Bing defines catalyst as a
stimulus to change. And SSc has definitely been that for me. Before receiving my diagnosis I was not being kind to my body. Barely functioning on 5-6 hours of sleep. Terrible diet. Loads and loads of unmanageable stress. But when I was told SSc would not be curable, or even treatable, I began to do my own research. You see, I have a history of doctors telling me one thing, when the opposite may be true. It isn't that I don't trust them... but I trust my own resolve to see something brought into alignment far more than I trust their statistical data. And in a way, SSc is allowing me to be more healthy than I have been in a long time.
My research brought me to pro-inflammatory cytokines and their role in chronic disease. And specifically interleukin-6 (IL-6), a nasty pro-inflammatory cytokine that is elevated in many chronic illnesses, and "may play an important role in fibroblast activation in the SSc lesion". (In other words, the cells that stimulate collagen production and fibrosis.) The common theme of what I have read from a number of sources (just google IL-6 and Systemic Sclerosis) seems to indicate that higher levels of IL-6 are associated with more severe skin and lung involvement. (Although there are a number of other cytokines that are found at higher levels in SSc, I will choose to focus on IL-6 for this post, and address the others at another time.)
Abstract
Systemic sclerosis (SSc) is an autoimmune connective tissue disease of unknown etiology in which aberrant fibroblast function results in fibrosis of the skin and internal organs. A distinguishing feature of dermal fibroblasts cultured from SSc lesions is that they produce constitutively, i.e., without exogenous stimulation, as much as 30-fold more interleukin-6 (IL-6) than do normal fibroblasts. The present study indicates that the mechanism of constitutive IL-6 secretion involves the accumulation of IL-6 mRNA in affected SSc fibroblasts, mediated by the constitutive binding of nuclear factors to the IL-6 promoter. DNA-protein complexes formed using nuclear extracts of constitutively expressing cells are distinct from those using extracts of normal cells, with or without exogenous stimulation of IL-6; thus, the mechanisms which regulate constitutive and inducible IL-6 gene expression are apparently distinct. The data also demonstrate that dermal fibroblasts respond very rapidly to IL-6 by increasing expression of the IL-6 gene, thus suggesting a mechanism for the establishment and/or persistence of constitutive expression. The constitutive secretion of IL-6 may play an important role in the perpetuation of the local immune dysregulation and fibroblast activation in the SSc lesion.
Did you catch that?
"as much as 30-fold more interleukin-6 (IL-6) than do normal fibroblasts"
"dermal fibroblasts respond very rapidly to IL-6 by increasing expression of the IL-6 gene"
"secretion of IL-6 may play an important role in the perpetuation of the local immune dysregulation and fibroblast activation in the SSc lesion"
That's intense! But it is also something to be excited about. Did you know that it is possible to lower your own serum IL-6 levels?!? It is!
- A fish oil supplement high in DHA, low in EPA, a great source of Omega-3, suppresses IL-6 by up to 90%. Omega-3 also promotes smooth and soft skin. My doctor recommended krill oil. It is small, therefore easy to swallow, doesn't have a terrible odor, and has the least amount of contaminants.
- Sleep deprivation elevates IL-6, therefore it is recommended to receive 8-9 hours sleep.
- Blueberries, a powerful antioxidant, reduce levels of IL-6. A cup of frozen blueberries every day is recommended. (I am currently looking into whether or not a decent blueberry supplement is available.)
- Stress management is key, as stress increases IL-6. However, those who practice yoga have decreased levels of pro-inflammatory cytokines in their blood. Also, deep breathing meditation is a great way to reduce stress. But really, any activity that you find peaceful and relaxing will work. Though something involving a good connective tissue stretch wouldn't hurt.
- And, Turmeric, which is a spice made from grinding curcumin roots, may be beneficial. Curcumin supplementation has shown to reduce IL-6 in mice.
My theory is, if I can lower my serum (blood) levels of IL-6, the body will have less to draw on in the activation of fibroblasts. If higher levels of IL-6 are associated with more severe skin and lung involvement, then perhaps lower levels will mean a less severe manifestation of the disease.
