As we have transitioned Ellie onto the GAPS introduction diet (designed for healing), we have begun to use the phrase 'die off' more and more frequently. It has taken us quite some time to figure out what 'die off' is, and how it specifically applies to Ellie. I have listened to other moms talk about it, researched it, and checked various GAPS support groups for more information. What is die off? How do you know if what you are seeing is die off or a reaction? When do you know if it is too much die off? Can things other than a probiotics cause die off? The questions kept coming, both in our house and in my conversations with other moms of protein intolerant kiddos. I certainly do not have the answers, and am far from being a doctor, but here are some tips on what I have discovered.
Die-off is a positive phrase used to describe negative symptoms that can happen when introducing a probiotic, or probiotic food. In my limited experience, it does not seem to be a medical expression used or understood in the traditional western MD office, but then again, probiotics are not usually discussed there either. The reason? My favorite GI said that there are not adequate studies showing that they make a difference. I found this peculiar so I checked the references used by Dr. Campbell-McBride when writing an entire chapter on the medicinal use of probiotics. In the index of my GAPS book I found FOURTY-FOUR (44) accepted medical references. Way to go Western Medicine (insert sarcasm here).
So, the question remains, what is die off? The body is a host to millions of bacteria. They need to live happily together in a harmonious balance for us to be at our peak of health. Unfortunately there is an unmeasurable list of things that will get them all out of wack. The most common ones discussed are antibiotics, illness, and refined sugar. All of these things and many more cause an imbalance, and symptoms ranging from allergies to eczema to asthma to who-knows-what can erupt. When you disrupt these out of balance bacteria they die, hence the 'die off' effect. The death of the overgrown buggers release extra toxins into the body systems. The 'die off' is usually seen as increase in problematic symptoms. Most common is eczema or rash. But it can be an increase in ANY of the symptoms that your body is suffering from as a result of this unhealthy condition. Unfortunately this is unique to every single individual, so while some are common, there is no way to say exactly what it will be.
Ellie's die off has ranged from mild to severe flares with her eczema, to reflux, to acidic poop, to a more bloated belly than normal. These symptoms have all mimicked an FPIES reaction/fail at some point and have been very confusing to push through. The more bizarre symptoms have included a change in tongue color, itchy nose, emitting a sweet smell, and regression in speaking. Her symptoms were worse when we first began the diet of broth, and also at the introduction of her probiotic. With each slight increase in the probiotic dose her die off flares for a couple of days and then goes away.
I fully expected her worst die off to be seen with the introduction of a purchased, in the bottle multiple strain probiotic. I was wrong. When we were finally able to begin giving her fermented cabbage juice (like the juice from sauerkraut made of only cabbage) her die off was the worst yet. We started with only 1/8 of a teaspoon of juice in one bottle per day, and stayed there for a couple weeks. It was hard on her. We then finally increased the dose to 1/4 teaspoon in one bottle per day, and her eczema went berserk. She was waking at night crying and scratching. She never did this while even on formula (corn). Dr. Campbell-McBride responded that this was her body ridding itself of toxins. Holy cow! How many toxins could her little body possibly be hanging on to? After about a week of her nighttime episodes I reduced the fermented cabbage juice back down to only 1/8 teaspoon. In a few weeks we will try increasing the dosage again. I now understand why the fermented vegetables are such an important part of her diet. One more win for natural foods.
For those of you who have made it this far and are actually looking for information on die off, I will include this last note: die off can occur from food. There is a short list of probiotic foods that can cause die off, specifically in those with severe gut dysbiosis. Let's take the bone broth, for example. I did not recognize some of Ellie's symptoms as die off when we first started her on the bone broth and meat. (cut me some slack, there was a lot going on!) But now looking back I see them clearly. How does that work? The bacteria in the intestine (and body if it has spread) has to eat. It LOVES to eat those yummy carbs that you ingest through sugars, starches, grains, etc. When you restrict your diet to that which requires very little or no digestion, the food passes right on by, starving those nutrition robbing bacteria....which then die. The final result = die off.
