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#511545 - 06/30/15 12:50 AM My AS Finally Resolved
IamGrateful Offline
Active_Member

Registered: 11/04/09
Posts: 55
Loc: San Francisco Bay Area, CA
I felt like I owed it to my AS community to finally come back and tell you how I've been out enjoying my life pain-free and iritis-free for quite a while now. I was diagnosed in 2009, and after tweaking my diet during the course of many years, even trying an abx protocol (didn't work), I finally found the key. It's been a year or two now that I don't get iritis. Pain has been gone for many years. I switched to kaiser recently and I told my new doctor I have AS (I was diagnosed by a doctor on my previous PPO insurance plan). He didn't believe me so he sent me for an x-ray of my back. He then sent me a letter saying that I do not have of Ankylosing spondylitis because there is no damage shown in the x-Ray. The key for me is my gut. NO sugar (not even from fruit) and no allergenic food. To make things easier, I only eat eggs, brown rice, some vegetables, greens, lots of salad, and meats. That's it. I am now seeing a naturopathic doctor in San Francisco to aid me in fully healing my gut and hopefully ending the food allergies so I can eat normal. I was helping a friend with Lyme to find answers and I came across a book, Why Can't I get Better? By Dr. Horowitz. It's about Lyme but for chronic/autoimmune illness too. I totally agree with Horowitz; theres a reason or reasons that we have a "chronic" illness. Could be Mercury poisoning, mold, gut problems, vitamin defiency, etc. but the key is finding it and fixing it and you can beat your chronic illness. That book basically describes my health journey all these years. Hope this helps someone that has a similar situation. Thanks for reading. smile


Edited by IamGrateful (06/30/15 01:14 AM)
_________________________
Diagnosed with AS in August 2009

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#511554 - 06/30/15 12:39 PM Re: My AS Finally Resolved [Re: IamGrateful]
miniowl Offline
Journeyman_AS_Kicker

Registered: 04/24/15
Posts: 107
Thank you for sharing, I'm so happy for you and it gives me so much hope!

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#511555 - 06/30/15 02:20 PM Re: My AS Finally Resolved [Re: IamGrateful]
IamGrateful Offline
Active_Member

Registered: 11/04/09
Posts: 55
Loc: San Francisco Bay Area, CA
Miniowl, you can do it! I felt relief immediately after starting the no starch diet. But it wasn't the cure. Find out what things you cannot tolerate, maybe try an elimination diet. Sugar even from fruit will eventually give me iritis. Build your gut back up with the right probiotics (VSL3 and a coconut water kefir from Whole Foods are great), homemade water kefir, sauerkraut and bone broths, l-glutamine. By the way, my ND just gave me some b12, shots , what a difference! Fatigue gone!! An ND could really help get your system back in shape.
I have to avoid eating what feeds my bad bacteria and candida. But I'll heal my gut someday, Im not giving up!
_________________________
Diagnosed with AS in August 2009

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#511559 - 06/30/15 03:10 PM Re: My AS Finally Resolved [Re: IamGrateful]
mooman Offline
Second_Degree_AS_Kicker

Registered: 03/13/09
Posts: 206
Hi there congrats , so many questions. How are your energy glucose levels without any sugar? Can you be more specific as to your current dietary regime eg, breakfast lunch supper and snacks. It would help a lot I am currently on nsd but I know I had problems with it before cutting out all sugar would be challenging. :-)

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#511564 - 06/30/15 04:58 PM Re: My AS Finally Resolved [Re: IamGrateful]
IamGrateful Offline
Active_Member

Registered: 11/04/09
Posts: 55
Loc: San Francisco Bay Area, CA
Hi Mooman,

I found that brown rice, and the vegetable I eat give me enough carbs. The veggies I can eat are: zuchinni, carrots, celery, cucumber, spinach, kale, and squash, chayote, jicama, onion and garlic, and lettuce. I can also eat avocado and lemon.

Breakfast, eggs with brown rice, and veggies (my cholesterol is still perfect btw)

Lunch and dinner: brown rice with any kind of meat and lots of salad. I don't get hungry really between meals because I eat big meals, but if I do, I'll eat carrot sticks. Or I snack on the dried seaweed from Sprouts Market.
_________________________
Diagnosed with AS in August 2009

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#511565 - 06/30/15 05:22 PM Re: My AS Finally Resolved [Re: IamGrateful]
IamGrateful Offline
Active_Member

Registered: 11/04/09
Posts: 55
Loc: San Francisco Bay Area, CA
Also, I pour braggs raw Apple cider vinegar all over my salad at dinner time. (I love the taste) and also sauerkraut.
_________________________
Diagnosed with AS in August 2009

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#511570 - 06/30/15 07:48 PM Re: My AS Finally Resolved [Re: IamGrateful]
miniowl Offline
Journeyman_AS_Kicker

Registered: 04/24/15
Posts: 107
Great advice, thank you!

