Systemic Lupus Symptoms in Remission after Fixing Leaky Gut Syndrome by Diet Alone

Let me start out by stating the obvious, this article is not about triathlon training, racing, or equipment. On occasion I have focused on specific people in the sport but this time I’m focusing on someone much more important to me, my wife Janice. Jan, as I like to call her, was diagnosed with Systemic Lupus, an autoimmune disease, not quite three years ago. Until last November she was following Doctor’s orders on drugs and dealing with their side effects, while feeling somewhat better but still with flares of Lupus occurring, as they are called.

I’ll cut right to the good news here and say that having changed her diet (and a lot of mine too), from what I always described as “everything in moderation” to Gluten free, dairy free, no caffeine, no potatoes, rice, or nightshades, no beans or corn, her Systemic Lupus has been in remission. Yes she has a rare flare now but they are far less frequent and far less severe than they were before when she was just taking the Doctor’s prescribed medicines.

So this story will be about her journey dealing with Systemic Lupus while not pretending to be a definitive medical article on disease, medication, or diet. I’ll make general references to explain more detailed subjects, include longer definitions at the end for those interested. I strongly encourage anyone that reads this who has Systemic Lupus or any other autoimmune diseases, or knows someone else that does, where diet can and has proven to be beneficial, to use this as a stepping stone to possibly begin the healing process and return to living a “normal” lifestyle that includes daily exercise outdoors, within limitations.

And for you music fans, the recent reports about Kelly Clarkson and her weight loss which was a side effect from her new diet to correct her autoimmune health issue, and according to my wife it’s pretty much the same one she is on. So somebody most people listen to, know, or have heard of has “cured” herself (and has her family on the same plan), with diet alone. It does work! But back to Jan’s story.

Jan retired during the spring of 2015 following a final stressful year at work just as we began a five month house remodel during one of the hottest summers on record here in Santa Barbara. I continued working, leaving early each day before the contractors would arrive and returning most nights after they had left, so Jan was basically the General Contractor, dealing with the day to day problems that arouse. Not the best way to ease into retirement as stress can play an important part of autoimmune disease.

All the while Jan continued her daily routines of swimming, biking, and running, as although she isn’t racing triathlons anymore she trains like one. As the spring became a very hot summer and our living space shrunk from a two bedroom, one bath house to living in the living room with a lot of stuff in offsite storage, we both suffered with the heat. The living room faces west so lots of direct sunlight and after 3-4 weeks of intense heat the house never cooled. Now some folks would have turned on the A/C but most people here in Santa Barbara, especially those in older houses, don’t have A/C, and honestly, the thought of buying one and sticking it in a window never occurred to us. We stuck to open windows, cross through ventilation, shades to keep out the worst of the sun, and fans.

Jan would go for an early run, before the sun was up, and would come home sweating profusely, her skin feeling like it had been burned. Eventually she went to see her GP (General Practitioner), who ran a blood test and determined that she might have Systemic Lupus. He sent her to a Rheumatologist who could order more definitive tests to verify his diagnosis, and after seeing that Doctor the results were definitive for Systemic Lupus.

Now in hindsight Jan’s had other autoimmune diseases for years, decades even, like Hashimoto’s thyroiditis, Ulcerative colitis, IBS (Irritable Bowel Syndrome), Uterine Fibroids, and migraine headaches, and has been on thyroid and other IBS medications for years. For athletes in particular IBS is quite an issue requiring knowledge of where the bathrooms are along the various bike rides you go on and on the runs. It also exacerbates the morning bathroom ritual that many athletes have before races, except now it had become an everyday occurrence or bother.

But at the time of her Systemic Lupus diagnosis Jan just needed to get right, to not have burning skin when outside, pain from inflammation (another common Lupus disease side effect), and various other skin breakouts, so she went along with the Doctor’s medical plan of drugs and learned to try and deal with the disease. To continue working out she looked online for the best sunscreen, and not the cheap stuff either, we’re talking European stuff that blocks UV light and not just sunlight. To minimize the amount of sunscreen she needed to apply she purchased UPF 50 clothing to cover herself from head to foot; the stock at Coolibar immediately went up!