Ta Da! Die off: the mystery behind the words is not much of a mystery after all. It is simply bacteria...dying off.
Sunday, May 29, 2011
Tuesday, May 24, 2011
Corn Part 2 - On To Eggs
One of the most ridiculous things to find corn free is meat and eggs. We found a local farmer who has switched his eggs over to being corn and soy free after receiving an email from me. When I asked him why, he said he had already been on that path. I am so grateful!
We have switched our family over to his eggs which are completely comparable in price to conventionally fed eggs found at the farmer's market. And I have waited and waited and waited and WAITED for the right time to feed them to Ellie. We planned to start with the raw egg yolk (the proteins in the yolk and white are different, and the yolk is particularly rich in nutrients and easy to digest).
The day before giving her the egg yolk she was gifted a balloon from the supermarket. We spent the day telling her to get the string out of her mouth. She kept putting it in sideways and sucking on it. That night she complained of her eczema and kept scratching at her arm creases and the backs of her legs which were flaring up. I grabbed a small Melaleuca Tea Tree oil product from the pantry and rubbed it on those spots. She fussed. I thought it was odd since tea tree oil always helps my eczema, but wrote it off to it burning.
The next day we started egg, but she was acting a little funny. About mid day I noticed she had red marks on the sides of her mouth. The string from the balloon had left marks. Well, burns actually.
These pictures are a bit grainy, but you can still see the corners of her mouth and her reaction face.
What could this reaction possibly be to? None other than corn. One latex balloon powdered with corn starch left burns on her face.
I put the breaks on the egg, and rubbed my own eczema with the tea tree oil. It itched! What in the world? I flipped it over and on the back in the most microscopic print were 'other ingredients'. UGH. I knew better than that! And what was listed? Wheat germ and corn oil. Into the garbage it went.
The good news is that it only took her about 32 hours, one fussy night, and two reaction poops to move past this exposure, compared to what used to be weeks of recovery. Hooray once more for healing. Today she would point to the scabs at the corner of her mouth and say 'owie', but they were noticeably better. And we braved forward with egg yolk once more today. So far so good!
We have switched our family over to his eggs which are completely comparable in price to conventionally fed eggs found at the farmer's market. And I have waited and waited and waited and WAITED for the right time to feed them to Ellie. We planned to start with the raw egg yolk (the proteins in the yolk and white are different, and the yolk is particularly rich in nutrients and easy to digest).
The day before giving her the egg yolk she was gifted a balloon from the supermarket. We spent the day telling her to get the string out of her mouth. She kept putting it in sideways and sucking on it. That night she complained of her eczema and kept scratching at her arm creases and the backs of her legs which were flaring up. I grabbed a small Melaleuca Tea Tree oil product from the pantry and rubbed it on those spots. She fussed. I thought it was odd since tea tree oil always helps my eczema, but wrote it off to it burning.
The next day we started egg, but she was acting a little funny. About mid day I noticed she had red marks on the sides of her mouth. The string from the balloon had left marks. Well, burns actually.
These pictures are a bit grainy, but you can still see the corners of her mouth and her reaction face.
What could this reaction possibly be to? None other than corn. One latex balloon powdered with corn starch left burns on her face.I put the breaks on the egg, and rubbed my own eczema with the tea tree oil. It itched! What in the world? I flipped it over and on the back in the most microscopic print were 'other ingredients'. UGH. I knew better than that! And what was listed? Wheat germ and corn oil. Into the garbage it went.
The good news is that it only took her about 32 hours, one fussy night, and two reaction poops to move past this exposure, compared to what used to be weeks of recovery. Hooray once more for healing. Today she would point to the scabs at the corner of her mouth and say 'owie', but they were noticeably better. And we braved forward with egg yolk once more today. So far so good!
Sunday, May 22, 2011
The Never Ending Corn Story: part 1
Each step adjusting to Ellies FPIES diagnosis has been a steep learning curve, and each home change has required serious work. Except for corn. Corn granted me my first official panic attack.
