Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group So depressed...

I feel so defeated. I was doing pretty well on NSD but still having a lot of bowel issues that seemed to be like IBS. After doing some research I decided to start acacia fiber from Heather's IBS site, quit coffee and start AIP . Well, I became extremely constipated without the coffee as that was my go to every morning and it worked like clock work. But I knew it would take some time with the fiber to work. Here is where I may have screwed up though. I decided to do AIP, but didn't stick to NSD. I had sweet potato and bananas and I am in severe pain like I have not had in awhile. It seemed to come on so quickly. I'm sure the constipation is not helping either. I just poured myself a cup of coffee and feel somewhat guilty for caving but feeling this awful I honestly don't care. I was really hoping AIP would be the answer...I'm feeling really confused as it seems like the diet to help IBS totally conflicts with NSD which could be why my pain feels better on NSD but my bowel symptoms persist. I'm not sure what to do at this point. What have others done that have IBS/IBD ? I have been looking at Heathers IBS site and got a printout of her diet for soluble fiber vs insoluble which of course the foods to control IBS are some of our no no's. I'm hopin the acacia fiber is ok as I would like to stick with it. The other thing I have recently added in was this homemade tea that I fell in love with consisting of lemons, oranges, turmeric, honey and ginger all stored in a mason jar and some scooped out and added to hot water. Love it but do you think it's problematic?

I find this whole thing so discouraging and can't imagine having to always eat this way. Especially since I think back to a few years ago when I ate whatever I wanted and was totally pain free. Which of course leads me to wonder where this all came from. I sit and eat breakfast with my coworkers every morning and watch them scoffing down bagels and oatmeal and they feel great while I am eating my NSD and still having issues....it all just stinks!

I'm sorry you're feeling badly

My plot daughter suffered with IBS her entire life - LITERALLY FROM BIRTH, and one of my sisters has it so bad she sometimes passes out.

I think those of us who haven't had it can't even imagine the pain.

Constipation sucks! But the diarrhea without digesting food sucks even more.

I remember the constipation since I was a very young child. I actually do better as an adult, knowing what foods help...lots of prune juice in my childhood!

The opposite was a big problem for the first few years of my 30s.

My ileum was inflamed and had small crohns like ulcers when scoped. and that was when I wasn't flaring, so wonder what it looked like during bad flares?

Anyway, the humira helps. Before that, the methylpred helped.

Since humira, haven't had the diarrhea with lack of digesting food, but the constipation persists somewhat.

Truly, what makes me go is the humira. I'll slow way down (going every 3 or so days, pellets or worse) and then humira will make it almost normal for a few days.

Other things that do help me:

magnesium (probably)
probiotics (maybe?)

cabbage! (sauerkraut, red cabbage, cole slaw, stuffed cabbage) and I think the other cruciferous veggies like broccoli and cauliflower and brussel sprouts, but really cabbage for sure. I probably eat cabbage just about every day in one form or another lately. If I don't, I'll be constipated.

beans. I know they are starchy. but beans help me go.

I think some fruits make me go: apricots, berries, apples.

cabbage and beans pretty much every day.

and of course the obvious like enough fluids (water and tea for me) and enough exercise and enough fiber in general.

yeh, life isn't fair. But everyone has their cross to bear. Those people without bowel issues are probably dealing with something else. Even if they have their health....I think everyone I know has some challenge in their life.

and don't feel guilty. the point is to do what it takes to feel better, that's not caving, that's listening to your body.

Lulu - can understand yr depression. Gut problems are hell to cope with. I have IBS / IBD. Initial colonoscopy found pre-cancer polyps (adenomatous) and the subsequent colonoscopies found the odd one or two non-cancer forming polyps. Past several years have been hell. Saw a protologist here in France - has a high reputation. Ha ! He decided that what I needed was Fiobre... Followed the strictures, Psyllium. Three days into the mission I was really ill. Completely bloated, in considerable pain. Went dead cold, shaking, bloated. Fibre impaction. Stopped taking the beastly stuff. Took three more days to recover. It had ffelt like my colon was going to perforate ! Agony. Yes. I wrote and told him, requested another appointment, but heard nowt more from him... Oh, and yes. Had sent him ALL my notes, but he hadn't cared to read a single word of em.

Next step. Cut out pretty much ALL fibre. It did helped. Also, gluten. Cut that out. Am now virtually gluten free - instead eat galettes : bio rice, corn, or mixed cereal. Are a source of fibres and are gluten free. OK with cheese. I eat occasional berry fruits, odd apple or pear - very odd and no bannanas. No red meat - game birds, bone broth. Am careful with starches. At LAST have a modicum of control. Still yo-yo between constipation and diarrhoea, but not so debilitating as before.

