3

votes

Autoimmune Protocol Questions

Answered on August 19, 2014
Created November 06, 2012 at 8:08 PM

I was wanting to know if anyone has any advice that they have from personal experience and/or from a specialist regarding crohn's etc. as far as diet goes, I am so desperate for help! I recently sat down with a gastroenterologist about my symptoms ( distended stomach, pain, bloating, bloody mucous in stool, fatigue and seizure like ailments when I fall asleep after eating (more fatigue). He just suggested a endoscopy and possibly a colonoscopy to see what's going on. I asked him if he ever suggests a paleo approach to help with symptoms and not surprisingly he said no and gave me a handful of acid reflux pills... I don't have insurance so they won't see me & I'm so frustrated with how horrible I feel. I did try a paleo approach months ago & it worked well but I fell off the wagon and trying to get back to that point.. The problem is I feel like something is causing issues and I can't seem to get rid of this puffiness & pain :(. I avoid grains currently except for plant based raw proteins ( sunwarrior, vega one) any help would be appreciated... I'm 5'1 and about 120 lbs if that's necessary... I'd really like to lose body fat & my inflammation for good!

5e92edc5a180787a60a252a8232006e9

(345)

on November 07, 2012
at 10:11 PM

You might try day-time dosing if sleeping was the issue. There is an endorphin rush during the day aroudn 11am. This goes against the Bihari protocol but there are plenty who're successful with daytime dosing. Also, start at 0.5mg, work up real slow and stay at the same dose until you have no side effects. Get 50mg tablets from United Pharmacies or All Day Chemist and then dilute one in 200ml distilled water. I've talked to enough people to realize that doses are very individual: most people with MS don't need any more than 3mg. 4.5mg is very strong.

089dd41b18fbb95ebb5347cded708d98

(5635)

on November 07, 2012
at 03:37 PM

my dosing started at 1.5 mg for two week and i kept going up .5 mg at two week intervals. sleeping was pretty impossible for me while i was on it the first month... so i doubt i'd try it again. i asked 5 different doctors to prescribe it for me and so far, nobody. it's just more hassle for very little benefit. i don't think immunomodulators should be used anyway since it's the gut that's the problem.

194d8e8140425057fe06202e1e5822a7

(3979)

on November 07, 2012
at 08:06 AM

MDA has a bit on LDN. But he says it's an antibiotic? Is this bad?

5e92edc5a180787a60a252a8232006e9

(345)

on November 07, 2012
at 06:43 AM

Jackie, just curious, how high were your Sjogren antibodies? Were they SSA or SSB? And how high are they now on how much dose of LDN?

5e92edc5a180787a60a252a8232006e9

(345)

on November 07, 2012
at 06:37 AM

Wow, that's what I"m hoping to achieve. I too have Sjogren's and I'm curious what my next blood test will show: my rheumy will go into a shock if I become seronegative! What's funny is after I started LDN at 0.5mg, my hands stopped going numb at night. I thought that was CTS but apparently it was Sjogren's and related tendon/joint-related inflammation. I cannot recommend LDN highly enough. If you're T1.5 or LADA diabetic, you may see autoimmune attacks against pancreatic beta cells cease, and be on your honeymoon indefinitely. This is really the biggest medical discovery since penicillin.

363d0a0277a8b61ada3a24ab3ad85d5a

(4642)

on November 07, 2012
at 06:28 AM

+1 - My doctor in NYC does LDN prescription distance calls and he is covered under many insurance policies. His name is Dr. Borenstein and his website is http://www.davidborensteinmd.com/. He is very easy to talk to, and LDN (plus I think going gluten free) helped drop my lupus and sjogren's antibodies down to nothing over the course of 6-8 months. They weren't very high to begin with, but I was getting hives a lot and having some weird GI issues that were annoying enough to tackle.

5e92edc5a180787a60a252a8232006e9

(345)

on November 07, 2012
at 04:52 AM

Most people who fail on LDN did not dose properly. You may be very sensitive. Also, if you had prior steroid-based therapies or have candidat, it may now work well. But it can work well. I encourage you to give it another try, start at the smallest dose and gradually build up very slowly if you encountered side effects. I've had 70% of my symptoms disappear; the other 30% is still there but not getting worse.

