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OnyxCougar 08-03-2009 12:19 AM

but...

cheeeese.....

Clodfobble 08-03-2009 11:24 AM

I know, tell me about it.

It is possible to sneak things while they are at school--but its better to go out of the house to a restaurant or whatever to get it, or else they will certainly hunt it down and eat it in the middle of the night.

Pie 08-03-2009 12:28 PM

Speaking as a insulin resistant person myself, let me plug the quinoa. Great, great stuff. It's my go-to for rice replacement.

OnyxCougar 08-03-2009 03:44 PM

do you make it just like rice, pie? what's it taste like? can I get it from the grocery store?

i use soy flour for most my flour needs, and crunched up pork rinds for breading. I haven't been worried about fat or calories, just carbs, and I've lost 15 pounds in 3 months, doing NOTHING differently but keeping carbs to 150g per day.

Now that there are all these studies (and clod's own positive results) with the GFCF thing, I'm really considering trying it. But I know for a FACT that my husband is not going to go for removing cheese. we go through about 3 lbs of shredded "fiesta" blend, a container of parmesean, a block of slices, and a 24 pack of string cheese per WEEK.

Clodfobble 08-03-2009 04:01 PM

Does he do the grocery shopping? Not much he can do about it if he doesn't. :) Seriously though, Mr. Clod was resistant too, but as long as dinner tastes good, he just kind of stopped noticing that it never happened to have dairy in it... plus he gets his fix while he's out at work. It's really about how resistant your son will be, and how determined he'll be to hunt down dairy if you take it away. Maybe your husband can keep a minifridge out in the garage with a lock on it.

Pie 08-03-2009 04:50 PM

Yep, you can make it like rice -- either 2:1 water-to-grain in a rice cooker or on the stove, or boil in lotsa water till it's cooked enough, then drain. I prefer the latter method myself, as it has a tendency to stick when cooked in my old scratched up rice cooker.

It tastes a little nutty, I think. I have successfully made several great pilaf dishes with it, and tabbouleh (as a sub for cracked wheat) and generally to backstop stir-fries and curries.

Keep in mind that it's not a 'low carb' grain though. It's low glycemic, but not low carb. And it's not wheat. ;)

OnyxCougar 08-03-2009 09:09 PM

i went to this WONDERFUL store today to look for it and it was FIFTY TWO grams of carbs for a 1/2 cup!! 52!

My dietician says low glycemic or not, my carbs have to stay at 150 below, not "net carbs" or fibre carbs, but total carbs. Period.

*sigh*

Clodfobble 08-03-2009 09:17 PM

I guess I don't understand. If you're already eating that few carbs... what are you eating that does have carbs? It would seem to me like you're already the majority of the way there. All you'd have to do is give up dairy, not hunt for carb substitutes, because you're already not eating carbs, right?

OnyxCougar 08-03-2009 10:36 PM

Yeah, but my diet right now is meat and cheese, with fruits and veggies.

Most of my carbs are fruit/veggie based.

Example of my day, today:

Low carb slim fast. 6g
2 sticks string cheese for snack. free
4 wasa crackers + lunch meat and deli cheese, 45g
flavored water, 3g
snack: 1 green apple + cheese or strawbs and truvia + cheese or 1 cup cheese puffcorn. 15-20g
dinner: 2 pieces of fish, big slab o watermelon, 20g OR 1 low carb tortilla with chicken breast + cheese and hot sauce, 25g.
dessert: 4 blocks dark choc with orange peel: 20g OR more fruit (stawbs, melon, apple), 15-20g

Clodfobble 08-04-2009 10:36 AM

Well, I can't find a replacement offhand for a slim fast drink. Carnation instant breakfasts are gluten-free, but I haven't found yet whether they'd be dairy-free. I also don't know how the carbs would line up. (But then again, if your son's not drinking them, and doesn't want to drink them, you could just keep them for yourself.)

The snack could change to anything like carrot sticks, celery with peanut butter, pickles, coconut/soy milk yogurt.

I don't know what wasa crackers are, but these are a good GF cracker substitute, then just make sure the lunchmeat is a gluten-free brand and use a dairy-free dressing (probably something mayo-based) instead of cheese.

Your second snack is already good if you just take away the cheese--substitute peanut butter for the apple, or coconut/soy yogurt. Instead of cheese puffcorn you could try these.

Fish and watermelon are okay, and there are gluten-free tortillas. I can't remember the brand name right now, but they're rice-based.

I don't know about your particular brand of dark chocolate, but there are several dairy-free options for chocolate as long as it's not specifically "milk chocolate." And of course more fruit is always okay.

Clodfobble 08-05-2009 09:33 AM

Got another video of his progress posted last night.



The name thing is a particularly huge step. It's hard to explain, but it's kind of like an acknowledgement that there is him, and there is the world, and admitting they are separate is the foundation to social interaction. And aside from the awareness of identity, it's also a direct response to a question that has no practical purpose other than social interaction. "What's your name?" is actually a terrifying question to many autistic kids.

Clodfobble 08-06-2009 12:21 AM

I lost a friend this week. Not a good friend, but an old one, someone I've known since 7th grade.

