Autoimmune Thyroid Disease

An Unfortunate and Lengthy Adventure in Misdiagnosis

The problem with the low oxalate group

with 6 comments

I have so many more important things to do than this. Internet wars are just tiresome. However, when something upsets me, I tend to dwell on it and I can’t do anything else until I have had my right of reply. Hence I am writing this instead of writing one of the final chapters of my novel. I would much rather be writing my novel, I was working on a killer scene but because of this it’s fizzled out like a damp squib. This is why I don’t do the internet anymore.

I wrote a criticism of the low oxalate diet some time ago. Looking back on the article now, I can see I spent a lot of time waffling, ranted off on other subjects like gluten, and wasn’t clear enough in my conclusions. In actual fact, the article should have been entitled “the problem with the low oxalate yahoo group,” since that is really what I was criticising.

So, I’ll state my conclusions about the low oxalate diet here:

1. A low oxalate diet is helpful to some people, particularly those with kidney stones or vulvodynia. I have recommended people consider oxalates along with other theories on the occasions when their symptoms are anomalous and/or do not resolve on the failsafe diet.

2. There are many, many people on the low oxalate diet group who are clearly affected by salicylates, amines and glutamates, and may not be reacting to oxalates at all.

3. These salicylate/amine/glutamate responders are helped somewhat by the low oxalate diet because it cuts out a very, very similar list of foods to those cut out on the failsafe diet, in particular, the very high chemical foods failsafers see reactions to, like chocolate, nuts, leafy greens, “too much protein” (i.e. amines) and so on.

4. These individuals falsely draw the conclusion that they are responding to oxalates. When they react to anomalous low oxalate/high salicylate/amine foods, they believe they are “dumping” oxalates. This is the equivalent of a candida “herx”. It is something that people use to explain away anomalies rather than reconsider that their hypothesis may be false.

5. It is damaging that people who are not responding to oxalates are continuing to believe that they are. It is damaging to themselves, and damaging to others with the same constellation of symptoms. It is also damaging to the science of the low oxalate diet, because it is really messing up the perception of what symptoms are and are not caused by oxalates, and it is really messing up their variables.

6. This kind of group, like so many other yahoo health groups, is what I call an aspie-trap. Aspies see patterns in things. Sometimes those patterns aren’t really there. Aspies can get attached to things and hate to move on, and they will keep on trying for years without concluding that they are on the wrong track.

7. I wish these people would try the failsafe diet FIRST, before trying a low oxalate diet. Unfortunately, most of these people have not heard of the failsafe diet.

I wrote the post because I was SO TIRED of having people come to my group who had tried the low oxalate diet and it didn’t work properly for them, or they were really, really confused about what they were reacting to and trying to cut out too many foods at once.

My problem is not with a low oxalate diet per se, it is with the really big goof-ups people testing a low oxalate diet have been making in the scientific method. My main point was this: unless you have tried the failsafe diet first, there is absolutely no point going on a low oxalate diet. Unless you have first established whether you react to salicylates, amines and glutamates, you are failing to control your variables properly!

I’ve had some moderate hostility in response to that post. It doesn’t help that I waffled a lot.

I have a nifty RSS feed that notifies me when other people link to my blog, and it turns out that someone from the trying low oxalates yahoo group recently discovered the post.

First I found a blog post with a copy and paste of Susan Owen’s response, along with the following comment:

Below from Susan, list owner of the oxalate list. The low oxalate diet works for me and I continue to read the list to find out more info. I suggest the list to clients who know someone with problems which seem like low oxalate diet might help. Lots of success stories on the list of people with kids with Autism or Asperger’s syndrome who had to deal with temper tantrums, rage, etc. Low Oxalate diet does not cure all problems from Autism, but it sure seems to help a lot. [my emphasis]

Unfortunately this is exactly what I mean by point 6. on my list. The low oxalate diet is an aspie-trap. It helps, but it does not cure all the problems. That’s because oxalates are unlikely to be the problem! The diet is simply working by cutting out most salicylates, amines, and glutamates. Think about it: why would cutting out oxalates fix temper tantrums? Oxalates don’t affect neurotransmitters, unless you are SO toxic that they have disturbed your blood mineral levels. Salicylates do affect neurotransmitters, and amines and glutamates ARE neurotransmitters.

