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Member Since 17 May 2013
Offline Last Active Jul 02 2013 04:08 PM

Posts I've Made

In Topic: Promising Scope...waiting On Bloodwork

02 July 2013 - 03:58 PM

Thanks! I've been trying to stay positive about all this because my youngest is really very good at reading me and I didn't want him worrying any more than he already was. Poor kid has been terrified that they were going to cut open his stomach and I don't know where he got that from. :(

I will probably post my own thread about food for kids....I just keep running into small recipes that only feed one or two and there are 5 of us here and one is a bottomless pit of a teenage boy! I will keep plugging away at it and figure it out....my brain is just done for a while. Don't think it helps that I'm sick on top of it. Still fighting off the cold I caught after we got strep...good grief.

Sorry WM for hijacking your thread though.



DON"T APOLOGIZE!!  Seriously, this is all so stressful and confusing.  I worked on it an hour or so a day.  We are probably going gluten free as a household when we get back from vacation.  It doesn't help that my MIL thinks she is "helping" when she buys junk food that says gluten-free on it.  I wouldn't let her eat this crap anyway!!!  Ugh. 

In Topic: Why Do I Have To Educate My Doctors?!

26 June 2013 - 05:58 AM

It's hard. BTDT.  I was the one who had to push for an Endo to truly examine thyroid issues after 2 years of elevated tTG's after going gluten-free.  Once on thyroid meds, his next tTG's were (finally) normal. 


3 GI's wouldn't listen to me about the "little bit off" TSH levels being more than a "little" off since changes have been made to that scale and they little was WAY off. 



It sticks. I try and remind myself that a good Dr. isn't one who knows everything but one who is willing to LISTEN to you as a parent and consumer to help determine the best options.


Hang in there. It's a bumpy road for sure but hopefully you'll have your answers very shortly!




I am trying to remember that they have been good about listening to me and then trying to find out the best way to do things.  The comments people make get under my skin right now.  I KNOW that I'm being sensitive to it, which is why I come over here and post it where people will understand what we are trying to do, and why the comments agitate me.  I just LOVE (note the sarcasm) how people think they can second guess/question what I feel is the best course of action for my daughter.  Grrrrrr.....




Hehe, Greebo, I'll suggest that to her next time.....

In Topic: How Long After Contamination Do You Get Your Rash?

25 June 2013 - 12:00 PM

My daughter reacts same day or within the next 2 days.  It varies :(

In Topic: I Could Have Told Them That....

25 June 2013 - 10:29 AM

Nope.  They told me their courier comes every day at 4 and to feel free to call.  The nurse said she would call me as soon as she got the results, but I called yesterday before she looked at the reports.


As far as pharmacies go- be prepared to have to call the medicine manufacturers and for them to give you a canned line of "we do not certify our products but can tell you there are no ingredients that naturally have gluten in them".  Pain!

In Topic: Starting Kindergarten

25 June 2013 - 09:00 AM

Is it a public school?  If so I would request a 504. This is a LEGAL document outlining what they need to do to keep her safe. You must write to the school to request a 504 meeting and I always include a document form our GI (and allergist in our case) stating the diagnosis and what ingestion does to him and why he needs to be on a strict gluten-free diet.


Our accommodations include:

No birthday food (this is school policy)

Unlimited bathroom access

Vetting all art supplies

No play-doh 

Children washing before entering the classroom

DS washing before all meals/snacks


(there are some others I'm forgetting but you get the picture ;) )


Totally stealing this idea......

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