We haven't kept in touch very well, and when we have gotten the chance to, it's been obvious (to me anyway) that we have less and less in common each time. She's been going to medical school, and is just now finishing up her fellowship as a child psychiatrist. I've worked several vastly different jobs, gotten married, had some stepkids, had some kids; and she's... been in medical school some more.

When she emailed me out of the blue the other day, I knew exactly how it was going to play out, but I couldn't stop myself. She's a child psychiatrist. Her whole career is (I was guessing, and I was right) completely devoted to believing the exact opposite about my children's condition than I do. She asks, "So what's been going on in your life?," and my only options are 1.) bald-faced lie, don't even mention my kids have been diagnosed and pretend I've been skipping along happily these last seven months; 2.) tell her what's been going on, but leave it at "they're showing a lot of improvement" and let her believe it's due to whatever she wants; or 3.) tell her.

Number 3 is the only ethical choice, as I see it. I feel an overpowering need to tell people what I know, what I see happening before me every day, because it is a freaking crime that people, especially medical professionals, don't know it. The debate of what causes autism aside, people must be told that there are treatments, that children can and do recover from this nightmare. And yet, I know that no one will let you put the causation debate aside, because there are only two sides--either autism is completely genetic, and there is no recovery; or it is caused, and there is recovery. Any acceptance of the possiblity of recovery by definition puts you in the camp with the crazies.

So the question became, "is this friendship worth it? Do I care enough about it to keep my mouth shut, or do I let it fall victim, knowing that every parent that stands up to her is one more drop in the eventual flood, and maybe as an old school friend my word might even count as two or three drops before she permanently writes me off?"

Well, the answer was no, this friendship was pretty insignificant as far as those things go, so I went with my conscience. I told her, in a very casual and optimistic way, what a truly miraculous change we've seen with biomedical treatments. And as I expected, she has not replied. (And no, there is no chance this is just a delayed response--when we catch up with each other, we always get at least 8-10 emails back and forth in the course of just a couple days, before drifting apart again for another year or two.)

But like I said, I'm not really upset about the loss of this friend. The real problem is that I'm not sure how far I'll go. My relatives and three close friends have been supportive, but I've studiously avoided the topic with everyone else I know (which to be fair, isn't that many people,) because I'm sensing a big self-destructive streak in all this, and I can't figure out what's ethical and what's me just slashing and burning my old life out of frustration with this new life I didn't ask for. I spend all my social interactions now desperately hoping that the topic doesn't come up, so I don't have to find out how many friendships I'd be willing to sacrifice. I'm pretty sure the answer is "any and all," because I just can't handle any negative people in my life right now. Seriously, who wants friends who feel compelled to basically call you a liar to your face?

ZenGum 08-06-2009 12:27 AM

Does your friend have an open mind? Does she at least respect your intelligence and experience?

If the answer to both of these questions is "no", well, it is regrettable, but you aren't losing much of a friend. You did better to keep your conscience and integrity, IMHO.

Clodfobble 08-06-2009 12:33 AM

Well, her lack of a response would seem to indicate "no." :) The problem is, I've found that many, many people who would otherwise respect your intelligence and experience are ridiculously quick to write you off once you join the "wrong" side of the debate. You're right, I don't want those people as friends... but on the other hand, I do kind of want at least some friends.

xoxoxoBruce 08-06-2009 12:44 AM

Send her a link to this thread. It's all documented her, including people questioning your views and proof of your progress.

And what good are friends if you can't borrow ten bucks or get 'em to babysit. :haha:

Queen of the Ryche 08-06-2009 12:02 PM

Well it sure seems you have a ton of virtual friends backing you up right here. We have all seen the progress - how can we possibly dismiss it when we've all seen the proof? I say send every doubter a link to this thread, and if they still don't believe, tell them to Eat A Big Bowl of D*cks.

Clodfobble 08-06-2009 12:13 PM

Quote:

Originally Posted by xoxoxoBruce
Send her a link to this thread. It's all documented her, including people questioning your views and proof of your progress.

I already sent links to the videos in my email to her. You've got to understand, she's a child psychiatrist, she's not going to be convinced by any amount of evidence on this topic. You guys are way, way more open-minded than the rest of the population, I assure you. And don't kid yourself, the only difference between my friend and, say, UT or Happy Monkey, is that those guys are willing to politely make an allowance that maybe dietary stuff has had some impact specifically on my one child, they just maintain it in no way translates to a larger causation fingering vaccines. But the people who have done the research, on both sides of the debate, know that halfway-house theory can't stand on its own. If the diet works, vaccines play a role. They know it, we know it. Think about it: why else would anyone fund studies to prove that autistic children don't have a higher incidence of digestive problems? That's really the most important avenue they can think to explore? Unless of course the dietary link is more important than it appears to the average person--and it is. That's why they steadfastly cannot discuss or accept biomedical treatments in any way, shape or form. It doesn't matter how many videos I have of my son, or whether we even attain the holy grail of getting his neurologist to admit in the next year or so that he no longer qualifies for a diagnosis of autism--which he will only do couched in terms of, "well he must never have had autism to begin with," you mark my words--they will not believe. Because if you believe even one iota of the diet, if you believe that my son has made even one single step forward due to anything other than behavioral therapies, then you've stepped into the vaccination mud.

