“I believe absolutely that it is in sharing the most vulnerable aspects of our journeys that we support each other to find grace and strength and healing during equally challenging times.”
~ Baden Lashkov
Living a Resilient Autoimmune Life
Sjogren’s syndrome is an autoimmune condition that affects the body’s moisture-producing glands. The most common symptoms are dry eyes and mouth, which may not sound like a big deal if you haven’t experienced them. The dryness is extreme, and it can also affect moisture throughout the body: the skin, joints, organs, blood vessels, and nervous system. Because the symptoms are so varied, it takes an average of 5 years to get an accurate diagnosis. By the time Angela Gross was diagnosed, she was so disabled, she could no longer care for her children. Now, after 3 years on a ketogenic paleo diet, her symptoms are 85% gone, and she’s been able to reclaim her life.
What were your first symptoms? When did you learn what it was?
After having Epstien-Barr virus in college, I feel like I never fully recovered. Several months later, I slept under a ceiling fan and woke with my eyes so dry I cold barely open them. For years, I ignored symptoms of dry eyes, sore joints, fatigue and brain fog. It wasn’t until I had my second child that I really knew something was wrong. I could no longer take care of my children. After spending almost a year visiting different doctors, I finally got the diagnosis of Sjogren’s syndrome. I was told just to use eye drops, and diet would have nothing to do with my symptoms. By this time I was already dairy and gluten-free.
Can you describe what it was like for you, when your condition was at its worst?
When I was at my worst I was incredibly fatigued, moody and depressed. My eyes were so dry I was using eye drops every hour and drinking constantly to keep my mouth from being too dry. Also, sex was painful because of extreme dryness. I was so sick that I had to go live with my Mom.
What treatment methods did you try before dietary intervention – conventional or alternative?
Before making any dietary changes or any other interventions, I had one doctor put me on antidepressants because she thought I had postpartum depression. They only made me feel worse. I did have another doctor put me on Armour Thyroid which helped a little. Knowing what I know now about the body, I think my thyroid crashed years ago and thus threw all my other systems out of balance.
Which healing diet(s) did you choose? How fast did you see results?
My healing diet has been a process. During the beginning of my journey, my Mom’s husband was doing the SCD diet. I felt it was too restrictive, which now makes me laugh. I started out dairy-free, then went gluten-free. When I went to live with my Mom, I was so desperate that I was willing to try anything, so I went on the SCD diet for several months. I felt better but knew I needed something more. After getting a stool test back revealing a huge amount of yeast, I cut out fruits and all sugars. It’s been a process, but for almost three years I’ve followed a ketogenic paleo diet, in an effort to keep the yeast under control.
Once I cut out dairy and wheat, I saw an almost immediate difference in my moods. When I cut out all grains, I noticed a big difference in digestion. Within six months of cutting out all sugars, joint pain started dissipating, moods evened out, dryness decreased, and my acne improved. Currently, all of my symptoms are controlled through diet and anti-fungals. It has been a process, and at times I have to look back to see how far I’ve come.
How did you learn about a ketogenic diet? Do you test ketones? Have you had any negative effects from doing it long-term, or is it improving your health every year?
I ended up doing a ketogenic diet by accident. I kept cutting foods out that were causing yeast symptoms, and before long, I realized that I wasn’t eating very many carbs, so I started learning how to survive on a low carb diet (more fats). It was then I realized I was actually doing a ketogenic diet. I did test ketones for a little while. There is really not a specific protocol I follow. I just know that the yeast returns when I eat fruit or carbs. Just in the last 6 months have I really started to notice negative effects. If I workout too hard, its difficult to recover. I also feel that balancing my thyroid has become trickier from lack of carbs. Lastly, I recently began gaining weight which I know can happen when carbs have been too low for too long. I really hope to be able to add more starchy vegetables soon.
What symptoms still remain?
The symptoms that remain are minor fatigue, eye dryness, muscle fatigue and sore joints. They still come and go but are SO much less than they were.
What other areas of your health improved simultaneously?
My mental health has greatly improved. I had battled depression since high school, and now it’s rarely an issue. My moods and hormones have balanced out with relatively little supplemental help. Joint pain is 90-95% gone. My digestion is almost perfect. In so many ways I feel normal again.
What areas feel immune to the effect of diet?
Although diet has helped tremendously in conquering my yeast/candida issues, I have needed to supplement with copious amounts of pharmaceutical and herbal anti-fungals. And it’s been three years already. I’m definitely ready to be done with this aspect of healing.