089dd41b18fbb95ebb5347cded708d98

(5635)

on November 07, 2012
at 12:46 AM

yeah, frequency is BMs. i am not sure about the egg issue. i just felt like it was good for me to eliminate all the triggers for 30 days and then i'll try to add one back in at a time. i think you'll just have to decide how strict you should be based on your symptoms.

089dd41b18fbb95ebb5347cded708d98

(5635)

on November 07, 2012
at 12:44 AM

i agree to give LDN a shot. i was on it all summer but it didn't help my UC symptoms. it did take my fevers away though. i diluted 50mg tablets because it's next to impossible to find a doctor who will prescribe it.

D576f84e8964a72d05478e9822b36db1

(20)

on November 06, 2012
at 09:40 PM

Thank you for your response. In reference to frequency do you mean bowel movements? I'm having issues with that...1x per day if I'm lucky but when I would consume corn or other non-paleo food I would have loose, mucousy plus blood in stool :( I know TMI but I'm just desperate for some help. Also I don't think I have any issue with the white of the egg but I noticed if I hardboil them with the yolk I get stomach cramping...would you still suggest cutting eggs out or try to go with the white only?

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5 Answers

1
5e92edc5a180787a60a252a8232006e9

(345)

on November 06, 2012
at 10:19 PM

Paleo will only do so much for autoimmune diseases. GAPS will work somewhat. You need immune modulation, i.e., stop your immune system from attacking the self. Conventional medicine will prescribe drugs that will reduce immune activity. You need low-dose naltrexone (LDN). It's gone through trials at Penn State specifically for IBDs like Crohn's and UC.

You don't need insurance for LDN. It is an off-label use of naltrexone which has been generic for many years. It will cost you $15-30 bux per month. You can get the drug from India sans prescription and dilute it youself, in which case, depending on your dose, it could be as cheap as $6 bux per month. Or get it from compounding pharmacies in the U.S. and Canada with a prescription: about $30 per month. The biggest headache is finding a doctor who'll sponsor you, if you go the compounding pharmacy route.

60-70% remission by some account for those with IBD. Many people with autoimmune issues see a complete halt to AI. Works particularly well for MS, IBD, SLE, CFS, Fibro, etc. May not work for everyone, especially if you've been on steroid-based therapies or have candida. But it's safe and very little side effects, compared to conventional treatments. I would do some homework before trying.

089dd41b18fbb95ebb5347cded708d98

(5635)

on November 07, 2012
at 03:37 PM

my dosing started at 1.5 mg for two week and i kept going up .5 mg at two week intervals. sleeping was pretty impossible for me while i was on it the first month... so i doubt i'd try it again. i asked 5 different doctors to prescribe it for me and so far, nobody. it's just more hassle for very little benefit. i don't think immunomodulators should be used anyway since it's the gut that's the problem.

5e92edc5a180787a60a252a8232006e9

(345)

on November 07, 2012
at 06:43 AM

Jackie, just curious, how high were your Sjogren antibodies? Were they SSA or SSB? And how high are they now on how much dose of LDN?

363d0a0277a8b61ada3a24ab3ad85d5a

(4642)

on November 07, 2012
at 06:28 AM

+1 - My doctor in NYC does LDN prescription distance calls and he is covered under many insurance policies. His name is Dr. Borenstein and his website is http://www.davidborensteinmd.com/. He is very easy to talk to, and LDN (plus I think going gluten free) helped drop my lupus and sjogren's antibodies down to nothing over the course of 6-8 months. They weren't very high to begin with, but I was getting hives a lot and having some weird GI issues that were annoying enough to tackle.

089dd41b18fbb95ebb5347cded708d98

(5635)

on November 07, 2012
at 12:44 AM

i agree to give LDN a shot. i was on it all summer but it didn't help my UC symptoms. it did take my fevers away though. i diluted 50mg tablets because it's next to impossible to find a doctor who will prescribe it.

5e92edc5a180787a60a252a8232006e9

(345)

on November 07, 2012
at 04:52 AM

Most people who fail on LDN did not dose properly. You may be very sensitive. Also, if you had prior steroid-based therapies or have candidat, it may now work well. But it can work well. I encourage you to give it another try, start at the smallest dose and gradually build up very slowly if you encountered side effects. I've had 70% of my symptoms disappear; the other 30% is still there but not getting worse.

