Clueless Clinicians, More Research Needed

http://www.nanaimobulletin.com/news/136743938.html

This story made me very sad. The food trials kids are put through are ridiculous. All they do is teach the kids food is bad. These doctors are not reading the research on how to change the way APC’s process antigens with microbes. This kind of thing is labeled as “alternative”. Could I be the only person in the world trying to heal my child’s EE with microbes after spending thousands of hours on Pubmed to figure out the causes and reversibility of loss of oral tolerance? If the child lost oral tolerance, who says time will fix it? No science to support these types of abrupt high dose food trials. They may identify foods a patient is not yet sensitized to. But they won’t reverse EoE. It’s also bad for children’s brains to repeatedly by put under for procedures. Seems like docs knew the kid had EoE so why torture him with NG tubes? This will only create oral aversions that costs time and money to fix later. Grrrrrr. Hugs to the family.

We really need a non-invasive marker for EoE status. Dr. Rothenberg has already taken out patents so that is looking good.

I think food trials are completely ridiculous. Could extremely slow immunotherapy be done with these patients? With microbial therapy at the same time to promote tolerance of the antigen? How about adding a mucosal adjuvant like CpG DNA or LPS? I wish I could go back to school and do this research. This COULD be done with animal models of EoE!

My suggestion for a clinical trial:
Create EoE mice by intraperitoneal injection with ovalbumin and nasal challenge.
Try ovalbumin oral immunotherapy with 4 groups of mice: non-infected, Trichuris muris infected,
Nippostrongylus brasiliensis infected, and Heligmosomoides polygyrus infected mice. See if it improves the EoE.

Another experiment: Infect the mice with the above 3 helminths and do the procedure to induce EoE. See if the infected mice do not develop EE or develop a milder form.

Another experiment: do like Dr. William Parker and use wild rats and lab rats. Try to induce EE. Also during the experiment compare microbes between wild and lab rats.

I think the folks at CCED could do these experiments. Perhaps the idea has not occurred to them. The reality is that EGID patients are experimenting with helminthic therapy already. With their doctor’s approval (and a rx for anti-helminthic drugs just in case). Only the geekiest of families are going to their docs and saying “lets try this, because nothing else has worked, and it has a very low likelihood of causing harm, compared to other EE treatments”.

Hoping for a better future for those of us suffering from EGID.

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