Are Leaky Gut Syndrome and the "Auto-Immune Protocol Diet" quackery?

Posting this here in the hopes that someone has more expansive medical science chops than me and can shed some light on this.

There are a whole host of certifiably fake diseases out there, which usually go by names like “chronic candida”, “adrenal fatigue”, “non-celiac gluten sensitivity”, and the lovely “Wilson’s Temperature Syndrome” (which is supposed to be some chronic thyroid dysfunction). With a perpetually hypochondriac parent who bounced from fake disease to fake disease for my entire life, I am familiar with many of these.

My elementary-aged oldest son has high-functioning autism. We reject pseudoscientific nonsense about vaccine injuries; all of our kids are fully immunized.

My son has tested positive for food allergies in the past, but only peanuts appear to prompt serious reactions.

He recently began exhibiting some persistent edema and irritation in his extremities; we took him to the pediatrician and she was unable to diagnose but did do some blood tests. He came back positive for exposure to Lyme disease, so we started him on antibiotics. He has an upcoming appointment with a specialist referred by the pediatrician.

My wife has become very interested in the AIP (auto-immune protocol) diet and a lot of surrounding ideas. It has every indication of typical quackery, but despite significant searching I haven’t been able to find any actual doctor giving a comprehensive discussion of it. It focuses on identifying “inflammatory foods” and eliminating them from the diet. I haven’t been able to find any actual explanation of how the numerous lists of foods to avoid or include are generated, or what is actually supposed to make something an “inflammatory” food. Of course it has glowing reviews; if you eliminate 70% of your diet, you’re likely to see SOME difference in your life, if only due to having more regular meals because you now have to plan everything days in advance.

Is there a doctor in the house who can shed some insight into “leaky gut syndrome” and the auto-immune protocol diet? Or even anyone with better google-fu than me?

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I do not have an MD like some here, but I’ll share some of my personal experience. One of my two daughters (who is now 21), started having debilitating migraines on a very frequent basis (2-3 per week)when she was about 14. My wife took her to a number of doctors, frustrated with nothing but pain medication to care for symptoms. She ended up bring our daughter to a Doctor of Chiropractic Medicine, who recommended a gluten-free diet. Placebo or not, this helped with the headaches tremendously. The hypothesis was a leaky gut that led to some autoimmune-related neurological effects. My daughter has seen various reputable MDs since then (the DC was a little too weird, even for my wife) that have kept her gluten-free. About 2 years ago, she began having some considerable GI issues and the MD she was seeing recommended a grain-free AIP diet, and that seemed to help quite a bit, too.

My view is this - there is still a LOT we don’t know about the human body. Unless something is obviously harmful, if a doctor with a particular area of specialty has a suggestion that might help, give it a committed try. My wife believes in the diet changes a lot more than I do, but I am committed to helping with a lot of the necessary baking and other food prep, and don’t dare say anything audibly that might even remotely sound like criticism. What have I got to lose by trying?

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I am also a bit skeptical about the whole “gluten-free” movement. However, even if it is a placebo effect, who cares? If it works, it works. As long as people are not forgoing known beneficial treatments or having economic problems because of it, I would say it is harmless at worst and very beneficial at best.

As you rightly point out, there is still a lot we don’t know. It is entirely possible that massive doses of a plant protein in places where it isn’t expected can produce antibodies or activated immune cells with activity against human antigens. A pioneering biotech firm could probably make some dough (pun intended) by coming up with a gluten panel for diagnosing auto-immunity.

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My friend stopped getting migraines and seeing in black and white after he stopped eating gluten. Celiacs.