So here’s what happened on the trying low oxalates group.

Someone posts a link to my blog post along with the following comment:

I think the author is a bit hostile to anything that does not fit with her diet 26202

I think this is a bit of an unfair introduction, don’t you? The only thing I’m hostile to is pseudoscience. I’m very hostile to morgellon’s disease, for example, or chronic lyme disease. I recognise very much that different people have different dietary needs, that’s why I don’t go out of my way to criticise carbohydrates even though I prefer to low carb. The only diet I’m actively hostile to is the candida diet, because it is such utter CAM tosh.

Says the next poster:

I looked at this point, and the person seems to have a bone to pick. Too bad – telling people a diet doesn’t work just because she thinks they don’t have data is like saying the sun isn’t shining because it’s behind the clouds.

Nowhere in my original post did I suggest people not try the low oxalate diet because of  “a lack of data”. This is an odd thing to say. I clearly spend most of the post telling people to control their variables – i.e. to clarify their data by first testing an established diet – the failsafe diet – which known to clear up the symptoms that are claimed by the trying low oxalates group to be caused by oxalates.

There are lots of folks who are pro and con all sorts of things, and when they are pro or con because of a personal bone to pick (my guess with this blogger) then you aren’t going to change their minds. That’s fine: I’ve got my results with my daughter, and that’s all that I need.

A personal bone to pick? This individual is now inventing stuff to explain my actions away. Of course, I can’t be making a rational argument, I must have some sort of emotional hostility to the low oxalate diet. Obviously I have been personally offended by the low oxalate diet and bear it a grudge. Perhaps I really, really like rhubarb or something.

However, she’s aggressive and nasty so I’m not likely to put a comment on her blog. 26207

I can only say WTF?! I will certainly dish it out in the comments section when people write me anonymous insults (as someone chose to on that post), but there’s nothing aggressive or nasty about my criticisms of the low oxalate diet group.

This time it’s Susan Owens’ turn:

This particular blog is pretty clearly what is called an “argumentum ad hominem” [...] Ad hominem argumentation is along the lines of “You’re ugly and your mother dresses you funny”.

Notice how much space this blog piece gives to characterizing the personality of the people on our list (not just me). Her own diagnosis of us as being Aspergers seems to be what invalidates, in her eyes, what we do here, or any need on her part to address specific points of research we’ve brought in from pubmed. I wonder when (if ever) she was on our list because she must have been busy diagnosing us rather than paying attention to the scientific details!

Why would having Asperger’s invalidate “what we do here”? I have Asperger’s. If I was out to invalidate people with Asperger’s, I would be invalidating the whole of my own blog and the whole of my personality. I have a pro-aspie bias and generally think of aspies as being smart, technical people like me, with a few unfortunate weaknesses, in that, untrained, they can get really carried away with things. There was no ad hominem attack involved. My own group is full of smart aspie people too, many of whom have the same weaknesses. I am always trying to get them to control their variables and not jump to conclusions on too little evidence (apologies community members!).

The problem in interpretation here, is that Susan has assumed that being an aspie is a negative thing. It isn’t. It’s the best thing that ever happened to me. I’m GLAD I was born this way. If you told me I could eat what I want and have loads of friends, I would not give it up in exchange. Susan thinks I am criticising the low oxalate group members for being weird. I’m so not.

Instead, what I was trying to do was to point out the horrible ways in which internet health forum aspies can get trapped in styles of thinking and end up in the wrong place. It is no different with the candida diet. I am so tired of seeing these individuals turn up at my group believing they have an oxalate problem (or a candida problem) having been low oxalate (or on the candida diet) for ages, and after proper testing on my group, THEY DON’T have a problem with oxalates (or candida). I have certainly had individuals turn up who DO have a problem with oxalates (or candida), but they are in the minority and have specific conditions like vulvodynia (or thrush).

In actual fact I devote very little space in the post to this characterisation of aspieness (four paragraphs out of around twenty five), the vast majority of the post describes the flaws in people’s reasoning that can lead them to false conclusions about what diet they need, and scientific criticisms, which are not addressed by Susan.

