3 ms·

Sjögrens. Which is similar to Lupus. Diet changes can make a huge difference. Earlier the better. On many support forums I see a pattern of people using the

Sjögrens. Which is similar to Lupus. Diet changes can make a huge difference. Earlier the better. On many support forums I see a pattern of people using the various meds with mixed results. Then people starting to experiment with which foods they seem to do better with. Then discovering the auto immune protocol diet. A lot of people don’t wanna go to the effort, so won’t try it and complain about it. People that try it and actually follow it often have amazing results, and all their symptoms calm down. A lot of people just cannot give up the pizza and chips though.

hirvi74 3y ago
My issue with the dietary suggestions is that I have yet to see enough conclusive evidence that any of them work (especially long-term). I feel like much of the information is just a Survivorship Bias. Who blogs about the countless diets that failed to help them? My understanding is that even for those who receive positive results, such results are highly anecdotal and individually specific. One person goes vegan and is cured. Another goes on a strictly carnivore diet and is cured. Same can be said for Mediterranean Diet, Plant-based, keto, etc.. So, which one should be recommended? How many should one try before they give up? How long should they try before they give up? "Nightshades cause inflammation." How? Why? At what dosage -- one slick of bell pepper can't be equal to five pounds of tomatoes, right? Why is this an issue only in some people? I am not trying to dismiss the premise because there could be validity to dietary factors impacting disease prognosis, but part of me also wants to believe that if the treatments were as simple as dietary interventions, then a majority of people with AI diseases would be cured already. I refuse to accept the conspiracy that diets hold the hidden cure for a majority of AI diseases, and that Big Pharma and doctors wouldn't profit as much if people made dietary interventions, so that's why they keep people sick with AI diseases by only treating the symptoms. Accepting such would be ignoring that there is also an entire "Big Diet" industry that stands to make a profit off the same desperate people. All I am gonna say is that, Dr. Jonas Salk invented the first effective Polio vaccine, did not patent his findings, an thus released it for free so the world could be a better place. Dr. John Pagano apparently discovered a diet that helps treat/cure AI diseases. You can learn more about it for $64.22 on Amazon.
- atombender 3y ago
  Exactly. Almost all dietary advice comes from personal anecdotes, because we have no studies. Almost none of it is backed by any high-quality evidence. Unfortunately, it spreads on social media. It's actually really hard to study dietary impact on autoimmmune diseases. Dietary studies are hard, period. So they're generally not done. Almost all studies are based on self-reported questionnaires. The nightshade thing has no real basis in science. I don't know who came up with it, but it may have been Pagano — a chiropractor who provided no sources for his claims, nor had any medical training relevant to autoimmune diseases. There's admittedly one study that shows that glycoalkaloids like solanines (present in nightshades like potatoes) may aggravate Crohn's disease due to intestinal permeability [1], but we don't know if it applies to other autoimmunes like psoriasis (where disrupted permeability is present in more severe cases [2]) or RA. I can appreciate the "big pharma bad" point that drugs like biologics only treat the symptoms and not the underlying cause, because it seems like an insane amount of money is spent on drugs that basically "pave over" a pathology — like prescribing earbuds to drown out a squeaky wheel rather applying some lubricant — and not putting enough money into finding the cause. But even though it seems lopsided, until a cure is found, we have to be pragmatic; we need those drugs. (Of course, the argument also ignores the fact that most drugs in the world only treat symptoms. Nothing bad with that.) [1] https://pubmed.ncbi.nlm.nih.gov/12479649/ https://pubmed.ncbi.nlm.nih.gov/12479649/ [2] https://pubmed.ncbi.nlm.nih.gov/30222202/ https://pubmed.ncbi.nlm.nih.gov/30222202/
- tigen 3y ago
  Some of these books describe obvious (or at least uncontroversial) things. Like one book describes issues with Celiacs eating wheat in a way that implies it's a general risk for everyone. However diet can clearly affect the gut microbiome which is involved in development of various immune diseases (including allergies). Less clear how it might treat it after the fact, where evidence seems lacking. Diet can clearly affect symptoms/complications. If someone has gut inflammation then different foods (or fasts) can be dramatically more or less compatible, and could potentially improve quality of life or stave off surgery. In general though, expecting too much from diet is likely to cause disease worsening compared to getting on the best drugs.
- lelanthran 3y ago
supertofu 3y ago
I have UC. I've been experimenting with diet for 2 years now. If this current diet fails, I'll just have to give up. Sure, lots of folks won't change how they eat. But some people really are making radical changes to their diet and still seeing flare-ups.

