Our experience on the GAPS diet Tuesday, Aug 14 2012 

Prompted by a comment to a previous post, I’ve dropped in to detail our experience on the GAPS diet. Briefly, the aim of the Gut And Psychology Syndrome (GAPS) diet is to heal–really heal–the gut, which can be the cause of so many issues. The diet works in stages, with the introduction stage being quite restrictive; you add in more and more foods with each stage until you reach the “full GAPS” diet, which you maintain for a while (think 2 years). Eventually, you introduce dairy (also in stages), but the GAPS diet does remain gluten- and soy free. The staples of the diet are organic/unprocessed meats and broth, lots of fats, soup, cooked vegetables, eggs, naturally probiotic foods (like sauerkraut), and NO grains, starches, or sugar. After the couple of years on full GAPS, the gut should be healed and you can start coming off of the diet and eating other foods (while still eating healthy and making good choices). Basically, it is not a life sentence and has as its primary goal healing of the gut/digestive system so that all foods can again be tolerated.

Making the decision

I made the decision in January 2012 to do the diet with our three children. Here’s what I was hoping, long term, the diet would do for us:

Me (31 years old, normal mom): reduce stress and fatigue, clear skin, bonus would be to lose 8-10 pounds

Nate (6.5 years old, former autism diagnosis): calm his “can’t-keep-hands-to-himself” tendency, heal food sensitivities (eventually we’ll be eating dairy on GAPS!), broaden his self-limited diet, improve his ability to interact with same-age peers

Lucy (4.5 years old, neurotypical): help with sensory issues

Levi (3 years old, neurotypical): broaden diet, heal any issues that were caused by the heavy doses of antibiotics he had when in the hospital as a baby

Initial observations

About two weeks into the diet, here were my observations:

Me: this diet is easiest for me, since I’m the one who made the choice to do it. I’ve also found I’m an “all-or-nothing person” when it comes to eating: if I’ve chosen to eat very well, then I won’t eat one bite of a banned food. On the other hand, if I’m being lax about my eating, I can eat an entire pan of brownies in one day. I’ve found many of the GAPS foods/recipes delicious, with some fails too (some of the soups). I also don’t mind the taste of broth and drink it fine with each meal (a cornerstone of the diet). For the first few days, I had some definite cravings (coffee, sweets) and felt hungry all day, even though I was eating plenty. The cravings and excessive hunger subsided after about 6 days or a week, though. Honestly, I haven’t been desperately craving coffee like I thought I would be. I’ve lost 7 pounds. I’m still as stressed as ever–actually, maybe more!–which is partially due to the huge increase in time spent in the kitchen these first couple weeks of the diet. That will get better as we move through the stages and add more foods that can be prepared in shorter times. My skin hasn’t changed, but I’m still hopeful.

Nate: unbelievably, Nate is doing pretty well with GAPS! The first two to three days were the worst with him wanting his usual foods (ketchup, gf pancakes, peanut butter) and hating the broth. Then I made boiled (yes, boiled) hamburger patties into which I had kneaded minced carrot, onion, and salt. He loved these, and from then on has been chowing down like crazy: decent portions of broth with each meal, scrambled eggs (introduced on stage 3 of GAPS, which I moved us all to after 5 or 6 days since I was pretty sure no one was sensitive to them), lots of steak, ground beef, and modest portions of cooked vegetables. I’m still sneaking most of his vegetables into other foods. Did you know that you can blend a yellow squash with eggs and make delicious scrambled eggs? Nate has been salting everything quite a bit, but I’m not too worried about that since I bought a high-quality/nutrient-rich salt. As far as behavioral effects, I have noticed a calmer Nate this week; some of that could be from getting over being sick too, though. Another instance that sticks out is when Nate and Levi came to visit Lucy in the hospital: Lucy showed Nate several of the presents she had gotten for being in the hospital (a sparkly Barbie, a coloring book, and more). Normally, Nate would have gotten angry at her having gotten presents but him not; however, he said, “Cool Lucy!” I couldn’t believe it. I know that’s something tiny, but I noticed it.

