Kickas.org Forums Treatments, Drugs and Alternatives NSD and diet-related; Trying to come off Humira and have failed

Hi
I've had AS for 24 years, I managed without using medication for a long time, but eventually I had to take anti inflammatories. About ten years ago I tried anti-TNF treatment as my anti-inflammatories were taken off the market and didn't really enjoy their side effects. Within two weeks I felt an enormous difference, the constant pain in my shoulders and knees went, I could get up without needing five minutes to straighten out my stiff spine. Over the last ten years I have regained a lot of mobility. However, I also found it made my sinuses worse, I have allergic Rhinitis anyway, after the anti TNF I had constant sinus infections and sinus headaches for a year. I also developed alarming gut problems, pain and vomiting after eating certain foods/beverages. It might be my gut would have done this anyway after years of anti inflammatories but it gets particularly bad during my period for some reason. I've managed that by understanding what I can and cannot eat. Alcohol being the worst offender. I had numerous tests but they couldn't find any pathology, the only change was my gut was more angular than round where it bends.

Hi I've recently stopped my anti TNF treatment, about 8 months ago I just thought I'd see how long I could manage with out it. The idea of taking immunosuppressants for my entire life does not appeal to me, I also find it a bind with the extra complications when I travel because of my already weak gut. I've not had much pain since stopping Humira until this week. I can't help wonder if it was triggered by food, I ate fish and chips (I don't eat this kind of thing often) and had some wine. What was a niggling pain became unbearable. My neck is so sore I can't move it and some ribs at the back on the same side hurt too. The weight of my head is enough to make my neck worse if I don't lie down every now and then. It's been like this for three days now and I'm surviving on over the counter paracetamol and codeine. I started to cut back starch two days ago and I'm waiting for the book to arrive. I just took a Humira injection and because I can't stand it much longer and I don't think I can work like this. I'm moving next weekend too so I need to be able to function. I don't feel put off trying again though. Next time I want to start the diet while I feel well so when the Humira wears off I have a head start. I have acupuncture once a week and Chinese herbs which should help. I saw a nutritionist about 8 years ago after developing the gut issues and had the test for kelbsiella, it was negative so we didn't try the diet. Now I'm reading it's not just kelbsiella that can cause this disease. I tried the SCD a while ago for my gut but found I couldn't tolerate the nuts, I have problems digesting heavy fats. Nut flour just gave me horrific dirhorrea. Any advice and support would be great, feeling pretty low today.

I'm new to this, so I'm no expert but I've had my best luck making homemade chicken soup (ala GAPS intro diet) The way I'm making it might be too low carb for long term if you need carbs, but it's made me feel really good for the last week and I plan to keep eating it for about half my meals. Might be a good thing to eat to keep the flaring at bay and to get some energy because it's not low calorie but very gentle. There's a lot of prep to start but then you'll have food for days.

If you're interested here's what I do - I get an organic chicken and cut the skin open to expose the joints (apparently simmering the cartilage is beneficial for the gut, same with eating the liver and organ meat) I simmer the whole thing in a pot with about a gallon of water for about an hour and a half. I've also added in grassfed beef marrow bones. (Grass fed animals have a better omega-3 fat balance) When it's done cooking, strain off the broth and debone the meat. You'll have enough ingredients for several soups. When you want to have some combine some of the stock with some chicken and some starch free vegetables and simmer til the vegetables are soft. I've been using spinach and bell peppers with either some parsley or basil. I've also used tomatoes but I think they may be less gentle on the stomach. For salt, a himalayan or sea salt with trace minerals is nice.

I hope this is helpful in some way. It's been my best NSD go-to since starting a couple months ago.

I I tried that diet when I got gut problems but was worried about the weight loss, you basically eat soup for two weeks don't you? The recipe I saw had only chicken and carrots in it. I usually make my own stock and follow some western price foundation principals. My gut has improved massively since I was more careful about what I eat.

How long before you had any benefit from the NSD? How did you manage flare ups?

Yeah you basically eat soups and homemade probiotics (sauerkraut, dairy if you can do dairy) and phase in other foods as you can handle them. I guess everyone is different, I actually started gaining weight after losing about 15 lbs. from when I started NSD. You can make up your own soups but the options are pretty limited if you're avoiding vegetables that turn starchy when cooking. (Hence the bell peppers and spinach only) I make sure there's a lot of fat in the soup which seems to give enough energy and calories.

I'm sorry, I wish I had more and better insight. I'm still working it out honestly. I've gradually felt better, starting with salads and meats but was still very hungry. I couldn't seem to get enough calories and I suspect all nuts except a handful of macadamias at a time to be a problem for me too. Those seem okay but only if I don't over do it. I also cut out all alcohol and coffee from the start. About a month ago I also cut fruit to avoid the sugar. That was another point where I noticed a positive change. It was gradual but after a few day of not eating fruit I realized that my knees didn't feel achey. Probiotics seem to help but so far only in small amount otherwise they seem to have the opposite effect. I notice that my muscles feel very tight sometimes so I try to hydrate like crazy and I've been taking magnesium. I also take fish oil or borage oil every night.

I don't know if any of this is helpful but I hope you find something that works and that you feel better.

A quick fix for salad dressings:

Request a package or two of real mayonnaise from the restaurant, add in a package of sugar from the coffee counter. Stir it up with the mayo. Makes a tasty dressing. You could substitute the sugar for savory seasoning I suppose but I haven't tried it. I like the slightly sweet mayo. It's my favorite dressing!