A Cure for FPIES?

Doing the GAPS intro has definitely given me some insight into how Henry must have been feeling during those early days on GAPS.  I remember him being very quiet, tired and taking a lot of naps the first few days.  To be honest,  I didn't blog during Henry's introduction to GAPS because I was afraid.   I was afraid it wouldn't work, that he would loose more weight and I didn't want to blog about a failure.  I was afraid to start GAPS in the first place.  Henry's GI doctor had suggested an elimination diet and that I journal for a six weeks to try to determine what foods were causing Henry's FPIES.  We had reached a point in his elimination diet where we weren't making any more progress.  Henry seemed stable, but even though he was willing to eat some gluten free foods, he wasn't gaining weight.  His diarrhea wasn't as profuse but it wasn't completely resolved either.  His appetite was decreasing to the point that after a while it was a battle to just get him to take a few bites of any food, he even refused sweet foods like pancakes and gluten free donuts. 

I had heard about GAPS but I honestly was so skeptical.   Could I seriously take my already starving child and put him on just broth?  Of course I hadn't read the GAPS book, so taking only pieces of information I assumed the entire idea was ludicrous.  As a nurse, I even questioned the safety of such a diet on a young child.  Yet when Henry stopped eating all together, broth seemed like something more nutritious than water or pedialyte, I KNEW I had to do something, and I had to do it fast.  I read the GAPS book.

For those of you who are skeptical, I understand.  I can tell you what GAPS is not.  GAPS is not a FAD diet.  Contrast to what I originally thought, it is not the ADKINS DIET, which was sold as a high protein diet for weight loss.   The GAPS Introduction is not intended to be followed for life, it is a short term nutritional plan to help quickly heal and seal the gut lining.   After reading GAPS and following the program, I doubt that you will ever be able to go back to eating a processed diet full of sugar and boxed foods, but you will not have to follow the strict introduction diet indefinately.  It is suggested that the Full GAPS diet be adhered for six months to two years depending on what ailments you started with..   Now that we've been eating this way for ten months, the thought of eating processed foods at all makes me feel ill. 

If your child is failure to thrive or has  FOOD INTOLERANCE'S that are not true allergies, I can tell you that GAPS is the best answer.  Will it be hard for you to change what you are doing and start GAPS?  Yes.  But FPIES was harder.  Not having any safe foods to feed my child was much more difficult than putting him through the GAPS program. 

What did your doctor tell you that FPIES was?  Food Protein Induced Enterocolitis Syndrome?  What is enterocolitis?   Inflammation within the colon or because of the word "entero" the inflammation can be anywhere throughout the intestines or colon.   You see this first hand when your child vomits instantly after eating, or has diarrhea for days after, blood in the stools, or cries in pain when eating a benign food that a normal child should be able to eat.   This diagnosis of FPIES is sure to be a frustrating one.  If Food Proteins are causing this Enterocolitis in your child, what are you to do?  Every food has protein in it!   Some of you have tried the broken down protein formulas like Neocate.  Sometimes this calms the body for a time, unfortunately my son and many other FPIES kids cannot tolerate such formulas.   Why would a child react to even a hypoallergenic formula?  Because the FOOD PROTEIN is not actually the problem.  Your child's intestines, his or her gut is the problem.  Something is wrong inside.  The body tries to tell us, we put a food in, and the child instantly rejects it, either by vomiting, diarrhea or both.  The reactions to the food can be violent.

 Did you think about how  the same thing happens when you have a stomach flu?  Why is that?  There is a virus lurking in the intestines, causing inflammation and for about 24-48 hours most of what you put in comes back up, this is the bodies way of protecting itself, it rejects food and sometimes liquids.   Doctors call the stomach flu gastroenteritis.    Interesting, that word sounds a lot like enterocolotis, that "itis" part also means inflammation.  What do pediatricians suggest when you have the stomach flu?   That you rest the gut, start with small sips of fluid and eventually add probiotics into the diet to help heal the gut lining which has been attacked by whatever virus you had.   Sometimes after an acute gastroenteritis patients will develop an irritation of their stomachs that last for even a month after, it causes symptoms of reflux, heart burn and intolerance to certain foods?  Interesting how similar this seems to FPIES, only it is more temporary.