Lucy: surprisingly, Lucy has been complaining. A lot. She was supposed to be the easy one with GAPS, since she is a great eater. I’m chalking up her complaining to a prolonged recovery from the stomach sickness. She has refused the broth each meal, even though the day before she got sick, she drank cups of it (hmm–maybe her body is associating the taste with the sickness). This morning she did love the breakfast sausage (ground beef mixed with minced garlic, ginger, parsley, cilantro, basil, and salt) and scrambled eggs, though.

Levi: Levi is kind of in between Lucy and Nate as far as success with the diet goes. He has been complaining about the broth and some of the foods, but he has also started eating foods he wouldn’t eat before (cooked broccoli, scrambled eggs). He has been very fussy and whiny, but I think that’s part sickness recovery and part diet.

All three children have been very lethargic. I attribute it–again–partly to sickness recovery but also partly to their bodies adjusting to this new way of burning energy (burning good fats instead of carbohydrates). It could also be “die-off” of the bad bacteria in their digestive systems. I’m hoping it resolves within the next week, but it could be longer.

Observations after one month

Here’s what I wrote after a month:

We’re over a month into the GAPS diet, and I’m pleased overall with how things are going. The children finally got their energy back after about three or four weeks and no longer lounge on the couch all day–thank goodness. They are still eating a CRAZY amount of food. We’re going through two dozen eggs a day!

We’ve moved to stage 6 of the intro diet, which means we can have fruits as snacks (introduced one at a time) in addition to all the other things we’ve been able to have. I also got a nice juicer I’d been saving up for, so we’ve had fun the last couple of days coming up with fun combinations to try (carrot, cucumber, radish, apple, kale, celery, blueberry). Nate isn’t a fan of the juice (go figure), but Lucy and I are loving it. I’ve also reintroduced probiotics (stopped them when first beginning the diet) and cod liver oil.

Here are some of the dinners the kids have loved this week:
- lettuce wrap tacos (use lettuce instead of tortillas, then add browned ground beef w/garlic, tomatoes, and avocado. The boys eat all the items separately.)
- egg scramble with leftover taco meat, green onions, tomatoes, avocado
- steak stir-fry with onions and mushrooms, served with butternut squash fries

Individual progress notes:
Me – I’ve kept off most of the initial two-week weight loss, which is nice. Unfortunately, the diet has not helped my skin at all. I’m really disappointed about that. Otherwise, I’m feeling good, not starving, and mostly enjoying the foods.

Nate – I have noticed some really great things in Nate. First, he is eating a lot of foods that he either would never try or didn’t used to like. Yesterday he ate a big leaf of romaine lettuce with lunch. This morning he had two slices of cucumber with his huge plate of scrambled eggs, hamburger patty (with cauliflower, onion, and carrot mixed in), and guacamole (mashed avocado). Second, Nate has had a huge decrease in hyper behavior. It is wonderful. Before the diet, he had a really hard time keeping his hands to himself, especially when we were getting in or out of the car (he was always pestering Levi). This behavior has now decreased 99%. This improvement alone almost makes the diet worth it!

Lucy – To be honest, I haven’t seen much improvement in Lucy. She is a tough one. I’m still hopeful that her sensory issues and OCD tendencies could calm down.

Levi – Levi has been whiny whiny whiny. Some days I feel like I might scream from all the whining! I think some of his behavior has actually been die-off; perhaps he had more “tummy issues” to resolve than I had thought. He is generally eating the foods well.

Another really nice improvement I’ve noticed in daily life: it is no longer horrible taking all three children to the store. Checking out at the grocery store used to be the worst: children going in different directions, fighting with each other, taking things off the shelves, pushing to “help” load the conveyor, etc. No matter how much preparation I’d give or how many consequences I’d impose afterward, the store was always a nightmare. Now, with the decrease in hyperactivity, they are much calmer. They are able to stand still much better in the checkout line. I know this doesn’t sound like much, but it has really made life much more pleasant.

Starting to have some doubts

After about two months on the diet, I started feeling very “out of it” and foggy: someone would ask me a question, and my mind was blank. I would think of the answer 5 minutes later or something. I just didn’t feel like myself. I mentioned this to our naturopath (the one who initially recommended GAPS), and he said my brain fog was from lack of carbohydrates! What?! So I bought some quinoa and millet pronto after that appointment. Adding nutritious grains back into my diet definitely helped with the brain fog–and was the first step I took in moving away from GAPS a bit.

