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Member Since 18 Dec 2007
Offline Last Active Nov 28 2012 02:51 PM

Posts I've Made

In Topic: My Daughter's Celiac Testing Was Negative...but Allergy Testing +

20 January 2012 - 01:02 PM

The dietitian sent me a message after reading up on EE that she doesn't think that my daughter will be safe eating in the cafeteria at the present time. :( I suspected it but it's hard. Only thing available as far as apartments on campus is a room available in a 3 or 4 bedroom apartment with upper classmen. Even that I would think would be difficult because she would have to use only her stuff in the kitchen and make sure nobody else does...and living in a kitchen that isn't allergy friendly would be hard. I might be looking at setting her up in an apartment off campus. Or she does what she can to survive the semester where she's at and then next year be put on the list for an apartment on campus.

In Topic: My Daughter's Celiac Testing Was Negative...but Allergy Testing +

15 January 2012 - 11:34 AM

Thanks. Yep....I'm not sure she'll be safe eating in the cafeteria. She just won't have that many options. I hope the dietitian can work with her this week and come up with a plan. Otherwise...we'll have to push for some changes. I stopped at the grocery store with her before dropping her off. Anything gluten free either had soy or sunflower oil...I swear. We couldn't find any snacky type foods for her to have. We'll figure it out. It'll just be a bit difficult at first. I don't know how strict she needs to be either. The allergist wanted her to avoid wheat, soy and sunflower....and not worry so much about the others.

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!! :)

In Topic: My Daughter's Celiac Testing Was Negative...but Allergy Testing +

13 January 2012 - 07:28 PM

Thanks for the replies. I did see that there is a proven link to celiac disease. One thing...being positive to wheat, barley and rye on the allergy testing at least solidifies the fact she needs to stay away from those.

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.

In Topic: Told you don't have celiac, but do?

03 January 2012 - 12:47 PM

I hope she remains gluten free. How old is she? My husband gave up gluten just over 2 yrs ago. It took 5-6 months for the diarrhea to disappear but he was feeling so much better almost immediately despite the D while his intestines healed. He too had episodes of passing out and worried it would happen while out of the house. The passing out from intestine cramping scared me too! Once he got sick on the way north for my father's funeral. We had just switched driving because he was feeling so ill...and as I was driving he passed out in the passenger seat...kids saw it all and it was not pretty. I am so thankful he has not had one passing out incident since going gluten free!

Good luck. You are correct...gluten is in so many things you wouldn't ever think of...but once you find that out and find the products that don't contain gluten...you'll be doing just fine.

Oh, and my dh has not been tested for anything...he hates doctors.

In Topic: Yet Another Doctor's Opinion

27 December 2011 - 04:51 PM

So sorry you are dealing with crappy doctors. I am sure I am now labeled the WACKADOO :blink: in our peds' office as well as the whole clinic in our city as I was refused a second opinion within the clinic even though it would have been another office across town. The GI dr within the same clinic denied us as well saying he wouldn't take her because she's 17. Each time I called a place they'd open her file and read what the ped said...which I really don't know what she said...just know the last thing she wrote was "possible pulled muscle" (for my daughter who has had 3 1/2 wks of lower quadrant pain). I finally called a provider out of town 45 minutes away and they got her an appointment pretty quickly.

Anyway, my 3 other kids just had negative biopsies for celiac...yet I know gluten bothers them. I had one son test positive on one of the celiac blood tests so something is going on. His muscle pain went away within 2 wks of a gluten free diet and came back horribly when gluten was added back in. After the negative biopsies the dr prescribed all 3 kids prevacid. ARgh. I can see why in the case of my daughter who has a hiatal hernia and eosipholinic esophogitis (sp??)...her esophagus was quite extensively inflamed. We are all going gluten free and I hope the prevacid is not needed. I know that my husband's severe indigestion went away immediately upon starting his gluten free diet. So I am pretty sure my kids will be the same.

Good luck with your daughter. Do you think you could get a different GI doctor even if you have to go to a different town? You might feel better knowing they are starting fresh and not getting an earful from other doctors that have seen your daughter.


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