She was embarrassed at first to be running along the beach, now into the fall and winter seasons, early in the morning, wearing a full brim “adventure hat”, with the longish tail in the back, long sleeves and knickers if not long pants, but over time she was able to get back into a normal routine, while trying to avoid the hottest parts of the day, from around 10AM to 4PM. She continues to wear long gear into the spring and summer months even now while her Systemic Lupus is in recovery because her skin cells will still react to the direct sunlight to cause her body’s immune system to kick into high gear, attacking any “intruders” that enter the system, more on “them” in a moment.

While the seasons passed by the fall of 2017 Jan was having more problems with her IBS, painful stomach and intestinal issues, painful enough to get her GP to schedule a colonoscopy. While waiting for her appointment, dealing with increasing amounts of pain which was affecting her ability to not only train as she liked but her normal routines in life, it was time to do some more digging on her own.

At some point while all this was happening Jan began reading more about Leaky Gut Syndrome and by following the different threads of stories she found that this can cause Systemic Lupus and other autoimmune diseases that she has been dealing with for decades like Rheumatoid Arthritis, Hashimoto’s, IBS, Colitis. Leaky gut means the intestinal wall breaks down and that allows proteins to literally leak into the bloodstream. Doctor’s prefer to not use the term Leaky Gut Syndrome, preferring the more clinical term intestinal permeability, as even though the conversation on leaky gut has gotten louder, clinical studies remain inconclusive, while the anecdotal evidence is mounting.

Our immune system sees these proteins leaking out of the breaks in our intestine as intruders and attacks them causing inflammation in the body. Eventually the immune system can get confused and start attacking our vital organs, like our kidneys, lungs, heart, brain, causing severe illness. In younger people this is especially troubling as their immune systems are strong, and left unchecked they can destroy these organs. The one good thing for Jan was that being a bit older her immune system isn’t quite as strong and other than her thyroid being destroyed years ago, her other organs are so far okay.

Her research revealed that one of the possible solutions for leaky gut syndrome was a Gluten Free diet as the proteins in gluten (which has spread throughout our food chain since the rise of the industrial age), are the ones leaking out of our guts into our bloodstream that her immune system was seeing as invaders and setting out to attack and destroy them. For good and bad reasons this is how our immune system reacts, all out, 100% whenever an invader is found, so even something minor that triggers our system to go into attack mode can cause other side effects, like inflammation and pain, which are the ailments that most Doctor’s try and stop with drugs, not going after the underlying cause.

Jan continued her research and found Dr. Josh Axe who promotes a gluten free and dairy casein protein free (or modified) diet, both of which removes the proteins that are leaking out of our guts causing our immune system to go off, or as it’s called, a flare up, and bought his book, The Gut Repair Cookbook, with “130 gut-healing recipes”. She also came across Dr. Amy Myers who has an online presence based on her books, The Autoimmune Solution and The Autoimmune Solution Cookbook with its “150 recipes to prevent and reverse the full spectrum of inflammatory symptoms and diseases.” She ordered these books and the process started that would change her life.

Jan also started working with a friend of ours who is a Clinical Nutritionist, Chris Latham, to check in to see what Jan was taking and how things were working out. She concurred with Jan’s decision to modify her diet to deal with the leaky gut, her only recommendation was to add a few supplements (Glutamine, fish oil, digestive enzymes, and Vitamin D), especially as she was just starting to change her diet and could be deficient.

Jan was also trying to isolate the trigger for her flares and realized that heat, sunlight, and even reflected light into a bright room was causing her skin cells to feel like she was burning, like a bad sunburn. This in fact triggered her immune system and brought out pain and inflammation. You can see where the confusion lies in the non-diagnosis during our house remodel as there was a lot of stress, the over hot living condition, and the training during the hot days, which we both thought were something that would go away when the remodel was done and summer turned to fall. Again, we saw the environmental issues as the cause, not the internal issues caused by diet and a leaky gut. And since she has been dealing with health issues for literally decades, it wasn’t until she learned more about the leaky gut syndrome that she was able to link them all together. It wasn’t that she had five or six different things wrong with her, each needing a different remedy or drug, but that there was one underlying issue, a diet that was poisoning her body.

