Dietary Intervention – The GAPs Diet

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I have wanted to write this post for a very long time. But every time I even thought about it, I developed terrible writer’s block. A new experience for me. Writing normally comes easily to me. Why such a blockage? Partly because this is a complex topic. It really warrants an entire book. No single blog post will do it justice. But primarily, honestly…fear. Fear of being judged, fear of reprisal, fear of offending people. But today, finally, I choose to go ahead in the face of my fear. Why? Because I believe in my heart that to fail to write about this topic would be a disservice to those who may find something worthwhile in here. (And then, in one of life’s great ironies, just as I had finally written the first few paragraphs of this post my computer crashed..I hadn’t saved the post, and there was no “recovered document” to be found…haha..the universe is testing my resolve!)

So here we go, let’s talk about diet. I know this is a highly controversial topic in the special needs community. I know there are children out there who are PEG fed, children who will “only eat white foods”, children who can’t tolerate certain textures due to sensory issues, children who gag and regurgitate, children who can’t chew at all. Getting any sort of nutrients into these children can be a battle. And parents of children with special needs are often so overwhelmed with other medical issues, therapies etc that the idea of making dietary changes can seem frightening if not impossible. I do not judge anyone for the choices they make in regards to their children. I believe all parents will ultimately do what they believe is in the best interests of their child. But dietary intervention was life altering for Sophie and our family, so I choose to share our story. I am not a dietitian, nor a doctor. I am not making recommendations on what is appropriate for anyone else’s child, or suggesting that worked for us will work for anyone else. I am merely sharing our story. You may find something in here that resonates with you. You may not.

I have written in earlier posts about what an unhappy baby Sophie was. Refluxy, colicky, crying in pain, waking repeatedly throughout the night. Her bowels were obviously not working well, as she was producing up to 15 stinky runny bowel movements per day. She had bouts of terrible nappy rash. She had loads of sensory issues. She was failing to thrive. She was beside herself, and so were we.

We suspected from early on that she was intolerant of dairy. Removing dairy from my diet while I was breastfeeding helped somewhat, for a little while. But the bowel issues and recurrent night wakings, with Sophie screaming out in pain, continued. I was going slowly insane with the stress and lack of sleep.

Then, when Sophie was about 12 months old, an old and dear friend of mine, Maree Symons (who happens to be a qualified naturopath), spoke to me about the GAPs (Gut and Psychology Syndrome) diet. I listened, but it all sounded a bit outlandish. And to be honest I was resistant to hearing what she had to say, as it seemed like a lot of hard work, and I was already at breaking point. She suggested I read the book. I ignored her advice for a few weeks, then ordered the book and read it. And I cried a river of tears. Why? Because it made sense. Because I knew in my heart that this could potentially really help my daughter. And because I felt it would be an impossible task. The diet sounded like a lot of hard work, and sleep deprivation and hard work are not a good combination. So for three long months I carried on, tucking the GAPs diet into a corner of my brain where it only occasionally came out to taunt me. But I couldn’t ignore that nagging voice forever.

Finally, when Sophie was 15 months old, I decided to bite the bullet and give this GAPs thing a go. What changed? A couple of things. Firstly, Maree told me that even though it might seem like life would be more complicated, the fact that I would need to plan ahead could actually make things easier on a day to day basis – being organized can sometimes decrease stress. That made sense to me. Secondly, our bio-medical doctor suggested that we make a six week commitment to GAPs in the first instance. He said that if I saw no changes at all during that time, perhaps GAPs wasn’t the answer. And if I did see changes, then that would be the impetus I needed to keep going. The GAPs diet is supposed to be adhered to for one to two years. At a time when getting through a single day was a challenge, making a one to two year commitment seemed outrageous. But six weeks – that I could deal with. And thirdly – I had decided that no matter how hard GAPs was, it couldn’t possibly be as hard as continuing on the path we were on. I couldn’t bear to keep having my child waking in pain throughout the night, couldn’t bear the thought of forever struggling to help her gain weight, couldn’t bear the thought of more nappy rashes, and continuing multiple nappy changes throughout the day. Something had to change. It was time.

