September 14, 2008

Too Confrontational?

My brother is a professional editor, and one of his comments was that my site is a bit too confrontational towards the allergy/immunology establishment। I do have strong feelings about this, but my intention is to help and persuade the establishment to do better, not to fight with them. I hate fighting.

The failure of my childhood doctors to diagnose my non-IgE allergies held me back. I had a low energy level and other uncomfortable symptoms because I didn't know I had food allergies. Imagine what I, and others with undiagnosed non-IgE allergies, could have accomplished. Some are much worse off than I was. The establishment seems to focus its energy on trying to change the meaning of the word "allergy" (please see Terminology of Allergies for a discussion of this) instead of using information about non-IgE allergies to help patients. Thousands of people continue to suffer, some with debilitating symptoms, because doctors are either not informed or not allowed to use this information.

My primary care doctor and my allergist are both wonderful smart, open people who are aware of non-IgE allergies and do as much as they can to help patients with them, but are constrained by the establishment standard of pretending they don't exist. There are blood tests for non-IgE allergies, but mainstream doctors often don't use them either because their boss won't let them, or because they're afraid it will make them look bad to the AMA (please see Introduction for a description of a comparable situation).

I've been learning about allergies for several years. In the early 2000's I learned about Irritable Bowel Syndrome (IBS) on a support group, and saw cases in which a patient's IBS-D or IBS-cyclic symptoms cleared up after they learned what foods they were allergic to and changed their diet. In 2004 I worked with a company, Signet Diagnostics, that has a blood test for non-IgE food allergies, and I learned more from this experience. If you're interested, here is their link In their studies non-IgE allergies were also linked to frequent migraines.

The failure of the medical establishment to accept this information has far-reaching consequences. Non-IgE food allergies can cause symptoms of IBS-D or IBS-cyclic, and when I was learning about this I saw some horrifying stories. People who couldn't leave the house because of their IBS, accidents on dates or business trips, marriages ending because the spouse couldn't deal with the symptoms. And the frequent migraines, which are very debilitating. Surely some, maybe most, of these patients could clear their symptoms simply by changing their diet. How can the medical establishment continue to let people suffer like this? Why doesn't it accept and use information that has been around for decades? So you see why I feel a bit confrontational. :-)

As patients, we can insist that our doctors use this information. It's out there on the web and in books, and we can bring it to them. We can challenge confusing terms like "non-allergic ________" and insist our doctors make themselves clear. We need to push the establishment on this, because they are not moving forward on their own.

Thank you,
Julia Baresch
September 2008

Reference: Food Allergies and Food Intolerance: The Complete Guide to their Identification and Treatment by Jonathan Brostoff, MD and Linda Gamlin, 2000.