Meeting Dr. Gonsalves

Adam/I met with the GI specialist on EGID at Northwestern yesterday.  The news wasn't much different that what we found out previously; and they did change out my medicines again for treatment.  Essentially, my case of EoG is very rare and very severe, which is why the steroids without the formula diet was not working.  The c-diff and antibiotic treatment is known to distress the GI tract even further, so it's complicating the case.  The symptoms are unclear as to what issue they are associated with at this point.  My medications were changed again, and our next appointment is in 4 weeks to meet with the specialist on my progress and meet with the dietician.

The specialist does not believe I did anything on 8/31 (like eating pizza) that triggered this, but it was likely something building up over time.  She agrees the allergy testing is good, but even if I do show signs of allergies, it may not be the cause of the issues.  She didn't want to get my hopes up (they weren't), and said that it may very likely it is not a food allergen at all.  There is a chance it could be due to post-partum issues or an autoimmune response or diet; but only time and trial/error will tell.  At the end of the diet, we'll know what I need to avoid, but there are still no assurances that a relapse won't happen again, especially as it could be a build up.  The specialist does say there is usually a spike in the eosinophils in the blood and GI tract, so as long as we test, test, test, we hopefully will catch it early on.  We hope to find a linear correlation between diet/eosinophils, but in a lot of cases, there isn't one.  The elemental diet and steroid treatments are the only proven method to get into remission, however, tapering the steroids also can cause relapse if this is an auto-immune response.  Everything is wait and see.

So, 6 weeks of steroids and formula, then a gradual introduction of foods (with endoscopies after each food group and blood labs to check my eosinophil counts weekly).  I'm hopeful by Thanksgiving, I'll be able to try something and be in remission.