Okay....what Do I Do? Really Need Some Help Here...

[kbabe1968]

In July, I had a BUNCH of tests done. I had 2 of the Celiac blood tests done and they came back inconclusive. My doctor wanted to do an upper GI to see if there was damage to the small intestine, he said that would be conclusive. He also said that the blood tests often only show out right allergies and not sensitivities...

Anyway...to avoid the fee for the upper GI (we have cruddy insurance right now, you need a referral to look at your nose in the mirror), I was considering following a gluten free diet for a while and see if I responded with better health.

Problem is, that I have NO IDEA WHERE, how to start.

ALSO, financial resources are limited, buying a bunch of books will be out of it. I can go to the library, though.

Are there any free downloadable resources? lists, ingredients to avoid (besides outright gluten).

PLEASE HELP!!!

[CarlaB]

You have found the best resource here. There are good books, the problem is that companies change their recipes all the time, so a book may say something has gluten that does not, or vice versa.

To start off, don't start looking for fancy gluten replacement products, they're very expensive. Start with meat, eggs, fish, veggies, fruit, rice and potatoes. A simple diet of these products will give your body the nutrients it needs to heal. Many people are sensitive to complicated foods, even though they do not have gluten in the beginning.

Next, do a search for Nini under members, she's a regular around here. She has a link to a newbie kit that has lots of advice for newbies.

Then, you can start looking for replacement products for foods you miss. I have literally replaced everything I used to eat. Everyone comes here on Christmas Day and you never would have guessed that it was a gluten-free table.

I like Tinkyada Pasta, that's the best gluten-free recommendation I have. If you're a cereal eater, Cocoa Pebbles, Fruity Pebbles, and Dora the Explorer are mainstream cereals that are gluten-free -- ALL the others have malt, wheat, barley, etc. You can get some specialty cereals from the health food store ... I'm not a cereal eater-- I eat eggs and gluten-free toast in the morning, or gluten-free waffles (Vans).

[Guest cassidy]

Someone here will come along and give you a link to a newbie guide. You can certainly try the diet and see if that helps so you don't have to have a biopsy. You really don't need to buy any books because all the info is online.

In the beginning I would recommend sticking to naturally gluten-free foods like meats, veggies, fruits and rice. That way you are eating easily digestive foods and you don't have to worry about labels.

The homepage of this site at the bottom has great links about all the terms gluten can go by and which foods are safe. I would search around in that area and see what you find.

It really does get easier. Good luck.

[Ursa Major]

Here is a link to Nini's website: Open Original Shared Link Scroll down to the bottom to find the links to her newbie kit. It will help you a lot.

The best thing to do is just read yourself through this forum and the home site. Scott has fabulous information here. He will search for cutting edge scientific papers (not necessarily recognized by mainstream medicine yet, though), and post them on his site. He also owns the Celiac.com store (Gluten-Free Mall). Just look on the top left, and click on Site Index, and you will have hours (or rather days, weeks.......) of great information to read.

And ask questions. Remember that NO question is a stupid question around here. If you feel you need to know something, then the question is a valid one, and we'll be happy to answer.

[Kaycee]

Welcome Kbabe,

If only I found this site in the beginning.

One thing to add, have a food diary if you have the time, that way if anything gives you grief you might be able to figure it out by looking at what you ate over the last few days.

I have been gluten free for a year, it was hard, and I endorse what Carla says about using basic food, to start with, as most fresh food is gluten free, and then worry about speciality products later.

To start with I tried most things that looked gluten free, but I made many mistakes and as I was eating so many different things and different additives, I could not suss out what was giving me grief, even though I had a food diary. As the months went on, I slowly got to the diet that Carla recommends, and I call that my base level, where most foods that can cause problems are avoided, and after a while I started adding other things in, one at a time, like milk, peanuts, soy products and of course those prepackaged food items. You do it slowly just to be sure that you do not have any other intolerances.

Another thing to consider would be make up and moisturisers etc. Sometimes they can have gluten in them.

Good luck.

Cathy

[kbabe1968]

THANKS!!!

Working on getting all the wheat out. I'm a SAHM of 3, though...so eliminating out of the house completely is going to be a struggle. Going to need to go about it cautiously. I certainly would love to make it a completely gluten free home, especially for me!

Your tips, and links have been really helpful. I have a lot of investigating to do.

I found the brown rice pasta (Tinkyada?) and some rice crakers that had "gluten free" on the label. So that will keep me from munching on the kids stuff. I have lots of fresh meats, fruits, etc. here already that I know are gluten free.

Baking will be an issue, as my kids love "treats". I can't chance having treats int he house b/c I have NO will power...but I want to get better desparately!

Hubby & I set the date at 1/1/2007 to officially start. I need a date, mentally. But I'm excited. I feel armed with enough info to be dangerous and desire enough to keep looking to get better.

Anywere that would be good to start on baking alternatvies and how to adjust recipes (i.e. every Saturday morning is pancake day, I'm going to need to find a way to make pancakes they will eat that I CAN eat).

THANKS!

[Jestgar]

I find that even the worst pancakes taste pretty good with peanut butter and chocolate chips on them

[GFBetsy]

You could also check out the website Open Original Shared Link. Lots of recipes and tips for cooking gluten free . .. all free of charge. The pancake and waffle recipes are FABULOUS . . . only one of my kids must eat gluten free, but everyone loves the gluten-free waffles. Try the soft batch cookie recipe, too. (Chocolate chip cookies). You won't have to worry about not having treats . . . you'll just have to worry about hiding them from your family so they won't eat them all!

Good luck!

[kbabe1968]

THANKS! That's a big help.

