Anybody have a lupus remission story?

[PaleoPlease]

Just curious to read about how the Whole 30 has improved your condition. I'm starting tomorrow.

Thanks

[acrawford88]

I am also curious about this.  I am on day 22 of my first W30.  I would like to continue for a couple more months, and then I plan on going in to get my labs done.  I will let you know how they turn out!

[Lizitea]

I was just reading that Lupus is caused by inflammation and this diet is anti-inflammatory. 

 

So it should be helpful. 

[PaleoPlease]

Do you have lupus as well Acrawford88? Yes, lupus is all about inflammation. I have read about amazing lupus remissions on the paleo diet.

[acrawford88]

Yes I do.  I was diagnosed 15 years ago (I am 33).  I have been on Plaquanil since then and I would love to get off it.  I have never felt sick, but I go in for check-ups once per year, and labs continue to confirm that I have it.  I am hopeful for a remission because the disease has been rather mild for me.  Could you pass along any remission stories you have found?

[Anewknitter]

Hi.. I just have discoid lupus (not systemic), but it too has brought me to Whole30 to try and see if eliminating the major foods will help.  I am not doing the auto-immune diet though, because with no beans and such, I don't know how I could give up eggs & tomatoes too.  I will check back here to see what you all discover.  

[acrawford88]

Hi all, I wanted to update you on my labs.  Just to give you some background...the last time I had labs done in Dec '12, everything was normal, except I had an ANA titer of 1:40.  This was the lowest it has ever been.  I don't know what to attribute that to....  in the past it has been as high as 1: 640, but the last few years it has stayed at 1:160.  My results from last week came back, and everything is normal except for the 1:40 titer.  So basically nothing has changed since last year.  I was hoping for a negative ANA titer, but I am happy that it has not gone up and everything was normal.  Had it been negative, I would have considered going off the Plaquanil, but I am nervous to do that now because I am doing so well and I do not want to cause a flare.  If anyone has any experience with going off Plaquanil I would like to hear about it. Thanks!

[Vincentparty0f4]

I am interested in this too.  I was recently diagnosed with lupus and my amazing doctor recommended we try The Whole 30 prior to beginning meds (because he knows I HATE meds).  I can't wait to see what happens.  I am in so much pain I am miserable.  Any advice is WELCOME!!!

[Kelly M]

I have a host of autoimmune conditions - which is why I am here - and I am physician trying to practice what she preaches. 

 

I strongly believe autoimmune disease starts in the gut of those with a predisposition for the conditions.  I, too, have issues with getting rid of eggs and the nightshade plants because the food choices would be very tough for me.  My theory is that the biggest inflammation-causing culprit is the auto-immune reaction itself.  I don't believe the nightshade plants cause inflammation but they make whatever inflammation you have worse, as does Omega 6.  If you are in significant pain, sure, get rid of it all for a while.  I think I'll start working on eliminating the cause then get rid of other possible offenders if I still have pain.  

 

Regarding assessing your disease status, the ANA titers fluctuate tremendously and may not be an accurate reflection of the disease process - it may not tell you about the damage being done.  Mine has ranged from zero to 1:640.  Try to see if your sedimentation rate or your CRP (non-cardiac) reflect how you feel.  See if those levels go down with Whole30.  Let me know what you find.

 

I wish you all wellness.

[acrawford88]

Kelly, thanks for your advice.  I went back and looked at test results from the past 5 years.  1 year ago (prior to W30) my sedimentation rate was elevated to 41, however I was pregnant at the time and my dr. said that could have something to do with it.   Do you know about this??  It was elevated one other time a few years ago, but only to 25.  Other than that sed rates and c-reactive protein has been normal.  I have always felt great.... only time will tell if W30 is making a difference in the long run.  And from now on I will pay closer attention to my sed rates and CRP.  Thanks- any other thoughts are welcome. 

[Kelly M]

acrawford88, inflammation generally goes down in pregnancy, at least the pain related to it does.  Women with RA, for example, love being pregnant (in general) because their pain is usually much better.  I would doubt the elevated sed rate you demonstrated was soley gestational.  

 

I would love to hear more feedback about all y'all's labs and symptoms as we progress.

[lindsaymick]

I have systemic lupus with chronic inflammation and achy joints. My energy level after work was almost non-existent. Today is day 14. I haven't been swollen and sore since day 4 and my energy level has significantly increased. I don't need a nap every day and running errands after work no longer feels like a death sentence. More will be revealed, I guess! I'll keep ya posted

[praxisproject]

Keep us posted on your progress Lindsay Yay for Day 14!

[AmyShubi]

I have systemic lupus, but I caught it early (had a discoid rash for 3 years on arms, back mostly) and it never progressed to much joint pain.  I am on plaquenil (200 mg twice a day).

