5

votes

Autoimmune Protocol and Celiac Disease

Answered on September 12, 2014
Created April 18, 2012 at 1:45 PM

I am a bit confused by Rob's Autoimmune Protocol. My understanding of it was that you were looking to moderate the body's immune response to keep your autoimmune condition in check. I have Celiac Disease and am wondering if the protocol would be of any help to me. I assume not, since my autoimmune response is no longer active with the removal of gluten.

Any insight into this? I have been gluten free for 8 months, but still feel like I am recovering, and thus I am considering if this could help. Symptoms include low energy, mental clarity and alertness issues (better but not as I used to be), low libido, documented low testosterone (about 4 months ago); I may post another question of a "Hack my slow celiac recovery" type. I am also considering that some of these issues could be due to inadvertent caloric restriction simply due to restricted options and college life.

F5a0ddffcf9ef5beca864050f090a790

(15515)

on July 22, 2013
at 06:38 PM

I have a theory now that most gluten-intolerant people have something wrong with their bacteria. If I were you, I would get a genetic culture stool test.

F5a0ddffcf9ef5beca864050f090a790

(15515)

on July 22, 2013
at 06:38 PM

Lily, it turned out I did not have celiac disease! I have giardiasis, low immunity and tons of parasitic/pathogenic bacteria.

67871ef2326f29da48f1522827fc0f80

(704)

on July 22, 2013
at 06:13 PM

Celiac is hereditary, so you've had it longer than 4 years or you're a super-literate toddler! Seriously, I went misdiagnosed for about 40 years (they pinned me with several other things, never thinking to try Celiac, thank goodness it's better-known now!).

19acef0aed67ef8dc1118d8e74edb349

(2954)

on April 13, 2013
at 10:30 PM

A day for me might go... Breakfast: bring two cups of beef stock to a boil, add one sliced onion and cook until almost soft, then add about 10-15 frozen tiny meatballs (made from half liver, half ground beef) Lunch: baked trout, carrot stir fried with broccoli in chicken stock and 3 spoons of bacon grease.

19acef0aed67ef8dc1118d8e74edb349

(2954)

on April 13, 2013
at 10:14 PM

I need to eat the majority of my meat from fat cuts of beef OR liver and heart, and then fat types of fish. Heart makes great stir-fry meat, don't overcook it, it's seriously delicious. I eat chicken (generally fat cuts) once or twice per week. Pork, though it's my favourite meat, I rarely eat anymore unless there's a good deal for picnic roast. It's very important for me to eat large quantities of beef and liver, or I get really weak and tired.

19acef0aed67ef8dc1118d8e74edb349

(2954)

on April 13, 2013
at 10:10 PM

How I drink my bone stock everyday: one cup in my daily soup. One or two cups used as such: to cook my vegetables, to re-heat leftover meat. By the way, all vegetables should be cooked well, never raw. I eat cod liver and egg salad, sneak beef liver in my meatballs, or make oyster soup. I end up eating those sort of things 5 days per week. By the way, one can of cod liver has 11g omega 3, and I eat it in two days. Once you get past the "ick factor" it's very delicious! For vitamin C there's my vegetables and fruits, as well as lemon juice with my fish and seafood.

19acef0aed67ef8dc1118d8e74edb349

(2954)

on April 13, 2013
at 10:03 PM

Hi, I've been there. I found Paleo the same way you did. How I fixed my problems: drink chicken/beef stock twice per day (I sneak it into all my food). Instead of all the veggies Terry Walhs suggests, liver, heart, and oysters are much easier to digest and you don't have to eat ridiculous amounts! I try to eat a little for every breakfast. I react to oils, but coconut oil is ok. Also try bacon grease, lard, beef tallow, chicken/duck fat... atleast 3 spoons with my meals. Hope you feel better soon, like I do :)

7841848bd0c27c64353c583fb7971242

(7275)

on April 22, 2012
at 08:36 PM

College, my g mail handle is thin paper wings without the spaces. I'd definitely be interested in bouncing ideas around. (I'm replying here because I think paleohacks will tell you about it here, but not if I reply in my thread.)

2a17904e3436c49530e5bedaeb06dd5b

(80)

on April 21, 2012
at 09:53 PM

The three of us should exchange emails- stories are so similar and I can give you the details of what my new protocol Is. I stopped prednisone for this gi flare, and all my symptoms cme back the next day. Now they are trying a steroid that works only in the stomach. I would like to give the naturopath's protocol a chance to work, but I am in so much pain!!

