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DanaC 08-19-2009 06:55 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 07:49 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 07:53 PM

Clodfobble 08-23-2009 07:45 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 09:14 AM

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

limey 08-23-2009 11:36 AM

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

Pooka 08-23-2009 01:28 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 01:59 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 03:48 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 04:37 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 06:07 PM


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 09:24 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 09:34 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 03:27 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 08:52 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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