Psoriatic Arthritis Journal - 2.5 year Update Page 63

[nicoles]

Two full size kale leaves, without the stem, and about 4 cups water, Leslie.

Is fruit bugging you when you eat it alone or also if you eat it with other foods? I used to not be able to eat it alone, but could eat it with other foods, is why I am wondering. Now I can eat it alone, too.

When fruit was problem for me, I made smoothies with greens, cucumber, romaine and a very small amount of berries, since they have less sugars.

[Lesliec1]

Oh interesting. I had suspected fruit in the past but never verified anything. I ate cooked fruit (pears and bluebs) by itself a couple days ago, which is Day 3 of elim diet, and had a bad night and next day.

So that's very good to know about how you eat it. In a while I will definitely try to do fruit in a smoothie again. I was doing that for a while in the past but I don't remember exactly how i felt at the time. I hope you're right ... how in the bleep can I never eat fruit again?

And let me ask you this: When you were first starting to get better over those many months, you had not figured out triggers yet, right? I am gathering that a person doesn't HAVE to do an elim diet, but it could just help with symptoms until you get better, which could take years. Is that right? I'm still trying to figure out the "have patience vs. actively fight" thing.

[nicoles]

I know, it's complicated, isn't it, Leslie?

Like for instance, was I just going through the normal ebbs and flows of slow healing and attributing flares erroneously to certain foods, when in reality they were gonna happen then no matter what? Or was it the food? And then the only way to know is to re-test that food in a few months, except if you don't react, was that the healing that took place in the meantime or was it never the food all along? Not an exact science, for sure.

So the short answer is: yes, I was getting better and I still had not figured out triggers. And once I started the real ED, I got much better, faster, but not entirely, and some real big flare-ups followed. Also, I started the ED after a 4 or 5 day water fast (can't remember now) so that might be why I felt much better, not the ED.

I have heard other MDs say that the improvements in AI disease usually happen as the person consistently takes in large amounts of varied micronutrients, while avoiding animal foods and working on healing the gut permeability, and that the need for an ED is not always necessary. That said, I wanted to come at this from all angles, and do and ED, but having too limited a diet for too long can actually be counter-productive, in terms of taking in enough micronutrients.

Mind spinning, I know. I guess I'd say that you need to be aggressive and patient simultaneously, which seems impossible but I guess means not giving up, staying vigilant, but also taking the long view - ie giving a new approach more than a few weeks to assess effectiveness, unless it is obviously glaringly negative.

Also -in terms of being reactive to sensitivity triggers, cooking fruit is great, but for me, cooking fruit used to concentrate it and make it too sweet for me, and trigger some pain, so raw fruit was better, and low-sugar fruits were best (berries, pomegranates and apples) Gotta love being an outlier, huh?

[working at it]

Have just found a resource for food allergy and intolerance that is helping me understand effects of food in a completely new way......The book is Dealing with Food Allergies, by Janice Joneja, and I am getting ready to test for food issues in a whole new way, after 5 years of trying to solve these complicated issue. Am suspecting that many of my issues have to do with the histamine content of foods, and the list for a "histamine-restricted diet" looks like it will deal with many of my known problems and some I did not suspect. Also, the "benzoate-restricted diet" looks like another to investigate. Had NO IDEA that such groupings existed, or might have relevance to my problems. It's a bit of an acedemic text, but if we have vexing and complicated problems, am expecting it to be helpful.

[nicoles]

Very interesting, Working At It - I have not heard of this book. Thanks!

I am very curious to know how the two restricted diets go for you.

[working at it]

Nicoles -
Am curious too......Am going to finish reading while I prepare for the "challenge" part of the diet; this may take 3-4 weeks. Will develop a sequence for testing. Just have a sense that this is going to solve many of the puzzles that have food difficult. Hope it's true!

Working at it

[nicoles]

Working at it - I hope it will solve your puzzles, too! I am always inspired by Star McDougaller Burgess, who went through such a scientific evaluation of his elimination diet.

Thoughts for this week

It has been nice to have a little more time and space with company gone, although I loved seeing my parents (for the most part, ) and I do wish they lived closer so I could see them more.

As far as life, we are getting in a bit of a groove here at Chez O'Shea, what with my husband using his anger at his boss to fuel some really amazing writing (his personal pursuit) and brainstorming better and better ways to get out of the job and into a better one. And as for me, I have been delving deeper into some creative ways to earn income, ala a few of my own small businesses, and am looking forward to launching them in 2013.


I spoke to my best friend this week, the one who has Ulcerative Colitis. Sadly, and she is back on prednisone, after another major flare up, and is seriously thinking about re-evaluating whether she wants to stay in her current job, which is stressful and physically taxing.

Talking about dietary change is off the table with her for now, but if she keeps having flare-ups I imagine she will be more open down the line. I will wait, and dare to hope, but give her the space she seems to need right now.

It was interesting though. Last time she had a flare I was not doing as well as I am now. And so it seemed to her that no matter which avenue you choose, drugs or diet, they are equal, or perhaps drugs are better.

