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StephanieL

Member Since 17 Feb 2010
Offline Last Active Yesterday, 06:38 PM
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#929781 New Here And Need Help With School Policy

Posted by 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 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 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 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 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 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 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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#923083 Boston- Four Thumbs Up!

Posted by on 07 July 2014 - 06:22 PM

My son and I went to Boston a few weeks ago to see Dr. Fasano.  Aside from Celiac disease he also has life threatening allergies to peanuts, tree nuts, dairy and egg.   This was the first time flying for us and the first time being out of town without access to a kitchen for more than a day. 

 

We had an AWESOME time!!   I had some help (Thanks again Gemini!!!  My Boston personal trip planner ;)

 

We stayed at the Wyndham near Mass General.  There is a GIANT Whole Food right behind that you can get to through the back door of the hotel!!!  Awesome!

 

I shipped a Pantry box from the A place that is always bleeped out on here for spamming ;)

 

Eating out:  I will say that my kid doesn't eat out often. Our expectations are pretty simple, get my kid food he'll eat that is SAFE and we're both happy!  Simple whole foods with minimal processing is a-ok to us!

 

Ruth's Chris Steak House on School Street- Went for lunch. He had a roasted 1/2 chicken and steamed broccoli. He LOVED the crispy skin!!  (like i said, simple is great and no reaction is even BETTER!)

 

Legal Seafood- Long Wharf-  AMAZING!  I emailed them several weeks prior.  On a Friday night the manager called me and assured me they could 100% accommodate him, he entered the reservation himself and told me that he would make sure he was on duty when we came!  Can you say AWESOME!  I looked at the gluten-free menu and saw fries- I held my breath as I asked my allergy Mom questions.

 

DS had grilled shrimp, FRIES, corn on the cob and grapes.  He was in absolute HEAVEN!  He wolfed it down in no time at all!  I asked if he wanted anything else, more shrimp!  Now on the second order they brought it with some kind of sauce.  I sent it back and the manager assured be it was gluten free.  I said what about all the other allergens, they again assured me it was fine...... I wasn't willing to test it so I asked if I could kindly just have grilled shrimp again and they got it for us and again, DS had it eaten in a minute! He asked to go back the next day ;)

 

The Dean's List at the Wydham in Blossom St.- This was where we stayed.  When we were returning from a long day on the way to eat crackers and cereal in the room the chef was talking with someone so I figured what the heck, I'll ask.  He assured me he could make DS some chicken and broccoli (see a theme here?? lol  It's what he eats at home at least once a week so he was excited to be eating it out! lol).  We went upstairs and washed up and then came down for dinner.  He again ate everything and loved it!!! 

 

 

So being a first letting others cook for him several days in a row, they all hit it out of the ballpark!  He loved every minute of it and while I worried after each meal as I always do, we didn't have any issues!!!  We had an awesome trip and he's still talking about it!!

 

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#920984 Food Sensitivity?

Posted by on 20 June 2014 - 11:56 AM

I know many people who do this and IF you have the money and it's not going to break your bank, go for it!  I just see people who are struggling and sick and think this is going to magically cure everything but that's most likely not the case.  I see 99% of these tests say to go off G, D, E and a few others and add them back. Well that is an elimination diet which could be done very easily with a legal pad and a pen and find out the same things.  

 

Even allergy testing for life threatening allergies is a 50/50 shot.  Intolerance testing, if it was scientifically valid, would have even worse results I fear. These tests seem to lighten the pockets of those doing them and line the ones who suggest them. It makes me nervous for people.  A lot of times these are people with things like Celiac but because a holistic practitioner told them to go off gluten they need to challenge to get an actual dx which is REALLY hard on a person.  These are reasons I would suggest a strict elimination diet over any intolerance testing PERSONALLY.  

 

I'm glad you are feeling better with what you found out and hope your trial go well when you reintroduce things.


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#918040 Career And Celiac

Posted by on 27 May 2014 - 06:23 PM

1) It says MAY. Have you called to inquire? Or have a third party call if you don't want to "out" yourself.

 

2) Many times you will find that if you adhere to treatment, these issues are non issues because your Dr. will sign off on them. 

 

I wouldn't give up just yet.


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#915686 Non-Gold Standard Dx Or No Dx--Which Is Better?

Posted by on 10 May 2014 - 06:24 PM

Here's the thing:  1) you know you feel better now 2) you have no way of reliably getting tested (even if you DID test + for the genetics does not 100% mean you have Celiac) 3) you aren't a kid where you need a dx for accommodations.  

 

You have been given the same advice on several threads over several weeks and I've not seen anyone saying anything any different about what you can do at this point. I know you want to know for your kids and I totally understand that.  Are they insured?  If affording it is an issue and depending on where you are, they should be able to get insurance through the state you live in and then you can get them tested if they need it.

 

As for you needing a dx to take when you are away for a weekend....I don't get it?  If you can't eat something, you say no. Bring your own food as you do now.  Getting a letter from your Dr. isn't something I've heard of any adults do unless it was for work (like the military.  


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#910980 Pediatric Tsh Values

Posted by on 31 March 2014 - 06:46 PM

With Gemini's AMAZING help, we were able to figure things out.

 

DS has

-multiple life threatening food allergies

-FPIEs

-Celiac with levels that would not come down

 

The not falling levels was driving me crazy and Gemini talked me through things and we went the endo route. After several bad visits I went with the calling about levels and now DS has been on meds for a while and he's doing well.  We are back to struggling with ttg's but....

 

All that to say, DS didn't have typical symptoms of Celiac OR thyroid issue. It was pure Mom/Celiac board power that got us through.  Hugs. It shouldn't be this hard :(


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#893405 Milk Allergy Now?

Posted by on 25 October 2013 - 07:24 AM

If the only thing she has is a red rash around her mouth, I would not leap to an allergy.  Are her diapers okay?  Any swelling?  Vomiting? Those would be signs of a true allergy (IgE mediated).  It may be an intolerance though those signs are usually GI in nature.  I would be VERY reluctant to do allergy testing at all.  They are notoriously INACCURATE and can lead to removing foods unnecessarily.


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#889029 Emergency Id Tag

Posted by on 19 September 2013 - 12:26 PM

I would not have one for Celiac. My child with Celiac does have one but he has multiple life threatening allergies. 


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#888286 Wheat Bran - Try It - It's Great!

Posted by on 13 September 2013 - 07:16 AM

I am so very sorry, I thought it was candy that posted the link........  

 

So sorry Stephanie :) I apologize :)

It's all good :)


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