Q for anyone who's done Autoimmune Paleo (or similar dietary restrictions)

[LilliaT]

If you have tried the Autoimmune Protocol diet, or any other similar Paleo-type diets, how did you handle things like xylitol (which is in many dry-mouth products)?  I've been reading some AIP blogs and books and have started making changes to my diet.  But there are certain forbidden ingredients that I just don't know how to eliminate.  The big one is xylitol, which is in pretty much every product I use to manage my dry mouth -- mints, Biotene products, Xyliments, BasicBites, etc.  I'm reluctant to give these products up, even for a short time, because I understand that dental decay due to dry mouth can happen pretty rapidly.

So I guess my question is -- is it worth doing AIP if you can eliminate most, but not all, of the forbidden foods?  Or will the inclusion of xylitol (or the other sweeteners in these dry-mouth products) basically negate whatever other improvements you might feel?  (I have similar questions about some "filler" ingredients that seem hard to avoid if you're taking vitamins and other supplements.  E.g., the AIP sources advise against things like xanthan gum (which is in Salese) or magnesium stearate (which is in so many vitamins and supplements).) 

Also, I'd appreciate any suggestions or tips anyone has about starting AIP.  It's been a little rocky so far, because it's basically the complete opposite of how I've eaten my whole life:  I've never liked meat that much; I'm of Asian descent and grew up eating tons of rice; and I'm terrible about meal-planning and am not a great cook (and AIP seems to require an extraordinary amount of planning and cooking).  Also, my daughter is adamantly vegetarian, so it seems like I'll be cooking two different things for most meals. 

Cutting foods out hasn't been horrible, but -- because I haven't really figured out how to substitute enough meat, veggies, etc. -- I end up hungry constantly and am worried about losing weight.   I know it's possible to do AIP and hold down a full-time job and be a parent, but right now it seems pretty daunting.  So any tips would be greatly appreciated!

[Pete0211]

Everyone varies, but it's my belief that exclusionary diets only help you identify and then avoid food that you have allergies / issues with, to reduce any complicating factors with your ailment(s). 'Frinstince, you may find either a general paleo-ish diet or the process of exclusion / controlled reintroduction will reduce / end - GERD/heartburn/gas symptoms, improve sleep, lower blood pressure, reduce pains - or you may not.

For some people, it could very well help specifically with AI issues, especially with the general "healing" of a "leaky gut".

I tend to a paleo-ish diet, but haven't gone full exclusion, AIP or otherwise. My body does do better with less simple carbs, and higher protein / fat intakes, with plenty of veggies, and since I do like meats, seafood and veggies it allow me to eat well and plentiful throughout the day.

Just start by getting used to a paleo type of diet. Then you can start excluding things if you'd like to go down that route, especially those foods you think you may have sensitivities to already. It's probably a good idea to let your primary care physician know of your dietary change so you can work with them to monitor vitamin / mineral serum levels, so you can add necessary supplementation or add some additional foods if needed.

I tend to either make large crock pot meals (chili now that the cold is setting in), and I try to keep some quick, freezer-to-microwave items (e.g. Green Giant Steamer veggies - antioxident blend is my favorite and Gorton's Simple Bake Salmon), have frozen fish and meats on hand, and in the fridge I always have ground beef (grass fed/finished, of course) ready (quite versatile - add with salads, eat by itself with some spices, or make burgers/meatloaf/chili, etc). I also use quality meal replacement type drinks / bars for when I need quality nutrition on the run. You can also do a lot of cooking on the weekends, seperate into individual portions for the week and freeze them if necessary, too.

As to Xylitol and other sugar alcohols, it's hard to avoid those, so I don't for those things that are necessary to handle dry mouth (in my case, gums/mints and sprays - I don't worry about the content of toothpastes/mouthwashes).

[SjoGirl]

I have tried various diets for SjS and found that other than foods to which I have determined I have a sensitivity, it's best for me to eat "everything in moderation." This weekend is a good example because I overloaded with sweets, rich foods, etc. and I am paying for it.

That said, dramatically lowering intake of red meat years ago led me to be even more anemic than I already am. Not eating any carbs made me tired and a lack of salt played with other things like my heart rhythm.

