About
I’m just a dad of a kid with Crohn’s who spends way too much time researching safe and effective strategies that can help people suffering from autoimmune diseases get their lives back.
My goal with this blog is to provide a framework and references so that anyone can make sense out of what is going on with autoimmune disease and have an intellegent conversation with their doctor.
The first post – The Core Strategy and the Getting Started Links – are a good place to get started. The Core Strategy provides a summary of how I approach things and some guidelines on what to do…with lots of links.
Please do let me know if there is anything I can do to make it easier to understand these strategies!
Crohn's Dad 
Thank you for the info!! I have been reluctant to start 6mp or remicade. I have had crohns for 30 years with 2 surgeries for blockages. I am very interested in where to get the products that you recommended (Boswellia, curcumin and LDN) Do you also give your daughter aloe? I did just received tumeric formula and maxi d3 concentrate from digestive wellness.com. is this the same as the one you talked about? I am trying to reverse inflammation to stay out of surgery. I am also considering pentassa. I would also like to add a probiotic. How do we know that all of thgese remedies are safe together? Can you tell I am not fond of medications? I give you much credit for taking a proactive approach to help your daughter!! She is lucky to have a dad like you!!!
Thank you!!
Lisa
I’m not sure I can get it all in one response, but here are some thoughts. As you can see, I’m not a big fan of immune suppression as a strategy. Too many risks, not enough reward. You know that the biggest thing you can do is diet. Supplements won’t do much without a good diet foundation. After diet, LDN (which is a drug) is a great idea. You can get it via prescription (we do) or you can buy Naltrexone yourself from an online pharmacy like http://www.alldaychemist.com or http://www.unitedpharmacies.com Boswellia is best in 5Loxin form, and Curcumin in the meriva formulation is what we use. Just google these and you’ll get a bunch of options. Aloe is a good idea…but please use only Georges brand. It’s the only one that is fractionally distilled. On pentasa, although it is the least nasty drug in the standard line-up, it is not particularly effective for Crohn’s, and with this approach, you just won’t need it. Please let me know how else I can help.
Alan
In regards to diet and LDN. I just started the SCD diet and ordered LDN from United Pharmacies only to realize they use lactose monohydrate as a filler. Eesh. Do you have any recommendations? Will this be large enough a quantity to affect my diet? If I should order another brand to be compliant with my diet, do you have a recommendation?
Thanks much
Justin
Justin, Technically the lactose filler is not SCD legal, however I doubt it will have much impact in the small amount that is in each pill (you’ll be taking less than 10% of each pill each night). Good to know though, I don’t think that Allday uses lactose as a filler.
I get boswellia and curcumin online. The boswellia is 5Loxin, and curcumin is meriva. As for LDN, we get it from Skips Pharmacy in Boca with a prescription. You can get Naltrexone on your own – without a prescription from http://www.alldaychemist.com or http://www.unitedpharmacies.com and make it yourself by diluting the 50mg tablets in distilled water. D3 is best in either olive oil, or mct oil. We have tried aloe, and the only aloe to get is Georges brand as its the only one that is fractionally distilled.
As I’ve mentioned, pentasa/mesalamine is not a great idea for crohns. Studies show that it is not any more effective than placebo. And all of these strategies work together very well. We do work with an integrative MD…but I’ve also done a bunch of research.
Thank you so much!! I have recently been trying SCD. I ordered some food from digestivewellness. Serovera is a product for aloe that seems to keep coming up but I will look into Georges brand.
Thanks again!!!
Lisa
With AMP (Aloe Mucilaginous Polysaccharides), I just can’t get over both the cost, about $100/bottle, and the fact that its not SCD legal. Georges is much cheaper, and removes the polysaccharides. Let me know what you decide, and how it works for you.
Julie, how long on SCD until you were symptom-free? I’m cuouirs why you are trying LDN if you are symptom-free on SCD? My son’s allergies seem worse since he’s been taking the low-dose naltrexone, but I also took him off all allergy meds trying to take away anything that could be making the UC worse we did that a few months before starting the LDN. He has always slept like a rock, and the LDN hasn’t affected his sleep at all. I’m thankful for that. Best wishes to both of you.
Honestly, given how cheap and safe it is, I’d suggest LDN as a basic for everyone.
I’m glad that you are taking control of your health and that you are feeling better. However a macrobiotic approach is not at all similar to SCD. In fact it is the exact opposite and not at all a good idea. Grains are at the root of the problem…and brown grains are worse than refined. Grains contain gluten which is the primary protein that causes damage to the gut lining, and the carbohydrates in grains are also poorly digested, literally feeding pathogenic bacteria and further damaging the gut lining. Whole grains are even worse because the bran layer also contains phytates which hinder mineral absorption. And it is very important to note that while a vegan approach seems romantic, it is a poor health choice. You can survive without animal fat/protein, but you really can’t thrive and you greatly reduce your bodies chances of healing.
Please don’t take this personally. I encourage you to read the links, do your own research, and come to your own conclusions.
Being a Vegan is not romantic at all. It is very difficult, but it works to control my crohns. I am now at almost 10 months with no flare ups and no drugs.
I do not take it personally because we all have to do what works for us. The Macro approach has worked for me but for some the SCD works better. What we do have in common is that we are trying to take control of our health and saying yes diet does correlate to this disease.
I’m glad you’ve found something that works for you. Keep me posted on how things go.
Hi Alan- Glad you started your blog. Wanted your opinion. My 12 yr. old daughter was dx w/severe Crohn’s last Sept. Started Remicade in hospital then stopped after 2nd infusion caused anaphylactic response. No drugs since, only SCD since last Nov. 1. Her blood labs have been perfect since Dec, but her Calprotectin has been in the 300’s, now last week it was 416. Her Dr. has been pleased w/ blood labs since SCD but will likely want her on Humira if her Calprotectin goes any higher.
Do you have suggestions for bringing down inflammation? I often make homemade bone broth soups, she eats SCD yogurt daily, rarely has many sweets except one small almond flour pumpkin muffin in the a.m. somedays and honey w/yogurt. She has 1-2 SCDophilus probiotic (10 billion cfu’s)per day and D3.
Has your daughter had Calprotectin tests to track inflammation or predict flares? Wondering what your daughter has done to bring inflammation down.
Also my daughter took LDN for a while in liquid form (she can’t swallow pills) until I e-mailed Dr. Zagon who said to stop the liquid form she was on since it could be the wrong dosage.
Her only symptom since starting SCD has been varying loose stools, never normal. And never normal Calprotectin results. But she feels great. Just concerned her inflammation is increasing.
Thanks so much!
The # 1 thing for inflammation would be to get back on LDN. There are thousands of people taking liquid LDN with great success. You can get it compounded as a liquid if you are concerned about equal dosing, but even if you are diluting the 50mg tablets yourself, you can get very close to equal dosing – just do a bit of swirling before you dispense each dose. Doing so is certainly better than giving up on LDN. Next would be the combination of boswellia and curcumin. Both are natural TNF blockers and should make a difference along with the diet & LDN.
For loose stools, look at both s. boulardii and l. glutamine. They should help big time.
Hey Damion update on the LDN start-up. It’s been about 2 mnhots and I’ve remained on the 3.0 dose Sleeping good but definitely still needing more sleep to feel great. The blues kind of passed and I’m slowly feeling a bit more like my energetic, happy self. Was considering dropping to a 2.0 mg dose to see if less felt better, but may stick with 3.0 for awhile longer. Noticeable difference is eating the legal SCD foods that bothered me before LDN or eating something off the diet results in somewhat less of a reaction than I experienced with just SCDiet before taking LDN. Am going to let my 17 yr old give it a go. Julie
Another great reason to add LDN. Flexibility!
Just found your blog when googling beinnging LDN and I’m interested to know if you’re currently on LDN therapy and how it’s going. Also I have guttate, plaque psoraisis, onycholysis, and wonder if the LDN might help. I began 3.0 mg on Wednesday and realized that I probably should not have stopped Entocort abruptly, but I did, and can’t change that now. I’m enjoying a new approach with a practitioner who is looking at my whole body connecting the dots since I have the other autoimmune issues. Did you start the LDN and how has it been if you did?
Have you had any experience with colangious or microscopic colitis?
My daughter has crohn’s but microscopic colitis is still IBD and an autoimmune disease so it has the same underlying issue – “leaky-gut”. As a result, the same strategies should work. I would highly suggest both S. Boulardii and l. glutamine which will help with D.
