I'm Off Sweets and I'm a New Woman!

[kayakchick]

Hey there loooooopies,
Some naturopathic students told me to go off sugar and coffee for a month,and I would be a new woman. I thought, "No chocolate? Why live? :rolleyes: But with God's help I have been off sweets (not all sugars - just sweets) for 37 days. On May 1, for other reasons, I had to go off my arthritis drugs (recommended by a gastroentologist).

I am very pleasantly surprised that I am a new woman, even though I really didn't think it would work, and didn't think I could do it either. Usually I'm on 1000 mg of Naproxen daily (after 15 years it's taken its toll and my stomach was not happy! :blink: ). Now I am on no arthritis medication. I had to stop it May 1, and was frantic. I have hardly any pain - it is so minimal, it is almost not worth mentioning.

And you're wondering if I stopped the coffee. Well, I'm a true Seattlelite (from Seattle, WA, USA) and that's next to impossible. :P I was going to do that next, but now don't see a need. I have cut it back, and was taking green tea regularly, but have been forgetting lately.

I'd love to hear if anyone else has found good results by omitting sweets.

Hugs and smiles and laughs, Cherrie

[raggedyann1]

Kayak,

I am glad that your pain levels have gone down for you. I deleted your duplicate post as it is too confusing to have 2 posts with the same information in both.

You said you had to go off all your arthritis medications May 1st. What medication were you taking in addition to Naproxen? Naproxen helps with pain but is not used in controlling any rheumatic disease? I just say this so others who read the post don't think that going off sugar is going to have any effect on their Lupus.

Some people are very sensitive to sugars and removing them from their diet will help with the aches and pains. At one time I stopped all processed sugars and caffeine. I thought for many years that helped my remission. I got sick again and I wasn't eating hardly any sugar or consuming any caffeine. So sometimes the spontaneous remission coincides with diet changes. Also if a good portion of your sweets were chocolate and you have a potential ulcer then you have helped your stomach a great deal by removing chocolate from your diet.

Anyone who can live without medications is wonderful. Sometimes a diet change will at least allow a person to reduce or elimanate some meds but not all.

One of my theories, it is just my theory, is that when we eliminate something like sugar from our diet we replace it with healthier foods like salads and fruits. So is it really the sugar or is it the healthier food that brings relief?

I went off all sweets for 3 weeks this past january. It was part of a fast I did as I could not do a complete fast at all. I really noticed hardly any difference at all. So I have gone back to eating sweets a few times a week. I have given up enough to this disease that giving up sweets is soemthing i dont have to give up now.

Take care,
Karen

[kayakchick]

Karen,
Thanks for your response. Naproxen is an anti-inflammatory and reduces inflammation, and is used frequently for arthritis. I tried fourteen different NSAIDS for over two years before I found one that would work for me without causing horrible side-effects. Surprisingly, I wasn't responding to any of the newer , so Naproxen allowed me to walk and I was thrilled.

The naturopathic physician that I talked to after I'd talked to the students told me that it would take three months before I saw any changes. It is interesting to note that as the westernized diet increased in refined sugar, the incidence of rheumatic diseases and diabetes have increased monumentally. Of course there may be confounding variables, but the naturopathic system believes that most of it is from the level of acidity in our systems. Sugar breeds parasites and creates a myriad of other problems, and is known to cause inflammation.

I sincerely doubt that this is a coincidental incidence, all other aspects of my life have been constant, and I've changed nothing else, and my stress level has stayed the same, etc. Also the weather has been extremely humid and damp, with many days of downpours. Normally I wouldn't be able to sleep much or walk without excruciating pain. I've had fifteen years of that and sometimes had chemo, steroid injections, etc. I also didn't think the elimination of sweets would make any difference, and to tell you the truth I didn't want it to either because I love sweets! I'll keep you posted to let you know if my pain increases, and if I have some pain after I eat sugar (because as I said before, I am not eliminating all sugars because that would set me up for failure. )

Cherrie :flowers:

[Clare.T]

It's great that you are feeling so well these days - you said your lupus was in remission a while back I think, and you thought therapy for childhood abuse had helped very much.

Cutting out refined sugar can't do anybody any harm at all !

It's rather like salt - amazing how much is in processed foods that you'd ever think would have it in.