So what exactly is the GAPs diet? Well I’m not the expert, and this isn’t the place to go into all the details. Some information can be found on http://www.gapsdiet.com/ . And all the details (including an explanation of the biochemistry behind the diet) are in the book (Gut & Psychology Syndrome, by Dr. Campbell-McBride). Essentially, a basic summary is that GAPs is a diet designed to help repair the gut by “healing and sealing” the gut wall and repopulating the gut with healthy gut flora. It is not a diet that you have to stick to for life. It is a diet that aims to fix the underlying digestion issues, rather than simply focusing on removing offending substances for a lifetime. The premise of the diet is that gut function and brain function are intricately linked. If your gut is not working properly, nutrients can’t be absorbed properly, and substances that shouldn’t be circulating in our systems can leak through the gut walls causing all sorts of health problems. It is a diet that is purported to help ameliorate many of the symptoms of autism, help resolve certain psychological disorders and some auto-immune conditions. It involves removing all starchy foods (including all grains, potato, sweet potato, corn and most beans/legumes), reducing fruit and other sugars, removing all additives, preservatives, colourings, flavourings, and eating organic, unprocessed ‘real’ food. GAPs also involves introducing foods such as meat and bone broths (to soothe and heal the gut lining), live fermented foods (to improve gut flora) and healthy oils (for calories and energy). The GAPs diet also incorporates fish oil and cod liver oil. Some people may need to take digestive enzymes or other supplements while on the diet. But primarily, GAPs is about eating real food, for real healing. GAPs also has protocols for children who would normally be completely breast or bottle fed. And GAPs can be done with children who are tube fed (by using a blenderised diet).

Well you can imagine how some people reacted when I suggested we were going to go down this path..What??? You aren’t going to give your child bread? Or rice? Or pasta? No carbs? How will she gain weight/ she is already underweight? Are you crazy? Isn’t that irresponsible? What has your GP said? Has your gastroenterologist approved? Well no, no-one in the western medical profession had given their approval. But we had exhausted all of their advice, and none of it helped. We were going to give this thing a shot.

My mother was one of many people who wasn’t very happy when I informed her of what we were going to do. But Sophie was staying at their house for one night each week, so they had to be on board if this was going to work. I was adamant that we were going to give this a go, and, somewhat reluctantly, my mother (to her credit) agreed to go along with it.

There was just one minor issue. I wasn’t intending to adhere to the diet in full. For those who have read previous posts you will see what a battle we had with breast and bottle feeding. We had finally managed to get Sophie to drink from a sippy cup, and she had finally started to drink rice milk. And I was terrified of giving that up. We tried her on almond milk and she flat out refused. She was intolerant of soy, and it wasn’t “GAPs legal” in any case. So I made a decision to keep her on rice milk (big mistake, as it turned out, but we all make mistakes). We also weren’t in a financial position to buy all organic produce, so I had to pick and choose what foods were the “least risky’ (in terms of pesticides etc), and which organic foods we would be able to afford. I figured that making some compromises while adhering to the rest of the protocol would be better than doing nothing at all.

So we launched into “almost GAPs”. The stove was on almost constantly, with a pot of bubbling stock on the top. I was tripping around all over town to source organic meats, sausages without starches or preservatives, cod liver oil, organic chicken frames. I will not lie. It was not easy. But then the miracles started to happen. Within less than 10 days Sophie’s bowel movements were substantially improved. Sophie was waking less. My mother noticed, and all of a sudden was much more supportive. She started (and continues to this day) to make stock, and cook up big bunches of veggies and other GAPs friendly food for Sophie. As time passed, Sophie’s sensory issues started to diminish. She was gaining weight. She looked healthier. Her overall development improved (probably as a result of improved sleep, and being in less pain). GAPs was working. After about four months, Sophie had completely normal bowel movements. And she was waking only two to three times a night. I figured that was the best we would ever get in terms of sleep. I thought that perhaps her sleep cycles were so disturbed after such a long period of poor sleep, that she would always be a night waker. I was wrong. When I finally had the courage to go ‘full GAPs”, and removed the rice milk, she started sleeping through the night. All night. Every night. Only four days after we stopped giving her the rice milk. For us, GAPs improved Sophie’s life (and ours!) beyond our wildest dreams.