I talked with our naturopath about the severity of the diet, especially the complete removal of grains. He agreed it isn’t a long-term solution, and we decided I would slowly introduce healthy grains (quinoa, millet, and amarynth) with the children after they’d been on full GAPS for over a month (and intro+GAPS for over two months). This definitely isn’t following GAPS protocol, but I felt like doing two+ months of “hardcore” GAPS was better than nothing, and introducing those few grains while still doing the other GAPS stuff (broth, cod liver oil, probiotics, fat-full meats and oils, eggs, fermented foods) was still very healthy–and would hopefully still achieve the results we’re after (though maybe more slowly).

The final decision to move away from strict GAPS

In late April, after having been on the diet for close to three months, Lucy ended up in the hospital with severe dehydration after what seemed like a one-day stomach virus. No one else in the family got sick, though, and I had my suspicions that her condition was GAPS related–perhaps not caused by the diet but there was a possibility that the GAPS diet made her symptoms more likely to occur.

I decided to back off 100% adherence to GAPS and reevaluate what’s good about it and what I want to move away from.

The good:

  • Going on GAPS has greatly broadened Nate’s diet and improved his eating habits.
  • Whole foods meals–almost nothing processed
  • No sugar–and no ketchup addiction for Nate! Eliminating sugar alone definitely helped with hyper behaviors.
  • Helps me stay away from the “easy fix” meals like peanut butter and jelly on gluten-free bread EVERY day for lunch for Nate
The bad:
  • Completely eliminating all grains, including super healthy ones like quinoa
  • No wiggle room for occasional off-diet treats
My updated philosophy has been to stick with the good stuff from the diet–whole foods meals, no sugar, no easy fix meals every day–but back away from the extremes. I’ve added quinoa into the daily rotation (the boys don’t care for it, so I’ve been mixing soaked/cooked quinoa into other things like the breakfast sausage I make). I am not making every single dish for every single meal from scratch (today the kids had Trader Joe’s packaged roasted seaweed as part of lunch). On Sundays after church, we get In-n-Out meat patties for the kids and one order of fries so they can each have a handful. Fruit is still a between-meals snack, separate from other foods, since it is digested differently. I’m not making Nate drink broth with every meal anymore. I feel like adhering to the GAPS diet with total dedication for three months was a good thing, and now it’s time to back away, holding on to the great things we’ve taken from it.

New diet findings Thursday, Jan 5 2012 

I never thought I would say this, but I’m learning that the GFCFSF diet might not be for us. The reason? It actually might not be enough! Getting rid of gluten, casein, and soy might have just been scratching the surface of the problem this whole time. While those proteins are certainly problematic for Nate, what I’ve been reading and learning lately are showing me that there are many other environmental factors and foods that are most likely aggravating Nate’s gut and therefore his immune system and his brain.

I’m just beginning this new journey but am excited about even more improvements and changes on the horizon if/when we do implement these changes. Here’s the book I’m reading: Gut and Psychology Syndrome.

Vaccine video Sunday, Oct 30 2011 

People often ask me, “So, do you think vaccines caused Nate’s autism?” But the answer to that question is tricky. While Nate didn’t have an immediate, strong reaction to any particular vaccine, I do think they played a part in the very large picture of what caused Nate to be on the spectrum. In addition to vaccines, though, I think there are/were other environmental factors (just one being my having taken antibiotics before and during pregnancy) that, paired with his genetic predisposition, must have caused his autism.

I believe strongly that parents should be able to make the decision about whether to vaccinate their child—with true, informed consent. After watching only about half of this video, I had to come on here and give the link!—it’s that good: http://vimeo.com/31036452

2011 Update Friday, Sep 16 2011 

Nate is now a 6-year-old, thriving boy. As he approached his 5th birthday, we had our last IEP with the school district, where they had great things to say about him and recommended full mainstreaming for kindergarten. We said goodbye to special education, and we haven’t looked back! Nate went to kinder at a small private school with no aids or services and loved it!