The next two dietary changes concerning milk and dairy may be controversial, but they come from personal experience, and I believe they are a critical piece of the systemic inflammation puzzle. If you are joining me from
graciously@home, you may already be familiar with our story. When our son David was 3 years old, he experienced a season of gross and fine motor regression, loss of potty training skills, abnormal brainwave activity, speech and memory interruptions, hallucinations, involuntary muscle spasms and spastic reflexes, severe abdominal pain, widely variable and slightly abnormal core body temperatures, and autistic automatism behaviors. This lasted nearly 2 years. His neurologist didn't have any answers for us because every test came back negative, and he was tested for EVERYTHING! Even serious metabolic disorders that would have killed him before he was 10 years old had they come back positive. The neurologist humbly stated that he knew what was going on but not why. David was experiencing recurrent reversible attacks of encephalitis, central nervous system inflammation, but without any known cause.
Well, that was unacceptable. I needed to do something, and through a long process we decided to put him on an anti-inflammatory diet at the approval of his neurologist. We started by eliminating dairy. And within weeks his symptoms let up, only to return with even the smallest hint of dairy in his diet. We can tell within hours, based on his behavior, if he was given dairy by accident. Also, wheat seems to exaggerate his autistic and hyperactive tendencies. He becomes very internally disorganized and unable to process directions or sensory stimuli he has had wheat. It is a process very similar to his reaction to dairy. But this was only noticeable once dairy had been completely eliminated for at least 6 months.
Now... take our experience, keep it at the forefront of your mind and read the background and conclusion to this very interesting
study...
Although the cellular mechanisms responsible for the pathogenesis of autism are not understood, a growing number of studies have suggested that localized inflammation of the central nervous system (CNS) may contribute to the development of autism. Recent evidence shows that IL-6 has a crucial role in the development and plasticity of CNS.
In conclusion, our study demonstrates that IL-6 was significantly increased in the cerebellum of autistic subjects as compared with age- and sex-matched controls. We also showed that IL-6 over-expression in cerebellar granule cells in vitro impaired granule cell adhesion and migration. In addition, we found that IL-6 over-expression stimulated the formation of excitatory synapses of granule cells, while having no effect on the inhibitory synapses. These findings suggest that the elevated IL-6 in the autistic brain could cause an imbalance of neuronal circuits through its effects on neural cell adhesion/migration and synapse formation, and contribute to the development of autism.
We were watching as our son was slipping away, further and further on the autism spectrum... elimination of dairy and wheat stopped that process, and has given our son back. If "IL-6 (pro-inflammatory cytokine) has a crucial role in the development and plasticity (ability to be molded) of the central nervous system" and we saw such remarkable anti-inflammatory results from eliminating dairy and wheat, I suggest that dairy and wheat are dietary producers of IL-6.
Some studies would not agree with me when it comes to dairy, however there is growing evidence that even small amounts of wheat produces IL-6. This was an interesting read:
Opening Pandora's Bread Box: The Critical Role of Wheat Lectin in Human Disease.
Also check out
Dr. David Clark on youtube. He has countless videos on the relationship between autism, dairy and wheat.
I truly believe that IL-6 is negatively impacted by the presence of dairy and wheat in the diet. I have personally eliminated dairy, and am working on eliminating wheat. The first two weeks after receiving my diagnosis I made the following changes:
- removed dairy
- removed wheat
- new sleep schedule, 7-9 hours instead of 5-6
- yoga and meditation
- strategic clothing choices to reduce sensitivity to cold
I saw immediate relief of all my SSc related symptoms, and began to feel great! It had a loosening affect, and I felt less inflammation and tightening of my connective tissues. I even lost 7 lbs and noticed a significant drop in abdominal bloating. However, after those first two weeks, I became lazy and started allowing some wheat back into my diet, and I wasn't as strict about my sleep schedule. And wouldn't you know it, I am in the middle of a mini-flare of all my symptoms, the bloat is back, and my weight is on the rise.
The proof is in the wheat-free dairy-free pudding!
*****I would like to add here that I realize I am making large assumptions at times and that my theories, when not associated with any particular study, may not be accurate. However, I know experientially that wheat and dairy are inflammatory, and by removing them from the diet it is possible to see inflammation reduced drastically. We share what we know; what we believe to be true. And we hope it is a benefit to others, just as it has been for ourselves. Please... if you try any of what I have suggested in this post, please be sure to follow up with a comment on how you are feeling.*****