97ffbac59e88bdff6495d0a9b6f70ff7

(555)

on April 21, 2012
at 06:43 PM

I had my TSH level checked, and it was normal. But you are saying that this may not be a proper indication of Hasimoto's?

7841848bd0c27c64353c583fb7971242

(7275)

on April 19, 2012
at 12:15 PM

I'm having the same problems. I'm about 10 months into being gluten free but I'm still having brain fog, fatigue, etc. My gastroenterologist didn't have any ideas, except for trace amounts of gluten still in my diet, which seems really unlikely to me. I see an allergist next week: I'm hoping I have unnoticed food allergies that are causing the continued gut irritation. I did an elimination diet for a few months, then added back foods slowly, and didn't notice any issues with eggs, nightshades, or nuts. But I think it's very variable, and worth trying out for yourself.

F5a0ddffcf9ef5beca864050f090a790

(15515)

on April 18, 2012
at 06:48 PM

Also, Aglaee - do you have celiac disease? If you do, how long did it take you to recover? How bad was it?

F5a0ddffcf9ef5beca864050f090a790

(15515)

on April 18, 2012
at 05:29 PM

Oh, and I don't like ghee. You might think it is delicious, but I don't really like it (I also don't like butter). But I have no reaction to both of them, which is good. But I still do not consume them.

F5a0ddffcf9ef5beca864050f090a790

(15515)

on April 18, 2012
at 05:25 PM

Coconut oil... I am not sure. I still have a very weird reaction. With autoimmune better safe than sorry. If in doubt, wait for another 2 months.

F5a0ddffcf9ef5beca864050f090a790

(15515)

on April 18, 2012
at 04:52 PM

0ils are high in omega 6. By the way, oils are not Paleo (I wonder if you knew it). I react to them - when I checked it out, many people with autoimmune diseases react to oils. That's enough for me to know.

E12ead3bf63c94b5b619b03722ef554f

on April 18, 2012
at 03:40 PM

I think that chocolate is a common foods that people with celiac disease / gluten intolerance can also react to!

E12ead3bf63c94b5b619b03722ef554f

on April 18, 2012
at 03:40 PM

Why do you say not any oils? What about coconut oil? In any case, ghee may be a good non-oil dairy-free substitute and it is delicious made with grass-fed butter!

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5 Answers

5
E12ead3bf63c94b5b619b03722ef554f

on April 18, 2012
at 02:20 PM

People with celiac disease definitely react to gluten, but can ALSO react to common other triggers. If you still experience symptoms, you should absolutely try the autoimmune protocol and eliminate all dairy (including butter, but you can do ghee), nuts, eggs and nightshades for at least 4-6 weeks. Then reintroduce these food groups one by one, if you want to add them back, and track your symptoms to determine which one you react to.

Good luck!

3
F5a0ddffcf9ef5beca864050f090a790

(15515)

on April 18, 2012
at 03:09 PM

Hi, I am in the same boat! I am glad you asked that question because it feels better not being alone. I had undiagnosed Celiac disease for four years. All my blood tests came back normal and the doctor could not figure out what was wrong with me. The worst thing was my symptoms were atypical so they could not put two and two together. It got to the point of a horrible fatigue and complete exhaustion (on some days I could not get up). I could not eat anything - I had upset stomach.

My new doctor told me to go gluten-free, but by that time I was in a very bad shape. Most people say they feel better after a week or so after going gluten free. It was not my case. First of all, as soon as I went gluten-free, I became lactose intolerant. Then grain intolerant. Then soy and legume intolerant. For a while all I could it was steamed vegetables and meat. That's how I discovered Paleo.

So I have been gluten-free since September 1st (that's 7 months) and on Paleo since October 22nd.

I went back to my doctor and he said I had to do a gastroscopy. I had bleeding gastric erosion. My doc put me on PPI (Prilosec). At first I was doing better, and then my fatigue went back to the pre-glutened levels. I quit taking the PPI on March 15 (my doc was against it, but... hey, this is my life).

After quitting my meds at first it got slightly worse, but now it is better. I am recovering, but it is taking a long long time. My symptoms are: fatigue, low energy, mental clarity, but they are all mild compared to what it was in the summer.