hirvi74 3y ago

My issue with the dietary suggestions is that I have yet to see enough conclusive evidence that any of them work (especially long-term). I feel like much of the information is just a Survivorship Bias. Who blogs about the countless diets that failed to help them? My understanding is that even for those who receive positive results, such results are highly anecdotal and individually specific. One person goes vegan and is cured. Another goes on a strictly carnivore diet and is cured. Same can be said for Mediterranean Diet, Plant-based, keto, etc.. So, which one should be recommended? How many should one try before they give up? How long should they try before they give up? "Nightshades cause inflammation." How? Why? At what dosage -- one slick of bell pepper can't be equal to five pounds of tomatoes, right? Why is this an issue only in some people? I am not trying to dismiss the premise because there could be validity to dietary factors impacting disease prognosis, but part of me also wants to believe that if the treatments were as simple as dietary interventions, then a majority of people with AI diseases would be cured already. I refuse to accept the conspiracy that diets hold the hidden cure for a majority of AI diseases, and that Big Pharma and doctors wouldn't profit as much if people made dietary interventions, so that's why they keep people sick with AI diseases by only treating the symptoms. Accepting such would be ignoring that there is also an entire "Big Diet" industry that stands to make a profit off the same desperate people. All I am gonna say is that, Dr. Jonas Salk invented the first effective Polio vaccine, did not patent his findings, an thus released it for free so the world could be a better place. Dr. John Pagano apparently discovered a diet that helps treat/cure AI diseases. You can learn more about it for $64.22 on Amazon.

atombender 3y ago
Exactly. Almost all dietary advice comes from personal anecdotes, because we have no studies. Almost none of it is backed by any high-quality evidence. Unfortunately, it spreads on social media. It's actually really hard to study dietary impact on autoimmmune diseases. Dietary studies are hard, period. So they're generally not done. Almost all studies are based on self-reported questionnaires. The nightshade thing has no real basis in science. I don't know who came up with it, but it may have been Pagano — a chiropractor who provided no sources for his claims, nor had any medical training relevant to autoimmune diseases. There's admittedly one study that shows that glycoalkaloids like solanines (present in nightshades like potatoes) may aggravate Crohn's disease due to intestinal permeability [1], but we don't know if it applies to other autoimmunes like psoriasis (where disrupted permeability is present in more severe cases [2]) or RA. I can appreciate the "big pharma bad" point that drugs like biologics only treat the symptoms and not the underlying cause, because it seems like an insane amount of money is spent on drugs that basically "pave over" a pathology — like prescribing earbuds to drown out a squeaky wheel rather applying some lubricant — and not putting enough money into finding the cause. But even though it seems lopsided, until a cure is found, we have to be pragmatic; we need those drugs. (Of course, the argument also ignores the fact that most drugs in the world only treat symptoms. Nothing bad with that.) [1] https://pubmed.ncbi.nlm.nih.gov/12479649/ https://pubmed.ncbi.nlm.nih.gov/12479649/ [2] https://pubmed.ncbi.nlm.nih.gov/30222202/ https://pubmed.ncbi.nlm.nih.gov/30222202/
tigen 3y ago
Some of these books describe obvious (or at least uncontroversial) things. Like one book describes issues with Celiacs eating wheat in a way that implies it's a general risk for everyone. However diet can clearly affect the gut microbiome which is involved in development of various immune diseases (including allergies). Less clear how it might treat it after the fact, where evidence seems lacking. Diet can clearly affect symptoms/complications. If someone has gut inflammation then different foods (or fasts) can be dramatically more or less compatible, and could potentially improve quality of life or stave off surgery. In general though, expecting too much from diet is likely to cause disease worsening compared to getting on the best drugs.
lelanthran 3y ago

supertofu 3y ago

I have UC. I've been experimenting with diet for 2 years now. If this current diet fails, I'll just have to give up. Sure, lots of folks won't change how they eat. But some people really are making radical changes to their diet and still seeing flare-ups.