Ellie recieved her diagnosis of extreme corn intolerance from her allergist. He read the results of her atopic patch test (APT), and knowing her extremely limited diet of amino acid based formula and pit fruits at the time, he sharply turned to me and said WHERE is she getting corn??? Of course I replied that she wasn't. I was not feeding her corn! He insisted she must be. He believed the reaction could not be so severe without continued exposure. YES she is. He insisted. WHERE is she getting CORN!?
I was offended! I was baffled! He promptly reached into my diaper bag and grabbed her can of formula, flipped it over and began reading the back. I was ticked he had grabbed into my bag.
RIGHT HERE, he declared. The FIRST INGREDIENT. He tossed the can at me and then said: We have to get her off of that. What else can she have?
My jaw hit the floor at that point. Well, lets see. She couldn't have breast milk. She reacted violently to two other amino acid based formulas. And oh...that's right. EVERY baby formula made in the existence of the WORLD (this is not an exaggeration) has a corn base. Yup. Thats right. Corn.
This was not going to go over well with the GI. I knew it. It was very rare to find an allergist that believed a child could have a reaction to the highly processed corn base in the hypo-allergenic prescription grade formula. But hey, thanks to Ellie we are all about breaking those assumptions. After all, the formula is HYPO allergenic, not NON allergenic. And if it was not possible to react why would there be so many different ones with various degrees of soy oil, MSG, and other lovely ingredients?
I was suprised to find the GI somewhat supportive. The actual problem was figuring out what to feed her. I was also surprised that it did not go over very well with me. At this point I should have been used to adjustments.
After this information I headed home and began to process how to remove the corn from my home. I googled and found some living corn free sites, and then all of a sudden I couldn't breath. I actually had to get up and pace back and forth, tears streaming, and feeling suffocated. I called a good friend and said help! talk me down! And she was able to...somewhat.
Since that time about 5 months ago, I have found my fear and anxiety turn into anger. A corn allergy is a frightening thing in today's world. Lotions, shampoos, preservatives, plastics, medications, salt, bottled water, department store meat, disposable diapers. Citric acid, dextrose, distilled white vinegar, fructose, vanilla extract, MSG, alcohol. All of these things can leave burns on Ellie's skin. Our entire home has been flipped upside down.
Ellie recieved her diagnosis of extreme corn intolerance from her allergist. He read the results of her atopic patch test (APT), and knowing her extremely limited diet of amino acid based formula and pit fruits at the time, he sharply turned to me and said WHERE is she getting corn??? Of course I replied that she wasn't. I was not feeding her corn! He insisted she must be. He believed the reaction could not be so severe without continued exposure. YES she is. He insisted. WHERE is she getting CORN!?
I was offended! I was baffled! He promptly reached into my diaper bag and grabbed her can of formula, flipped it over and began reading the back. I was ticked he had grabbed into my bag.
RIGHT HERE, he declared. The FIRST INGREDIENT. He tossed the can at me and then said: We have to get her off of that. What else can she have?
My jaw hit the floor at that point. Well, lets see. She couldn't have breast milk. She reacted violently to two other amino acid based formulas. And oh...that's right. EVERY baby formula made in the existence of the WORLD (this is not an exaggeration) has a corn base. Yup. Thats right. Corn.
This was not going to go over well with the GI. I knew it. It was very rare to find an allergist that believed a child could have a reaction to the highly processed corn base in the hypo-allergenic prescription grade formula. But hey, thanks to Ellie we are all about breaking those assumptions. After all, the formula is HYPO allergenic, not NON allergenic. And if it was not possible to react why would there be so many different ones with various degrees of soy oil, MSG, and other lovely ingredients?
I was suprised to find the GI somewhat supportive. The actual problem was figuring out what to feed her. I was also surprised that it did not go over very well with me. At this point I should have been used to adjustments.
After this information I headed home and began to process how to remove the corn from my home. I googled and found some living corn free sites, and then all of a sudden I couldn't breath. I actually had to get up and pace back and forth, tears streaming, and feeling suffocated. I called a good friend and said help! talk me down! And she was able to...somewhat.
