flaring--diet or entocort decision

[susan]

Hello everyone,

It's been a very long time since I last posted. I've been dealing for the last 11 months with a non-MC condition that has been really difficult and, blessedly, I've been enjoying an MC symptom free period for a long time now--but no more.

I was Dx'd with CC in Feb. 2009 and after about a month on Asacol, with no help, I started an entocort protocol in March 2008. I stayed on entocort for 3 1/2 months with very good response in the first week, to two pills in 4 1/2 weeks because of terrible consitpation, to 1 pill in another two weeks because of bad sinusitis and rhinitis, and then to 1 pill every other day after about 6 weeks on 1 pill. Throughout, I had no recurrence of D, and mostly dealt with C. when I finished entocort at end of June, I then enjoyed a completely symptom free period for seven months until Feb. 1, 2010.

I started GF and DF diet Jan 1 2009, before Dx. After getting enterolab testing back in June, I also made sure to eliminate soy, yeast and eggs, although I only consumed those by accident previously. So, I have been very careful about GF, DF, EF, SF, YF at least since June and gluten and dairy free for much longer time. I drink only decaf green tea and water. With the seven months without symptoms, I really thought I had found a diet solution. I was able to eat everything within the diet framework--all meats, veggies, fruit, and non gluten grains. I didn't eat much corn, but did not find it to be a problem when I did. I did eliminate legumes about three months into my symptom free period, when I had a little reaction, without D, to home made black bean soup. So, legume free since October, as well.

Then, wham. Feb 1 I started loose stools and rapidly it became D, although I still only go twice a day at most, mostly just once a day in the early AM. I switched to soft food--mostly rice, chicken, veggies cooked to death with some potatoes and banana occasionally and I have not strayed from that for the past three weeks. I started taking Asacol Feb. 7, but as expected, I saw little to no improvement--I was just hoping it might be enough to turn things around.

I've been looking for what might have triggered the flare. I never eat out and eat no processed foods, except for a rice cracker and using GF flours for pancakes, etc. I did start using a GF bread that I did not make at home--while eating it I had no immediate reaction at all, and I probably ate a slice every other day for 5 weeks with no problem until the D suddenly began. I had a bad head cold in January and I took some immune boosting supplements. One of those supplements was in a base of maltodextrin. I knew that could be gluten contaminated but I decided to take the chance--for other health reasons. I have had quite low total IGg since last summer. The D started about 10 days after the cold started.Also, I am under extreme stress with my other health condition, and I actually felt about two months ago, that even though this is not life threatening, I passed a point of patience and calmness in my struggle to get it resolved. I won't bore you with details, as I just don't want to keep whining, but my stress level has been super high.

I'm am at a crossroads now, and trying to make my decision about going back to entocort. I don't want to--I always wanted to gain control through diet. I'm afraid my stress with my other condition may totally interfere with the healing qualities of diet. I just don't know. I've read extensively about the SCD and the Paleo diet and believe the Paleo diet would be my next step--I just be moving to no grains and potatoes from what I was eating in the past.

What stumps me is why I never reacted to anything but black beans ( I even was able to eat lentils) during the long period of being symptom free--first for three months with entocort, and then for seven months without it. I ate potatoes almost every day, and GF pancakes about once a week.I know I just need to make my choice and go with it. I also know that if I go totally Paleo, it will undoubtedly take a long time to know if there has been any positive effect. There's no way to tease out any other intolerances, I don't think, while my stools and symptoms are consistently the same and while I don't want to take a chance to introduce anything beyond what I'm already eating.

By the way, I'm a double DQ3--I have two copies of the exact same DQ3 gene.

I know you all know the frustration. I do want to make diet my treatment of choice and am happy ( well, maybe not happy, but willing) to cut out anything that seems to be keeping me from real remission.

Thanks for listening and considering my options with me. I've caught up a bit with the posts. You are all really amazing--so supportive and helpful.

Tex, I was stunned to read of your illness for the past few months. I am so happy that you are better and recovering, and I marvel at the inspiration you are. Keep getting stronger and better each and every day.

Thanks, everyone.

