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“It may take a little time to get where you want to be, but if you pause and think for a moment, you will notice that you are no longer where you were. Do not stop—keep going.”
~ Rodolfo Costa.
Reversing Sjogren's Syndrome
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 conditions who are ready to try dietary healing?
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.
You can follow Angela's journey on her blog: Life is hard, but….
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