Has anyone done the Autoimmune Protocol Diet (AIP)? Any advice?

[Shelydon]

I would like to try the AIP diet for a couple of months and sort out what foods are causing me pain.  I have Sjogrens and have not ruled out Rheumatoid Arthritis.  I hurt all the time.  I know I need to find 30 or so recipes in order to make this work.  In the past, I have tried similar diets and I just quit eating because I hate the food.  I don't like greens like Kale or mushrooms or salmon, which all seem to be staples of the AIP diet.  Any suggestions on a place to find solid recipes?

[Katy]

I tried it, it made no difference for me. If anything I got worse, but to be fair that may have been due to a bad drug reaction at the time and had nothing to do with the diet. 

Dr Brooke Goldner’s program (free on YouTube or her Smoothie Shred Facebook group) helped a great deal though. She also has books for sale on Amazon. 

[Catwoman]

I don't know anything about this, @Shelydon, but I'm so sorry you're in pain and I hope you find something that helps you!

[Pawz4me]

In true Hive fashion I'll post w/o answering the question you actually asked, just in case any of it is helpful --

I have RA and may have Sjogren's, so the flip of what you're dealing with. My current official diagnosis is RA with sicca.

I haven't found that what I eat makes any difference at all in how I feel as far as joint/muscle/connective tissue pain. And I have done quite a lot of experimenting over the years. Tweaking my diet to see how it affects me is sort of a weird hobby.

Despite the AI issues (I also have AITD) my inflammation markers have never been elevated, even when I've had multiple swollen joints. My rheumatologists (I've had two over the years, one moved) both say that being able to keep my inflammation markers low is very likely due to the way I've eaten for over 35 years, which is --

• a very low processed food, mostly vegetarian diet
• I mostly only exclude or limit things because I also have IBS, and what I eat absolutely does make a difference with that
• I eat lots of whole grains and lots of healthy carbs in general
• lots of veggies, especially leafy greens, and a small amount of fruit every day
• some fermented food (usually sauerkraut and/or kombucha) every day
• I strictly limit legumes and nuts, but I eat some seeds (pepitas or sunflower) every day
• I eat very little dairy or sugar/sweets, but I use sucralose in my coffee
• Overall I eat high carb/lowish protein/lowish fat. Most of my fat intake comes from things like olives, seeds, salmon and tuna

So while I don't think my diet makes a whit of difference in the day-to-day RA pain/stiffness, I do think (hope) that it's what's helping keep my overall inflammation level under control, which I hope means I'm less likely to develop the other things that often go along with RA, like interstitial lung disease and cardiovascular disease. And I'm guessing it's likely I'd feel much worse if I ate a more standard American diet.

The things that have been most helpful to me are biologic drugs and making sure I get adequate (but not too much) movement every day, and resting when my body tells me that's what it needs.

[prairiewindmomma]

I tried this diet about 10 years ago. No effect for me. My BTDT advice is to watch your oxalate intake on this diet. A sudden switch to high oxalate foods (google for the list) caused some issues for me. You are supposed to pair them with high calcium foods (salmon, sardines, etc) to minimize the effects. This is never called out in the diet plan (the reasoning) and I did not pair them highly enough (doubled down on the almond milk instead which is also high oxalate). 
 

Eating cleanly and minimally processed and nutrient dense and taking probiotics does help—cutting out huge classes of foods like eggs and nuts and nightshades was overly restrictive. Grains and legumes are also not harmful to my body (I am celiac negative, my blood sugars are fine.)

Edited June 1 by prairiewindmomma

[GoVanGogh]

I have several autoimmunes and young onset Parkinson’s. I am monitored/tested for Sjogren’s and lupus due to symptoms. (I assumed I would be dx with MS when I was dx with Parkinson’s, but they do have many similar symptoms.) I have constant pain. (And your post is a good reminder that I need to call my rheumatologist on Monday!) 
I am mostly Whole Foods/plant based., which has helped considerably. I also try to get as much raw fruits and veggies in as possible.I need to get more on track, as my stress eating has been out of control this past year. I really like Dr Goldner’s book Goodbye Lupus. Another book that I have found helpful is The Green Smoothie Revolution. The recipes are easy, basic ingredients, all I have tried have been very tasty. 
For myself, keeping a food log and tracking pain and digestion has been helpful. Dairy and processed foods with sugar spike my pain. I try to watch the Omega 3 vs Omega 6 ratio. Hot yoga in an infrared heated studio has been a lifesaver for me. 

