As some of you know I made a change several months back. This change included avoiding gluten, added sugars and processed foods ( especially preservatives ).
I can't say enough good things about the positive results. As I told a friend, Enbrel helped me a lot...about 80% but the food changes filled in the rest and got me close to 100%. The fatigue is still there sometimes. If i cheat and eat something i'm not supposed to I will still get some pain and once I stay away from those foods again I get back to no pain...no redness, no aching in my hands, no swelling and very, very little stiffness. Stiffness will come if I lift or carry something that is too strenuous on my hands.
My regular rheumy even noticed the difference during my follow up appointment and when I told him of the changes I had made to get these results he was writing it down. A breakthrough that they are finally going to start paying attention to what ever you expose you body to and what you put in your body does make a difference.
There's no guarantee this will work for everyone. I do know from what I've read it works for a lot of people. The fact is it's worth a try....but as far as gluten goes it's in soooo many products. Research is necessary to understand where gluten can be found and how to avoid it. Also to supplement some foods I have to avoid with others. It took time to adjust but was totally worth it.
In addition....My mind is less hazy, my memory is almost back to normal. My energy level is higher than it's been since my diagnoses of PsA, most of my P is gone.
The results keep me motivated to keep going. :)
My hope and wish is that all can find whatever method works, or changes in life that will help everyone find their method of reducing pain with minimal medication.
Wow, Dini, that is fantastic, and a perfect example of complementary therapy. Enbrel is doing its work protecting your joints, and diet is keeping the residual symptoms under control. It sounds like it is worth the effort! And you look fantastic. Here’s hoping that you have a good long run with both parts of your winning strategy!
Dini, I'm delighted going gluten free has worked so well for you.
Another member said to me recently that in addition to her biologic being a game changer she gets maybe 10% improvement here (diet and fish oils) and another 10% there (exercise) and suddenly she realised all these add up to one BIG improvement.
Tell us, do you find exercise helps as well? I get good results from hydrotherapy but can't do much else at the moment.
And the thing about a bit of help here and a bit of help there is that when you are feeling a bit better, it enables you to do a bit of something else that will make you feel a bit better. Every little bit helps, and then the improvements compound. I often say that Enbrel has enabled me to do other things that have done me good. Like exercise, cook more and better, sleep better, do some interesting things because I’m not dead tired 24/7.
I have to say one other thing that makes a big difference is cutting out foods with added sugar. The reason I say this is because when I do "cheat" and have sugar in any form, juice etc....I will have pain the following few days. Then it will go away again. I've tracked it several times....and the result is consistent.
In addition I've gone from needing 2 hour naps on weekends to have a 20 min cat nap. Big difference.
Have to comment here! My sister who has psa saw her rheumatology nurse who recommended the abascal diet - they have just done a big study and saw remarkable results especially with patients of Irish or Scottish descent. I have been doing it for 5 days now and already the results are great - I can stay awake I can walk etc. from what I’ve heard the biggest thing is cutting out gluten but the diet calls for no gluten, sugar, red meat, dairy for 3 weeks. You can read about it online! I’m not being paid etc etc but so far so good!!
Hi Dini I have started hydro therapy which is great while I'm doing it but the pain and exhaustion lasts for days afterwards - how often do you go?
Jules G said:
Dini, I'm delighted going gluten free has worked so well for you.
Another member said to me recently that in addition to her biologic being a game changer she gets maybe 10% improvement here (diet and fish oils) and another 10% there (exercise) and suddenly she realised all these add up to one BIG improvement.
Tell us, do you find exercise helps as well? I get good results from hydrotherapy but can't do much else at the moment.
I'm in a frustrating position at the moment. I have been on Humira for about six months now but only came off Prednisilone three months ago. The result is that my pain and inflammation are worse. But I do feel a little less fatigued. For the past month I have been on a wheat free (nearly gluten free) , added sugar free diet. I was already on a cow dairy free diet, I have goat and sheep dairy a couple of times a week. I've recently started CBT for pain relief and hydrotherapy as exercise. Even the hydrotherapy leaves me exhausted and in more pain for a couple of days. Walking the dog is exhausting too! Having just listened to the pod cast on Exercise and Health I'm going to ask my son-in-law's personal trainer if he can help me. Perhaps having both PsA and PMR together complicates things!