We are not the “model GAPs family”. We followed full GAPs for only six months. It is supposed to be followed for one to two years. But Sophie was doing so well, that we decided to slowly introduce some non GAPs foods. Over the course of the next year we introduced quinoa, buckwheat, potato and sweet potato. Her system tolerated all of these foods. Eventually she was also able to tolerate rice again (perhaps two years after we removed it from her diet). She now occasionally eats corn. She still can’t tolerate dairy or soy, and we chose not to give her gluten. Perhaps if we had done GAPs for two years, her gut could tolerate dairy. Perhaps not. There is dairy intolerance on both sides of our family, and in reality humans are the only species that continue to eat/drink milk products after infancy. (GAPs actually does allow some dairy – but we did GAPs without dairy as Sophie was intolerant). Being dairy free is sometimes annoying, but something I am happy to live with.

Nowadays, Sophie still eats primarily GAPs type meals. With occasional starches and some other rare exceptions. For example we allow the odd artificial colouring or flavoring if at a child’s birthday party or other special occasion (though not any from the “dangerous food additives’ list http://www.traditionaloven.com/articles/wp-content/uploads/list_of_food_additives.pdf ). She is well nourished and eats just about anything we put in front of her.

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For us, changing Sophie’s diet was a resounding success. One of my biggest struggles and heartaches these days is seeing children who are suffering with bowel problems, reflux, colic, sleep problems or sensory issues, and wondering if their lives could be changed with dietary intervention. Hearing of children who could only eat three foods prior to GAPs, and now have a varied diet, and wondering if these children could be helped through GAPs.. Hearing of children who would only eat “white foods”, and who now eat all colours of the rainbow, and wishing that miracle for all parents who have children with ingrained food preferences. I find myself wanting to tell the world, but often keep quiet for fear of giving ‘unwanted advice’ or upsetting parents who are already over- stressed. And who is to say whether GAPs would work for them anyway? But I know it worked for us.

Please note that many children (and adults) take much longer to derive significant benefits from GAPs. We were lucky that Sophie responded so quickly. So if you decide to go down this path, and aren’t getting immediate results, please don’t be disheartened. There are plenty of support groups out there including GAPS Kids and GAPS Pantry on Facebook. There are many different stories, but almost every story is a success story, in that improvements are made. Sometimes miraculous ones.

Feeding Difficulties…Things I Wish I Had Known

BabyBreast2Here she is.  My beautiful Sophie.  Feeding.  Looks all very normal doesn’t it?  But the reality is that this was a rare moment in time.  I suppose we don’t take pictures when we are busy dealing with a screaming infant.  And crying tears of our own. The truth is that feeding Sophie was fraught with difficulties.  Some of my earlier posts talk about the trials and tribulations.  Here are some things I wish I had known back in that dark and stormy time….

That my daughter’s difficulties with latching and feeding were in part due to low tone/ hypotonia  (http://www.healthline.com/symptom/poor-muscle-tone),  and not my inadequacy as a mother.

That my daughter’s reluctance to feed was exacerbated by pain from reflux…the pain of feeding became an association…”drinking equals pain, therefore why should I drink?”

That my milk supply was drying up as a RESULT of my daughter’s inability (and reluctance) to feed well, not because I was somehow incapable of supplying the milk she needed. (That should have been a “no brainer”. I started with milk spurting from both breasts, breasts rock hard and leaking. My supply diminished over time as her reluctance to feed increased.)

That (as a general rule) breastfeeding associations and lactation consultants are far more used to working with “neurotypical” children than children with “special needs”, and that, unfortunately, much of the advice they had to give was not going to help my daughter.  Being aware of that could have saved me a lot of pain in wondering why, even when I followed every (sometimes conflicting) instruction I was given, we were still experiencing difficulties.

That squeeze bottles designed for babies with cleft palates (http://www.cleftsmile.org/category/cleft-general/) can also be amazingly helpful for children without cleft palates, but who are having trouble with sucking and swallowing.  That piece of information could have saved us a small fortune.  When I weaned Sophie off the breast (in desperation) at 6 months, I think we bought just about every bottle and teat on the market.  Except a cleft palate bottle.

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That breast pumping (particularly with an electric pump) is difficult.  And can feel humiliating.  But that it is okay to struggle with it.  It is not meant to be easy.  And it is worth it.  Sometimes.