Hi Alan,
My 14-year-old son was diagnosed with CD in Sepetember after having bloody stools for a month without telling us. He was put on 40mg of Prednisone and 1500 mg Colazol. After his symptoms improved, his GI doctor started tapering off prednisone. Once the dose of prednisone was 5mg, he had a nasty flare-up, 6-MP was added and a higher dose of prednisone- Colazol was discontinued. Again everytime we taper off prednisone, the symptoms flare up. Before Thanksgiving he was hospitalized and put on 60 mg of prednisone and 25 mg of 6-MP. We are tapering off the steroids again and now the dose is up to 20 mg and he is not showing any symptoms.
My son is allergic to all dairy products. His diet is terrible- he loves sweets, sodas, and does not like vegetables. Since the diagnosis, he has been a bit more receptieve to eating healthier options and stopped drinking soda and candy. He loves bread and potatoes and consumes a lot these foods everyday. I’m very worried about the long-term use of 6-MP and would like to explore LDN. Was your daughter on any other medications when LDN was started? Was her GI doctor receptive? How wel it is working? Is she taking any other medications with LDN? I’m a bit skeptic since some of the posts I read flaunt LDN as a magic drug for a lot of diseases: MS, lung cancer, RA…etc. Your input would be greatly appreciated.
Anan, I’m sorry your son is having such a rough time. It is possible that LDN could help your son without making diet changes. I’d be conservative and wait until he has weaned prednisone down to 10mg (although some are now saying that is not critical). LDN is not a magic cure, but it does help all autoimmune diseases…because all autoimmune diseases essentially have a common cause – leaky gut. As you can tell by my post, I am concerned that you will be asking LDN to do alot. It is possible for LDN alone to turn things around, but because diet is so critical – both as cause and treatment – that you may be dissapointed.
The only medication my daughter is on is LDN. And that has given her some diet flexibility. She does well on more of a gluten free/casein free diet. Our GI was not at all receptive even though I had educated him years before about SCD, and I connected him with Dr. Jill Smith who ran the LDN trials at Penn State. Even that did not persuade him. As a result, we started LDN without his approval and eventually switched to an integrative MD who supports the use of LDN, diet and key supplements for treatment.
What will help your son the most in making diet changes is making those changes for your whole family. There are some good tips on motivating kids at http://www.pecanbread.com — or maybe you can get him into the paleo movement. Appeal to his inner carnivore!
Alan
Thank you Alan. I agree with you that diet is so important and we are working on it. I emailed my son’s doctor the journal article on Dr. Jill Smith’s study and we’ll see what she says. Judging from the experience of many with traditional medicine doctors, I’m not sure that she will be receptive.
Unfortunately, you need to be a very aggressive advocate for a diffent approach and often that still doesnt work, but it is worth a try. However there are doctors out there that “get it” you just have to find them.
I came across your website from paleo hacks. Very interested in reading what you have to say about Chrohns.
Thanks! I hope it helps you and others get to a better place.
Hi Alan,
We met on the CCFA forum. I just read your link about boswelia. I am intrigued due to the comparison with Mesalamine. Have you guys tried this yet? Is it something to take daily? I have not taken any Crohn’s meds yet and I am trying to keep it that way due to the side effects. I would love more info if you have it.
julie
Hi Julie,
Both Boswellia and Curcumin are very interesting supplements. My daughter takes both and they are supposed to work synergistically (on different pathways – 5Loxin & Cox2). Both reduce pain, inflammation, and act as natural TNF Blockers. Make sure you get the 5Loxin form of Boswellia, and the BCM-95 form of Curcumin as they are far more potent than the standard stuff. As excited as I was to hear that this form of Boswellia works as well as Mesalamine, it is tempered by the fact that recent studies show that Mesalamine works no better than placebo for Crohns. Next to diet, and LDN of course, these 2 make alot of sense. And of course, No Side Effects!
Hope this helps!
Alan
Hi Alan,
Thank you for writing back. Does your daughter take them together daily? Would you be able to recommend a good brand or source? Has your daughter taken LDN? if so does she take it daily? Sorry so many questions but I see my doctor on tuesday and I want to address these things with her. Thanks for all your help.
Best,
Julie
I’ve found the best prices on the Life Extension brand at Swanson and iHerb. She does take these along with LDN daily. I do encourage you to download the LDN study pdf and bring it to your doctor. Let your doctor know that Dr. Jill Smith who ran the study will consult with them. If that doesn’t convince them to try it, you should find a doctor that will work with you. They are out there!
Hello, i feel that i saw you visited my website thus i came to “return the prefer”.I’m trying to to find things to improve my web site!I suppose its good enough to use a few of your ideas!!
Please do spread the word. I’m on a mission to end ignorance (mostly from the medical community) and suffering…and I can use all the help I can get. So spread the word!
Thank you so much for all you’ve done here to help us! I have a 13 yr. daughter who’ve we’ve just started on SCD. I was wondering what brand of S. Boulardi do you recommend? I am so confused by all the brands! I bought one made by Metagenics. . it came wrapped in some refrigerated packing via Fed Ex. . then second time I got one from RenewLife supplements. . but it did not come in the refrigerated packing. I called them and the rep said, “oh it does not need to be refrigerated.”. . I just want a brand I can trust with my child’s sensitive gut! I read the testimonies from Renew Life and they looked great. .. but I don’t think their book advocated grain free diet. . . just alot of supplements for IBD. Again, can’t thank you enough for all the great info you have put here.
I have a daughter with crohn’s. She is 17 now and suffer from it for 10 y. Very nice page, thak you.
Do you have any experience or thoughts on an elemental diet, something like Ensure Plus. I read studies where that it works as well as prednisone at inducing remission.
Heidi, The idea of an elemental diet is a good one, however I’m baffled by the ingredients that are used in virtually all the formulas. Most are terrible – Sugar, dairy or soy protein, high omega 6 oils (pro inflammatory) and then some branch chain aminos. There are mixed reports on the effectiveness of this approach. But I’d bet that if you made your own formula out of quality ingredients that are known to heal, the results would be far better. An ingredients list could include: Gelatin, Bovine Protein (check out http://www.proteinfactory.com) branch chain amino acids, l. glutamine, zinc carnosine, DGL (from licorice), and coconut oil for fat (guess it would have to be above 72 degrees for that to work). Let me know what you think!
I think you have an interesting idea, but I think I will give Ensure plus a try and see how I do – I like knowing the calorie count so I get sufficient nutrition and calories if I don’t eat “real” food. Thank you for your reply.
i am just a mom researching everything i can for my 14 yr old daughter so thank you so much for the information you share and you can never research to much for safe solutions for our kids.
my daughter was dx with crohns this past July 2011. we have already been to two GI doctors and a homepathy (which we love). doctors have only been able to help her with prednisone, they want her on Imuran but she vomits every time she tries it. they think its in her head, we know better. i have discussed LDN with her current GI doctor but he will not prescribe it. i see another flare coming on (seems to happen each month at that time of the month). i have an appt with a doctor that does prescribe LDN for crohns but her appts not until the end of April. do you have any advise of what she can do to get thru this flare until her appt in April. we dont want to go back on prednisone. shes currently on multi vitamin, vit D, fish oil, nexium, iron tablets and apriso (which apparently doesnt help because she keeps flaring). also, does your daughter have problems during or before her period, it seems to bring a flare on for mine. oh my daughters diet isnt the worst and she has made some changes when she feels the negative effect of eating something that she shouldnt, we’re still working on that. again, thank you !!
Sharon, Sorry to hear about your daughters diagnosis. This is not an easy road. Here are some thoughts. Until your appointment, you can get Naltrexone on your own and get started right away. Two sources online are http://www.unitedpharmacies.com and http://www.alldaychemist.com keep in mind it will take about 2 weeks for delivery. You’ll have to dilute the 50mg tablet in 50ml of distilled water, then dispense the dose each night before bed. I’d start out at 1mg/ml and go up 1mg/ml each week to a max of 4.5mg/ml. Doing it this way will minimize any side effects during the adjustment period. My daughter was really tired/foggy the first few days on LDN. Next is diet. I can’t stress enough how important diet is. Since diet is the primary problem (grains/legumes/dairy) it is important to eliminate them to allow healing. Going on the GAPS or SCD diet is the best way to do this. And cutting out the carbs will allow her to stop the nexium (please read the article on GERD in my links) check out orange peel oil/d-limonene while transitioning as a precaution. Going on LDN will speed up the healing and eventually allow some diet flexibility.
