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 I assume not, since my autoimmune response is no longer active with the removal of gluten.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.
asked byCollege (555)
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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.
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):
- Keep eating Paleo (no eggs, no dairy, no nightshades, no nuts). In my case it is also no spices and no citrus fruit.
- Think about adding good probiotics or water kefir (as Nancy suggested).
- 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.
- Do not use any oils. I am still looking for a good substitute since we cannot have butter.
- If my herbs will help me, I will tell you the source. If not-I will not recommend them.
- There is another gluten intolerant Paleohacker here, Ali - she told me she will share what her naturopath will tell her.
- Don't give up. Don't ever give up. You are not alone!
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:
Let me know what you think!
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.