My Daughter's Celiac Testing Was Negative...but Allergy Testing +
Posted 13 January 2012 - 06:02 AM
Still happy our household is gluten free now. My other kids and myself are feeling so much better despite the negative biopsies.
edited to to add...I meant to post this in the kids section...but oh well.
Posted 13 January 2012 - 07:28 AM
You really had a stroke of good luck to have caught some sensitivities through allergy testing. That didn't happen for my daughter and we had to go through elimination diet to determine what foods "trigger". We have also noticed an airborn trigger, late fall in the mid west ~ probably ragweed.
My advice is to keep a very detailed journal. Eosinophils, once activated, can stay active for 12 days. So a person is trying to remember back almost 2 weeks what they have been exposed to. Knowing that some cases have airborn "triggers" you have to write the air quality and locations you have been to.
Posted 13 January 2012 - 08:28 AM
I stopped dead in my tracks. I firmly informed him that SEMOLINA is NOT gluten free and his jaw dropped. He said he was going to research that immediately after I left. (I somehow doubt he did but let's give him the benefit of the doubt.)
My daughter chose not to attend that college for other reasons, and was embarrassed that I'd stopped to talk to the chef, but hey, she's still my baby!
Schools are trying to get on board with this 'gluten-free mumbo-jumbo' but few really have a clear understanding of it. Absolutely be your child's advocate! If the school says they have gluten-free, nut-free, soy-free, etc. ask them for a tour and ask to be permitted to look at the ingredients of their product, even observe them preparing food for a gluten free meal during their busy period (just because they offer gluten free ingredients doesn't mean it is prepared gluten free!).
If they refuse, go to the campus department that deals with special needs (each campus has its own title for this). Request that they work with you on creating a 504 for her college years (yes, even your college student be on a 504, as can grandparents in a nursing facility), and make sure that she is placed in a dorm that allows her to have her own food supply away from other residents (my other daughter has a problem with rmates 'stealing' her food because it is sooo good--good yes, cheap NO!
Kudos to you for being willing to stand up WITH her! (I realize I only addressed the gluten issue, but your daughter has enough reactions to foods that she really does need to have her own meals purchased/made by her. It is far to risky in the college cafe' in which ingredients, personnel, and cleanliness habits change almost instantly.)
Posted 13 January 2012 - 07:28 PM
I hadn't thought about a 504...I will have to look into that. I had a great talk with the college dietitian today. They are working diligently to come up with a database of what's in every food they offer in their cafeteria. So when a student comes in and has to stay away from certain things they can type that in and a list of safe foods will be provided. She said they have already listed over 3000 items ...so it's a work very much in progress...and hopes to be available soon. Next week she will meet with the dietitian and go over what she needs to steer clear of. I know the dietitian said that if it becomes apparent that she cannot safely eat at the college cafeteria they'll make arrangements for her to get off the meal plan and into an apartment.
Now I really have to think about this...you are not the first person to say she may not be safe no matter what eating in the cafeteria...and that we should push for her to make other arrangements right away.
Posted 14 January 2012 - 03:12 AM
Posted 15 January 2012 - 11:34 AM
I'm in the process of creating a binder for her of recipes and a list of safe foods. That way when she's on her own it'll be a good resource.
I'm so sad for her. It just seems like such a difficult task ahead of herself
It may happen that she will have to get off the cafeteria meal plan and make her own meals. You have to consider cross contamination--are they washing their pans or boiling a fresh pot of water before making the gluten free food? If you boil your gluten free pasta in the same water you just boiled wheat pasta... that's no good. If your daughter stops eating at the cafeteria, I would recommend that you and your daughter spend some time in the kitchen getting some basic recipes down that are easy and can be made on the go or frozen in containers to whip out. Many wonderful people have posted recipes on this web site, and I found a few others on Adventures of a Gluten Free Mom blog. Just go to the search window up above and type in "buckwheat pancakes" or whatever you are looking for--people have posted their favorite recipes. You might be sending her a lot of care packages!!
Posted 20 January 2012 - 01:02 PM
0 user(s) are reading this topic
0 members, 0 guests, 0 anonymous users