I certainly 'feel ' worse if I have eaten stuff I know I shouldn't, "Bad girl !" and so virtuous if I have resisted temptation that I also feel physically better.

My current food ' thing' is these hydrogenated fats.

Was the chemo for lupus ? I am confused because also you asked what the benefits of Plaquenil are.

For other readers, NSAIDs are well known to risk serious effects on the stomach and GI as well as other potential undesirable side effects. They have no disease remitting or modifying properties like Plaquenil or drugs like Imuran
( azathioprine) or methotrexate.

However these potential side effects can be lessened by taking medicines that help reduce the risks and of course restricting use as much as possible.

Plaquenil and the anti malarials can so reduce disease activity that NSAIDs might not be needed except on occasion.

I think it's fair to say that these days it is unusual to be on nothing more than NSAID's for years

Of course lupus affects people so differently it's always important to understand what sort of lupus we are talking about & how serious it is - organ damage for example & what other conditions overlap.

It seems to me that we can only do our best within the various individual limitations.
Eat as healthy as we can, and get the best medical treatment available to us, avoid sun if that's a problem, be kind to ourselves, learn stress reducing techniques take exercise, there is a lot we can do for ourselves in fact and can take time, dedication and energy to fit it in.


It does worry me that a newcomer to lupus might think that any one simple dietary change or any other device, can be relied upon to deal with lupus or can replace informed medical supervision.

Lupus is a very sneaky disease and can jump up and bite you in the butt after lying quiet for years.

So much is pure luck and beyond our control.

Take care

Cheers :flowers:

Clare

[weedhopper]

Hi. Glad to hear your feeling better and doing good. :thumbs: I'm a bit confused, but that's not anything new. :wacko: So this may be a silly question, but how would the naturopathic physican explain those with controlled diabetes who later develop lupus? Since those with Diabetes(both types, 1 & 2) have to watch all sugars (including unrefined like those found in fruits, breads, milk and veggies.) and type 1 isn't caused by diet at all, but is an AI itself. I do agree that watching what we eat, and making the effort to live a healthier lifestyle is good for anybody. I cut out all refined sugars altogether, and have kept a close eye on my simple carbs for almost a month now. Not so much by choice, I must add. ;) But since the doctors couldn't find any other reason for my abnormally high glucosuria (Not diabetes, and my kidneys check out fine....thank goodness.) it was decided that I may have "pre-diabetes" since one of my 4 glucose tests was on the higher end of the norm range values. I do feel abit better on my new prescribed diet, in that my energy swings aren't as dramatic now that my blood sugars are kept even keel. But it hasn't done anything for my pain and other symptoms, which have been much worse with this current flare. This is of course, just my experience. And I hope you continue to do better.
:flowers:

[kayakchick]

Clare,

You're correct in that my lupus has been in remission. However, my arthritis from ankylosing spondylitis was throughout my body, which is why I was on the Naproxen. The Naproxen did help in that people with AS often become fused in their necks and spines. They would be hunched over, neck down, fused that way. They are be totally unable to move their necks. That's why it was called bamboo spine. They can't drive or even turn their necks if it gets that bad. Thankfully, the Naproxen prevented this and actually stopped the inflammation process, but only if I took huge doses. Mine was to the point that I had to go on a low dose of chemo. That's because I couldn't walk at all. I had to roll off the couch and crawl on my knees to use the restroom. That was due to arthritis in my feet, because AS can effect just about every joint, as well as the heart, eyes, etc. Im sure there was some overlap with the lupus as far as arthritis. So although I was in remission from lupus, I was still extremely fatigued and had severe joint pain with breathing, walking, and moving in general. I thought I would have to get both hips replaced eventually due to the attack on my hips, which happens with severe AS.

As I mentioned in my posting, one should never be without the proper medical advice. At this point, there is a massive body of research that proves beyond the shadow of a doubt that sugar greatly exacerbates inflammation. The most recent one I read about was from Harvard. And the naturopathic physician told me I would have to be without it for 90 days before I saw results. I am excited that this has worked for my arthritis, and thought I would post it in case anyone else wanted to try it. Since the body of research is so vast at this point, and from some reliable sources such as Harvard, I thought maybe other people would be interested in cutting out sweets from their diets. But it's tough to do, and I'm sure not everyone would want to try it. People used to tell me to eat this and not eat that, and I tried so many different diet regimens that it drove me nuts! But there was never a large body of research like there now is about any of those suggestions, at least not from reliable sources.

