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StephanieL

Member Since 17 Feb 2010
Offline Last Active Today, 07:10 PM
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#936980 Chef That Wants Your Feedback

Posted by StephanieL on 16 December 2014 - 08:03 PM

My biggest frustration is getting chefs (and the staff between them and us) to understand that we don't make these requests for fun but that we must eat this way.  I do not mind paying more for a meal I KNOW is safe for my child.  If you can cook something great for him (he's 7 and along with Celiac has life threatening food allergies to egg, peanuts, tree nuts and dairy as well as bananas) we will return and tell all of our friends who live in allergy land about your place and how you were WILLING AND ABLE to cook for my kiddo safely.  Real food cooked safely is all I want.  If you can provide a dessert for him- I just may kiss you!  This has only happened to Disney with products we know (Enjoy Life brand and So Delicious ice-cream)


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#933653 Hospital Stays

Posted by StephanieL on 28 October 2014 - 01:39 PM

Even when having the endoscopy done, the hospital could not guarantee safe food for my kid. We have a much longer list than just gluten but they still didn't have a clue. This is a "world class" top rated hospital-

 

Take your own food.  If you can't communicate that to them, you most likely aren't in any condition where you are actually eating food anyway.


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#931228 Endoscopy Or Not?

Posted by StephanieL on 23 September 2014 - 07:26 PM

I can understand having different thoughts on the procedure.  Perhaps asking DH why he's so against it when it may be the ONLY way to tell if there is an issue because of the IgA issues may help you get to the heart of it and help work through it (if you are thinking you want to do it).  My DH HATES hospitals.  Really hates them. Not fond of Dr's either.  Most times when it is a major decision we have to make walking away for a day or two then coming back together with thoughts and questions he has has been helpful for us.  

 

It's important to remember- This isn't a "diet" that you can go off of.  This is a LIFE LONG requirement.  Would he rather her not have the information to make that life long decision?  Seems easy enough now but what about high school, college and beyond.  Do you want to say "oh we thought we were right" or would you prefer to have "proof" to show her?  Just some things to think about.

 

Is a procedure for a kid fun for a parent? Nope.  Not even a little.  Does it help us make the best decisions we can for our kids at this point in time? It can.


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#930275 New Here And Need Help With School Policy

Posted by StephanieL on 10 September 2014 - 01:03 PM

I really have tried to refrain but this is beyond frustrating.

 

1) Are you in the US? That could change things vastly. 

 

2)  It sounds like there is a PACKAGED facility warning the school is talking about. I haven't heard of ANY school ever saying anything about home made stuff. This policy is not helping anyone really as when they are that ridiculous no one pays attention. I would get a 504 plan going and address it there. 

 

3) The school has to offer accommodations that offer the LEAST RESTRICTIVE environment for ALL students.

 

4) Would it be okay with you who have kids with Celiac to make them go eat by themselves in an area away from everyone? I doubt you would think that was very fair or kind.  Please think before making suggestions that are damaging to these kids-they have enough to deal with.

 

5) Celiac is not a life threatening food allergy.  YES they all need to stay away from the offending food. Yes it is a life long dietary change.  Your kid touching something that had gluten on it and rubbing his/her eyes is not going to put them in the hospital, in the ICU or potentially kill them.  They have the same management and should be taken EQUALLY seriously and they are BOTH covered by Section 504 of the ADA here in the US and having Celiac does qualify for a 504.

 

But it won't kill your child with one exposure.  That is the reality of food allergies.  We manage both and we manage them the same and they are both addressed in our 504 BUT I have to look at the accommodations differently.  I wouldn't ask for a gluten free classroom because the repercussions are vastly different.

 

Should one be taken as more serious- NO.  

 

Does one have very different consequences- YES.  

 

Should they ALL be protected- ABSOLUTELY!


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#930161 New Here And Need Help With School Policy

Posted by StephanieL on 09 September 2014 - 04:24 PM

I will not leave the boards over this but I will not comment further on it was all I was meaning.  Can't chase me away that easily! lol

 

Thanks for the support those of you who know me and my "credentials" as they may be ;)  I do appreciate the support! <3


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#930092 New Here And Need Help With School Policy

Posted by StephanieL on 09 September 2014 - 09:38 AM

It should then not be stated as a fact per board rules: "5) Any claims you make here should be based on legitimate sources, or be expressed as opinion, experience, or inq

Are you serious?  I am stating there are people who are sensitive enough that they need certain accommodations to be safe in a school environment.  I have stated SEVERAL times that they are few and far between. I have stated that there are ways to make accommodations so that every student is kept safe. 

 

I am sorry that my years here on this site and my years living with a child with life threatening food allergies doesn't give me any credibility with you however may people here post personal EXPERIENCES.  I do not have a study on how many kids need these kinds of accommodations but that does not mean that it doesn't happen.  Again, as I stated most likely because they are few and far between. 

 

I'm really trying to understand what your issue is.  There is a rule and the OP can fight it or deal with it however they see fit. Why are you questioning what I know and have seen, because there isn't a study on it?  

 

I am done with this thread as I obviously have nothing credible to add.


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#930057 New Here And Need Help With School Policy

Posted by StephanieL on 09 September 2014 - 04:17 AM

The potential of a kid dying kind of does supersede another kids dietary needs.  There ARE kids who need that wide of an accommodation.  