You may note that TheMercenary, the only medical doctor on this board that I'm aware of, is supportive of my general situation, but has not chimed in with regard to my son's alleged improvement. And based on his posts in the Vaccination & Epidemic thread, I'd say he's actually one of the more open-minded doctors I've met. He at least takes the line of "nothing's proven, we need more research," rather than "we have 16 studies on it and that's all we'll ever need." But let's ask him: have biomedical treatments improved my son's condition, or not? He will not give you a straight answer. None of them will, because they know exactly where that line of thought leads.

Queen of the Ryche 08-06-2009 12:37 PM

I don't understand why doctor's are so anti-biomedical treatment? Is it because then their cohorts won't get paid for therapy and prescriptions?

And I understand causation is VERY important to discover, but in the meantime, THE BIOMED ROUTE IS WORKING FOR GID. LOOK PEOPLE! WHO GIVES A RAT'S ARSE WHAT CAUSED IT AT THIS POINT - IT'S WORKING.

/rant off.

Clodfobble 08-06-2009 12:44 PM

Quote:

Originally Posted by Queen of the Ryche
I don't understand why doctor's are so anti-biomedical treatment?

Because it invariably leads to the conclusion that vaccines are playing a role in triggering/worsening autism. If biomedical treatments gain wider acceptance, vaccination rates will plummet. And while they may or may not scramble to find ways to make the vaccines safer, it will be decades before vaccination rates go up again, and in the meantime children will be dying of measles and pertussis again. I've even talked to some doctors who do genuinely believe that vaccines do cause autism--but they still figure 1 in 100 kids being autistic is better than 1 in 1000 babies dying of measles.

Queen of the Ryche 08-06-2009 12:52 PM

Holy Hell. It's a no-win situation then. Friggin politics to sell more vaccines. Amazing. My sympathies, and keep fighting the good fight. You're a much stronger woman than I.

BTW, I've recently been in touch with an organizaiton called Best Buddies, that sets up one on one friends for those with special needs, learning disabilites, etc. including autistics. I'm working on getting a program going here in Colorado - I'll keep you posted.

Also the friend whose autistic son started piano lessons: the teacher said he has perfect pitch. When she plays he hums along. He's now learning to play chopsticks on his own.

jinx 08-06-2009 01:01 PM

Quote:

Originally Posted by Clodfobble (Post 586325)
but they still figure 1 in 100 kids being autistic is better than 1 in 1000 babies dying of measles.

I know you're just making a point, not about the actual numbers.... but just for the record we were down to 0.2 per 100,000 just prior to the measles vaccination introduction.

Clodfobble 08-06-2009 01:04 PM

Ah well, there you have it. 1 in 100 kids being autistic is apparently better than 1 in 500,000 kids dying of measles. That also assumes that the treatment of measles will have improved in no way since 1968.

Undertoad 08-06-2009 01:12 PM

I think I can participate in this thread in the social matter --

Loss of friends over changes in one's belief system? Let me tell you my story. For many years, I was a hardcore Libertarian and worked inside the L party to try to develop it and to angle politically. My then-wife was 100% with me on that, and so most of our friends were fellow L party travelers and their associates who enjoyed the ride.

After a decade of believing and working and developing friendships, I began to realize that although it had many good points, the hard core libertarianism also had deep flaws as a school of thought. Once I started to be at odds with some of the oft-repeated mantras, it all sort of broke away and over a period of two years I found myself no longer in the group-think.

Then, as a result, I lost most of my friends over a period of that two years. And it was also probably the first crack leading to my divorce -- although I consider the divorce the best thing to happen, so I'm not sure that matters so much.

One of my current best friends (and being all anti-social, I have like six friends, and two I'd regard as "best") is one of the hardest-core libertarians in the country. But just like I learned about marriage, real friendship overrides philosophy somehow. The disagreements become part of why we're friends.

Do I have a conclusion here... no I guess not... but I should say, Clod and this goes for you jinx too, although I am not directly in your belief system, I want to remain efriends, because to me you are beautiful people and when it comes to beliefs, we all struggle to understand, the struggle is the beautiful part. And intellectual honesty requires me to admit I may be wrong, as well so what does it matter?

Clodfobble 08-06-2009 01:23 PM

I wish all my friends saw it that way, Toad. :) It would also help if the disagreements I have with them were more philosophical and less concrete. If you watched some libertarians physically hurt your child, and then deny it ever happened, it would take on a whole new light. I can still be friends with people who continue to raise their own children as libertarians, but I'm still taking my kid to the hospital, even if it's run by fascists.

jinx 08-06-2009 01:50 PM

Quote:

Originally Posted by Undertoad (Post 586339)
Do I have a conclusion here... no I guess not... but I should say, Clod and this goes for you jinx too, although I am not directly in your belief system, I want to remain efriends, because to me you are beautiful people and when it comes to beliefs, we all struggle to understand, the struggle is the beautiful part. And intellectual honesty requires me to admit I may be wrong, as well so what does it matter?