We are still going strong on the GFCFSF diet and have put Nate’s brother and sister on the diet, too. (In fact, Levi, who is almost 3, has been on the diet since he began eating solid foods!) We see such positive results from this change alone. We do still follow many of the other treatments we started several years ago: probiotics (right now we use HMF Powder by Genestra), fish oil, folinic acid, zinc, l-taurine, DMG, and we just phased out mb12 shots.

Nate is super smart and sweet, is a good singer, is great at memorizing, loves to read. He is well ahead of his peers academically.

His struggles include a strong desire to always be first (and not let others go first) and overreaction to consequences (for example: if I tell him he must stay in his room for a time out for a certain amount of time, he almost can’t handle the confinement and will just fall apart. Or if I say he needs to stop talking and say no more words–perhaps if he was fighting or yelling in the car–he flips out as if not being able to say the next word is going to kill him). And, while he adores babies and also loves being with older kids, he sometimes has trouble with kids his own age. He always wants to be in charge, and so he often butts heads with other kids who have strong personalities too.

I am so thankful for our son. I will keep updating this blog in the hope that it might help someone else! :)

Great info for parents suspecting autism Thursday, Jul 8 2010 

I was pointed to this blog post with some great information for parents on what to look for regarding “normal development” of babies.

Here’s a pertinent excerpt:

Baby B.L.I.S.S.*
For our purposes, I have developed an easy way to remember the signs to look for as your young child is developing. When making a diagnosis, my colleagues and I focus on a baby being able to do several early developmental skills around social interactions and play. I have also created some short video clips showing these skills as they begin to develop. The video shows what your baby should be doing by their first birthday for each part of the acronym: B.L.I.S.S.
B = Babbling- your baby should be playing with vocal sounds a lot, making a variety of vowel and first consonant sounds such as b, d, and m – think mama, dada, baba, etc.
L = Looking – this involves your baby looking at you when you talk, looking back at you when they are playing to “check in”, and looking at something you point to, to see what it is.
I= Imitating – your baby should imitate your basic play actions such as clapping hands, waving bye-bye, blowing kisses, or banging blocks together, etc.
S= Sharing – your baby should share enjoyment with you by laughing and giggling for familiar games such as peak-a-boo, or “Sooo big”.
S = Showing – your baby should hold objects up to you to “show” them to you. They often won’t let go of the item, but they want to get your interest in what is interesting them. If they are walking, they may “bring” it to you to show you.
So this is the new kind of baby B.L.I.S.S. I hope every parent becomes aware of and I want you to remember it for yourselves and for all of your friends. Remember, if your friends or family have concerns, by just starting with these questions, you will know almost immediately if you should have an autism specialist take a look. It is important to note, this is by no means a diagnosis, it is just a way to be aware of the early signs so that if this is what it is, the correct course of action can be taken and a diagnostic assessment can be done as soon and as early as possible.

In our experience (although it’s getting harder and harder to remember–it was 4 years ago now!), Nate really lacked in the “Babbling” and “Showing” areas. The other areas were also delayed, but not as severely.

Temple Grandin interview Tuesday, Feb 2 2010 

I read an interview with Temple Grandin, the noted author who has autism, here. To my knowledge, Grandin has not been an advocate for any of the “new” autism groups like TACA, groups that support biomedical treatments and research for a cure. That is why some of her answers pleasantly surprised me:

Cases of autism are rising. Why do you think that is?
Some of it is probably due to the way autism is diagnosed. I saw people on the HBO lot that probably have Asperger’s but never got a diagnosis as a child. There has been an increase in regressive autism, children who develop normally, have speech, and then lose it. I think there’s something going on with some type of environmental contaminant. Some insult is getting to the child whose genes are susceptible to autism. I think we are going to be hearing more about epigenetics and autism. With epigenetics you look at how the genome responds to the environment. How things like toxins and diet and other things turn on the switches that regulate how certain genes are expressed.

I’ve read this a few other places, and it resonates with me. Perhaps there is no one “cause” for autism, and something that contributes to causing autism for one child (e.g., vaccines) might not harm a neurotypical child at all, because that neurotypical child’s body isn’t susceptible or predisposed in the first place.