Susan may wonder, but I have been lurking on trying low oxalates for a long time now. I found the group a couple of months after I first went failsafe. I thought “hmm, there’s a variable I ought to test for, maybe it explains some of my anomalous reactions,” and so I did test for it. I discovered that I do not respond to dietary oxalates. I am just very sensitive to food chemicals (and only mildly responsive to the opioid peptides in gluten and A1 casein, while we’re at it, and no I don’t have leaky gut either). I still sometimes suggest oxalates as a cause if I see a rare anomalous reaction in myself or someone else. However, I usually trace anomalous reactions to sulphites.

Most people don’t have the luxury of variable-controlled testing like I did, because they are unaware that there is more than one diet. The longer I lurked on the oxalates group, the more I realised that there were so, so many people there who were responding to salicylates and amines and attributing this to oxalates, and they were all getting trapped in the same confirmation-bias style of thinking that plagues so many CAM groups, whether they be GFCF, candida, lyme, or whatever.

Next Susan goes on to write:

Interestingly, she says in the “about me” section of her blog that she has Aspergers. She also says:

>I have a variety of chronic genetic health problems and peculiarities, including asperger’s traits, ADD/concentration problems/brainfog, cyclothymia symptoms, fibromyalgia (I do have an official diagnosis for that), reactive hypoglycaemia, back and neck pain, ear ache, heart palpitations, insomnia and hypnic jerking, allergies, asthma, and eczema. Messy, huh?

I don’t know what listmates think as they read her list of health
complaints, but to me, she sounds like a pretty good candidate for trying LOD, but I doubt she will try it because of her loyalty to the Failsafe model.

Can you imagine how much this remark irritates me?

It presumes I am too prejudiced and close-minded to try the low oxalate diet. In fact, I have already tried the low oxalate diet and I have discovered that I do not react to oxalates.

It is a beautiful example of confirmation bias. Susan has quoted this list of health problems from my about me page. The very next paragraph on my about me page goes on to describe how I follow the failsafe diet. It then concludes with the following phrase:

[T]he above health problems have all but vanished as a result.

In spite of clearing up my health problems by going on failsafe, Susan still believes I am a candidate for the low oxalate diet. Unbelievable. This is a very strong indication of confirmation-bias in her thinking style.

Susan goes on to make a couple of statements I totally agree with:

Her blog gives me the opportunity to say here that I’m thrilled to hear about the improvements people have seen on this diet, but there isn’t a good reason to develop a loyalty to the diet outside of what it has been capable of changing. Any diet should rest on its own merits in being able to help people, but it shouldn’t acquire a life of its own.

[...]

I am confident LOD has many specific niches and can stand on its own merits and can compete “in the open market place” (as if that were a goal?). My goal is to get people better and I see LOD as one very interesting and capable tool which has its own relevancy and reason to study carefully.

And some points I don’t agree with:

When people criticize THIS STAGE of the diet’s history, I guess they are expecting RESEARCH at the beginning stage of its life, to pop, as it were, out of the womb already dressed in academic gowns, carrying a Ph.D. diploma, sporting a full beard and speaking in a voice that is already low, mellow and mature!

The problem is, Susan, you have a very good opportunity to do some of this research, albeit informally, with your group members. But unless you actually tutor them to control their variables properly, everything you are doing on trying low oxalates is invalidated by the existence of the failsafe diet, and specialist allergy/food intolerance doctors are not going to take it seriously.

You need to tell your audience to test for salicylate, amine and glutamate reactions. Because all of the symptoms you claim to be caused by oxalates – with the notable exception of kidney stones, vulvodynia, and one form of arthritis – are already established by the Royal Prince Alfred Hospital Allergy Unit to be caused by salicylate, amine and glutamate sensitivity. Unless you are going to weed out all of the people on your group who ought to be failsafe, then you are not going to be able to discover those individuals who have actual real problems with oxalates. Control your variables!

Susan finishes with the following remarks:

It seems LOD’s philosophical critics tend to think the only way to stop the LOD from spreading like a plague (and offering competition to other diets with loyal followings) is by discouraging people on the front end from ever joining our list to consider what we present here. I guess that is why this lady wants to characterize our list as

>so systemised and technical, it tends to attract aspies, rather like flies into a big sticky spider web. Whee, thinks the aspie, I like this; technical language, orthomolecular medicine, smart people like me, and lots of complicated theories!