[prairiewindmomma]

An aside—do your due diligence and keep up with your bloodwork. For some people restrictive diets do seem to help, but there is a chunk of us who see no benefit and can have worsening labs. Disease can have different etiologies, iykwim. Brooke Goldner, mentioned above, is a psychiatrist, not a MD—does not see patients re: lupus, does not publish in peer reviewed journals, etc. Fuhrman is another I lump into being more snakeoil salesman > doctor. Campbell and McDougall are more credible, imo.

I think gut permeability does factor into a lot of AI….but dont get too rigid in the details, iykwim.

 

[Shelydon]

2 hours ago, Pawz4me said:

In true Hive fashion I'll post w/o answering the question you actually asked, just in case any of it is helpful --

I have RA and may have Sjogren's, so the flip of what you're dealing with. My current official diagnosis is RA with sicca.

I haven't found that what I eat makes any difference at all in how I feel as far as joint/muscle/connective tissue pain. And I have done quite a lot of experimenting over the years. Tweaking my diet to see how it affects me is sort of a weird hobby.

Despite the AI issues (I also have AITD) my inflammation markers have never been elevated, even when I've had multiple swollen joints. My rheumatologists (I've had two over the years, one moved) both say that being able to keep my inflammation markers low is very likely due to the way I've eaten for over 35 years, which is --

• a very low processed food, mostly vegetarian diet
• I mostly only exclude or limit things because I also have IBS, and what I eat absolutely does make a difference with that
• I eat lots of whole grains and lots of healthy carbs in general
• lots of veggies, especially leafy greens, and a small amount of fruit every day
• some fermented food (usually sauerkraut and/or kombucha) every day
• I strictly limit legumes and nuts, but I eat some seeds (pepitas or sunflower) every day
• I eat very little dairy or sugar/sweets, but I use sucralose in my coffee
• Overall I eat high carb/lowish protein/lowish fat. Most of my fat intake comes from things like olives, seeds, salmon and tuna

So while I don't think my diet makes a whit of difference in the day-to-day RA pain/stiffness, I do think (hope) that it's what's helping keep my overall inflammation level under control, which I hope means I'm less likely to develop the other things that often go along with RA, like interstitial lung disease and cardiovascular disease. And I'm guessing it's likely I'd feel much worse if I ate a more standard American diet.

The things that have been most helpful to me are biologic drugs and making sure I get adequate (but not too much) movement every day, and resting when my body tells me that's what it needs.

I have very high inflammation markers right now.  Cutting out sugar made a really big difference for me, so I want to see what else is bothering me.  I have alternately cut out dairy and then gluten, but did not see a difference.  I feel like cutting out everything and adding it back will work better, but I really dislike a lot of the AIP foods

[Soror]

I faithfully did AIP for months after being diagnosed with Hashimoto's. There was no reduction in my antibody levels. 

I feel the best eating foods as fresh as possible with lots of fruits and veggies. 

I do feel better if I'm not too high-carb but I found that the carbs allowed on Paleo and AIP weren't great for me. 

I've done SCD, Paleo, and then AIP. I'm not a fan of any overly restrictive diet now. Restricted eating stinks. 

[Shelydon]

2 hours ago, prairiewindmomma said:

I tried this diet about 10 years ago. No effect for me. My BTDT advice is to watch your oxalate intake on this diet. A sudden switch to high oxalate foods (google for the list) caused some issues for me. You are supposed to pair them with high calcium foods (salmon, sardines, etc) to minimize the effects. This is never called out in the diet plan (the reasoning) and I did not pair them highly enough (doubled down on the almond milk instead which is also high oxalate). 
 