Now I wish I could say that going from our “normal” healthy American diet to a gluten free, dairy free, and no caffeine diet was easy, but of course it isn’t. People are always reluctant to change when it requires an increased level of effort to what they could normally do. Luckily we only eat out maybe once a week and generally avoid fast food restaurants as there are so many other good alternatives, so the problem became one of finding good tasting gluten free food and avoiding dairy cow products as the casein protein is a real issue.

And in case you’re not sure what kind of food that means you have to avoid, let’s start with bread, pizza dough, pastries, cereal, and beer all that contain gluten. Oh and many other household foods also contain gluten today as it’s a nice “binding” agent, so it’s also included in tomato sauces and many other off the shelf items. Did I mention night shade vegetables yet? Many Doctors recommend removing these from your diet as well, so add potatoes, eggplant, tomatoes, beans, rice, corn and a few others to the list of do-not-eat items.

Don’t forget the dairy free part too, as the proteins in most cow milk are also part of the dietary food problem. Luckily Jan doesn’t drink much milk, and by removing cereal from the list she was able to substitute almond milk for her decaffeinated lattes she drinks, with imported from Italy decaffeinated espresso beans. And cheese and yogurt? Substitute goat milk yogurt and goat milk cheese and you’re good to go, while for me, who still eats cereal most mornings before work, I switched over to A2 milk which is from a different breed of cow that has different proteins in it. Since I used to drink milk with lunch every day and sometimes with dinner, I decided to just substitute water for milk there and have cut my consumption by 75% or more, even though I do not suffer from the same ailments, it just made sense to remove something that potentially doing damage to my system that it has to fight off, while not having the drastic side effects of my wife.

So after saying all that, the things you shouldn’t be eating or drinking, and having read more about what she should be eating and drinking to help her gut heal and remain healthy, here’s a typical days food intake.

  • First thing in the morning, turmeric ginger tea with lemon, made by slicing fresh turmeric and ginger, which she makes in large batches to last a week or so
  • Breakfast, goat milk yogurt with fresh fruit and honey
  • Mid-morning, a cup of bone broth
  • Lunch, a healthy organic vegetable salad with a healthy dressing, no croutons or cow’s milk cheese
  • Afternoon snack, fruit or dark chocolate covered dried fruits
  • Dinner, organic grass fed beef or free range chickens, non-GMO fed, no rice or potatoes, sweet potatoes or other organic vegetables, and/or gluten free pasta, which is made from rice flour which she seems able to tolerate, even though rice is a list of foods not to eat

I’m sure you’ll agree it’s anything but typical for most of us, but when you consider that Jan has removed almost all the medications that she was taking and is feeling 100% better as a result, you have to think about how much pain and discomfort you might be in before you too would change your diet and eating habits so drastically. The only medication she continues to take is for Lupus, and she has cut the dosage to ¼ of the Doctor’s recommendation without issue, and for Thyroid which is a lifetime medication.

We have seen documentaries, again, more anecdotal information, about people whose ailments are so debilitating that they can’t function normally, taking drugs to remove the pain that make them unable to even get out and drive a car, or with their bodies so inflamed that they can’t get up from a chair without the use of a walker and no longer venture outside into the fresh air, and even they have been “cured” by this kind of diet. Don’t forget that these same people have been dealing with the side effects of their drugs or over time have found that the drugs lose their effectiveness, as is common with drugs prescribed for autoimmune diseases, so they wind up with a stronger drug like steroids which has even more negative side effects, so is that the way to live?

So you have to ask yourself, if you’re dealing with Leaky Gut Syndrome or the host of autoimmune diseases that can come from it, when do you draw the line on letting your ailments overtake your life and how much effort is too much effort if there’s a chance that you could undo the effects by changing your diet?