If you are not already, please consider B12 shots (we do them monthly), Getting D levels up to about 75…that may take 10,000 ius/day of D3. And Bone Broth – see the link I have in the core strategy post. She could do gelatin and or Collagen Hydrolysate instead http://www.greatlakesgelatin.com/consumer/CollagenFAQ.php
My daughter had the exact same problem with imuran – nausea/vomiting are very common initial reactions. For us that was a blessing as we never wanted to return to immune suppression. The period problem is also common, but not with our daughter.
Hope this helps. And please do keep me posted!
Hi Alan,I am 60 years old and was diagnosed with Crohn’s a month ago. I switched from pentasa to another medication and thanks to your blog I take now the LDN for a week. I am doing the SCD with the GASPS.Now I am looking to add the Boswellia and Curcumin. Your information is V E R Y helpful!!!! Without your blog I would have been lost. I am very weak and can’t function.
Thanks again, Rivi
Rivi, I hope you start to feel better soon. Please keep me posted.
Hi Alan,
Do you have an opinion about Jordan Rubins “restroying your digestive health” or “the makers diet” I’m feeling like I am on information overload, trying to figure out which path, or diet to take.
Jordan Rubins basic premise is on target – eliminate grains, legumes and dairy and add in probiotics. But his credentials are suspect, he cloaks his plan in religion, and he sells a bunch of expensive and questionable supplements…and there is no reason at all to avoid pork. Pastured bacon, short ribs, and a slow cooked pork roast are just too good to pass up! I’d pick between SCD, GAPS and Robb Wolf’s Paleo (I’m partial to evolution over religion when it comes to biology) using his autoimmune protocol. Or mix & match what you like from the 3.
Venus –
I actually just spent the last 3 weeks on Jordan Rubins Guts & Glory program. It’s TOUGH to stick to but I’m glad I tried it. I didn’t see any change in symptoms so am off to try something new. Haven’t figured out what that might be but the few things I will keep from his program are:
Probiotics and lots of them!
Goats milk & goats milk yogurt (easier to digest for those of us with troubles)
Heavy duty Vit D supplemements
Natural Anti-inflammatory (boswellia, etc)
Digestive Enzymes
Based on the research I’ve done these are critical to most programs. My next step is to try other diets and/or food elimination programs. I was on mesalmines and they didn’t work so they want to bump me to 6MP. Not happy with the list of possible side effects so plan to do everything else first!
Well the pork thing is pretty important if your Jewish. Its not kosher. Although Rubin might be a Jew for Jesus which tend to be shifty.
I’m Jewish, but not kosher 🙂
Well for more observant Jews.
Thought you would find this interesting — Pork: Did Leviticus 11:7 Have It Right?
thanks for the quick reply!!!!! I am struggling because my crohns is very active and my last colonoscopy was not very positive, active disease, bleeding and narrowing. My cimzia apparently was not working, anyway….you remarked on a post i had in regards to tysabri, and i am grateful you did, it led me here and all this great info. Not all new to me, I have been gluten and dairy free for several years ON and OFF!!!! but the information about LDN was so intriguing, I did take it to my doctors appt. and naturally he blew it off and said NO! I am waiting to go see a second opinion at :U of M, but am quite frankly anticipating the same response. I saw that you can get it without a script, but honestly I am nervous about that….not being under a doctors care.
I use NATURE SUNSHINE supplements and vitamins (opinion????) and am waiting for my scd book. The healing broth has been made, but i havent solely done the intro diet, I have been eating “legal” food, and the broth.
3 years ago my son, then 9 was diagnosed with crohns, (boy did I hate that day) and truly he has inspired me to be as healthy as I can, because I make him be as healthy as he can. But he is on meds, and doing well…growing, which was our biggest worry, if you lose those growing years, you never get them back, as you know!!! anyway, I am grateful that your “comment” has directed my path, and I truly hope my sons life is more hopeful than the way i feel right now, I dont let him see me sweat though, I stay strong, so he knows this disease wont win. Peace and thank you…youre a good dad!
I am not familiar with Natures Sunshine. Just compare pricing against places like swanson, vitacost and iherb to make sure you are not paying too much. Just eating legal SCD is not a bad idea, but there is real value in the intro diet. It will help you gain control more quickly, learn what trigger foods you have so you can avoid them, and eventually allow you to have more variety. For example, raw veggies may be a problem while you are sick, but fine after some healing. And with LDN, I know it is a bit scary to go it alone – I was scared too – but it is amazingly safe and virtually foolproof. You won’t regret doing it and it may give you courage to transition your son to it. There are plenty of resources online that can help you through this!
what brand of supplements do you use. when i looked up curcumin it said it was made with rice flour???
Here is another brand of the BCM-95 Curcumin without rice but its slightly more expensive per mg. http://www.vitacost.com/Genceutic-Naturals-BCM-95-Curcumin
Hi Alan,
Do you know anything about glutanex or endefen by a company named Metagenex? I was wondering if these would be OK to take. Thanks!
I looked up Metagenics products endefen (which looks like a pre-biotic that feeds beneficial bacteria). Elaine was against pre-biotics so I’d be careful. I found glutagenics which is a mixture of l. glutamine, dgl (licorice) and aloe. Both l. glutamine and dgl are great ideas along with zinc carnosine for healing leaky gut, but I would stay away from aloe unless it is Georges brand. The metagenics product are very expensive. For example, you can get l. glutamine far cheaper from http://www.purbulk.com or http://www.proteinfactory.com or even http://www.swansonvitamins.com
My son is 25 and was diagnosed with Crohn’s in January 2011. He’s been on Remicade (every 8 weeks since July 2011– mostly because he had a severe case of Crohns/Colitis with non-healing Fistulas.) The fistulas are healed, and the crohn’s was under control until the past month or so. Maybe Remicade has lost its effectiveness. Can he start LDN while on Remicade? He’s leary about coming off remicade in case the fistulas come back and then he may not be able to go back to remicade with any success. He hasn’t tried SCD or even changed his diet drastically. He is trying to work with a RD. Thanks for all you do to keep this blog running and your wonderful words of advice and encouragement.
The only thing you really can’t combine LDN with is narcotics. So yes he can take LDN with remicade. I’m certainly not a fan of or expert on remicade but most are not able to stop and re-start it as they build up antibodies against it. And I know it’s hard but diet is really the #1 thing for healing. I’m not sure I’d suggest to anyone to eat a normal/SAD diet and expect LDN alone to be enough. It’s possible. Good luck with the RD…but if they don’t tell him he should go grain, legume and mostly dairy free…be careful. Keep me posted!
I just hope his doctor will prescribe LDN. This doctor hasn’t been too keen on any alternative therapy suggestions. My son just started aloe vera juice about a week ago – even though I had bought it for him months ago. He says that it really seems to be helping, but I don’t think it is the brand you recommended: Georges (distilled?) I didn’t know about your website then. And I think he just started probiotics; which I’m not certain is a good idea; but he just says, “Oh mom, don’t believe everything you read on the internet.”
Thanks again for your time and input. I have shared with my son, and will definitely push for the LDN and at least those diet changes you mentioned.
Elaine was against aloe because it contains polysacharrides which potentially feed pathogenic bacteria. And aloe also contains latex which acts as a laxative. Georges brand removes both. If his doctor won’t prescribe LDN, he can find one that does (email Crystal Nason at angelindisguiseldn@yahoo.com and she will provide a list of prescribing doctors in his area…also check our http://www.ldnscience.org, they have a short list of prescribing doctors.) Also, you can always get naltrexone yourself online from http://www.alldaychemist.com or http://www.unitedpharmacies.com.
He’s right though. Don’t believe everything you read on the internet.
Quick question: I just read this on the LDN website: http://www.lowdosenaltrexone.org/index.htm#How_does_LDN_work_
“4. People who have received organ transplants and who therefore are taking immunosuppressive medication on a permanent basis are cautioned against the use of LDN because it may act to counter the effect of those medications. ”
Since my son is taking Remicade (every 8 weeks) maybe he should hold off on LDN until the Remicade is no longer effective?