Susan

[ant]

Dear Susan

So sorry to hear of your flare. I am a relative newbie compared to you and just past the point of moving to 1 entocort a day. I had been on 3 for seven months and 2 for a month and a half. So I doubt I can tell you much. I seem to have had improvement after cutting out potato from an already GF, DF, SF, EF and legume free diet. I am taking a supplement called Boswellia. I have also been dosing up on vitamins and minerals intravenously (I was very low on these). I cannot take vit D intravenously, but take 6000 orally a day. But to be honest it is too early for me to tell if any of this is working.

I am sure other more knowledgeable advice will soon be posted,

Wishing you well soon, love ant

[Jan]

Susan,

I have been on steriods 3 times since diagnosed in '05. My first flare was definitely cause by stress due to my Mother's illness. I went on entrocort after severe D for several days. I was on it for less then 12 weeks. The other flare was caused by an overdose of popcorn. Those little hulls did a number on me and I couldn't get the D stopped with immodium. Again, I was on it less than 3 months.

If you do not want to go the steriod route, but just want to stop the D while you figure out what's going on, you might want to take 1/2 or a whole immodium daily. I love salads (and am trying to lose some weight) but they don't like me. When I eat one, I take 1/2 of an immodium with it. I don't have any problems the next day.

My other suggestion would be to write down everything you are eating every day. I know you are eating a restricted diet but something may have slipped in that you aren't aware of unless you see it in writing. The other thing to think about is have you added fiber into your diet. Most of us cannot handle fiber.

Hope this helps you get back to your success.

I pretty much follow the Paleo diet with some rice and potatoes on occasion. I am also not gluten sensitive so I also eat bread on occasion. Like I said, I'm trying to lose weight so I am taking as much simple carbs out of my diet as possible.

Jan

[Syl]

Hi Susan, sorry to hear things are not going well. Whenever I see flare and stress in the same message, I am sure that stress is implicated, maybe even more than diet, given everything you have already eliminated from your diet. Tremendous stress is something else. That is what brought about a flare for me in January. A couple of days of unbelieveable stress, and bam! watery D started with a vengence. I was lucky to have been able to bail out of the stressful situation, but the fallout (no pun intended) continued. The body takes its time stabilizing. Took me Imodium and reminding myself constantly that I was no longer in that awful situation before some form of peace returned. One other thing I did was take Imodium to plug me up, then take a healthy dose of probiotics so they stayed in my body long enough to work. With the constant D I think all the good bacteria are washed away in the tide leaving us vulnerable. Also I believe the body gets in the "habit" of dumping and turning this habit around is difficult. That's where the Imodium comes in. I was dx'd with LC several years ago, and flares are a couple times a year, always following some darn thing I've gotten myself into, and sometimes just life situations we don't have much control over. Extra sleep, meditation, peaceful walks, reminding ourselves that we do have value, try for acceptance of things we really cannot control. At my worst, I was down to eating boiled rice, canned chicken, jello, very little else. Still no help, and I felt weak and had kind of given up. I was losing about 3/4 of a pound a day. Then one evening my husband made himself a grilled cheese sandwich. The smell of that sandwich in my starved hopeless condition just killed me. I got up and made myself one (real bread) and thought what the H, and made myself a chocolate malt to go with it, and slugged it all down, waiting for the worst. First, it felt really good....I was satisfied and felt like a normal person again, like the old days. As a result, I had one session of watery D, took the Imodium and probiotics and waited. Nothing bad happened. I returned to a "normal" gluten free diet and things have just improved since then. Actually, they are normal now. I know this is a radical approach, but that food soothed me sooo much and literally calmed me down. I am NOT advocating that you try this because we are all different. Just pointing out that your nerves can wreak the most havoc of all. I am a big believer in gluten free. If I ate gluten regularly, I would have terrible unremitting heartburn, so I avoid it. Rambling here.....good luck to you, Sylvia

[Ginny]

Susan, can appreciate what you are going through and I am kind of looking for the same answers. I have not been at it as long as you have, but have had my first major setback and I really don't know how long to expect this to last. I've used Imodium for the last week and it stops it for a couple of days and then I started again with the 8-10 times a day of D. I finally took (7) Imodium and it quieted the gut down and this is my third day with a little BM but the gut is growling again as if to start the cycle again. I took Entocort for 2 1/2 mo and then was able to do it by diet. So, do you stick it out or do you go back to the meds??? I gotta work and I can't run to the potty every 1/2 hour!