I've been curious about adding rice or some kind of carb to my diet, my NSD is basically super low/no carb at the moment. It's working in terms of keeping pain away but I don't think super low carb is the best idea long term (no prebiotics to keep the probiotics alive) Any recommendations for rice, did you phase it in slowly?

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#511571 - 06/30/15 08:11 PM Re: My AS Finally Resolved [Re: IamGrateful]
IamGrateful Offline
Active_Member

Registered: 11/04/09
Posts: 55
Loc: San Francisco Bay Area, CA
I think I just stopped eating fruit and just started eating rice. Are you eating fruit? I used to eat lots of fruit while on the NSD to feel full. But I would get really low energy when hungry again. And my iritis would flare up for months on end. When I stopped the fruit, iritis went away and I was able to get off the Doxycycline. I had been on it for a year or more to reduce the severity and duration of the iritis flares .I'm sure the doxy gave me the candida I now have to fight. Slowly my gut has been healing, because when I mess up and accidentally eat a a forbidden ingredient, there are no flare ups, except for an acne blemish. Even my acne is getting much better now.
Also, I may have been sensitive to egg, but now I can eat it.


Edited by IamGrateful (06/30/15 08:16 PM)
_________________________
Diagnosed with AS in August 2009

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#511577 - 07/01/15 03:16 AM Re: My AS Finally Resolved [Re: IamGrateful]
mooman Offline
Second_Degree_AS_Kicker

Registered: 03/13/09
Posts: 206
Lol , I think you might have an acquired taste for apple cider vinegar. How does Brown Rice work its high in starch?

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#511585 - 07/01/15 09:07 AM Re: My AS Finally Resolved [Re: IamGrateful]
IamGrateful Offline
Active_Member

Registered: 11/04/09
Posts: 55
Loc: San Francisco Bay Area, CA
I know it sounds incredible. When my abx-prescribing-rheumatologist first suggested I stop eating sugars, I thought he was crazy and didn't listen. Then a doctor in Mexico told me the same thing. So I finally quit eating fruit and saw immediate results. I think I was burping much less, that was the first benefit. I even started eating organic blue corn and spelt at that time! I can't even believe it! But I think it was keeping my candida alive because when I left the corn and spelt I was able to stop the nystatin finally. Brown rice is the only grain I eat now, oh and quinoa. White rice is ok very occasionally and not too much. It also feeds my candida.
_________________________
Diagnosed with AS in August 2009

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#511601 - 07/02/15 05:22 AM Re: My AS Finally Resolved [Re: IamGrateful]
Staffy Offline
Apprentice_AS_Kicker

Registered: 02/02/10
Posts: 79
Loc: Oxford, England
I admire your determination and discipline with what must be a very difficult diet

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#511620 - 07/02/15 05:55 PM Re: My AS Finally Resolved [Re: IamGrateful]
IamGrateful Offline
Active_Member

Registered: 11/04/09
Posts: 55
Loc: San Francisco Bay Area, CA
Somehow I think the NSD is harder than the diet I have now. I missed the starch so much! Now I'm hoping I can eat fruit again soon.
_________________________
Diagnosed with AS in August 2009

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#511643 - 07/04/15 09:39 PM Re: My AS Finally Resolved [Re: IamGrateful]
Dotyisle Offline


Registered: 03/07/02
Posts: 9383
Loc: Rosario, Argentina
Thanks for sharing story, hope you continue to get better.

Tim
_________________________
AS may win some battles, but I will win the war.

KONK - Keep ON Kicking

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#511645 - 07/04/15 11:35 PM Re: My AS Finally Resolved [Re: IamGrateful]
IamGrateful Offline
Active_Member

Registered: 11/04/09
Posts: 55
Loc: San Francisco Bay Area, CA
Thank you. I wish the same with all my heart for all of you.
_________________________
Diagnosed with AS in August 2009

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#512041 - 08/09/15 07:59 PM Re: My AS Finally Resolved [Re: IamGrateful]
miniowl Offline
Journeyman_AS_Kicker

Registered: 04/24/15
Posts: 107
Bringing this post back bc I have one more question! Any particular kind of brown rice?

