Have you ever had an instinct? An instinct that begins as a gnawing...Then grows into a raging burn; a burning instinct that something is wrong...
Your baby continues to get sick from the very foods he is supposed to thrive on. I did. I am a mom of a little boy just diagnosed with FPIES.
And that burning feeling now? Extinguished. My instincts? Stronger than ever. Guiding me, with my faith, as we navigate through the murky waters of our new world created by something called FPIES.
"Faith is not about everything turning out OK; Faith is about being OK no matter how things turn out."
Monday, September 27, 2010
Janice Joneja Vickerstaff, PhD, RD is an inspiration for me. I had the privilege of hearing her speak at a Nutritional Peds conference a few years ago, her discussion on allergy’s intrigued me…and actually inspired me to get my then 6yr.old tested for allergies since he had such bad eczema and asthma and this is when we found out he indeed had an uncontrolled low IgE egg allergy. I learned so much from the elimination diet and having to understand allergy at a 1st grade level so I could explain it to him- so he understood why he could not have eggs (because he also has equivicol (neither negative or positive IgE numbers to milk and wheat- hence the elimination diet). I bought one of her books on “Dealing with Food Allergies in Babies and Children” right away, and hungry for more information, I also bought another one of her Allergy books. I have also since bought Digestion, Diet, and Disease to learn more about gut health from her perspective (to learn more about FPIES and my own IBS). I find her books very easy to read and follow, and full of valid medical information; so have utilized it as a resource time and again.
I wanted to share a bit from her prelude first as she shares her story (as she did at the conference as well). She had her PhD in Immunology and was working in Immunology and in fact trained under the man who discovered the RAST blood testing for IgE allergies. And yet, when in the 1970’s she had a son, she became helpless when he started having many allergies and developed the side affects such as eczema, asthma, migraines, and even anaphalatic reactions that we not recognized at the time to be from food. She writes, “in those days, anaphylaxis was considered a medical emergency but the underlying cause- food allergy- was not part of the medical lexicon”. She goes on to say, Doctors were convinced his symptoms were from stress in the family and he needed a “parentectomy”. At 13yrs.old her son went on a vegan diet because he associated himself that meats and milk were making him “feel sick” (found out later he was indeed allergic to beef and pork). Still his doctors denied the existence of food allergy. She goes on to say she felt so powerless- being so knowledgeable and still unable to help her son, or to get the medical community to hear of her connections. It was in the 1990’s when she got her Registered Dietitian that she began managing food allergy in the clinical setting and has been doing so since with her own allergy clinic in Canada.
I called her clinic and inquired about FPIES research and if anything further was understood since the latest research article (she has a section on it in her book that pretty much sums up the articles- which she notes in her references and where many of my initial research stemmed from). She answered the phone herself and took the time to discuss with me. She explained that even with FPIES- it is all about food trials and doing it in small-small incremental doses would be the best/only way to know. She did advise that to develop oral tolerance- once you start seeing first signs of symptoms develop to go back to the dosage that was tolerated and stay there before trying to increase again. This is based on the T cell response of protection vs. allergy vs. oral tolerance and makes SO much sense. Although we do know that gets very tricky with FPIES when these kiddo’s react to even the smallest introduction of foods and even crumbs!
I’d like to explain more, from my understanding of her books. I will be using her words for much of it but not always directly quoting all of it- I merely want to provide an overview/synopsis/outline of the pertinent information to this “type” of allergy. This is just me, thinking out loud, so follow me if you are interested in my thought processes...
“Reasons that one child’s body responds to food by developing distressing symptoms and another uses the same food for comfort and nurture may be found in several factors”.
1. Child’s inherited genetic make up.
2. Circumstances within first food encounter
3. Microorganisms that live in child’s GI tract
4. Medications take by mouth, or exposed to (such as mothers milk)
5. Other factors research is only beginning to understand.
“Food sensitivity is unlike any other disease entity….any food is capable of triggering an allergic reaction to a child who has been sensitized to it, or lacks the systems required to process it adequately when it enters the body”.
What is the mechanism for food allergy? And how could this relate to FPIES?
When an allergen enters the body of a person at risk for allergy, an extremely complex series of events “set in motion that will finally result in the release of chemical (called inflammatory mediators) that act on body tissue to cause the symptoms of allergy. All immunological processes involve the various white blood cells (leukocytes), and different type of chemicals they produce”.
First step: the body recognizes the invading antigen. “An antigen is a protein within the cells of any living material that enters the body. When an antigen causes an immune response, it is an allergen. When the antigen enters the body, the white blood cells (lymphocytes) are activated. Lymphocytes are the first cells of the immune system that recognize and respond to anything foreign entering the body (sentinels of the immune system)”. There are two types of Lymphocytes in the blood: Tcells and Bcells. Tcells are the ultimate gatekeepers and controllers of the immune system. “Th (helper T cells) are responsible for identifying foreign materials that enter the body. Th cells initiate and direct the subsequent activities of the immune system if foreign material is deemed a threat…. T Cells exert control by means of messenger chemicals, cytokines”.