No doctor, even my PCP, whom I love and who is one to suggest alternatives to meds, has not suggested going on an elimination diet. At the SjS clinic at Johns Hopkins the told me it's ok to eat sugar, just best eaten with a meal and, again, in moderation.

I agree with Lillia, talk with a doc about the potential up and downsides of certain diets. Depriving yourself of certain vitamins can lead to other issues not related to SjS.

[Sooki]

I'd say do what you can. I felt so much better on AIP that it was worth it.  I don't do bone broth, because I don't like it.  And there are foods on AIP that I don't get along with (coconut, tiger nut flour, and a few others).  And after I had been on it for over a year, I found that I could add a few things back in (nightshades, beans, and eggs), but I couldn't do them at first.  I still can't tolerate flour of any kind, even AIP-acceptable flours (too dry maybe?).

So the diet will have to be personalized.  Sarah Ballantyne has given the research behind each of the foods on the avoidance list.  But not everyone reacts to every food.

So I would say you could keep on the xylitol for awhile and after awhile maybe avoid it for 3-4 days and then eat it again and see if you feel worse. I don't think those dry mouth products have a lot in them;  some people cook with it!   Xylitol definitely doesn't agree with me, but I'm different (meant as a joke - we're all pretty "special"!)

I hope you find some combination of foods that gives you some improvement!

[Nomad]

I tried the AIP and didn't get far. It is too strict for me. I do see some value in it.
I did find some conflict with it...for example, I have never noticed the slightest issues for myself with eggs.
That being said, I do find healthy eating beneficial to my overall health and reducing of my SJS symptoms.
I have greatly reduced bread/pasta, lowered sugar, eat a LOT more vegetables, greatly  avoid junk food, stopped soda, drink a LOT of water, etc. These things have clearly been helpful for me.

When I feel my best, I stick to these types of foods as examples:
Breakfast: Green smoothie with kale, spinach, pineapple and apple.  Or Scrambled egg with lots of vegetables.
Lunch: Huge salad with lots of vegetables, small amount of grilled chicken 
Dinner: Moderate salad,  small piece of chicken or fish, side order of broccoli or other vegetable...maybe a small baked potato (now and then)
Snacks: Apple, almonds, popcorn, 1/2 avocado, celery...Greek yogurt on a rare occasion (I try to limit snacks to one or two a day)

I also either don't gain wait or lose a little depending on portion sizes when I eat like this. But, what really is great is I tend to feel better.

For dry mouth: I have found drinking LOTS of water between meals a little helpful. I also brush my teeth with Biotene toothpaste. Sometimes I use their mouthwash if absolutely necessary. I also like sugarfree lemon / honey cough drops and probably use one or two a day. Sometimes, I will chew sugar free gum for five minutes and spit it out.

[LilliaT]

Thank you so much for these responses.  I can't tell you all how much I appreciate the detailed and thoughtful advice.

Although it sounds like AIP really doesn't work for everyone, I'm going to try to do it for a while, to see if it makes any difference.  (Or at least I'm going to try to get as close to AIP as I can, aside from the things I mentioned in my original post.)  Mostly it's because I just want to feel hopeful -- to think that there's something I can do to feel better, or to prevent things from getting worse.  (Since this whole possible-Sjogren's thing began, I've cycled through denial, and acceptance, but I sometimes go backwards.  Recently I found out that my positive ANA had gone up, and my heart sank like a stone.  My reaction to this news made me realize that I've still been living in denial -- harboring this secret, foolish hope that maybe my ANA was a false positive, that my eye and mouth dryness would go away, and that maybe there was no autoimmune issue at all.) 

Nomad -- Thank you for giving examples of the kinds of food you eat.  As someone who was almost vegetarian (and, as mentioned, not a great cook), it's been hard for me to visualize how to go entire days without eating many of the foods I used to eat.  AIP is, as you said, so strict.  (I actually cried a little when I first looked at an AIP cookbook a few weeks ago.  It seems so strict, and requires SO MUCH planning and cooking.  I still don't know how people do it when they're working, raising kids, etc.)  Your approach sounds so much more reasonable. 