 

I went paleo July 2013

 

Here are some medical results (I might post more later):

 

Sedimentation Rate (standard range: 0-20 mm)

8-2013: 34

1-2014: 7

 

C-Reactive Protein (standard range:0.0-0.6 mg/dl)

8-2013: 1.4

1-2014: 0.1

 

Nuclear Antibody Titer

8-2014:  >=1:2560 (Speckled)

No testing for 1-2014

 

I'd like to talk to my doctor to going to 1 pill of plaquenil a day.  I am planning to become pregnant within the next few months and I don't want to be taking so much (if any) medication.  But all of my doctors have seemed to be more comfortable with me not making any changes at all to my dose.  

[bubyelupus]

I have systemic lupus and was hoping to hear some remission stories as well. I am on day 26 of my first whole 30 and have not seen any improvement at this time. I am planning on continuing for as long as I can as it has been fairly easy for me and I just feel healthier eating this way. I am hoping to see some improvements and think I may not because of a few factors: I am on low dose (5mg) prednisone daily for my joint pain, I have a toddler and an 11 month old that like to take turns keeping mommy awake each night, it has been really rainy here in minnesota, and I stess a lot about money. I try to keep my stress down and sleep as much as I can, but I think they are factoring in a bit to my joint pain-I will work on those:) I am really trying to avoid the AIP because I am not sure how I could live without eggs...I do limit my nightshades because they definitely make my pain worse. Anyhow, guess I was just needing to get some of that out, and hoping to hear some success stories:)

[acrawford88]

Bubyelupus--  I am in MN too   And I also am dealing with lack of sleep due to 2 little ones.  That can be really frustrating when you have worked so hard without results!  Have you noticed ANY changes since you started (not just with the lupus)?  I did my first W30 in August and I remember waking up one morning somewhere in my 3rd week, feeling rested.  And I have never woken up feeling rested (not even when I've gotten 10 hrs of sleep)!   Don't give up just yet.... keep trying to notice little things that might be different with how you feel.  And even if you aren't noticing anything, just know that there are good things happening in your body.  It may take more than 30 days to notice them.  For me, my labs didn't change and I didn't notice a lot of differences with how I feel, but I have lost 20 lbs since August, so I know I am healthier, and having that extra weight off feels great, so that is reason enough for me to keep going.  Also- if you are not getting enough sleep I think that can really throw off the results.  I am speaking from experience... I'm still getting up with my 14 month old several times a night....ugh. 

[artist37]

Hi everyone I am starting the whole thirty diet tonight. I have lupus sle, discoid, raynauds, kidney disease, vertigo, highblood pressure, gut issues, raynauds , RA, fibro, and a long list of food allergies. I am going to need so much encouragement not to cheat and to stick with it. I need this because I am going to need to be at my best for my niece that I am going to be raising. Any help or tricks to do this right would be appreciated. 

[MrsStick]

Post things all over your house with why you won't stray from the path of the W30. Pictures of your neice. Encouraging sayings. Whatever it takes.

 

Get rid of your secret stash of goodies. All of them. If you think you'll have problems with willpower, get rid of them now when you don't want them. It's harder to resist when your body and brain try to trick you that it's worth it.

[praxisproject]

How is everyone doing?

[Callie]

I'm just wondering how everyone is doing. No one has posted here in quite a while.

I have lupus, RA, PsA, fibro, and a few other AIDs. I'm a few weeks in, and my fatigue is down considerably, as is my joint pain. I'm hoping my next labs are superstar, but I have to say my rheumy doesn't seem very supportive of this. Has anyone else experienced this?

[Tanya K]

I don't have lupus, but do suffer from ME which is joints paints, exhaustion, muscle pains, brain stupidity!! Lol! I am not even telling my doctor about what I am doing! For one I know he wouldn't agree. He's all for the meds and 'waiting for the condition to burn out'! It's been 8 years! I have noticed absolutely amazing results, like I am no way in any shape or form like I was 4 months ago! (Accept for today, made a mess of my reintro!!). From what I have read here about doctors etc they generally live in their own world of the 'food plate /pyramid' template! Some, are very encouraging and I would say there are plenty of doctors out there that are all for this type of lifestyle. It is a matter of finding them! Best of luck.

[Kim_Dahlbo]

My mother, sister, two nieces and every aunt on my maternal side suffers from various auto immune disease.  My Sister and Mother have the worst of AID, with full blown (out of control) SLE.  I was an in-betweener, every other test was positive, then negative then positive.  One thing I knew for sure, I felt terrible when I was under stress. I changed jobs - less stress, felt better but still not quite right.  After a couple Whole30's; I can absolutely tell you that Whole Healthy Eating has saved me.  After my first 30, I went 'off roading' for three days, basically back to how I ate before the whole30 (which btw, I didn't think was 'that bad').  I essentially leveled myself for almost a week after.  I felt terrible, tired, stomach ache, back ache, fever, chills, bloated, achy, I seriously thought I had the flu....  I thought going into this, it would be something to try, but I wasn't sure I had faith that it was going to work, plus I was scared out of my mind how to survive whole30/paleo moving forward. Now, I don't know how I would live without a whole30 lifestyle.  If you have Lupus, ME, CF, or any other Autoimmune...  You absolutely must try the whole30.  It's not hard (it's not as easy as your life is today) - but trust me it's not hard.  Good Luck!