The response to cytokines is Th1 or Th2 and this response controls the way the body reacts. “When a pathogen (disease causing microorganism- virus, bacteria, other foreign material) enters, the immune system protects the body by a Th1 response (IgG). Cytokines are produced and stimulate the formation of antibodies of the IgG class which destroy the invading microorganisms by means of the complement cascade…symptoms such as fever, aching muscles, fatigue, malaise (much like the flu) are the result of the body’s response to cytokines and other inflammatory mediators produced during this battle between the immune system and foreign invader”. “The complement cascade is a group of over 20enzymatic proteins in the blood that act together in response to antigen and antibody to destroy foreign cells by splitting them apart (lysis); this process releases various chemical byproducts that act on opsonin’s, chemotoxins, and anaphlatoxins to help destroy a threat to the body and results in inflammation in various tissues.”
So, if FPIES is an IgG response, it is the Th1 response that is activated. It sees the food as a foreign substance – in the same way it would see and attack a virus or bacteria.
Th1 response protects the body from disease, and the IgG antibodies are responsible for the ultimate destruction of the invader. The Th2 response results in allergy, IgE antibody.
So, if Th1 is the first line of defense against IgE, FPIES is an overreactive Th1?
Some evidence that allergy is inherited… “the characteristic inherited is the potential to respond with a Th2 response when harmless foreign materials enter the body…. Some suggest Th2 is more primitive response than Th1 and as baby matures, the potential for immune system to respond with Th2 is gradually diminished. This decline, together with the maturation of the digestive tract (that provides a barrier between food molecules and immune cells) would explain why children outgrow their allergies”.
What is Oral Tolerance? “Oral tolerance is a term to indicate that although the immune system of the digestive tract can recognize that all the material we consume as food is completely foreign to our bodies, a tolerizing event has occurred that has taught the T cells that the foreign material is harmless and can safely enter the body”.
Something is askew in the FPIES child that the T cells perceive this as a harmful substance; they are taught to remember that it was originally perceived as a harmful substance; each subsequent ingestion has more T cell memory (army) to fight this perceived invader.
All food is foreign to the body (upon first ingestions)….what is it that allows food to apparently evade the barriers of the immune system in a normal child vs. an FPIES child that food is perceived as invaders to the immune system? Is it an overactive Immune system? This would be an auto-immune disorder?
Immune System and Digestive Tract
The Immune system of the GI is different than other parts of the body, it is called the GALT- Gut Associated Lymphoid Tissue. “Processing of food through this system allows the uptake of nutrients through the digestive tract walls without triggering the protective response that would otherwise form a barrier to the foreign materials in food. At the same time- any virus or bacteria taken in through the digestive tract are effectively excluded by the GALT. We have a system that can- at the same time and in the same place- recognize and differentiate foreign materials that is safe (food) and foreign material that is a threat (microorganism, toxins….).”
So, is FPIES a breakdown in the GALT? A deficiency mechanism, or an over reactive one? My little man is rarely ever ill, he is only ill when reacting to a food- does that mean his defenses are down because they are attacking the food so it lets the virus in?
“But that isn’t the whole story, the GALT must also distinguish between invading microorganisms and other permanent residents of the large intestine- gut microflora”. And many moms have suspected/known their little one’s microflora is “off”. “Microorganisms in the large intestine defend the bowel from invasion by harmful microorganisms by competing with them for space and nutrients; also keeping surrounding tissue healthy by stimulating the GALT in a positive manner”.
Process of Tolerance:
“The process of oral tolerance involves the T cells and their “messenger chemicals” cytokines. T cells that first encounter the foreign food when it enters the very first time (breast milk or solid foods) are of the Th1 type (Th3 immunological protection). Food molecules are picked up by special cells in the infants digestive tract. The antigenic parts of the food (proteins) are then “presented” to the T cells where they couple of special receptor molecules on the T cell surface”.
“T cells with attached food molecules are then transported on the lymphatic system to the thymus gland. There, the regulatory T cells (Treg) stop any further action on the part of the Th1 cells when it is discovered that the “foreign molecules” pose no threat to the body. This process of inhibiting T cell action is carried out by cytokines especially TGFβ(Transforming Growth Factor-Beta) and possibly IL-10 (Interlukein 10).”
Is there a deficiency in the thymus gland production or in the cytokines (transforming growth factor, or IL-10) that inhibits this regulation to happen in the FPIES child?
“The ‘educated’ T cells are then transported in the blood circulatory system and back into the digestive tract GALT as “memory cells”. Is this where the reactions become full body? Eczema, itching, thrombocytosis, angioedema, etc. leading up to a trigger reaction, as the T cells make their way through the body and back to the GALT and now have memory cells to attack with future ingestion's (the delayed-“build” response some of us see)?