The topic is fascinating to me... and infuriating... I get obsessed with it. I've been reading about it for 10 years and have no real answers.
I'm ok with disagreeing for the most part UT. Fuck, if I'm wrong, and vaccines are harmless and the greatest medical advancement ever - well that's good news isn't it? I could make a Dr. appointment and get my kids all shot up and move on, knowing they are the picture of health.

If I'm right though, well that thought is pretty terrifying.

Flint 08-06-2009 01:56 PM

:::kicks Undertoad in his stupid balls:::

Clodfobble 08-06-2009 11:25 PM

Allergy test results came in the mail today, by the way.

Quote:

Originally Posted by Clodfobble
Incidentally, Minifob's allergy blood tests will be back in soon. I'll let you know if they confirm my personal finding that he has a correlated behavioral reaction to coconut, peaches, oranges, cashews, peanuts, egg, and tomatoes. (And just for the record, I'm predicting Minifobette's blood tests, when she gets them in a few months, will show a reaction to pears, peaches, oranges, cherries, mango, kiwi, and pineapple.)

Coconut: yes
Peaches: no
Oranges: yes
Cashews: yes
Peanuts: double yes (get to that in a minute)
Egg: double yes
Tomatoes: yes

I am quite frankly stunned that peaches came up negative. I am now certain that they would mark positively on an IgE panel, however. Here's the thing--there are IgG allergies (officially known as "sensitivities") and IgE allergies ("true allergies.") The two big differences are 1.) IgG causes digestive distress, while IgE is the typical itchy eyes/rash/wheezing/sneezing response, and 2.) IgG can fluctuate over time, and a damaged digestive system is going to react poorly to more things than a healthy one, so there is a chance to heal, while IgE is usually a lifelong immune dysfunction. Both can cause behavioral symptoms.

Because the assumption behind all of this is that we're more concerned with digestive problems, they do a comprehensive IgG panel for 118 different foods, and an IgE panel for the most common allergens, plus any you choose to add. (You can add as many as you want, but it's $7 per food, so it's best to be moderate.) Minifob's tests came back with both an IgG and an IgE reaction to eggs and peanuts, but peaches weren't on the IgE panel, only the IgG.

Anyway, what is really useful about all this is not confirming what I already knew, but alerting me to things I didn't know. The number one highest-ranked allergen, almost off the scale? Garlic. Go figure. I'll have to check the seasonings on a few of his chips, but as far as I know he's not eating any garlic anyway. Other very high results (everything's on a severity scale, the above suspected ones were also all in the highest range):

Things he won't eat, or has never had: Cantaloupe, Honeydew, Watermelon, Carrot, Green Peas, Lentils, Safflower, Cottonseed, Flaxseed, Walnuts, Hazelnuts, Brazil nuts, White Beans

Gluten, Oats, Rye, Wheat: no shocker there

Sesame: there are small amounts in one type of GF pretzel he eats
Mustard: sometimes has a small amount on hamburgers

Pinto beans: this one's the kicker. He eats pinto beans (in the form of refried beans) every single freaking day, sometimes twice a day. I'd have no idea if it were making him worse than he could be without it, because he's never without it. I'm pretty sure I've seen refried black beans at our grocery store though, so I'll switch him out and see what happens.

There's a handful of others in the lower ranges, but I'm not going to worry about those for now. We're totally safe with corn, chickpeas, most fruits and vegetables, and all meats, so I'm happy about that.

xoxoxoBruce 08-07-2009 12:30 AM

The more you know, the better equipped to do what's best, and less likely to be blindsided. You go, girl.:thumb:

ZenGum 08-07-2009 01:22 AM

I am amazed by both the irrationailty and dogmatism described in Clod's post #437 (not Clod's, the position she is describing).

Maybe Autism is caused by genes, maybe vaccination, maybe both, neither, mixtures, other etc.

Maybe is treatable by diet, maybe behavioural therapy, maybe both, neither, mixtures, other etc.

As far as I can see, there is NO necessary connection between treating it with diet and believing it was caused by vaccination. These beliefs may often be found together, but they are conceptually independent.

It amazes me that anyone, especially a helath professional, could be so dogmatic. Medicine is an empirical science. Try things, see if they work.

There is widespread evidence - largely anecdotal, but lots of it - that diet helps. That is perfectly compatible with autism being genetically caused. What is so hard about that?

OnyxCougar 08-07-2009 12:56 PM

Clod, regarding the allergy tests, have all of you in your family gotten this testing? I am interested whether or not perhaps these sensitivities and allergies are present in sibling/parents. And I wonder how many of us have these s/a on a lower scale, but we just never find out?

I'm sorry you lost your acquaintence. I don't want to see you isolating yourself from others in the "real world" (as opposed to us, your e-friends) because that sense of disconnection will wear you down faster than if you had a better support group. Not that we're not your support group. *sigh* You know what I mean.

Clodfobble 08-07-2009 05:01 PM

Quote:

Originally Posted by OnyxCougar
Clod, regarding the allergy tests, have all of you in your family gotten this testing? I am interested whether or not perhaps these sensitivities and allergies are present in sibling/parents.

It's been shown that siblings and parents are more likely to have allergies (and other immune disorders) in general, as well as more likely to have digestive disorders. Colon cancer, specifically, runs very commonly in families with autism--I've had two direct relatives die of it--and they also think in a lot of cases that people who die of colon cancer may have actually been undiagnosed celiacs.

