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Member Since 06 Apr 2007
Offline Last Active Aug 27 2009 09:30 AM

Posts I've Made

In Topic: Turning My Mind Around In Knots

21 September 2007 - 03:08 PM

Thank you for all of your responses. Crittermom, it means a lot that people do read the post and care.

NewGFMom - I am realizing what a huge undertaking this all is. While we are doing the probiotics I'm going to do a lot of research. I do cook so hopefully this will help me out in the long run. I think we're all going to have to do it at home in order to stay sane.

Glutenfreegirls - my 5 y/o is my middle daughter - she has a 7.5 y/o sister and a 2.5 year old sister. my 5 y/o is the only one who has these obvious issues. I guess maybe we'll find out if we all go gluten free who else it helps. Food has been a central part of social structures since the beginning of time, I'm thinking we just need to reorganize what kind of food is "special" and worthy of those significant celebrations

I will do anything to help her but this all feels so daunting.

In Topic: Turning My Mind Around In Knots

21 September 2007 - 04:23 AM

Ridgewalker and Darn210 thanks for your insights. It seemed so much easier to think of gluten free when we were looking at an actual diagnosis of celiac. Especially since now that we are casein free she is starting to question why she can't have some of her favorite foods. She didn't mind not having the straight dairy/cheese but the casein seems to have hit her harder.

I've been keeping track of her BM's for the last 8 weeks or so. I even took some pictures (gross!) so that if I missed one she could tell me which picture that it looks more like. How long does casein take to get out of her system? We've had just a couple of slip-ups when I missed it in a cookie and in the regular smart balance butter.

When you do a food diary are you writing down absolutely everything?

For the next step I'm thinking of doing the probiotics to start with while we continue with casein free and continuing to document her BM's. How long to know whether that is working?

I know a lot of people on these boards have seemed to have gone gluten free "on their own". My worry is that as she gets older she is going to question why she has to do this. Right now she already tells me that she "feels fine and she doesn't want to see any more doctors!" (Amen to no more doctors!!). However, I don't think she knows any different, really! She has had belly problems since she was born, worse at some times than at others. We will do what is necessary to help her but it sure sounds tempting to do the Enterolab route where there is a piece of paper that gives evidence.

Has anyone had luck with enterolab after doing gluten free for a while? Try gluten free to see if we see a change/difference. Then if it seems that we do see a difference to get back up confirmation with the lab?

Thanks for answering some more questions. Do you ever feel like the lone fish swimming upstream?

In Topic: Just Getting Started...

26 April 2007 - 05:34 AM

I just wanted to say "HI". We are still in the "figuring out" stage with my almost 5 year old daughter. We live just south of you in Bradenton but our Pedi GI is up there with All Children's and we were there last week for a upper endoscopy and biopsy. I am not qualified to answer any of your questions but I wanted to give you a virtual ((hug)) and tell you I know how you are feeling right now!

In Topic: 4 Y/o Daughter With Hla-dq8

07 April 2007 - 04:33 AM

Yes, celiac is more common in those 10% who have low IGA. One would then expect them to run the antigliadin and tissue transglutaminase tests in the IgG version.

Thank you so much for replying. My head is just spinning lately! Her biospy isn't until the 17th so I feel like I have a lot of time to think and wonder (and pray!).

You know, I was wondering why they didn't run the IgG AGA and TTG as well. It was my general pediatrician who was ordering the tests based on what she understood the GI docs to say. At our GI consult he mentioned that there were a few more tests he would have ordered but I guess she decided not to do them yet. I think after the DQ8 gene showed up they figured the best course of action was to go for the biopsy. At our GI consult on Thursday he pretty much said that he thought she was "a good candidate" for being Celiac based on her symptoms. Especially her short stature and drop on growth curve. There is some question whether she has difficulty processing other "sugars" like maltose, sucralose, etc. When he does the biopsies he is going to send one to check for an absence of the enzymes related to those sugars.

Do the subtypes matter very much? What kind of light will that shed on her probability of having Celiac?

Thanks again!

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