Now my take this all. Of course, I am not a doctor, but I have read so much about celiac, that I think I know more about it, than my doctor (he is a former surgeon).

So, my villi is in atrophy and I am not getting enough nutrients. As soon as I went gluten free, my body started to attack everything that seems/feels remotely like gluten - dairy, grains, soy, etc. When all this was removed (Paleo) it started to attack itself - the stomach lining, other organs - God only knows what. That's why I developed gastritis - it was an autoimmune response.

Even though I am slowly recovering, it is taking me too long and the recovery process is very uneven. I wish I could speed it up somehow. I am also noticing that certain foods (especially virgin coconut oil and chocolate) give me a sudden burst of energy. I went to a herbalist and am awaiting for my herbs to arrive. He said that my liver is affected and I need to stimulate it (with herbs). I will try that. I am also trying to find a good naturopath.

One of the people here, Nancy, says that making water kefir helped her immensely. I am taking probiotics now (for gut health, since gluten has completely screwed it up). I get a weird reaction from fermented foods so I want to wait a bit before re-introducing them.

Here is my advice (very unprofessional but since doctors don't know anything, this is all I can offer):

  1. Keep eating Paleo (no eggs, no dairy, no nightshades, no nuts). In my case it is also no spices and no citrus fruit.
  2. Think about adding good probiotics or water kefir (as Nancy suggested).
  3. Think about following Terry Wahls guidelines. The difference between Paleo and Terry Wahls is that she prescribes (like medicine) 9 cups of veggies (leafy greens, cabbage, onions, mushrooms, rainbow colors). I cannot eat some of the things she suggests, but I follow her 9 cups per day protocol.
  4. Do not use any oils. I am still looking for a good substitute since we cannot have butter.
  5. If my herbs will help me, I will tell you the source. If not-I will not recommend them.
  6. There is another gluten intolerant Paleohacker here, Ali - she told me she will share what her naturopath will tell her.
  7. Don't give up. Don't ever give up. You are not alone!

F5a0ddffcf9ef5beca864050f090a790

(15515)

on April 18, 2012
at 05:25 PM

Coconut oil... I am not sure. I still have a very weird reaction. With autoimmune better safe than sorry. If in doubt, wait for another 2 months.

F5a0ddffcf9ef5beca864050f090a790

(15515)

on April 18, 2012
at 04:52 PM

0ils are high in omega 6. By the way, oils are not Paleo (I wonder if you knew it). I react to them - when I checked it out, many people with autoimmune diseases react to oils. That's enough for me to know.

E12ead3bf63c94b5b619b03722ef554f

on April 18, 2012
at 03:40 PM

Why do you say not any oils? What about coconut oil? In any case, ghee may be a good non-oil dairy-free substitute and it is delicious made with grass-fed butter!

E12ead3bf63c94b5b619b03722ef554f

on April 18, 2012
at 03:40 PM

I think that chocolate is a common foods that people with celiac disease / gluten intolerance can also react to!

F5a0ddffcf9ef5beca864050f090a790

(15515)

on April 18, 2012
at 05:29 PM

Oh, and I don't like ghee. You might think it is delicious, but I don't really like it (I also don't like butter). But I have no reaction to both of them, which is good. But I still do not consume them.

F5a0ddffcf9ef5beca864050f090a790

(15515)

on April 18, 2012
at 06:48 PM

Also, Aglaee - do you have celiac disease? If you do, how long did it take you to recover? How bad was it?

2a17904e3436c49530e5bedaeb06dd5b

(80)

on April 21, 2012
at 09:53 PM

The three of us should exchange emails- stories are so similar and I can give you the details of what my new protocol Is. I stopped prednisone for this gi flare, and all my symptoms cme back the next day. Now they are trying a steroid that works only in the stomach. I would like to give the naturopath's protocol a chance to work, but I am in so much pain!!

19acef0aed67ef8dc1118d8e74edb349

(2954)

on April 13, 2013
at 10:30 PM

A day for me might go... Breakfast: bring two cups of beef stock to a boil, add one sliced onion and cook until almost soft, then add about 10-15 frozen tiny meatballs (made from half liver, half ground beef) Lunch: baked trout, carrot stir fried with broccoli in chicken stock and 3 spoons of bacon grease.

