need to nag a little about my flare/looking for answers.

[harma]

Good morning everybody,

I am still in my flare and it stills goes up and down. I was doing better and than it got worse again. And that is what my question is about. I have to admit I find it at the moment difficult to stick to my diet. I am referring than to the brat diet (actually bract diet, I also eat chicken). Rice with apple sauce has such an exiting taste . But it seems with MC it's the choice between feeling well and very strict diet or have a bit more exciting meals, but having D too. For me it's going back to basic, and asking myself "harma what is more important to you, the food or feeling healthy", and than I know my answer, feeling okay. Dealing with MC demands a lot of self discipline I learned. I was able to keep that discipline for over one and half year. But seems to have lost it a little since the beginning of april (just to prevent any misunderstanding, I am still talking about gluten, soy, dairy, egg free, just expanding and experimenting a little). And what happens, a flare.

My question, last weekend my flair was real bad and I went the BRAT diet and I very fast got much better. But than, I expanded the diet a little (carrots, one of my tin fruits) and it got worse again, something in between, mixture of D and solid pieces. Until yesterday morning. On Friday evening I went out to an international gathering here. Was a good night, had fun, danced, made some new (potential) friends. But also faced, I pay a price for evenings like this. I couldn't sleep that night (my stomach, bowels) and in morning two times big D. I only had two apple juices that evening. Made my afraid, because of my disease I have to live a quiet life? Not to much exitement and late nights out?

So yesterday I went back on a BRACT diet, yesterday was only green tea, apple sauce, rice and chicken. I slept okay and this morning my BM's were okay. Not 100% normal but a lot of small solid pieces and no traces of D.

What I am wondering about now, does this mean, the effects of the BRACT are so quick, I only have a minor flare? Or must there be something in the food in the last weeks, I am reacting too. That as soon as I add it to my menu, I will get an instant reaction.

I have decided to keep a food journal for a while. Will stick to my BRACT diet for a couple of days and than add ingredients one by one to see what will happen (and than only those things I used to eat over the last one and half year).

Do others here recognize that only on food ingredient or one food item made a difference to them in a flare or no flare. And having results within one or two days?

But also I am struggling with the influence of stress. Since March 18 when I left my house in Groningen, was a restless time. Mostly because I had not my own place for almost two months and was on the move all the time. Having not my own place and especially not having my own bathroom (this is even more important than having my own place) is big stress for me. Because for going to toilet (the BM's) I need privacy. I don't want other people to notice that when I am at the toilet doing the BM's, I don't want them to hear me, smell me, know how long I am in there, or find any traces of me while I was in there doing my business (all this only with BM's)

But the strange things, once I finally got my own place with not one, not two, but three private bathrooms. , than things got really bad.

I really try to analyse this, what is causing all this? The stressful situation (having no private bathroom is very stressful for me) or the food things. Stupid thing is, when things get stressful for me (the stress of things having no control of, not the stress of coming back here, that excitement), I get problems in sticking to my diet 100%. Like I don't care anymore and start drinking those lemon/mint drinks, drink coffee, eat candy (but again always gluten, soy, dairy free). Doing things while knowing they are bad for me.

Do others ever have setbacks in their MC diet regime? That you are so fed up with it, or other things in life make it difficult and than pay the price with a flare.

Thank you for "listening", just needed a place to think out loud, share my blabla and analyse it all a little

[Zizzle]

Hi Harma,
I think i'm feeling similar to you, and i haven't restricted my diet as much as you. I seem to be in an endless loop of mini flares. I think i get gluten or dairy cross-contamination at least once a week (mostly due to restaurants). The rest is caused by my inability to restrict fiber from fruits and vegetables, not to mention some random intolerances that i'm yet to identify. But for me, enjoying a variety of foods and having some freedom to eat out is more important than having perfect normans every day. Non-urgent D once or twice a day is worth it, especially since my life and stress level are crazy right now. I simply can't obsess over every ingredient that crosses my lips at the moment, so i pay a small, but tolerable price. Being GF/DF/SF is hard enough!!