Since that time about 5 months ago, I have found my fear and anxiety turn into anger. A corn allergy is a frightening thing in today's world. Lotions, shampoos, preservatives, plastics, medications, salt, bottled water, department store meat, disposable diapers. Citric acid, dextrose, distilled white vinegar, fructose, vanilla extract, MSG, alcohol. All of these things can leave burns on Ellie's skin. Our entire home has been flipped upside down.
Food Aversion
Ellie has a food aversion. She doesn't take the spoon, she refuses to let us feed her, and she often does not put things in her mouth or swallow them at all. We have spent days reflecting on this, and have had doctors recognize her delays as being connected to her protein intolerance. We have discussed how she has learned this behavior because of pain. But today I wonder if that is the case.
Every FPIES mom, at some point, must tell their child 'no, you can not eat that'. Today I found a post I wrote when Ellie was 13 months old. She wanted food. She fought me for food. And I told her no. For the sake of keeping her safe, I would not let her join in on what she saw us all doing - eat.
She was 13 months old. She was not at baseline, and she was most definitely in pain. She was bloated and had never known what it was like to not barf everything up that she put in her mouth. Yet she still begged. And reading this older post had made me wonder - perhaps it is more of a learned behavior, that we now have to un-do. I have spent months running around behind her, taking things out of her hands, out of her mouth, and not letting her have anything except for her bottle. Can I blame her that she is so attached? Can I be surprised that she wants nothing else, and that she is offended and visibly shook when I try to even change the nipple?
Another FPIES mom recently had her twins go from not eating, to swallowing and asking for more soup, within a matter of days. That to me is amazing. And that to me shows that this is something that is now up to Ellie. I have taught her to be protective of her own mouth, and have shown her the importance of being careful. Now I pray that she will move past that sense of security and become a part of our family table.
I searched for months on craigslist until I was able to find a specific high chair that would allow her to be at the table with us and look like us.
She is using it, and in the last week she asked twice to be fed water from a bowl while we ate dinner. Last night I tried to feed her broth the same way, and she was less receptive.
Perhaps she will soon make the connection of making that food fill up her belly. And perhaps she will understand that it does not have to come from her bottle. Until then, I suppose I have a toddler on a bottle. Oh, well!
Every FPIES mom, at some point, must tell their child 'no, you can not eat that'. Today I found a post I wrote when Ellie was 13 months old. She wanted food. She fought me for food. And I told her no. For the sake of keeping her safe, I would not let her join in on what she saw us all doing - eat.
She was 13 months old. She was not at baseline, and she was most definitely in pain. She was bloated and had never known what it was like to not barf everything up that she put in her mouth. Yet she still begged. And reading this older post had made me wonder - perhaps it is more of a learned behavior, that we now have to un-do. I have spent months running around behind her, taking things out of her hands, out of her mouth, and not letting her have anything except for her bottle. Can I blame her that she is so attached? Can I be surprised that she wants nothing else, and that she is offended and visibly shook when I try to even change the nipple?
Another FPIES mom recently had her twins go from not eating, to swallowing and asking for more soup, within a matter of days. That to me is amazing. And that to me shows that this is something that is now up to Ellie. I have taught her to be protective of her own mouth, and have shown her the importance of being careful. Now I pray that she will move past that sense of security and become a part of our family table.
I searched for months on craigslist until I was able to find a specific high chair that would allow her to be at the table with us and look like us.
She is using it, and in the last week she asked twice to be fed water from a bowl while we ate dinner. Last night I tried to feed her broth the same way, and she was less receptive.
Perhaps she will soon make the connection of making that food fill up her belly. And perhaps she will understand that it does not have to come from her bottle. Until then, I suppose I have a toddler on a bottle. Oh, well!
The Sun: More Than Your Average Ball of Fire
After taking a look at Ellie's Vitamin A levels, I took a look at her Vitamin D. Another mom quickly reminded me that I was forgetting about the sun. Oh, yeah! What happened to all of those articles saying that Vitamin D comes from the sun? Why the focus on getting Ellie into eggs?
