Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Recent AS - in-over-my-head with elimination diet

I am brand new here and I have known about my AS for about 30 days. Immediately I started researching and found that the LSD looked hopeful. So, as suggested, I jumped right in. I went to the store, purchased all the oils, organic meats and produce I needed to get started and I am now just over 14 days in. Apparently, from symptoms I am having, my body is going into ketosis. I don't even know what that means.

I have a family - twin 2 year old boys and a 5 year old boy - and I get about 30 minutes to myself in the morning and 1 hour at night. I decide between doing yoga and researching what in the world is going on with my body. I am actually starting to feel hopeless. I really hoped that on this diet I could see improvement (I realise it's too early) but instead I am feeling worse physically and definitely worse emotionally. I feel like there is WAYYYYY too many things I need to research and I just don't have time for it as my little ones demand too much of my attention (but I'm in so much pain I can't even pick them up now). This diagnosis and diet have completely taken over my life and I no longer enjoy my children - they are now a hindrance to me as they always interrupt my research. I HATE that. But what am I to do - I know nothing about ketosis or how to get in or out of it but apparently it is something huge and potentially dangerous. Great.

I just wanted to stop eating foods that triggered my pain and heal my leaky gut and then, in time, reintroduce foods to see if they work for me so that I can live a semi-normal life. Instead, I feel like I am completely in over my head, my kids hate me because I am in pain and impatient with them, my husband is supportive in the sense that I can do whatever I need to do to try and get better but other than that I'm on my own. It's all too much and I don't even know how to throw in the towel because when I ate a bit of sauerkraut which tested positive for starch my body flared up more than it ever even did when I was eating full on black forest cakes and drinking pop. For reals - I got myself into a pickle and I don't know how to get help. I feel like I am too much for the facebook group I'm in because I post daily (if you are part of that group and see those posts then thank you for bearing with me).

So...help? I don't know what to do. I don't know what to eat. I don't want to lose more weight (12lbs in 14 days and I'm down to 115lbs). I don't want to feel light headed when I stand up anymore and I want to be able to go to the bathroom again. Goodness me, how did I get myself here?

If you read this far - thank you for listening to my vent.

I feel pretty horrible on low carb even while being pain free. My brain just doesn't get enough fuel. I will say this and it goes against the strict rules of NSD; there is a starch hierarchy that determines how bad my inflammation is. My best tolerated starch is white rice. Second would be white potato. Then dairy, then gluten. I allow myself a banana in the mornings and either a cup of white rice or a baked potato in the evening. These are starches but there are worse starches. I also eat eggs but they are organic cage free brown. Though I still have inflammation it is noticeably lower without gluten or dairy. I sleep pretty well through the night and have low inflammation levels in the day. Something to consider if you can't go all out on the restrictions.

I feel for you. You are sounding overwhelmed...by your diagnosis and sudden change in diet. In one way you are lucky...you have a diagnosis. Most people suffer for years before they know their diagnosis. Things will improve...focus on living an anti-inflammatory lifestyle and healing your gut.
Here are my best tips for you:
Have you read this website...Living Well with Ankolysing Spondylitis? It makes for good reading...positive, uplifting, helpful.
For pain relief, I avoid NSAIDS because they contribute to leaky gut. Instead I take PEA, a fatty acid that is depleted by chronic pain. It needs to be replenished. Google it...Palmitoylethanolamide...100% natural. Very effective. I've been taking 400mg x3 per day...for 4 months now...recently I've noticed a sudden massive drop in pain. I'm virtually pain-free now.
To heal your gut, try bone broth/collagen/gelatin before meals, gut healing powder before meals, zinc belps seal tight junctions in gut.
If you go to Helpful Tips page on this website, read my post about Stewed Apples for Gut Healing. Recipe is included in one of tbe links.
Don't be afraid of ketosis...it is just a different way for your body to fuel itself. Eat lots and lots of healthy fats...olive oil, coconut oil, avocado, salmon, sardines, mackerel, bone broth.
Make your own fermented foods, like sauerkraut - cabbage and salt only. Store bought sauerkraut usually has additives. Will take time to make but much healthier.
Agreed...Family can be a help and hindrance at times. I have limited time for myself too in which to rest, exercise and research. I alternate - exercise one day (vary it to keep it fun), research the next. If you need extra support, never be afraid to ask your spouse, friends to help with chores. Be specific about what will help you best. This may free up some time to research your condition.
I hope you feel more hopeful now.
Things will improve.
Take care, Bunyip.

Hi JP1984!
Sorry for all of your pain! You have come to the right place! I tried the LSD myself. (no bread, potatoes, cake or pasta). But, after months of trying myself, I bought and read Carol Sinclair's book, "The IBS Low-Starch Diet". Things really changed after reading her book and now I am in minimal pain. If you PM or email me your address, I am not sure how to do this, I will make sure you get a copy of Carol Sinclair's book!

I can relate. When I went NSD I felt like I could not go, had no energy, really felt like hell. At the three month mark things really changed. Started feeling better. Within a year I was declared in remission by the head rheumatologist at the University of Utah hospital. You can go back and look at my posts it's been quite a journey. This place saved my life, I was hurting and depressed when I found this place, turns out it was one of the best things ever happened to me.

Congratulations mulehound!! Not many folks get their AS into remission! Great work and thanks for sharing!

Hi JP and welcome - you came to the right place! So sorry for what you're going through. The NSD is rough at first but it gets better - it has completely changed my life.

A few things that helped me:

1. Low starch doesn't need to mean low carb. I also fell into ketosis, which is not harmful but I didnt like the way it felt...so I upped my carbs with low starch fruits (e.g. strawberries, kiwi, pineapple, ripe mango), honey, and occasional Cadbury milk chocolate. I eat about 130g of carbs each day but only 5g of starch.

2. When I lost too much weight I ate more fat to replace starch calories. I'm a big fan of coconut milk (eg. soups, smoothies) and choose fatty cuts of meat (thighs instead of breast, stew beef, etc.) We live in a fat-phobic world so this can be hard to accept but my cholesterol levels are no higher than when I ate starch.

3. After a few hard weeks I took the pressure off myself to figure it out by yesterday. NSD works (it's already working for you...that's why you can notice a worsening) but the first months are unpredictable as you figure out your own personal starch tolerance. You can spend every night on research but you'll still make mistakes, so focus on learning as you go. I noticed some improvement early on but it still took 3 months to perfect it and be consistently low/no pain.

Hello JP,

Sorry for the late post, busy over holiday seasons and not checking Kickas as much as I did prior.

Best to ask diet question in No Starch Diet forum where more dieters may view.

The diet helped me immensely, but has not always helped everyone that has come to Kickas... we are all so different may be the explanation.

For me, I kept it simple at first... lots of salads, chicken, fish, beef. I eliminated dairy at first as well... added in Stoneyfields Farms yogurt after I got pain free.

I had issues with wait loss and energy... had to eat raisins and walnuts in between meals to sustain. Also did 3 day Edgar Cayce apple fast to improve my digestion.

After got pain free and improved... worked on healing intestines with probiotic supplements. Today I eat sauerkraut and drink kefir with milk.

My intestinal health continues to improve each year... I have been able to add in some types of more easily digested rice into my diet.

Goal at first is to get pain free... so that may include medications. I used azulfadine and it worked great for me for 7 years... had to come off of it due to elevated liver enzymes and that is when I started with diet back in 2002.

Best to you,

Tim