Early in 2012, at age 38, I was diagnosed with primary Sjogren’s Syndrome, an incurable, inflammatory, autoimmune disease characterized by fiery joint pain, fatigue, and severely dry eyes and mouth, among other potential symptoms and complications. This diagnosis followed a much earlier diagnosis, in my early 20s, of perniosis, an autoimmune disease which causes sensitivity to the cold, and manifests as painful swelling in the fingers and toes. Not content to be a passive patient in facing these little-understood diseases, I started this blog as a way to chronicle my active participation in managing my health. I believe it’s my responsibility to be my own best health advocate, to educate myself, and to actively engage my doctors and other health care providers in finding the best answers for me.
Crafting a Personalized Anti-Inflammatory Diet: Phase I
The Strategy: During the first six months after I had been diagnosed with Sjogren’s Syndrome, I set out — with my doctor’s approval — to craft an anti-inflammatory diet that might improve how I was feeling. I started by cutting out added sugar and limiting my consumption of foods with very high concentrations of natural sugar, like dried fruit. Most nutritionists recommend that healthy, adult women eat no more than 26 grams of added sugar daily, while most Americans eat up to ten times that amount! I set myself a goal of consuming no more than 20 grams of added sugar per day. In order to achieve this goal, I also had to cut out most processed foods, which was a good idea anyway in order to avoid food additives, chemicals like bisphenol-A (BPA), and trans fats, all of which promote inflammation. In the first six months after my diagnosis, I resolved to:
- Limit added sugar intake to 20 grams per day
- Cut out almost all processed foods (although I do still buy some, such as almond milk and the occasional can of beans, e.g.)
- Cut out all baked goods made with refined flours, and limit consumption of baked goods made with wholegrain flours
- Cut out all fried foods and refined oils
- Refined oils are laden with inflammation-causing omega-6 fatty acids, so I rely on mono-unsaturated oils like olive oil, avocado oil, and grapeseed oil in most of my cooking. I avoid canola oil because it is so heavily refined that all of its health benefits have been stripped.
- Increase consumption of fresh fruits and vegetables
- I start each morning with a breakfast smoothie packed with frozen fruit and fresh greens, and try to make sure vegetables make up the biggest part of each meal
- Add more spices to meals, especially heavy-hitter anti-inflammatory spices like turmeric and ginger
- Eat only free-range, antibiotic-free, hormone-free, organically raised meat and eggs
- Since organically-raised meat is usually more expensive, I prefer to eat meat less often so I can make sure that when I do eat it, it’s the best quality I can afford.
The Results: Within the first month of changing my eating habits, I started to notice a pronounced difference in how I felt. On a scale of 1 to 10, my pain went from being in the range of 6-8 to the range of 1-3 on most days. Being in less pain on a daily basis gave me the energy and will to start being active again, so I started attending hot yoga classes, which in turn helped increase my mobility and energy. I was feeling better, sleeping better, and enjoying my life more. Best of all, my rheumatologist agreed to take me off the controversial drug he had prescribed, and to let me try managing Sjogren’s with diet and exercise, along with a few vitamin and probiotic supplements.
Crafting a Personalized Anti-Inflammatory Diet: Phase II
The Strategy: Even though I was feeling much better on my new eating plan, I still wasn’t satisfied. I felt a lot better, but I was still painfully aware that I was “sick.” The more I read about nutrition research, the more I worried that undiagnosed food sensitivities (which are very common in patients with autoimmune illnesses) might be contributing to my inflammatory conditions. Then I read Julie Daniluk’s Meals That Heal Inflammation, and decided — again, with the support of my doctor — to go on an elimination diet to identify the inflammation triggers particular to my own body. I’m not going to sugarcoat this: the elimination diet was really hard to stick with, especially because it makes going out to eat (whether at a restaurant or a friend’s house) almost impossible. However, it was so worth it. Here are the foods I eliminated from my diet:
- Wheat and other gluten-containing grains and products
- Corn and corn-based products (including cornstarch, corn syrup, xantham gum)
- Dairy
- Nightshade vegetables: tomatoes, peppers, white potatoes, eggplant (this includes not only nightshades in their whole forms, but also anything containing ground pepper or potato starch, e.g.)
The Results: The elimination diet made me feel amazing. My joint pain completely disappeared, and I experienced more sustained energy than I have felt in years. In my yoga practice, I experienced a sudden and noticeable increase in strength, stamina, and flexibility. After eight weeks, I started adding the “forbidden foods” back into my diet one at a time, recording my reactions in a food journal. The process clearly revealed a sensitivity to dairy, and a strong intolerance to gluten, which is further supported by these studies:
Journal of Gluten Sensitivity: The Connection Between Gluten Intolerance and Sjogren’s Syndrome
Now I’m living gluten and dairy-free, exercising daily, and feeling better than I could have imagined. I still have ups and downs, but I’m enjoying many more good days than bad since making these lifestyle changes, and I recover far more quickly from flare-ups than I did pre-diagnosis, which keeps me motivated. Thanks for reading my story, and I hope you’ll visit again to exchange insights and experiences with healthy eating and active, joyful living!
