Welcome to my blog!

This blog is a journal of our struggles with food allergies and eosinophilic gastrointestinal diseases (EGIDs). ("DD" stands for "dear daughter", so whenever you see it in the blog it is referring to my daughter and our personal experience.) My hope is for this blog to be a source of information and support to others who might be trying to investigate, diagnose, treat, or live with, food allergies and EGIDs. Feel free to leave comments with suggestions or requests of what you would like to see on this blog. This is a work in progress. :)




Month 9

June 2008

DD continues to react to more and more foods in my diet... we also discovered that the "hypoallergenic" probiotic from Kirkman Labs that DD had been taking could have traces of corn in it, so we've stopped those.

This month, I became really sick. My body started rejecting foods worse than DD's. Everything I ate would just go straight through me, completely undigested. After a week of this, I went to see a new doctor, because I was afraid that I would end up in the hospital from dehydration or malnutrition. She agreed to order an elemental formula for me to drink for a while until we could figure out what was going on. They also did bloodwork and a stool culture, all of which came back normal- except that my Eos level in my blood was elevated, suggesting an allergic reaction.

After another week, I stopped taking all my supplements and my symptoms started decreasing. I think that it might have been from my digestive enzymes, which I had been taking for over a month with no problem. But the only logical explanation is that my body became sensitized to them and started treating them as an allergen. Big bummer, since they are meant to help digest food and lessen allergic reactions.

Meanwhile, I got the elemental formula- it was Vivonex RTF, an adult complete elemental formula, used for tube feeding or severe gastrointestinal impairment or food allergies. I opened a can, took a sip and gagged. It was perhaps the most disgusting thing I've even tasted in my life... but, it was worth a try to see if we could get my & DD's symptoms under control.

(Another reason that I wanted to try the elemental formula is this- many doctors had suggested that I just stop breastfeeding DD and put her on formula. Not only do I think that's just a stupid idea overall, I thought there had to be a better way. If she can drink an elemental formula and relieve her allergy symptoms, then why can't I drink the formula instead? That way, we both get a break from our allergens, and DD still gets all the health benefits of my breastmilk.) Oh- and the premise behind elemental formula is that it contains NO protein (which is what most people are allergic to)- it's all been super processed and broken down into amino-acids, so is supposed to be hypoallergenic.

Turns out, DD is MUCH more sensitive to corn than I ever thought. I drank the Vivonex for one day, and by the next morning her face was flared up and she was itching like mad. :( So much for that idea. I spoke to the doctor about trying a different formula- I decided on Neocate E028 Splash. It does contain maltodextrin (which is often derived from corn), but it was one of the few formulas that doesn't contain corn syrup solids- which some suggest might trigger a reaction, even in an elemental formula. Hopefully it won't take another 3 weeks to get processed through the insurance company and pharmacy...

1 comment:

Jill said...

I am finding your story fascinating. I have a baby with either allergic colitis or protein intolerance and someone directed me here b/c I too was tempted to drink Neocate to finally get to a "baseline," i.e. no mucous or blood in poops. I have tried taking almost everything out of my diet to no avail. I am currently rotating rare foods just so I don't turn into a skeleton!! I have found out that sometimes there is a general protein intolerance, which would mean an intolerance to my protein, as well, but I just can't believe that stopping breastfeeding is the solution! I am going to keep reading to see how the Neocate trial went...I am also going to ask for a "patch" allegy testing for both my baby and me. I have been reading how that is beneficial to diagnose delayed non-IgE responses to food. My baby already has an IgE to milk, but showed negative on her blood test for others. But, as you know, the blood test is fairly unreliable...