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Thanks to you all. This IS a rollercoaster that is for sure!

IH: yes, I remember that about Pamela's. I bought some and we are going to make waffles this evening to freeze for breakfast. The problem is that she has become food phobic over the years and is very attached to her brands. It is going to be a challenge to get her used to eating gluten-free but I am sure she will be fine in a few months.

Does she like cereal? Chex gluten-free corn, rice, cinnamon, honey nut flavors and gluten-free Rice krispies?

Yes, she'll adapt as she starts to feel better! Hang in there!


"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif

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Does she like cereal? Chex gluten-free corn, rice, cinnamon, honey nut flavors and gluten-free Rice krispies?

Yes, she'll adapt as she starts to feel better! Hang in there!

Well, she eats Eggo waffles each and every day. That only stopped when we moved to Prague, CZ for 2 years and then she ate toast with cinnamon and sugar. My DD has major food phobias because so many things have made her sick. Unfortunately, things that probably didn't make her feel sick get lumped in.

So we are starting from scratch here.

I had a very emotional day yesterday. It was our second day gluten free and my DD stated that she wanted to not be gluten-free and take prilosec. In addition, to that I can tell my hubs thinks this is a fad diet since she doesn't have Celiac. We went out to dinner and my daughter was very sad to not be able to eat the bread. I told her I wasn't eating either. That didn't help.

The good news is that I wrote my husband an email about all of her symptoms that prilosec won't touch and asked him how we could deny her a possible cure to so many of her complaints. I also told him that each doc wants to treat her symptoms. So that means treatment and follow up at a neurologist, GI, dermatologist, therapist (anxiety). All who want her on meds. So why wouldn't we try 3 months gluten free?

I sat down and cried. Felt really sorry for myself. I also got comments about how I am spending money on a new toaster and blender and gluten-free products. Well how much are all these meds costing? One monthly prescription of prilosec is 35 bucks. Huh, same cost as the toaster and blender put together. Are you kidding me!

So my husband responded nicely to the email. He apologized and is on board now. I am sure I will face this battle again because it is frustrating that he can't grab Subway sandwiches for the kids or whatever. Oh well.

I am positive that in 3 months we won't look back but we are keeping a symptom journal to show the GI who didn't even suggest gluten intolerance after she was pronounced not celiac.

I am VERY grateful for this website.

IH; tried Pamela's mix and made waffles. I couldn't have told you they were gluten-free! I loved them but to my DD not eggos. She has a long road ahead of her. I used to love ice cream but now it looks like a bowl of poison to me....she will figure it out when she notices how much better she feels.

After 2.5 days gluten free I haven't heard her say "I am so hungry but I can't eat". I heard that every night for the last 6 months. She hasn't realized that she stopped saying this. I know it is too soon to see a reduction in stomach issues but I think it is a good sign.

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It may be a texture thing on the waffles. Do you have a Belgian style (thick) waffle maker? Eggo's are pretty thin.

That said, my son adamantly refuses to eat something that isn't EXACTLY the same so I know how nuts that can make you. Geez, he wouldn't even eat crawfish etoufee in NOLA because I DIDN'T MAKE IT. But he will eat any chocolate cupcake he sees - could be made out of cardboard and he wouldn't care. Go figure.

I hope it's a good sign that she isn't saying she can't eat. Time will tell.


Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.

Hashimoto's DX 2005.

Gluten-Free since 6/2011.

DH (and therefore Celiac) dx from ND.

Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

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Here is what I did so I could SEE my progress.

I made a list of all of my symptoms.

It was 3 pages long. :blink:

I hung it on the fridge.

As the weeks and months passed, I crossed off symptoms as they disappeared.

It helped me SEE I was healing and improving.

I still have many to go, but it sure beats the heck out of what I WAS suffering with every single day for all those years.

Maybe you and she should make a chart too?

Put "not able to eat, even though I am hungry" on it first.

There's her first symptom resolution ;)

Hang tough, Momma. :)


"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif

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It may be a texture thing on the waffles. Do you have a Belgian style (thick) waffle maker? Eggo's are pretty thin.

That said, my son adamantly refuses to eat something that isn't EXACTLY the same so I know how nuts that can make you. Geez, he wouldn't even eat crawfish etoufee in NOLA because I DIDN'T MAKE IT. But he will eat any chocolate cupcake he sees - could be made out of cardboard and he wouldn't care. Go figure.

I hope it's a good sign that she isn't saying she can't eat. Time will tell.

I love the cardboard cupcakes. Made me laugh!

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Here is what I did so I could SEE my progress.

I made a list of all of my symptoms.

It was 3 pages long. :blink:

I hung it on the fridge.

As the weeks and months passed, I crossed off symptoms as they disappeared.

It helped me SEE I was healing and improving.

I still have many to go, but it sure beats the heck out of what I WAS suffering with every single day for all those years.

Maybe you and she should make a chart too?

Put "not able to eat, even though I am hungry" on it first.

There's her first symptom resolution ;)

Hang tough, Momma. :)

That is a GREAT idea!!!!! I am going to do that tonight. I have a daily diary but it doesn't encompass everything.

In fact, I created my own electronic diary because there was nothing out there that worked perfectly!

Thanks once again!!!

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