MTHFR.

It stands for methylenetetrahydrofolate reductase – or mother f*cker.

It’s the gene that sets the body’s detoxification process in motion by creating a long chain of enzymes, proteins and hormones the body needs to get rid of toxins. I’ve written before about how many toxins everyone ingests through city water, new clothes, mattress, plastic food containers, body wash, laundry detergent, carpet, cleaning fluids, etc. The toxic load on everyone is greater than it was 1,000 years ago, and it’s contributes to health issues of everyone – especially people diagnosed with autism.

MTHFR.

Studies have found that patients diagnosed with autism have a mutation in the MTHFR gene, meaning from the start, the detoxification process doesn’t get going like it should. My friend Joana – whose two boys were diagnosed with autism – had her whole family tested for this genetic mutation and found that she and her boys had a faulty MTHFR. And actually, studies have found, too, that “parents share similar metabolic deficits in methylation capacity” with their children with autism, according to a study in the Journal of Autism and Developmental Disorders from 2008.

Another study by Dan Rossignol and Frye in Psychiatry from 2012 found that about one in three children with autism have mitochondrial dysfunction, and that dysfunction is correlated to autism severity. My husband and I saw Dr. Rossignol talk at the TACA Real Help Now Midwest Conference last weekend, and it was incredible how much information supports the link between gut problems and autism. Possibly the most impressive statistic I heard at the conference was that 74 percent of children with autism show improvement after helping the body’s detoxification process (reported by the Autism Research Institute).

“It’s beginning to look like autism is a medical problem rather than psychological,” Rossignol said at the conference. Of course, this line of thinking isn’t really just “beginning”—Rossignol showed a headline from an 1889 medical lecture titled “Insanity* Proceed[s] from the Colon” given by a Chicago doctor and professor—but rather is beginning to more accepted.

Cooling down a pumpkin “pie” Jason made

 

So we had Logan tested for the MTHFR mutation with a test called 23AndMe. Logan had to spit into a big tube. He cried and shouted about it and refused to cooperate; in the end, we ended up siphoning saliva out of his mouth with a syringe. It wasn’t the most painful thing we’ve done, considering, but it definitely made me want to swear. MTHFR. Hopefully, it’ll tell us something to make it worth it.

If he tests positive for a faulty MTHFR gene, that means his body is not drawing out toxins like it should. Which further supports our thinking I wrote about here, that we suspect Logan’s rash was stemming from canned foods—not the food itself, but the nickel in the can and all the chemicals cans are sprayed with before being filled. With a nickel allergy common in Jason’s family, there’s a good chance Logan is allergic to it, too—and if his body is unable to detoxify, that allergen simply sat there, keeping him sick.

But in the meantime, while we wait for results, I’m happy to report that Logan has been having great days at daycare; he even earned his orange belt at karate! We are 51 days into our GAPS journey and started Stage 4 this weekend. As always, I wasn’t really sure if it was time to transition or not—we haven’t seen much physical change. But we stayed in Stage 3 for about four weeks, and the lack of variety was killing me (though Logan was taking it like a champ).

Waiting to test for his orange belt

Waiting to test for his orange belt

I’ve been seeing benefits from eliminating sugar and taking a probiotic, too. I now wake up every morning at 4 a.m., not groggy and icky but energetic and eager to spend an extra hour writing. My toes, which have been gross and itchy since I was in high school, have also started to get better.

“It’s really crazy how it all comes down to diet,” said Dr. Anju Usman at the TACA conference. “The #1 thing you can do for your child is clean up their diet.”

 

P.S. As I type this, an email pops up that Logan’s test results were inconclusive due to small sample size; we’ll need to get him to spit again and resubmit. MTHF*R.

Starting a Sea of Supplements

Drops of blood spurted out as I sliced my finger with the knife. Red drops dotted the bottom of the stainless steel sink and the bright orange carrot I’d been trying to cut in mid-air.

I sighed. How long is this going to take to clean up, I muttered. I tried wrapping my finger in a paper towel to stop the bleeding, but a puddle of red seeped through. I cursed; I was going to have to take the time to run upstairs, clean the cut and find a Band-Aid.

Logan’s favorite breakfast, pumpkin pancakes

It was already 5:35 a.m., and I still had to mix Logan’s pumpkin pancakes, cook them, and get the roast in the crock pot for supper that night. I still had to spoon his CocoYo yogurt into a thermos to bring as a snack. And, of course, I hadn’t packed a lunch for myself yet.

This was Monday morning. The rest of the week went much the same–without the finger slicing but with the addition of Logan and Sadie standing in the kitchen, wanting to play, from about 5:40 on. Both cases mean less time to put together lunch, breakfast, two snacks for Logan and a lunch for myself for the day.

