Doctor’s Orders

I had an appointment with my doctor this week, just a checkup – no biggie. I told him how I have been so tired and how I’ve been gaining weight (18 pounds now. yikes.) He knows our whole background, including our stint on the GAPS/Paleo diet. Just two weeks ago, he recommended that Radio Dad go back to that style of eating. After hearing my symptoms, he told me the same thing. That’s right, my doctor told me that we need to eat Paleo! Can I get a prescription for that? Do you think my insurance will cover it? I’m totally kidding. ūüėČ

Have I mentioned how much I love our doctor?!

He also told me to supplement with B vitamins. According to him, everyone going gluten free should supplement with B, especially B-12. He may have told us that years back but I completely forgot. I’m going to research ways to get extra B through food, because food is generally the ideal way to get the nutrients you need. But in the meantime, I will probably add a B-complex supplement.

A doctor’s recommendation still doesn’t solve the problem of our food budget. We can’t go back to full Paleo for all 7 of us. Some say that “Paleo is more expensive” is a myth, that it really doesn’t cost much more. That’s baloney. I guess if you are going from the Standard American Diet (SAD) of processed food and many meals out to eat, to the Paleo diet of meat, veggies, and fruits prepared at home, then the Paleo diet and the SAD might be about the same. But we don’t eat like that. We didn’t eat like that even before GAPS. We eat mostly homemade foods. There have always been some convenience foods, but it hasn’t been the majority of our diet for a very long time. For us, Paleo is quite a bit more expensive. There has to be a compromise.

We’re working it out as we go, but the plan looks something like this: Radio Dad and myself will return to Paleo as much as possible. The children will eat more normally, with grains, sugars, dairy, etc. Curly Girl will remain gluten-free and dairy-free (for the most part) with excess sugar discouraged but I’m not going to be the food police either. Any grains prepared at home will be gluten-free and soaked or soured. I will continue to use healthy sweeteners at home: honey, maple syrup, coconut sugar, and fruit. Healthy oils will be the only ones we buy. No canola, soy, or corn oil! I will still make potatoes, though I will likely substitute sweet potatoes or cauliflower for us doing Paleo. I’m going to have to double-cook some meals. I hate to do it, but we can’t keep eating what we are eating now. This family needs parents that are healthy and have energy to care for everyone!

I’m also seriously considering the 21-Day Sugar Detox. I’ve had my eye on it for awhile but haven’t taken the plunge. Would anyone like to do it with me?
The 21-Day Sugar Detox

Introducing… Curly Girl! (Part 3)

Curly Girl, age 9

Sorry to leave you all hanging after Part 2! Life caught up with me, and you know how that goes. Where was I?

Ah yes… In our last episode, we tried replacing GFCF with the Specific Carbohydrate Diet but found it too restrictive despite the gains Curly Girl was making. We returned to GFCF and that was that.

There’s not a lot to tell in the following few years. Curly Girl continued to grow and mature, making improvements along the way. She was in a regular classroom at school, and for the most part, keeping up with her peers. She still lagged socially, but even that got better. But there was one thing… She kept getting sick.

When she was 5, 6, 7 years old, it was ear infections, one after another. Those seemed to clear up but then the UTI’s started. At the age of 8, Curly Girl started to get urinary tract infections. Every few months we are back at the doctor for more antibiotics. Every test comes back normal. There is really no good explanation. I hate to think what the antibiotics are doing to her gut. And yet, we don’t have any real options. The infections need to be treated. But, I digress.

When Curly Girl was 9, we discovered a liquid vitamin supplement made from seaweed and aloe vera. Radio Dad & I started taking it and had great results! We started giving it to Curly Girl. Within a month she was a whole different person. She interacted with us in a way that she never had before. She played with her siblings and it was almost like a normal family. It was wonderful! We’ve kept her on it since then, falling off the wagon for awhile when we moved and when the baby was born, but trying to get her back on it as much as we could. She definitely functions better when she takes it. But it hasn’t been the miracle cure we were hoping for.

Things have been rough lately. We’re blaming it on puberty & hormone changes, but I think there are a number of contributing factors. She’s been on a lot of antibiotics. Let’s face it. Every time we have to give her another round, we are causing even more damage to her gut. We’ve also had a lot of changes in our family,¬†first¬†moving¬†then having a¬†new baby, and those cause stress for her. She’s also increasing in awareness and with that awareness comes frustration. She can’t do the same thing as everyone else. She can’t even eat the same things. That would frustrate anyone.