My understanding is that LDN works differently. There are a number of people on the LDN boards and Facebook groups that are on one of the biologics and LDN together with good results. I encourage you to ask that question of one of the groups and not just take my word for it. Here are 2 – https://www.facebook.com/groups/GotEndorphins/ & https://www.facebook.com/groups/185159551524199/ in the second group, I’d ask Amy Reynolds (taking both for IBD and regularly corresponds with Dr. Jill Smith who ran the LDN trials https://www.facebook.com/note.php?note_id=192787194089306) and Jayne Crocker (one of the most knowledgeable LDN advocates in the UK who has a correspondence relationship with Dr. Ian Zagon, who is the lead researcher in the world on LDN also at Penn).
I would actually have him start on LDN, and get a good 3 or 4 months therapy on both before stopping remicade.
WOW. You are amazing. How on earth do you keep up with all of this? You’ve given me more information in these 2 or 3 posts than my son’s doctor has given us in nearly a year. It is so frustrating. His doctor says, “Remember, that’s why they call this a PRACTICE.” grrrr.
I will check out these groups right away. THANK you so much!
It’s actually somewhat of a personality flaw. I’ve become somewhat of a fanatic about this stuff. As it turns out, there are a bunch of others advocates around the world and most are very willing to share information. We kind of feed off of each other. I’ve also found that being eclectic helps. This puzzle is not one dimensional. I try to learn from the Paleo crowd and the LDN crowd. There are even a bunch of folks that focus on other autoimmune diseases like autism, MS and Fibro that are amazing resources. And without Google and Facebook, little of this would be possible.
Hi Alan,
I recently discovered your site after doing an LDN search on one of the forums and have been reading everything you have posted here over the last few weeks. I have had Crohn’s for about 10 years but have only recently begun to educate myself again after a long hiatus of semi-blissful ignorance. That said, I’ve realized over the last month or so what an invaluable resource this website is, and how crucial your voice and presence in the community is for the exciting new ways of looking at auto-immune disorders.
Thank you so much!
-Grayson
Thanks for the comment. I hope the information here is helpful.
Alan
My husband was diagnosed with Crohn’s 2 weeks ago and I am overwhelmed and don’t even know where to start with getting him better. There is so much info and I am overwhelmed. How and where should I start. Currently he is on 60mg of pred, lialda and an enema. He just finished cipro and flagyl.
Cari, Sorry to hear about your husbands diagnosis, but now that you know what is going on, you can put together a plan. Of course you can read over the “core strategy” that I put together, but please don’t try to do everything at once. I would start out with the guys at http://www.scdlifestyle.com they have put together a very simple, easy to follow approach to diet along with some great motivation tips. I would have the whole family go on the diet with him so your whole house is safe. My guess is that they didnt test his B12 or D levels. I’d be shocked if he wasn’t low. I’d look into getting them tested and getting him on regular B12 shots, and starting him on D3 (see my post). He should wait until he’s weaned down to about 10mg of prednisone before starting LDN.
Since he just finished a course of antibiotics, it is a good idea to start on a probiotic. That can be as simple as the home-made SCD yogurt. Read through the rest of my site, check out the things I’ve linked to. And please do come back and ask questions. You’ll put together a plan that makes sense for your husband…and he will get his life back.
Wow it looks like I never responded to this, which is weird, besuace I seem to recall doing so! I must not have saved it.At any rate . thanks for the update! Like you, I found the first couple/few months of LDN to be a little bit of a roller coaster, but I’ve definitely stabilized at this point. I’m sleeping well (and falling asleep easily), and my dreams are a lot less crazy now! I’m feeling healthy, and waking up feeling well-rested, both of which are new and welcome experiences for me.Did your son start LDN? How’s it working for him?
Thank you so much for all the information. I started SCD a while ago and it has helped tremendously. It allowed me to have a successful colostomy takedown surgery about 4 weeks ago. My GI doctor wants me to restart Humira but I would prefer to try LDN. Of course he is against it, so until I can find a doctor who will prescribe it, I appreciate the links to the online pharmacies where it is available without a prescription. I read your post about mixing it with 50 ml of distilled water and then starting out with a 1 mg/ml dose each week to build to 4.5 mg. This might sound like a stupid question, but how do I measure out 1 ml? I don’t have a measuring cup that small. And I’m also assuming I drink it, but thought I’d better check. Thanks again for your help.
Carolyn, No dumb questions. I think the way to go is with a measured medical oral syringe – http://www.amazon.com/Monoject-Oral-Medication-Syringe-With/dp/B001AIKUZG/ref=sr_1_1?ie=UTF8&qid=1331839937&sr=8-1 – It does taste terrible, so you can put it in some juice, or just brush your teeth after you swallow it.
Please do watch your inflammation levels though because LDN may take a while to work. Did you work to get your vitamin D levels up as well?
Thank you so much for the reply–I really appreciate it. A medical oral syringe sounds perfect. I also want to thank you for the taste warning so I can prepare myself! 🙂
I was on prescription vitamin D before my surgery. I was taking 50,000 units twice a week because my family doctor had tested it while I was really sick leading up to my colostomy surgery. Not surprisingly, it barely registered any–I think it was at 5. It is now in the 50-60 range. After the prescription was over, she is now having me take 2000 units a day and she is monitoring it and if it drops again, I’ll have to go back on the prescription strength. Based on your research, is 2000 units enough or should I be taking more?
I figured it probably took a while for LDN to work and forgot to ask about that. About how long does it take to start working? I also quickly read some of the other posts about other supplements but haven’t had time to go back and look into that further. Are there other supplements that are helpful?
Thank you for being such a great resource. It really is a shame that healthy alternatives to treating Crohn’s are not more mainstream.
Often prescription vitamin D is D2 the synthetic form that your body doesn’t use as well. You want D3 and the only way to really tell if 2000 is enough is to have your levels checked. 60 is good. 80 would be great. There are tons of other good supplements and you can go crazy & broke taking too many, so you have to prioritize. Boswellia & curcumin, as well as a good probiotic might be next. See the links in the core strategy post. But each helps with a different issue. What issue do you want to focus on?
As for LDN, the impact varies widely. For some the benefits start right away, for others it can take months.
How interesting about prescription Vitamin D. You’d think that a prescription formula and strength would be better than over the counter. But, then again, I guess I shouldn’t be surprised!
I will check out the links in the core strategy post about supplements. I make SCD yogurt for probiotics and haven’t checked out any other forms. My crohn’s usually is active in my small intestine. I’ve had 3 resections and though they had to remove part of my sigmoid colon with my colostomy surgery, my surgeon thinks that it was small bowel driven. I had 3 fistulas and two abcesses that just would not heal. I had three drain tubes in at one time, but then two for 3-1/2 months before it was obvious that I was not going to survive unless they did surgery. So, with that in mind, my biggest problem seems to be bacterial overgrowth. I need to find a way to prevent that and also inflammation from starting. Right now, I am disease free and my crp level is in the lower part of the normal range. Would boswellia & curcumin help keep it in that range or are there different choices that would be better?
Again, I appreciate your help more than I can say. I am on a mission to never again be as sick as I was and it has become apparent to me that I need to be way more proactive in my treatment and look at alternatives to conventional medicine. No prescription has worked– I’ve had allergic reactions, other debilitating side effects or else it just do anything except cost me a fortune. I want to believe that my crohn’s can be managed effectively without destroying my health and bank account completely.
Great that your CRP is low and Boswellia & Curcumin act as antiinflammatories, pain relievers and leaky-gut healers. But they don’t do much for bacterial overgrowth. Things to look at there would be Some combination of antimicrobials – Betaine HCL (increase stomach acid to improve digestion), Lauracidin/Monolaurin (the fatty acids derived from coconut that are powerful antimicrobials), oil of oregano, or colloidal silver. And beneficial bacteria – Mutaflor if you are in Canada/Austrailia or Europe – if not, b. coagulans and s. boulardii…as well as your own fermented veggies or kefir over SCD yogurt.
Thank you for the suggestions. Perhaps a coincidence, but the website scdlifestyle.com just posted an article about Betaine HCL today. I just glanced at it quickly, but it sounds like it would help me a lot. I will also have to check into the other probiotics too–I am grateful for your knowledge and willingness to help others with this disease.
Would you happen to know if Vitamin D3 in liquid form is better absorbed than in tablet form?
I need to purchase some more and saw that it came as a liquid on some of the vitamin websites. It’s more expensive, but if it works better, it might be worth it.
Thank you again.
D wants to be taken with fat. MCT oil is great, olive oil is fine, but I’d avoid soybean oil.
Thanks! As far as the supplements, Boswellia & curcumin, how do you figure out how much to take? I’ve read the information about them and the bottles say to take one capsule daily. I’m not sure if having Crohn’s would change this amount or not.