Yes, the best resource for Vitamin D is the sun. Hands down, it is the easiest way for our bodies to make it when the rays hit the cholesterol in our skin. There is a lot of controversy about skin cancer, and sun, and sun screen, and tanning. Honestly I do not have the time right now to research it all or try to get to the bottom of something funded so obviously by big business. It will have to go on the 'when I get to it' list. What I do know is this:
-God really had something in mind when he made the universe and even gave the stars and planets their jobs. A ball of fire in the sky that gives vitamins to our body? Now that is pretty amazing.
-Ellie needs lots of Vitamin A. Now that the rain is finally deciding to move past us, I will be forcing her to spend some time outside every day. It will be in small increments and then increase so that she can build up her gradual tan. Next winter, perhaps we will even learn from her older sister and take up dancing in the rain. Any sunlight counts!
-Ellie will not be using sunscreen (nor will her sister). There is not a 'safe' sunscreen on the market, and there is lots of disagreement over whether or not intake of vitamin A is restricted with sunscreen use. She will be wearing lots of hats, long sleeve shirts, and other coverage if needed. Does this make me nervous? Absolutely! My brain is about to explode from all of the change in our family. But at least I no longer have to devote so much to searching for a sunscreen that is 'natural'.
-Ellie has a toxic body. It is full of proteins that have leaked past her protective intestinal barrier, and is full of what which she inherited from me (another post entirely). These toxins and intestinal issues make her need for Vitamin A great, which is why the food supplements are so incredibly important for her.
So on to egg. Here we go, hoping for a pass!
Yes, the best resource for Vitamin D is the sun. Hands down, it is the easiest way for our bodies to make it when the rays hit the cholesterol in our skin. There is a lot of controversy about skin cancer, and sun, and sun screen, and tanning. Honestly I do not have the time right now to research it all or try to get to the bottom of something funded so obviously by big business. It will have to go on the 'when I get to it' list. What I do know is this:
-God really had something in mind when he made the universe and even gave the stars and planets their jobs. A ball of fire in the sky that gives vitamins to our body? Now that is pretty amazing.
-Ellie needs lots of Vitamin A. Now that the rain is finally deciding to move past us, I will be forcing her to spend some time outside every day. It will be in small increments and then increase so that she can build up her gradual tan. Next winter, perhaps we will even learn from her older sister and take up dancing in the rain. Any sunlight counts!
-Ellie will not be using sunscreen (nor will her sister). There is not a 'safe' sunscreen on the market, and there is lots of disagreement over whether or not intake of vitamin A is restricted with sunscreen use. She will be wearing lots of hats, long sleeve shirts, and other coverage if needed. Does this make me nervous? Absolutely! My brain is about to explode from all of the change in our family. But at least I no longer have to devote so much to searching for a sunscreen that is 'natural'.
-Ellie has a toxic body. It is full of proteins that have leaked past her protective intestinal barrier, and is full of what which she inherited from me (another post entirely). These toxins and intestinal issues make her need for Vitamin A great, which is why the food supplements are so incredibly important for her.
So on to egg. Here we go, hoping for a pass!
Saturday, May 21, 2011
Reflections
I have this other blog. I started it before Ellie's, and I never really worked out the focus of it. About 5 months ago I just quit writing on it because it felt like too much of a diary, and I have been uncomfortable putting so much of myself out there. Recently, I decided that I wanted to get back to it and blog more about our home school endeavors and my personal junk, so I was browsing through old posts.
I came across the post I made at the time of Ellie's diagnosis, and it stopped me cold. Not only did it bring up the emotion of that diagnosis, but it showed me how incredibly far we have come in such a short time. Ellie has made progress that was not expected, and we have chosen a path of healing that is exactly the OPPOSITE of what mainstream medicine recommends. I also appreciated the reminder that our favorite GI never fully bought into the 'she will out grow it' phrase. This phrase has been a personal pet peeve of mine since day one. 'At some point their intestines mature'....'They tend to no longer react'....blah ditty blah. Hooray for some children that at some point their intestines have healed, and they can eat. They, by 2 or 3 years of age, have been on an elemental formula that their body can thrive on long enough to see healing, and be able to begin eating food, following a strict method of introducing them one at a time. For those of our kiddos with a severe corn intolerance, we may not be so lucky.
