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Post by gutsybynature on Apr 9, 2014 8:18:05 GMT -5
If you've found your way to this thread it is probably because you or someone you love has an inflammatory bowel disease (IBD) such as Crohn's disease or ulcerative colitis. I asked to be one of the moderators for this specific board because I have been dealing with Crohn's disease for 18 years now and have finally started to regain my health by following a paleo diet. It isn't easy and my health still isn't perfect (and I've come to accept that it probably never will be because I lost big pieces of my intestines through surgery and surgical complications and the damage to what is left may be very deep) but I'm feeling better than I have in ages and credit it all to the nutrient dense diet I've been eating for the past 15 months.
Can't wait to meet you all and learn from and with you!
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toujours
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Post by toujours on Apr 9, 2014 19:37:43 GMT -5
Hello Jaime ! I was diagnosed with UC in Jan 2011 at age 35. I am currently under Mezavant (mesalamine). I am SCD/paleo since 2012, fell off the wagon a few times, but now I'm back on paleo and hopefully will have he courage to go AIP. Nice to meet you
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Post by rachelpower on Apr 10, 2014 0:21:50 GMT -5
Hi! I'm Rachel, the other moderator of this board - and Jaime, as you know, my story is such an echo of yours.
I developed Crohn's 20 years ago and had major surgery over 15 years ago, losing well over half my colon and a decent chunk of ileum. Until recently, I was in perfect, drug-induced remission on biologics, but after a near-decade on Remicade (infliximab) the efficacy has worn off. My disease has progressed from being very much intestinal and arthritic, to being very much multi-systemic, with pyoderma gangrenosum, vasculitis, tendonitis and some neuropathy rearing their awful heads.
Like Jaime, I realise I may never reach perfect, or even very good, health. However, I am currently seeing lots of healing with a combo of AIP diet, Chinese medicine and, especially, acupuncture.
I hope to be able to share my knowledge and support others out there suffering through this nasty nasty disease.
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teresa
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Post by teresa on Apr 10, 2014 13:18:41 GMT -5
Hi, I'm Teresa, I was started suffering symptoms of colitis when I was a teenager, but I wasn't diagnosed until about 15 years ago. Thankfully I have lymphocytic colitis, and not one of the really awful versions. I've never been on medications, just dealt with the diarrhea and joint/muscle pain as best I could. About two years ago I found out about SCD and tried it for about 3 months, but it was just too hard for me, going from the standard American diet straight into SCD. Not seeing results right away made it that much harder.
I've been eating more or less paleo for the past two years, and now I'm doing the AIP. It's not easy, but after 7 weeks I'm starting to see some improvement in my joint/muscle pain. Having a community of support has made it easier--two years ago there wasn't much out there for newbies.
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Post by gutsybynature on Apr 10, 2014 13:18:48 GMT -5
Thanks for chiming in Rachel. I have lost all of my ileum and a chunk of my colon so we are like reverse twins! (Huh? Does that make sense?)
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Post by gutsybynature on Apr 10, 2014 13:23:23 GMT -5
Teresa - I did SCD too and had some immediate improvement. But it was very difficult and my healing stalled out after a few months and I just generally didn't feel very good (I was depressed, losing weight, etc.). I tried to soldier on because that is what everyone on all the message boards said to do. I eventually got fed up with the "just try harder" response to my concerns and investigated other options, which is what led me to paleo, then AIP. I felt instantly tons better on paleo - I think in large part because it allowed me to add back in starches, which clearly my body needed.
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Post by rachelpower on Apr 11, 2014 18:45:04 GMT -5
Welcome Teresa.
I started typing this as a quick reply, and it's anything but!
I tried SCD back in 2009 while in drug-induced remission, so of course, I couldn't actually tell if it was doing anything for me. I quit 11 months later while halfway through a pregnancy in which I had developed an aversion to fish & meat. I was crying almost daily because I was so hungry and I didn't want to eat any SCD food - the death knells were definitely tolling for it!
I was also diagnosed with fructose malabsorption in 2007, which of course really limits the allowable foods and removes honey, the only allowable sweetener.