So I will state again, clearly, the objective of my original post was not to discourage people from trying the low oxalate diet. It was to encourage them to try it whilst controlling their variables. It was to encourage them to avoid that big sticky spider web of thought that results from confirmation-bias, from being over-loyal to diets that only half-fix the problem, and from assuming that what appears at first glance to be scientific is actually fully grounded in science.

I am not sure why this message did not get through in the first place, but I suspect it has something to do with people reading things the way they would like to read them instead of reading what is actually written.

I am not sure why Susan wants to characterise me as someone who is afraid of a diet which “offers competition to other diets with loyal followings” – i.e. that I am somehow afraid that the low oxalate diet would take over from failsafe. This is not a marketplace and diets are not wares. I have no financial interest in the failsafe diet.

I also have no credibility or reputation invested in the failsafe diet, which is already very well established and used widely in Australia (unlike Susan’s diet). On my group, if I think someone is not sensitive to salicylates and amines, I will suggest a different course of action, whether that is a different diet, or a trip to a doctors to be diagnosed with a completely different condition. For example, frequently when individuals present with digestive problems, the first thing I will ask is if they have been tested for celiac disease, despite the fact that many people intolerant of salicylates and amines have digestive problems. The only reputation I have invested in is in remaining scientific and open minded, and in steering individuals towards the right cure for their problems, not in steering them towards what I would like to be the cure for their problems.

At any rate, I hope ths woman hasn’t ad-hominem argued herself out of trying something that would get her well, or at least better! That would be sad, wouldn’t it? 26225

Were it true, it would be very sad. But it is not, because I have actually controlled my variables properly.

Susan focusses almost entirely on what she regards as the “ad hominem attack on aspies” at the start of my post and doesn’t address any of my actual criticisms. Once Susan has had her say, everyone else goes along:

I sure won’t give her a thought. You have helped so many of us. We must just ignore posters like this. [...] just let the nuts go spread their nonsense and we’ll continue to get our health back. 26226

So now I’m a nut. I’m not making any rational criticisms at all.

Funny that the criticism characterizes us all as “aspies” when there are some of us here who have arrived due to vulvar pain and chronic yeast [...] Her post is personality assassination of a group based on very little evidence. 26228

All I said was that the group was “very aspie”, not that everyone on it had Asperger’s syndrome. Why do some people think in absolutes? Keep ignoring the 20+ paragraphs of logical criticism that followed the characterisation, in the hopes that they will go away.

sounds like this lady suffers from the same thing other closed-minded people do when it comes to health issues. it’s sad that some get an *attitude* when they feel like they have more education under their belt and start belittling everyone else, even though they may have no experience whatsoever in what they’re writing about. 26240

When criticised, people like to console themselves by turning the critic into an emotionally driven character rather than a rational one in an effort to undermine their arguments.

People don’t like to countenance ideas and theories that haven’t been constructed in their own minds. Maybe it’s a matter of personal pride. Such a pity. It is in my opinion one of the greatest barriers in the development and proliferation of new ideas and the greatest impedance to helping our kids. 26242

Strange, because I didn’t construct the failsafe diet in my own mind, or the GFCF diet in my own mind, or the Atkins diet in my own mind… but I countenanced them. I’ve countenanced a whole lot of ideas in the past. At one point (when I was really ill and desperate) I thought I had candida or lyme and I was juicing green vegetables and eating apricot kernels like I had cancer or something. I disagree with the poster. I personally feel the greatest barrier to helping autistic kids is the sheer lack of scientific reasoning displayed by the biomed community. A lot of active harm is being done to autistic kids this way.

Being an aspie might be beneficial. 26243

Says someone who has got trapped in this odd idea that I think being an aspie is a bad thing.

This blog sounded to me like an intelligent critical opinion – albeit a shallow one. [...]

Her website is difficult to comb for salient information, given her tendency to write on about absolutely everything she knows [...]

However, she makes a good point that people can get overly fixated on a single problem like gluten sensitivity, yeast dysbiosis, etc and can tend to blame every physical and even emotional problem on their pet cause. She seems to feel the same way about salicylates, amines and glutamates… and because this listgroup is specifically about oxalates, it’s easy to get the idea that we’re all obsessed with that alone as the source of all our problems. 26250

The comment “she seems to feel the same way about salicylates, amines and glutamates” could be interpreted in two ways. I’m choosing to interpret it generously, in that this individual believes I do not blame everything on salicylates, amines and glutamates, which would be correct.

