Discussion in 'Other Health News and Research' started by Sidereal, Mar 6, 2016.
Only a conference abstract.
That's very interesting @Sidereal Thanks for posting it.
@Sidereal Another interesting avenue for me to explore -- thanks. Some of my symptoms, both long-term and recently-added, are indicative of Sjogren's. The only one I'm missing from the list under "Results" above is dry mouth. And, with three autoimmune illnesses already (RA, psoriasis and Hashimoto thyroiditis), I realize I'm at increased risk of other autoimmune illnesses over time. I was recently sent by my rheumatologist for additional autoimmune antibody tests (no results back yet). But, I doubt they included the above. I'll have to ask.
I obtained considerable relief for my RA and psoriasis by eating an autoimmune paleo diet. But, restricting carbs (grains and starches) created other problems. Now, after adding back some carbs, those problems are improving, and others are returning. Most interesting, based on the reference to orthostatic intolerance above, is my increased HR in response to minor stresses I don't even perceive as stressful. But, my quavering voice and alarming HR monitor (readings spiking as high as 160 in seconds, while sitting down, talking on the phone) tell a different story. I'm currently listening to a few interviews on the Microbiome Summit, and it seems possible adding back oats and potatoes (prepared as resistant starch) is damaging my gut, allowing toxins to affect my brain/central nervous system.
It seems I have to choose which torture I'm most able to tolerate. Because every decision with respect to food makes some symptoms better, and some worse. Anybody else experiencing something similar?
@Old Bones, I can definitely relate to your situation. Diagnosed with undifferentiated connective tissue disease (some features of lupus, some of Sjögren's) and antiphospholipid syndrome. My main problems are dysautonomia (including POTS and severe GI dysmotility), MCAS, easy fatiguability and PEM which I don't feel are adequately explained by those diagnoses. I've suspected for a while that a subset of people diagnosed with ME/CFS have a variant of seronegative Sjögren's where dysautonomia is the main feature, not salivary gland damage.
Re: diet. For me, aches/pains and energy levels got a lot better initially on a very low carb paleo diet, probably thanks to removing the most offensive foods for people with autoimmunity like gluten, dairy, soy etc. Digestion improved. Did very well for the first six months, thought I had found an answer. However, as time went on my overall condition, especially dysautonomia, energy levels and, most worryingly, mast cell reactions to more and more foods worsened dramatically to the point of becoming disabled and even bedridden for a while, unable to eat virtually anything without going into shock. Getting out of that whole mindset of "good" and "bad" foods required a couple of years of almost cult-like deprogramming. I have noticed that many people continue to believe in all kinds of weird elimination diets which are no longer working for them, or never really worked for them in the first place, or might in fact be making them sicker. Dogma, fear and paralysis.
It certainly seems that way. A catch 22. Unfortunately, it appears that once the gut has been destroyed through antibiotics, low carb/fibre intake and other things, even innocuous carbs like potato and white rice can become a problem. Before paleo I could eat virtually everything. After a year and a half of that diet I became intolerant of virtually all foods. Sure, I was sick before and had been for many years, but I wasn't getting allergic reactions to every meal and I could work full time. I'm housebound now, struggling with basic ADLs.
The preferred substrate of commensal bacteria is a variety of resistant polysaccharides. No amount of paleofantasy and wishful thinking by those authors can alter that fact. Any author who does not know this is a quack selling a diet that is dangerous to health. But it's not a simple matter of reintroducing these foods and you'll be healthy, far from. With ME/CFS, it's quite possible you'll feel worse in some ways. For people with minor illnesses or vague complaints, getting more prebiotics in the diet seems to be enough, judging by what people report on blogs. In our patient population, however, a severe illness exists and things like whole grains and legumes can cause significant pain and other symptoms so there appears to be no obvious pathway out of this mess once severe dysbiosis is in place.
In conclusion, I'm afraid I don't have any useful answers for you. I just thought I'd chime in with my experience.
It's a bit like psychobabble. Unrealistic expectations, wishful thinking, surrounding an intervention simple enough that everyone feels qualified to have an opinion on it.
Not that diet can't help. Often the expectations are just unrealistic and belief is preferred over observation of what is actually happening.
PS: imagine a parallel universe in which psychobabble is replaced by dietbabble. Dietary changes being promoted as cure for CFS. Something like low carb, which makes quite a few people feel horrible. And dieticians blaming patients for not getting better, recommending more and more restricted diets, and shaming patients for every minor deviation from the protocol. Maybe once psychobabble is dead, and science still has no answer for various diseases affecting the gut, we will arrive at dietbabble.
