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PLGW2012

Member Since 11 Mar 2013
Offline Last Active Dec 20 2013 12:42 PM
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Posts I've Made

In Topic: Am I Accidentally Glutening My Daughter?

17 December 2013 - 10:37 PM

Wow, thanks so much for the replies. This is so frustrating, because I start to feel like we have it down, then we learn about something new, like cross-contamination! We've been careful with peanut butter and jelly jars, but the pots and pans never occurred to me.

I did stop using regular flour, because I read that it stays in the air, and now the whole family eats almond flour and coconut flour baked goods instead. But the other kids still eat regular bread and tortillas. The rest of us have all tested negative for celiac, but I that either my husband or I must have it because it's genetic.

I'm glad you all replied, because now I feel more comfortable insisting on follow up tests. I assume if she's not improving, we need to be more careful, right? Or is there something else that would need to be done?

Thank you all so much!

In Topic: Just Starting Out, How Careful Do You Need To Be?

17 March 2013 - 06:38 AM

Thanks for all of the info. I can already tell this is going to be a challenge. Last night at dinner at a restaurant (after I'd researched what she could eat) my husband handed her a breaded mozarella stick and she ate it before I could stop her. My husband and friends were saying, "Oh, it's  a process, we'll get used to it."

 

But after the dr told me to look at it like it was poisoning her, I don't think it should be a process, I think we should just get rid of it all now and never let her have it again! I think the hardest part will be teaching her and the rest of the family to watch for gluten.


In Topic: Dr Says Go Easy On Gluten Before Biopsy?

15 March 2013 - 10:28 PM

You might want to have some popsicles on hand after the endoscope.  The throat can be a little sore/dry.  Maybe a quick stop for a 7/11 Slurpee, if you have someone to sit in the car  with your 8 year-old.  (Those are name brands that I have never found gluten in. B) )  Those test results are high enough to change the diet right after the endoscopy. :o  You might want to avoid casein (protein chain of dairy) if the damage is severe.  (the tip of the villi that gets blunted/damage is mainly where the digestion of dairy happens)

 

Having a stash of gluten free favorite stuff to choose from on hand at all times makes the diet much better.  Even if it means having more junk food on hand than you like to offer as a parent.

 

Don't hesitate to ask for gluten free food substitutions/ advice here.  I have to admit I nearly panicked about not having Smores during campouts. :blink:   Then someone said,"Just use gluten free chocolate chip cookies." :rolleyes:   Duh.  See the world does not end!  Now days 2 pieces of chocolate with marshmallow in between is the favorite choice of S'mores.

 

Don't be surprised if an accidental glutening causes a symptomatic reaction after the gluten free diet has started.  Keep a food journal to track down hidden gluten or determine if there are other food sensitivities.  I say journal because locations of where you have eaten may be part of a cross contamination puzzle.  Your home rice pudding recipe may contain egg, but Kozy Shack rice pudding is gluten free with out egg.  (should egg ever be another food intolerance)  Keep a big pocket to store ingredient labels.  (Had to track down other food "triggers" for added diagnoses of Eosinophilic Esophagitus which has a connection to Celiac~ so this is information learned through experience that I wish I had at the start.)

 

Thanks for the suggestions, I feel more confident now about starting to go gluten free immediately after the procedure.

 

I'm glad you mentioned Eosinophilic Esophagitus because they are doing some kind of procedure that I am still reading about at the same time of the endoscopy Tuesday to check for that. The doctor keeps referring to it as EoE and says that it's really important to check for it, but he hasn't gotten back to me about why it's important. So I'm glad to hear that it's a legitimate thing to be concerned about and they aren't doing unecessary testing.

 

I also didn't know that the endoscopy could tell us how serious the damage is. I thought it was more just to confirm the celiac diagnosis. All of you on this forum are much more informative than the GI doctor, who takes days to respond to general questions!


In Topic: Dr Says Go Easy On Gluten Before Biopsy?

15 March 2013 - 01:00 PM

Wow, thanks so much nvsmom. Every time I read this forum I learn something new. I never thought to check vitamins! And thanks for explaining all of that...it's crazy that a kid with those blood tests could be mostly without symptoms!

 

That is very valuable input. I think we will do a "last oreos" and "last pizza" and that's it. I was getting really confused, but I think going gluten light until the biopsy is a good plan, and then gluten free right after the biopsy.


In Topic: Just Starting Out, How Careful Do You Need To Be?

13 March 2013 - 09:55 AM

Oh my gosh, gluten free soap? It looks like diet is only part of it then. She loves lip balm and Chapstick (I shouldn't have said "gloss", she's only 8 so it's not like she's wearing makeup. So I'm gathering that basically anything that could potentially get n her mouth could cause problems, right?

Her dr is a self-proclaimed "celiac expert" but he only mentioned diet, not soap or anything else!