with cramps, and the next day was plaqued with D. Since then, only chicken and rice, and he's still cramping. Luckily, he's awaiting Enterolab results. I feel like we can't trust anything anymore. It used to seem like it took 2 days for bad foods to react. Well, when we try to trace it back 2 days, it leaves us quite puzzled; we can't find a consistent culprit. We say, "Maybe it's this or that," and then I cut him off from a bunch of things, but he still flares. So here are my list of possible culprits, and I was hoping for some insight:
1. gf Bisquick?
2. Coconut milk/ice cream. The ice cream contains fiber (6g per 1/2 c. no idea if that's enough fiber to cause irritation), the milk does not. I bake and cook with the milk. It would have been in the waffle, as well as some muffins I made. I've read some things saying that coconut milk is the ticket, and others warning against D.
3. I made various chicken marinades which utilized lemon juice, orange juice, garlic, and canola oil. I made one with pineapple juice and honey after his flare up.
4. Canola oil

He had one potato last week, but didn't react until 4 days later. He started eating rice, as well as chicken, 4-5 days before the flare.

He is currently on Asacol. We see his dr on Friday, and I will ask about Entocort. Has anyone ever inquired about Humera? I know it's for Crohn's, but I'm curious.

I know it takes time to recover from a flare, but today is worse than yesterday. It frustrates me to try so hard and still not figure it out; it makes me feel like I'm poisoning my husband.

Post by **tex** » Mon Apr 30, 2012 3:32 pm

goldgeogirl wrote:A week ago, we started him basically eating only chicken and rice/potato, with one evening having a waffle made from gf Bisquick. He was good for 4 days.

I'm going to guess that the Bisquick is at least part of the problem, though there could be other issues, as well. If you check a few celiac boards, you will find that reactions to Bisquick are rather common, unfortunately. One or two members of this board who have been bold enough to try it have also reacted adversely to it. General Mills needs to go back to the drawing board on that one, apparently.

goldgeogirl wrote:Has anyone ever inquired about Humera?

We have at least a couple of members, (who no longer post), who were/are using one of the ati-TNF drugs, (Humira, Embrel, Remicade, etc.). They were using the drugs for other purposes, such as psoriatic arthritis, RA, etc. No matter how hard they worked to alter their diet, they were unable to ever attain remission from MC.

One clue was that every time they got an infusion of the drug, it made their MC symptoms much worse for a few days or so. IMO, the drug was the cause of their MC, (because they were taking the drug before they developed MC), but I was never able to convince them to discontinue the drug for a few weeks, to see if their symptoms would resolve. They were afraid to go against their doctor's recommended treatment program, for fear that their psoriasis or arthritis would become worse.

The fact of the matter is, though, most members here who have adopted the diet have found that their psoriasis, arthritis, etc., either improved dramatically, or completely resolved after they had been on the diet long enough for their digestive system to do some significant healing.

At any rate, based on the personal experiences of a couple of members here who have tried it, my opinion is that the anti-TNF drugs are not effective against MC.

We have 2 or 3 members who are using another immune system suppressant, Imuran (azathioprine), and they seem to be satisfied with the results, but at least one of them, (who posts fairly regularly), has discovered that he still has to follow a rigid diet plan at all times, and use Entocort occasionally whenever a flare erupts. However, he is taking Imuran because he also has Crohn's disease, and Entocort is not effective in the jejunum, where his Crohn's inflammation is centered. The fact that the Entocort helps to suppress a flare in this case makes me wonder if his clinical symptoms may be due to MC, rather than Crohn's, because of the fact that budesonide is most effective in the terminal ileum and the colon, but maybe his Crohn's is active in his colon, as well.

Another member, (who is currently away on a cruise), has reported good results from Imuran, and she has only MC, (no Crohn's). As far as I am aware, she still follows her diet program. She should be back in a week or so, to report on her experiences on the cruise.