FPIES is like living in a constant state of gastroenteritis or the stomach flu.  Imagine the entire gut being inflammed all the time.  Or imagine how you feel when you have the stomach flu.  Do you feel like eating  much of anything?   Maybe you start to feel better so you try a bite of banana, instantly you have severe abdominal pain and then start vomiting.  Now you NEVER want to try a banana again, or at least for a long time.   Do you see how when you are in this state of inflammation NOTHING is easy to digest.  The food isn't the enemy, your GUT is.  You have to heal the underlying inflammation and sickness inside you.  Along with the inflammation inside of you,  your body has been also been depleted of the good bacteria that normally keeps the gut in balance.  Many things can cause this disruption in normal healthy gut flora, vomiting, diarrhea, the use of antibiotics which kill the good bacteria along with the bad, and other medications.   Even doctors suggest that you try increasing probiotics after a bad case of the stomach flu.  Why is this?  Research has shown that probiotics help aid digestion, decrease diarrhea and reflux and they are important to over-all gastrointestinal health. 

The GAPS diet is a nutritional program that is designed to first heal the gut, there is an introduction diet that is very strict, but so is an elimination diet or the limited diet you are now on because of FPIES.  The beginning stages of GAPS are intended to rest the gut, you are giving only things that are easy for the inflammed stomach and intestine to digest.  You avoid fiber, which as you can imagine is grainy and difficult to process when you have adhesion's and inflammation in your intestines. 

There is a huge focus on increasing the amount of probiotics that you are taking.  Not all probiotic supplements are the same.  A good probiotic should have at least 8 billion of bacterial cells per gram and have a mixture of several strains not just lactobacilli.  Many of our children have intolerance's to food so finding an allergy free probiotic can be a challenge.  We have found one we love called GUT PRO, the entire family uses it and I would suggest it as a place to start.  Probiotic foods can also be added into the diet to aid digestion.  The GAPS program suggests starting with a little sauerkraut juice first added to broth and slowly increase.  Bubbies brand makes both pickles and sauerkraut with live bacteria cultures.

Today I was speaking to FPIES, because it is on my heart and I know that many people are looking for hope.   My son Henry had numerous endoscopes, bronchoscopies, stool studies, allergy testing and the like.  We tried NEOCATE and could not tolerate it.  I came to the GAPS diet desperate to heal my son, not just put a bandaid on a growing wound and wish it would go away on its own.  The doctors ran out of ideas for his failure to thrive, even force feeding him through a G-tube didn't fix it, because he had so much diarrhea he wasn't absorbing any nutrients. 

There is a reason that Doctors do not understand FPIES and do not know how to treat it.  American medicine hasn't linked our diet to disease.  Some doctors understand a little bit of the connection, but not to the extent that is needed to help people with serious ailments.  Once a Russian friend of mine told me that in her country she had never gone to a doctor who didn't first ask her, what is your diet like?  I found this interesting that other cultures look at the WHOLE person, the diet, the enviroment ect.  Of course there are many enviromental issues that go into how our food is processed today, including mass production, GMO foods, hormones added to foods, and antibiotics.  Also, we are exposed to numerous chemicals and toxins in our every day enviroment that we aren't even aware of, her is a short film about the chemicals in our daily lives. 

Of date, there are no medications to specific to treat FPIES, although I believe they will try steroids in the future, because this is the way that medicine deals with inflammation in the body.  The only problem is that steroids have numerous side effects and actually decrease the good bacteria in the gut, encourage the growth of Candida Albacans or yeast, and decrease the bodies immune system and natural ability to fight disease.  Doctors hope you will grow out of FPIES but they don't understand why it is occurring in so many children. 

I find it interesting that most of us mothers of children with FPIES also have issues with our guts, either IBS, celiac, thyroid disease, PCOS, or various other autoimmune diseases.  Is it any wonder that we passed down unhealthy GI tract to our babies?  Also, due to many of Henry's early issues he spent his infant days on many antibiotics, steroids and breathing treatments, which though temporarily helped his symptoms, I believe damaged his gut further by upsetting the balance of good bacteria in his gut and lead to further inflammation.

Today the only evidence of Henry's past struggles with FPIES is a tiny scare on his belly, which he thinks is a second belly button.  It is the scar left from the G-tube, and it reminds me that all the efforts I made to find an answer finally paid off, that my prayers were answered and God lead me to find the GAPS program.   I can hear the skeptics calling out?   My kid is so sick, you have no idea what I'm going through.  You are right, I have not walked in your shoes.  But my son was very sick and I was once told that he may never be able to eat like a normal child.  I can hear the exhausted mothers saying.  "It's too hard, I just can't do one more thing right now."   

I know it's hard.  But you can do it, one step at a time.  If you can't do the introduction diet right now, here are a few suggestions.

Read the book on GAPS, arm yourself with some information, even if you don't do the full program you will learn about foods that can help heal and rest the gut.

