Amazing levels, amazing visit to the Metabolic Clinic and cheeses

We have the results from the recent draw. Both girls have perfect levels!!! Did I mention, that dinner the night before the blood draw included lots of Parmeseano Regiano tomatoes and garbanzo beans?  Yay....I am so, so very excited that the levels came back perfect.

We had our metabolic appointment on Tuesday and I had to pick-up the girls early. Neither was excited about the appointment out of fear that there would be a pain involved... To mix things up a little bit and make it fun, we did not drive up to OHSU today, but took the aerial tram.  Both were excited to ride the tram...oh, and if you do not live in Portland and wonder what I am talking about here is the link to the aerial tram http://www.portlandtram.org/.  The tram connects the upper and lower part of OHSU.  It is quite amazing, and on a clear day you can see Mt. Hood :)

Our visits was great as usual. It did however stand out, from previous visits because this time we got the green light to expand on cheeses for the girls. Our new dietitian was very prepared and brought along the abstract of a British research study concluding which cheeses the British deem as safe.  This fall  adding Gruyezer, Emmenthaler, and Grana Padano Parmesan to the Parmesiano Regiano.Yay!!! FYI - Jarlsberg is also on the list, but I however am not a great fan.... Kaesspaetzle (= home made egg noodles baked with Emmenthaler & Gruyezer topped with browned onions) will meet new friends :)

Jokes aside - I am so thrilled to finally get the official green light on these cheeses from our Metabolic Clinic.  Europeans have long advocated for Galactosemics to eat aged cheeses due to the calcium.  And I do admit, that both kids have eaten Emmenthaler, as well as Gruyezer before just in small amounts.  I limited the amounts as I was not certain how much would beOK....

What about you?  Do you allow, or eat aged cheeses?  Will you allow it?  Do you like it? Does it worry you?  I would love to hear from you!!!

Great news from Europe...

A few months ago I posted the great news received from the Austrian group that one of its adult Galactosemics was pregnant with her first child. The baby was born in November and both he as well as his mom are doing great. His mom is nursing him :)

Other great news comes from

- France, a Galactosemia Mom gave birth she is also nursing her baby
- Great Britain, a woman who is a Galactosemia is pregnant

I am so excited to share this...

New feature on blog - Recall information

I just added a new feature to the blog and am now listing food recalls as they become available. The information is on the left hand side of the blog. Please let me know if this is helpful for you...

FYI - the information is added as it becomes available, and is for recalls in the United States only. Please also not that recalls prior to November 1st, 2008 are not mentioned. For an all inclusive list go to http://www.foodallergy.org/alerts.html

Diet of CG in Germany

While in Germany we met with a couple of families in Berlin who both have kids with CG. I understand that families are urged to include aged cheeses in their diet thus eliminating the need to supplement calcium. I saw the list of cheeses which was ok'd after new testing and it includes cheeses which have been aged for 6 weeks or longer. Interesting, isn't it?

For us, we allow our oldest to eat Parmesan Reggiano. This we only allow at home. She has been eating Parmesano Reggiano on a regular basis now for almost 6 months and her levels did not increase. Note also, that we do not adjust our diet in any way before the draw. I am very interested however to see whether it increases her calcium level in any way...