I was also pleased to read that Grandin mentioned toxins and diet. From our family’s experience, we know that diet makes a huge difference–not just for Nate, but for all of us!

“Autism pride” or neurodiversity is a growing movement. Do you think there needs to be a “cure” for autism?
I believe there’s a point where mild autistic traits are just normal human variation. Mild autism can give you a genius like Einstein. If you have severe autism, you could remain nonverbal. You don’t want people to be on the severe end of the spectrum. But if you got rid of all the autism genetics, you wouldn’t have science or art. All you would have is a bunch of social ‘yak yaks.’

I agree that not every minute autistic trait should be erased. Any “autism” still left in Nate is at the “quirky personality trait” level, and I wouldn’t change those traits. (I am instead trying to help Nate learn how best to deal with some of the quirks, like when he gets super upset if he doesn’t win a board game.) For children whose autism is more severe, I believe in embracing the child and working to help that child be able to function in society through language, understanding social cues, and improving what’s going on inside the body to heal what might be hurting.

2010 Update Tuesday, Jan 26 2010 

Nate is now 4-and-a-half years old, and as of his latest appointment with his DAN! doctor, in December 2009, we now consider him officially recovered! Even his skeptical-of-alternative-treatments neurologist admitted back in March that, if they were to redo the CARS test on him, “there is a high likelihood he would not place on the autism spectrum at all.”

Sometimes I take for granted how far Nate has come. Here’s a glimpse:

Then (2.5 years old, before the diet and most other interventions)

Now (4.5 years old)

Nonverbal, just a few signs (“more,” “all done,” “please”) Extremely verbal up to and beyond peer level. Neurologist, who says she can just “hear” autism when a child with autism speaks–something in the inflection, the stilted meter, the way the child speaks, proclaimed she can’t hear it in Nate. She used the words “best I’ve ever heard” about Nate’s language.
Meltdown or tantrum if made to stop a desired activity Much more go with the flow and “roll with the punches.” Still enjoys routine and being “in charge” and self-directing activities, but no rigid adherence. Can be reasoned with.
If he wanted something, he would just go and wait at the object instead of communicating (e.g., if he wanted something to drink, he would go stand by the refrigerator) When Nate wants something he can’t get himself, he comes and asks (e.g., “Hi Mama, may I please have some juice? I’ll get the cup.”)
Up several times crying at night; awake early (5:00 to 6:00) each morning Bed time at 8:00 p.m. with night waking very rare (perhaps once a week). Sleeps until at least 5:30 a.m. but stays in bed until 6:00 or later.
Desire to play with peers but no understanding of how to play with them (e.g., he liked to play chase, so he would go up to a peer, stare at him/her, then run away hoping he/she would chase him) Nate has no problem interacting with peers, and his way of playing is indistinguishable as “different.” While he doesn’t ask many questions about others or wonder about their feelings often, he is polite and loves to play.
Diet consisted of quesadillas, pizza, yogurt, cheese, chicken nuggets, fries, bananas, waffles, and baby food fruits—basically, LOTS of gluten, casein, and soy. Diet is not extremely varied, but it is free of all gluten, casein, and soy. A typical week for Nate includes pancakes for breakfast (GFCFSF mix made with extra nutritious goodies mixed in), banana, dry cereal, fruit leathers, hamburger patty, GFCFSF bread, peanut butter, bacon, blueberries, and small bites of whatever GFCFSF thing I make for dinner.

 

We are so thankful for Nate’s success. We believe the following interventions have been most successful, with God’s help.

  • The GFCFSF diet. Whenever we wondered whether this difficult-to-follow diet was really working, Nate would accidentally get gluten (or casein or soy) somehow, like accidentally being given food with an unknown ingredient or being given the wrong snack in class at church. And then we would pay the price in his behavior for a day or two: prolonged meltdowns over the slightest thing (a parent saying he can have juice in just a minute), uncharacteristic whining, crying.
  • Consistency between therapy and home. We started using the same language and prompts the therapists did with Nate, requiring he communicate to the best of his ability instead of just giving in to his tantrums or meltdowns.
  • mB12 shots. While these didn’t provide a huge jump in skills for Nate like they have for others, we did notice they help him accept changes in routine better. They make it easier for him to go with the flow, to order his world. (We noticed this when we did a challenge/re-challenge where we stopped the shots for several weeks, then reintroduced them and watched for changes.)
  • The guidance of our DAN! doctor, who helped put together the right combination of supplements and vitamins for Nate.