For the sake of insight, and a glimpse into the beginning, here is a copy of this post:
Who Would Have Thought? June 21, 2010
Today I headed to the Pediatric GI specialist for Elianna's follow up appointment. Last week we received the good news that her blood tests came back negative for Celiac and for a whole gamut of allergies. I entered the office and jokingly told the doctor I was hoping I would show up and he would just tell me she had a rough first four months before her dairy protein diagnosis, and that all she needed was a good round of probiotics and would be good to go. He laughed. And then told me, 'yeah....no. We can fake throwing up but we cant fake diarrhea'. Darn.
We love this office. These doctors are incredibly on the ball and always have the latest information on anything random. Dr. Barad can spout random facts about anything such as 'well, yes, actually, Sub-Sahara Africa has the highest incidence of Celiac's in the world with 1 in every ?? having it'. I don't even remember the number he gave. So today I felt blessed to have such a knowledgeable doctor, but not so happy at the diagnosis.
Who would have thought that I would be told my 10 month old daughter can not have ANY protein. None. This apparently occurs in over 50% of infants diagnosed with her dairy and soy processing disorder. What she has is relatively new and is called FPIES (referred to as F-Pies), and stands for Food Protein Induced Enterocolitis Syndrome.
The bad news first:
No protein for now, and most likely at the earliest will be 18 months of age. The treatment is to get nutrition from an extensively hydrolyzed casein formula, which is what we are already spending between approximately $500 and $700 a month on to feed her. She can be on this formula until she is 2 if she has to be, according to the pediatric nutritionist. She may not have grains, legumes or meat. Did you know that rice has protein? There is also a list of highly allergic foods that the lucky 3% of kids with this diagnosis get to deal with. Top of the list are rice, sweet potatoes, and bananas. Geesh. The top things we are supposed to feed when beginning solids! No wonder we are having problems.
The good news last:
Perhaps with this diagnosis we will be able to get the insurance company to say the formula is actually medically necessary and they will pay for at least a portion of it. Food will be easy since she is on a restricted diet of formula and fruits for the next six weeks. We are to start with apricots, plums, and apples, the three least allergy prone foods for all humans anywhere. (again, who would have thought?). The majority of these kids outgrow this syndrome between 2 and 3 years of age. GREAT NEWS. (however there is a long extensive process for introducing these solids successfully).
What now:
We have a referral in to the allergist. Our GI doctor said he is comfortably the initial diagnosis and saying that she is on the FPIES spectrum, but wants the allergist to examine her and weigh in as well. I have been instructed to purchased fresh, organic fruit that is in season and made food for her. And now I begin the process of trying to learn what kitchen items can retain allergens (anyone know about cast iron pots and pans?).
I think that is all. Though my brain is pretty fried from rethinking and processing. I am so happy we have a diagnosis finally. Whew. I need a glass of wine!
I will follow up later with another post explaining how this is diagnosed and how it falls in the allergy category. Time for dinner.
I came across the post I made at the time of Ellie's diagnosis, and it stopped me cold. Not only did it bring up the emotion of that diagnosis, but it showed me how incredibly far we have come in such a short time. Ellie has made progress that was not expected, and we have chosen a path of healing that is exactly the OPPOSITE of what mainstream medicine recommends. I also appreciated the reminder that our favorite GI never fully bought into the 'she will out grow it' phrase. This phrase has been a personal pet peeve of mine since day one. 'At some point their intestines mature'....'They tend to no longer react'....blah ditty blah. Hooray for some children that at some point their intestines have healed, and they can eat. They, by 2 or 3 years of age, have been on an elemental formula that their body can thrive on long enough to see healing, and be able to begin eating food, following a strict method of introducing them one at a time. For those of our kiddos with a severe corn intolerance, we may not be so lucky.