PPS: at least we would be dealing with claims that can be more easily tested and falsified. But maybe that is also the reason why psychobabble is more successful.
Reishi provides a polysaccharide that helps with autoimmunity and allergies. It doesn't work overnight, it is a slow progression to being less allergic to foods and more able to get off the couch.
@Sidereal I so appreciate the time you spent responding to my post. In some ways it makes me feel validated (that my situation isn't unique). But, it leaves me questioning whether my planned "next step" will accomplish what I'm hoping/expecting it will. My dogged persistence in looking for a dietary solution may be doing me more harm than good.
I was diagnosed with severe ME in 1990. Until approximately seven years ago, I made no dietary connection to my ill health. I was eating everything -- the healthiest choices from all food groups. But, with the gradual onset of an additional layer of symptoms, food seemed to have become the enemy. Like you, my GP initially considered a diagnosis of undifferentiated connective tissue disease -- later changed to RA based on blood work (positive anti-CCP antibody and HLA-B27) plus joint involvement. I've never had a positive RF test, so seronegative applies to RA as well as to Sjogren's.
With respect to food, I originally adopted the Specific Carbohydrate Diet with some success. But, I now realize that many of the "good" foods I was eating to replace the "bad" were responsible for my new onset of bowel problems due to their high-FODMAP content. Going on a low-FODMAP diet helped, but only as long as my diet was restricted. And, avoiding FODMAPs is not recommended long-term. This led me to believe I needed to "heal and seal" my gut as promoted by the GAPS protocol. My goal was to eventually increase my food choices, but the opposite occurred. I was delighted with rapid improvement on the first two stages of the GAPS introduction diet. I lost six pounds in the first week (five of which I attributed to water retention). I no longer looked seven months pregnant due to extreme bloating, and my creaky joints and pain disappeared. And, my psoriasis was gone. Like you, I thought I had found the answer. But, I wasn't able to introduce foods beyond the first two stages without my GI symptoms returning. And, after becoming extremely constipated (didn't have a normal bowel movement for months), I started to wonder what was feeding the healthy bacteria in my gut. My sleep issues worsened, and within a couple of months, my eyes became so dry I could barely open them when I awoke, numerous times, each night. I was working with two GAPS-certified holistic nutritionists, and none of their suggestions worked to alleviate my new symptoms. I believe the fermented foods recommended on GAPS helped the microbial balance in my colon, because bloating over the transverse colon is gone. But, only recently have I learned that ferments are not recommended for those with SIBO. And, then there's the issue of histamine. Like you, my mast cell reactions worsened dramatically, adding another layer of disability. Currently, I react immediately after eating anything.
With respect to my dry eyes, I question the diagnosis of Blepharitis. Because, the prescribed protocol of warm compresses and vigorous scrubbing along the lid margins has done nothing. These days, I'm inclined to believe the advice in Paul Jaminet's "Perfect Health Diet" book that starches are required for mucin production (a component of tears). A reader report in this book describes "drying out" from too few carbs, and this seems to be true, at least for me. I've started experimenting with resistant starch. It has improved my sleep, and the one night my eyes haven't almost dried shut was after eating two large servings of chilled potato salad that day. But, my arthritic pain has increased significantly. And, after a period of time without it, it seems worse than ever, particularly at night.
I can't blame paleo for my current dietary issues, at least not entirely, because before the added complication of autoimmunity I could eat virtually everything. The fact that I couldn't anymore is what led me to the paleo diet. And, with respect to the pain of arthritis, and the psoriasis, it was amazingly successful. I, too, am struggling with basic ADL's. Trying to do the vacuuming while lying on the floor is awkward, to say the least. And, I still can't understand why my heart rate is so much higher away from home. The only thing I can attribute it to is naturally walking faster when outside.
Absolutely. These days, I read, and listen to, everything I can with respect to gut health. I often regret we don't have many experienced functional medicine practitioners in Canada. They make the solution sound so easy -- diet (almost always including fermented foods), probiotics, and stress-management techniques. But then, I remind myself how many times I've been disappointed when a large expenditure of time and money working with various Naturopaths, for example, haven't resulted in any improvement. It seems they are successful helping those who need guidance with respect to poor lifestyle choices. Those of us with complex chronic illnesses have already done this work, often for years.
Again, thanks for sharing your story. It helps me to be more realistic, and may keep me from adopting another dangerous quack diet in its entirety. I'm becoming much more discerning, and trusting my own "gut instincts". I still believe some of the "experts" hold a piece of the puzzle. However, they need to realize each person's puzzle is different. "One size fits all" applies no more to diet than it does to socks and underwear.
You can also try a Google Site Search
Separate names with a comma.