Start your child on a probiotic, find a good one like I suggested above.
If you can't do the intro right now, try to just start by going gluten free and getting started on an elimination diet first if you aren't already and then try to go to the FULL GAPS diet which is less restrictive.

For FPIES, I believe if you really want to have full remission of symptoms and the ability to eat more variety of foods the GAPS Introduction and going through the stages is necessary to allow the gut to have a rest and to heal.

Is there a cure for FPIES?   For us GAPS was that cure.   I am happy to report that my son can tolerate many of the foods he could never eat before, he can tolerate milk in all it's forms now which previously caused vomiting, diarrhea/sometimes with blood, and becoming limp and lifeless.   'We've only been on GAPS for ten months.  Only a few months after starting GAPS my son was slowly gaining weight for the first time ever in his life and was not having reflux or chronic diarrhea as he had prior.    Please feel free to contact me with any questions and be sure to check out the GAP kids link.

GAPS Intro: Day One Here I go!

Last Novemember we started little Henry on the GAPS diet.  At that time he was considered failure to thrive, he weighed just a little over 20 lbs at 30 months old.  In an effort to help Henry heal his issues with chronic aspiration, difficulty swallowing, chronic diarrhea, lack of growth, reflux and asthma like symptoms;  I put the entire family on a gluten-free-dairy-free diet for close to a year before we even discoverd GAPS. 

The GAPS Diet is based on Dr. Natasha Campbell-McBride's book Gut and Psychology Syndrome.  The purpose of the introduction  Diet?  In her own words "To heal and seal the gut lining quickly."    I personally like the words "quickly."  This of course can mean different things to different people.  She mentions that most people will need about two years to heal their body, some more, some less.  Many people come to GAPS with a host of medical and or psychological problems.  While others may only have  simple digestive issues.   I can't recommend more highly,  that you begin by reading the book, no matter what your situation.  The book will  help you to understand the basis behind the diet and why.  I personally feel that no matter where you fall in the spectrum of chronic issues or if you feel you are in optimum health,  you can still benefit from the diet and the principles Dr. Natasha teaches about having a healthy gut.   She discusses how chronic health issues, autoimmune diseases, autism, celiac, seizures, OCD, schizophrenia and basically all disease originates in the gut.  If you can heal your gut, you can heal your body. 

Last November, we put Henry on the introduction diet and went through all the stages with him until just a few months ago  he was able to "graduate" to the FULL GAPS diet it.  Eleven months later Henry has gained four pounds and he has grown several inches in height.  He can eat many foods that he could not tolerate prior to GAPS including dairy, which used to cause him to become very sick.  This included abdominal pain, vomiting and having days of diarrhea sometimes with flecks of blood and weakness afterwards.  I am AMAZED at the healing that has transpired in my son due to his progress on the diet.   The rest of my family remains on the FULL GAPS diet which allows for most fruits and vegetables but is free of grains, starchy vegetables and most beans except white beans, lentils and green beans.   Our family hasn't tried lentils yet.

I didn't personally do the GAPS Introduction Diet because I felt that I couldn't handle my body detoxing while I was trying to start Henry on the Intro.  Everything GAPS was so new to me at the time and I felt really overwhelmed as I started the diet for him.  I felt that I needed to have the energy to cook for him and so I just started eating the full GAPS diet which is less restrictive.  Over the coarse of the past few months, just doing full GAPS I have improvements in some of my symptoms which included abominal pain, body aches and fatigue.   

Prior to beginning GAPS I was dealing with what I thought was" chronic care giver fatigue".  I don't know if that is the official terminology, but that's what I call it!    You mom's know what I'm talking about, this is the fatigue that comes from taking care of a sick child night and day.  It is the fatigue that comes with fighting what feels like a loosing battle when doctors run gamuts of tests and tell you they have no idea what is wrong with your child and they aren't sure if they can ever fix it.  It was the fatigue of me working night shifts and trying to also take care of a sick child and three other children; at the time my husband was unemployed and then under-employed for almost two years during the most difficult time of Henry's illness.  Naturalpaths like to call this adrenal fatigue.  The adrenal glands are responsible for your "fight or flight" hormones.  News flash, you aren't supposed to LIVE in fight or flight mode for years at a time!  Warning:  If you do, you drain your body of certain hormones, you end up with chronic fatigue or adrenal insufficiency.   Eventually your body just says: I've had enough.   Most days I was so tired I wanted to just sit around and do nothing.  Note: working nights shifts doesn't help this any.  I felt like I had constant brain fog.  I started to use caffeine as a way to stay awake, the only problem was I had to keep drinking it all day to stay awake.  Then I couldn't sleep at night.   I KNEW I was addicted to caffeine, but I couldn't give it up--wait, isn't that the definition of an addiction?    Also, for the past several years I had this horrible abdominal pain on the right side under my ribs.  Sometimes it would be associated with nausea, bloating and feeling like I   couldn't eat for hours.  I had every test run because it really seemed like my gal bladder, but everything came back negative.   Then I started just feeling like my bones ached ALL the time, I started to feel like an old woman and I am only thirty-two.  Some days it hurt to walk.  I knew that I needed to exercise but I was having too much pain and I was too tired to imagine even trying.