For the sake of insight, and a glimpse into the beginning, here is a copy of this post:
Who Would Have Thought? June 21, 2010
Today I headed to the Pediatric GI specialist for Elianna's follow up appointment. Last week we received the good news that her blood tests came back negative for Celiac and for a whole gamut of allergies. I entered the office and jokingly told the doctor I was hoping I would show up and he would just tell me she had a rough first four months before her dairy protein diagnosis, and that all she needed was a good round of probiotics and would be good to go. He laughed. And then told me, 'yeah....no. We can fake throwing up but we cant fake diarrhea'. Darn.
We love this office. These doctors are incredibly on the ball and always have the latest information on anything random. Dr. Barad can spout random facts about anything such as 'well, yes, actually, Sub-Sahara Africa has the highest incidence of Celiac's in the world with 1 in every ?? having it'. I don't even remember the number he gave. So today I felt blessed to have such a knowledgeable doctor, but not so happy at the diagnosis.
Who would have thought that I would be told my 10 month old daughter can not have ANY protein. None. This apparently occurs in over 50% of infants diagnosed with her dairy and soy processing disorder. What she has is relatively new and is called FPIES (referred to as F-Pies), and stands for Food Protein Induced Enterocolitis Syndrome.
The bad news first:
No protein for now, and most likely at the earliest will be 18 months of age. The treatment is to get nutrition from an extensively hydrolyzed casein formula, which is what we are already spending between approximately $500 and $700 a month on to feed her. She can be on this formula until she is 2 if she has to be, according to the pediatric nutritionist. She may not have grains, legumes or meat. Did you know that rice has protein? There is also a list of highly allergic foods that the lucky 3% of kids with this diagnosis get to deal with. Top of the list are rice, sweet potatoes, and bananas. Geesh. The top things we are supposed to feed when beginning solids! No wonder we are having problems.
The good news last:
Perhaps with this diagnosis we will be able to get the insurance company to say the formula is actually medically necessary and they will pay for at least a portion of it. Food will be easy since she is on a restricted diet of formula and fruits for the next six weeks. We are to start with apricots, plums, and apples, the three least allergy prone foods for all humans anywhere. (again, who would have thought?). The majority of these kids outgrow this syndrome between 2 and 3 years of age. GREAT NEWS. (however there is a long extensive process for introducing these solids successfully).
What now:
We have a referral in to the allergist. Our GI doctor said he is comfortably the initial diagnosis and saying that she is on the FPIES spectrum, but wants the allergist to examine her and weigh in as well. I have been instructed to purchased fresh, organic fruit that is in season and made food for her. And now I begin the process of trying to learn what kitchen items can retain allergens (anyone know about cast iron pots and pans?).
I think that is all. Though my brain is pretty fried from rethinking and processing. I am so happy we have a diagnosis finally. Whew. I need a glass of wine!
I will follow up later with another post explaining how this is diagnosed and how it falls in the allergy category. Time for dinner.
Wednesday, May 18, 2011
It's Certainly A SUPER Market!
Over the last 6 months or so I have begun to take note of some most interesting items on the shelf at the supermarket. I finally decided it would be fun to share them with all of you. Perhaps you have already noticed them, or perhaps not. Perhaps you buy them (sorry). Another FPIES mama recently shared the picture of an apple 'juice' she found at the store, because she knew how much I would enjoy it. I can't seem to get it to post here, but it was a lovely green box with apple, that says "Apple Artificially Flavored Drink. No Juice." The question is: what then is it exactly?
Let us start with this lovely Rice 'cheese' pictured at the left. Galaxy Nutritional Foods has figured out how to make American flavored processed cheese food alternatives out of rice! It is soy free, cholesterol free, lactose free....but when I turned over the back, guess what? It has diary casein in it. Darn. That's ok. The rice is not FPIES friendly, anyway.
Next up we have something that I found while sea salt shopping.
Yup. That's right. The 'no salt' for your low sodium needs. There were no ingredients listed.