Of course with any dramatic change in diet and our “normal” eating habits, eating out became a problem until we found more restaurants that have Gluten Free (GF) items on their menus and flour free desserts, so that a salad and no bread wasn’t her only option for a nice meal. And then realize that your typical neighborhood grocery store is also slightly behind in providing an expansive line of GF products, although we already see they are improving, while all the health food stores have a much better variety, albeit at slightly increased prices. Can you say Whole Paycheck?

But again, we’re talking about not taking and paying for multiple daily medications that over time lose their effectiveness, versus an increase in your monthly food budget to get to the root of the problem, as well as less visits to your Doctor’s office for further checkups. One side note here is that neither Jan’s GP or Rheumatologist was on board with her decision to try and use diet to improve her condition, following the standard line of thought that modern chemistry and drugs were the better solution. She hasn’t seen her GP since she began this process, some six months now, and boy will he be surprised to see how much she has improved, her weight loss, how she has regained her strength and ability to work out as before, and how she has removed virtually all the new medications that had been prescribed. Hopefully they will learn something from this, and by reading this, hopefully you all will too.

I’ll leave you with one final note on Jan’s progress. On Sundays during the summer there’s a local swim group that does an open water ocean swim starting at 11:30, about the worst time of the day for Jan to be out and about exercising. I’ll give you that today was overcast, but we joined them today and swam at least one mile and then we both got out and put on our running gear for a short run, all without issue or negative side effects. Last year this would have been either unthinkable or would have put her into a high state of stress, causing residual side effects for several days. But not today, and all it took was the positive action to retake control of her life by changing her diet.

I hope you read that and think if she can do it, so can I!

Definitions

I’m extracting these from WebMD purely as background and for a brief overview, but your results will vary at different sources, so don’t just trust one source, including one of my own favorites, Wikipedia, whose technical articles I tend to believe, but their medical articles not so much.

Colitis – Colitis is a type of “inflammatory” bowel disease that can cause pain, inflammation, diarrhea, and rectal bleeding. Diagnosing colitis may include tests such as a colonoscopy, barium enema, or stool samples. Treatments range from over-the-counter medications to surgery.

Hashimoto’s Thyroiditis – Hashimoto’s thyroiditis is an inherited thyroid disorder in which the body’s “immune cells mistakenly attack” the thyroid gland. This attack damages thyroid cells and interferes with the gland’s ability to produce thyroid hormone. Thyroid hormone plays a crucial role in the health of nearly every cell in your body. Hashimoto’s thyroiditis is the most common cause of an underactive thyroid gland (hypothyroidism) in the United States. It is also the most common type of thyroid disease diagnosed. Women are seven times more likely to develop Hashimoto’s thyroiditis than men.

IBS – Irritable bowel syndrome or IBS affects mostly women. Causes are unknown. IBS symptoms include diarrhea, constipation, and abdominal cramps. IBS treatments include diet and lifestyle changes and medications.

Intestinal Permeability – A possible cause of leaky gut is increased intestinal permeability or intestinal hyper permeability.

Leaky Gut Syndrome – “Leaky gut syndrome” is said to have symptoms including bloating, gas, cramps, food sensitivities, and aches and pains. But it’s something of a medical mystery. “From an MD’s standpoint, it’s a very gray area,” says gastroenterologist Donald Kirby, MD, director of the Center for Human Nutrition at the Cleveland Clinic. “Physicians don’t know enough about the gut, which is our biggest immune system organ.”

“Leaky gut syndrome” isn’t a diagnosis taught in medical school. Instead, “leaky gut really means you’ve got a diagnosis that still needs to be made,” Kirby says. “You hope that your doctor is a good-enough Sherlock Holmes, but sometimes it is very hard to make a diagnosis.”

“We don’t know a lot but we know that it exists,” says Linda A. Lee, MD, a gastroenterologist and director of the Johns Hopkins Integrative Medicine and Digestive Center. “In the absence of evidence, we don’t know what it means or what therapies can directly address it.”

Lupus – Lupus, an autoimmune disease, happens when the immune system attacks its tissues, causing inflammation, swelling, pain, and damage. Lupus symptoms include fatigue, joint pain, fever, and a lupus rash.

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