That once I was at the end of my tether with trying to pump, and finally had to introduce formula, I should have been offered the option of mixing some formula bottle feeds with some breast feeds, rather than being bullied by hospital nurses to completely wean my daughter onto a bottle.

That weaning your child off the breast is not the end of the world.  Sure, I would have LOVED to have breastfed Sophie until she was at least 12 months old, if not longer.  But in all honesty, it was better for my mental health (and therefore our whole family) for me to be able to share the feeds with my husband.

That my daughter would drink FAR better from a sippy cup than any bottle (perhaps due to the nipple/teat feeding experience being associated with pain?).  When we introduced her to one, she couldn’t hold the cup or tip it herself, so “technically” speaking, she wasn’t “ready” for one…but it worked.

That reflux medication is a temporary (and welcome) relief, but by no means the answer to “fixing” feeding issues.

That children with gastrointestinal issues and/or food intolerances and /or allergies can react even to specialised hydrolysed/hypo-allergenic formulas…even though some paediatricians will swear black and blue that it is “impossible” for a child to react to those formulas. As the formulas are “denatured”, and the proteins are broken down, so there is “no way” that those formulas can cause issues.  

That there is currently no standardised, accepted test for detecting delayed food allergies (also known as food intolerances).  There are many methods of testing (skin prick tests, patch tests, blood tests), but none of them are completely accurate.  These tests can be excellent for showing anaphylactic (immediate and often life threatening) reactions.  But some foods can “creep up” on your child.  Small amounts over several days can trigger reactions such as eczema or sore tummies.  And there is no reliable testing available.  If a child tests positive for a particular food intolerance, it is almost certain they are intolerant of that food.  However, if they don’t show a positive result, it doesn’t necessarily mean they can tolerate that food.  They may still be intolerant or allergic. There is a lot of trial and error involved to determine which foods may be causing issues for your child. 

That changing my daughter’s diet in an extremely radical way would change her life and ours forever.  For us, it was the GAPs diet (http://www.gapsdiet.com/) that transformed  our lives.  Sophie went from multiple stinky diarrhoea poos per day to normal gut function, and from waking every 45 minutes throughout the night to sleeping through.  I’m not suggesting that GAPs is the right approach for every child, I’m not a dietitian, I’m just a regular mum.  I’m simply stating that dietary intervention made a huge difference to us. And GAPs doesn’t have to wait until your child is on solids – there are protocols available even for infants who would ordinarily still be fully breastfed or formula fed.

That in the end, I already knew all this in my heart (except for the cleft palate bottle option, and the bit about the GAPs diet).  And that if I had my time again, I would not have allowed the medical profession to have so much power over me that I questioned myself at every step.

And most importantly…I wish I had known that, one way or another, I would figure it out in the end, and things WOULD get easier.  Sure, other “special needs” mums told me that, repeatedly.  But at that time, I really couldn’t believe it.  Our lives were consumed with trying to get nutrition into our daughter.  I was terrified.  I saw no end in sight.  But you know what? Those mums were right!  At some point, you will figure out a way.  Whatever it takes. And it will get easier. I’m not saying that a child who can’t eat will miraculously be able to eat.  But even if your child has to have a PEG (http://synapse.org.au/get-the-facts/peg-feeding-tubes-fact-sheet.aspx)…once you get there…once you finally figure out what needs to be done to get calories into your little one…the dark cloud will lift.

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To all you mums out there struggling with feeding. .. my heart goes out to you.  I wish you wisdom, peace and respite from the constant questioning and fear.  Listen to that inner guidance.  Trust that voice inside.  Do your research.  And then do whatever you think needs to be done. Whether that be persevering with breast feeding, bottle feeding, nasogastric feeding or a PEG.  It is incredibly difficult to listen to your gut when you are on high alert, stressed, fearing for your baby’s life as they “fail to thrive”, and being given advice by people who you believe to know better than you.  But as a loving mother, you have all the resources you need to figure out what is right for your child.  Research, join support groups for parents with special needs, and listen to your gut.  Don’t be afraid of being judged.  Best wishes to all of you who are in the dark place.  Keep the faith.