But as for whether we've been allergy tested, no, we haven't bothered with it. A doctor has to order the IgG test out of a specific lab, and most GPs and other family doctors would rather refer you to an allergist than commit to some lab they've never heard of. And allergists are always focused on IgE sensitivities, because digestion is simply not their expertise. The allergist we saw for my daughter at the beginning of the year told me, "Well, whatever you think she's reacting to, just take her off of it." He basically refused to do any significant testing on her. My kids' doctor isn't going to make non-autistic adults patients just to order some tests for us. Usually, to get an IgG test ordered, you have to go to an osteopath or a naturopath, because they're the ones who buy into the whole digestion-is-crucially-important concept of health. So we'd have to go find a whole new doctor to visit, and of course pay for the test out of pocket (insurance doesn't like this sort of broad shotgun testing without "reasonable" medical cause.) Not worth the effort, since we're obviously not having inexplicably recurring diarrhea, so whatever sensitivities we may have can't be that bad. :)

Clodfobble 08-16-2009 07:57 PM

Well thank God that's over.


Last month when we reviewed Minifob's initial lab tests, you may recall that they showed a bacterial as well as a fungal infection in his digestive tract. So he was prescribed first an antibiotic, to be followed by an antifungal. But fungus is a fighter, and a standard course of antifungal drugs is 21 days, so add that to the 10 days of antibiotics and we've just now finished going through those two medications.

On the antibiotic, he was great. Moderate improvement in all areas. Hooray! Then, we started the antifungal, and he was immediately nasty. This was okay, because it's expected: part of fungus being a fighter is that it immediately and aggressively spores outward if something is killing the colony. So when treating any fungus (skin rash, vaginal yeast infection, whatever,) the symptoms will get a little worse before they get better. But he didn't get better. There were a few random tolerable moments, but for the most part he was hyperactive, emotionally unstable and generally defiant for basically the entirety of the last three weeks. Plus, his language went down the toilet. It was pulling teeth just to get him to use nouns, forget about the complete sentences and spontaneous speech he had been tossing about with ease before we started this treatment. This was, as you can imagine, incredibly demoralizing for me, as he basically lost everything we'd gained over the last three or four months.

But Friday night was the last dose of the antifungal, and today he's back! Happy, polite, and talking up a storm. I wouldn't say he's better than he was before we did the antifungal though, at least not yet, and that's a bit of a problem. I'm pretty sure they're going to tell me that the fact that he never "broke through" and got better while on the antifungal means that he still has a lingering fungal infection. But at the very least they can't tell me that until we go in for our next followup appointment, so I'm safe for another 2 and a half weeks... and in the meantime I have a good kid again, just in time for Flint and Pooka to meet him!


And in Minifobette's news, her initial appointment has been scheduled for September 29, so in the meantime we're left to continue experimenting on our own. One thing we've discovered is Undertoad may have been indirectly right about the calcium gummies--just a few days after her random burst of speech, most of the gains were lost again. So I was left floundering with this new data, until a few days ago when I accidentally forgot to add the new calcium supplement (a pure powder) to my most recent batch of waffles, where I had started sneaking it in so we had one less vitamin to deal with at night. Minfob's just been getting the powder mixed in with the rest of his vitamins until we can use up this calcium-less batch, but I hadn't managed to get Minifobette started on anything yet--and suddenly her language is making huge gains again. Based on this, my best guess is it would seem she has a problem with calcium itself. Online searching brings up a few anecdotes of autistic kids who were unable to process excess calcium, and buildup can cause a host of health problems, including things like kidney stones. So we're just going to keep her off of all calcium supplements for awhile, and hope that her little dairy-free bones don't start snapping like twigs if we happen to be wrong. :)

Undertoad 08-16-2009 09:43 PM

:::kicks Flint in his stupid balls:::

:::exits thread again:::

monster 08-16-2009 10:17 PM

[aside] Do other people have smart balls? I find that idea scary and yet a little enthralling at the same time [/aside]

Pie 08-16-2009 11:04 PM

Monnie, for some guys, it's the only brains they got. </snark>

Clod, hopefully they'll test her for serum calcium levels too. Do your kids get daily sunlight? Vit. D3 is crucial for calcium usage in the body.

Two steps forward, one step back. But still, it's progress! :thumb:

Clodfobble 08-16-2009 11:19 PM

Quote:

Originally Posted by Pie
Clod, hopefully they'll test her for serum calcium levels too. Do your kids get daily sunlight? Vit. D3 is crucial for calcium usage in the body.

They do go outside pretty much everyday, and usually upwards of 30 minutes (although a decent amount of that is in the shade...) But insufficient presence/production of Vitamin D is one of the more common problems, so they may have us supplement it after they've tested her levels, I don't know.

OnyxCougar 08-19-2009 09:36 AM

source

Clod, just so you know, being on a Gluten free diet, or even trying to eat healthy foods, is now considered a mental illness.

Quote:

Eating disorder charities are reporting a rise in the number of people suffering from a serious psychological condition characterised by an obsession with healthy eating.

The condition, orthorexia nervosa, affects equal numbers of men and women, but sufferers tend to be aged over 30, middle-class and well-educated.