What other things do you do outside of diet to support your healing?
One thing I have learned on this journey is self-care is huge. As a massage therapist, I know the benefits of and get massages on a monthly basis. I have tried acupuncture and found it effective with regulating sleep. Exercise is a huge component, even if it is just going for a walk. My husband and I used to go for a walk every evening, even if I was exhausted. Exercise helps me mentally and also helps with regulating hormones. Some days I do a HIIT workout, other days I do yoga or go for a walk. Whatever it is, I make sure to do something for at least 30 minutes 5 days a week.
I also take a fair amount of supplements that are constantly changing. Throughout my journey, I have seen a couple of doctors that have been helpful in getting me on the right supplements, but now I mainly do my own research. Some weeks I feel like a guinea pig in trying to figure out what helps, what hurts and what doesn’t do anything. I always take probiotics, digestive enzymes and fish oil. I rotate natural anti-fungals, take high dose iodine on a pulsed rotation, and take a mineral supplement. I’ve been slacking on making my own bone broth, so I take gelatin and other gut healing supplements. I just started taking a soy free Phosphatidylserine supplement, and in a couple of weeks it has almost completely wiped out any remaining brain fog.
Are you on any over the counter or prescription medication now?
The only prescription drugs I take are Armour Thyroid (which has been drastically reduced over the years) and LDN (low-dose naltrexone).
How strict were/are you on the dietary protocol? Any “cheats”?
In the beginning, I would occasionally cheat if there was a special event or it was that time of the month. Over time, I learned that it wasn’t worth how I felt the next day. And since I finally gave up coffee (only about 4 months ago), almost all my cravings have gone.
Do you intend to do this diet forever, or do you hope to wean yourself off it eventually?
My intention is to not do this diet forever. I think I will always continue to eat paleo, but would love to be able to add back in fruit and more starchy vegetables. I would love to be able to “cheat” every now and then with no consequences. I don’t think I will ever do gluten or dairy again. And I know I will only eat real foods.
What were/are the challenges for you in sticking to the diet?
The main challenges are traveling and holidays. My diet is so restrictive that almost everything has to be cooked at home. The financial aspect of buying real food adds up, but it has been worth it, and my medical bills have decreased.
Who supports you in your healing journey?
The answer to this question is a longer journey than my health journey. Getting sick has been hard on our marriage. I think its hard for the person who is not sick to truly understand what you’re going through. You look normal, you don’t have cancer, yet somehow your body doesn’t work like it did before. My husband was less than supportive at the beginning of this journey, but is now for the most part on board. I have several great friends who have been through the autoimmune experience. First is my friend Debbie. She is, for the most part, on the other end of it, but still has bad days. She’s the one I text when I’m having a bad day or stuck with a symptom. We pray a lot for each other. My other friend is Evelyn. She has been helpful with encouragement. She is on the other side of healing, and she’s the one I go to when I need hope. And last, I should mention my friend Carrie who is also a nutritional therapy practitioner. She helped tremendously with troubleshooting my symptoms. She’s become a good friend and mentor. I have numerous other friends that have helped, but I find that especially during the hard times, the ones who have been through it are invaluable. I am thankful to God for placing people in my life to be supportive.
What advice would you give to people with autoimmune disease who are just starting to consider diet and lifestyle changes?
Go for it!! But don’t feel like you have to do it all overnight. I took almost two years to get to how I eat today. Seek out others who can help. If you don’t have anyone close to you, there are so many blogs out there to help out. I will be be starting my own blog hopefully at the end of this month. Don’t be hard on yourself if you mess up; just keep moving forward. And it’s also important to keep your sense of humor.
Other Healing Stories
This is part of a series of autoimmune success stories. Click here to see the full list. They are also a regular feature of my podcast: Phoenix Helix.
Thank you for featuring Sjogrens. It is so common, yet so dismissed as being a “nuisance” sicca disease when in fact it is nearly always systemic, with at least 10% of people dying prematurely of it.
I also tried AIP, but found I couldn’t handle the starches. I’d always felt good eating low-carb paleo-ish, no grains/dairy/sugar. I wonder if this has to do with propensity for yeast overgrowth due to oral/other dryness. I hope someone comes up with tweaks of AIP for Sjogrens! We need a Terry Wahls/Sarah Ballantyne for Sjogrens.