Eating cleanly and minimally processed and nutrient dense and taking probiotics does help—cutting out huge classes of foods like eggs and nuts and nightshades was overly restrictive. Grains and legumes are also not harmful to my body (I am celiac negative, my blood sugars are fine.)

 

2 hours ago, GoVanGogh said:

I have several autoimmunes and young onset Parkinson’s. I am monitored/tested for Sjogren’s and lupus due to symptoms. (I assumed I would be dx with MS when I was dx with Parkinson’s, but they do have many similar symptoms.) I have constant pain. (And your post is a good reminder that I need to call my rheumatologist on Monday!) 
I am mostly Whole Foods/plant based., which has helped considerably. I also try to get as much raw fruits and veggies in as possible.I need to get more on track, as my stress eating has been out of control this past year. I really like Dr Goldner’s book Goodbye Lupus. Another book that I have found helpful is The Green Smoothie Revolution. The recipes are easy, basic ingredients, all I have tried have been very tasty. 
For myself, keeping a food log and tracking pain and digestion has been helpful. Dairy and processed foods with sugar spike my pain. I try to watch the Omega 3 vs Omega 6 ratio. Hot yoga in an infrared heated studio has been a lifesaver for me. 

 

1 hour ago, prairiewindmomma said:

An aside—do your due diligence and keep up with your bloodwork. For some people restrictive diets do seem to help, but there is a chunk of us who see no benefit and can have worsening labs. Disease can have different etiologies, iykwim. Brooke Goldner, mentioned above, is a psychiatrist, not a MD—does not see patients re: lupus, does not publish in peer reviewed journals, etc. Fuhrman is another I lump into being more snakeoil salesman > doctor. Campbell and McDougall are more credible, imo.

I think gut permeability does factor into a lot of AI….but dont get too rigid in the details, iykwim.

 

Thanks all!  I think the AIP diet is attractive because it is very straightforward.  "Eat clean" doesn't really give me enough rules.  I need very black and white no wiggle room rules or I will eat what I want.  I am a super taster, so most vegetables make me gag.  That said, I cook at home, limit processing food, don't eat sugar etc. I have no idea what other foods are bothering me, I don't have pain spikes, I just hurt 100% of the time. Waking from a dead sleep hurt, can't get out of the car hurt all.the.time.  I am not overweight.  I am active.  I just am not able to 'eat fresh'  or 'eat clean ' without specific recipes and rules.

 

Edited June 1 by Shelydon

[gardenmom5]

9 hours ago, Katy said:

I tried it, it made no difference for me. If anything I got worse, but to be fair that may have been due to a bad drug reaction at the time and had nothing to do with the diet. 

 

Is it possible you felt bad because you were detoxing on the diet?

[mom31257]

I am so sorry you are in such pain! 

Have you had any allergy testing? I started having a lot of pain along with some other symptoms and through bloodwork found I was allergic to dairy. Once I went off dairy, my muscle pain stopped. I guess it is like an inflammation response rather than a histamine response. 

My sister has fibromyalgia and some other types of arthritis. She is seeing decreased pain from taking turmeric. 

[Katy]

18 hours ago, gardenmom5 said:

Is it possible you felt bad because you were detoxing on the diet?

No. I think it’s more likely that I’m personally extremely sensitive to saturated fat and I was eating too much of it with all the salmon. To me the quantity of saturated fat seems more important than fatty acid ratios. I also personally cannot eat much protein, at least animal protein, without feeling like I the flu and my sweat smelling like ammonia. I think my body personally just does much better on a nearly vegetarian diet. The only animal proteins that don’t seem to bother me are things like egg whites and shrimp. 