Sooki -- Thank you for the suggestion about how to handle things like xylitol.  That seems very manageable.  Could I ask how long you've done AIP?  And how long it was before you saw a difference?  It sounds like you were pretty good about eliminating the non-AIP foods -- I hope I can do the same. 

I cut out all grains and nightshades starting the day after Thanksgiving.  I intended to cut out even nuts, seeds, etc. (consistent with AIP) at the same time -- but I kept getting so hungry, and then grabbing something that was Paleo-but-not-AIP in desperation.  Hopefully, as I get better at this, I'll be able to make sure I'm filling up appropriately so that I don't keep making that mistake. 

It sounds dumb, but one thing that's been tricky is just the sheer volume of food required.  On Saturday, I bought and roasted what I thought was a massive amount of vegetables, thinking it would last almost a week.  But we went through it in a couple of days.  Similarly, even having added meat to almost every meal, I find I'm ravenous at bedtime.

I bought some pre-made bone broth.  It was expensive, and I don't think I should keep buying it.  But the idea of making bone broth just seems really daunting to me.

SjoGirl -- your advice is, as always, incredibly helpful.  I think that I tend toward anemia too, so maybe it's good that I'm introducing more meat into my diet (as much as it upsets my vegetarian, animal-loving daughter).  But I will be wary about restricting carbs too much.  I am doing this under the guidance of the NP at my primary care practice, which has sort of a functional medicine focus.  She was actually the one who first suggested that I try modifying my diet and working toward something like this -- though she was very gentle about it, and suggested that I start slow.  She said that it took her years to get to a true Paleo diet (and is only now starting AIP).  But I felt like, as long as I was cutting out all grains and dairy (the two restrictions which have required the biggest adjustment for me), I might as well try eliminating other items and seeing if I noticed any difference.

Pete0211 -- Thank you so much for your suggestions about meals, cooking, good back-up items to have on hand.  I ordered a bunch of frozen back-up items after I read your post.  I'm still flailing about a lot with the meal planning (which is why I keep realizing, at the end of the day, that I haven't eaten enough).  I'm hoping that, as I get more used to this, it'll just turn into a routine that I don't have to stress about anymore.  One big bonus is that this my daughter (as judgy as she is about my new meat-eating ways) has been loving the greater variety and greater quantity of vegetables I'm now cooking. 

[GgcJap]

I have tried the AI Paleo diet and from what I've read (and remember ) its not meant to be forever. You're meant to start adding foods back in (heading back towards normal Paleo diet) after 1~3 months or that there of. I was strict for one month, except xylitol(only used in the gum I chew), then I started adding back in.  I'm not a good cook and basically ate meat and veges only 3 meals a day(no snacks) and I wont lie, its hard.

     Now I only have the dryness and a little fatigue, so I cant speak for aches and pains. I didn't notice anything good about the diet, as in improved symptoms. My dryness didn't improve and my little bit of fatigue was still there. Having said that It didn't get any worse either and like youve probably heard before, everyone is different.

     As I didn't want to restrict certain groups of foods like the Paleo diet does, I have now added all foods back in dairy, nightshades etc etc and the only food I thought I might have had a reaction to was pasta. I ate it once and the next day I felt my dryness was considerably worse. Now to confirm that I should've eaten it again but it was too scary so I decided Ill try it again another time. Its not something I eat a lot of anyway so it doesn't concern me greatly.

     I would recommend giving it a try and have read it is recommend jumping in with both feet rather than trying to ease into it. Its a big change to begin with and takes a lot to get used to but its not forever, unless you find you have allergies to everything, which even for the best of us sounds almost unbelievable(but still possible). Really you have nothing to lose by trying it and everyone is different so you may find it works for you where it didn't for others. At the very worst it can do nothing.

Try to remember there's always hope and strange things(good and bad), things that Doctors cant explain happen all the time.

Theres also a lot of good Paleo/Autoimmune Paleo(AIP) websites available if you google them. Recipes, Shopping lists, Can/Cant eat food lists etc etc.

Good luck

GgcJap