It's becoming a bit of a daunting task, i guess I thought - no bread, no crackers and I'd be fine! I didn't realize just how pervasive gluten is! I'm even having to dump some of my vitamins b/c they are not gluten free! AHHHHH!!!

It's going to be a process to get completely gluten free in our house, but we are working on it. Thinking I still want to get the kids gluten free too. My middle son has som ADHD tendencies that I'm wondering if gluten is to blame. Hmmmmm....

Anyway...THANKS all, I'll be on here a lot for sure!

[happygirl]

kbabe,

Welcome to the board! I am happy you have found us!

I didn't find this board til "after" I got over the huge learning curve...and really wish that I had found it sooner. It is by far the best resource out there.

Read on www.celiac.com, the parent site to this forum. There is a lot of great information!!!!!!

Wheat must now be clearly disclosed on all food labels in grocery stores. That still leaves rye, barley, and malt. But if it has wheat, it will say, "Contains: Wheat" (and any other of the allergens listed in the bill passed in 2006...there are 8 main allergens).

Tinkyada is by FAR the best gluten free pasta. I tried every other kind unfortunately before finding it! It is delicious. We had home made gluten free mac and cheese the other night (I am the only celiac) and it was soooo good.

I recommend finding a gluten free flour mixture (bobs red mill, arrowhead(can't remember the name)) or some other to use as a one for one replacement in small amounts (a recipe calls for a little bit of flour, and i just use my flour). Most of my recipes are "normal" recipes that are slightly modified. I was diagnosed in graduate school at age 23 and was 2 months a newlywed, so I had no time, money, nor was I a skilled cook . So it can be done!

Many of McCormick's brand seasoning packets-particularly for mexican food-are safe. Just make sure to read the label each time as ingredients (on anything) can change! We make enchiladas, tacos, fajitas from them....I just use corn tortillas now (warm them and they work better). Most salsas are gluten free, as are veggies (tomatoes, lettuce, etc), most shredded cheeses, sour creams, etc.

Soups are hard to replace. But there are plenty of good ones. I use Progresso's "Creamy Mushroom" for a "cream of x" soup replacement. It is not thick and condensed, but I warm it on the stove, and add some gluten-free flour and stir it up til I get it a little thicker. Both my mom and mother in law used it in casseroles over Christmas (and served it to the whole family) and it was great! My family actually likes it better that way

What else do you need to "get you started?" Feel free to post and ask questions, or PM me - I'd be happy to help!!!!!

Remember to check medicines, too. I have taken One A Day vitamins and they were gluten free.

San J makes a gluten free soy sauce (and a low sodium version as well) that is delicious. They make "normal" ones too, so make sure to get the right ones.

Make sure to get yourself all new butters, mayos, peanut butters, etc because of cross contamination. Keep the old ones for people who eat gluten. Everything will need to be labeled. (If you are making a sandwich with gluten filled bread, and you dip into the mayo, spread it on the bread, then dip it back in the mayo, the mayo container now has crumbs in it. Yes, it sounds extreme, but gluten free means gluten free, not gluten lite with a few crumbs here and there.) Get some good black permanent markers to label things.

Read my "advice" listed below in my signature----it is the best thing I can tell any Celiac/gluten intolerant person. I'm extremely sensitive, and have found that following that advice keeps me healthy.

Good luck!!!!!!!!

Laura

[kbabe1968]

Thanks Happygirl! I really appreciate the help - DEFINITELY hanging onto your name for future help.

The GOOD thing, in our house is that our kids are used to mom and dad being "fresh" and we try to get organic when possible. They've already had brown rice pasta with no questioning it or anything, so that is going to be really easy on them. We lived in Phoenix for a few years and learned a lot about healthy eating. They are also pretty adventurous foodwise (my 7 year old LOVES sushi!)

It's going to be the bread, cookies, etc. Learning to bake gluten free is going to be of utmost importance. I baked off the rest of our gluten cookies from Christmas last night and I noticed that my hands broke out! I had never noticed that before. It was interesting, though. I just NEVER thought of it.

Granted, i haven't been officially diagnosed, but the blood tests were inconclusive. They wanted to do the upper GI to confirm (that led me to believe that he thought I do have it based on the blood tests, but he wanted to be sure by doing the gi tests). We just can't afford it. And with 5 months of no improved health doing other things...we decided to try the gluten free. They did diagnose me with Fibromyalgia which witha ll of our info lately we are seeing how related they can be. The funny thing is my mom, the total skeptic on every thing saw an clip on the news a couple months ago about Celiac and told me to go check it out b/c it sounded a lot like me and my symptoms! LOL Living gluten free with them around is going to be fun!

We don't eat out too horribly often, usually. It's been bad this season because I'm busy doing other things so I rely on takeout! BUT, thats at an end. I love my hubby, he said, lets not look at what you can't have, but what you CAN have. And we sat down and listed out all the things I love that I can still HAVE. I think that we're going to skip eating out for a while to get used to it all. AND, if he gets takeout - I'll just make something for myself and he can buy for them.

I think I mentioned earlier that my son shows some real signs of ADHD that I am beginning to think are celiac related. he's never been tested. I'm hoping to convert the whole house gluten free and see how he reacts too. He's going to be a little difficult b/c he is a carbo loader! He loves his bread! And cereal in the a.m. That's going to be hardest on him...so that's going to have to phase out slowly so he doesn't really notice. Hoping to get a breadmachine that maybe I can learn to bake my own gluten free bread BUT I know that expenditure won't happen until we are SURE that I get better by eating gluten free.

AHHHHHH!!!!! Why did I start looking into this! LOL

Anyway, thanks again! I'll be bending your ear a lot!!!