In the mean time I enjoy my time making doll characters to illustrate the children's book I wrote and writing a healthy eating blog. If you have time do take a peek at them at www.grannygnome.com
I guess I am confused. My doctors told me unless you have a gluten allergy or a diagnosed chron's disease, which I have been tested for both, that going Gluten Free will be hard on your stomach more. They suggest just taking away all flour and sugars. I don't know about the dairy.
Yep confused .com! Surely if you take out all flours you are gluten free. I've been off cow dairy for over twenty years as I am allergic to the protein and the lactose. I think we all just have to soldier on and hope to find what suits us as an individual.
Rebel mom said:
I guess I am confused. My doctors told me unless you have a gluten allergy or a diagnosed chron's disease, which I have been tested for both, that going Gluten Free will be hard on your stomach more. They suggest just taking away all flour and sugars. I don't know about the dairy.
I too have embarked on an anti inflammatory diet. I have always cooked from scratch and avoided additives and preservatives and been dairy free (doctor's advice) for over twenty years. Five a day or more is a must. We also eat organic where possible.
Now I have added to that a mostly gluten free diet but definitely wheat free plus cutting out refined sugars. And I only have fish now.
I'm also taking Omega 3 fish oils and Curcumin with black pepper.
It will be interesting to see how it goes as I am now off all meds including Prenisilone until I see my consultant in 4 weeks time.
Again, I NEED the will power. I will purposely eat less healthy food to allow for eating dessert! Yesterday it was a snickers ice cream bar and half bag of Doritos!!! I crave junk food and have always eaten more junk than is good for me, but lately I’ve tried to cut back because of my clogged arteries. What I’m concerned about now is I’ve been having some achiness/weakness in my legs, and I’m concerned it’s a SE of the cholesterol med (Crestor) I started taking 3 weeks ago. I’m also taking a blood thinner (Plavix), but IDK if that can cause achy muscles. I don’t think it’s the ice cream. I’m pretty sure Enbrel is taking care of my PSA pain. Although my heart meds aren’t complimentary therapies, I’m asking if anyone has had experience with these meds and SE of achiness. I had weird pain a few years back from Lipitor (a statin to reduce cholesterol) and my doctor told me to stop taking it. Everybody here knows we’re trying to eliminate pain, so taking any pills that cause more pain isn’t on our agenda!
Hi Dini… I would have never thought myself that gluten free would have helped until I saw it myself… In 2010 I was going downhill fast and couldn’t walk. Pain everywhere. Doctor said I needed meds asap. I have other health issues and wouldn’t take them. My sister has celiac and said my symptoms were from that also. I had no choice but to try. What some patients don’t understand is that it takes awhile to start noticing a difference. I only stuck with it because I thought I had celiac. Well, 6 months went by and the pain was gone. That was 7 years ago. My joints are still very tender, and I have a really bad finger and starting to get worse in my hip. I have to go on something soon I know, but it’s amazing how much it helps… One time I eat it, and I’m swollen and in pain… You have to stick with it to get results. I would have never known if it didn’t happen the way it happened to me…
I understand that you felt better going gluten free; you probably cleaned up your diet a lot when you did that. But what I’m also hearing you say is that you still had joint pain and inflammation? The thing is, that once damage is done, it can’t be undone. After this many years of feeling better but not slowing the progress of the disease, you may have damage that will continue to be problematic even after you go on meds. I hope that the damage is limited.
Seconding what Stoney said. Also, there’s symptom control and then there’s disease control. Who wouldn’t want symptom control in the here and now? But it’s not the same as controlling the disease and preventing long term damage and potential disability.
It seems utterly counter-intuitive to say the disease may still be doing its dastardly work even when pain is much reduced, but as I understand it that absolutely can happen.