Kickas.org Forums Treatments, Drugs and Alternatives NSD and diet-related; Time to Try Something New

Hi, folks! I'm new to this community, but I recognize some folks from the SAA site. I have psoriatic spondylitis. It hit me very hard and fast three years ago. Despite using the best medicines available, I ended up on disability this year.

Right now, I'm off most meds (they stopped working), except those for pain. My doc wants me to start Cellcept, but I said I wanted to wait a few weeks and give my body a break from the strong meds. I felt this was the best time to see if changing my diet will help at all. I'm a bit ambivalent about it, though. But I'm willing to give it a serious try in order to avoid taking more immune-suppressant medications.

Two weeks ago, I started the Paleo diet autoimmune protocol. No grain, legumes, dairy, eggs, nuts, sugar, or nightshade family plants. I've been very strict about it. My main sources of carbs have been vegetables (mostly low-carb types, but an occasional small serving of sweet potato or winter squash) and fruits (all types - around 4-5 servings a day). Fats have been coconut oil and avocado oil (I hate olive oil). Lean grass fed meats and wild fishes for protein. I'm allergic to eggs and pineapple.

So far, it seems to be the equivalent of the LSD, I think. But, frankly, I haven't noticed any difference in my body yet. Still have little energy and nap a lot. Struggle to run any errands or work in my garden. Pain levels are the same. The only good news is that my blood sugar levels have dropped around 15-20 points.

I really don't believe I can continue this for 6 months if I don't see any signs of improvement. I'm really impressed for those of you that have! I'm wondering if I shouldn't try the NSD or a 1-2 week juice fast at this point. Until I can get my inflammation under much better control, I can't test different foods to see which ones might affect me the most.

Part of my attitude right now is just grumpiness from not eating lots of sugar and starch. Bleh! Some people experience a wonderful surge of energy at this point in the diet, but I still feel like a slug! A slug that's still limping around in pain.

Any suggestions?

Getting off of immune suppressants means your immune system is going to kick in, which might not be fun, to say the least. There are some things that can help relieve the syptoms that go along with that. Bromelain and other proteolytic enzymes are probably the most effective symptom relievers that I've found. Quercitin can help, too. There's a new person here, bhoc (I think that's his user name) has a list of natural herbs that he's using with good results. Yeah, switching to "healthy diets" is different for us than the regular folks.
Might I say it's not fair.
Hang in there, though, there's hope.

Actually, I don't feel much different going off the immune-suppressant meds, because they stopped working for me months ago. Even while on them, I had lots of flares, fatigue, and chronic pain.

I'm not sure if I should try bromelain. That's one of the main compounds in pineapple. Pineapple gives me severe diarrhea, even in very small doses. Bummer! I love pineapple.

Has anyone used bone broth to help heal the gut? I made up an awesome batch of it from chicken feet, but I haven't drunk it much yet.

I actually can't handle pineapple, either. Bromelain is okay for me, though.

That must be tough that your meds stopped working. I'm sorry to hear that.

Hi Sundace,

I love your idea of doing a 1 - 2 week juice fast. It was the best thing I have done for my body! I feel like I totally reset my immune systems after 2 weeks of drinking [home juiced] green juices. My inflammation went completely down during that time, and I feel like I know my body so much better now. I can totally tell which foods no longer agree with me and set off the immune alarms & inflammation.

I did not do my green juice fast until around 5 months into this no starch diet, but it really turned things around for me once I did it. I would totally encourage you to try it now and get your healing started more quickly. I have yet to meet anyone who did a serious pure home juiced "green" juice fast that did not see amazing life changing things happen to their body. This also goes well into other spectrums of healing the body for those who may not have AS, but who had other health problems. I am surrounded by people who recently caught the "juicing bug" like friends at work, to family memebers, etc, and so far everyone has had amazing results and become inspired to include fresh green juices into the diets going forward.

Check out Fat, Sick and Nearly Dead (a MUST see for inspirtion if you are going to be juicing)

Dave Conrardy, The Raw Food Trucker (more life changing inspriation)

The 10 day juice & smoothie fast by a fellow friend with AS

A blog I wrote about my my two weeks on the juice.

Now, anytime I feel the burning pain try to return to my back, I revert to juicing dinner or breakfast, or a quick 24 hour juice fast. My favorite combo is green apple, ginger, celery, wheatgrass , lemon, parsley.