All I was trying to do was help others, and I never made any claims as far as other lupus involvement. I hope everyone will take the time to do research and to make sure all the medical advice they look at is from a reputable source, such as Harvard in this case.

[kayakchick]

Christie,
I'm sorry about your flare. As far as your question, I have no idea what a naturopathic physician would say about diabetes. Sorry to hear about your situation. Let me know if you feel any better after 30 days and 90 days. Take care of yourself! Cherrie :flowers:

[Clare.T]

Thanks for the clarification which isn't just for me but for everybody else including all those who lurk, on whose behalf I was asking.

Since this is a forum it is normal that questions are asked and it may unfortunately seem to be questioning the individual's improvement, which is absolutely not the case.

I hold no brief for sugars ! They are a complete waste of nutritional time and heaven knows how very much harm they do to us all, lupus or not.

As you certainly know we are surrounded by theories and sales people pushing snake oils and remedies of all sorts, quick fixes.
I am glad you acknowledge the complexity and variability of this disease and the very real dangers that can come of not getting orthodox medical advice and especially getting regular check ups whatever treatment options a person chooses.

Keep Well !

Clare

[Jacki]

Hi Kayakchick, Congratulations on eliminating sweets for 37 days - that's a hard thing to do! I have done so also from time to time but alas, I have gone back again each time. :o The last time I eliminated chocolate for almost two years. I have since begun eating it again (about a year ago) but no longer have the chocolate craving and find that an occasional piece is just fine without my lurching into an obsession.

I have also been on prescription Naprosyn for many, many years. I started in 1980 and it's been a fairly constant med for me over the years. I worked through an ulcer at one point over a decade ago but with the advent of good meds that help prevent ulcers while on NSAIDS, I've done pretty well.

I hope your arthritis stays away! In my case, I get a good month or so when I've come off the Naprosyn before the arthritic flares rear up again. I think that there's enough still in my system for a few weeks so that I feel pretty good but once that's depleted, my body gets angry again. :afraid: so in recent years I've given up trying to eliminate the Naprosyn.

[kiley]

Hi~ what great news; congratulations for the improvement! I know how hard it is to quit eating sugar, it's in almost everything these days.
I eliminated it from my diet and it helped me tremendously too. However, I still satisfy my need for a chocolate fix by mixing a few drops of stevia (you can also use sweet-n-low if you prefer but I don't think the naturopath will approve of that), a pinch of salt, cocoa powder and water in the blender. Then, I heat it and get delicious, low-calorie hot cocoa! My health food store sells a Swiss alkaline cocoa powder that may be easier on the tummy.
I cut wheat from my diet also and for me, that was extremely beneficial in reducing joint pain as well.

I stopped drinking coffee for 2 years and didn't find enough of a difference to warrant my trying to live without that. I'm with ya; though not in Seattle, I can't live without my coffee entirely. I just don't indulge on my bad days.


Continued success and my best to all, Kiley

[kayakchick]

Thanks for the replies! I love the idea about hot cocoa. Let me know if you have any other tips. Cherrie :)

[kiley]

Hi Cherrie~ I just noticed that his board provides a p.m. (private message) option and I sent you a brief note, so be sure and check your messages, ok?

Sorry, I don't assume you're as obtuse as I am (Ha ha). However, I, myself have never paid any attention to the "My Control" area of the screen so would've missed any messages people sent me!
Hope all is well with you, Kiley

[kayakchick]

I am quite disappointed, sad, and mildly angry at the response this topic has received from the moderators. It seems as though some people were concerned that omitting sugar from their diets would harm them, or the posting would send people away from their physicians.

It also is disappointing that the other entry I posted on the "medications" category was totally removed. This breaks my heart because if even one person who read on that posting category but not this category could have been helped, it would have been worth it. In that posting I clearly stated to be sure to check with one's physician before going off any meds.

Some people thought there were confounding variables, and that it is purely coincidental that my arthritis is so much better after fifteen straight years of taking megadoses of medication. I thoroughly understand confounding variables as well as the placebo effect. Since I am committed to honesty, I will keep you posted on my arthritis condition.