When I went back to that kind of diet in Oct 2012, still mostly in that remission, it was actually more for my kids' health than my own. My very highly gifted daughter, then 4, was showing all kinds of sensory issues - many of the characteristics of giftedness overlap with the symptoms of autism spectrum disorders and instead of doing what the giftedness community says to do, which is accept these quirks, I was determined to try to get rid of them. Ahead of her starting school, I wanted my daughter to seem as normal as possible, to make things easier for her. I was, and still am, also motivated by the desire to prevent my kids from developing AI disease.
Anyway, after eating a WAFP diet for 18 months, we started GAPS at the end of 2012. My kids, then 4 & 2, were both scheduled for surgery to insert grommets in their ears. After 5 weeks grain-free, they no longer needed it. My daughter's psycho-motor issues went away and she stopped having meltdowns if she heard a loud noise. She started school much more able to sit still and listen, and has flourished.
While my kids seemed to do well on the full GAPS diet (with plenty of treats and fruit, though from the start, we only ate very very limited amounts of nuts and seeds) and my husband immediately lost 7kg that he hasn't regained, I didn't do well. My stools got worse and worse, a sign my digestion was terrible despite no active inflammation in my gut. I also began to have regular flare-ups of pyoderma gangrenosum. I tried to do the GAPS intro phase again after months on the protocol, and couldn't - I felt too dreadful.
Now I think that GAPS, designed to starve out bad bacteria, starved all my good ones. Sarah and Chris Kresser now recommend that SCD/GAPS is used as a very short term strategy, and I think this is wise. It might be useful for longer for ASD kids, but definitely not suffers of IBD. Studies have shown that Crohn's patients have very low counts of gut bacteria, and are missing some strains altogether. Like Jaime, I now think my body really needs starches to function, too.
As I started to form these ideas, I found Sarah's work on the AIP, and switched over about 6 months ago. At the time I was very unwell, with no Crohn's gut symptoms but systemic inflammation, skin & joint issues and overwhelming malaise.
I didn't improve at all until I started having acupuncture last Dec. Since then I've seen a lot of healing, but don't know if I can attribute it to diet, acupuncture or the Chinese herbs I've been taking. My joint pain has gone, the pyoderma still around but not as bad, and my energy is returning - I think enough to let me add in exercise very soon. The best thing is that my stools are improving. I think this is from the acupuncture, and it is just the best sign.
I really struggle with the idea that my gut is so leaky, that certain AIP-approved foods might be causing a reaction from my gut mast cells and contributing to the inflammation in my body. I also think that fermented dairy, butter and ghee is probably ok for me and wish I could add them back in. I've come to accept that there's not really any reliable way to test these things though, so I've formulated a bit of a plan - I am going to just stick to the AIP without reintros, and go hard on the gut healing with bone broth, gelatin, glutamine, pro- & pre-biotics, and the supplements advised by my functional dr & naturopath (especially specific dermal vitamins & minerals). I'll return to diet tweaking later. I may not be able to gauge the improvement though, as I'm going to start a new biologic drug very soon. If it works, I won't be able to see changes.
So, my thoughts on diet. I'm interested in what you make of all that!
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evawitsel
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Post by evawitsel on Apr 13, 2014 7:11:18 GMT -5
Hi all! I was diagnosed with UC in the summer of 2012. Mesalamine worked very well for me, so I didn't get as sick as some of you have. I started the GAPS protocol right after diagnosis, but that didn't help enough. Flares kept coming and going. I wasn't really sick, but I wasn't well either. So at the start of November 2013 I started the paleo AIP. I only needed to leave out eggs and dairy, because I had already restricted things like nuts/seeds/nightshades. My symptoms cleared within two days and now, almost six months later, I'm still in remission. This is of course great news! But hard to take in psychologically. It's been quite the roller coaster ride… I had been sick for many years before the UC diagnosis (CFS, hay fever, food intolerances, acne, etc.). And now the UC is gone, I'm really worried that it might come back :-( So I still have some work left to do in the stress relief department! At the moment I still have some issues with bloating and feeling too full after a meal (usually not very hungry for dinner). I think it has to do with too low stomach acid, since HCL seems to help. I also feel that SIBO might be an issue. I guess SIBO is an issue for most people with IBD… I'm now reading Dr. BG's protocol for SIBO, I might try something like that: drbganimalpharm.blogspot.nl/2013/11/how-to-cure-sibo-small-intestinal-bowel.html
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Post by rachelpower on Apr 14, 2014 9:31:26 GMT -5
welcome eva!
