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."
Thursday, December 16, 2010
New Guidelines for Diagnosis and Management of Food Allergy in the United States
The full report is 84 pages long. The first glance I took of it, of course I skipped through to where it mentions FPIES. Yes, that is right- it gives an entire section for FPIES. It is a very real diagnosis and having it mentioned here in the new guidelines for food allergies is a big step for the future of these children affected by it. But the report is, of course, not limited to FPIES. I have begun to read through it and am impressed with the information it provides, updated information that is needed as this country's food allergies are on the rise daily. In fact, that is one of the reasons they developed the new guidelines.
The first thing I notice is in Section 2 (pg7): Definitions "A food allergy is defined as an adverse health effect arising from a specific immune response that occurs reproducibly on exposure to a given food." This is updated terminology to address both IgE and Non-IgE food allergies. Typical immediate onset allergies are IgE, that is IgE-mediated mechanisms are involved. Non-IgE are delayed and thought to typically involve cellular mechanisms. "The terms Allergy and Allergic Disease are broadly encompassing and include clinical conditions associated with altered immunologic reactivity that may be either IgE mediated or non-IgE mediated".
It goes on to describe terms such as Food Allergen, this addresses foods or specific ingredients and components in a food (typically proteins). It also addresses cross-reactivity definition and significance in food allergy. Food oils are considered low allergenicity if virtually all food proteins have been removed in processing (note low, not non-allergenicity).
I am pleased to see that there is a lot of language in this report to describe diagnosing food allergy- not limited to serum levels of IgE, but in response to tried-and-true elimination and challenge of the foods. Things to be considered is the level of reaction, the quality of life - the balance of benefit and harm..."identification and avoidance of foods responsible for food-induced allergic reactions improve quality of life and potentially prevent life-threatening reactions and disorders. With the appropriate evaluation, there is a low risk of erroneously diagnosing someone as food allergic and adversely affecting his or her nutritional well-being and social interactions".
This is an important moving forward (and over due) step in the world of Food Allergy. And as not only a mom of an FPIES child, but a Dietetic professional as well, this is of critical importance -- to properly recognize, diagnosis and treat food allergy's not only so that diets are not over restrictive but also, on the other end of the spectrum, so that proper identification to symptoms can be made, and treated with removal of the offending food(s). This is important because as of now, allergy's are only considered "true" if they produce an IgE and immediate immunological response. These guidelines are helping to redefine, and hopefully reshape how adverse reactions to foods are viewed, and thus diagnosed and treated. It is very important to be able to treat so many growing number of protein intolerant infants and toddlers, to have recognition that not all food allergies are IgE response, that Non-IgE food allergy's exist, are prevalent and a significant adverse health effect on children suffering from them.
Food Protein Induced Enterocolitis (FPIES) and Food Protein induced allergic proctocolitis (AP) are initially described on the bottom of page 8.
A table (in section 4, pg 20) for "Diagnosis of food allergy: when should a food allergy be suspected?" and includes delayed GI reactions as well as other cutaneous, ocular, and respiratory delayed symptoms (as part of the cascade of symptoms)- it should be noted that the expert panel notes that food allergy rarely causes isolated respiratory symptoms such as asthma and allergic rhinitis.
Included in section 4 (page 22) is an outline for Differential for Diagnosis of Food Allergy, which include addressing adverse reactions to foods that are not allergenic in origin.
A few pages later (page 27) is the discussion on Diagnosis of non-IgE-mediated immunologic adverse reactions to food. This is where FPIES and AP are described as Guideline for diagnosis, rationale and the balance of benefit and harms. It is a good synopsis of the research on FPIES thus far. I am happy to see it has it's place here and described so well for the clinicians. There are additional research articles on FPIES, and additional research is being done to further understand this diagnosis, and ultimately (hopefully) find better treatment options to provide to the families struggling with a severe protein intolerant child.
I am still reading through the rest of the report, it covers a lot of new language, encompasses newer research, clarifies IgE reactions. In general, it is well written report and hopeful that with FPIES and AP being included; it will begin to be in the differential diagnosis for more kids presenting to the doctors offices with feeding intolerance's.