Contrary to popular belief, fructose on the shelf is not derived from fruit. It is a nutritious sweetener highly processed from high fructose corn syrup. What? You didn't think you could process high fructose corn syrup? You can! Read the sign! This lovely little sign was courtesy of the bulk bins at Winco (in case you are looking to purchase some).
Ahhh....Xantham Gum. An FPIES favorite. From our local health food store. Gluten free, wheat free, and an 'authentic food'! For the preservative need in you. Feel free to add this soy or corn based ingredient to your baking goods to give it some fluff in the name of 'gluten free'. (Not FPIES safe)
This one made me stop and laugh. Do not forget to pick up your imported octopus, in a can, with SOY and olive oil. Uh......
I had to include this most frustrating picture. It is the back of a granola bag. The ingredients look great, right? For our corn free home I was thinking it was a good choice. Until I read the black italic writing. Packaged in corn. DOH! Did I mention they are replacing BPA products with a corn based plastic? And the 'new' Styrofoam comes from corn? That meat packaging you see in the store? Agh!
Last, but certainly not least, I had to include one of my most favorite items now featured on the grocery shelf as well as at the local farmer's markets. Vegetarian chickens. That's right. I am not really sure who is creating the need to produce these. It is full of confusion for me. The vegetarian that wants bug and worm free eggs? The consumer that doesn't know chickens are designed to eat bugs and worms? Those hoping for the ethical treatment of animals, not realizing to keep a chicken from eating a bug they have to be fully caged and not on the ground? I am so confused on this one!
I used to get frustrated because I wanted to be able to shop the market and throw whatever I wanted to in my basket. Stupid FPIES, I would think. I can no longer shop without thinking. Now I know that our new normal has opened up a more healthy realm for the entire family, and that if I really look, most things in life can give you a good laugh.
Below are a few of my favorites. Warning: sarcasm alert
Let us start with this lovely Rice 'cheese' pictured at the left. Galaxy Nutritional Foods has figured out how to make American flavored processed cheese food alternatives out of rice! It is soy free, cholesterol free, lactose free....but when I turned over the back, guess what? It has diary casein in it. Darn. That's ok. The rice is not FPIES friendly, anyway.
Next up we have something that I found while sea salt shopping.
Yup. That's right. The 'no salt' for your low sodium needs. There were no ingredients listed.
Contrary to popular belief, fructose on the shelf is not derived from fruit. It is a nutritious sweetener highly processed from high fructose corn syrup. What? You didn't think you could process high fructose corn syrup? You can! Read the sign! This lovely little sign was courtesy of the bulk bins at Winco (in case you are looking to purchase some).
Ahhh....Xantham Gum. An FPIES favorite. From our local health food store. Gluten free, wheat free, and an 'authentic food'! For the preservative need in you. Feel free to add this soy or corn based ingredient to your baking goods to give it some fluff in the name of 'gluten free'. (Not FPIES safe)
This one made me stop and laugh. Do not forget to pick up your imported octopus, in a can, with SOY and olive oil. Uh......
I had to include this most frustrating picture. It is the back of a granola bag. The ingredients look great, right? For our corn free home I was thinking it was a good choice. Until I read the black italic writing. Packaged in corn. DOH! Did I mention they are replacing BPA products with a corn based plastic? And the 'new' Styrofoam comes from corn? That meat packaging you see in the store? Agh!
Last, but certainly not least, I had to include one of my most favorite items now featured on the grocery shelf as well as at the local farmer's markets. Vegetarian chickens. That's right. I am not really sure who is creating the need to produce these. It is full of confusion for me. The vegetarian that wants bug and worm free eggs? The consumer that doesn't know chickens are designed to eat bugs and worms? Those hoping for the ethical treatment of animals, not realizing to keep a chicken from eating a bug they have to be fully caged and not on the ground? I am so confused on this one!
I used to get frustrated because I wanted to be able to shop the market and throw whatever I wanted to in my basket. Stupid FPIES, I would think. I can no longer shop without thinking. Now I know that our new normal has opened up a more healthy realm for the entire family, and that if I really look, most things in life can give you a good laugh.
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