Tuesday, December 28, 2010

Still waiting for results but this is what we know......

It was another long day of researching and talking to doctors.  I was finally able to touch base with Dr. Brown this morning.  He is still waiting to get her disaccharide results back - apparently that has something to do with how her enzymes help digest sugars.  I don't know much about it but Dr. Brown said it could be a key aspect if the results are not normal.  So we sit and wait.  All other endoscopy and colonoscopy results came back normal (of course).  No inflammation and no eosinophals in her GI track.  Both of those are hard to believe because Dr. Brown said there was inflammation from her esophagus through her intestines so I'm not sure exactly why nothing showed up on the biopsies.  Also, on all of Allie's previous endoscopy's she has eosinophils in her esophagus - that is why Dr. Brown was thinking she had EE.  So now there are no eosinophils???  Doesn't make sense to me but what do I know?

I also spoke to our ENT doctor today, Dr. Edmonson.  He told me very directly that Allie is to consume NO CORN OR PRODUCTS OF CORN.  He reminded me that Allie's corn allergy is severe and at this point, all corn needs to be removed from her diet.  Interesting because her new Neocate formula is 53% corny syrup.  I have mixed information about this.  Neocate is saying it's safe because the corn syrup is so refined, however Dr. Edmonson said it's not safe.  I don't know who to believe.  I did hear from a couple other tubie mom's who have a child with a corn allergy and they use a similar formula and so far their children have been okay - so is Dr. Edmonson just being on the super safe side????  Our Dietician is out of the office until Monday so I will have to wait and talk to her then.

Dr. Edmonson also confirmed this afternoon that Allie's severe corn allergy has nothing to do with her elevated IgG and IgA levels.  So, this means something else is going on inside Allie's body.  Her IgG and IgA are antibodies and they are obviously high and fighting something inside her body.  So, Dr. Brown is assuming her body is fighting gluten.  Her endoscopy doesn't show she has Celiac disease however her blood work is supporting a possible Celiac diagnosis.  So, for now, they are assuming she is gluten sensitive.  Unfortunately, this means Allie now needs to remove all gluten from her diet.  Basically she needs the diet of a Celiac patient plus no corn - this is going to be fun :-)  We went to the grocery store this evening to get Allie some new food to eat.  We bought her a bunch of corn free products last week but unfortunately, most of those products contained gluten. So, we got her a couple new items along with some fresh organic fruit, gluten free Bisquick and gluten free pasta.  All I can say is, "expensive".  Of course Allie is worth every penny of it though!

In talking with Dr. Edmonson today, he confirmed that Allie has a Type IV Hypersensitivity Reaction to corn.  Here are two websites that provide a little information about this type of reaction:

Allie doesn't have any of the skin issues so all of her reactions are happening on her insides.  Dr. Edmonson confirmed today that he honestly doesn't know how this corn allergy is affecting Allie.  He said that her allergy is most definitely severe and that it most likely is causing damage to her insides, however he doesn't know the exact damage that is being done.  So, it's absolutely necessary to get her off all corn at this point.  So, we are removing corn from Allie's diet and then it's just a waiting game to see if anything changes with her health.

Hopefully Allie's disaccharide results are in tomorrow so we can proceed with what the next step needs to be.  Thanks again for all of your prayers and kind words - we really appreciate it!!

1 comment:

  1. Let me know if you want food brand recommendations...we've tried everything and spent TONS of money finding the better tasting foods. And yes, our grocery bill tripled when I was diagnosed...