In the meantime, anyone who is struggling with Sjogrens or with getting a Sjogrens diagnosis, please see this resource. It’s written by an MD with Sjogrens who actually teaches medical professionals about Sjogrens. On her website, she gathers info on the common and less common symptoms, and describes how to advocate for yourself to get a diagnosis (you don’t need all the antibodies!), and links out to important clinical practice guidelines that many doctors (and even rheumatologists) aren’t aware of. SjogrensAdvocate.com
There isn’t dietary info there, but there are some mentions of diet with respect to the dysautonomia that can arise in Sjogrens, which some researchers say can be addressed, in part, through treating MCAS (mast cell activation syndrome).
Thank you again for this blog and website!
Thanks for sharing your experience, Kate.
Thank you Angela and Eileen for your encouragement. It helps.
In 2015, I took my husband to the ER with a blood sugar level of 601; diagnosis of Type II Diabetes. At the same time, I was having gall bladder issues and it had to be removed. He sulked for a few weeks, started researching non-pharmaceutical was to control/reverse his insulin resistance. Knowing how hard it was to eat a particular way all on your own, I joined him in the change – Paleo/Ketogenic. It wasn’t easy, but boy did we feel better. I sit here today waiting for my “official” diagnosis of Sjogren’s Syndrome, reading your blog, and thanking God for my husband’s illness. I realized today how much worse I could feel had he not been “given” Diabetes and been so resilient in making the dietary changes needed. We live in an area where quality physicians are few and far between, but I have found (because a dear friend has Lupus) a fantastic rheumatologist my regular doctor (shout out to her, too!) sent me to see. I’d love to find a functional medicine physician, but that will come in due time. Thank you for sharing your story and helping me see that God has a purpose for everything that happens in our lives.
Cassie, what a beautiful comment. It’s so hard to see the blessings in times of crisis, but with hindsight the gifts become more clear. I feel the same way. Wishing you and your husband wellness in every way! Would you consider your rheumatologist paleo-friendly? If yes, I keep a list of those for referrals and would love to have their name and location, if you don’t mind sharing.
Cassie, Thank you so much for sharing your story and for your sweet comments. I am so glad to hear that diet changes helped both you and your husband. Deuteronomy 31:8 is a verse that God has constantly put on my heart “The LORD himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged.”-Deuteronomy 31:8. He has known all along that you would go through this journey. He set diet and doctors before you and he will continue to do so even with a new diagnosis. I am also glad that you have a friend(s) who understand dealing with health issues. That alone can be better than any doctor. Blessings of health to you and your family
Very thankful for a success story on sjrogens, I’ve needed the encouragement that diet can help. I’m seeing a functional medicine doc and on the AIP candida diet for gut issues and hopefully this will help my inflammation. I’ve been praying and searching looking for a success atory, thank you Angela for sharing. How are you doing on the journey now?
Are you saying that you have not seen that dietary changes help with Sjogrens?! I have started an elimination diet and my functional medicine Dr just eliminated all grains and most fruit. Is this a big waste of time for Sjogrens? And big waste of money for me? And why would Sjogrens people be any different?
Jan, Mickey was saying the opposite – that she was excited to see a Sjogren’s success story and would be sharing it with people like you who wondered whether an elimination diet might be helpful. Don’t give up before you start! It is not a waste of time or money. Welcome to the healing diet community, and we’re all sending healing wishes your way.
Angela, I’ve searched the web for stories of AIP helping with Sjogren’s and yours is the only one I’ve found. It gives me hope. I’ve had a pretty severe case of RA for 16+ years and I believe a mild case of Sjogren’s. I started easing into AIP in January 2016 and after being on AIP for several weeks, the Sjogren’s has become much worse, so much so that I rarely get decent sleep. Last thing I expected! I am sticking with AIP for now and hope for improvement. I wish you continued success.
ciao Susan, your story is very similar to mine. i do the AIP since june 2015 and had some very nice improvements with my arthritis. but like you i wonder if the sjogren is improving at all. i could also not find any evidence . i was on the Sjogrens World Forums and nobody knows about a connection of diet and sjogren. right now i am losing my sense of smell/taste – and that is hard. i went back and leave reintroduced food out – to see if the smell comes back. i hope you are doing better – wishing you moist nights
Now this is interesting.
Tried keto twice and 2nd time recently, felt great, dont ever remember feeling that good, only a month in (cutting carbs before). I stopped 2nd time cause ate some bananas, hadnt done shopping yet. This led onto a carb crazy binge which now im on my 5th~ day.
I planned on getting back on it, but this time to take magnesium supplements for sleep, the insomnia, if can call it that was annoying at best, confusing at worst.