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#512043 - 08/09/15 08:22 PM Re: My AS Finally Resolved [Re: IamGrateful]
IamGrateful Offline
Active_Member

Registered: 11/04/09
Posts: 55
Loc: San Francisco Bay Area, CA
Yes, i haven't had a type of brown rice that doesn't agree with me. But brown rice cakes and rice flours aren't that great. Maybe the way they break down in my gut feeds my Candida or bacteria.
_________________________
Diagnosed with AS in August 2009

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#512046 - 08/09/15 10:09 PM Re: My AS Finally Resolved [Re: IamGrateful]
miniowl Offline
Journeyman_AS_Kicker

Registered: 04/24/15
Posts: 107
Great, thank you! Have been eating sticky rice the last couple days but think it might give me candida issues too. I'm not sure if I can handle brown rice but I'll give it a try and find out.

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#512234 - 08/23/15 07:52 PM Re: My AS Finally Resolved [Re: IamGrateful]
Dreamer Offline
Member

Registered: 05/28/14
Posts: 42
Loc: Arizona, US
Thanks for posting all this, "IamGrateful." It's important for us to have hope, and success stories give us hope.

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#512303 - 08/27/15 10:09 AM Re: My AS Finally Resolved [Re: IamGrateful]
Eska Offline
Member

Registered: 03/10/15
Posts: 26
Hello, Just wondering if you tested for HLA-B27? Thanks

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#512304 - 08/27/15 11:34 AM Re: My AS Finally Resolved [Re: IamGrateful]
IamGrateful Offline
Active_Member

Registered: 11/04/09
Posts: 55
Loc: San Francisco Bay Area, CA
Yes, I tested positive for the HLA B-27 gene. Update: a ate 1/3 of a french fry, and I literally could not turn my neck to one side. Soooo much pain. Will avoid ever doing that again! I've been cheating a bit and eating some white rice in vietnamese noodle soup and Indian Dosa and idly and I broke out with some acne again so I
_________________________
Diagnosed with AS in August 2009

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#512305 - 08/27/15 11:35 AM Re: My AS Finally Resolved [Re: IamGrateful]
IamGrateful Offline
Active_Member

Registered: 11/04/09
Posts: 55
Loc: San Francisco Bay Area, CA
Will go back to my strict brown rice diet.
_________________________
Diagnosed with AS in August 2009

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#512307 - 08/27/15 03:10 PM Re: My AS Finally Resolved [Re: IamGrateful]
Eska Offline
Member

Registered: 03/10/15
Posts: 26
thanks a lot for the reply...I just need your input further on this subject.

I have tested positive for HLA-B27 and had iritis once about 7 years ago (when it all started) only last year was officially diagnosed with AS.

I have seen a Naturopathic Doctor when I was officially diagnosed with AS, and she did recommend I do the allergy testing, but she said I have to consume starch. She gave me some probiotics and fish oil for gut healing. I haven't taken either, and in fact I never went back to see her after. I'm just not sure if the allergy testing is worth the monecy, it is so expensive. What do you think? Also what did your ND recommend for gut healing for you.



Edited by Eska (08/27/15 03:12 PM)

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#512318 - 08/27/15 10:20 PM Re: My AS Finally Resolved [Re: IamGrateful]
IamGrateful Offline
Active_Member

Registered: 11/04/09
Posts: 55
Loc: San Francisco Bay Area, CA
I agree with the need for gut healing. An ND may be a good help with that. Yes, I've read that probiotics need to feed on something, maybe that's why she wants you to eat starch. I feel brown rice is ok for me As long as I don't eat fruit or sugar. I eat lots of spinach and kale. I do take lots of fish oil and make water kefir and eat sauerkraut and take probiotics. I still have to do the stool test to find out what bacteria I'm dealing with. My ND wants me to do it. I've been procrastinating but I need to do it soon.
_________________________
Diagnosed with AS in August 2009

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#512319 - 08/27/15 10:23 PM Re: My AS Finally Resolved [Re: IamGrateful]
IamGrateful Offline
Active_Member

Registered: 11/04/09
Posts: 55
Loc: San Francisco Bay Area, CA
Oh and I've done allergy testing, it was useless to me. I didn't test positive for any allergy to any food. But I know for sure I can't digest most foods. I would skip the testing if it's going to be too expensive and just listen to your body when it tells you it doesn't like certain foods.
_________________________
Diagnosed with AS in August 2009

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#512320 - 08/27/15 10:25 PM Re: My AS Finally Resolved [Re: IamGrateful]
IamGrateful Offline
Active_Member

Registered: 11/04/09
Posts: 55
Loc: San Francisco Bay Area, CA
For gut healing he told me to make bone broths and told me to take L-glutamine
_________________________
Diagnosed with AS in August 2009

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#512413 - 09/01/15 06:27 PM Re: My AS Finally Resolved [Re: IamGrateful]
L33 Offline
Apprentice_AS_Kicker

Registered: 07/17/13
Posts: 78
Loc: South Africa
well done in taming your AS....