Now. Fell over Dr Konstantin Monastyrsky on f/b the other day. Downloaded the huge chunk of information from his book -

Fiber‘s role in disease:
A lifelong demolition derby

https://www.gutsense.org/fibermenace/fm_chapter1.html#.Vp1FZ-pRVJw.facebook

This guy is truly sound and his book a **Must for every gastro and GP and nutritionist - and would include as a MUST on the syllabus of medical students, who are given a 'one day' course in nutrition !

From my own reaction (now) to fibre, I would agree with him. Fibre can be a menace. Need to be careful with fibre. Try cutting it down. And as for coffee - I drink it all day long ! Only instant as the 'real' coffee at the rate I imbibe - 6 - 8 mugs a day ! - would make me more than nauseous !

Take care, bonne courage -

Molly C - Keeping on, Keeping on (as we all do, innit...

Hi again Lulu -
Quote : "The other thing I have recently added in was this homemade tea that I fell in love with consisting of lemons, oranges, turmeric, honey and ginger all stored in a mason jar and some scooped out and added to hot water. Love it but do you think it's problematic?"

Sounds good to me. I have one pretty much the same, but with lemons and bio Gunpowder Green Tea. Delish. Fab in hot weather. Store in fridge in GLASS bottle. No more than three days though.

Tumeric is excellent for inflammation. Not much taste to it. I add it to soups, stews, egg dishes, gravies, sauces etc etc. You can find fresh tumeric / curcumin rhizome. Wear fine surgeon type gloves to peel and chop, as it stains the fingers summat rotten ! And I use fresh ginger, chopped very finely.

Take care - go well -

Molly C

Hi lulu,

I have been fighting my AS with diet changes for 23 years and had dead-ends before.

I have liaised with researchers that believe that with the protein mimicry reaction that other bacteria (not just Klebsiella) or food proteins may be involved.

My guts have been in bad shape a lot of the time - and I found I would wake with lower back pain but would clear after I could get things moving. If I fail to get things moving then inflammation build.

I found a shot of fresh pomegranate juice would act as an antibiotic and settle things - before a full blown reaction.

Then in the last 3 weeks a new discovery has been "Banting Diet" - no sugar (apart from a little 70% dark chocolate) with a coffee.

I have made bread using ground flax, almond flour - GF baking powder, eggs, mixed seeds, fennel seed, water and olive oil. My wife has also made Banting Crackers.

This diet has changed my guts completely - and I have lost 8lbs also

If it helped you before then it will help you again don't get dis-heartened, perhaps try a short fast to settle down any gut inflammation?

Hope you can get some relief soon!

Hi there

Sorry your sad , i hate feeling sad it just well...sucks.

For me my nutritionist was worried when I cut out all the bread as that is a main source of fiber for a lot of people. I tried adding lots of spinach and greens to my eggs and all the cruciferous veggies (shoutout to sue22 for that education) but still I couldnot keep up with the amount of protein i was eating sooo....

my solution is coconut flour I make microwave coconut bread in the morning just enough for 2 slices and then toast them a bit - now I am not a fussy eater - but this works it is slightly spongy and more sweeter (i suppose a more patient fussy baker can experiment with this) but it works . Then I can have my Avo or salmon or egg or whatever on this base. Has helped to loosen up stuff and of course fruit to snack on in the day like apples or pears but I got to watch it because I have braces at the moment and I tried eating dried fruit but because its so easy and OMG sugar aaaaaarrggghghghghghg yum yum munch.....well you get the idea with the lack of all things complex carb well when I get a sugar hit I can go a bit physco ( note to anyone out there dont start a NSD diet over Easter - the amount of choc easter eggs when i was craving starch for those first 2 weeks was unbeliveable - when my wife finally found me I looked like a 5 year old kid who had found the secret stash - chocolate stained mouth and fingers with easter egg debris everywhere lol

Hello LuLu,

Been there on the investigative diet trail only to become discouraged at times. Hope things turn around for you and doing better soon.

Keep the head up.

Tim

Thanks everyone for the replies. I ended up doing a 3 day Apple fast with not the best results. Some decrease in pain and my bowels seemed a little better during it but at the end I felt extremely gassy and it wasn't long before all my symptoms returned. But the good news is I may have found something that is helping. I bought a yogurt maker and made 24 hr SCD yogurt. I was worried I wouldn't do well with dairy but the fermenting process removes the lactose and it has a ton of probiotics . It has opened up so many more food options for me and my bowel issues and spinal pain are quiet

if the yogurt helped, I buy a coconut milk yogurt since i can't have dairy. maybe you could make yogurt starting with coconut milk?

glad you are feeling a bit better.