Autoimmune Thyroid Disease

An Unfortunate and Lengthy Adventure in Misdiagnosis

Personal Update

with 15 comments

Well our house sale fell through, so I’ll have to wait a while longer before I can get my Yasko genetic panel done. The first couple who were going to buy Fern Cottage pulled out after delaying their survey for about six weeks, for unknown ‘health reasons’. The next couple who were interested just pulled out the other week because they were worried about teenagers drinking in the park, which isn’t actually a problem now the park has been renovated and opened up. We hope the cottage sells soon, as we are pretty stretched paying for two mortgages at once. But if it doesn’t we’re thinking of setting it up as a holiday home, something that we should break even on. It would be nice to be able to keep the cottage as I love it so much, but also nice to have the cash to spend on our new house!

Jasper (also known as “The Beastly Beast”) is doing very well. He has been on a raw meaty bones diet since about a week and a half after we got him. We had to introduce raw food slowly as he seemed suspicious of it and rejected it in favour of cooked. Then one day I plucked up the courage to feed him a chicken neck and from that day forward he refused to eat anything except raw chicken, with which he became totally obsessed. It turns out he was suspicious of raw food because he doesn’t like beef, which is what we’d tried feeding him! I am still anxious about him not crunching up bones properly so I feed him by hand, keeping hold of one end of whatever neck, wing or thigh he’s eating to make sure it isn’t gobbled.

During the first couple of weeks his digestion wasn’t very good and he kept having bouts of constipation and diarrhoea, but after we got him on raw food that started to clear up. Apparently a lot of raw feeders give pumpkin to settle the stomach, and just a tablespoon a day did the trick, though we didn’t keep it up as the pumpkin gave him runny eyes. Dog biscuits also seem to have this effect so we don’t feed them. The only time he gets doggy junk food is when he’s visiting relatives! The only other bout of upset stomach he’s had was recently, when he started eating tinned (cooked) tuna, which he loves to bits but apparently it doesn’t love him. One plant food he does get on with that he loves is sweet chestnuts, and he has been sharing a few chestnuts with me for lunch. He learned to ‘sit’ and ‘beg’ for chestnuts.

He has a lovely sleek, silky, shiny coat. He didn’t when we first got him. He had a dull coat and dandruff, and he was being fed some dry junk food puppy chow. He was shaped like a barrel instead of a dog, with a big pot belly. I was worried when we first got him that he might have a bowel obstruction or bloat as his belly was so big. We fed him some dry mix during the transition to raw food. He started looking dog-shaped after four or five days, once they had been withdrawn. He also had a horribly strong ‘puppy’ odour. Sometimes his ears had that horrible sweet fungus-spaniel-ear smell. Once he was on raw food all smell disappeared altogether. His ears and teeth are totally clean, and now the only time he smells is if he is fed smelly food – like pork (pre-frozen to kill the worms) – in which case he smells of bacon the next day!

He has a slightly undershot jaw so I’ve tried feeding him cod liver oil and very expensive ‘activator X’ butter oil to try to correct it with vitamins A, D and K. To be honest it hasn’t made any difference so far. Withdrawing it hasn’t made any difference to the shine in his coat, so I think he’s getting plenty of omega 3’s from his raw diet. We’ll keep going and see what happens.

He’s had a few ups and downs. There was a while when he was really hyperactive and bitey and was driving us crazy. We couldn’t figure out what it was, but sometimes it was after food – especially tripe which is very very high in amines. Dogs have a high tolerance for rotten stuff (amines), unlike cats who must eat fresh meat, but there is still a tolerance level that can be exceeded. Eventually we figured out that he was eating ivy. Jasper has had a strange habit of eating garden plants ever since we got him. Not grass, but actual plants. Every time he went outside the back door, he was stripping ivy leaves from the plant overhanging the wall. Ivy is the only plant listed as causing hyperactivity in dogs! When I found out I went outside with a pair of scissors and manually cut down every single stem. The next day he was calm. Totally calm and perfectly lovely. He changed from being a baby crocodile for 8 hours of every day into being a baby crocodile for only one hour of every day! I think the little devil was addicted, because for several weeks afterwards he would make a charge for ivy tendrils whenever he saw them during his walk. He is still taking up a lot of my time – he needs plenty of supervision and a decent walk once a day.

I’ve started to try to claw back my time from my projects and obsessions. I recently realised I now have so many nutrition blogs in my RSS feed that it takes me most of a morning to work my way through them all, so I’m going to start jettisoning. I’d much rather read Perez Hilton, but he’ll have to go too.