The condition was named by a Californian doctor, Steven Bratman, in 1997, and is described as a "fixation on righteous eating". Until a few years ago, there were so few sufferers that doctors usually included them under the catch-all label of "Ednos" – eating disorders not otherwise recognised. Now, experts say, orthorexics take up such a significant proportion of the Ednos group that they should be treated separately.

"I am definitely seeing significantly more orthorexics than just a few years ago," said Ursula Philpot, chair of the British Dietetic Association's mental health group. "Other eating disorders focus on quantity of food but orthorexics can be overweight or look normal. They are solely concerned with the quality of the food they put in their bodies, refining and restricting their diets according to their personal understanding of which foods are truly 'pure'."

Orthorexics commonly have rigid rules around eating. Refusing to touch sugar, salt, caffeine, alcohol, wheat, gluten, yeast, soya, corn and dairy foods is just the start of their diet restrictions. Any foods that have come into contact with pesticides, herbicides or contain artificial additives are also out.

The obsession about which foods are "good" and which are "bad" means orthorexics can end up malnourished. Their dietary restrictions commonly cause sufferers to feel proud of their "virtuous" behaviour even if it means that eating becomes so stressful their personal relationships can come under pressure and they become socially isolated.

"The issues underlying orthorexia are often the same as anorexia and the two conditions can overlap but orthorexia is very definitely a distinct disorder," said Philpot. "Those most susceptible are middle-class, well-educated people who read about food scares in the papers, research them on the internet, and have the time and money to source what they believe to be purer alternatives."

Deanne Jade, founder of the National Centre for Eating Disorders, said: "There is a fine line between people who think they are taking care of themselves by manipulating their diet and those who have orthorexia. I see people around me who have no idea they have this disorder. I see it in my practice and I see it among my friends and colleagues."

Jade believes the condition is on the increase because "modern society has lost its way with food". She said: "It's everywhere, from the people who think it's normal if their friends stop eating entire food groups, to the trainers in the gym who [promote] certain foods to enhance performance, to the proliferation of nutritionists, dieticians and naturopaths [who believe in curing problems through entirely natural methods such as sunlight and massage].

"And just look in the bookshops – all the diets that advise eating according to your blood type or metabolic rate. This is all grist for the mill to those looking for proof to confirm or encourage their anxieties around food."

monster 08-19-2009 10:45 AM

Your source is a Guardian Article? With a couple of quotes and a term coined 12 years ago. As far as I can see, it does not suggest that being on a gluten free diet or trying to eat healthily is a mental illness, just that there is a term for people who do obsess about eating healthily to the point where it causes harm.

Clodfobble 08-19-2009 10:47 AM

I'm pretty sure OC was rolling her virtual eyes at it, not actually agreeing with the article. :)

monster 08-19-2009 10:49 AM

oh, ok, sorry, it looked to me like she was mocking you. mybad. still a very bizarre interpretation to take from that article.

OnyxCougar 08-19-2009 05:41 PM

I wouldn't mock Clod. I'm actually outraged that these fucks that are poisoning us are trying to say that those of us who want to make our own food choices FFS are mentally ill. Well fuck them. Assholes!!!

DanaC 08-19-2009 07:09 PM

That's clearly not what they're saying Onyx. Healthy eating is one thing; obsessing about restrictive diets to the point of self harm is something entirely different. And, I am confused as to how 'these fucks' are poisoning us ?

Aliantha 08-19-2009 07:33 PM

I can understand what Oc's point is somewhat. A lot of people who just make certain choices without even obsessing over them are viewed critically by some members of society.

I know a lot of people around me think my choice to eat organic food as much as possible, and to minimize additives and keep to a whole food diet as much as possible think I'm obsessive, but I don't think that's the case.

When it comes down to it, most of us have pretty crap diets and have far too many preservatives and additives in our food and it's becoming a big problem when you look at the increasing numbers of people dying from bowel cancers and other conditions brought on by a diet high in sugar, salt and preservatives, not to mention highly processed foods with no fibre what so ever hardly.

I don't think the article was actually criticizing people who make alternative food choices though.

Clodfobble 08-19-2009 07:44 PM

Quote:

Originally Posted by DanaC
Healthy eating is one thing; obsessing about restrictive diets to the point of self harm is something entirely different.

Sure, but the question is, is self-harm really so likely that it warrants a scare article? From a nutritional standpoint, it is much, much easier to become malnourished by avoiding all meat than by avoiding

Quote:

sugar, salt, caffeine, alcohol, wheat, gluten, yeast, soya, corn and dairy... pesticides, herbicides or... artificial additives
I personally know several people who avoid all of the above. (There are indications that soy and corn can pose similar problems to gluten and casein for some developmentally-delayed kids, and in some cases may actually have a much larger effect than the first two.) Most of them started the diet as a treatment for their kids, but they have ended up taking the whole family along for the ride, and everyone is healthier for it. Of course you can become malnourished following any diet, but this article seems to indicate that it's likely to happen when you restrict the above things, and that just isn't the case. Where is the medical classification for an unhealthy fixation on eating only crap food? Lots of people suffer from that.

