Paleo

A few questions for those of you who follow the paleo diet or a low carb scd (or similar):

Did you improve?

If so, how quick/gradual was your improvement?

Did the diet put you in remission?

Did you relapse at all and if so what did you do when you did?

Thanks

Lodi, that's interesting, thanks. I'll look into the book. The thing is my daughter was a vegetarian from birth until her dx. After MUCH experimentation it's become clear that she does best on lower carb paleo. I know you're not alone thought I do know of someone else who posts on this board who was diagnosed while on a low carb diet. Were you on the atkins diet by any chance?

Post Edited (killcolitis) : 12/30/2012 7:22:15 PM (GMT-7)

I have been low carb/paleo'ish for years now- started with SCD around 12 years ago but gradually, via trial and error, settled onto a more paleo'ish / FODMAPSish diet. (I have even tried going zero carb for a week or so a couple times- the lack of veggie fiber was harsh on me and instead a paleo with plenty of low carb veggies works well in my case).

Improvements were gradual over a few months although I noticed some imorovement after weeks. Alone, diet does not put or keep me in full remission so much as it reduces symptom severity (significant effect, very significant for me) as well as both the severity and frequency of flares. I have attempted deliberately moving off my diet on many occasions- mostly when in remission- and what I find is that I start feeling symptoms again within 24 hours. In good remissions, I can get away with a bit if cheating here and there as long as it is just very sporadic. But like I said, it is no cure all for me and I wish that I could tolerate meds other than pred- alas I do not, so I have to be strict with my diet along with all the other natural therapies- and ored as needed- that I take.

Regardless of which diet works best for ones own genes and Microbiome, i think it's always best to eat "real", un- or minimally processed fresh foods, avoid high loads of sugars, and as much as practical stick to free-range/organic/wild foods as opposed to factory farmed and processed junk.

Post Edited (Probiotic) : 12/31/2012 6:09:33 AM (GMT-7)

thanks all. Joanna, we're doing the AI protocol-ish too but with eggs (i know that' s a big no but). we're also throwing in some sunflower/spinach diet too and so she does eat a lot of seed butter. You don't notice any difference at all from the initial week of improvement? It seems some people improve really quickly and others say they take a year or two to heal. Are you going to continue with it.
Probiotic, my daughter's on asas at the moment and cipro. time will tell what the diet does for her - if it leads to remission and keeps her their that would be fantastic but after these past few years I'm not sure at all what we'll achieve.
Lodi, thanks for the tip. I ordered that book a week ago, hope to get it soon as it does look good.

I don't know if it's helping but I thought it was worth a shot. SHe doesn't eat seeds, just the seed butter at the moment.

Stereo, she was on scd for quite a while when she was first diagnosed. it helped a little but not enough. since then she's been on all sorts of diets - chinese medicine, ayurvedic, candida/low carb/ketogenic and now lowish carb paleo.
I'm glad it's working for you.

I find the paleo changes I made in my diet helped instantly. I've gone from managing symptoms on meds (controlling inflammation) to managing wellness on meds and diet.

I know if I go off the diet, I get the symptoms. It's so obvious. I have to decide if the symptoms are worth eating something that's bad for me. I'm viewing symptoms as not just a short term inconvenience, but debilitating to long term health. I decided I don't want to mess with inflammation.

Yes, all my joint pain vanished.

I've found that I am able to get into remission by changing my diet but it takes much longer than prednisone (weeks/months instead of days).

Here are some points worth mentioning:
- For me the key seems to be low-carb paleo. If I cheat a bit I'll initially have some gas/bloating. If I keep cheating the quality of my stools worsens and eventually there'll be blood. I try as hard as possible to listen to the early signs my body gives me.
- If I'm flaring I try to consume as much homemade chicken soup as possible. I add in turkey necks so it's more gelatinous. I'll cook veggies in it and use an immersion blender to make different kinds of soups with it.
- Adding psyllium seed powder to my daily routine has helped me tremendously. It's been a total game changer for me, I've seen dramatic improvement since starting it a couple of months ago.
- Although everyone suggest probiotics, I've found that many of the brands I've tried have made things worse. The one brand which seems to agree with me is Bio-Kult.

Hope this helps

I have really mixed feelings about the paleo diet. I ate pretty strictly paleo/primal (paleo + full fat local organic dairy) for several years before I was diagnosed with UC, so for a while I felt pretty meh about the whole thing. I mean, if paleo puts so many people in remission, how did I end up with my massively horrible first flare when I had been eating paleo for so long?

However, the more I reflect back on the years before I was diagnosed, the more I think that I may have been sick with UC for longer than I realized, and eating paleo was keeping it in check. In 2009 I went through a period when I was eating a very SAD diet (tons of pasta, low fat processed foods, ice cream, etc) and having horrible abdominal pains. I started seeing some blood in my stool and got very scared, but a flex sig showed only hemorrhoids. The GI who performed the scope told me to drink more, get more fiber, not strain, etc. I figured the hemmies were from constipation from my crappy diet and decided to try paleo to improve my overall health, and over time the pains and blood went away completely. I didn't see blood again until my flare this year, but I definitely had abdominal pains and D on the occasions when I strayed from paleo (vacations etc).

Flash forward three years to my current flare, which started with textbook D, urgency, blood, mucus, etc etc. I went back to the same GI who told me I had "only hemorrhoids" for another flex sig, and he told me this time that I had "only food poisoning" and would be better in a few days. Two weeks later a different GI found moderate-severe ulcerations throughout my entire colon confirmed with biopsies. So do I think I could have been having a real flare three years ago, that a quack GI couldn't identify, and that I went into a three year remission with only paleo? Yeah, I think it's very possible.

I think it's possible for paleo to be effective for maintaining remission, and even to put you into remission from a mild flare, but I do believe it's possible to be beyond the reach of paleo's benefits in terms of inflammation/ulceration. The damage in my gut is so bad right now that even the lowest fiber veggies cooked to death and pureed completely still cause problems. Because of backwash ileitis I have a huge amount of trouble consuming fats, so even salmon or lean beef is a non-starter for me. I hope that someday I will find a remission and heal my gut to the point that I'll be able to go back to a paleo diet and it will help me maintain, but I don't believe it would help me now.

journey2health said...
Yes, all my joint pain vanished.

this is very encouraging, are you giving all (most?) credit to diet here?

Lodi, while I was paleo I was sometimes entirely grain and starch free, at other times more permissive (e.g. adding sweet potatoes, gluten free grains like rice and polenta). With my current flare I eat white bread and pasta... there's no way I could eat enough calories to maintain my weight if I cut them out, unfortunately. I've also done "fanatical SCD" during this flare with no relief.