-Andrea

for me, i think it was very important to stop dairy. turns out i was "allergic" to casein.

i see you are off dairy, but that's not the point i wanted to make. rather, maybe go to a naturpath, have bloodwork done to see if there is some food you are "allergic" / "sensitive" to that is causing your body's inflammation.

dairy may have been causing my joints to flare. they still do so that's not it alone. but it was definitely causing my GI tract to flare. my gastritis is so much better.

maybe you're still eating something your body is unhappy with. Allergy testing / food sensitivity testing might uncover it.

i do eat legumes and nuts, and nightshades, otherwise our diets are similar. I find the more variety of veggies i eat, the happier i am.

i think one thing that has improved my health is all the supplements listed under my name. while a few of my doctors think i am wasting my money on them, the doctors that are helping me most are the ones to have prescribed them, and i do see an improvement.

and the LDN has been a big help. i still become inflamed, but it does allow my body to heal up that inflammation faster. and i haven't torn a tendon or ligament yet while on it. before that i was tearing things left and right (and in the middle too )

Andrea, I've actually already read/watched nearly everything you recommended about juicing. That's why I'm considering it. It may be the fastest way to reduce my inflammation so I can start getting a handle on what may be aggravating it. I'm trying to pull together enough money to do it, since I have to live on a limited disability income and my health insurance and medical bills are sky high.

Do you have any recommendation for which type of juicer to use? My local farmers market is very expensive (it's in a university town). I think I'm going to try asking the vendors at closing time if they would be willing to sell their remaining produce at a volume discount (since juicing uses lots of material). I have an intensive vegetable garden, but I'm limited in how much I can work in it because of my disability.

Sue, thanks for your suggestions. My therapist knows of a naturopath I can contact. I'll have to see if I can work it out financially. I have already found out I can't take much fish oil. A couple years ago I had taken 1 tsp/day of Nordic Naturals brand, and within 3 weeks, I developed massive daily nosebleeds - a steady stream that lasted 30-60 minutes. It only stopped after I quit the fish oil.

I just tried taking fish oil capsules this week (only 1 a day), and this time I developed an allergic reaction to it (asthmatic-type). I contacted the manufacturer. They said it had no soy or other common allergens, except for some possible shellfish contaminates. Right now I don't know what I'm reacting to.

I've heard that testing for food allergens is not very accurate. But I sure would like some way to help me figure out what is going on. I'll have to read up more about LDN.

Thanks, folks!

janet noticed the same thing (nose bleed) when she tried a different anti-inflammatory product. i wonder how common it is. i guess some people are probably more prone to it. wonder if there's something similar that wouldn't do that to you?

vitamin C is also supposed to help. i think it helps me. Donette turned me on to it. my rheumy suggested i start taking it.

someone posted a good article on here about how those blood tests were "meaningless" in regards to food sensitivities. but, i found it interesting that the one thing that was my red flag was the dairy. and i already knew that that alone bothered my gastritis more than anything else. so i take the results with a grain of salt. no harm in getting the tests, then avoiding the foods that are red flags and seeing if it makes a difference. i really don't know after reading that article that was posted what to believe in regards to the testing? as it seemed to pan out for me.

Sundance,

You should be able to find a gently used juicer on Craigslist.org. I would take that route to get you going. I just checked our local portland.craigslist.org and there are 83 used juicers on there right now

I find apples to give the most juice per ounce, vs carrots (it takes a lot of carrots) but then again a HUGE bag of organic carrots at our Costco is only $5. You can also get large bags of lemons, limes, etc at Costco.

Good call on the farmers market at the end of the day. We live in the country, right in the middle of the fertile Willamette Valley in Oregon, so in that regards we are lucky as produce is dirt cheap out here. I was getting these Dandylion grees at our market this spring, and they are an amazing blood/liver cleanser. Potent stuff.

I found that "greens" like spinach, kale, etc didn't put out much juice, but still included them some. But celery and cucumbers put out lots of juice. Wheatgrass is also great! Oh and a large bunch of parsley is so wonderful to juice, great body detoxifier also!

Please let me know about your progress and experiences as you juice! I am excited to hear if it helps to reduce your inflammation as it did mine. Just don't get discouraged through the first couple days of detox, as they are rough (but no rougher than we are used to in living a life with AS).

-Andrea

Sue, I might try the food allergy testing anyway. I don't know how many times my heart rate has shot up from the low 70's to well over 90 bpm after eating a meal (even when I'm lying down and resting). That's said it might indicate an allergy. But I've never been able to track down what was doing it.

Andrea, I can't believe it, but my local Craigslist doesn't have a single juicer on it! Juicing must be awfully popular in Oregon. I might try posting a sign in one of our food coops.

One of the things I'm concerned about with juicing is how it might affect my blood sugar levels. I've been pre-diabetic, but this diet I went on has already dropped my blood sugar levels to near normal. I'm afraid if I juice too many carrots or fruit, that it might shoot my levels up again. I'm not sure how to handle that.

I'm not too worried about the detoxing. I've already gone through some of that when I started this autoimmune diet. And, you're right, that this disease has taught me how to cope with pain and misery.

I lived in Corvallis one winter, over 15 years ago. I absolutely loved it there, but I could never afford my "dream" place in the country - the zoning laws were so tight and the emigrating Californians priced everything sky high. Everyone had warned me about the northwest winters, but I thought it was quite lovely, compared to the winters I grew up with north of Buffalo!