What IF...? Gourmet 
Thank you!…your information has been very helpful because I have Temporal Arteritis and at one point my Sed Rate(inflammation rate) was very high…I have been researching anti-inflammatory foods and trying to keep to an anti-inflammatory diet and my Sed Rate has been in the normal range so far…thank you again! (:
Mary, I am so glad to hear that following an anti-inflammatory diet has been helping you. It can be challenging to make lifestyle changes like this, but I consider it a small price for feeling healthier. Good for you for taking responsibility for your health!
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I am gonna have to bookmark this page. Came here looking to see if almond milk can be warmed up! I have been dealing with joint inflammation severely for the past 7 months. Started up as just stiffness/soreness in two of my fingers 4 years ago. Then it was the wrists and elbows. Then the shoulders. It wasn’t so often, but I got tested for nerve damage, got x-rays, etc. cause I was worried. This year it attacked the knees and ankles and I’m seriously worried. I’m glad this year we can get insurance again through my husband’s work because otherwise I would not be able to know what the heck. I did have a long distance talk with my physician (also my uncle) back in my country and he told me as soon as I listed the symptoms that it was RA. So I need to confirm his remote diagnosis as soon as I can get to a dr locally.
There have been times when I sit at the end of the day and I cannot get back up without help.Other times it’s hell to climb in or out of bed. Stairs are painful. I can’t roll over and get comfortable at night if I’m having a bad one. Or worse, short of being carried sometimes I can’t walk or hang on to anything when it hits me all at once and it’s been seriously depressing.
I have been cutting on dairy/gluten and following a list of non-inflammatory foods and try to eat those as much as I can for the past weeks, to see if that helps me out, even if losing a few pounds. Reading that it has actually helped someone with maybe worse conditions than mine, gives me hope. I’m 37 years old and frankly this is bs.
Even if I have something completely different it’s encouraging to find other people who are going through something similar with inflammation and being able to share the load is helpful. I will now browse through the site!!!
Meissa, so sorry to hear about your woes! They sound very familiar, unfortunately. I’m glad you’re taking measures to change your diet and get an accurate diagnosis. I have found food to be a powerful medicine, so I sincerely hope the changes you’ve been making will help you feel better. No matter what the ultimate diagnosis, focusing on a healthy diet can only improve your well-being, so that’s one positive. Best of luck!
Thanks Y. I went to the Dr this week and got bloodwork done. I have high inflammation levels so I will be seeing a rheumatologist hopefully in the next week. I am pretty excited about the new food possibilities! The ideas I am getting from your blog are endless. This week I’m trying the stuffed eggplants, the wild rice mushroom soup, the punkin pancakes, the roasted chickpeas, and I can’t remember what else. Stocked up on spices and different flours at the co-op. Switched my morning coffee for chai with almond milk (yum!)
I always thought doing drastic changes in eating habits was gonna be hard, but honestly it really has been a lot easier than expected, since the only place I go out to eat at is my favorite sushi place and I can take or leave most things, even though I have a sweet tooth. The trick is to focus on what I CAN eat rather on dwelling on what I am missing out on, and so far so good. (hey, I’ve lost 10 pounds!)
You’re exactly right — the only “secret” to changing your diet is to stay focused on the things you can eat and enjoy, and make the most of them. High-five for all your hard work getting healthy!
I am 40 and was diagnosed with Sjogren’s two years ago. I have been on methotrexate, Arava, plaquenil, and now cellcept. I am still not well, no matter what I do! I am trying to change my diet. Last week I cut out refined sugar, this week wheat, and am going to attempt an anti-inflammatory diet. I am desperate to find something that helps!
Hi Hannah,
Kudos to you for trying to make positive changes to your diet! Don’t be afraid to make the changes gradually to give yourself time to adjust. As I said above, I also started by cutting out refined sugar (and most processed foods) and then after several months gave up gluten. I think easing into it helped me stick with it. I was on plaquenil for almost a year, and it did absolutely nothing to help me, so — with my doctor’s permission — I went off it, and chose to focus on diet and supplements instead. I genuinely hope that dietary changes will help you as much as they have helped me. It’s not a silver bullet, and I still have ups and downs, but I have SO many more good days than bad now! I’ll be sending positive thoughts your way, and wishing you all the best.
