Relapse - ugh!

Deanna in CO · Post by **Deanna in CO** » Mon Jun 11, 2012 8:22 am

Hi all,

Well, after several weeks of doing significantly better, I seem to have gotten worse again. I'm not back to where I was in November - for which I am hugely thankful! - but yesterday and this morning I am having to go 6-8 times a day and it's mostly "puff poopie" at best, and it's urgent and I have much less control. :(

I have a couple of suspicions of what may have caused it and want to run them by you all to see what you think:

a) Hormones. I have often had more trouble at certain times of the month. However, I am a few days beyond the time I usually have the most difficulty, and the first couple of days were fine.

b) Probiotics. I used to have trouble with WD taking even one probiotic pill each day. Since I started the 5-day prednisone burst (May 25), I've been able to take one without any problem at all (in fact, I think it's been helpful). But the day before yesterday I forgot to take it in the morning, so I took it at night, and then took another yesterday morning.

c) Salad. We had guests over Saturday evening and they brought green salad. I had a small serving in an effort not to be rude. I was very careful to use a safe dressing. I haven't had much fiber at all in the last several weeks, though I think I did have one salad and it didn't cause this kind of trouble. (BTW I was able to dump the psyllium at the same time I added the probiotic, while I was on the prednisone, so I'm not getting that irritant any more.)

d) Soy. After having gotten only a 5 on soy on my Enterolab tests, I thought I would give it a try. I used some Tamari sauce (pure organic soy, gluten-free) to season the chicken, and also some on my rice.

I've been around here enough to know that a negative Enterolab result after being on a "-free" diet can sometimes only be an indication that you've managed to eliminate that item from your diet so you are no longer producing active antibodies. At the time I did the tests, I'd been soy-free for about 3 months (and I'd been off most processed foods - so eating a lot less soy already - for about 6 months). Is it possible that in that amount of time I could have eliminated soy to the point that I could have gotten a false negative from Enterolab? Or is it more likely that one of the other factors is responsible for my trouble?

My family is exasperated with my effort to analyze exactly what might be responsible for causing me to relapse, so I'm very thankful for this list. I know you all understand. :)

Deanna

Post by **tex** » Mon Jun 11, 2012 9:16 am

Hi Deanna,

Bummer, but as you know, we sometimes walk a fine line with diet items. Sometimes we win, and sometimes we lose.

IMO, yes, it's certainly possible that your EnteroLab test for soy may have produced a false negative result because you had been avoiding it long enough for the antibody level to subside to a point below the trigger level for a positive test result. As you know, anti-soy antibodies decay at a much faster rate than anti-gliadin antibodies, and the length of time required for that amount of decrease depends on the starting value. Higher starting levels require more time to decay below the threshold for a negative result. Maybe your initial level (before you eliminated soy from your diet) was only slightly above the cutoff point (IOW, slightly above 10).

That said, virtually every scenario you mentioned could have caused the problem, so it's going to be very difficult to pin down the culprit with so many possibilities. There's even a chance that some other ingredient in the soy sauce may have caused the problem. The reaction could also be due to a combination of two or more (or even all) of the possibilities that you listed.

Sorry I couldn't be more helpful.

Tex

carolm · Post by **carolm** » Mon Jun 11, 2012 9:28 am

Deanna, I think you are doing a good job analyzing things from all angles. As Tex said, any of those scenarios could have been problematic. I've not had much success with probiotics but others have. If the salad had iceberg lettuce then it might have been too rough. Soy would be worth challenging I think since it can be so problematic.

Sometimes I've had to drop back to my baseline diet and start again. It's worth it.

take care,

Carol

Sue777 · Post by **Sue777** » Mon Jun 11, 2012 10:19 am

I can't help you at all in determining what caused the flare up but I can sympathize and understand your frustration and let you know that you're not alone with that. I drive myself nuts, probably almost every minute of every day, thinking about everything that goes in (and out) of my body while I'm in a flare up. There are just TOO MANY variables involved, though, and the timing of the reaction of some of them makes it even more confusing. I wish they could install an electronic monitor on us so that a red, yellow or green light would flash as soon as we ingest the culprit.

I think we get so desperate to get better that we try every and any thing we can think of to help and unfortunately then we never know which one did. (Or, in some cases, which one made it even worse).

I wish you luck and a speedy remission. It still amazes me how this can totally consume us and take away our freedom. I will never take it for granted again!
Sue

Deanna in CO · Post by **Deanna in CO** » Mon Jun 11, 2012 4:17 pm

Thanks so much for the support, y'all (sorry - sometimes my inner Texan comes out even though I only lived there a few years - but nothing quite takes the place of y'all, you know?). :)

Wayne, thanks for confirming at least that I seem to be thinking along the right lines. I'm still new enough at this that I sometimes wonder if my thought process is correct - it sounds like it is and I just need to keep at it.

Carol, I had sort of intended for this to be a soy challenge - unfortunately I didn't realize all the other factors involved until I started having trouble, and by then it was too late. I definitely need to do a more formal challenge where I control the other factors better.

Sue, I agree about the monitor! Wouldn't that be nice?!

Deanna

Leah · Post by **Leah** » Mon Jun 11, 2012 6:20 pm

Sorry Deanna. I had a slide a while back when I went to someone's home for dinner. I had too many things to really know what it was, but like Tex said, the combination of a few things could have been just too much for your gut to handle. I don't remember whether you are taking meds, but I upped my Entocort dosage for a few days to get it under control. I hope yours is short lived.

Leah

MaggieRedwings · Post by **MaggieRedwings** » Tue Jun 12, 2012 4:59 am

Morning Deanna,

Sure hope you are feeling better and that this flare subsides. It could have been any one of the things you ate and I know the problem with trying to be nice when people bring food to a party or dinner. You hate not to eat any of it but every time I do, I pay dearly for it.

Love, Maggie

Deanna in CO · Post by **Deanna in CO** » Tue Jun 12, 2012 7:54 am

Hi all,

I guess I really am healing. Yesterday morning I was still feeling rather badly, but by yesterday afternoon (after having gotten back to a more tolerable diet) things were improving, and this morning I am much better. At some point I will do a soy challenge, but I'm going to wait until I'm confident that this episode is over.

Thank you all so very much for your support.

Deanna

Leah · Post by **Leah** » Tue Jun 12, 2012 9:13 am

It's great that it was a short lived flare. That is a sure sign that you are healing :)

Post by **tex** » Tue Jun 12, 2012 9:25 am

As we heal, we tend to recover faster.

Tex