19acef0aed67ef8dc1118d8e74edb349

(2954)

on April 13, 2013
at 10:10 PM

How I drink my bone stock everyday: one cup in my daily soup. One or two cups used as such: to cook my vegetables, to re-heat leftover meat. By the way, all vegetables should be cooked well, never raw. I eat cod liver and egg salad, sneak beef liver in my meatballs, or make oyster soup. I end up eating those sort of things 5 days per week. By the way, one can of cod liver has 11g omega 3, and I eat it in two days. Once you get past the "ick factor" it's very delicious! For vitamin C there's my vegetables and fruits, as well as lemon juice with my fish and seafood.

19acef0aed67ef8dc1118d8e74edb349

(2954)

on April 13, 2013
at 10:03 PM

Hi, I've been there. I found Paleo the same way you did. How I fixed my problems: drink chicken/beef stock twice per day (I sneak it into all my food). Instead of all the veggies Terry Walhs suggests, liver, heart, and oysters are much easier to digest and you don't have to eat ridiculous amounts! I try to eat a little for every breakfast. I react to oils, but coconut oil is ok. Also try bacon grease, lard, beef tallow, chicken/duck fat... atleast 3 spoons with my meals. Hope you feel better soon, like I do :)

19acef0aed67ef8dc1118d8e74edb349

(2954)

on April 13, 2013
at 10:14 PM

I need to eat the majority of my meat from fat cuts of beef OR liver and heart, and then fat types of fish. Heart makes great stir-fry meat, don't overcook it, it's seriously delicious. I eat chicken (generally fat cuts) once or twice per week. Pork, though it's my favourite meat, I rarely eat anymore unless there's a good deal for picnic roast. It's very important for me to eat large quantities of beef and liver, or I get really weak and tired.

F5a0ddffcf9ef5beca864050f090a790

(15515)

on July 22, 2013
at 06:38 PM

I have a theory now that most gluten-intolerant people have something wrong with their bacteria. If I were you, I would get a genetic culture stool test.

F5a0ddffcf9ef5beca864050f090a790

(15515)

on July 22, 2013
at 06:38 PM

Lily, it turned out I did not have celiac disease! I have giardiasis, low immunity and tons of parasitic/pathogenic bacteria.

67871ef2326f29da48f1522827fc0f80

(704)

on July 22, 2013
at 06:13 PM

Celiac is hereditary, so you've had it longer than 4 years or you're a super-literate toddler! Seriously, I went misdiagnosed for about 40 years (they pinned me with several other things, never thinking to try Celiac, thank goodness it's better-known now!).

0
Ac52e7e2dfbb6fb8e89f67400a76bb58

on September 07, 2012
at 07:52 PM

After being super inspired by the results on the Autoimmune protocol for my Ankylosing Spondylitis, I decided to write a short book available in kindle and ibooks called:

The Autoimmune Paleo Diet which includes lots of DEElicious Recipes : ) It's $2.99

I also highly recommend Chris Kresser's Personal Paleo Code which has an autoimmune meal plan generator-very cool.

here are the links:

http://amzn.to/OXHwbz

http://bit.ly/RGLo5c

http://www.1shoppingcart.com/app/?af=1458070

Let me know what you think!

0
4babff333f3875b847f30f389afaee9d

on April 21, 2012
at 12:14 PM

You may want to consider looking at your auto-immune indicators. Even though you have the celiac under control, your symptoms sound like Hashimoto's (an auto-immune condition where your thyroid is under attack). Long before you test positive by conventional testing for TSH levels, your auto-immune indicators can be way up. If this is the case, you should see a Naturopath and get it under control before you develop the disease. The book "Why Am Still Having Thyroid Symptoms" is a very helpful tool. I believe the author, Dari Kharrazian, states in his book that 80% of people with celiac,intolerances, allergies towards gluten/wheat, also have Hashimoto's. The symptoms are the same as you are describing. If you have this condition, it is best to seek the help of a holistic healer as there are many causes. Happy health.

97ffbac59e88bdff6495d0a9b6f70ff7

(555)

on April 21, 2012
at 06:43 PM

I had my TSH level checked, and it was normal. But you are saying that this may not be a proper indication of Hasimoto's?

-1
F2c5a38f0398ea8035fc38f215a0f2b6

on April 19, 2012
at 08:30 AM

Very informative concept??? great thanks to you and to all the people who develop this site. Keep going and good luck.

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