Tex

Leah · Post by **Leah** » Mon Apr 30, 2012 4:46 pm

So sorry to hear about his condition. I am just coming out of a flare that lasted almost two weeks. I had stepped down my dose of Entocort prior, but had to go back up to 9mg. with the flare. Mine ( I think) was brought on by a chicken dish I had in a restaurant. It was fried, so maybe too much oil? It's very hard to pinpoint what is the culprit because it could be ANYTHING and everyone is different. I know that some of us don't do well with citrus and you've been using it in a few things. I tend to agree with Tex, the Bisquick is probably at least part of the problem. The thing is, once his intestines get inflamed again, many more things can be aggravating to it... which puts off healing. Hopefully, his Enterolab results will shed some light.

Keep us posted
Leah

goldgeogirl · Post by **goldgeogirl** » Mon Apr 30, 2012 5:14 pm

Thanks, Tex and Leah.

I will cut out the Bisquick. It was too good to be true, I guess. There were some other flare-ups where I had made chicken coated in Bisquick and served potatoes and carrots as well, which really threw me for a loop. We've cut out carrots since then because we didn't want to believe it was the Bisquick.

Thanks again,
Lisa

Sheila · Post by **Sheila** » Mon Apr 30, 2012 6:45 pm

So sorry about the flare. I had one a few weeks ago caused by gluten in Caltrate and my doctor told me to take!! I should have paid more attention for sure.

You mention eating SO coconut ice cream. This ice cream uses guar gum and that definitely caused D for me and is known to cause it more so than xanthan gum. I would eliminate the ice cream and anything with guar gum until you know for sure what is causing the flare.

Sheila W

Christine. · Post by **Christine.** » Mon Apr 30, 2012 8:37 pm

Asacol did me NO good. For me diet was enough but I know when I expand the foods I eat I take a chance. I've been fine for several weeks ( once a day...no problems) but this weekend I was not home, tried my best to eat safely in restaraunts, and today I am paying the price. The lab results will give you a direction and hopefully you will establish an eating plan that keeps him on the straight ad narrow.
Chris

goldgeogirl · Post by **goldgeogirl** » Tue May 01, 2012 11:12 am

Thanks for the info on guar gum and Asacol feedback.

I have 2 brands of coconut milk, one has guar gum and the other does not (some other g-gum that I can't remember). Maybe that's why the coconut milk is hit and miss.

Hubby started out on 6 Asacol, then was upped to 9, which didn't seem to make a difference. He's apprehensive about Entocort, hated being on prednisone, even though it worked, because of being a steroid. The difficulty with weaning off of Entocort has me nervous, but I'd like to think by then we'll have the bad players mostly figured out.

Lisa

Polly · Post by **Polly** » Tue May 01, 2012 11:22 am

I agree about the Bisquick.

Also, guar gum and Asacol are both no good for me. Goya makes a coconut milk without guar gum, but read the label carefully, because it also makes one with. They look the same! Gulp. Does your hubby know that only about 10% of the steroid in Entocort goes out into the body? - the rest stays in the gut, where it cannot cause sytemic problems. It's the biggest plus about Entocort.

Hugs,

Polly

draperygoddess · Post by **draperygoddess** » Tue May 01, 2012 11:34 am

Like many here, I cannot do the GF Bisquik. I also have problems with the So Delicious coconut ice cream if I eat too much of it. And yes, citrus can be irritating, especially if he's already reacting. I haven't cut citrus out completely, but I go easy on it and avoid it altogether if I'm already having problems.

Hope he gets to feeling better soon! have you ordered your detective outfit yet?

goldgeogirl · Post by **goldgeogirl** » Tue May 01, 2012 1:15 pm

Thanks, Polly, for the statistic. I did not know that...I will tell my husband!

Cynthia, I honestly feel like my husband is my own personal science project. Although, we must balance out pretty well. He tends to go with the flow and let whatever happens, happen, while I am pretty anxious, which drives me to action. If it wasn't for me, he'd be just living with his gut rather than trying to heal it, and if it weren't for him, I'd be a nervous wreck, bouncing off the walls.

I'm just really glad I found this forum. It was starting to feel pretty hopeless. While it's definately still stressful, I feel like there's still more things to try, thanks to so many suggestions. The biggest thing he needs is help keeping a positive attitude.