[gardenmom5]

2 minutes ago, Katy said:

No. I think it’s more likely that I’m personally extremely sensitive to saturated fat and I was eating too much of it with all the salmon. To me the quantity of saturated fat seems more important than fatty acid ratios. I also personally cannot eat much protein, at least animal protein, without feeling like I the flu and my sweat smelling like ammonia. I think my body personally just does much better on a nearly vegetarian diet. The only animal proteins that don’t seem to bother me are things like egg whites and shrimp. 

how's your liver? (or gallbladder).  that can be an early sign.

 

[Katy]

21 minutes ago, gardenmom5 said:

how's your liver? (or gallbladder).  that can be an early sign.

 

It's probably genetic & not related to liver health. My promethease & whatever the other 3rd party genetic report I got after doing 23&me flagged several genetic issues:

• that I had a mutation that made me likely to need to eat low saturated fat to maintain my weight. I guess the people who can induce type 2 diabetes by eating higher saturated fat have a genetic change that leads to far less insulin receptors on smooth muscle cells. And since saturated fat blocks insulin receptors in everyone, having 1 insulin receptor per cell instead of 18 means eating more saturated fat can have a major impact on cell health & blood glucose.
• MTHFR. I have 3 mutations.  A few of them are well known issues.  A third hasn't been researched much but probably contributes to early heart disease on my dad's side.
• I have a genetic issue that prevents me from breaking down protein as well as most people.  Occasionally you hear of someone, usually women for some reason, dying after going on a health kick and eating a high protein diet.  They eventually figure out her blood had dangerous levels of ammonia because of the same genetic defect.

 

[Rosie_0801]

Not all mushrooms taste the same. My brother hates mushrooms but can eat oyster mushrooms, since they'll soak up whatever they're cooked in, and the black fungus mushroom from the Chinese grocer. 

[Katy]

On 6/1/2024 at 2:53 PM, prairiewindmomma said:

An aside—do your due diligence and keep up with your bloodwork. For some people restrictive diets do seem to help, but there is a chunk of us who see no benefit and can have worsening labs. Disease can have different etiologies, iykwim. Brooke Goldner, mentioned above, is a psychiatrist, not a MD—does not see patients re: lupus, does not publish in peer reviewed journals, etc. Fuhrman is another I lump into being more snakeoil salesman > doctor. Campbell and McDougall are more credible, imo.

I think gut permeability does factor into a lot of AI….but dont get too rigid in the details, iykwim.

 

Actually Dr Goldner, MD is a board certified psychiatrist (perhaps you’re confusing psychiatry and psychology?) Not that medical training prevents you from being a quack. She now exclusively sees patients who follow her program. She has published case studies. She’s focused more on patients than research, it’s true. But at this point thousands of people  credit her for saving their lives. It doesn’t mean her ridiculously strict diet is easy though. I definitely feel best and have much better labs when I’m following her program, but it’s hard for me even when I have seen the proof it works for me. 

Absolutely, gut permeability is an issue. 

[dsmith]

While I haven't done AIP yet, I did do Wahl's protocol for over a year. I had more energy and lost weight, but I can't say it helped with the active MS flare I was in the middle of when I started. It took over 2 years for that to resolve. Wahls is similar I think, but I didn't cut out nightshades. My stomach really didn't like all the meat, so after reaching out to Dr. Wahls she agreed it would be better for me to reduce meat and include legumes, which worked really well for me. Then I completely lost the desire to do special diets for awhile. My current doctor would like me to try AIP for Hashimoto's, and I see they have introduced a modified AIP that includes legumes and I think seeds, not sure. I may try that, but I did cut out wheat products again. I'm not sure if it's the gluten or a different protein I react to, but I read an article about a study done with MS patients, and they weren't reacting to gluten, but another protein. I can't remember what it was - if I remember I will link it later. I also discovered that guar gum bothers my stomach a lot, so I removed that as well as dairy. At the moment I am reading Nutrivore by Dr. Sarah Ballantyne, and trying to follow her recommendations. I've been adding a lot more fruit and veggies, eating the rainbow, legumes, etc. I would say my diet is mostly plant-based, but I love my husband's bone broth and will have that every day if it's available. I do eat some meat here and there and I have some weekends where I will eat everything, lol. I feel like crap when that happens, though. When I'm eating better, I feel better - more energy, less inflammation, less achiness, sleep better, no GERD, etc.

