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Ask HN: Reading recommendations for understanding food allergies?
56 points by sacul on Sept 2, 2018 | hide | past | favorite | 24 comments
The prevalence of food allergies is increasing in the USA, at least, if not around the world. In my case, I have two daughters with serious food allergies and sensitivities. I’d like to educate myself on this issue, and I’d be grateful for some recommendations about where to start. Thanks!



Pathologist here, I use FDA-approved antibodies in my daily practice. I'm going to assume you're a hacker and you're looking for what I'll call "Haynes Manual" understanding. Any textbook on molecular biology or immunology would be a good start. Conversely, I would strongly advise avoiding anything from any internet personality with an opinion on this stuff.

The medical part of the internet is extremely skewed because the subject matter is rather complicated. There are experts trying desperately to stay in their lanes and keep up high walls by only publishing in serious scientific journals, and there's the YouTubers and bloggers inviting you into their pits of crazy. Even if you're trying to understand a fairly simple system, like a modern drive-by-wire Honda Accord, YouTube is likely to lead you astray before you find the right answer. When it comes to biomedical systems, most social media types are telling you to pour sugar in your gas tank, and the right answer has never, and may never, be posted in that forum.

The compromise is to read a textbook. Sort of like a Haynes manual isn't actually going to teach you the finer points of adiabatic expansion, but you can get reliable information about how your car is put together.


To the extent that you mean IgE allergies, ordinary medical care is rather sound; but where non-IgE sensitivities-you-can-still-die-from are concerned, practitioner knowledge is much thinner on the ground,and the science far more recent. You won't find much in textbooks, just journal articles. Look into MCAS (mast cell activation syndrome) and Dr. Afrin's book "Never bet against Occam" is the best starting point for that; although one point of view. Note that some usually-missed-no-matter-how-many-doctors-you-see diagnoses (esp in the young) such as Anylosing Spondylitis and Ehlers-Danlos Syndrome involve such sensitivities. Whether you children have these are not, they'll almost always be quick to reassure you they don't. Extraordinarily severe underdiagnosis (90%) in both cases.


Not a doctor but same experience and took a scientific approach which at the end was just about removing food and having a clean home. I wrote a short comment about this before [1] but will expand here:

1/ You need to know the kind of reaction they have. Go to the allergist. If they are gastrointestinal or if they are respiratory or of another kind. The first type can be solved after one year, the second is more dangerous with risk of anaphylactic shock.

2/ The allergist will do a blood study and patch tests. If it is respiratory it will show specific immunoglobulin types. If it is gastrointestinal it is probable there will not be immune system reactions then it is about trial and error, incorporating one by one the top 8 allergenes within an interval of 15 days. Some reactions are delayed until 15 days. It is important in these cases to 100% isolate traces of food with specific crockery for the child including cleaning sponge, etc.

My first daughter was cured after the first year, the second one continue to have issues with some cheeses and "dulce de leche" [2] and rice. These produce hippus and some small behavior changes, nothing terrible.

[1] https://news.ycombinator.com/item?id=15082349

[2] https://es.wikipedia.org/wiki/Dulce_de_leche?wprov=sfla1


This is true for IgE allergies, but many (sometimes life-threatening) mast cell reactions don't involve IgE and are very difficult to diagnose, since tryptase levels are very hard to measure properly, and the specific variant (alpha) of tryptase is relevant, and that pretty much requires a genetic study only available from one source right now.

It is always good to find triggers - but these can be very numerous (often secondary or transient) in MCAS (mast cell activation syndrome.) Tough job, if MCAS is at work.


> and that pretty much requires a genetic study only available from one source right now.

What is the source?

I forgot to mention that both daughters had blood in the stools after eating allergens. This is commonly connected with cow's milk protein intolerance but can happen with other allergens.



From my perspective as someone who suffers from IBS I understand why there is debate about seeing gastroenterologist & dietician vs a naturopath.

From what I have read, I think the reality is that gut based science including microbiome research is an emerging field with a lot of research in flux and it may be years before we fully understand everything. Because of this and just like deep learning you see a number of papers coming out almost everyday about diet, microbiome, brain-gut interaction, probiotics, prebiotics etc. Out of these a lot of the research needs to be backed up and there is just not enough yet to fully show a specific plan.

Unfortunately a number of gastroenterologists dont seem to keep up with research and I have even had one doctor tell me that everything is in my head. Things like these make you lose confidence in doctors and its understandable why some people turn to naturopaths even though a lot of it is quackery. I recommend working with a good gastroenterologist and a dietician to personalize your diet.

For IBS related personally I recommend following research coming out of Monash university.