So what role does diet play in all this? Where do we go from here?

We certainly can’t stay where we are. GFCF is only a band-aid to cover up the problem. It doesn’t heal anything. By removing gluten and casein you address part of the problem, and you can improve behaviors somewhat by avoiding them. But the real problem is the leaky gut, the damaged gut wall, the overgrowth of bad bacteria, the lack of good bacteria. As long as you continue to feed the baddies with starchy gluten-free food, you will never heal. Compound that with a constant barrage of antibiotics making things worse with each round and well… GFCF will never be enough.

We must do more. We must do better. Enter the GAPS protocol.

I’ll be back (soon!) to talk about how I discovered GAPS and why I feel like it’s the right thing at the right time. Stay tuned!

Introducing… Curly Girl! (Part 2)

Curly Girl, age 4 1/2

In our last episode, Curly Girl was diagnosed with autism and we placed her on the gluten-free, casein-free diet (GFCF).   After our confirmation that the diet was working (the couch incident) we began to see small improvements.  Therapists from Birth to 3 began working with her at this time also.  At the age of 33 months, Curly Girl made her very first stack of blocks.  Shortly after her third birthday, she started speaking.  (I cannot for the life of me remember her first word.  I really should write this stuff down.)  She started attending Early Childhood classes at the local public school, and we made slow progress.

At this point, I feel like I should mention some of the mistakes we made in the early days of GFCF.¬† I knew that wheat & dairy were off limits, but I figured anything else was fine.¬† Curly Girl ate a whole lot of potato chips, popcorn, jello, marshmallows and equally junky food.¬† But it didn’t have wheat or dairy!¬† It also had zero nutrition.¬† And all that sugar and starch just fed the yeast & pathogens in her gut, making her leaky gut even worse.¬† Couple that with a continued string of antibiotics for various illnesses… I shudder to think of what we did to her poor gut.¬† Still, GFCF was enough to keep her moving forward.

Curly Girl did continue to make progress.  Her speech improved, her behaviors improved, she began to draw & write.  She taught herself to read one summer by watching phonics videos!  She began to allow us into her world just a little.  But there were still some things missing. 

When she was around 5 years old, our family doctor (who is also a DAN! doc) suggested we try the Specific Carbohydrate Diet.¬† He said we didn’t have to, but it was an option that some families were having success with.¬† Well, if GFCF was hard to implement, SCD¬†looked¬†nearly impossible.¬† No sugar?¬† No potatoes?¬† No corn?¬† No rice?¬† Again I found myself asking, what will my child eat??¬† Still, I wanted to do the most I could for my daughter.¬† So we decided to try it.

Again, we saw tremendous improvement!¬† Curly Girl made enormous leaps and bounds during the time on SCD.¬† Her speech, eye contact, and ability to attend to a task all improved.¬† She also had improvement in bowel movements.¬† (Sorry it’s gross, but BM’s are a big indicator of gut health!)¬† On GFCF she frequently had unformed, almost diarrhea type stool, and on SCD they became nicely formed and regular.¬† It looked like SCD was working.

But we still had a problem.¬† Between the limitations of the diet and Curly Girl’s self-limiting, she was down to just a handful of foods she could/would eat, and a couple of those were “compromise” foods.¬† Eggs, bacon, applesauce, orange & grape juice, and hot dogs (definitely a compromise food!)¬† As she became more aware of others around her, she also became aware of all the food she couldn’t have.¬† She started asking for other foods.¬† At the time, I didn’t have the knowledge, the creativity or the energy to figure out how to create those foods and make them fit within her diet.¬† She also started to lose weight.¬† She was a skinny thing to begin with, so that was a big deal.

We had been on SCD for about a year.¬† I knew her gut had healed somewhat.¬† We decided to try a “regular” diet for a while and see how it went.¬† Not GFCF, but regular food like the rest of us ate.¬† That was a bad idea.¬† I don’t know what I was thinking.¬† I wanted her to be normal, and I wasn’t being realistic.¬† She did okay for a couple of weeks and then things got ugly.¬† It was obvious that we needed to go back to a special diet.¬† Instead of returning to SCD, we went with GFCF again.¬† It was less restrictive, more familiar, and GFCF food had become more accesible in our area.