[Gloria]

Harma,

I felt so bad when I read your post. I know exactly how you feel. It's very difficult to consider eliminating more foods when you already have such a limited diet, especially when you've been on the restricted diet for a long time.

I wish there were more answers. Do we become intolerant to food that was previously acceptable during the course of this condition? I wonder if the food always was a problem, and removing another food simply allowed our immune system to finally focus on it as the next intolerant food in line. For some of us, there seems to be no end to the number of foods we have to eliminate. I'm still examining my food list and eliminating after 4 years. And, like you, there isn't much left to eliminate.

I have found it helpful to have a set menu for each day. That way I'm not as tempted to eat a food that is suspect. I also try not to let myself be in a situation where I am hungry and don't have a safe food on hand. I always have a muffin or pudding I can eat if I'm between meals and get hungry.

But there are those times where the usual backup foods don't appeal. I'm getting suspicious of almond butter, but I love it. I've been trying to not eat it as a snack, but yesterday I wanted something salty and crunchy, and I succumbed to the desire. It's pretty sad when we have to feel guilty about eating a healthy, nutritious food, but that's the situation we're in.

You have an additional challenge being single. You need to be out with other people so that you can socialize. That can be difficult with this condition, because when you go out, you're away from your comfort zone. I don't know how well I would manage this disease if I were single, and I admire those here who are handling both well.

Gloria

[sarkin]

Harma,

I hope you will soon reign in this flare. I do think that just one thing can cause a flare, but for me it seems to be that once I am reacting, even foods that 'work' for me at other times are suspect. It is not surprising that you have had trouble finding all new food stores and name-brands with your move.

It sounds as though you are suspecting tinned foods and sweets the most - and if that's the case, your super-simple diet should bring you back. I think the more days of 'stability' you can build on, the easier it will be to reintroduce new foods. I think fruit juices are not good for me right now. I am drinking plain bubble water (seltzer or mineral water) with just a splash of lemon (or nothing) when I'm out and about.

I also find Gloria's planning to be an inspiration, though I have not gotten nearly as good at it.

Wishing you speedy recovery from this flaring time,

Sara

[tex]

It's pretty sad when we have to feel guilty about eating a healthy, nutritious food, but that's the situation we're in.

Ain't that the truth.


Harma,

You're certainly not the only one who is frustrated by the problem of craving certain forbidden foods, from time to time. I love to eat nuts, and they are a good source of magnesium for me, (when I eat nuts, I don't have to take a magnesium supplement), but I simply can't tolerate them - they give me D, (and remember, I don't even have a colon, anymore). So every once in a while, I'll cave in and try some nuts, to see if I'm able to tolerate them, and for a while, I will do OK, but before long, the D comes back, and I have to give them up, again. It's hard to win, because magnesium supplements can cause D, also, so I have to skip taking the pills on some days, to avoid D from an "overdose".

Anyway, the point is, I've been in remission for over 7 years now, and I'm doing OK, but as Gloria says, there are always those nagging temptations, and an occasional desire to try something that we loved in the past, to see if we might be able to tolerate it now.

Tex

[harma]

Thank you all for your replies. Zizzle I agree with you, when your life is complicated and stress full, GF, DF and SF already is a lot. The first weeks, I thought like you, this little inconvenience its fine with me, but than I ended up in a real flare. In my case it is not only the frequent toilet visits, I also don't feel very well than, not even tired but exhausted. You know the kind of fatigue of even thinking of doing something, is already too much. That quality of life is not good enough for me. So if I have a choice, my choice is strict(er) diet. But of course as we are different in our intolerances, choices for medication and medication, we are also different in our food choices.

Oh Gloria, while I was writing my story, I had to think of you and I remember your detective work and your endless lists here of what you can and can't eat. It helps to know I am not the only one. I also have some hesitation if it is only the food. I think than about Polly who had been in remission for years and even she, after rusty passed away, ended up in flair. It's a pity that we still understand so little about this disease. I agree, planning is an important tool. Thinking ahead when you leave the house, always bring lunch, a snack and diner if I don’t know exactly when I am back.

Sarah, the idea of adding some lemon to my water, maybe I will do that. But even lemon will be part of my new introducing foods the coming days.