I also recommend books Mind-Gut interaction by Emeran Mayer and The Good Gut by the Sonnenburgs


Be wary and skeptical of what you see on the internet regarding allergies. There are a lot of people trying to push quackery to make a quick buck online.


I have an unusual food allergy to poultry. I had the same question - seeking deeper understanding so I could better manage my life.

I searched online, had family in the medical research hunt for papers and finally made an appointment with a renowned allergist in DC - I flew there just for the appointment.

I left disappointed. My allergy is too unusual, there is no research available. What I need does not exist. For the common allergies - like kids and nuts - there are plenty.

The net/net from my experience is seek out an allergist, and be very specific in your requests.


My friend's mom started this http://www.foodallergybooks.com/. My friend has fatal food allergies (nuts and others) and has to carry around an epi-pen and has an extremely limited diet. Not sure if this is the best resource, but you can contact her to ask any questions you may have.


My recommendation is that you read this regarding food allergies.

What I do is (1) avoid the medical community like the plague (except for dentists); (2) take other advice without immediate rejection, unless it is plainly wrong, but skeptically nontheless; (3) over a long time gather relevant information and always be on the lookout for it; (4) try some of this information in practice with personal experiments to see if and how it works and do not expect it to work forever if it works at first; (6) try to define what exactly you mean by "food allergy" preferably before attempting to fix it.

Generally what has helped me has been a balanced lifestyle with moderation in all aspects including diet, sleep, exercise, work, play and spirit, since they all interplay, but this balance may be highly individualized and can take some trial, error and instrospection to determine and may vary with time. In USA society work can typically be a big imbalance and has been so for me.

My experience is that much of what people commonly call food and other "allergies" is due to cumulative negative emotional responses or stress often coinciding with a lack of happiness in life. In such cases the cure is to find and be that hapiness.


A good place to start is Food Allergy Research & Education (FARE), a non-profit that sponsors and is connected with a good number of doctors and researchers studying the subject: https://www.foodallergy.org/


I once talked to someone who suggested that allergies may be indicative of undiagnosed parasitic infections. I didn't understand the medical stuff well enough to remember it such that I could repeat it here. I'm just tossing that out as a suggested angle to read up on.

Best.


When I was looking into my own food "hypersensitivities" this was actually mentioned by the gastroenterologist, but I had an endoscopy and other tests, which ruled out that theory.

So could be an issue, but may not.


pre-note: the allergies are examples, as I'm not sure the specifics here.

The money you'd spend on just going to a specialist will far outclass what you are going to find online. They are able to isolate exactly what is causing the allergy and intolerance.

Personally, I don't think that food allergies are increasing so much as there is a wider understanding of allergies and intolerances (there is a difference). Conditions that were unclassified 20 years ago are now acknowledged as real conditions. Only a few years ago, people who would complain of being allergic to "hypo-allergenic" foods like bananas, plums, cherries, and so on were laughed out of the office and called hypochondriacs. Dust, pollen, and peanuts, and similar were classed as allergens. Today, the story is different. The relationship between seasonal allergies and food allergies is better understood. For example, you can be allergic to a certain tree, which only blooms in fall, and that tree will trigger a food allergy that only expresses itself during the fall. This doesn't mean you should start eating an allergen during the off-seasons (IMO).

I live with a lot of allergies and intolerances. My best advice is to simply stay away from what can make your daughters sick. Unfortunately, they will end up discovering allergies the hard way, and you can only support them by trying to recognize what is going to make them ill. If you open an orange and they are sneezing, stop buying and eating oranges. Everyone will have to make some sacrifices for them, but at the same time, learn to differentiate between what is okay and not okay to eat around them.

There is nothing more irritating than eating a piece of strawberry cake and apologizing to them for eating that in front of them. To them, you are eating poison, so it's no loss to them.

And FFS, please for all things lovely, don't ever ever ever sneak an allergen into their food to see what happens. That's incredibly rude, and yep, their friends and boyfriends are going to do this to them (ugh).

I will say that there are various reactions. For me, I know what I can and cannot eat. If I get something on accident, I'll simply toss up in about 15 minutes, which is much better than the reactions I used to get.

Please just listen to your doctor. Get the allergy shots, and get the epi-pen if needed.

I would also (lightly) advise that the issues with allergies is compounded because a lot of people don't understand nutrition at all. Adkins is good, bad, neutral? What? I'm nearing 40, have good general health, and look about 10 years younger than my age. I know of a few others with a similar range of allergies who are in amazing general health. A friend's relative plays professional sports and can eat maybe 10 things without getting ill. While it emotionally hurts to see someone who can't eat all the "healthy" stuff, just remember that it is poison to their body, and you just have to work with what you have.

