While I appreciate how frustrating it is for you... I must reinforce that I'm not surprised by the responses.

Wheat allergy needs to be treated the same as a gluten allergy or celiac. That has been stated in several abstracts that I've seen.

Also, allergies are not truly understood even by allergists. There is SO much room for learning in this area that it boggles the mind. Testing is not accurate and results can often not be accountable.

We saw the abstract, not long ago, that shows gluten does get through breastmilk... they did admit to that occurring... just not to the degree where there would be visible damage... This may have more to do with the time span of ingestion also... but there's really no way of knowing at this point.

This has been backed up just by watching growth charts for celiac kids. These charts show that, at approximately the time of the introduction of solids (usually grain/gluten based), the growth process takes a nosedive. It is one of the indicators of a celiac child. This occurs even in a child listed ftt on breastmilk alone. (My son is a prime example.)

It is also one of the indicators of an allergy or severe sensitivity.

Sensitivities do not make any testing charts because there are no tests for them. Many docs in the medical allergy community will admit that life can be severely, adversely affected by sensitivities... but there are no tools to work with, so their hands are tied... There is nothing they can do re: sensitivity. There is no data that they can point at and use to advise a patient about diet alterations. That is how dr.s make their diagnoses... using testing data. So, no testing... no data... no opinion... otherwise they might get sued for being 'misleading' to patients and suffer malpractise suits.

So, while I completely sympathize with not getting agreeing opinions from different doctors, I feel like I must defend the doctors who have to work in an environment that pretty much tells them what they can or cannot say, based on test results. It must be very frustrating to want to help someone but not be able to say anything for fear of losing your license.

Lastly, I just want to say that I think it's very kind of you, on a global level, to want to get this for the world to have a better understanding of the mechanisms involved. I hope it goes quickly for you and your son doesn't suffer too much. I hope that some test results will show 'something' so that it's not all for naught.

Kind regards,
KimS