I started writing a post today but I honestly couldn’t be bothered to finish it. This blog has been my aspie perseveration for almost two years now, but I’m getting bored. I’ve had a great number of wildly different obsessions over the course of my lifetime, none of which have lasted more than about four or five years. I kind of admire people who can stick with one thing for their whole life. I tend to run out of steam when I feel I’ve reached the limits of knowledge on a subject, and I’ve felt like that about this subject for several months now. I feel like I need some new challenges and I want to move on.

Also I’m just tired of the battle. I need to grow a thicker skin. I read several autie/aspie blogs and sometimes comment on them, but it’s very difficult to get across to people how crucial it is that they should try this diet for their physical symptoms or their children’s symptoms. Failsafe doesn’t ‘cure’ autism, but it makes a lot of the unpleasant physical pain/symptoms go away and makes you less likely to melt down, stim, or get upset about things. Failsafe hasn’t changed who I am, it’s just made me much calmer and more focused. And unless your genetics are totally up the wall, it does work.

I’m tired of caring about this but being ignored. I haven’t made the headway I wanted to with the Weston A. Price Foundation. I spent a lot of time last autumn feeling distressed about being invalidated and dismissed by people on the WAPF forums. I suffered from a lot of insomnia and stress purely because of horrible things people had said. This happened to me again recently when I dared to open my mouth again there, only to be shouted down by someone who regurgitates WAPF brainwashing and who has busily been undoing all the hours of hard work I put in to trying to get some acceptance for failsafe principles.

Also, after all the effort I’d put in to getting the message across to WAPF about the failsafe diet, I had hoped by now that they would have published something in Wise Traditions, but instead every time I open the latest WT I see something erroneous about the causes of colic, or how to manage ‘fussy eaters’ who won’t eat vegetables. I know full well that some of the most influential members still believe failsafers have ‘vitamin deficiencies’, not based on evidence but purely because it validates their world view. I have been thinking of leaving WAPF altogether since last spring because I’m so sick of the preconceptions and prejudices members have. I don’t think I will be renewing my magazine subscription, because I don’t think they will change, some of their members make me feel decidedly unwelcome, and I’ll be damned if I’m the one who’s going to compromise.

There’s a similar story going on in the low carb community. People just aren’t open minded. Low-carbers fixate on carbohydrate as the source of all the world’s health problems, and it just isn’t so. For ages I was fed the message that ADHD was caused by sugar, which pretty much put me off the scent of the failsafe diet.

I imagine I’ll still blog now and then, but I want to start tying things up with a bow. I have about twenty posts or so that I haven’t got around to finishing, along with commitments on the FailsafeNT forum. I also feel like I need to make several posts about Yasko’s genetic panel. Taty has suggested I write some posts clearing up my stance on a few things, like the validity of low carbohydrate diets, and I think that’s a good idea.

I want to focus on getting the Plant Poisons and Rotten Stuff information website up to date. I have been putting off doing this for months as I get huge writer’s block as soon as I have to write anything important or ‘official’ and I feel like banging my head against a wall. Writer’s block has been stopping me from writing a novel for the last decade! I was supposed to start writing that novel two years ago, but instead I started doing this, and thank goodness I have a partner who is understanding and has supported me while I try to get to the root of my problems. I hope that instead of blogging here, I can plough what remaining energy I have on this subject into the information website instead.

What I really want to do is write that fantasy novel I keep threatening about. Apart from the day-to-day looking after of a small furry brown puppy, the novel is all I think about at the moment. So I have to go away and try and work out this writer’s block and not have blogs in the way as displacement activities.

I’ll be posting again with a progress update in the new year!

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Written by alienrobotgirl

3 December, 2007 at 10:49 pm

Posted in Personal Diary

Tagged with , ,

15 Responses

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  1. Too bad about the luck on selling the house, but at least Jasper is doing well. Speaking of NN, there was mention there today of a book called “Gut and Psychology Syndrome” by Dr Natasha Campbell-McBride. I searched for her name on your blog but it came up empty. Have you perchance read her book?Here’s a link to info:http://www.behealthy.org.uk/books.htmAnd here’s an article she wrote:http://www.behealthy.org.uk/gaps.pdfMight be a good future blog topic to add to your long list :)Bryan