We do 2 capsules of each per day, so that’s 150mg of Boswellia and 800mg of Curcumin. Here is a study that suggests 250mg of Boswellia (http://arthritis-research.com/content/10/4/R85) And a study that suggests 500mg 2x per day of a combination of the 2 was better that Celebrex – essentially what we do. http://www.europharmausa.com/press-releases/119/july-28-2011-bcm-95-curcumin-and-bospure-boswellia-compared-to-arthritis-drug-/ http://www.europharmausa.com/DBFiles/Documents/89.pdf
Hey Damion, It sucks to have such major sugery but I’m sure you feel so much beettr for it. I’m about to get surgery done for a enterovesical fistula from my crohns. The SCD diet has helped all my crohn’s symptoms but its just the damned fistula that won’t heal.Any advice you can give on recovery would be more then welcome.i believe how you look at a situation is very important. I might be suffering from pains of crohns but I believe I’m much healthier and better for it and in turn my children in the future will be beettr for it as well as others that can learn from my experiences. I believe there is always someone worse off out there (Kony 2012 for example) and appreicate everyday and love life.Theres no point in being depressed about my condition or looking at it with a negative slant. Thats not to say I don’t have my bad days but It only stresses me out more to feel so negative. Onwards and Upwards I say. Stephen
Stephen, I would give LDN a shot, and consider fibrin glue for the fistula.
Thanks for the links. I bought the Life Extension brand of Boswellia and it says they are 100mg capsules, so if I take two, that will be 200mg/day and not 150mg. Is there a different brand whose capsules would be 75mg each.
We still have some of the old version left that was 75mg. We also found vita cost brand that is also 75mg and $10 for 120 capsules.
Thank you–I will check out vitacost. Do you think it’s ok to take two of the 100mg ones or should I just take one per day?
Going with 2 will only hurt your wallet.
Lol…I’ll be switching to vitacost once it’s gone. Thanks for saving me money! 🙂
Just found your blog. Very Interesting. I agree about research piling up making a diet connection with autoimmunity. I share your frustration.
Alan,
Can you pass on your muffin recipe that is dairy-free;grain free;gluten free?Also how is krill oil different than fish oil? And what brand do you recommend?
Well, I don’t have muffin recipe, but I’d bet these are great http://www.thepaleomom.com/2012/02/broccoli-banana-muffins-with-chocolate.html
Krill is in a more bio available phospholipid form…but fish oil is higher in EPA & DHA or at least much cheaper to supplement with. Check out Kirkland fish oil and NOW brand Neptune krill oil or NKO… But there are plenty of good ones. Please keep in mind that it’s more important to minimize your omega 6 intake. Then supplementing with fermented cod liver oil may be your best first step.
Alan,
I had the Pill Camera done. After 4.5 years we now know for sure. It showed ulcers in my small intestine and destroyed villi. Now we await the Promethius blood test. The doc says if it is negative they are still certain I have Crohn’s but would want to send me to Denver to do a biopsy. I have decided that is where I draw the line. I have had so many tests which showed nothing because they could not reach where it was. I have done my research, know my body and symptoms and don’t need to go through that invasive process. The good news is that he is willing to prescribe LDN which I will hopefully start in 3 weeks. He said he wants me to go on something with the LDN. I would like to try the LDN by itself. What are your thoughts on this? i really would rather avoid drugs like Humira and Remicade and so on.
My other question is: Is it safe to use MM for flare ups while using LDN?
I have my diet under control and I get omega 3 from 4 different sources which I rotate every 4 days so I don’t become intolerant of one type because I have 38 food allergies and i am on a strict rotation diet. I am REALLY excited beacuse I have an appointment with a doctor in Santa Fe in Oct who is going to do an initial workup on me so I can start LDA. http://www.drshrader.com/news.htm I know someone with Crohn’s that does this treatment and has been in remission since the 90’s!
Thanks for your help
Great news that your doctor will prescribe LDN. While you can take LDN with mesalamine (I assume that’s what you meant by MM), I’m not sure there is a good reason to take mesalamine if you have crohn’s. Studies show that it does little more than placebo for crohn’s. http://www.ncbi.nlm.nih.gov/pubmed/21154400 If he really wants you to do LDN with another drug, consider Rifaximin. It is an antibiotic that works only in the gut. After your course with Rifaximin you’ll need to re-establish good bacteria, but that should be doable. Here is a recent study on Rifaximin that shows real potential. http://www.ncbi.nlm.nih.gov/pubmed/22155172
And keep us posted of your results LDA. I’m not that familiar with it.
FWIW Terri, my Crohn’s is in full remission right now also, but I’m still tainkg it. The reason for this is that Crohn’s isn’t my only autoimmune issue. I also have psoriasis, and while I haven’t seen a full-blown flare in a while, I do have chronic low-grade symptoms. Between the sniper-type onset of my Crohn’s earlier this year and the resistance of my psoriasis to fully subside, my ND and I thought LDN seemed a reasonable next course of action to try.Also, if you believe the hype, another good reason to take LDN even when IBD is in remission is that it is correlated with a decreased risk of colon cancer, which is always a concern for IBD folks.
I’d also look at Curcumin bcm95 to decrease the risk of colon cancer.
Thank you Alan for the muffin recipe. For some reason, I thought on your handout at Debra’s Natural Gourmet last night…it stated carrot muffin? No worries, I do not bake anyways.
So, regarding Omega 6 foods=I do not use veg oils. My diet is basically lots of veggies, and protein(nuts/seeds/fish with some chix or turkey). I am intolerant to dairy right now. So right now I am at a stand point, with need to increase my immune system…..any other suggestions besides myself adding broth to my diet. I know it is 75% diet(which I am doing), but other ways to get better health. Suggestions welcomed:)
Sorry I didn’t make the connection. There is a link to the muffin recipe in the diet handout </a
Adding broth daily, starting on daily fermented veggies, getting your vitamin D levels up (you can do that with either fermented cod liver oil or a combo of D3 & K2)
And as you can tell, I’m a big fan of adding LDN. It’s not a miracle cure, but it just makes everything easier.
Damion LDN almost 4 mos for me. Went back to 2.0 dose from 3mg and like it. I am exenirpncieg perfect poops more consistently, i.e. even if I eat something SCD that I am usually sensitive to that causes mucus or change in BMs. Had one coffee/dairy drink off diet (dairy big no no for me) and did great with little notice. Still get gas/air if something SCD bugs me but perfect poops reign. Son 4 wks into LDN and no problems after initial vivid dream phase. Stay tuned! Thanks for the prompt to report update.
Hi Alan,
What I meant by MM is medical marijaina tincture or sublinguals for pain if I have a flare while on LDN. I know they say you can’t take certain drugs with it. He has not prescribed any other meds yet. I would like to try the LDN by itself. Do you think it is possible to work alone with diet and probiotics
I will look at the Rifaximin link.
Thanks Alan!
Julie
I don’t have any experience with MM, but you can combine it with LDN. The drugs to avoid on LDN are narcotics…and most say prednisone above 10mg. And of course, you can do very well on diet, probiotics and LDN without the need for any other drugs. That is essentially what we are doing without any issues for the last 2 years.
My only thought about Rifaximin was around your doctors insistance to not use LDN alone. If you do have candida combining LDN with Rifaximin would be a good idea. One thing to look out for when starting LDN is to check for candida first. Rifaximin won’t help with Candida, you would need an anti fungal. S. boulardii or lauricidin would help.
I will be retested for candida next week. I did have it and pretty severe which is no surprise. Hopefully it is gone. Why would it be a good idea Alan? Thank you for your assistance. I would like to have some of this stuff figured out before I see the GI doc. Does Rifazimin help zap Candida?
Many that take LDN and have candida find that their symptoms get worse. Betaine hcl, s. boulardii and lauricidin can be taken along with LDN to help get around that. See my correction below. Rifaximin will not likely help with candida.
Thanks Alan. I wonder why symptoms get worse. I am so overwelmed with info. If my Candida is cronic the LDA therapy will help that. I believe my problems are because I was on an antobiotic EVERY day from age 4-14 due to kidney reflux which I grew out of. Those ten years are crucial for establishing gut flora and mine probably NEVER had a chance. I have been really didligent about probiotics and lucky for me the CDSA 2 shows healthy amounts of lactobacillus however low levels of bifidobacterium which I am taking now with the other. I would love to take S.Boulardi but since I am highly allergic to both types of yeast and it is a yeast I have been hesitant.