I agree with you completely about healing the gut first!

From the research I have done a leaky gut is one of the main components which perpetuates AS. My view goes like this: Inflammation in the gut causes the gut walls to weaken and tear, bacteria and food particles enter the blood which causes an immune response with a twist. The immune response attacks the bacteria and also the spinal tissue which looks identical to the bacteria. At the same time the immune system also attacks the bacteria in the intestine which causes more inflammation and more leaky gut which causes it to go on in a "never ending" cycle which could be stopped if heal the gut lining and break the cycle. This sounds simple but it is more complex than that since food allergies can also cause gut inflammation and jump start the cycle again.For this reason I have done a comprehensive food allergy test. The one thing I have found useful is that if I don't eat at all my pain just goes away......

I am currently taking L glutamine & probiotics and I am finding that very helpful.
_________________________
HLA B27+
Have AS since the age of 13.
Diagnosed in 2005 at the age of 22
ACV treatment see here https://www.youtube.com/watch?v=iputWQ1JHT8
https://www.youtube.com/watch?v=KQghiDNGp3s
https://www.youtube.com/watch?v=FVDbTmFOsxg

Phase 1 ACV
Phase 2 ACV + No Gluten/wheat products(Tested positive Allergies)
Phase 3 ACV + NSD + High fat (Energy)

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#512693 - 09/19/15 11:41 AM Re: My AS Finally Resolved [Re: IamGrateful]
Mark55 Offline
Member

Registered: 05/20/09
Posts: 45
Hi Grateful, I have a quick question for you. Do you have fried food at all in your diet? Carol Sinclair's book seems to warn again fried food which someone else on the forum mentioned to me.

I'm thinking of making my diet similar to yours (cutting out fruit and any sugar basically as well as the starch and dairy already missing) but without introducing the brown rice, at least to begin with. I'm worried about getting enough calories and the bacon I have for breakfast currently helps with that a lot.

Thanks for your help,
Mark

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#512710 - 09/20/15 09:47 PM Re: My AS Finally Resolved [Re: IamGrateful]
miniowl Offline
Journeyman_AS_Kicker

Registered: 04/24/15
Posts: 107
Hi Mark,
I am also no dairy and no sugar. I tried rice but it flared up a candida or bacterial infection so my diet is pretty similar to what you describe. I've found that my saving grace is fat. I melt coconut oil over any meat, fish or cooked vegetable. I'm probably well over 5T of it a day. Additionally I pour tons of olive oil on my salads. I modeled how I eat based on Terry Wahl's Paleo Plus ketogenic diet and it seems to be helping. I figured if I can't tolerate carbs bc I react to sugar in fruit and starch in rice then I might as well do the healthiest ketogenic diet I can and her level 3 diet that she uses for MS has been a good guide. I used to be very hungry when I was started NSD. I think I would overeat protein because I didn't know what else to eat but when I switched to upping the fat and only eating protein to the point that it seemed appealing, I think this helped.
I use salt (and sometimes herbs) to make the coconut oil taste good and I use salt and ACV to make a olive oil into a dressing.
Also, I'm not advocating keto diets or anything but if you find that you basically have to eat keto to keep your symptoms away, coconut oil is particularly key as a fat. It has a lot of short chain fatty acids which your liver can turn into ketones and your body can use as an alternate fuel to glucose.
Hope this is helpful!

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#512712 - 09/20/15 11:31 PM Re: My AS Finally Resolved [Re: IamGrateful]
Mark55 Offline
Member

Registered: 05/20/09
Posts: 45
Thanks so much for your reply, that's very helpful. I use coconut oil already to cook but I don't add it to things as an extra, thanks for the idea. I'll check out info on the ketogenic diet you mentioned. Luckily I have always had a taste for fatty meat so I eat plenty but I'll bear in mind the point about trying to fill up on protein. Thanks again smile

Mark

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#512785 - 09/27/15 08:32 AM Re: My AS Finally Resolved [Re: IamGrateful]
lulu12 Offline
Fifth_Degree_AS_Kicker

Registered: 07/07/13
Posts: 368
Thanks so much for sharing! I have also found that fruit causes issues but due to the strictness of NSD I still include it. I am wondering do you consume any nuts? Almond flour or nut butters? What have you found has happened weight wise since adding in rice?