Incidentally, Naproxen is used for prevention purposes with some forms of arthritis. That is what my rheumatologist told me, who was a leading rheumy in the US before moving on to biotechnology. Naproxen had enabled me to stay unfused with ankylosing spondylitis, to walk, and to drive, which I am grateful for. One of the moderators posted the contrary. While Naproxen certainly has its down side, most drugs do. For example, the recent flooding of research correlating NSAIDs with strokes. My new rheumy said she had been trying to tell medical boards that for many years. She said the reason for the stroke connection is actually due to the raising of blood pressure, and therefore it is inevitable.

I understand that you are all trying to maintain the integrity of the site. That is very important. Most of us have tried many, many therapies of all types. Most of them haven't worked for me, but have worked for others. In that regard, I am happy for them. I hope that everyone reading this will take the time to research on inflammation and sugar. For those who are not internet savvy, just do a google search and type in both words. And of course, be sure that the sites you hit are from reputable sources, such as Harvard Medical School, which has recently published a strong connection between inflammation and sugar.

At this point a vast quantity of research has been published from reputable sources correlating refined sugar with inflammation, and pointing to causality. (I didn't say this is the only cause, so once again do your own research. My gut feeling is that sugar plays a starring role in the inflammation process.) Note, I did not say any other lupus symptoms, or the population which was studied. (However, I believe that inflammation can affect just about any part of the body, but that is only my own theory so do the research yourself, as always.) If Harvard, and many other leading institutions see such a strong connection, I sincerely doubt that what I am experiencing is coincidence.

Many people are not willing to take the challenge of omitting sweets for 90 days, as I was told, and that is each person's decision. When I was possibly looking at double hip replacements, I was willing to give it a whirl. Fortunately for me, it appears to have worked after about 22 days - but remember, that is for my body. I've done it before for a while, but did not permit myself any sugar at all, which didn't work for me. Now I am committed to eating a tiny bit of chocolate every so often because otherwise I will certainly fail. And how long can I do this? As a recovering chocoholic, I'm taking it one day at a time. I'm sure I'll mess up, but hopefully I'll be able to do it with God's help. :blink:

I was very grateful for this site until this posting on sugar. Now I am re-evaluating the whole site, which is sad because I greatly enjoyed it.

Another question I have is why there is a counting of how many postings people have. It seems to me that this would create an unhealthy competition because people would spend enormous amounts of time online, spending less time doing other things. It would also remind them constantly of their disease. For example, I bought a purple lupus band, but when I realized it constantly reminded me of my condition, I took it off because I want to keep a positive outlook. Of course I totally understand that many people are unable to do other things, but I just don't understand the competition.

Thanks for your consideration.
Cherrie

[weedhopper]

Hi. I'm wondering which study from Harvard your refering to. When I tried looking it up, all that I was able to find were studies on how chronic inflammation plays a role in hyperglycemia (high blood sugar.) and the onset of Type 2 diabetes. Namely where studies showed that subjects given asprin and/or a salicylic derivative were better able to process blood sugars.

[Ali04]

thanks for the info...
now if i could just follow a routine.....hmmm....

[zara]

Hi Cherrie,

I am surprised you are upset by the response. I read this topic and didn't see that anyone was trying to discredit you. Also, when you post in a public forum you have to expect that not everyone is going to completely agree. A more constructive response would be to not take it personally, but simply clarify your position or agree to disagree. :shake:

Incidentally, my mom has been trying to get me to cut out refined sugars for some time because she says doing that has improved her health and energy a lot. Personally, I think I have a fairly balance diet so tweaking it here or there will probably not cause me major improvements, but I guess you never know until you try...

Cutting out refined sugars is not a bad idea by any means. I think the moderators are just wanting to caution everyone that it may not make them a new person, so to speak.

Also, I don't mind that the boards show the total posts of everyone. I guess that is about perception though. I don't see it as a competition, but rather as a way to look out for mentors regarding this forum. Maybe a solution would be to allow members to hide that information if they choose. That way you and others who are bothered by it will not display.

Anyway, I'm not trying to be argumentative--just offering another POV. Hope this helps. And please do keep us posted on how you're doing.

Good luck and take care, :luck:
Zara

[Clare.T]

Kayakchick

Your post has been left up in the interests of transparency. We do not wish other members to get drawn into any argument so, good people, please don't !

We will simply delete the whole thread if that happens.

If you Kayakchick (or anybody else) have problems with forum policy or the moderators you need to contact the site owner and founder Joanne.