FPIES is a Th1 response- the body sees food proteins the same as disease causing microorganisms ; there is a skew in FPIES kids bodies T cell response- Th1 is OVER REACTIVE!
IgE allergy = B cell lymphocytes= Th2 response =produce IgE antibodies
Non IgE = T cell= over reactive and does not proceed to Th2 response (thus preventing IgE food allergy- actually protecting the body- as it does for viruses/bacteria).
FPIES is a skew/”mis-fire” of the Tcell action….the food proteins should be going through the Th1 as “foreign but safe” and to the Th2 responses and either producing antibodies (IgE) or continue on as safe (already passing Th1 gate keepers). But with FPIES, the food proteins go through the Th1 response and get picked up there as foreign and perceived threats; the immune response is not initiated because it is begun in the non-immune Th1 response- it is attacked before it gets to the Th2!
(I had a graph here but can't figure out how to insert it in)
-White blood cells aid the immune system in recognizing foreign proteins.
-T helper cells produce characteristic cytokines.
-Specific cytokines determine response – Th1 protection vs. Th2 Allergy vs. Th3 Oral tolerance
Food = white blood cells recognition =Lymphocyte = T cells= Th cells= cytokines= protection vs. allergy. FPIES is a disruption in the Th1/Th2 response.
Antibodies in food allergy
IgE= recognized typical food allergy response, but there are other antibodies in food sensitivity. IgG is being recognized in Celiac gluten sensitive individuals. IgG is also thought to be what FPIES response is related to, although isolating the specific levels with other factors has not been achieved for FPIES. IgG is not yet a reliable test for food allergy.
“IgG antibody can be found circulating in the blood of people who have no signs or history of adverse reaction to foods. In fact, some think that an increase in anti-food IgG in some cases may be indicative of successful resolution of IgE mediated allergy. IgG mediated allergy remains complicated because of the nature of the antibody and the immunological reactions associated with it”.
Present knowledge (IgG):
-4 classes: IgG1, IgG2, IgG3, IgG4
-IgG4 subclass high affinity for food antigens
-IgG4 may be associated with milk allergy, in particular milk protein B-lactoglobin in atopic dermatitis (eczema) in children.
-Some evidence that total (all 4 classes measured together) might represent some protection from IgE
(again showing that a good IgG response is actually protective for IgE allergy)
-Food allergy in infants frequently associated with increased gut permeability “leaky gut”
"Antigenic food molecules passing into circulation trigger production of anti-food IgG. Thus, in cases of IgE-mediated food allergy that results in inflammatory reactions within the GI tract causing non-intact digestive epithelium, it is logical to expect to find higher than normal levels of anti-food IgG. Some think that these anti-food IgG antibodies represent a protective mechanism, rather than a source of allergic pathway”.
Wow! So FPIES is actually the body protecting itself from developing IgE allergy- is this because of the leaky gut already present or is it causing the leaky gut?
Conditions that predispose to allergy:
1. Immaturity of Infants Immune System – Immune system elements are in place at birth but do not function at levels to provide adequate protection against all infection. Antibodies are a fraction of an adults and secretory IgA (sIgA) the first line of defense of mucous membranes is absent at birth. Babies can have impaired or delayed maturing of various functions including cytokine production.
2. Permeability of digestive tract “leaky gut” – Infants intestines are highly permeable particularly 6-12mo.(become mature by 3yrs) and can absorb large molecules of foods that trigger the Th2 response.
3. Breast feeding – “breast milk provides the ideal nutritional, immunological, and physiologic nourishment for all newborns. Components of human milk enhance the baby’s natural defense and promote maturation of the immune system”. There is data that indicates the breast milk of atopic (allergic)mothers differs immunologically from that of non-allergic mothers. Atopic mothers tend to have higher levels of the cytokines and chemokines associated with allergy in their breastmilk. In addition, they tend to have a lower level of cytokines known as transforming growth factor (TGF-B) that promotes tolerances of food components in the intestinal immune response.
This is the end of my "digestion" of Dealing with Food Allergies in Babies and Children" by Janice Vickerstaff Joneja, PhD, RD. I have gone back to her books time and again- pre-FPIES diagnosis for Little Man, pre-little man for my own knowledge of allergy nutrition and pre-little man when his older brother developed an IgE allergy. I always learn something new. I wanted to re-read the sections explaining the immune system and body response to food allergy/antigen - now with "FPIES eyes". I have been meaning to do this since Little Man's diagnosis. I now want to re-read sections of her other book "Digestion, Diet, Disease" to continue to learn about gut health and how it may correlate to Little Man's FPIES.
I know I can't "cure" him but I need to try and heal him. Little man is wanting food again, begging for food- his gut is healing from his recent reaction 2 weeks ago and his body is sending him the signals to find food to eat. He wants food, but what do I give him? What could be safe for him to eat, snack, chew, consume without causing pain? I want to give him something SO badly when he gets like this....it goes against every grain of my being to not give him something, I cry inside and smile on the outside....and try to stay out of the kitchen....