But now the diet is starting to look more appealing, I think. She certainly was surprised to hear that I have been doing as well as I have for as long as I have. That, in combination with the fact that if she keeps flaring, they will want to put her on stronger, scarier and more expensive drugs than she is comfortable with. Last time, they wanted to put her on 6MP, which is a sulfa drug similar to Imuran, an immune suppressant. And she does not like prednisone, either. I can only hope that continuing to be a good example of health through diet might sway her eventually.

Happy Sunday all!

[fulenn]

Sorry to hear about your friend being back on Prednisone.

Glad Thanksgiving dinner went well, the menu sounds awesome!

Bummer about your husband's job still being negative, but kudos to him for channeling it into his writing. Hope you are feeling good now.

That is really interesting about the tooth. Would you keep us posted on how it continues to do with the new toothpaste?

Fulenn

[nicoles]

Hi Fulenn
I sure will let you know how that tooth/toothpaste treats me. So far, so good.

Thanks for the support! I am doing pretty well right now. Just have a little of the Monday Blues, because it is raining her in LA

[nicoles]

This week's peace of mind brought to me by this idea:

“When another person makes you suffer, it is because he suffers deeply within himself, and his suffering is spilling over. He does not need punishment; he needs help. That's the message he is sending.” ― Thich Nhat Hanh

[nicoles]

Had a fascinating conversation with an acquaintance locally who has fibromyalgia (which I did not know about prior to now.) She has changed her diet to treat it, not exactly like this but is vegetarian (no dairy; some eggs.) She said she takes malic magnesium and says it is a godsend for her.

Hm. Interesting. Glad she found something helpful. Looks like it is readily available as a supplement.

[Lesliec1]

I feel bad for your friend with UC. I can see why she isn't motivated to change her diet. When you have a flare-up it IS controlled by prednisone. So once you're over that episode, you can feel perfectly fine - at least I did. Therefore, there isn't as much incentive to change habits because you're not living with pain all the time. Unless you hate the idea of drugs. It's awful taking huge doses of that poison but it does work like a charm. Double-edged sword really.

Maybe she'll at least find triggers without changing diet. I think mine were aspirin and wine though I'll never know for sure. Maybe my UC just decided to turn into AR.

[nicoles]

Hey Leslie!

Yeah, I feel bad for her, too. The first two years she had it, she did not get much relief despite the drugs, because she refused prednisone. She knows the downside of this medication; her dad is a doctor. At the same time, her dad is a doctor, and so she doesn't believe in dietary treatment of U.C.!

She even went as far as to make fun (privately) of another friend who has U.C. that is controlled by diet, saying it is all in his head, and sort of acting like he is some sort of new-agey wuss. (The kind prone to lickin' crystals, no doubt )

The she went into a remission of many months, and I dare say she believed herself cured. She then had a terrible flare up and absolutely had to be on prednisone for 6 months. She hated it so much. I felt really bad for her then.

She does know some of her dietary triggers - seeds of all kinds, some grains - and she avoids them, yet she also knows about others - beer, coffee and dairy - but does not avoid them, because she likes them. She gets angry at the idea of "having to change" for this disease, and really, really wants to think of herself as totally normal. I can relate! Since changing her diet would be a concession to the fact that she is really sick, she resists it mightily.

She is a limit-tester, too; always has been. So it is hard for her not to get into a situation where she is exhausted because she has taken on many ambitious projects. That is another way I think she resists the U.C.

My hope is that with time, and with the observation of my own progress, she'll be more open to changing her diet. I know her DH is open to it! He asked me tons of questions about y diet last time we saw them in person. He is constantly worried about how she does not take care, and I know he has to pick up the slack when she flares so he has a vested interest in her health and it's effects on his own day-to-day life, too. He has to do things like remind her to not have a third coffee, or a pastry, Can't be fun for him.

I know my DH breathed a huge sigh of relief when I started taking better responsibility for my own health, in terms of pacing myself and resting. It is sometimes not fair to others to be in denial of your own illness.

But we will have to wait and see.

Nicole

[Lesliec1]

She gets angry at the idea of "having to change" for this disease, and really, really wants to think of herself as totally normal. I can relate!

I can too! Especially since you feel fine between flares. It's like dammit, I was normal a month ago and I will be again soon. You kind of feel like every time will be your last.

That's surprising that they could control some of her flares without prednisone. I didn't know that was even possible. I've been on other things for it but it was always something PLUS prednisone. Usually some maintenance BS drug that never worked anyway.

And, awful as it is, I understand the inability to quit drinking. I was young once and had a social life!

Oh, her Dad's a doctor. Ouch! My sister (the wheelchair one) was a nurse so you can't tell her nuthin!

[Lesliec1]

She even went as far as to make fun (privately) of another friend who has U.C. that is controlled by diet, saying it is all in his head, and sort of acting like he is some sort of new-agey wuss. (The kind prone to lickin' crystals, no doubt )

I will be interested to see how this plays out over time. I never was the type to see "seekers" as crazy or new-agey. Not that I'm a nice person (I'm not!) but I think maybe deep down I am a true cynic and never trust what the establishment tells us. Questioning authority was always natural to me. I don't think a lot of other people do that. My husband doesn't question authority although he's intelligent. I think he cares more about being likable.

But if anyone can influence her over time- it is definitely you! She's lucky though she may not know it.