Nate will enter kindergarten in Fall 2010, and we anticipate he’ll be recommended for full inclusion in a general education setting. We are so proud and excited. :)

Telling Nate Monday, Oct 26 2009 

Recently, Nate came with me to run a couple of errands, and we stopped first at Starbucks. While I drank my coffee and Nate drank his apple juice, I asked, “You’ve heard how sometimes I say that you have autism?”

“Yes,” he replied.

I asked, “Do you know what that means?”

“Yes!” he said. “Well, no. I don’t.”

“It means there are extra special things about your brain,” I explained. “You know how you’re really good at some things? Like you can read? I don’t know any other 4 year olds who can read like you can. And what else are you really good at?”

“Playing games!” he chimed in. “And playing cards!”

“Yes!” I agreed. “And you can remember things really well–you have a great memory. And you are so smart.”

“Yes, I am,” he beamed.

“Those are some of the extra special things about your brain. And of course, there are things that are harder for you, too. Like you know how you have a hard time letting others go first?”

“Oh yeah,” he dismissed, already thinking of changing the subject.

“Well, that’s what autism means for you. You just have extra special things about your brain. Cool, huh?”

“Yeah! Cool!” he replied.

And then we were on to a new subject, and that was that.

Gluten-free getting easier Friday, Jun 26 2009 

Some cool news: Kix, Rice Chex (and some other General Mills cereals including Corn Chex) have been reformulated and are now GFCFSF! The old Kix had gluten (whole grain oats), but they don’t anymore. Jon called the manufacturer and also confirmed the cereals are made in a dedicated facility, which means nothing else with gluten is made there. This means more things are available for GFCFSF dieters at the regular grocery store, and they cost less than the specialty cereals we usually have to buy.

2009 Update Friday, Mar 13 2009 

Nate is such an amazing little boy. He is now more verbal than many of his neurotypical peers. He has been able to read for several months now (self taught). He loves other kids and enthusiastically greets everyone by name (he has an amazing memory, especially with names). He courageously endures all of his treatments, including yucky tasting daily supplements, b12 shots every 3 days, and a restrictive GFCFSF diet. He is so joyful, energetic, smart, and sweet. He has a new little brother, Levi, who is 4 months old now; Nate has been nothing but sweet to him since day one.

We had an appointment with Dr. Mumper at Rimland Center last month. We went through Nate’s current supplement routine, adding a few new elements (magnesium each day to help with his auditory sensitivity/defensiveness; we reinstated cod liver oil to decrease visual stimming/using peripheral vision; we also reinstated probiotics, especially for if/when he goes on antibiotics; glutathione lotion, which has myriad benefits; and a 10-day course of two strong antibiotics to nip some possible clostridia in the bud). Dr. Mumper also recommended we take Nate back to the neurologist who originally diagnosed him two years ago, because she believed Nate would no longer qualify for the diagnosis! I have made an appointment with the neurologist for the end of this month; from what I know of her, she would be very reluctant to remove a diagnosis from a child, but Nate would still score much lower on the CARS test he originally took.  (His score in March 2007 was 43.5, which placed him in the “moderately autistic range.”)

When Dr. Mumper asked us what one treatment we believe has helped Nate the most, Jon and I agreed it is the GFCFSF diet.

Nate’s next IEP is in April. I’m very interested to hear the things his teachers will say about him, since they will have had a year with him. We are optimistic about Nate being mainstreamed by kindergarten (which will be September 2010), as I can already see Nate starting to bring home more negative than positive behaviors from his peers at school. We love this amazing boy!

P.S. After reading some of my older posts, I realized I should also update that Nate is now a good sleeper. He goes to bed at 8:00 (usually plays in his room, but then turns out his light and is in bed by 9:00) and almost always sleeps until 6:00 or a bit later. Waking/needing one of us at night is rare for him now–and it has been for probably 5 or 6 months.

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