Thank you for sharing your blog and recipes. I too was recently diagnosed with Sjogren’s and thankfully it has only affected my eyes with such severity, it has been difficult to work, drive and workout. (For some reason, working out makes my eyes even more dry and painful.)
In any event, my question to you is the 20g of added sugar. Is this 20g also include fresh fruit? Are you adding ALL sugar, or only the added stuff, like what’s in processed foods, artificial sweeteners, etc. I have been following my own eating program similar to yours as my diet pretty much consists of beans and greens with loads of fresh fruits and vegetables and very little processed foods, no meat, and occasional fish (1x/week).
I know you mentioend that you have felt much better since switching to this eating lifestyle, but has it improvied your dry eyes?
Thanks for your thoughts.
Hi Jolene,
Thank you for your comments and questions. I’m sorry to hear your eye symptoms have been such a problem. I recommend shopping around for an eye doctor if your current doctor doesn’t know much about Sjogren’s. The one pharmaceutical I do take for Sjogren’s is Restasis, an anti-inflammatory eye drop, and I have been on it for almost a year. It does seem to help. I use gel drops at night, and unpreserved saline drops as needed throughout the day. My eye doctor also recommended that I take 2,000 mg per day of fish oil supplements (for the omega-3s). I take a capsule, and I believe I have noticed a difference in the comfort of my eyes. As for the sugar in my diet, I do not count natural sugars in whole fruit, so the 20 g limit is for “added” sugar, with the caveat that I consider juice to be an added sugar, because it has no fiber or other substance to mitigate the sugar intake like whole fruit does. Your diet does sound very similar to mine, and I hope that it will keep you free of any additional symptoms for a very long time!
Thank you for all the great information. Just diagnosed a couple months ago and on a new diet. So far I have noticed more energy for sure.
What other supplements are you on?
Thank you again. Such a help reading your website.
Kathryn, I take omega-3 (fish oil), vitamin D, digestive enzymes, and a probiotic blend. I’ll add the caveat that all of these were prescribed by my health care team based on blood tests and observed deficiencies, so I am not recommending anyone go out and willy-nilly start taking a whole bunch of supplements. But do push your health care professionals to advise you on what supplements might be right for you. These have made a huge difference for me. Thanks for reading and for the encouraging words!
I just found your site after searching for anti-inflammation diet and Sjogren’s. I’ve been living with the diagnosis since 2001 and have noticed that my symptoms are more extreme right now and I’ve been sick more. I’m trying to summon the strength to prepare my own food, but as a working mom with two special needs kids, I haven’t had the energy. However, my latest bout of laryngitis has me thinking I need to find a way. I look forward to exploring your site and learning from you.
Thank you
Thanks. I’ve been gluten free for 3 weeks and almost dairy free. I do use Almond Milk, Vanilla flavored. But not much in a smoothie and occasionally on gluten free rice chex cereal. I don’t hae the official Sjogren’s diagnosis because after physical examination with no joint redness or inflammation and blood/urine test did not test positive for auto-immune the Rheumatologist does not believe I have an auto-immune or Sjogren’s. That’s great, however, I have extreme dry mouth, trouble swallowing, dry eyes, fatigue, extreme depression. Anyhow, how long before diet change helped dry mouth symptoms. Are you free of the dry mouth now? Other forums suggest Paleo but I don’t think I can manage that. I just made myself sick tonight trying gluten free quoinia macaroni with dairy free cheese. Still heaving over that. I just bawled after supper. Anyhow, hoping I can stay on this diet but it is hard. I’ve survived on everything bad, processed packaged cheap pasta which I have lived on for most of my life…
Starting your eating plan today… I suffer from gout, which runs in the male members of my family… I have it under control for most of the year… But get an attack around summer and winter. My first big attack was when I was 35, lucky as my nephew got his at 29. Usually my toe swells up and feels like ten or twenty scalpels lodged in my joint with every move extremely painful and the skin burns when touched. More recent has been a knee and thumb attack…
Hoping this diet, along with plenty of water will ward off a summer attack….
John
I wish you the best of luck, John!
Just following up, did your sicca symptoms improve on this diet? If so, how long? What about fatigue? I’m mainly gluten free, dairy free and only sugar is in the 1/2 teaspoon I put in morning 6 oz of coffee. I switching almond and coconut milk to unsweetened.. miss the sweet… need some vanilla extract if that’s allowed. I do eat more fruit now, possibly too much especially watermelon. Cannot say I’m feeling a lot better but trying. Nutritionist not a big paleo fan but recommended gluten free and 80/20 plan (80%-alkaline foods and 20%-acidic) combo. My head is still spinning but brain fog and depression not helping. Anyhow, just wondering about the dryness issues of sjogrens or if your diet mainly address joint pain.