S. Boulardii is a beneficial yeast though. Let me know how it goes!
What is CDSA 2?
What is the best probiotic out there?
And lastly, what is the benefit with drinking homemade broth?
-Its the Complete Digestive Stool Analysis – http://healthscopepathology.com.au/pdf/fp_testInfo/CDSA_Levels-1.pdf
-Mutaflor…but you can’t get it in the US because the FDA can’t tell the difference between good and bad eColi. Others that have studies that show it works for IBD are S. Boulardii, VSL#3, and B. Coagulans, but there are other good ones. Its great if you can eat your own fermented veggies or homemade 24 hour yogurt.
-Bone Broth is wonderful healing stuff. Even better if you make it with marrow bones too. Here is how to make it http://www.eat-real-food-paleodietitian.com/gut-healing-bone-broth.html and a great article on why its so important – http://www.chesapeakegardens.com/articles/Kaayla.Daniel.gelatin%5B1%5D.pdf Basically, bone broth contains just the right proteins that help heal the gut lining.
Thank you for the information.
I have the genetic form of celiac disase, and have been told I have SIBO. I eat mostly veggies according to SCD/GAPS, and some fish. But do not do dairy, due to intolerance. I do kimchi periodically. But despite this, I still do not feel good….and the medical folks are unsure why. I will start the bone broth again.
Any insight with what I stated?
All Celiac is genetic. Unfortunately, many with Celiac don’t completely heal with diet alone. Bone Broth is a great first step – as well as a regular probiotic (s. boulardii and/or fermented veggies). I would also add LDN and bring my vitamin D levels up. One way to do that is with Fermented Cod Liver Oil & Butter Oil Start there, and see how it goes.
The CDSA is the only test that showed I had levels of inflamation. This test made my integrative MD concerned and he helped me fight my insurance company to cover the pill camera which showed Crohn’s in my small intestine that other tests could not pick up. Sadly most conventional MD’s have NO clue what a CDSA is!
I am attaching this link below. This woman has helped me tremendously. I am going to meet with the doctor she recommends that saved her in Oct. I highly recommend you read her story and battle with Crohns and get her book.
http://www.food-allergy.org/crohns.html
I hope and pray every day that I get better. I see there are 2 different products-Fermented Cod Liver Oil and then Fermented Cod Liver Oil and Butter Oil,,,,,..what is the difference? and Which is better.
Also, tell me more about LDN…side effects…I am leary of taking drugs, and unsure my gastrointestinologist will approve?
The version with the butter oil adds vitamin k2 which works well together with the vitamin d in the FCLO. LDN is amazingly safe – it has no side effects at all once you get past the first week of adjustment. Most have some type of sleep issues – either feeling groggy for a day or so, or having vivid dreams. After that, the most common side effect is that you may never get a cold. LDN acts as a powerful anti-inflammatory and helps your immune system function properly. Check out the clinical trial results in the links section. 89% of those in the trial saw benefit from LDN. Combined with SCD/GAPS, you should do great with it. Show the study to your GI. Suggest that he contact Dr. Jill Smith at Penn State http://pennstatehershey.org/findaprovider/provider/359 She will consult with your doctor.
If your doctor won’t prescribe LDN you should either find a doctor that will – and I can help you find one – or just buy naltrexone yourself. You can get a years supply from http://www.alldaychemist.com for about $100.
Hi Alan,
I got my prescrip for LDN. I have a couple of questions before I fill it. 1st off I am going to be sure the Candida is wiped out which I hope.
When compounded what do you recommend the Naltrexone be mixed with? I have read lactose is usually used but I have also heard they can use a vegetable filler?
Is it important if the Naltrexone is time released or not?
Does it matter what time of day you take it?
my integrative doc prescribed 3 capsules at 1.5mg= 4.5mg but wants me to start slow meaning one at a time.
thanks Alan!
Julie
Great! I would get LDN from Skips Pharmacy in Boca – http://www.skipspharmacy.com. We use avicel as the filler, and that is the standard from Skips. In order to work properly, Naltrexone needs to get into your system as quickly as possible – so “not time released”. Most experts still think its best to take Naltrexone right before bedtime to take advantage of your natural cycles for endorphin production. Taken at bedtime, it blocks your opioid receptors for about 4 hours, just about right to trick your body into producing extra endorphins towards the end of your sleep cycle. Starting at 1.5 is a good idea, it will take longer to work, but it will reduce the side effects that many get in the first week. Take the 1.5 for a week – or until you have no more initial side effects, then go up to 3 for a week or so, then see how you do at 4.5.
As for candida, you could also start taking LDN along with Lauricidin, Betain hcl, and s. boulardii if you are concerned about candida.
Hope this helps!
Thanks Alan! This does help.
I see my G.I. doc tomorrow. My promethius blood test came back inconclusive and he is positive regardless. He recommends going to the university for biopsy but is respectful that I don’t want to go that route because of how invasive it is. The Crohn’s is in my small intestines. I really hope the LDN works for cases like mine. Based on what I have seen the studies talk about it working for Crohn’s in the colon.
He is going to talk about meds. Did I mention I am scared? The meds they prescribe for this disease scare me because I already have Selective IgA Deficiency on top of Crohn’s. My immune system is already compromised from that.
I have been doing L-Glutamine for over a year, rotation diet ans redo my immunolabs test every 10 months and am pretty much grain free except a little brown rice here and there. I eat lots of fish, sardines, poultry, vegetables and I soak all my nuts now for 24 hours before making hot cereal out of them. I do not consume any yeast, cow dairy or refined sugar. Goat or sheep yogurt 1-2 times a week is good. I take good probiotics however curious if I should try VSL.
Alan you are incredible resource. Thank you for being here!
Julie
Julie, I hope that LDN works for you as well…it should. If you are on LDN, good with your diet, and get your vitamin D levels up, you should not need traditional immune suppression drugs. I would go easy on the nuts – even soaked which helps reduce phytic acid that hinders mineral intake – because of their pro-inflammatory omega 6 fat profile. Nuts should be snacks rather than meals.
You can certainly try VSL#3 and see how you do with it. It is expensive but recent studies show that it can really help UC – http://www.ncbi.nlm.nih.gov/pubmed?term=22363592
On the Selective IgA Deficiency, have you looked into IVIG? It is expensive and there are risks, but it’s supposed to really help with Crohn’s as well. http://en.wikipedia.org/wiki/Intravenous_immunoglobulin
I met with my GI doc today and we looked at the pill camera pictures. There are ulcers, destroyed villi and narrowing in a couple of sections of my small intestines. He told me my case was mild! I was so shocked and excited to hear this because in 4 1/2 years I have had SO many flare ups. I was sure I was going to hear my case was moderate to severe. He feels I am doing better then any of his Crohn’s patients! When I asked him if his other Crohn’s patients were strict about thier diet he said that they were not. I believe all the hard work I have done has served me well and will keep on this path. It must be the sardines;)
He agreed with me and also said I have to be extremely careful about the medicines used because I am an unusual case having Selective IgA Deficiency meaning my immune system is already prone to infections because I lack IgA and most Crohn’s meds suppress your immune system. He agreed to the path I am going to take with the Low Dose Naltrexone and seeing the doctor in Santa Fe.
Julie
Great news. Hopefully you’ll continue to make progress with LDN. Keep me posted!
Alan,
What are your thoughts on evening primrose oil? I am a bit confused about it. I rotate my oils because I am on a strict rotation diet. Cod liver oil day 1, Sardine mackrel anchovy oil day 2, flaxseed oil day 3, and evening primrose oil day 4. I know the other 3 are good omega 3 but I am mixed up about the Evening primrose and wonder if I should be taking something else instead of it that day.
Julie
I understand that EPO is great for acne, so if that’s a problem it’s fine. Otherwise you may want to go with krill oil, switch to fermented cod liver oil & butter oil blend, and drop the flax oil.
Hi,
I’m really impressed with this site and all the information you are spreading!
I’m a 22 year old male. I got diagnosed with mild Crohn’s disease 4 weeks ago. I’m not sure what triggered the disease in me, but asides from genetic predisposition I’m suspicious that Accutane treatment for acne and campylobacter food poisoning were lead causes.
I found hope in nutrition potentially being a cure for this disease – and since my disease is labeled as mild, I figured my chances were good. I stopped pentasa after consulting with my G.I. and started the paleo autoimmune protocol, slowly introducing one food at a time (similar, but even more restricted than SCD).
