Where To Draw The Line

[The Glutenator]

I was grateful for some recent meal/lifestyle ideas for my new dietary situation. Since a strict gluten-free diet has not resulted in dropped antibody levels and my intestines are still being damaged, my doctor is making me go on a diet without any foods processed in facilities with gluten, so no gluten on the labels just isn't good enough anymore. Turns out almost everything falls into this category, even most products blaring a gluten-free label. To make sure I am not refractory celiac I am basically forced to up all processed foods, but I don't know where to draw the line. Please please I'd like some help with some of the following questions, because I need to balance lifestyle too.

-ketchup and mustard?

-Strictly gluten-free brands (El Peto, Kinnikinnick, and Glutino)?

-Knorr xoxo broth (to make my own soups)?

-Is there any chocolate you know of?

-Egg beaters...I can't handle eggs at this point so these are almost a necessity for baking

-Bob's Red Mill Mighty Tasty Hot cereal

-Eating out at all?!?!? What about gluten-free stuff from a local bakery?!?!

THANK YOU, I REALLY NEED ADVICE FOR ALL THIS STUFF!

I am fine baking from scratch for things like muffins for breakfast (since I can't have any cereals or eggs) and also for biscuits (when rice and quinoa get boring) or desserts . And I can start making soups and stuff, plus everyone's suggestions for making big batches of foods on weekends then freezing and using leftovers for lunches and other meals the rest of the week.

I really do want to thank everyone for support and ideas from my last thread and these are just some of the few questions I have left.

[srall]

Good questions. I consider myself on a whole foods diet, but I'll still get sun nut butter and glutino crackers sometimes. Also I buy gluten free chicken broth to make soups. So I'm really not being that pure. I guess I'd like to know where those lines are as well. I don't think I'm quite as sensitive as you are though.

[Roda]

I'm kinda in the same boat. I recently did give up most all processed items even gluten free ones. I discovered I react now to sesame. I did not give up the condiments but I did give up all Bob's Red Mill products because of the potential of contamination from the certified gluten free oats. I react badly to the certified gluten free oats so I quit eating Bob's products in desparation to figure things out. I am sticking right now with Ener G brands of brown rice flour, potato starch and tapioca. I seem alright for now. That same brand has an egg replacer you could try if not sensitive. Also I think you can use chia seeds or flax to replace eggs, but I don't know how. I also don't go out to eat at all. I take food with me everywhere and for the most part I make all my stocks from scratch. I still have a few "processed" things to weed out but it seemed daunting to do all at once. I am also taking creon and it is helping alot. I am going to get repeat blood work in a few months to see if the changes I made are helping. I'm so wanting to stay of steroids if I can. My doctor wanted me to take them for a month, but I wanted to try other things first. What antibodies are elevated, some or all? The only one that is elevated for me is my IgG gliadin. It has never been "negative" since I first had it checked 6 months after diagnosis (original dx was made on positive IgA tTg and confirmed biopsy only). My last tTg was 5 (ref. range >19 positive) in Feb. of this year. It started out at 78 at diagnosis.

[Dixiebell]

This is kind of off the subject you were asking about but I thought it might interest you.

Someone here recently mentioned this web site Open Original Shared Link

I think the Dr. takes people off all grains.

[Salax]

Wow. Well I hear the best diet is one with NO, and I mean NO processed foods. Hard as that might be, your body likes it better and it is natural.

So an idea, maybe crazy. How about things like Mustard or Kechup you make at home? All natural ingredients, right? Maybe thats the way to go. Make more things at home.

Or you just don't eat those things for a while see how you do?

I hope you feel better.

[Marilyn R]

I found that I couldn't handle quinoa, the protein is too similar to gluten. Have you tried eliminating quinoa?

I've found it safer to make my own vegetable or chicken stock for soups, and it saves money.

I'm finally getting better, but don't eat out at all, avoid gluten-free products for the most part (but purchase mini Lara Bars at Target for snacks.) I'd probably give up the local bakery if I were you.

Fresh whole foods are going to be best for you. Try thinking of it as living as your great grandparents did, or look at recipes for other cuisines, like Vietnamese or Thai or Meditteranian.

As for ketchup, I don't use it, but saw a recipe on the forum for making your own. Mustard should be ok.

I wish you good luck and know you will get better advice than I just posted...

[The Glutenator]

  On 10/11/2010 at 10:43 PM, Roda said:

I am going to get repeat blood work in a few months to see if the changes I made are helping. I'm so wanting to stay of steroids if I can. My doctor wanted me to take them for a month, but I wanted to try other things first. What antibodies are elevated, some or all? The only one that is elevated for me is my IgG gliadin. It has never been "negative" since I first had it checked 6 months after diagnosis (original dx was made on positive IgA tTg and confirmed biopsy only). My last tTg was 5 (ref. range >19 positive) in Feb. of this year. It started out at 78 at diagnosis.

I am doing the same thing. My doctor is having me re-do the blood work in 6 months, then again in a year. If that doesn't work it is steroid treatments. like you I do not want to go down that road. My last tTg was as high as yours too, and hadn't dropped at single point since diagnosis, even though I have been gluten-free for about 7 months now. A second set of biopsies also came back positive (and I have been diligent...not cheated on the diet once). That is why I am looking for some help on where to draw the line here, so I can hopefully take care of this with any horrible treatments that will put my body through even more.

All feedback is greatly appreciated, thanks guys I really am freaking a bit about this.

[dilettantesteph]

I am very sensitive to trace gluten. I'm sure that I would be diagnosed as refractory sprue if I wasn't absolutely crazy about my diet. My son is the same way and also gets DH so he is a good gluten indicator for us.