Hope that helps.


But good luck finding a specialist highly conversant with MCAS if your allergies are not IgE reactions.


I am not going to try to debate "gwn7".

Please do your own research while seeing a Gastroenterologist or registered Dietitian. Specifically a specialist you are referred to from your primary care doctor. Do not go looking for a Naturopath or GAPS practitioner!

Please also do look into blogs that have debunked the people mentioned in that comment.

Please, please, please do not blindly follow the advice given by the comment by "gwn7".

Some discussions that I feel you might find informative:

https://medium.com/@ZDoggMD/naturopathy-is-99-9-bull-hit-but...

https://badsciencedebunked.com/2015/09/10/trick-or-tweet-dr-...

https://angry-chef.com/blog/want-to-see-something-really-sca...

https://www.naturopathicdiaries.com/

https://en.wikipedia.org/wiki/Joseph_Mercola

https://www.theringer.com/2017/1/5/16041098/dr-joseph-mercol...

https://www.quackwatch.org/11Ind/mercola.html

https://owndoc.com/diet/gaps-scam/

I wish you luck in finding the correct medical treatments for your daughters' conditions.


It's very surprising how much diet affects health. Very few members of the medical community have much knowledge of nutrition and a lot of the medical journal information is flat out misleading.

For example, I've had two bowel resections (first at age 12) and have been living with Crohn's and Colitis for over 20 years. Without those resources you've listed, I'd be stuck on monthly cyanocobalamin injections due to a terminal ileum resection. With those resources advice, I tried methylcobalamin and was able to absorb B12 orally. One less monthly injection for me.

I've also discovered a link between copper and angular cheilitis and many others. Most medical journals will point you in the direction of pharmaceuticals, which definitely have their place but also don't always work. I've been on many strong immunosuppressive medications most of my life and they do work.


Your points are fair. I just want to say that I'm completely aware of these criticisms on naturopathy, gaps, and Joe Mercola in particular.

And I can agree with the argument that many who identify themselves as "alternative practitioners" are scammers or just ignorant.

But.

1. Just because there are scammers among naturopaths or gaps practitioners it doesn't mean that those practices are completely worthless. A "real" naturopath's or gaps practitioner's approach to chronic disease can be immensely helpful, arguably much more than an ordinary hospital doctor.

2. If you don't trust naturopaths or gaps practitioners that's completely fine because the concerns you raised are fair. That's why I recommended a "functional medicine practitioner" before them, so check that out.

3. Mainstream medicine has its own share of problems, which in turn pushes people like me to naturopaths and gaps practitioners because they were the ones that helped me greatly. (the right ones) Mainstream medicine especially fails in diagnosing and curing chronic diseases, like food allergies.

Alternative medicine is in dangerous waters; while I argue that it has great value, one should be armed with proper knowledge in order to tell right from wrong, scammers from real practitioners, thus get the benefit.

If you are in doubt, check out "functional medicine" which was the first thing I mentioned. It is an approach that combines the good parts of both mainstream and alternative medicine as far as I understand.


Not reading recommendations, but here are a few keywords of topics that are directly connected to food allergies:

- leaky gut

- gut flora / gut microbiota / intestinal bacteria

- autoimmune disease - food allergy connection

- scd, gaps, paleo, autoimmune diets

And some people whose online/offline content may be helpful regarding the topics above:

- Mark Hyman

- Joe Mercola

- Natasha Campbell Mc-Bride

While educating yourself is extremely important, finding the right professional is priceless (which is really hard these days). I'd recommend to look for a functional medicine practitioner, or a good naturopath, or maybe a gaps practitioner.

Good luck with your daughters. Digestive disorders can breed all kinds of other health issues; so I'd recommend trying to cure their allergies (it's possible for many people if not all) before accepting to live with them.


As a parent of a child with multiple life-threatening food allergies, I cannot stress enough the degree to which the references you've posted are actively harmful.

The quackery promoted by some of the people you've mentioned can have real consequences for people who have anaphylactic reactions to foods.


Without knowing anything about the specifics of the subject or these particular people, I think that if you are going to make such an argument, you need to say more or provide compelling source of your own that convincingly support this position.

Otherwise, this seems like an unsubstantiated ad hominem.


As someone with two bowel resections (first at age 12) and both severe Crohn's and Colitis for over 20 years, I can say you're wrong. It's very surprising how much diet affects health. Very few members of the medical community have much knowledge of nutrition and a lot of the medical journal information is flat out misleading.


Can you be more specific or give an example?




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