It’s been 4 weeks now and my bowel movements have gone from 4-5 relatively loose to 1-2 solid on a good day (I would say almost normal digestion). On the other hand, I’m having low-grad fevers several times every day and for the first time ever I’m having abdominal pain from this disease.
Since my bowel movements and stool quality have improved I hope that the gut lining is getting time to heal and that the symptoms I’m having probably will fade away if I give it enough time?
I scheduled another appointment with my G.I. ten days from now – should I ask to get on any drugs to reduce inflammation and hopefully relieve me of the fevers? (exams are coming up and the fevers will no doubt affect my results a lot)
If there’s anything that you think might help me please let me know.
All the best
-Mathias
Mathias, Glad to see that you are on a good path. What you are experiencing could be a Herx effect or die off https://chronicillnessrecovery.org/index.php?option=com_content&view=article&id=161
As for additional things to do to speed your healing: LDN is the key drug to be on. Let me know if you need help getting started. Add a good probiotic like s. boulardii or b. coagulans or just fermented foods. Get your vitamin d levels checked and supplement to get them near 80. And of course there is curcumin & boswellia.
I just wish my 18 year old daughter could be as focused as you are…
Keep me posted!
Alan
I’m looking to find out more about how I can speed up the healing. The general misery I’m feeling right now every day makes it hard for me to study and the exams are getting closer. I have a doctor’s appointment in a week and want to ask him about medication.
Do you think LDN could get away those low-grade fevers I’m having pretty quickly (like I’m imagining steroids could) or is it more of a long-term thing?
Thanks again Alan
-Mathias
Having a doctors opinion on the fevers is a good idea. But I should have also suggested B12 injections. You may find you have more energy, general misery lifting and the ability to focus better by the next day. My daughter gets B12 shots every 3 weeks and they make a big difference. I would stay away from steriods if at all possible, but start with LDN as soon as possible.
Tested vitamin D and CRP today. Will take a few days before I get the results.
Looked for curcumin and bosweilla today, but the only thing I found was this:
http://www.solgar.com/SolgarProducts/Standardized-Turmeric-Root-Extract-Vegetable-Capsules.htm
How does it look? The ingredients looks SCD legal to me atleast?
Turmeric is a fine spice, but if you want the concentrated version that will help reduce inflammation you want the most bioavailable form of Curcumin. You want either Meriva or BCM95 formulation. The cheapest I’ve found is at the link below.
Boswellia is similar, you really want the most potent version available in AKBA or 5Loxin formulation. The cheapest I’ve found is in the link below. Technically it is not SCD legal. You can get a cheaper/legal, powdered version (not as convenient) from http://www.beyondacentury.com called super boswellia.
Boswellia –
Curcumin
Thanks Alan!
Hi again Alan,
Think I’m starting to get better. Got my vitamin D (123 nmol/L) and CRP (<1mg/nmol) levels back.
I think the vitamin D levels translates to 49.2 ng/ml so I think I will up my daily dosage from 2000 IU to 6000 IU – what do you think?
49 is not that bad, but bringing it up to around 80 would be better. Going to 6,000 would be conservative. It took going to 10,000 per day to get my daughter up there. How we’re your CRP & ESR levels?
Hi Crohnsdad, I just wanted to add that I’m also 22-male, diagnosed in september with severe crohns-colitis (both), worked closely with naturopathic doctor & medical doctor, have since stopped prednisone after only 4 months (thanks to the SCD diet!). I abandoned the diet in march, am eating as healthy/organic/naturally as possible +Gluten free, and am now suspecting gluten to be a big culprit (relatives have celiac in my family). My supplements are Slippery Elm Bark, Licorice Root, L-Glutamine, Liquid Fish Oil, VSL#3 Probiotics, Vitamin D, and Boswellia and Multivitamins. Trying to get off Asacol.
What are your thoughts on Asacol? -helpful? a waste of money? and any of the supplements I listed, are they beneficial to you and your kid?
Thank you again for showing up on the web, a very pro-active father and valuable web source! All the best,
Tommy, Thanks for the comments. I like your blog… I would encourage you to go back to SCD, but if you can’t, check out the perfect health diet it allows white rice, tubers and cocoa. As for your supplements, they look good. For boswellia, make sure you are taking it as 5Loxin (other forms are pretty weak), and I’d add Curcumin in BCM95 form (Even better than boswellia, and great combined) Of course, adding LDN would be a good idea as well.
On asacol, studies show that its not effective for crohn’s. Its no more effective than placebo, and just not worth the side-effects or the cost. Maybe that’s why its not FDA approved for Crohn’s – they can’t prove that it works. http://www.ncbi.nlm.nih.gov/pubmed/21407190 & http://www.ncbi.nlm.nih.gov/pubmed/20717106 & http://www.ncbi.nlm.nih.gov/pubmed/19118966
Please do keep me posted! Best, Alan
Do you have info on how LDN might help fistula? We are about to ask doctor for RX and I can’t find much to support the fistula piece. We are afraid that Remicade may be the only non-surgical option. What is fibrin glue. The seton plug helps some, but nothing seems to heal a fistula or stop from recurring.
Thanks!
Jamie, there is actually a quote in the LDN study that mentions that 2 patients with fistula saw healing during the 12 week trial. I’m not sure I’d rely on LDN alone though. Fibrin Glue seems to be getting mixed reviews even though it seems to be low risk. In the US its not very popular. Seems that they like it in Europe though Fibrin glue is effective healing perianal fistulas in patients with Crohn’s disease.
I’ve also been reading Dr. Brasco who is high on anti-MAP antibiotic cocktail for fistula http://www.ncbi.nlm.nih.gov/pubmed?term=17369114 He also has some great things to say about rifaximin which should have fewer side effects.
I had an acupunture appointment yesterday during a flare up. i think it is time to find someone new. He told me he wanted to pull me off of ALL animal products. The only animal products I eat are lots of fish some chicken and turkey and a little goat or sheep yogurt. When His reasoning was my body was to acidic. I ALWAYS eat my meat with vegetables to balance it out and NEVER eat anything from a condiment jar or processed. I have a chart of acidic foods vs. alkali foods and follow it. He wanted me to eat more starches. When I told him at this point in time I could not give up animal protien because I have 38 food sensitivities he was rather disrespectful. not only do I need to follow a mostly paleo diet because of the Crohn’s but I also need as much variety as possible to avoid a sensitivity against a food I am eating which has already happend once. I don’t believe in my case what he is saying is a good idea. I do give my system a rest once a week and juice fresh vegetables and fruits.
Right now I don’t know what is going on I am on day 2 of a flare up however no vomiting which is good just bad pain and nausea and cannot do anything but liquids. I did increse my LDN on Sunday night to 3mg. The next evening is when I started to not feel good. I am hoping I am just reacting to a food I ate. I had some strawberries, kiwi and rasperries this weekend which could have done it.
Julie, Sorry to hear about your setback. I’m a fan of acupuncture. It feels great and should work well with LDN. Acupuncture increases your endorphin production. There is some debate about just how important the acid/alkaline balance in diet really is. So please don’t focus on it too much. If you look at the autoimmune protocol for Paleo, or GAPS it is mostly animal products. Dr. Natasha has patients with multiple food sensitivities – the tough cases – on animal products only. She is a bit colorful, but check out this interview – http://www.youtube.com/watch?v=DG0HldVSkzU
In terms of food choices though, poultry should be much lower on your list. Poultry is very high in pro-inflammatory omega 6 fats. Fish is great, but you should consider adding red meat and organ meats back in. I’ve become a huge fan of The Paleo Mom. Here is a recent post she did about prioritizing protein sources. http://www.thepaleomom.com/2012/06/if-i-cant-always-afford-grass-fed-beef.html
While not feeling well, skip the berries, and do more bone broth or collagen hydrolysate.
Hi there,
I am a fan of it too and will continue but just with someone else who is more respectful of my dietary needs. I have read Natasha’s book and always resort back to it. I started doing a lot better when I ate more animal products and vegetables and less grain. Grain does not agree with me except for a little rice here and there. I did try introducing red meat which I have never been a fan of but it really hurts my gut so I steer away from that.