    Bryan - oz4caster

    4 December, 2007 at 2:53 am

  2. Thanks for the update. Sorry to hear that the house sale fell through. Things like that are massive stresses.I really enjoy reading this blog, but if you are finding that it it no longer fun to do, then dump it. It is easy for me to get obsessive about things too and as you note suddenly it becomes a chore. Your health and happiness comes first. Arguments on the forums and mail lists are maddening too because they rarely seem to get anywhere – as you say everyone is working form their own assumptions and rarely do they do the work of researching things a bit.CheersChris

    Chris

    4 December, 2007 at 7:08 am

  3. Aww, i’m sad to hear about the ignorance you have been put through.But I think you’ve helped more people than you realise and I hope you continue blogging. I’ve personally had a lot of success with introducing the concept to people. Sure, they don’t want to do the diet (and there’s some very interesting psychology if you ask them about it) but they’re accepting of the problem and I can help them if they want it. I think you are targeting the wrong people – there are people who will listen, but they will always be individuals.In any case, I need your help to get through my messed up genetics!

    Elena

    5 December, 2007 at 10:10 am

  4. I’ll miss reading your posts! I’m glad you’re going to keep the website going because many of us that are also trying to spread the word tend to link to it. Even some of the USA failsafers have begun linking to it! :o) It’s one of the easiest failsafe sites to sort through. Sorry that I haven’t chatted more with you in recent months. 2007 has been about the most insane year of my life! I’m looking forward to settling down again once we move in a few weeks. :o) I’m also hoping to finally do the diet properly! Steph

    Anonymous

    5 December, 2007 at 8:34 pm

  5. You’re cottage is beautiful!! :o)Steph

    Anonymous

    5 December, 2007 at 8:37 pm

  6. Your cottage is really cute, I love old buildings, they have so much charm, your very lucky! Good luck with your novel ๐Ÿ™‚

    Sherrie

    10 December, 2007 at 10:45 am

  7. FWIW…I for one am glad that you took the time to post on one of the NT yahoo groups. Thanks:)Valerie

    Anonymous

    29 December, 2007 at 5:58 pm

  8. I’m a bit gutted that you won’t be blogging here much, anymore, since practically everything I’ve ever learned about nutrition (that ended up being true), I learned from you. However, I’m consoling myself with the idea that I’ll get to read your novel one day. :)Don’t disappear entirely! Annabelle

    Mother Nuture

    5 January, 2008 at 1:25 am

  9. Hi BryanI haven’t read the book and it sounds just like a dozen other books I have no desire to read. Anyone who describes ASD/ADHD as an ‘unfolding epidemic’ rings my quackometer before we even start.I have personally done SCD, probiotics, prebiotics, weird fermented foods, etc etc to death. I have recommended them to others who I was convinced at the time their GI symptoms ‘must’ be caused by ‘dysbiosis’. Hundreds and thousands of failsafers have tried hundreds probiotics and fermented foods. The feedback I can give you from all of these trials is that gut bacteria have NOTHING WHATSOEVER to do with ASD/ADHD/fibromyalgia/etc. All of these trials have failed, having only succeeded in giving failsafers unpleasant amine/glutamate reactions from so-called ‘beneficial’ bacteria.This appears to be another diet based on a false premise that ‘works’ by cutting out junk food (i.e. additives), gluten and casein.I feel sorry for the woman who had this book recommended to her as her child clearly had food chemical intolerance, though I am not surprised by who recommended it. Some people pursue a pet theory long after they should have given it up as a false cure and tried something new.I no longer post on or read native-nutrition due to the sheer amount of crazy and aggressive people who are there. Perhaps when you spot an obvious case like this you could mention failsafe to them?

    Alien Robot Girl

    30 January, 2008 at 3:46 pm

  10. Thanks for the reply. I kinda had a gut feeling you were gonna say that :)Do you believe gut microbes play any significant role in our development as children and in our health as adults?Do you think vaccines and/or antibiotics could help to trigger autism/ADD/ADHD in children?Do you believe there really has been a large increase in autism in recent years, or as my wife suggests, could it be that it was just called by a different name in the past, but was just as common?Rather than reply here, this might make a great blog or web site post – hint, hint :)BTW, I started a rather long thread “Wise Traditions – GAPS” on NN that begins with this message and discusses the recent Winter 2007 Wise Traditions GAPS article and book. I’d love to hear your side of the story ๐Ÿ™‚