But other than crazy mornings, we’ve been plugging along steadily with GAPS. We’ve gotten to add some delicious new foods, like fermented vegetables and pumpkin pancakes, which we told Logan are special Halloween pancakes. We’ve also started making our own coconut milk.

I barely stomach dry, boiled chicken anymore, but with boiled carrots and fermented red cabbage, it’s suddenly delicious.

The pancakes have lead to a little more wiggle room with breakfasts, though snacks are still pretty boring. We have two options: the CocoYo yogurt (that I’m not entirely sure is legal in this stage) and the Peppermint Gummies I wrote about last time.

Results are also back from Logan’s blood and urine analysis tests, and we met with his MAPS doctor to discuss any abnormalities. Little surprise, there are quite a few.

“His thiamine levels are low, and his B-vitamin levels are low, and he has a high need for glutathione.” The doctor dived right in. “His need for a few B-vitamins is a potential indication of some methylation needs.”

I’ve been reading about nutritional supplements, the methylation process and other biomedical treatments for autism for the past year — basically nonstop, in fact. I have piles of articles and studies I’ve printed out with highlights and summary notes, where I’ve translated the scientific jargon into my own words. I thought I understood it all fairly well. Yet, sitting in that insanely hot exam room, I felt like I was drowning in it all. Magnesium glycinate what? Orthomolecular intestinal huh?

11 supplements (some twice a day) ... is this too much of an overload?

11 supplements (some twice a day) … is this too much of an overload?

When it was all over, the doctor had given us recommendations to begin seven new supplements — on top of the four Logan already takes – and had ordered four additional tests. On my drive home, I couldn’t help but think about all the other articles I’d read, the ones on gullible parents spending a fortune on worthless “cures” for autism when of course everyone knows there isn’t one.

But isn’t there? I then think about Joanna, the woman I met from White Bear Lake, whose two sons are no longer on the spectrum due to dietary changes and supplements. And all the stories, like Quinn’s and Darren’s, from Talking About Curing Autism Now, that offer evidence some children do recover from autism from diet and therapy.

Even as I flip-flop between feeling gullible and progressive, Logan’s new pills now pile on our kitchen counter, and looking at them, I’m filled with either dread or hope, depending on my mood. We’ve separated them into a pill box to keep a week’s worth all organized. But still. Not only are they expensive – yet another recurring cost each month, this one about $200 – there’s just so many of them. I can’t fathom having to swallow that many pills every day for the rest of my life. Right now, Logan’s really excited about them – Jason’s been telling him the’re super pills. Will the novelty wear off once Logan realizes these are for the long haul?

At least the diet has an end date. We’re still lingering in Stage 3, but soon we’ll move into Stage 4. We simply have to. I admit I’m filled with dread more often than hope lately, and that part of me that wants to quit seems to grow bigger every day. This diet is hard. The supplements seem insurmountable. And my chest feels gripped by a tight fist that’s making it harder and harder to breath. Some days, I simply can’t tell if this a better alternative to junk food and meltdowns.

Feeling: Clueless

The one good thing from this week is we discovered Logan LOVES Halloween pancakes!

  • 6 eggs
  • 1 can of purred pumpkin
  • Dash of cinnamon

Blend ingredients (Jason uses a blender; I just use a fork). Grease skillet with coconut fat (we save the fat that solidifies when we make coconut milk to use). Drop small dollops of batter onto a hot skillet and cook — like regular pancakes, little air bubbles pop up in the center when they’re ready to be flipped.

Lessons Learned, Part II

I posted on Monday about lessons I’ve learned about following a year of autism and special diets, and after I hit “publish,” I realized I had forgotten two very important non-food lessons: Environmental toxins are especially bad for children with autism.  And they’re everywhere.

Research shows that a body with autism lacks the ability to detoxify as effectively as a neurotypical body.  There’s a long chain of reactions that happen in breaking down metals, plastics and chemicals and moving them out of the body, and I found this article by Dr. David Berger fascinating to read about it.  Basically, the body needs glutathione to detoxify, and Berger’s article cites research that demonstrates children with autism have lower levels of this compared to other children.

This, of course, would always be a problem for someone with autism.  But coupled with the other lesson I’ve learned, this is especially bad in today’s world because we put toxins in so many things.  For example, many hand soaps contain triclosan, a suspected carcinogenic.  Bed sheets are coated with formaldehyde, which leads to insomnia (among other problems).  Food is stored in plastic containers that leach chemicals.  Carpets, clothing, dishes, sunscreen–the list goes on and on.  In fact, the Chemical Abstracts Services website keeps track of every new chemical that is created, and currently there are more than 89 million listed.  Debra Lynn Dadd,  the author of Toxic Free, writes that in 2009, almost 500 billion pounds of chemicals were made in the United States.  “Yet there is no regulation that requires … health effects to be listed on the product label,” Dadd writes.