I was doing so well. That is why I had some berries and then whamo. I think that could have set me off. I hope it is not the LDN. Even after all the treatments of nystatin and diflucan my candida is still high. The Dr. in Santa Fe I am seeing in Oct will be able to help me with this if I am a candidate for LDA. I just hope the LDN won’t be a problem for me. I wish I could take the S. Boulardi but I can’t. I am allerigic to brewers and bakers yeast. Natasha recommends NOT to take S. Boulardi if you have allergy to the others because even though it is a good yeast it is close in relation to the others. I will keep up the fight and most of all keep you posted on my visit with dr. Shrader in Santa fe. Sounds promising
I will check out the links you sent me.
The guys at http://www.scdlifestyle.com just had a great post on low stomach acid and its impact on health. One thing they talk about is this being a key reason that some have problems with eating meat. Check out their post! http://scdlifestyle.com/2012/06/hypochlorhydria-3-common-signs-of-low-stomach-acid/
Hi Alan,
Could you touch upon Omega 6 foods again? I am following SCD/GAPs diet……….mostly eating low carbs veggies………as fruits do not agree with me. I know I need protein…….as in the past I used beans/rice/tempeh………..I now use fish, but crave nuts/seeds, which I do after soaking and dehydrating. Most animal products I do not like, but have tried turkey/chic and eggs in the past. Is hemp seed ok to have? I wish I could find more variety, as well as a source of tolerable proteint? Could my ongoing nausea and lack of glow be from too much Omega 6?
Cynthia, While you need omega 6 fats, your goal is to have a better balance of omega 3 & 6. The best source of omega 3’s are from fatty fish and pastured animals/eggs. Hemp seed, like all other non-animal source of omega 3 have a type of omega 3 that your body needs to convert to EPA. Humans do that poorly, especially when our diets are high in omega 6. It’s very important to limit your intake of omega 6 which are mostly grain/seed/nut sources of fat and unfortunately poultry is high in omega 6. Eating too much omega 6 is pro-inflammatory and actually increases intestinal permeability.
On the protein front, fish is great, but you really want to stick to animal sources as your staple. Start with bone broth and or collagen (http://greatlakesgelatin.com/storefront/) its a virtually tasteless form of gut healing protein that you can add to anything. The gelatin is great in recipes, and the hydrolysate just dissolves and can be mixed into anything. Easy. Also, check out the article from http://www.scdlifestyle.com on low stomach acid, that may be the answer you are looking for to get your glow back…and make choosing meat more appealing.
Thank you
I just found your blog and it’s awesome. Send me an email if you’d like to write a guest post for me or collaborate on a post together: thepaleomommy@gmail.com
Sarah, I’ve been following your blog for a while and have found it to be one of the clearest and best paleo blogs around. Then I read your transformation post this morning and WOW. http://www.thepaleomom.com/2012/06/my-transformation.html You are an inspiration. I’m flattered and honored by your offer to work together. I’m not sure on what yet, but would love to discuss it.
Best,
Alan
I’m so happy I told Sarah you mentioned her blog in one of your responses. Your blog and hers are my two favorites and you two collaborating together is SO cool to me!
Thanks again for your help in locating LDN and the other supplements. I’ve been doing that and following the Paleo AI protocol for a couple of weeks now and have been feeling really good. I haven’t been able to stop Humira yet but I’m hoping it’s possible in the near future. Thank you for everything you do!
Carolyn, Thanks for making the connection. And I’m glad you are headed in the right direction. Its interesting that there are many advocates for LDN, or Paleo/SCD diet, but few that combine them with supplements/probiotics. Unfortunately for many, they need more than just one dimension. I hope you can stop humira at some point soon.
Hey again,
Thanks for the advice you’ve given so far. Very helpful!
I was wondering what your take on regarding ‘intestinal permeability in Crohn’s disease’ – do you think the condition causes increased intestinal permability, or is this something that happens before the symptoms starts appearing?
I’ve got a familiy history with autoimmune diseases – my brother has psoriasis, grandmother has arthritis, one cousin with type 1 diabetes and another one that has a problem with wheat. I had eczema when I was a kid. I’m starting to lean against that there is a common denominator in these diseases in my familiy.
Am I right that Dr. Thomas O’Bryan and Dr. Natasha Campbell-McBride both advocates that all auto-immune disease is related to leaky gut?
Great question!
The latest research by Alessio Fasano paints the picture that all autoimmune diseases have a genetic pre-disposition, increased intestinal permeability and an environmental trigger at their core. Increased intestinal permeability and leaky gut are the same thing. Dr. Natasha focuses on gut flora balance and O’Bryan on gluten, but they are essentially in agreement and talking about the same thing. The gut flora is an integral part of the “intestinal barrier function” that Fasano talks about. So Crohn’s psoriasis, arthritis, type 1 diabetes and eczema all share a genetic pre-disposition, increased intestinal permeability (eg. low vitamin d, stress, sleep deprivation) and an environmental trigger (eg. gluten, peanut lectins, bacteria). The genes may be different, and the specific environmental triggers may vary a bit, but the process is the same. And the healing process/protocol is also essentially the same.
Keep in mind that the possibility of healing is not the same for all conditions. For example, type 1 diabetics may never be able to get function back after the initial damage is done. But for most autoimmune diseases, healing can happen once the environmental triggers are removed, and intestinal permeability is reduced.
What’s your take on treating leaky gut/intestinal permeability/a flare initially with steroids and then tapering off to no-meds while doing the diet as opposed to only the diet?
Because of their nasty long-term side effects, you really should avoid prednisone if at all possible. But prednisone does work to rapidly reduce inflammation. I guess it’s a judgement call that depends on how sick you are. I would try a liquid diet (collagen/bone broth, bovine protein, coconut oil) the core supplements, and LDN of course before prednisone.
Thanks for the fast comment!
My CRP a week back showed no inflammation, so I guess things are improving.
It’s not that I’m suffering badly, but it’s been two months on strict scd/paleo now, and I would’ve thought my low-grade fevers/general feeling of misery that comes and goes several times a day should’ve improved by now. Maybe it has – I guess monitoring slow progress over this long feels liking nothing is happening.
I’ve been thinking about starting the GAPS-diet from square one with an emphasis on fermented foods and a good probiotic:
http://www.gapsdiet.com/Bio-Kult_Probiotic.html
Other than 3 capsules of Lactobacillus Acidophilus a day I haven’t really looked good enough at the whole good/bad-bacetria aspect.
And since I’ve gotten more acne and a rash on my forehead lately, maybe this is where my root cause is.
What do you think?
Thanks again!! Much appreciated!
If your CRP shows normal, I’d doubt prednisone would help. And that is a very good sign. I really can’t say what is causing your low grade fever. While I’m a GAPS fan, a doctors opinion on the fever would make sense. While their treatment strategies are terrible, sometimes they are really good at diagnosis.
And also worth mentioning is my suspected trigger:
3 courses of antibiotics to treat campylobacter food poisoning just a few months before diagnosis.
That’s a possible trigger, but who really knows.
Hi Alan,
So I have been on full dose of LDN for 7 days. How long before it starts to work? I had a bad flare up this past Saturday which was discouraging but maybe I have not been on it long enough. Also I have read studies about LDN helping Crohn’s in the colon but have you read any studies at all about it helping Crohn’s in the small intestine? According to the pill cam my Crohn’s is mild in my small intestines with some narrowing, ulceration and destroyed villi. The Colonoscopy was clear 3 years ago. Just curious about LDN and cases of Crohn’s in the small bowel.
Hope all is well,
Julie
It’s really hard to tell how long it takes for LDN to help. It’s all over the place. Give it time. And yes, it should help all over including the small intestine.
To Alan’s family: I’m so sorry to hear about the loss of Alan. My daughter is 21 and was diagnosed with Crohn’s 2 years ago. None of the traditional therapies worked for her. Alan provided us with options and answers when we ran out of traditional ones. I am so thankful for his diligent work to inform others. It was a God send for us. He will be missed and has impacted more people than you will ever know.
Hi. I’m sorry for your loss. I don’t know if you will find this useful, but i saw a study on nutritionfacts.org about treating crohns disease with a semi-vegetarian diet. It looks very promising. http://nutritionfacts.org/video/achieving-remission-of-crohns-disease/
I’m not saying you should give up meat (This does seem to be a meat loving blog), but you might be interested nonetheless.
– Shane
Just found your blog,I have been diagnosed with crohns disease, I am taking metamucil am and pm and also take belladonna for years ,as I have had IBS for 45 years, In October started all the tests and the camera found it in my small intestine, my symptons are light headedness, anemia,and blood pressure all over the place. I am now on iron,blood pressure meds,I would like to control it by diet.from what i have read there is no cure…is that true?I am 77….thanks BJ
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