From 12 hours sleep for years to 4 and feeling fine.
I read up on sjorgren today and see a lot of symptoms, also turn 30 in a couple of months, which is the start of the age range for rheumatoid arthritis (apparently linked with sjorgren), which i found amusing that I turn 30 in a few months. My grandmother has rheumatoid arthritis as does her siblings and tooth decay is strangely common in both sides of family.
I haven’t been tested for sjorgren yet, but I’m really glad I’ve read this now. Im going to be pushing through the keto struggles moreso now and with more motivation, so thank you so much for this post! 🙂
I am so so glad I found this blog. I have all the symptoms of Sjogren’s syndrome. Since childhood I have dry, inflamed and festering eyes. I am sensitive to artificial light. I also have a dry mouth last 10 years. My saliva is festering. I’m a teacher and still drink water at talking. It’s very frustrating when you are still spread it on the lips balm. My surroundings is not a grasp. Two months observe the Paleo diet. I am pleased that I have this blog to find someone who Paleo diet has helped with Sjogren’s syndrome. I wish you good health and enjoyment of life. Thank you for your understanding for my English.
Thanks for writing, Jozefina. I hope the paleo diet helps you as it helped Angela. Wishing you wellness in every way!
Thank you, you’re very kind.
Angela, I haven’t been diagnosed with Sjogrens but I have all the symptoms except for the confirming ANA blood and urine positive labs. Rheumatologist ruled out auto-immune based on physical exam, blood/urine labs and no redness or joint inflammation. However dry eyes, dry mouth, difficulty swallowing, dry mouth is the worse part. This all transpired since January 1, 2015. My depression is horrific too and med’s aren’t helping. And as you know, most med’s cause dry mouth. Just fixed Ancient Harvest Gluten Free Macaroni and Go Veggies Shredded Cheddar and I am still heaving. It’s bad enough battling the dry mouth but the food making you want to puke it up. Just sat here and bawled. I, too, love Jesus, yet but my faith is shaken as my will to press on is gone. I just don’t want to wake up most days. I’m been on gluten free and dairy free for 4 weeks tomorrow. I cannot say I feel any better and the dryness isn’t any better. Although after starting bio-identical low dose HRT the vaginal dryness is almost gone now. Anyhow, you are an inspiration but not sure anything will inspire me. I’m just so weary and tired.
PJ, my heart breaks for you. In another comment you mentioned that you went off your anti-depressants because you didn’t like the side effects. I think it’s time you reconsider that decision. It sounds to me like your depression is affecting everything, even your will do live. There’s a time and a place for medications, and many people find a combination of medication + diet is what they need, at least in the beginning. Please talk to your doctor. Wishing you hope.
PJ, Thanks for reaching out. I am so sorry to hear of you having such a hard time. I too reached a point where I didn’t think I could go on and Jesus and His mercy picked me up and has carried me through many years. I would love to discuss your situation more in depth. Please contact me at [email protected]. Praying for relief and for God’s mercies to rain down on you.
I can relate, i feel like this right now. I have all symptoms but no diagnosis. My faith is very weary. I see this post is about 7 years ago. Is there an update? how are you doing?
Thanks for sharing your story and for being so vulnerable and open about the struggles you’ve gone through. As someone who went undiagnosed for 20 years I can understand your willingness to try anything to figure out what’s wrong. So exciting to hear how you’re seeing results from diet and hope that you’ll continue to see healing.
Bethany, thank you. 20 years is a long time to suffer and know that something actually is wrong. I hope more doctors are becoming aware of the growing numbers of those with autoimmune diseases. Hope you have found healing. Blessings.
It is so inspiring to read such an honest, down-to-earth account of what going through a healing process is like. I totally know what you mean about feeling like a guinea pig as you test out a bunch of supplements and dietary changes to discover what works! So glad to hear about all of your progress and wishing you the best as you continue to heal!
It’s so true how many people suffer in silence and how many are reluctant to make lifestyle changes in order to help heal themselves. Thank you for you kind words.
Hi Angela – thanks for sharing. It’s amazing to me how many people suffer autoimmune issues in silence. And, just how powerful lifestyle changes – not just diet – can be in mitigating symptoms.
I’m so pleased you are seeing such great results. Cheers from Sydeny 🙂
It’s so true how many people suffer in silence and how many are reluctant to make lifestyle changes in order to help heal themselves. Thank you for you kind words.