Aliantha 08-19-2009 07:51 PM

I think it depends what perspective you read the article from. I didn't actually see it as a scare article so much as an 'oh, so there's a new lable for people who make themselves sick over food' type of article. Mind you, I know nothing about the publication, so I'm taking what's written there at face value.

I think there are people out there who do make themselves sick because they restrict their diet so much (without informing themselves properly) and I can definitely see how it can be socially isolating. No more dinner and drinks with friends, no going to your friends house for a BBQ etc.

DanaC 08-19-2009 07:55 PM

Actually the article says they start off by restricting those things, but that for the obsessive they keep refining that down and engaging in further restrictions. Even to the point of damaging relationships or becoming malnourished.

Obsessive behaviours around food can be damaging. It's not really about what diet someone's on, so much as it's about how they relate to food. I think there is something to be said for the idea that we live in a society that encourages obsessive relationships with food.

monster 08-19-2009 08:49 PM

In the UK this news period is called "Silly Season" because there's so little news to report. All this article is doing is recognising that some people have reached this extreme and noting who is likely to be susceptible.

There's a lovely family at our pool and the mother -lovely woman- could probably be diagnosed with this. her family tolerate her obsessively healthy habits, and eat regular food when not in her presence. But last year she wouldn't allow them to attend the pool social functions because she knows they'll eat hot dogs when she isn't looking, and people started avoiding her on deck if they had food because she'd walk over, read the label and tell them how awful it was. And she really isn't that sort of unpleasant person, but her healthy eating obsession took over for a while and affected the social interactions of her entire family. i haven't spoken to her much this year so don't know if it's still the same.

monster 08-20-2009 08:53 PM


Clodfobble 08-23-2009 08:45 AM

Gawd, the fun just never stops around here.

We had a follow-up with the nutritionist to discuss his staggering allergy results. She confirmed that yes, that number of very-strongly-rated intolerances is unusual, even for an autistic kid. She also had me go all the way back through his food/behavior logs with her to be sure: a lot of these are definitely new sensitivities within the last couple of months. He used to eat peanut granola bars all the freaking time without a problem, then they slowly started causing more and more of a reaction until now they are an instant ticket to diarrhea and poor behavior.

What this means is that his digestive tract is so damaged that going GFCF, while helpful, has not been enough to allow it to heal on its own. His stools got better when we forced him onto all new foods, but they gradually got worse again as these new foods leaked through his damaged intestines into his bloodstream, where the immune system said, "WTF, GTFO!" and started attacking it, thus developing a sensitivity to this new food. Every time we put food into his system, we run a significant risk of developing a sensitivity to it, and the only solution right now is a strict rotation diet, where he does not eat a food more often than once every 4 days.

So each day gets its own grain, protein, etc. I'm still hammering out the details around what he will and will not eat, but the bare bones look something like this:

Day 1 - Chickpea flour, Turkey - His current waffles and sandwich bread are chickpea flour, so this is pretty much his daily diet right here already. Waffles for breakfast, turkey sandwich for lunch... and probably a turkey sandwich for dinner until I can get better ideas.

Day 2 - Amaranth flour, Chicken - The pumpkin bars I alluded to in another thread were a test run with amaranth flour, to see if he could taste it (it's one of the yuckier flours, and he already rejected amaranth waffles long ago.) He couldn't. So that's a pumpkin bar for breakfast, chicken nuggets breaded with Lay's potato chips for lunch... and chicken nuggets for dinner until I can get better ideas.

Day 3 - Corn, Sunflower - Sunflower is the only nut that he doesn't have a severe problem with yet, but he's more likely to eat that than beef, so we'll start here for now. Corn is super easy, with tons of snacks like Fritos, Tings, tortilla chips, Kix cereal, Chex cereal, popcorn, etc. My next "bar" attempt is going to be a sunflower butter (like fake peanut butter) bar. We'll see how that works out...

Day 4 - Sorghum Flour, Pork - I made a new loaf of sandwich bread last night with sorghum flour, so we'll see if he is willing to have ham sandwiches on it. I could in theory blend it with tapioca flour to mitigate the taste, but tapioca flour is already in his chickpea flour bread. Maybe potato flour. Oh, but potatoes are in the breading of his chicken nuggets on day 2 (of course it's a theoretical breading I haven't tried yet, so maybe he won't like it anyway.) At least he can have bacon on these days. I'll just feed him bacon all day long.


But believe it or not, the above is actually the preferable solution. Given his ongoing problems, at this point we've earned ourselves a side trip to the gastroenterologist, and I've been reading up on the messageboards about the common procedures and treatments others have had to do. I have learned they will likely do a pill cam procedure, which will take pictures as it travels all the way through him and tell us exactly what parts are damaged and how. Small intestine damage is treated with different meds than large intestine, inflammation is treated with different meds than infection, Crohn's disease gets its own special protocol, etc. So that would be a relatively easy thing. The nightmare scenario is they tell me he is just too damaged to heal on his own, even with medications, and that he has to do a stint on the elemental diet; i.e., nothing but liquid fortified with amino acids and vitamins all pre-broken-down, the same sort of thing they give to coma patients through a feeding tube, so his digestive system has a chance to be totally left alone for awhile.