Tex, it really helps from a real “veteran” like you, still sometimes struggles with it.

Looking back on my one and half year, I have had relapses before, but never that bad I ended up with D and a real flare. But the big difference between than and now is, I went back to my very strict food routine within days, now I waited for weeks. Well dealing with this lifelong disease and lifelong diet is probably of process of learning of making mistakes, falling and standing up again. But also, very important, being kind to ourselves and forgive ourselves the mistakes we make, learn from it, going back to basics and move on

[sarkin]

Harma,

This is great perspective. I totally agree - 'imperfect' BMs are OK, but crippling fatigue is a huge quality of life issue.

I think you're wise to figure out whether lemons are your friend gradually - I hope you find something to take the boredom out of water. I have always been a huge water drinker, but for people who enjoy other beverages, having so many choices "off limits" is taxing, especially in a warm climate. I do not care for sweet drinks, which is good because most sweet things are iffy at the moment... but that is a very common treat for many people.

I already said how much I adore my machine that carbonates water - easier than mineral water or bottled or seltzer, because you don't have to carry the bottles home (and bring back or recycle), plus it's just really cool. I hope you find some special treat like that for yourself - whether food or drink. Especially if you can find something to enjoy while out with friends that feels like a treat. I have had trouble with fruit juices (unless very dilute), and I think it's partly their natural sugars, but also so many added ingredients, sweeteners and preservatives.

I have been such a champion of the super-restricted diet, but today someone offered me some Russian 'kvass' - and I know she bought it because she has felt bad as we work together that I can't share a beer with the others after a hot day in the garden, or a pizza. I knew it would be sweet, and had yeast (which has been OK - and I planned on trying only a small quantity). But as soon as I tasted it, I knew I should have been more careful. It tasted like raisin beer! And the idea of 'beer' made me look at the label - of course it has malt, and though I don't know exactly what grain it's from... let's just say, it's probably a big no-no. I know I did not drink enough to ruin my week (and hope my day tomorrow is OK) - but even after this conversation that you raised, and my avowed stance of "no no no" to risky foods, I let my guard down. (I feel OK but had a small headache within half an hour, and tomorrow will bring the real answer.)

I agree with you - and I thank Tex for sharing his struggles (Tex, you know we think you have this totally mastered, right?). I have generally been more relieved to feel better than tempted by certain foods. But of course all of us have our moments when we've said no too many times to a dear friend, or have not eaten anything crispy or crunchy in weeks or - who knows what might derail us. Even though I am using a lot of nuts, I can't eat them in quantity. I am doing well with nut milk, and small amounts of nut butter, and a few soaked nuts that I eat while making the nut milk. But I can't eat them from a bowl (and I make fantastic toasted, spiced nuts in the oven!)... maybe some day and maybe not.

I also have to limit the GF English muffins my husband has found to no more than once or twice a week. They don't really mess me up, but I feel a little less well on those days - a moment of fleeting nausea, slightly more tired or less stamina.

Considering your move (and even the "good stress" of a wonderful change) - new home, new stores, new ingredients, new routines - well, it would have been a miracle if you didn't have to make some adjustments. I hope you get a real break from symptoms and can start rebuilding a full diet very soon.

All my best,

Sara

[tex]

Sara,

FYI, barley is the only grain that is used for "true" malting, because it is the only grain that can properly, (optimally), initiate the malting process. Whenever other grains are "malted", the malting process is started with barley, (by necessity). Therefore, no matter what grain a manufacturer claims to be malted, you can bet that the malting process was started with barley.

This is precisely the reason why Rice Dream has traces of gluten in it. For some reason, the manufacturer feels obligated to "malt" the rice, before making Rice Dream. I'm guessing that it's done to make the finished product sweeter, because when a cereal grain is malted, it generates enzymes that convert some/most of the starch back to sugar.

That conversion process is a unique feature of the cereal grains. When they are growing, the endosperm consists of sugar. As the grain dries down prior to harvest, enzymes are generated which convert the sugar into starch, so that it will be more stable in storage. If those kernels are subsequently planted, in the presence of an appropriate moisture and temperature level, the germ will be activated, (germination), and enzymes will be generated which will convert the starch back to sugar, so that it can be more easily utilized by the sprout.

