Thank you for your inquiry.
I am afraid that I can be of little help to you in this regard. The manifestations you described are quite unusual, and I am not aware of this type of reaction previously described in the literature. Certainly they do not suggest an IgE-mediated reaction, and this has been confirmed by your evaluation to date. The symptoms also are not consistent with gluten enteropathy, but if you have not assessed her for gluten enteropathy, I suggest doing so. A visit to a gastroenterologist, if this has not been done, might also be helpful.
Finally, when we have seen patients with unusual reactions attributed to food, visual observation after oral challenge has been of help. This is especially true if a visible or measurable symptom has been described. Although in your case there is no visual manifestation, but since she complains of shortness of breath, pre and post pulmonary function studies might be of help.
In summary, I am not aware of any syndrome that fits the symptoms expressed by your patient, and can think of no definitive way to evaluate her, but oral challenge with pulmonary function testing, and assessment for gluten enteropathy if it has not been done, and perhaps a visit to a gastroenterologist, are all reasonable things to consider.
Thank you again for your inquiry and we hope this response is helpful to you.
Phil Lieberman, M.D.