[Soror]

2 hours ago, dsmith said:

While I haven't done AIP yet, I did do Wahl's protocol for over a year. I had more energy and lost weight, but I can't say it helped with the active MS flare I was in the middle of when I started. It took over 2 years for that to resolve. Wahls is similar I think, but I didn't cut out nightshades. My stomach really didn't like all the meat, so after reaching out to Dr. Wahls she agreed it would be better for me to reduce meat and include legumes, which worked really well for me. Then I completely lost the desire to do special diets for awhile. My current doctor would like me to try AIP for Hashimoto's, and I see they have introduced a modified AIP that includes legumes and I think seeds, not sure. I may try that, but I did cut out wheat products again. I'm not sure if it's the gluten or a different protein I react to, but I read an article about a study done with MS patients, and they weren't reacting to gluten, but another protein. I can't remember what it was - if I remember I will link it later. I also discovered that guar gum bothers my stomach a lot, so I removed that as well as dairy. At the moment I am reading Nutrivore by Dr. Sarah Ballantyne, and trying to follow her recommendations. I've been adding a lot more fruit and veggies, eating the rainbow, legumes, etc. I would say my diet is mostly plant-based, but I love my husband's bone broth and will have that every day if it's available. I do eat some meat here and there and I have some weekends where I will eat everything, lol. I feel like crap when that happens, though. When I'm eating better, I feel better - more energy, less inflammation, less achiness, sleep better, no GERD, etc.

So, isn't the lady that wrote Nutrivore the same lady that started AIP???? It looks the same it seems she's changed her stance on some things.

[prairiewindmomma]

19 hours ago, Katy said:

Actually Dr Goldner, MD is a board certified psychiatrist (perhaps you’re confusing psychiatry and psychology?) Not that medical training prevents you from being a quack. She now exclusively sees patients who follow her program. She has published case studies. She’s focused more on patients than research, it’s true. But at this point thousands of people  credit her for saving their lives. It doesn’t mean her ridiculously strict diet is easy though. I definitely feel best and have much better labs when I’m following her program, but it’s hard for me even when I have seen the proof it works for me. 

Absolutely, gut permeability is an issue. 

Scroll to the bottom of her page: https://www.goodbyelupus.com/appointments/  She states, in bold letters, that she does not see patients for medical reasons; she only advises re: her nutritional program. As far as her posting studies, I found only this one: https://ijdrp.org/index.php/ijdrp/article/view/47  in a journal where the advisory board is Campbell, Esselstyn, Furhman, McDougall, and the like: https://ijdrp.org/index.php/ijdrp/about/editorialTeam  I'm glad that the program works for you, and you have better labs---my point is that she is not a board certified rheumatologist, trained in dealing with lupus or other rheumatological disease, and that she has not published in academic journals with double blinded reviewers. 

I'm not trying to entirely dismiss her, I'm saying "caveat emptor". I know way too many people who follow diets without also seeking proper medical care....and I've seen some of the ugly outcomes from unmanaged lupus. Before medication, five year survival rates were <50%.  It's now above 95% since they've been able to add some critical therapies.  Given that there's a Sjogren's (which she mentions above) generally runs in a pack with RA and lupus, OP needs to be seen by a qualified rheumatologist if she hasn't been in addition to doing whatever nutritional therapies she would like. 