Again, I need to point out some mistakes I made when implementing SCD.¬† For one, we never did the intro part of the diet.¬† I tried, but she wouldn’t eat the intro foods.¬† So I just let her eat anything on the allowed list.¬† I also failed to introduce probiotics.¬† This is a biggie.¬† SCD works by starving the bad bacteria in the gut, but you have to introduce good bacteria to take its place!¬† I didn’t do that, and I really should have.¬† Lastly, I allowed too many compromises.¬† To really work, one needs “fanatical adherance” to the diet.¬† I wasn’t able to provide that.

So, there we were… I was tired of being the food police.¬† Curly Girl was happy to have french fries again.¬† And that is how we continued forward…

(Stay tuned for Part 3!)

Introducing… Curly Girl! (Part 1)

Curly Girl, age 3

In honor of World Autism Awareness Day, I’d like to take a few moments to introduce Curly Girl.¬† She’s the one who started us down this road, so she gets to be first. ūüôā

When I was a little girl, I dreamed of someday having a boy & a girl.  The girl I was going to have would be frilly & girly, neat & pleasant, quiet & well-mannered.  She would have tea parties and play with baby dolls.  She would wear pink lacy dresses and twirl around and around.

When I grew up, I got married, had my boy, and then, in 2001, my baby girl was born.¬† I dressed her in pink lacy dresses and bought her baby dolls.¬† But that’s where the dream ended.

Curly Girl was born in the deep of winter.  She seemed to pick up every virus that floated by.  An eye infection at 2 weeks, RSV at 2 months, pneumonia and hospitalization at 4 months, followed by a constant string of ear infections and more pneumonia.  Her babyhood seemed filled with antibiotics, steroids, breathing treatments and doctor visits.  Still, she was happy and developing right on track.

As Curly Girl grew, she started getting a bit quirky.¬† She was fascinated with her hands, but wouldn’t use them to clap or feed herself.¬† But she would clap our hands together over and over.¬† She didn’t play with her brother.¬† She didn’t really play at all.¬† At¬†15 months, we weren’t too concerned.¬† Maybe she was just a little behind from being sick so much.¬† Then things turned.¬† She seemed to get worse instead of better.¬† She seemed to be in her own little world. By 18 months I was a little concerned.¬†

At age 2, Curly Girl still did not talk.¬† She no longer responded when we talked to her.¬† She didn’t seem to communicate with us at all except for crying.¬† Our doctor was concerned about her hearing.¬† We had a full work-up by an audiologist & ENT.¬† Her hearing was perfect.

By¬†age 2 1/2 we were all deeply concerned.¬† Her doctor finally asked the question that broke through to this world.¬† “Does she point at things?”¬† Simple enough question, but the answer was no.¬† At 30 months of age, Curly Girl did not use a distal point to communicate needs.¬† That was it.¬† The thing that tipped the scales from delayed to autism.¬† She was diagnosed with PDD-NOS (Pervasive Developmental Disability-Not Otherwise Specified), a form of autism.

Our family doctor, who diagnosed her, is also a DAN! doctor.  He is specially trained to treat autism using biomedical treatments.  He referred us to Early Intervention specialists in our county, and he also recommended that we try a special diet.  We got a crash course in leaky gut.  He said we should remove gluten & casein from her diet.

Gluten is a protein found in wheat, rye, barley, and a few other grains.¬† Casein is a milk protein and is found in¬†all dairy products.¬† At the time of Curly Girl’s diagnosis, her entire diet consisted of milk & wheat foods.¬† Crackers, macaroni & cheese, bread, yogurt and gallons upon gallons of milk.¬† Remove it all???¬† What would she eat?

But we were desperate parents.  We were willing to try anything.  And so we began down the road of dietary intervention.

At first, we didn’t think it was helping.¬† But we stayed on the diet.¬† After being GFCF for a few months, Curly Girl drank an entire glass of milk.¬† And she ran around the couch for 36 hours.¬† I’m not kidding.¬† Then she crashed and acted like she had a hangover for about 3 days.¬† Okay, I guess the diet is working after all!

Curly Girl has a “Leaky Gut”.¬† This is when the intestinal walls are damaged, causing them to become more permeable than they should be.¬† This damage allows the proteins gluten and casein to travel into the bloodstream undigested.¬† These two proteins are opioid proteins.¬† When they get into the bloodstream, they behave like opiate drugs.¬† Think morphine, opium.¬† You wouldn’t give a 2 year old morphine to get high, but when we gave Curly Girl milk & crackers, that’s what we were doing.¬†

There’s much more to Curly Girl’s story, but this post is getting very long.¬† I will continue her story next time, so stay tuned!