Each type of grain has it's own unique version of enzymes that it produces for converting the starch back to sugar. Unfortunately for us, by some quirk of nature, the enzymes from barley generate the most appealing, (to human taste buds, anyway), sugar products in the malted grain, no matter what type the grain might be. Therefore, a small amount of barley is virtually always used to start the malting process, no matter what type of grain is being malted. That way, the proper enzymes, (from the barley), will be propagated throughout the grain, (rather than the enzymes that are native to the particular grain, itself.

Anyway, that's why you can be pretty sure that any product which is "malted", contains gluten, (thought the amount of gluten may be very low, in some cases).

Love,
Tex

[sarkin]

Thanks, Tex.

I actually had my "smart phone" with me and could have looked it up, but the second I tasted that (very interesting) drink, anything to do with 'smart' went right out of my head ;) I just knew right away that I should re-check the label (duh!). I was a little concerned about yeast, sugar and raisins - I haven't had a big yeast problem, but it could be that's because I hardly ever have any. And sweets are potentially problematic.

The label said 'malt' - and the phrase 'barley malt' floated into my mind, thankfully, though I had no idea that barley was unique in this way as a grain. So I stopped right away.

It was a 12-oz. bottle shared 3 ways, and I don't think I had even half my 4-oz-ish share. I'm OK today - whatever's going on with me could be explained by the cold I came down with a few days earlier, or by several days' hot work outdoors. PHEW.

This morning we went out to breakfast at a place we discovered last week - lots of raw and cooked GF/DF options. Everything is thoughtfully prepared and tasty - their coconut kefir is fabulous. Robert was disappointed that they only serve the GF pancakes on the weekend (for us this is most definitely still a weekend day!)... I guess that means we'll be going back. I've had their 'green drink' before, and find it easier to digest than a whole mess o'greens or salad (my fave).

Hope you're having a glorious holiday weekend - and thanks very much for this.

Love,
Sara

[harma]

I found one big NO, lemon juice. I tried it out yesterday added a little to my tea and within hours it started working. Of course I am not happy with it, but I am happy to have found something I seem to react to. Also I love that instant reaction, makes is so much easier to detect to evildoer. That gives me hope, that it may not be the mint.

Sarah, may I compliment you with your picture? You really so gracefully beautiful on it.

Was my social life during my first stay a bit of a problem (better ask what social life), now it seems to sort it out itself. Without any effort and they all come to my house, saturday paula, today hettie, tomorrow Anne. Last week I've spent a lot of time with Nicole who left to Kuwait. Before that I had over Fiona here for a week. During our monthly gathering of international organizations I met two new (potential) friends. It's amazing how easily things can change

[sarkin]

Harma,

SORRY about the lemon! But I totally agree, I appreciate those few 'instant' reactions, because then you know for sure. Easier than decoding the following day which was the evildoer (great way to say it). And thanks for your sweet words about the picture - the photographer is a neighbor, and his pictures of my dog are even better.

You know you're doing the right thing when friendships and good company are springing up around you. That will help you lighten the stress, and embrace the rewards, I am sure. Wonderful news, and here's hoping mint will still be your friend as your testing goes forward.

Love,
Sara

[MBombardier]

Sara, I posted a recipe in Dee's kitchen some time ago for beet kvass, if you are interested.

[sarkin]

I love the idea of beet kvass! Is your homemade whey dairy-based? I'm lately realizing how little I know about food, despite a pretty obsessive interest in this topic for years ;)

Thanks...

Love,
Sara

[Gloria]

Harma,

I'm glad you figured out it was the lemon juice. You might consider that all citrus fruit is off-limits for now. It's a mixed blessing to figure out a new intolerance. Happiness because another mystery is solved, sadness because another food is crossed off the list.

I hope this resolves your issues and you are back on track.

Gloria

[MBombardier]

Sara, I don't actually make the beet kvass. I should, but drinking kombucha regularly is about the extent of my food venturesomeness at this point. I discovered that there is actually such a thing as non-dairy whey. Who'd'a thunk?