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jw
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Post by jw on Apr 15, 2014 6:32:57 GMT -5
Hi. I am jennifer. I am newly diagnosed with Celiac and Crohn's (January 2014), but I've been sick since 2002. After diagnosis, I was treated with Pentasa, but was allergic. After being explained my next options, I searched for non-drug alternatives. I stumbled upon AIP, but thought it would be too hard. After two more months of not being able to function--be the wife, mother, friend, employee I was before, I started the elimination phase of AIP the first week of March 2014. But I also added the restriction of eliminating high FODMAP foods. It has been the most difficult thing I have ever done in my life. I am a "square peg through a round whole" type of person and am lucky to have a Western Medicine doctor willing to hold back on the pharmaceuticals and give AIP a chance. I am currently on Prednisone and will taper off that to see if AIP keeps me on the upswing.
Although AIP has been extremely time consuming (not to mention making separate meals for my three kids and husband), I am 100% on board because of how it has made me feel. What this experience has done for me is indescribable, and I thank everyone going through this experience for sharing your recipes, your struggles, and your research.
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tawhai
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Post by tawhai on Apr 15, 2014 19:31:58 GMT -5
Hi, my name is Joan. I’ve just recently joined the community. Thanks for the wealth of info here. Great reading I’ve had Crohn’s disease for 18 years. I thought I’d share my experience with oxalates. A year or so back I developed very painful vulvodynia which led me to a low oxalate diet. There is one main microbe in our guts that degrade oxalates – Oxalobacter formigenes. It is a very fragile bacteria and it turns out that most Crohn’s sufferers don’t have this bacteria (maybe killed by antibiotics or decimated by chronic diarrhea) If you eat a diet high in oxalates or are a high endogenous producer of oxalates it is going to cause problems. The irony was that I developed vulvudynia and a worsening of my Crohn’s when I switched to a Paleo diet. Many of the paleo staples are very high in oxalates e.g. spinach, almonds, beetroot, chard etc. Things certainly improved (after a rocky phase-in period) when I went on a low oxalate diet. I’ve just started the AI Paleo protocol combined with my low oxalate diet and hope for further improvement. When I read of Crohnnies having unexpected setbacks on Paleo I do wonder if they have inadvertently increased their oxalate intake. Some excellent reading can be found at www.lowoxalate.info/ and groups.yahoo.com/neo/groups/Trying_Low_Oxalates/info
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Post by gutsybynature on Apr 15, 2014 19:45:44 GMT -5
That is very interesting! Thank you for sharing.
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Post by alisongregory on Apr 15, 2014 23:22:03 GMT -5
That's interesting as I'm low fodmap but I can't do chard. I have spinach some days and not others and still get interesting UC moments but nothing terrible. I will keep an eye out on the oxalates too... I have checked the link just wondering out loud if they are threshold like fodmaps or something to be cut out. Just because I know my gut bacteria needs this stuff and I only want to cut out what I have to and have whatever variety I can.
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Post by alisongregory on Apr 15, 2014 23:33:19 GMT -5
I've also noted issues with broccoli before, and things are higher in oxalates cooked than raw... Sigh. Going to step back from this, wait a little longer and then think about it another time. The stress of possibly yet another elongation might do me in!! Thx though seriously :-)
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tawhai
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Post by tawhai on Apr 16, 2014 2:23:47 GMT -5
Oxalates are somewhat different from FODMAPS; if you are not degrading them they are a direct poison to you. If you have been on a high oxalate diet you have to decrease really slowly otherwise you can trigger oxalate dumping. This is when oxalates are drawn out of where they have been stored in your tissues and excreted by the body. This can be very unpleasant.
Actually boiling veges and discarding the water can reduce the oxalate level of veges a bit, so cooked can be better than raw in some instances.
I’m on a low FODMAP diet too so it is rather challenging especially as I’ve just started AI Paleo which cuts out more food groups; but it is possible.
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