I was so glad to hear Syl & Jan's responses and would like to know more from out PP. I am going to try an herbal remedy for intestinal support that has L-Glutamine and some probiotics. Have tried probiotics before and can't really tell if they make any difference at all. Also made an appointment with an acupuncture clinic for later this week.

I also had added back all sorts of insolubles with no problems or so I thought. I actually ate a couple of apples with the skins right before this started as well as eating at a restaurant that does not cater to our needs.

Life as PP is certainly a challenge! Ginny

[tex]

Hi Susan,

Thank you for the support - I appreciate it. I'm sorry to hear that you're having a persistent flare. You've already received a lot of good advice, and I agree with what everyone has posted here, especially about the stress. It is claimed, (by the "experts"), that stress cannot bring on an MC flare, but we are well aware that it can certainly cause a flare to be worse than it would otherwise be, and we believe that stress can also prolong a flare. Personally, I'm not so sure that stress cannot actually trigger a flare, for some individuals, who are more affected by stress, than others. Stress is claimed to cause heart attacks for "type A" personalities, so why shouldn't it be capable of triggering a flare from an inflammatory bowel disease?

Since you have double DQ3 genes, we have to consider the possibility of unusual food intolerances, (even certain paleo foods might possibly be suspect). Check your ingredient labels, (including vitamin supplements, etc.), for carrageenan and tapioca, (manioc), for example. Not very many of us are sensitive to those items, but some individuals with double DQ genes, are.

In this country, maltodextrin is virtually always made from corn. It can also be made from rice or potatoes, but if it were to be made from wheat, then "Wheat" would have to be listed on the label. Note that there is a loophole in the 2006 labeling law, that allows a product to be labeled as "Wheat Free", even though it might contain rye, barley, or oats. If a product contains one of those grains, though, it could not be labeled as "Gluten Free". At any rate, rye, barley, or oats, do not have to be specifically listed as allergens, according to the "simple language" requirement that covers the other "common allergens", (though the specific ingredient would have to be included somewhere in the ingredient list on the label, of course).

For example, if you look at breakfast cereal labels, any wheat ingredients will be explicitly mentioned in a statement that states something to the effect of, "Contains Wheat". Any barley, rye, or oat ingredients will not be specifically listed in that summary statement, though. Most cereals contain barley, in the form of "malt flavoring", and it will be listed as such on the label, but that's the only mention that will be made of it, because our esteemed legislators weren't "smart enough" to include barley, rye, and oats, in the requirement for "simple language" listing.

Good luck with tracking down whatever might be the problem. If there's no way to bring down the stress, that you're having to deal with, you might have to give some serious thought to a regimen of Entocort.

Tex

[susan]

Hi and thank you for your responses.

I really believe my stress level has a lot to do with what's going on now, and you've encouraged me to get back to stress management--meditation, more walking--and back to yoga class. The condition that I have involves hypersensitized cranial nerves, and there is nothing I can take to interrupt or reduce the 24/7 pain/symptoms in my head, and I, unfortunately, haven't been able to get to a path of acceptance on this. I just need to keep working at it. Someday, it is supposed to get better, but the neurologists have no idea when.

I haven't been using imodium too often and I am going to start to use it everyday to see if I can get some more relief than I have had. Also going to cut out potatoes and bananas and rice and see how I do for a couple of weeks.
I'm also going to give up on the Asacol in another week or so if nothing changes and I may try Boswellia. I have been taking probiotics.

Tex, I have a question about carrageenan and tapioca. I have been using small amounts of hemp milk every day since last August. It has carrageenan and I stopped it as soon as my stools got loose, but I'd been using it since August with no problem. The bread I tried had tapioca flour, and again I had it for 5 weeks before any reaction. Can reaction times be that slow?--I always thought a reaction would happen 24-48 hours after ingestion. Could there be a cumulative effect of these substances--like the tapioca, for example?

I have checked all my supplements and they all state they are free of my known intolerances.