Initially on NSD I lost a lot of weight about 25 pounds but now for some reason I am gaining. I have been afraid to add back in probiotics or rice but feel maybe its time to do so. I rely a lot on the nut butters and almond flour to get me through and while this didnt seem to be a problem initially I know it could be adding to the wight gain.

When you say brown rice, I'm confused is it whole grain? Also do you use honey or maple syrup? I'm assuming no because of the sugars.

Thanks!!

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#512926 - 10/09/15 01:16 PM Re: My AS Finally Resolved [Re: IamGrateful]
IamGrateful Offline
Active_Member

Registered: 11/04/09
Posts: 55
Loc: San Francisco Bay Area, CA
Hi Lulu12,

I guess it is whole grain, it is not the refined white rice. I like the jasmine brown rice, I get it from trader joes. I used to not be able to have nuts but recently I tried pecans and some pistachios and I did ok. So I guess my gut is healing! My weight is healthy. I can even exercise and I won't lose extra weight.

No I still can't use any type of sugars; no honey or maple syrup. I think my candida will come back immediately if I do.

I make my own probiotics: water kefir and I think that may be why I'm doing so much better with my gut flora.
_________________________
Diagnosed with AS in August 2009

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#512927 - 10/09/15 01:19 PM Re: My AS Finally Resolved [Re: IamGrateful]
IamGrateful Offline
Active_Member

Registered: 11/04/09
Posts: 55
Loc: San Francisco Bay Area, CA
Thank you L33! I think my gut is healing slowly! Finally my really bad acne went away and I can tolerate the nuts I've tried so far! Yay!
_________________________
Diagnosed with AS in August 2009

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#516859 - 04/04/17 04:09 PM Re: My AS Finally Resolved [Re: miniowl]
Cabby Offline
New_Member

Registered: 12/12/11
Posts: 17
Hi,
I was wondering if you are still using Terry Wahl's Paleo Plus protocol and if the results are still good? I think I'm about to try it. I have been on a NSD for a while, but recently having more symptoms. Wahl includes some things like cinnamon, ginger, tumeric, beets, carrots. I don't eat those now,so thinking about eliminating those. What do you do?

Thanks for your reply

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#517056 - 05/04/17 03:54 PM Re: My AS Finally Resolved [Re: IamGrateful]
Marianne Offline
Lurker

Registered: 01/02/16
Posts: 1
Hi,
I gave up starch 3 years ago and had great results in about a months time (it got worse before it got better, like it was chasing around my body, someone told me that this was because I went "cold turkey" instead of changing my diet slowly). Stress (physical or mental), sugar (refined or too much fruit) over doing on nuts (I eat blanched almonds) are still issues. Ginger works great as an anti-inflammatory, I blend fresh ginger with water in my vitamixer, strain out the pulp, put it in the fridge and let the starch settle to the bottom and drink it chilled poured off the top. For me, ginger works so much better than 800mg Ibuprofen the Dr. had put me on. Always tell your Dr. if you use or plan to use ginger especially if you are on blood thinners or going to have an operation.

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#517083 - 05/09/17 01:44 PM Re: My AS Finally Resolved [Re: Marianne]
Kellybells Offline
Active_Member

Registered: 01/21/17
Posts: 68
Loc: Toronto, ON
Thank you Marianne!

I tried your ginger trick last night and it worked like a charm: the starch settled to the bottom and the liquid tested clear with iodine. My inflammation is fine with NSD but I sure do miss the taste of ginger. Can't wait to experiment with the extract.

Have you tried this approach with any other foods (e.g., fresh turmeric root, spices, fruit/veg, etc.)?
_________________________
Suspected SpA. HLA B27, xray, u/sound, blood tests all -ve. Ancient history of plantar fasciitis, SI joint pain, knee arthritis. Recent history of tendinitis, neck pain, debilitating finger pain and stiffness (especially mornings). No diagnosis, no meds.

Jan 2017 - discovered NSD - 97% improvement in symptoms, continually amazed by my results, wish I'd found kickAS sooner
2014 - stopped eating all grains
2012 - stopped eating wheat
2010 - stopped eating dairy

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