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-   -   EOE - gluten free due to auto-immune disease (http://www.lowcarbfriends.com/bbs/celiac-gluten-free/779662-eoe-gluten-free-due-auto-immune-disease.html)

DebLynn 08-01-2012 10:28 AM

EOE - gluten free due to auto-immune disease
 
Hi,

I'm new to this site. This forum seemed closest to what I need to look at for my daughter. She is 5. She doesn't have celiac, but she has a rare auto immune disease (I should cut n paste it's name from wikipedia, but it's nicknamed "EOE"). She needs to be gluten free for 8 weeks to determine if that is one of her triggers. She is a carbaholic right now, so this will be interesting to say the least.

BTW "EOE" is a condition where her white blood cells gather in her esophagus and stomach and attack food proteins. the trick is to find out which food proteins. In most severe cases, all foods are culprits, and children get fed through feeding tubes. I pray so hard that it is just the dairy and gluten, and not all foods. The dr says first step is to cut dairy and gluten, so here I am.

Any tips for starting up gluten free for a five year old little girl? She also has a twin brother who does not have symptoms, but I'm thinking if the whoel family went gluten free for a period of time, it will be easier.

Any thoughts?
Thanks
Deb

wcwendy 08-01-2012 12:16 PM

For somebody of that age, I'd definitely have the entire house be gluten-free.

I had to be gluten-free for 12 weeks before I noticed that I had symptoms; 8 weeks isn't always enough.

Just in case you don't know:

To be truly gluten-free check extracts, spice mixtures, sauces, everything. You likely need to not use any butter, jelly, peanut butter, etc. that has already been used because it almost definitely has been contaminated by knives being put pack into the jar after spreading the item on bread. Gluten-free people should use a different toaster, also.

You can do this!

DebLynn 08-03-2012 08:09 AM

thanks for responding
 
Oh my goodness, you bring up points I had never thought of.

The contamination from the knife can put enough gluten in food to cause issues? Really? I would never even have dreamt that. Wow. Just wow.

You had mentioned 12 weeks is needed for the body to become gluten free? Again, didn't know that.

Thank you so much for the information. I'm rather sick to my stomach over the whole thing. My little girl is so sad all of the time because of the food she is missing out on. It's tough being 5 and not understanding how come your friends get to eat cake but you don't.

So this sounds like all or nothing. No cheating at bday parties or anything. UGH poor Rachel.

wcwendy 08-03-2012 01:55 PM

Yeah, cheating can mess up the whole thing. I'm sorry!

Betty Crocker sells a good gluten-free chocolate cake mix. BC also makes cookie and brownie mixes that I haven't tried.

Bob's Red Mill sells a gluten-free flour. I don't know if that brand is on the east coast or not. You just add xanthan gum then use the flour in your regular recipes. It's harder to deal with when used for pie crusts and pizza crusts. I always cook it all the way before eating it because it tastes like raw beans.

ChapStick and a lot of lipsticks contain gluten. I use Crest toothpaste because, even though Colgate says that it doesn't contain gluten, I had a reaction to it and I've read others say the same thing.

HTH!

wcwendy 08-03-2012 02:01 PM

Kraft & Hershey's write on their products' labels if something came from something that contains gluten. So, if the only questionable ingredient in one of their products is, say, natural flavors if it doesn't say (wheat) (barley) or something like that after it, then the product wasn't manufactured w/ gluten-containing products. :up:

DebLynn 08-06-2012 08:53 AM

wcwendy, you've given me so much more information than I got from her doctor. Just got a general "well avoid this type of food and this type of food" and that is it.

Ok, so now I know I have to be super vigilant, and even on non-food products. Again, I would never have even thought to check chapsticks or toothpastes. Thank you for the tips about flour and dessert mixes. I will look for both of those out here. If I can't find them in a regular grocery store, I'll look into on-line ordering. I think she'll feel much better knowing that she can have some goodies and doesn't have to do without the "fun food" kids like to have from time to time.

This is more difficult than I had initially thought, but if we can find an acceptable way of eating then she can develop these eating habits now for the rest of her life. Since she already has a damaged esophagus at age 5, I'm hoping that we can stop future damage.
Thanks,
DebLynn

cfine 08-10-2012 05:36 PM

I'm so sorry that you are having to go through this! We have been there, and have the t-shirt to prove it :)

It does get easier as time goes by. When my DD had to be gluten free at an earlier age, we couldn't find much at all to eat. Now there is so much out there!!! We are pros at it now. It's just easier to make most things from scratch. I make my own taco seasoning mix, BBQ sauce, things like that. It tastes better too.

We make our bread(I don't really even eat bread anymore but my DD likes it) from almond butter. Having bread makes it easier to eat peanut butter and cold cuts.

wcwendy 08-11-2012 09:39 AM

cfine, do you mind sharing your bread recipe?


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