Same with constructive suggestions

The board is for lupus, repeat lupus, emotional support and exchange of information and is not the proper place for discussion of forum policies.

Each forum has its culture. Anybody who isn't happy here is more than welcome to go elsewhere.

If it wasn't for dedicated, effective moderation this forum would not be the place of excellence it has become over 9 years going from strength to strength.

Several of the moderators are extremely ill right now- some are so ill they are unable to post at all. Others pay for their participation by increased pain.

We write from personal experience and long suffering as well as a vast amount of information from our researches, personal knowledge and after reading countless posts from thousands of posters.

We don't know everything and aren't always right.

But we will not allow the suffering that can be experienced with this disease and other connective tissue diseases to be trivialised by anybody.

Frankly, your comments in the final paragraph are insulting in the extreme, not only to us moderators doing our job as best we can according to our remit, but to *all* participants.

Your remarks are highly " inflammatory" and not acceptable here.

This is a copy of a pinned post from Joanne, asterisks are mine.



It's been brought to my attention that certain members have been breaking board rules, and abusing member priveleges.

This will not be tolerated.

These boards have always been a friendly place to meet other lupus sufferers, to share advice and offer support. I fully intend them to stay that way.

***All posts are moderated and any found to be in breach of board rules will be removed. Members who continually break the rules will be banned.****

A reminder-
No advertising
No soliciting of other sites or products
**** No abusing or flaming other members****
No arguing

Also included in the above list is members posting repeatedly in order to increase their post count. This is not allowed and members who persist in doing so will be asked to leave.

**** Any action a moderator decides is necessary to take is final and shall not be put into question. Anyone found to be abusive to any of the moderators, either on the boards, by PM or email, will be banned from the boards. *****

Please work with us to help keep these boards the special place we have all worked hard for them to become.

Thank you
Joanne
Site owner

Wishing you Well

Clare

Moderator

[kayakchick]

Dearest Lupies,

I am so very sorry that I seem to have unknowingly offended by my posting. If any of you had the opportunity to talk to my family or friends, you would learn that I am a very compassionate person, sometimes to a fault. I would never ever in my wildest dreams mean to offend anyone, and I mean that from the deepest part of my soul. I am writing this with tears.

I deeply regret that I ever posted this topic. I totally understand that many people are seriously ill, and believe me, I understand that I could get very ill at any given moment. I cannot express enough my deepest regrets for posting, and am still crying, and hope I can get it together to go to work. Even so, you may think I'm not the sharpest tool in the shed, but I honestly don't understand the inflammatory aspect of the last paragraph in my previous posting. Part of me wants to know, but part of me doesn't care to have it posted. If I have a choice, I would prefer a private email. It breaks my heart that I have offended people, and I am baffled by the realization that it happened and that I may get kicked out or ex-communicated or something! :wacko: I don't know what else I can do...

This site is a wonderful site, and a great gift to many people. I have met some awesome people in the chat room, and have done my best to offer my support. Last night it was hard to get to sleep after chatting with a very ill young woman in the chat room. It broke my heart.

Honestly, I don't know what else I can say. Clare, I am eternally sorry for this great misunderstanding. Please forgive me for my unknowing insensitivity. All I was trying to do was help. If my posting was that severe, I guess your only option will be to remove me. Even so, I greatly appreciate the hard work of all of you who put in your valuable time and efforts. I enjoyed it while it lasted, and wish the best to all of you. If any of you wish to email me I would love to hear from you. My email is kayakchick@msn.com

Thanks again for the great site. And a great big hug to all who manage the site, with my sincerest apologies. Good luck to all of you...

Cherrie

[Clare.T]

Kayakchick

We can accept that you don't understand how your comments could convey unintentional meaning and cause offence.

We understand that you were sharing your own joy at feeling so much better and wanted people to know why that would be. There was no intention of invalidating that and nobody is doubting the harm sugar can cause.

We were expressing our valid concerns: some puzzlement at aspects of your posts that were not at all clear to us and some misgivings about the simplistic approach that appeared to be represented.

The content of posts is probably the most difficult aspect of our role as moderators but we are entitled to post as individuals. That's just how it is.

I will mail you at some point today.

About banning: Nobody is banned without warning, usually a couple of times or suspension beforehand. Banning is an Administrative decision.


Take it easy.

Clare