Friday, September 7, 2012

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.

10 comments:

  1. Thank you for sharing what worked for you. I'm up looking for answers. I'm so glad you have found something to help your baby. my son just turned 9 months. he reacted at 6 months old to his first two foods avocado and banana. ever since I've just been exclusively breastfeeding and letting his stomach rest. he's thriving thank God but it's getting close to the first bday so I know of course I'm going to need ti try foods at some point. But it's so scary. so I always look for what worked for other kids on here. thank you for sharing because I will go study the gaps now so that I will know how to start when I do give him food. I'm lucky he doesn't react through my milk so I don't plan on stopping that of course but one day of course hell need more than just my milk so I'm watching the scale.to make.sure he keepsgaining. it feels very lonely I hurt for him and worry about his future. I have a homeopathic doctor he's good but he also seems to not know much about it. the allergist immunology Dr. diagnosed him though but that was really it. the homeopathic Dr seems to be questioning me a lot along with everyone else it's very frustrating. people act like we exaggerate. I wish they'd just look it up instead of judging. it's hard enough. God bless you and your family thank you again. I wonder if breastmilk is good enough as a probiotic....or if he needs one when we start. I wonder if I take a probiotic,he can get it thiugh my milk. I usually eat really good food we get it from the Amish co op but I do indulge in snack sometimes although he doesn't react through ny milk maybe if I take a probiotic he can get it through me. I havee eczema. I bet that's the immunity issue that contributed to this. right now I have a bout of eczema on my ankle and he has a mat hung one :( as hard as this is I have to thank God that this is the club I had to join because I know that there are parents out there in way worse ones that wish they could join this club :( it's still so hard though. thank you for the advice and for letting me vent! .....this thing said to comment as google account I wonder if I'm.on mine or my husbands.
    -Emily

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  2. Oops I meant he has a matching one. matching eczema patch oops sorry.I'm typing on my phone. I had to create that blogger google thing to be able to comment. I didn't even know google blogger would be easy like that to create maybe I'll make.one n keep up with it. sorry for the terrible typos I'm on this tiny keyboard!

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  3. Em, thanks so much for sharing. It is so hard when you feel like the doctors aren't understanding what you are going through. I think many try too, but they aren't living it every day as we are. I am glad you've found a club that can help support you. Please feel free to check out our GAPS Kids network on facebook. You can join just to talk to other mom's and ask them questions even if you haven't made a decision about doing GAPS it helps to with researching the program and seeing what others have learned. Many women start with reading the section Dr. Natasha has about introducing solids to a breastfeeding baby, I've added it to my RESOURCES link, so start with that. It gives a great way to start which is much different from the normal advice to introduce rice cereal which I think is very difficult for most babies to digest. It is great that you are breastfeeding, that gives your baby a great start, I would imagine that a probiotic would be helpful for both you and your baby, some healthfood stores contain probiotics that are allergy free, or you can try the GUT pro that I have listed on my blog, I really like it and I by the concentrated powder so my entire family can take it. It sounds like you are a great mom and on the right tract. God bless.

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  4. Kristina you hit it on the nose. A very good post.

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  5. Great post Kristina! Way to get the word out there!

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  6. Just wanted to tell you thank you for your story. My baby is doing great on GAPS and if it werent for your blog i never would have known to try it thank you for saving us from unneccessary hurt. God bless you!
    Thank you,
    EM

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  7. Hi I have a lot of questions. My 8.5 son is protein intolerant to multiple foods through my breastmilk, his reaction is blood in the stool. I have been on a severe elmination diet for 7 mos. When we started trialing solids it has been a disaster. He has passed lamb but not any others. I started him on lamb broth but he will only take a few spoonfuls, i don't know how to get him taking more. Should I wait to give him any actual foods until he takes in more lamb broth on a regular basis? is gut pro free of all allergens including corn? did you start it right away or wait until the gut was sealed? what fermented food is best? how long do i stay on the broth before adding foods?

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  8. Thanks for sharing your story. My 13 month old daughter was diagnosed yesterday w/ FPIES to eggs. We are unsure to what else becuase dairy, wheat/gluten, soy, nuts/pb haven't been introduced yet and I'm terrified to introduce them. I'm currently reading the GAPS book and considering starting the diet. I guess my biggest question is timing...

    -my daughter is still nursing and I'd like to nurse until she's 18 months to help my fertility for baby #2 (I have endometriosis among other things)
    -from what I can tell, she can't do GAPS and still be nursing?
    -how would I transition her from stopping nursing? Would we go straight to GAPS and then introduce cow's milk later on?
    -I'd like to do everything with her because I need it too...but I know I can't be nursing or pregnant and do intro...
    -when I'm done nursing in Sept (when she's 18 months) I want to start trying for baby #2 and I'm assuming I'd have to be through the first few stages of GAPS to be safe for pregnancy??

    SO much to consider, but I want to be as healthy as possible for baby #2 and help my daughter's FPIES as much as possible. Any thoughts would be greatly appreciated!

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  9. My daughter who is 11 months has FPIES to rice, oats, and through blood test found out severe allergy to eggs. I wanted her to see specialist for FPIES but the docs wont give me a referral. Im afraid to try her with many things foodwise. She also has only 2 bottom teeth so she isnt really ready for solids yet. She eats alot of stage 2 fruits and veggies, and seemed to tolerate beef when we tried it a few times, but she doesnt like the texture. I had an umbillical hernia when i was prego with her, i also have IBS. i noticed when i was prego with her she had the hiccups ALOT. She still gets them quite often. My 3 older children have no food allergies though. But im at a loss on introducing her to more foods.

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  10. Can someone provide please me with a link to the GAPS Kids Network Group on Facebook?
    My baby is 7 months old and has been losing weight. I'd like to find out at what stage I can start her on the GAPS program. Thank you in advance! xx

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