    Bryan - oz4caster

    31 January, 2008 at 2:48 am

  11. Hi Bryan,I’ll get around to blogging on this subject when I have some spare time. Rest assured it will be scathing.Thank you for letting me know there was an article in Wise Traditions on this subject. No wonder GAPS is the latest religion on native-nutrition. I didn’t know about this as I have received a grand total of one (1) WT issues this year. I don’t know where the rest went, but I don’t have any problems receiving any other post from the states.I feel fairly betrayed/burned/badly treated by native-nutrition members. On top of that, if this is Sally Fallon’s response to failsafe, it’s the final straw in a long list of final straws, and it marks the end of my journey with WAPF.Feingold has been around since the sixties, failsafe has been curing ADHD and autism since the early 1980s. WAPF’s response: resounding silence. Yet one crackpot doctor gets the idea it’s all about probiotics and it deserves a big article in Wise Traditions. Thanks a bunch for your openmindedness WAPF, this attitude put me off the scent of failsafe for at least two years, during which I suffered considerably. I used to think WAPF didn’t know about failsafe or feingold. Now I’m pretty sure they did, they just didn’t like the diet because it doesn’t fit very neatly with the WAPF religion.Briefly:1. I think gut microbes might make about a 5% difference to our overall health, if that.2. Anyone still peddling the vaccination/mercury/antibiotics/whatever paranoia theory of autism/ADHD needs a lesson in science.3. Autism is genetic. The ‘increase’ in autism is caused by: 1) Awareness of the condition influencing diagnosis – and is largely due to a broadening of the definition to include people who were formerly considered normal who have asperger’s syndrome. 2) the vastly increased quantities of food flavour chemicals (natural and artificial) in the modern diet causing individuals with only moderate genetics to fall foul of their effects. 3) Possibly, theoretically, a slight increase in homozygosity over the last century due to people selecting partners based on personality (autism genes are personality genes) rather than for economic/social/political reasons.

    Alien Robot Girl

    31 January, 2008 at 3:18 pm

  12. It seems the more I read about health, the more complicated I see that it is – extremely complicated. It reminds me of the story of the blind men and the elephant – each person has their own perspective, but to truly learn about the whole, we have to consider everyone’s perspective. Sorry to hear you’re not getting your copies of Wise Traditions. Chris Masterjohn has an interesting article on “Vitamins for Fetal Development” which I haven’t finished reading. I wonder how much mom’s nutrition before and during pregnancy may affect children’s tendencies towards ADD/ADHD/autism? BTW, I have gotten the impression that Chris is very receptive to your perspective. WAPF is pretty diverse and will evolve over time, hopefully for the better. Of course, you can always do an Anthony Colpo and be independent ๐Ÿ™‚

    Bryan - oz4caster

    31 January, 2008 at 6:02 pm

  13. To extend the amusing metaphor, the elephant happens to be the elephant in the room that makes a number of WAPF principles very problematic, that is why WAPF can’t accept failsafe.I and many other failsafers have poked the probiotic particular part of the elephant extensively. The Dengates have travelled all over the world trying various rare probiotic concoctions. Only after extensive poking have I come to the conclusion that yes, I really am holding the trunk of an elephant. Failsafers have the advantage over non-sufferers in that they have their entire lives in which to poke at the elephant.Meanwhile WAPF members are obsessively poking at the elephant’s belly and listening to it gurgle.How on earth could I have already guessed that an article on vitamins for foetal development be a future article for Chris? I hope he characterised his MTHFR polymorphisms properly. The last time he ‘corrected’ me on native-nutrition he got his facts wrong.I made a post on epigenetics and autism last summer. It is an unbiased depiction of the situation.I will avoid making any wry remarks about independent diet gurus.Forgive me if I sound a little sour. I really have had enough of WAPF.

    Alien Robot Girl

    31 January, 2008 at 10:19 pm

  14. LOL! Well I’m glad you have a sense of humor. I suspect conventional medicine has got a hold of the tail and won’t let go. No wonder they raise such a stink :)You’re not the only one to become disenchanted with WAPF. Several on NN have said they quit. I don’t believe WAPF is perfect, but I think their message is still more good that bad for most people. Do you agree with the basic conclusion in NAPD that the healthiest people have animal seafoods or organ meats or dairy as part of their diet?I re-read your post on epigenetics and autism to refresh my memory. If unusual mutations are observed in autism, could some portion be from modern environmental influences on the parents or the child?

    Bryan - oz4caster

    1 February, 2008 at 1:11 am

  15. Hi Bryan – I hope I’ve clarified the new mutations issue in my latest post.

    Alien Robot Girl

    7 February, 2008 at 9:11 pm


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