Since the Industrial Revolution, there has been an explosion of man-made chemicals.  Modern autopsies, Dadd writes, register roughly 212 chemicals that shouldn’t be there, including PCBs, styrene, dicholrobenzene, xylene and dioxins.  And compared to analysis of exhumed bodies of ancient Peruvians, lead levels in our bodies are 1,000 times greater today.  Any body will have a harder time detoxifying today thanks to the onslaught of chemicals around us.  For a body with autism, the load is all the more unbearable.

This, paired with our cultural dietary changes in the past century, makes it easy for me to see why autism rates have risen at such an alarming rate.  There’s more to detoxify, and there’s less nutritional help.

Chemical-free cleaning

  • 1 part apple cider vinegar
  • 1 part water

Instead of commercial cleaners, I try to use natural cleaners to try and reduce the toxic load on Logan and the rest of our family (this also follows suggests from TACA’s Autism Journey Blueprints).  I’ve also mentioned in this blog previously that I’ve changed all our dishware, and we will be putting in hardwood floors in at least our living room.  Ideally, I’d like to buy Logan an organic-fiber mattress and sheets, too.  I know they’re small changes, and I know my husband feels they’re mostly pointless.  Mainstream doctors are quick to point out there is no “real science” behind any of these theories or holistic approaches to autism.  But sometimes, small changes are all we can do.  And much of the time, big relief comes from the feeling that we are at least doing something.

Feeling: A little like a teardrop against a fire

Week 52: Hope That Ebbs and Flows

“Hope Always,” my favorite T-shirt proclaims with swirly yellow letters.  It’s a mantra of TACA and many parents with autism–and a couple weeks ago, there actually seemed to be good reason for hope.  The New York Times Magazine published a long article titled “The Kids Who Beat Autism,” which claimed about 1 in 10 kids diagnosed with autism will actually shed autism symptoms and be considered “recovered.”  Other websites and blogs have suggested this, of course–but coming from The New York Times, it really felt legitimate.  There is hope.  Always.

A surge of joy, of renewed hope, filled me–then suddenly left.  I had to put my favorite shirt to the side in my drawer as Logan’s tongue erupted with tiny white bumps all over its surface, and his left eye turned pink and puffy once again.  His notebook was coming home filled with comments like, “Logan hit a teacher with a bike helmet” and “Logan pushed another child into the wall.”  I swallowed tears every time I dressed in the morning and saw those happy yellow letters on my shirt.  I couldn’t wear it.  I feared I might be out of hope.  

What happened?  Hadn’t we progressed at all in a year?  We’d had ups and downs, of course, but overall, I thought we were pretty much going in the right direction.  But as we drew just one week shy of a year on special diets, practically overnight things seemed to jump back to virtually the same as they were last August.  Aggression at school.  Skin problems (well, technically tongue problems).  Refusals to eat vegetables and new foods.  Even his eye, which has been great since tear duct surgery last October, was looking irritated once again.  (And how in the world could that be connected to autism?)  

The bumps on Logan’s tongue I’m pretty sure are transient lingual papillitis, or lie bumps.  They’re apparently not serious but can be painful–which Logan confirmed by crying when drinking anything acidic and by continually sticking his fingers in his mouth–and are supposedly caused by reactions to certain foods or gastrointestinal stress.  My husband believes the Super Green Vitality fermented powder I’ve been adding to Logan’s morning routine is too much and is causing all these issues.  I’m sure he’s right–but is this stress good stress, caused by yeast die-off (which we want)?  Or is it stress because his system simply can’t handle this potent supplement?  And why didn’t it “kick in,” so to speak, until about three weeks after starting it?

Regardless, we decided to stop adding in the green mixture to his shake on Saturday.  By Sunday, his eye was back to normal, and the lie bumps had mostly receded.  

Deep breath out.  Now, perhaps the aggression will recede, too.  Maybe focus can move in.  Dare I hope?

At this point, I don’t know what to think.  My initial goal, last August, was to be dairy-free for three months.  That stretched to include going gluten-free, then sugar-free–then adding probiotics, vitamins, omega-3s, and apple cider vinegar–for at least a year.  Now that a year’s about up, I’m devastated that I can’t even draw a conclusion one way or the other.  I’m heartbroken, I’m irate–and I’m completely baffled.

But at least I’m hoping–or thinking about hoping–again.