I am really, really, really going to work on the stress level in the next few weeks and see what happens. I will consider the entocort if nothing improves over the next several weeks despite food changes and stress reduction efforts. Thank you all very much. I really appreciate your advice.

[Gabes-Apg]

Susan,
i feel your pain (or discomfort)

although i am not having a major flare, things are not right so i have reverted back to basics (gooey rice etc)

as per discussions on other threads on the main discussion board, i am certain that stress (most of it work related) is a large contributor to my current situation of my digestion playing up as I adjust to an eating plan that works for me and my MC

Good luck... it is a bugger there is no short cut or easy way!

[Bifcus16]

Hi Susan,

It took ~5 months before the effects of HRT showed up for me. But only days for stopping it to have an effect. I had dropped all supplements and darn near all food before stopping hrt did the trick.

I definitely feel there is a cumulative effect for some substances. Especially things like meds or supplements where you only take a small amount each day.

Hope you get on top of it soon.

Lyn

[tex]

Tex, I have a question about carrageenan and tapioca. I have been using small amounts of hemp milk every day since last August. It has carrageenan and I stopped it as soon as my stools got loose, but I'd been using it since August with no problem. The bread I tried had tapioca flour, and again I had it for 5 weeks before any reaction. Can reaction times be that slow?--I always thought a reaction would happen 24-48 hours after ingestion. Could there be a cumulative effect of these substances--like the tapioca, for example?

Hemp milk has carrageenan? Maybe that's why I have bloating, whenever I use it. I never considered myself to be sensitive to carrageenan, (since it doesn't cause me to have D), so for some reason or other, I never even payed any attention to carrageenan on the label.

This is mostly just my view of what happens, but IMO, when we introduce, (or reintroduce), a food into our diet that we haven't eaten in many years, we have no existing antibodies to it, so we have to "develop" the ability to react to it, by repeated exposures to it, with increasing levels of antibody production, in response to each subsequent exposure, until eventually we reach the point where the antibody production level surpasses our personal "threshold", above which, a reaction is triggered.

I did an oat challenge, a few years ago, as described in the topics at the following links, and the results were somewhat similar to what Lyn described about her experience with HRT. Basically, in a nutshell, it took about 6 weeks of eating oats, (twice a week), before the D started. Unlike Lyn's experience, though, it took another 6 weeks for the D to completely stop, after I stopped eating oats. Note that once I had fully developed my sensitivity to oats, though, and I had developed a residual "stand-by" antibody level, I would consistently react within a few hours after I ate them, on subsequent exposures.

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=5505

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=5530

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=5773

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=5890

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=6013

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=6036

Tex

[susan]

Hi,

Lyn--I've wondered alot about HRT. I was on progesterone when all this started a year and a half ago. I stopped then, but, FOOLISHLY, because of all my other stuff going on and encouragement from my naturopath about my other problems, I started progesterone again about 5 weeks before this flare started. I stopped it immediately but the flare has kept on. I think maybe the stress I'm under has made it impossible for me to get ahead of this. I also could kick myself for starting the progesterone again. Needless to say, that is the last of HRT for me--I had given it up many years ago in my mid 50s and only started again about two years ago at the urging of naturopath. I've since told her about the links with CC, but when I started it, I didn't have CC.

Ginny--good luck with your flare. It is a big adjustment, again, when you've had success with diet, and then suddenly it's gone and you are flaring. Just have to keep working at it and look forward to the day when we are consistently better.

Syl--boy, do I hear you about just wanting to eat something that you want to eat. Especially when you are eating next to nothing. I'd just like to get back to where I was. I was eating carbs/GF flours and I didn't miss too many things too much, except for yogurt. I think stress is the big culprit here--I hope I can get it under control.

Tex--so your experience and others I'm sure indicates that there can be a cumulative effect with certain foods that are producing antibodies. Hmmm. That makes me really suspicious of the tapioca especially. Since I used the hemp milk (it was Tempt unsweetened and it does have carrageenan) for six months before anything happened, I feel like maybe that was ok, but the tapioca flour in the bread was not. Anyway, both of them are out for now, and I think tapioca is gone for good--I might test the hemp milk sometime in the future.

Thanks, everyone for your help. I'll let you know how things go.