 

I am not a proponent of schools banning nuts for exactly as you stated, it gives people a false sense of security and TYPICALLY is overdoing it.  There are many different ways people choose to deal with it and it sounds like the school has made that decision so I don't think arguing the policy is really worth it at this point. I think giving ideas how to work with the policy is more important at this point unless the OP is looking to fight the policy, which I would if I felt strongly about the need for my kid to have nut products at lunch.  I do think there could be a meeting in the middle if it is NECESSARY to have nut products in the kiddos lunch.


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#929782 Testing Options For Children

Posted by StephanieL on 06 September 2014 - 12:08 PM

If you are dx, many Dr's will accept a kid with symptoms and positive blood work and maybe genetics for a dx. You won't get one with NO testing most likely.  You may be able to get away with no biopsy depending on how your testing works out.

 

I would suggest if you are near a large Childrens Hospital, calling the Child Life people to manage the blood work.  They are good at that kind of thing.  I have heard good things about Buzzy too.

 

Good luck
 


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#929781 New Here And Need Help With School Policy

Posted by StephanieL on 06 September 2014 - 12:04 PM

There are people who are allergic enough that they need that strict a rule.  They are few and far between.  

 

That said, facility warnings are 100% optional. The school doesn't know that something is from a nut free facility because they manufacturers don't have to say that and I HIGHLY doubt that every single snack coming in is from a PN free facility.  I would not pack anything with nuts in it but "processed in" free school- I doubt that is happening at all. 

 

The school won't tell you if there is an allergic child in the school so I would set up an area where your kid eats slightly away from others  (but not too removed) and call it a day. I would also make sure your child knows there is no sharing.  Setting it up this way, if there is a child with a severe enough nut allergy that it would be an issue, they can park that kiddo on the other side of the table or whatever so BOTH kids are safe!


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#929432 Relapse Of Symptoms

Posted by StephanieL on 03 September 2014 - 11:02 AM

Yes very true about the food allergies. My sons symptoms were far more severe and confirmed by an allergist. We do keep a food journal, but since I make everything at home, I would almost need to include recipes (we are dairy, gluten, egg, soy, peanut, treenut free) because a banana muffin isn't just a banana muffin when you're modifying everything. I just feel bad for her always hurting. Definitely have a starting point tomorrow and I put in a call to ask about glucose testing. Thanks again for all of the suggestions.

 

 

Yes it is more an ingredient list. We've had to do it and I would write things like pancakes and list the ingredients the first time or if I changed anything I would not the change.  If it was something prepared I would add the brand and save the packaging.  This was the only way we figured out DS's coconut/palm oil allergy and it took a while!  


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#928632 What Is The Strangest Place That You've Seen Gluten?

Posted by StephanieL on 27 August 2014 - 01:04 PM

The thing with theses kinds of list is that so often it starts this "there's gluten in WHAT?" when they are very often isolated instances. I just caution people that just because it is in ONE kind of thing may have gluten doesn't mean there needs to be a mass worry about it! I think that's how the whole envelope thing started.


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#928001 Gluteny Baby Faces

Posted by StephanieL on 20 August 2014 - 09:46 AM

Soap and water is best.  


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#927566 Coping With The Isolation And Rage

Posted by StephanieL on 15 August 2014 - 10:24 AM

First off your language is pretty derogatory and rude and perhaps changing that may help you get further on forms and in life in general.  Calling anyone a re%$#d is truly offensive.

 

You aren't entitled to a free meal. You aren't entitled to everything everyone else has.  People are inviting you to thing, they want you there. So what if you have to take your own food or eat before?  Many people for many reasons live like that.  Allergies, diabetics, tube fed people.  Is it fun, no but it is what you need to do to take care of yourself.  

 

Your Dr. seems to be pretty extreme and it often isn't necessary.  A separate toaster, sure.  A different microwave? I've never heard that's a necessity. Covering things should be plenty.  

 

How do you cope?  I hate to tell you this but you buck the hell up and deal. It isn't a life sentence, its a change in diet for your health. You seem to know what you need to do but you want everyone else to make your life easier for you and that's just not reality.  YOU make a choice to be healthy and YOU make the choice to be happy.  It really is that easy. 


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#923523 Boston- Four Thumbs Up!

Posted by StephanieL on 10 July 2014 - 05:25 PM

 

 

 

I was alone with him in an elevator, too............ B) 

 

You're starting to creep me out now!!! lol  snort!!!


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#923091 Results All In - Still Confused...

Posted by StephanieL on 07 July 2014 - 08:41 PM

Is he nursing (grin poop- formilk hind milk issues) ? Just hitting major milestones (extra calories for extra activity)?

 

Honestly Celiac isn't the first thing that would pop in my head with that. Now with the IgA deficiency that does throw a monkey wrench into things.  Being positive for the gene isn't really that telling for anything other than that Celiac is a POSSIBILITY.

 

Give what you told and the desire to redo the scope, I (as a Mom) would not change his diet.  If they are going to re do the scope AND redo it PROPERLY ( 4 samples are not sufficient) I would much rather it be done correctly while on a gluten containing diet.  

 

If all the other tests are good and there are no vitamin deficiencies or anything going on I would really not change anything till there was a proper scope.  Take that from someone who is basically living this now after 4 years on the gluten-free diet and there still being issues BUT also follow your gut Mama!! 


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