Like every other mother, I pushed my own health aside and focused on my children.  A few months ago, with Henry finally feeling better on GAPS I decided to have my labs drawn.  I found out that my vitamin D levels were extremely low.  I'm happy to report after just a few weeks of being on a vitamin D supplement, the fatigue improved, the bone pain and body aches resolved.  Man that vitamin D is important for a lot of thing!   I also felt like prior to starting the vitamin D supplement I was feeling anxious and also easily frustrated, that too went away after supplementing. 

So now that Henry is on the Full GAPS Diet and GAPS itself is a regular routine in our home.  I'm ready to take the plunge into the GAPS INTRO.  Remember how I mentioned that I WAS addicted to caffeine?  I gave it up about a month ago.  COLD TURKEY.  I did the unthinkable.  I stopped drinking it one day.  Not because I wanted too, but because I had too.    Even though I've been on FULL GAPS for ten months, I never had given up coffee, I was drinking a pretty strong brew, and almost a pot a day!   Suddenly one day after drinking it, I started having severe abdominal pain and nausea and the chills.  Not sure what it was but, every time I drank it I would feel this way.  I assumed I must have burnt a hole into my stomach from drinking so much coffee, so I quit.  With the last major hurdle out of the way, I was ready to begin the GAPS INTRO.

So hear I am, I started it today, I'm ready to finally take the time to heal my gut once and for all.  Have I been avoiding the intro?  Of course, I am so scared of detox and more fatigue!   Only this time, I KNOW what's around the corner; because I put my son on the intro and there is an amazing difference in his health today.  What's the secret thing that Henry and I share that I like to pretend isn't happening because I'm so used to my body being ill?   Every day of my life for as long as I can remember I've had cramping followed by diarrhea several times a day.  I always attributed it to "lactose" intolerance.  On the FULL GAPS diet, the bloating and pain has significantly decreased.  But I still have the runs, more often than I'd like to admit.  I'm just used to it.  But I know this isn't normal.  Much of my fatigue, bloating and stomach pain has improved on Full GAPS, but I still have reflux and pain from time to time that I would like to get rid of once and for all.

So here I am, FINALLY trying to take a step in the direction of taking care of myself, so I can hopefully be healthy long term and have the energy to take care of my family.  Today is DAY one of the intro and it looked like this:

Breakfast
Took my GUT PRO pro-biotic powder with water
Drank my chicken broth and had some grass feed beef that I had cooked for over 24 hours in my beef meat broth, mixed in my homemade pickle juice for a good pro-biotic source, you can also try kraut juice, and if you can't make your own check out Bubbies!  .
Had my cod liver oil--not fermented, gonna have to work up to that--I know it's the best kind!
Snack:  Drank my Kombucha, probably not recommended for the intro for kids, but I've been drinking it for a long time and it really sooths my stomach, it has an affect much like apple cider vinegar for me as far as aiding digestion.  I LOVE Kombucha and might have to post about it some day, but for now check out the link to make your own.
Lunch:  Grassfed/beef meat broth, with a little whey mixed in
Snack: Chicken broth with whey
Dinner:  Haven't had it yet but more of the same

So as you can see, the preparation part is pretty easy.  Just make a bunch of broth and be sure to have your probiotics, cod liver oil available  before you start. 


How I'm feeling today:

When I first started GAPS last November I felt REALLY nauseated when I drank broth, and then EXTREMELY tired.   If  you are doing the intro and are coming off a TRADITIONAL American diet, be prepared to feel a little off.  Start out slow and be nice to yourself.  Start the intro on a weekend so you can rest and have someone home to help out with the kids.   Mixing the pro- biotic juice from sauerkraut really helps with the nausea and digestion. 

Thankfully, because I am used to eating good fats like coconut oil, lard, real butter, raw milk and cream I'm not feeling nauseated even drinking broth that has oil pooling at the top of it.   What I do have is a headache brewing and I feel really sleepy and a little irritable, watch out family!  I'm also extreemly thirsty and having to drink much more water than I normally would.  I think I will go to bed early tonight, hum maybe I'll do a detox bath, that sounds relaxing.