But yey for me! I may be shallow and in need of an editor, but at least one  on the low oxalate list actually read what I had written instead of what they wanted to read!

I would not have felt the need to reply to any of this if I had not been so wildly misrepresented and the criticisms I actually made were taken seriously. Instead what results is a character attack on me, and no answer at all to the arguments I put forward.

I didn’t say anything half as nasty in my original post as these people have written in response. Girls, act more like ladies and less like bitches, huh? If you’ve got a problem with what I write, keep it on a logical and a scientific level please.

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Written by alienrobotgirl

6 December, 2008 at 1:48 am

6 Responses

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  1. You know what’s funny? After I went low-oxalate (or zero oxalate, really,) I was expecting a horrific “dump” after what I’d read on the LOD. Well, guess what? I’ve been LOD for over a month and have not had a “dump” :) And I had a pretty big oxalate problem, having vulvodynia and just coming off of plenty of high oxalate herbs that had temporarily worsened me.

    You are spot on with your criticism of this group.

    selenaj

    6 December, 2008 at 7:24 pm

  2. Some days ago I joined the LOD group because I want to trial oxalates as well for my ongoing health problems, and saw all those posts. It seemed just silly because in my opinion there was nothing insulting in your original post, just stating logical facts. Some people either get insulted very easily (I don’t think that’s an aspie trait though?) or they haven’t read your entire post at all, not to mention all your other writings like the failsafe elimination diet where oxalate content of foods is stated as well.

    I guess what I want to say is, there are people who get your point, agree with you, and most importantly are helped a lot by your online presence. Thank you for being so direct and exposing yourself to criticism.

    janchi

    8 December, 2008 at 6:48 pm

  3. Engaging in us versus them is one of the roots of all evil unless it’s for the sake of comedy about how destructive and pathetic us versus them is. People are always overly protective of their ‘us’ even at the expense of throwing logic out the window and burning down the world. (Religion, sports teams, family, friends…)

    This reminds me of one of my favorite internet quotes: “Winning an argument on the internet is like winning at the Special Olympics. Either way you’re still _something_politically_incorrect_.” (Or something like that :)

    The bottom line is that you do good work with good intentions.

    casey67

    10 December, 2008 at 5:10 am

  4. I think you’re 100% right on this one. Now go back and finish that novel and have some happy holidays :)

    oz4caster

    16 December, 2008 at 2:44 am

  5. Hi,
    I am sorry you have to face such dumb criticisms on the internet. I face them too in my own seminars to health practicioners who believe in candida or macrobiotics-for-everyone. Softer, though, because we are in direct contact. Internet is like cars, you feel protected and feel like you can shout dirty words…
    I have just finished writing “Quand j’étais Vieille” about burn out and what is called ‘candida” overgrowth ( a whole chapter on it and the possible mistake in reasoning on the origin of it). I have a digital copy for you if you have time to read it. The introduction is on http://www.taty.be/vieille/pres.htm (“extraits”. The next one will be published (electronically again) next week: “Canaris de la modernité”, about Failsafe and superresponders etc. An introduction to practicioners so that they feel like digging more into the subject on your own website and on FAilsafe. Would you like to read a copy beforehand? I could send it on Saturday. Introduction is on http://www.taty.be/canaris/pres.htm.
    My previous books since May were: Du Gaz dans les Neurones about bowel diseases and Gottschall/Campbell’s work (they DO work on some types, I am sorry to say – http://www.taty.be/dugaz), Cinglés de Sucre about low-carb (not well know over here – http://www.taty.be/sucre) and Gloutons de Gluten (why nogluten nodairy is sometimes the wrong track http://www.taty.be/gluten).
    On Jan. 1st I leave the area of nutrition and start with horses. I will have left a few books with new areas to investigate. Hope people will pick on them. A naturopath in my seminars is going to write her thesis (last year of studies) on salicylate reaction and pathological detoxifiers… Great, isn”t it?

    tatylauwers

    19 December, 2008 at 6:37 am

  6. Thanks Taty. Good luck with the horses!

    alienrobotgirl

    8 February, 2009 at 7:42 pm


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