Of course, then I remember that despite my valiant efforts to learn to cook and make new, tasty foods that Logan can eat, I don’t think he’s liked one recipe I’ve tackled.  He’s reluctantly eaten some, like the quinoa meatloaf, but mostly he freaks out even when confronted with my latest attempt.  Which is further disheartening because supposedly going gluten-free is often hailed as something that helps children with autism become more flexible with food.  I thought was going to be true of Logan, too, since he embraced his kefir and kale, but that brief bit of open-mindedness has either stalled out or regressed.  Just another thing for me to feel sour about this week.

Lemon pudding (from The Candida Free Cookbook)

  • 3 cups cauliflower, chopped 
  • 1 cup almond milk (I used quinoa milk)
  • Stevia
  • 2 teaspoons vanilla extract
  • Zest from 1 large lemon
  • 1/4 cup fresh lemon juice
  1. Add cauliflower, milk, stevia, vanilla and zest to a medium saucepan.  Bring to a boil on medium-high heat, uncovered.
  2. Once it’s boiling, reduce heat to a simmer and cook uncovered for 5 to 7 minutes, or until cauliflower is very soft.  Remove from heat.
  3. Place mixture in food processor or blender and add lemon juice.  Blend on high for 1 minute or until very smooth.
  4. Allow to cool uncovered at room temperature.  Cover and refrigerate at least 18 hours.

To be honest, I haven’t even tried it yet; it’s been cooling in my fridge now for about 24 hours.  I’m frankly too depressed to try and take a bite, much less plead with Logan to try something new (or Jason and Sadie, for that matter–they keep inching further and further from the diet).  The good news is I don’t think it’s my lack of cooking skills anymore.  Of course, the bad news that suggests makes me think I should give up hope.  Always.

Feeling: Pitiful

Week 48: Choking back frustrations

Even before we had kids, neither my husband nor I were great at keeping a clean kitchen.  When Jason responds, “Fine, I’ll clean the kitchen,” he usually means “…in a week or so.”  Having two kids and adding a special diet has definitely been a test of my Martha Stewart factor, one I admittedly fail probably more often than not.  But I try.  

In fact, I’ve been trying really hard lately, as I’ve decided to stop cleaning with chemical-based products like Lysol.  I’ve read plenty of articles suggesting people with autism have bodies that are unable to move metals and chemicals out of their systems, and after I started cleaning with natural products, I realized that “remove toxins” from the home is in fact one of the steps on TACA’s Autism Journey Blueprint.  So now when I clean, I use baking soda or apple cider vinegar–of course, the key words there are “when I clean.”

The dishes just keep piling up.

The dishes just keep piling up.

“When” is even more true now, as the straw that broke the camel’s back might just have fallen: Our dishwasher has finally gone kaput after about a year of half-working.  We’d tried fixing it (both Jason, his brother-in-law and a repair man), and tried switching detergents.  Everything would seem to fix the problem for a day or so, and then we’d be back to semi-sticky plates and saucers.  And after spending 45 minutes hand-washing dishes, I definitely have no energy left to clean anything else.  

Nothing seems fair, does it.  I suppose it parallels with Logan and our diet attempts for the past (almost) year.  It seems to be working, then reports like last week, that Logan’s been aggressive, hitting and saying things like, “I’ll choke you!”  

The only explanation I can come up with (other than maybe stacks and stacks of unwashed dishes on the counter pisses him off, too, but I don’t really think that’s the case) is fruit.  Once again, I’ve been trying to sneak fruit back into his diet.  Over the past two weeks I’ve allowed him a few slices of green apples and a few measly raspberries and blueberries.  I know fruit is supposed to be off the diet, but I can’t help thinking — can this tiny bit seriously hurt?

Apparently it can.  So he’s off fruit again — we’ll see how this week goes.

I’ll blame the dishwasher, but truthfully, I just wanted to be lazy last week and not cook–instead, I took my kids for a few hikes and to the beach.  So I don’t really have a new recipe that I tried, but I’ll elaborate on an old one I mentioned in Week 2.  I hadn’t made it in quite a while, since it’s not the healthiest meal ever, but at least it doesn’t have any sugar, gluten or casein.  I call it No-Sugar Mac:

My No-Sugar Mac

  • Add 1 package of shirataki noodles to boiling water and boil for a few minutes (I like the thicker, fettuccine-style ones).
  • Meanwhile, pour a small amount of chicken stock into a saucepan and add a handful of shredded Daiya cheddar-flavored vegan “cheese.”
  • Stir constantly to melt the “cheese” into a sauce.
  • Drain noodles and pour melted sauce over noodles.
  • Then I take a kitchen scissors and cut the long noodles down to bite size, since neither Logan nor Sadie is all that great with a fork.  Obviously, this would be optional for kids with more dexterity. 

As you can see, I’m still not really following directions (like I posted in Week 45).  But it works.

Feeling: A bit deflated

 

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