Hi I wondered how you are doing? in particular have you stayed off caffeine? thank you
Thank you for sharing your story, Angela. Before I was diagnosed with lupus, my doctor had Sjoren’s on my list of possibilities because of my chronic dry eyes and mouth. I know what it’s like to suffer from these symptoms. It’s no fun, that’s for sure. I’m so glad you’re feeling better. It’s so important that we bring awareness to our autoimmune diseases and the importance of proper diet. You bring hope to many who are still suffering. Keep up the good fight.
Thank you Mo. I hope you have been able to find relief and renewel through diet and a good doctor. May you continue to find healing.
Angela
So many parts of your story remind me of my own – the symptoms, doctor experiences, exercise. We even take the same Rx meds and have the same cravings after drinking coffee! It is so comforting to know that you are able to manage all that plus a beautiful family. Congratulations on how far you have come and I hope you are able to enjoy everything in life you have ever wanted (hey, we should all get to do that at least once and not feel bad, right?) including those starchy carbs and coffee someday soon! xo
Thank you so much for your sweet encouraging words. Blessings to you on your continued healing journey.
Exciting to hear how a ketogenic diet can be so successful. I think it is really important to share these stories as carbohydrate intake is being so emphasized in the paleo community. Ketogenic diets (while not for everyone) can make a huge difference in certain situations. I also really feel for you about your husband’s role in your healing. It was very hard for my husband to understand what I was going through when I was really sick and he often encouraged me to eat “just a bit” of foods that were “off-limits.” I hope your husband continues to support you more as you improve your health (as mine does… now he doesn’t let me have even a bite of rice!)
Thanks so much for sharing!
Thanks for sharing part of your story. Glad to hear you are continuing to heal.
Angela,
Thank you for sharing your story–I’ve yet to come across someone with Sjoren’s who has benefited from dietary changes (and I get asked all the time!). Thank you for sharing with the community, and wishing you continued success on your journey!
Mickey
Thank you Mickey for all that you do for the world of autoimmune diseases. And yes I can happily testify that diet helps with Sjogrens.
Angela, when i read Sjogren i had to read your story. Arthritis and Sjogren made me change my diet. but i have never read about someone else trying the AIP – and you are successful . how wonderful. thank you so much for sharing your story, i will follow your blog!
I had never heard of Sjogren’s syndrome before, thank you for sharing your story and raising awareness of it, Angela. Agree with the importance of moving forward and not letting setbacks pull us down. Our immune systems are already hard on us, we don’t need to add to that 🙂 Take care!
Dora thank you. Many days the mental aspect of autoimmunity is the hardest part, finding the joy in the every day is key. Blessings.
I love a success story and yours is a great one Angela. I’m so pleased you have found the way to better health and whilst I don’t know much about Sjogren’s, I do know all about the dreaded yeasts and what a nightmare they are to live with. With the help of GAPS my Candida level came down from 26/30 to 19/30 in six months, when I incorporated the AIP it came down to 10/30. Really goes to show how powerful food is.
I imagine your family must be thrilled to ‘have you back again’! Best wishes.
So glad to hear that diet has helped you so much. Thank you for your sweet comments.
Thank you for sharing your journey and teaching us a bit about your experience with Sjogrens. While I’ve heard of it before, I admit I didn’t know too much about it. It is interesting how everyone’s road to recovery has similarities, but no path is exactly the same. I hope you’re able to add some starches back in eventually! Be well. <3
Your welcome Erin. I had never heard of it until I got diagnosed with it. 🙂 Blessings to you on your healing journey.
I do not have Sjogren’s Syndrome but I can relate to a lot of what you have been through. I am a Hashimoto girl. I tried the ketogenic diet for a while and didn’t do well on it. I need some carbs to function well. And don’t even consider exercise on keto! I find your story very inspiring and I admire your courage. Healing is a process that you have to go through alone (even if you have the support of a spouse or friends). Only you can do it and it takes a lot of commitment and determination. I am so glad to read that you are managing your symptoms and that you can live your life again. Thank you so much for sharing your story 🙂
Thank you Sophie for your kind words. Glad to hear you have found some relief from Hashimoto’s
What a journey! It is so much work, but I think so much less work than being sick. Thanks so much for sharing!! I have a friend with Sjogrens. I need to share this with her!
So true Mary. It’s what makes all the work worth it. Blessings to you and your friend.
Thank you Janet.
Thank you, Angela, for sharing your story. It helps re-emphasize to me just how important diet is, and while I would not wish this kind of suffering on anyone, to also know that I am not alone in my journey. May you be blessed with a full recovery.