I can't eat any of the things that you mentioned. I'm very sorry to tell you that.

Grains I buy whole, sort out the things that don't belong. I have found gluten grains in almost everything. Then I wash with soap 3 times, rinse carefully, then I can dry and grind. I cut out the gums, so baking isn't very successful recently. For meats, I buy the bulk packages sealed by the meat producer. I can't do the ones cut up by the store. I don't eat produce with wax coatings. I go organic as much as possible. I wash carefully and peel everything I can. I only eat nuts in the shell that I shell myself. I make my own nut milk. I can only eat dairy from one farmer I found who pasture feeds his cows and then supplements with corn and soy and not gluten grains. Currently I haven't found any sweetener that I can tolerate. I only use herbs and spices which I can get whole and wash carefully.

It isn't as bad as it sounds. Once you get into the routine of eating this way, it is pretty easy. Plus, you save a lot of money not buying those gluten free foods.

Hopefully you will achieve results without going as crazy as I do, but at least you know that you might and you won't figure that you have refractory sprue before you go far enough.

[sb2178]

Definitely not the local bakery, unless it's a totally gluten-free facility and I'd still be wary because you don't know what their sourcing is.

You can make your own mustard fairly easily.

[tarnalberry]

If you're trying to figure out if you're celiac, I'd eliminate ALL of those things - they aren't whole, naturally gluten free foods. You could (if you want) make your own ketchup and mustard, make your own stock, egg beaters ARE eggs (so you'd need to avoid those anyway), and avoid restaurants of any kind. It might be a pain for now, but it's more of a "adjust to another new way of eating", and you may find that it's only temporary.

[heatherjane]

  On 10/11/2010 at 10:09 PM, The Glutenator said:

I was grateful for some recent meal/lifestyle ideas for my new dietary situation. Since a strict gluten-free diet has not resulted in dropped antibody levels and my intestines are still being damaged, my doctor is making me go on a diet without any foods processed in facilities with gluten, so no gluten on the labels just isn't good enough anymore. Turns out almost everything falls into this category, even most products blaring a gluten-free label. To make sure I am not refractory celiac I am basically forced to up all processed foods, but I don't know where to draw the line. Please please I'd like some help with some of the following questions, because I need to balance lifestyle too.

-ketchup and mustard?

-Strictly gluten-free brands (El Peto, Kinnikinnick, and Glutino)?

-Knorr xoxo broth (to make my own soups)?

-Is there any chocolate you know of?

-Egg beaters...I can't handle eggs at this point so these are almost a necessity for baking

-Bob's Red Mill Mighty Tasty Hot cereal

-Eating out at all?!?!? What about gluten-free stuff from a local bakery?!?!

THANK YOU, I REALLY NEED ADVICE FOR ALL THIS STUFF!

I am fine baking from scratch for things like muffins for breakfast (since I can't have any cereals or eggs) and also for biscuits (when rice and quinoa get boring) or desserts . And I can start making soups and stuff, plus everyone's suggestions for making big batches of foods on weekends then freezing and using leftovers for lunches and other meals the rest of the week.

I really do want to thank everyone for support and ideas from my last thread and these are just some of the few questions I have left.

I see you joined the forum this past March...how long have you been gluten free? It took me over a year to get my bloodwork down to normal levels (originally off the charts). Sometimes doctors can be too quick to say the diet isn't working when it really takes a lot of patience and trial and error.

Enjoy Life makes chocolate that is free of all the allergens and made in a gluten-free facility.

[dilettantesteph]

I've tried the Enjoy Life chocolate and unfortunately I can't tolerate it. I can do raw cocoa nibs. I wash carefully, roast and grind. It isn't bad, but now I can't find a sweetener that I can tolerate to go with it.

[Aphreal]

Gluten free wasn't enough for me either. I had to go lowcarb and low sugar. I do notice a difference in my gut although I still have D/Const. Being gluten-free and low carb, this really takes out pretty much most processed foods. I eat meat, potatoes, veggies, fruit, beans.... sometimes a piece of chocolate (anything plain) and RARELY crackers or gluten-free cereal anymore. I will make gluten-free pasta maybe once a week or once every other week.

Just a thought.

[The Glutenator]

  On 10/13/2010 at 2:27 AM, heatherjane said:

I see you joined the forum this past March...how long have you been gluten free? I

I have been gluten free since March, so almost 7 months (and have been 100% dedicated to the diet). It is just a bit discouraging that the levels haven't dropped at all. I guess I will take out anything processed for now, and do all baking and cooking myself from scratch. When I got back for more bloodwork in 6 months, if the levels have started to come down maybe I can try re-introducing some things like products from dedicated gluten-free brands, plain chocolate, etc. Then when I go back in a year for more blood work, if it stays down I know I was still adjusting and normal gluten-free is good for me (fingers crossed!). If it goes back up, I will need to stick to this from-scratch lifestyle (boo-hiss). If they stay high regardless, at least I will know I have done everything I can. I am still quite upset and overwhelmed to be dealing with all these complications of a disease I thought I had under control, so thank you for your guidance and support.

All of this is so easy to say...I mean "make everything that touches your mouth from scratch"...there, I said it. But, actually doing it is another whole story. That is why this forum is good, there are people out there who are actually forced to do it, like me. Breakfast and snacks will be the worst. Breakfast was always a fast gluten-free cereal and fruit. Then snacks will be rough because I am very active and rely on carbs quite a bit for energy, which is really hard when there are no convenient carbs around. But, I have no choice and have to do this. Grin and bear it!