5e92edc5a180787a60a252a8232006e9

(345)

on November 07, 2012
at 10:11 PM

You might try day-time dosing if sleeping was the issue. There is an endorphin rush during the day aroudn 11am. This goes against the Bihari protocol but there are plenty who're successful with daytime dosing. Also, start at 0.5mg, work up real slow and stay at the same dose until you have no side effects. Get 50mg tablets from United Pharmacies or All Day Chemist and then dilute one in 200ml distilled water. I've talked to enough people to realize that doses are very individual: most people with MS don't need any more than 3mg. 4.5mg is very strong.

194d8e8140425057fe06202e1e5822a7

(3979)

on November 07, 2012
at 08:06 AM

MDA has a bit on LDN. But he says it's an antibiotic? Is this bad?

5e92edc5a180787a60a252a8232006e9

(345)

on November 07, 2012
at 06:37 AM

Wow, that's what I"m hoping to achieve. I too have Sjogren's and I'm curious what my next blood test will show: my rheumy will go into a shock if I become seronegative! What's funny is after I started LDN at 0.5mg, my hands stopped going numb at night. I thought that was CTS but apparently it was Sjogren's and related tendon/joint-related inflammation. I cannot recommend LDN highly enough. If you're T1.5 or LADA diabetic, you may see autoimmune attacks against pancreatic beta cells cease, and be on your honeymoon indefinitely. This is really the biggest medical discovery since penicillin.

1
089dd41b18fbb95ebb5347cded708d98

(5635)

on November 06, 2012
at 09:24 PM

hey tiffaney. i know how you feel. i have ulcerative colitis and am trying the AI protocol now. i was doing just regular paleo for about 70 days but still had a lot of symptoms. with the AI, i feel less crampy and gassy. i still have a long road of healing ahead of me, but my frequency has gone down from 12-15x a day to about 4-6x a day. i don't live with a heating pad anymore due to all the terrible cramping.

i would give AI a shot. it was hard for me at first to eliminate nightshades because i LOVE tomatoes but you could even give it a shot for a week and see if you notice a difference.

D576f84e8964a72d05478e9822b36db1

(20)

on November 06, 2012
at 09:40 PM

Thank you for your response. In reference to frequency do you mean bowel movements? I'm having issues with that...1x per day if I'm lucky but when I would consume corn or other non-paleo food I would have loose, mucousy plus blood in stool :( I know TMI but I'm just desperate for some help. Also I don't think I have any issue with the white of the egg but I noticed if I hardboil them with the yolk I get stomach cramping...would you still suggest cutting eggs out or try to go with the white only?

089dd41b18fbb95ebb5347cded708d98

(5635)

on November 07, 2012
at 12:46 AM

yeah, frequency is BMs. i am not sure about the egg issue. i just felt like it was good for me to eliminate all the triggers for 30 days and then i'll try to add one back in at a time. i think you'll just have to decide how strict you should be based on your symptoms.

1
E773ca32b29508bae2055579a26afa98

on November 06, 2012
at 08:38 PM

I'd swap the plant based raw proteins for meat. When I experimented with plant based raw proteins the pain and bloating was mind blowing.

0
4d8fd4160293afaeab0b8b2b11315269

on November 07, 2012
at 05:08 AM

Hi Tiffaney, I think you got already some great answer. A place where I found a nice community for people with Crohn is the forum www.crohnsforum.com.

All the best for you,

Eloise

0
A0d4481f4b568e4edc7d8c72102dcfc1

on November 07, 2012
at 02:40 AM

I doubt specialists or any medical practitioners would advocate for the autoimmune protocol. You have to use a trial and error approach to see what your body tolerates. I would start with the GAPS diet using autoimmune protocol guidelines as well as treating FODMAPs and starches as groups for re-introduction. I have Hashimotos and Celiac disease and have been very successful on the autoimmune protocol. I started with the GAPS diet for a couple weeks and slowly introduced foods mega elimination diet style. I have many articles and recipes about it on my site, linked in my profile.

Best of luck to you!

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