----

If OP is trying to figure out what hurts her, but is a super taster and struggles, then maybe she could try cutting out whole classes of foods for a month, and then adding them back in.  Like, go one month without dairy and then add it back and see what happens. Go a month gluten free, then add back in.  Eggs would be the third class that I would try.  Those tend to be the big three.  Those are nice clear bright line rules, but it's not a strict AIP diet if she can't manage it. 

https://healmedelicious.com/15-easy-aip-dinner-recipes/

https://peopleschoicebeefjerky.com/blogs/news/aip-diet-recipes

 

[Katy]

25 minutes ago, prairiewindmomma said:

Scroll to the bottom of her page: https://www.goodbyelupus.com/appointments/  She states, in bold letters, that she does not see patients for medical reasons; she only advises re: her nutritional program. As far as her posting studies, I found only this one: https://ijdrp.org/index.php/ijdrp/article/view/47  in a journal where the advisory board is Campbell, Esselstyn, Furhman, McDougall, and the like: https://ijdrp.org/index.php/ijdrp/about/editorialTeam  I'm glad that the program works for you, and you have better labs---my point is that she is not a board certified rheumatologist, trained in dealing with lupus or other rheumatological disease, and that she has not published in academic journals with double blinded reviewers. 

I'm not trying to entirely dismiss her, I'm saying "caveat emptor". I know way too many people who follow diets without also seeking proper medical care....and I've seen some of the ugly outcomes from unmanaged lupus. Before medication, five year survival rates were <50%.  It's now above 95% since they've been able to add some critical therapies.  Given that there's a Sjogren's (which she mentions above) generally runs in a pack with RA and lupus, OP needs to be seen by a qualified rheumatologist if she hasn't been in addition to doing whatever nutritional therapies she would like. 

----

If OP is trying to figure out what hurts her, but is a super taster and struggles, then maybe she could try cutting out whole classes of foods for a month, and then adding them back in.  Like, go one month without dairy and then add it back and see what happens. Go a month gluten free, then add back in.  Eggs would be the third class that I would try.  Those tend to be the big three.  Those are nice clear bright line rules, but it's not a strict AIP diet if she can't manage it. 

https://healmedelicious.com/15-easy-aip-dinner-recipes/

https://peopleschoicebeefjerky.com/blogs/news/aip-diet-recipes

 

I don’t think she’s seeing patients in person at all anymore, but she definitely orders lab tests virtually, both to show her nutrition plan is working, and to use it to adjust it for someone as needed if they need a custom plan due to organ failure or something. Those group & individual programs are not free like much of the rest of it though. And she absolutely suggests going to a rheumatologist and staying on medications.

It's simply that with many autoimmune conditions you can have disabling medical conditions for a decade before the lab work substantiates a specific diagnosis. It might be bad enough for years that a rheumatologist can’t diagnose you, but still asks you to come in annually because you have, “something autoimmune brewing.” At least that’s what happened to me. I had lupus symptoms for 10 years before a diagnosis. 

Anyway, I’ve had a couple friends try her program. Both knew pretty quickly whether it helped or not. One felt remarkably better in days. The other it didn’t help in a few weeks. One had positive ANA but not bad enough for a specific diagnosis. The one it didn’t help has disabling long covid symptoms with cardiac involvement. 
 

Bright line rules… are you quoting the bright line diet? Or is that phrase a coincidence? 

[prairiewindmomma]

13 minutes ago, Katy said:

 

Bright line rules… are you quoting the bright line diet? Or is that phrase a coincidence? 

Weird coincidence phrase....OP said she needed strict rules of what to eat versus what not to eat...that saying just "eat clean" doesn't work for her.

[Soror]

16 hours ago, Soror said:

So, isn't the lady that wrote Nutrivore the same lady that started AIP???? It looks the same it seems she's changed her stance on some things.

 

18 hours ago, dsmith said:

While I haven't done AIP yet, I did do Wahl's protocol for over a year. I had more energy and lost weight, but I can't say it helped with the active MS flare I was in the middle of when I started. It took over 2 years for that to resolve. Wahls is similar I think, but I didn't cut out nightshades. My stomach really didn't like all the meat, so after reaching out to Dr. Wahls she agreed it would be better for me to reduce meat and include legumes, which worked really well for me. Then I completely lost the desire to do special diets for awhile. My current doctor would like me to try AIP for Hashimoto's, and I see they have introduced a modified AIP that includes legumes and I think seeds, not sure. I may try that, but I did cut out wheat products again. I'm not sure if it's the gluten or a different protein I react to, but I read an article about a study done with MS patients, and they weren't reacting to gluten, but another protein. I can't remember what it was - if I remember I will link it later. I also discovered that guar gum bothers my stomach a lot, so I removed that as well as dairy. At the moment I am reading Nutrivore by Dr. Sarah Ballantyne, and trying to follow her recommendations. I've been adding a lot more fruit and veggies, eating the rainbow, legumes, etc. I would say my diet is mostly plant-based, but I love my husband's bone broth and will have that every day if it's available. I do eat some meat here and there and I have some weekends where I will eat everything, lol. I feel like crap when that happens, though. When I'm eating better, I feel better - more energy, less inflammation, less achiness, sleep better, no GERD, etc.

