Lil Update For My Mini-Support System Here :)

[MsCurious]

I will be hanging around the "pre-diagnosis" forum for another month! Saw new GIJoe today, and he was SO much better. He actually listened, wrote things down, asked questions, told me of his concerns, and ordered some new lab tests and is going to do (8)biopsies mid April. Instructions were to stay on gluten ...and cut out the dairy completely (sheepish look) Apparently he wasn't too happy with my hap-hazard attempts at removing dairy from my diet. He gave me strict instructions... zero dairy. I'm sad! I think that will be harder than zero gluten! I do sneak cheese sometimes, even though I know I shouldn't.

He said he really hoped I didn't have celiac disease or gluten intolerance, because it will be a huge change, without both. Quite doable and healthy... just not fun. I know many of you are in that same boat, so if/when that time comes... I'm going to need all the advice and suggestions I can get. Until then, I hope to be a good listener, and maybe share a kind word and encouragement to those just starting this journey. Again, thanks for everybody's kind words of encouragement and support. Its not a fast thing to get this all figured out, that's for sure, and you all make it easier, and less painful, while I play the waiting game one more time.

[iamsarar]

I am new to this forum and being Gluten free but something I DO know about is a Vegan diet. Find yourself a vegan friend There are a lot of non-dairy alternatives out there they can help you with. I use Daiya Cheese. It comes in Cheddar and Mozzarella (spl?) The cheddar taste like American cheese and it melts. I use in for machos, tacos, casseroles. I love in a small town and I found it at the health food store. It is a great alternative.

[salexander421]

If you have a good healthfood store near by there really are some pretty decent dairy substitutes out there...they're just a little pricey. Sorry you have to wait another month but so glad you have found a good doctor!

[MsCurious]

I am new to this forum and being Gluten free but something I DO know about is a Vegan diet. Find yourself a vegan friend There are a lot of non-dairy alternatives out there they can help you with. I use Daiya Cheese. It comes in Cheddar and Mozzarella (spl?) The cheddar taste like American cheese and it melts. I use in for machos, tacos, casseroles. I love in a small town and I found it at the health food store. It is a great alternative.

Ooooh...thanks so much for the info! I had NO IDEA that was available! I'll give it a try! Thanks to you too salexander421.

[ravenwoodglass]

While your at the health food store you could grab some ghee, it is made from dairy but is lactose and casien free. It is basically clarified butter. Coconut oil or shortening is great in baked goods.

[sa1937]

Another thing you could try as a butter substitute is Earth Balance Buttery Spead, one of which is also soy-free. I like it just as well as butter.

[MsCurious]

Thanks so much ... all of you for your suggestions. Silly as it sounds ... EVERY tip and suggestion for palatable replacements is VERY MUCH appreciated! Very very helpful! It doesn't feel quite so ominous with choices... but when its all unknown and there are no choices... that can feel overwhelming. So THANK YOU!

[Igg postive]

Glad to hear you are seeing a good doctor. Staying away from dairy can be hard. I have been lactose intolerant for a long time. You will find you will stay away from dairy since you will feel better. Why is the doctor having you stay away from dairy before the biopsy? Does it interfere with the biopsy? Just wondering.

I have been away for a week. I had my biopsy and went on the gluten free diet. I didn't wait for the results. At first I felt worst. Second day I really crashed. Since then I have been feeling better and better. I talk to celiac friend and she said it took her a month to really feel better. So hang in there. Now since a week has passed I have some of the problems but I am basically feeling better. I hope you get some answers.

[MsCurious]

Glad to hear you are seeing a good doctor. Staying away from dairy can be hard. I have been lactose intolerant for a long time. You will find you will stay away from dairy since you will feel better. Why is the doctor having you stay away from dairy before the biopsy? Does it interfere with the biopsy? Just wondering.

Hi IGG, Nope, has nothing to do with the biopsy...its just making me sick! LOL Minor side effect. Between the lactose intolerance and gluten sensitivity... its just a lot to handle. Just need to get through the month and the minute the biopsy is over... regardless of the outcome... I'm going totally gluten-free, since I have a ton of symptoms, and DQ2.5 marker. That's pretty strong indication of NCGS at the very least, and my lil "mini-tests" have proven how much better I feel off gluten. Essentially, the only thing the biopsy will do (in my opinion) is possibly pinpoint the "type" of gluten sensitivity I have (meaning possible celiac disease)... but like so many others already know...here on this forum... there seems to be a veritable menu of gluten sensitivities out there...that they haven't found the right test for... or given a name too...but that doesn't give them any less validity. Gluten sensitivities are real... and based on the fact that different genetic markers are involved and people have such different symptoms...there's just a TON of things they do not yet know about this toxic gliadin and its cousins of the barley and rye branch of the family tree.

Whew...that was a mouthful! LOL Glad you're feeling better! I'm really really really looking forward to this month going by so I can feel better too! BUT I have to look at the positive side.. since the GI told me to gluten up before the biopsy... I have a month to taste all my favorite gluten foods one more time before giving them up to non gluten forms. ALways have to look for the silver lining! HAHA!

I'm just happy to have a plan going... I have biopsy schedule and I KNOW when I get to go gluten-free! That and knowing I did all the testing I should first, makes me very happy,.

[Igg postive]

I am glad you have a good attitude about waiting the month for the biopsy. That was the hardest wait for me. I tried all the gluten goodies I had an appetite for up till my biopsy. That is a good idea to go gluten-free on the day of the biopsy. You will have fasted for the biopsy. I clean out my frig and cupboard of gluten the next day. I really have been feeling better and better. The first few days were ruff. Then it gets better. I have been losing weight. Strangely I am not as hungry like I was all the time.

Keep me posted of your progress.

[MsCurious]

I am glad you have a good attitude about waiting the month for the biopsy. That was the hardest wait for me. I tried all the gluten goodies I had an appetite for up till my biopsy. That is a good idea to go gluten-free on the day of the biopsy. You will have fasted for the biopsy. I clean out my frig and cupboard of gluten the next day. I really have been feeling better and better. The first few days were ruff. Then it gets better. I have been losing weight. Strangely I am not as hungry like I was all the time.

Keep me posted of your progress.

Thanks IGG for the positive thoughts and support... that means a lot to me... and it helps with the wait. I'm so glad to hear you're doing better and better!

[Looking for answers]

So Delicious Coconut Milk, ice cream, and coffee creamer are all recommended by me.

[MsCurious]

So Delicious Coconut Milk, ice cream, and coffee creamer are all recommended by me.

Coconut ice cream? And coconut coffee creamer? I've never heard of that...is there a specific brand that is exceptionally good? I've never tried the coconut milk either... how does it compare to Almond Milk? I like that, but then I love almonds. Thanks for the info!

[mushroom]

Don't about the other two, but the coconut ice cream (I got it at Whole Foods) is fabulous. Don't remember which brand.

[MsCurious]

Don't about the other two, but the coconut ice cream (I got it at Whole Foods) is fabulous. Don't remember which brand.

Thanks! This put a BIG SMILE on my face! It's been YEARS since I've had ice cream!