Make him eat nothing but liquids for some length of time? Well okay, I have the resolve to do that, if I have to. Hell, it'll be easier than trying to come up with real food he can eat. But try to send him to school while he's doing this? Let him spend every snack time and lunch period sitting in the nurse's office? I just don't know. Maybe he'll just take a few weeks off, unless they tell us we have to do this thing for months... But hey, maybe we'll get lucky and the rotation diet plus meds will be enough, right? Gotta think positive.

xoxoxoBruce 08-23-2009 10:14 AM

Someday, when you're babysitting your grandchildren, you'll have to write a book about your journey.

limey 08-23-2009 12:36 PM

Hugs, clod, just hugs ... :grouphug:

Pooka 08-23-2009 02:28 PM

I thought about you guys Friday when I stopped my my best Austin buddies house and was invited to try an amazint GFCF cake... she said it was a mix she bout at whole foods... Pamala's I belive was the lable.

Hang in there! You are an amazing mother and I know that you are unrelenting in your quest. Your children are blessed to have you and will one day be so grateful for all you go through to give them the best.

Clodfobble 08-23-2009 02:59 PM

Thanks - hey by the way, I tried making bacon in the oven this morning the way you suggested, and it came out perfect! I will never make bacon on the stovetop again. And, he ate the sorghum flour bread at lunch without a second glance. Hooray!

DanaC 08-23-2009 04:48 PM

Clod my heart breaks every time I read this thread. It's so fucking unfair. My mum spent years following this and that new restrictive diet for me. Changing the household's diet to match as much as was feasible. The worst was when i was diagnosed (wrongly as it happens) with Total Allergy Syndrome. I think they also call it Multiple Alergy Syndrome: which is what your lad's reactions sound like (apart from the autistic spectrum symptoms).Diets took over everything. And at the risk of repetition, it's just so fucking unfair. Robs parents of joy and ease in their little-uns.

If I had a faith I'd send up a prayer. I just really hope you find whatever combination of food/action/medication that will help your lad soon so you all can get on with the deeply important business of having unhindered fun.

Pie 08-23-2009 05:37 PM

Clod, will he eat fish? There's substantial evidence out there that omega3s have significant effects on autoimmune conditions... I will look for some links.

This article (Omega-3 fatty acids in inflammation and autoimmune diseases) discusses the effect of omega3s on multiple inflammatory-upregulated disorders, many of them involving the gut.

Another one (Dietary modification of inflammation with lipids).

Yet another (Omega-3 fatty acids in inflammation and autoimmune diseases)

I can help you get a hold of any of these articles (or any others you might want).

Omega3s are also available in high-quality supplement form if he doesn't like fish. I personally take 1g of EPA/DHA every day for diabetes-related systemic inflammation... My mom takes 2g/day for Crohn's disease, and my husband takes 2g/day to help with his psoriasis -- we don't want that to evolve into rhumatic arthritis! Check out LEF's ingredient list for any of his banned substances... They're one of the few suppliers I know that are this thorough.

Kudos to you, lady.

monster 08-23-2009 07:07 PM

Quote:

Originally Posted by DanaC (Post 589598)
The worst was when i was diagnosed (wrongly as it happens) with Total Allergy Syndrome. I think they also call it Multiple Alergy Syndrome.

been there, done that. I had drops to put under my tongue, but because i showed allergy to those, drops to take before those :lol: Did you ever do the "just lettuce" elimination diet? *shudders*

Clod, whatever happens with this, I am thankful that you're his mom. He's getting the best chance he can.

Clodfobble 08-23-2009 10:24 PM

Pie - he's not supposed to eat any fish because there's just too high a risk for mercury contamination at any level. But he does take an EPA/DHA supplement--or rather, he's supposed to, it's the next one in line for him to be ramped up on. We're a couple of days on the new zinc supplement now with no bad reactions (to the contrary, his cognition was way, way up today, it was awesome,) so the fish oil capsules are next. Problem is they taste like ass, so we're still working on how best to get him to ingest them without having him spit nasty fish oil all over his clothes (because believe me, that smell does not wash out. I had to throw away a set of my daughter's pajamas after she accidentally drooled some all over herself. The kind she takes tastes okay, but that's because they mask the flavor with orange--which he's allergic to.) He's also on large doses of Vitamin C for immune support as well.

Pie 08-23-2009 10:34 PM

Neat! The ones I take have a rosemary flavor. The gelatin capsules gave me 'fish burps' for a few weeks, but that faded with time. I don't notice them at all now.

Pico and ME 08-24-2009 04:27 AM

They do have fish oil capsules now that are coated so that they dissolve in the small intestine instead of the stomach (at least I think that's how they work). I am taking them now and I got them from Sam's Club. They have no smell or taste and no burping.

Clodfobble 08-24-2009 09:52 AM

I should note he doesn't actually swallow the capsules--if we could teach him to swallow pills it would be a miracle indeed. (I'm actually saving empty capsules from some of the ones I open so he can start practicing with them someday.) I prick the fish oil capsules with a pin and squirt the oil into a little medicine bottle with a dropper. I can only do about three-days'-worth at a time though, and I have to store it in the refrigerator, because it can spoil once it's out of the capsule.


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