So, it is the same as the AIP lady.

As to my understanding, she started out with the Paleo diet - then shifted to AIP with health issues. Now, she's gone the other way and has opened up her diet. The AIP page is still up there but her current videos talk about how unhealthy her relationship with food became and how she restricted whole classes of foods based on one thing wrong with them and ignored other aspects. 

I think her new approach is healthy and balanced (far more so than most of the 'diets' out there). 

13 hours ago, prairiewindmomma said:

Scroll to the bottom of her page: https://www.goodbyelupus.com/appointments/  She states, in bold letters, that she does not see patients for medical reasons; she only advises re: her nutritional program. As far as her posting studies, I found only this one: https://ijdrp.org/index.php/ijdrp/article/view/47  in a journal where the advisory board is Campbell, Esselstyn, Furhman, McDougall, and the like: https://ijdrp.org/index.php/ijdrp/about/editorialTeam  I'm glad that the program works for you, and you have better labs---my point is that she is not a board certified rheumatologist, trained in dealing with lupus or other rheumatological disease, and that she has not published in academic journals with double blinded reviewers. 

I'm not trying to entirely dismiss her, I'm saying "caveat emptor". I know way too many people who follow diets without also seeking proper medical care....and I've seen some of the ugly outcomes from unmanaged lupus. Before medication, five year survival rates were <50%.  It's now above 95% since they've been able to add some critical therapies.  Given that there's a Sjogren's (which she mentions above) generally runs in a pack with RA and lupus, OP needs to be seen by a qualified rheumatologist if she hasn't been in addition to doing whatever nutritional therapies she would like. 

----

If OP is trying to figure out what hurts her, but is a super taster and struggles, then maybe she could try cutting out whole classes of foods for a month, and then adding them back in.  Like, go one month without dairy and then add it back and see what happens. Go a month gluten free, then add back in.  Eggs would be the third class that I would try.  Those tend to be the big three.  Those are nice clear bright line rules, but it's not a strict AIP diet if she can't manage it. 

https://healmedelicious.com/15-easy-aip-dinner-recipes/

https://peopleschoicebeefjerky.com/blogs/news/aip-diet-recipes

I agree with this approach. In the end, you have to do reintroductions anyway. The problem is by the time you do it for a while you're tired of restricting and following the rules for reintroduction is tiring and it drags out forever with so many things being eliminated. If you start doing one thing at a time you won't be going into it worn down from the elimination and can do it properly. You will also not be changing your diet so drastically so it will be easier to comply.

 

Edited June 4 by Soror

[Soror]

Fwiw here is the link of her talking about why she has made the changes she has---

https://fb.watch/suQIw4exZz/

[prairiewindmomma]

The protein in wheat some people with MS react to is ATI—amylase trypsin inhibitor. I think I spelled that right. Wheat ATI is a category, but ATI is present in all cereal products, afaik—including rice, corn, barley, millet, quinoa, buckwheat, etc. (I am not sure about oat.) It feeds the endosperm of the grain. 
 

I do think this is why, for some, going grain free does help. 
 

I also think whole grains help diversify and feed a wider array of gut microbiota while providing some key nutrients—dont be more restrictive than you need to be. There are some studies on how going GF changes your microbiota—bifido is decreased, along with B. longum and lactobacillus. Those decreases make you more prone to e coli and c-diff.

[dsmith]

4 hours ago, Soror said:

 

So, it is the same as the AIP lady.

As to my understanding, she started out with the Paleo diet - then shifted to AIP with health issues. Now, she's gone the other way and has opened up her diet. The AIP page is still up there but her current videos talk about how unhealthy her relationship with food became and how she restricted whole classes of foods based on one thing wrong with them and ignored other aspects. 

I think her new approach is healthy and balanced (far more so than most of the 'diets' out there). 

I agree with this approach. In the end, you have to do reintroductions anyway. The problem is by the time you do it for a while you're tired of restricting and following the rules for reintroduction is tiring and it drags out forever with so many things being eliminated. If you start doing one thing at a time you won't be going into it worn down from the elimination and can do it properly. You will also not be changing your diet so drastically so it will be easier to comply.

 

Yes, and I'm loving the new direction she is going in. I do see the benefit of an elimination diet, but I think there are people that get stuck in the elimination phase and don't re-introduce many foods. Others seem to be very good with the re-introductions and find out they can have a little bit of certain foods before they get symptoms or have been able to add back in a significant amount of foods. I think I will try the modified AIP recommendations and see what I find out, but I will continue following Nutrivore recommendations while doing it. I've never tried eliminating nightshades before and I suspect a few of them are problematic for me. (I would be very upset if potatoes are a problem food for me, though!) It seems that Mickey Trescott and Angie Alt at Autoimmune Wellness are the current experts in the AIP community. 

[dsmith]

2 hours ago, prairiewindmomma said:

The protein in wheat some people with MS react to is ATI—amylase trypsin inhibitor. I think I spelled that right. Wheat ATI is a category, but ATI is present in all cereal products, afaik—including rice, corn, barley, millet, quinoa, buckwheat, etc. (I am not sure about oat.) It feeds the endosperm of the grain. 
 

I do think this is why, for some, going grain free does help. 
 

I also think whole grains help diversify and feed a wider array of gut microbiota while providing some key nutrients—dont be more restrictive than you need to be. There are some studies on how going GF changes your microbiota—bifido is decreased, along with B. longum and lactobacillus. Those decreases make you more prone to e coli and c-diff.

Yes, thank you. I believe one of the articles I read mentioned that even just lowering, not completely eliminating wheat (and possibly other grains) did have positive results. I avoid wheat most of the time, but I do have some tolerance when I'm not in an active relapse. I've noticed I tolerate homemade breads better, so maybe part of my issue is various food additives. I have gone completely grain free in the past, and I had positive results as far as my weight, but I found it very difficult and depressing! Usually that went along with a low carb or paleo diet, and my gut was not happy after a while! 

Hopefully more research on ATI will be done in the future. 

[Soror]

13 hours ago, dsmith said:

Yes, and I'm loving the new direction she is going in. I do see the benefit of an elimination diet, but I think there are people that get stuck in the elimination phase and don't re-introduce many foods. Others seem to be very good with the re-introductions and find out they can have a little bit of certain foods before they get symptoms or have been able to add back in a significant amount of foods. I think I will try the modified AIP recommendations and see what I find out, but I will continue following Nutrivore recommendations while doing it. I've never tried eliminating nightshades before and I suspect a few of them are problematic for me. (I would be very upset if potatoes are a problem food for me, though!) It seems that Mickey Trescott and Angie Alt at Autoimmune Wellness are the current experts in the AIP community. 

I know I had lots of difficulty with reintroduction. I went all in with the belief that these changes would reverse my Hashimoto's. It took awhile for me to admit defeat. So, reintroduction very quickly devolved away from the protocol. 

I listened to a Podcast of Sarah yesterday morning and she was talking about the ladies that have taken over AIP. She also talked about how there have been changes making it less restrictive allowing legumes (except soy), seeds, rice and pseudograins, and ghee.

(I was deep in Paleo and then AIP- I was in that world for probably a decade so your mention really piqued my interest. I also see her new direction aligns with my own changes in beliefs.)