Diagnosed Today, Don'T Know If I Can Stick To Diet...

[Chrisco]

I have finally been diagnosed with Celiac today. I say finally because it's been a very long road. My Doctor was sure that I had Celiac how ever my blood test was negative so she sent me for an endoscopy because I have a B12 deficiency and some other things showed up in my blood work that made her sure it's Celiac. I had the endoscopy however the Doctor did not biopsy my small intestine like he was supposed to. It is so frustrating because I spoke with him at the consultation and told him my general doctor thinks I have Celiac and wants me to be tested for it. He tried to convince me that it couldn't be Celiac cause my blood tests were negative. So maybe he didn't do the biopsy because he didn't want to be proven wrong. Needless to say I am very upset about it since I had a procedure done for nothing. Anyway my general Doctor sent me for another blood test to see if I had the genetic marker which I do. So she feels that since everything else is pointing to Celiac that that is what I have. She wants me to follow the diet. If I am not seeing results in a few months then we are going to re-evaluate. I am also convinced that it is Celiac. I have tried to follow the diet before and failed. I am a junk food junkie and eat out a lot. I know that this is what I have to do to feel better but I have no idea how to do it. I have bought gluten free products in the past but they were not good. My biggest struggle is going to be lunch. I love sandwiches. I would appreciate any advice on how to start the diet and what kind of bread, crackers, cookies are good.

[ravenwoodglass]

The best way to start is with whole unprocessed foods. You will heal fastest that way. One reason you may be having trouble with sticking with it is because for some of us gluten causes an addictive effect in our brain chemistry. This can cause withdrawl with irritability and moodiness but that will pass. For me it took about 2 weeks. Even a small amount can 'reactivate' the addiction factor. As with someone with alcoholism or fighting to get off tobacco it is very important not to cheat as that will prolong the withdrawl

Everyone is different with their tastes but for me The Grainless Baker and Kinnickinnick are my favs for ready made bakes goods. Gluten free pretzels are very much like gluten ones so they were one of my favorite snacks in the beginning. The Gluten Free Pantry makes a French Bread mix that makes a good pizza dough if you crave pizza. It is a loose dough and you need to spread it with a spatula. I usually stick it in the fridge to help make it easier to spread.

You can do this, it is hard at first but the changes in your physical and mental health make it well worth it.

[CeliacMom2008]

Udi's bread is fantastic. It tastes very close to gluten bread.

Pamela's chocolate chunk cookies are my favorite

Nutthins crackers are very good - try a couple different kinds because they vary greatly. My son loves the cheddar (which are just "OK" to me). I love the smoked almond (which my son doesn't care for at all).

Pamela's pancake mix is excellent and we love PB&J sandwiches made with the pancakes.

Betty Crocker has 4 gluten-free mixes that are great and available in many areas

Whole Foods 365 chocolate chip cookies mix is really good if you have a whole Foods by you

Gluten Free Sensations chocolate chip cookie mix is fabulous, but a little pricey

Joan's Gluten Free Bakery has incredible bagels and english muffins, but shipping is high so you really need to try to max out the order to get the most bang for you shipping buck (the plain english muffins make great tuna melts)

Annie's mac & cheese in a blue box tastes just like the Kraft blue box mac & cheese if you're into that

Amy's frozen mac & cheese tastes more like homemade mac & cheese

If you want to make the diet work you can. For us it isn't that big of a deal. Our household is 99% gluten-free and our son is the only one with Celiac. We really don't miss much from the gluten world. Eating out is the hardest, but many do it very regularly.

Good luck!!

[Reba32]

I'll second the suggestion to just go with whole natural foods for the first couple of weeks. Don't try the packaged gluten free alternatives to what you normally eat for a while, until your body has started to heal itself. Everyone is different, that may be a couple of weeks, it may be a couple of months (complete healing may never happen).

I eat very few packaged or manufactured foods. I eat a lot of meats and veggies that don't come out of a box or plastic bag. I make my own baked goods, including cookies, cakes, yogurt and puddings. I use almond flour and coconut flour for baking, and flax meal for breakfast "cereal" and muffins.

I seriously DO NOT miss gluten foods at all. They made me feel like crap for decades. I feel so much better now all I have to do is remember the 8 weeks gluten challenge and how bad I felt. Then I have a pickle.

[GFinDC]

I suggest you start by eating lots of rice. Learn to cook several versions with veggies and chicken or hamburger etc. You can make large batches and freeze some of it for later. You can eat Mission brand corn tortillas also, or get Enjoy Life rice wraps at Whole Foods or elsewhere. Also search for breakfast ideas here or check the recipe section for ideas. Betty Crocker gluten free cake mixes are good and reasonably priced. I suggest you avoid soy and dairy to start also. Fruit and veggies are good snacks.

[luvs2eat]

I don't have access to Whole Foods (or Trader Joes or ANY stores that carry neat gluten-free stuff), so I order Pamela's bread mix from Amazon. I also order my Tinkyada pasta from there too. Ordering both at the same time makes shipping FREE! I know you can order Udi's bread, but I hear it's expensive!

A loaf of Pamela's bread makes awesome sandwiches. I toast the bread first and sammies hold together (you know what I'm talking about if you've tried to make a sandwich w/ a lot of gluten-free breads... they totally crumble!). I usuallly slice and package the bread in 2 slice packages and freeze 'em. You can also use the mix to make some pretty good bagels.

Nut Thin crackers are good. Before those, I always used the Chinese rice crackers usually available in most regular groceries.

Keeping to a gluten free diet is hardest for those who don't cook or don't like to cook and those who eat out a lot... cause eating out is difficult. Plus, the stuff you can order online is pricey. That's why you have to embrace cooking. If you do... then the diet is not hard... challenging sometimes, but not hard.

And you know you HAVE to stick to the diet... difficult or not. It's the only treatment and the only thing that will make you feel better and allow your body to heal.

Just learning how to cook a little differently, you can have:

Meats

Veggies

Fruits

Rice/other grains

Pancakes/waffles

cookies/cakes/bread

... and just about anything else you want. If you google "gluten free anything" you can find a recipe for just about anything! What ya can't have is prepackaged junk food. Ya just can't.

Good luck!!

[wjp]

I have finally been diagnosed with Celiac today. I say finally because it's been a very long road. My Doctor was sure that I had Celiac how ever my blood test was negative so she sent me for an endoscopy because I have a B12 deficiency and some other things showed up in my blood work that made her sure it's Celiac. I had the endoscopy however the Doctor did not biopsy my small intestine like he was supposed to. It is so frustrating because I spoke with him at the consultation and told him my general doctor thinks I have Celiac and wants me to be tested for it. He tried to convince me that it couldn't be Celiac cause my blood tests were negative. So maybe he didn't do the biopsy because he didn't want to be proven wrong. Needless to say I am very upset about it since I had a procedure done for nothing. Anyway my general Doctor sent me for another blood test to see if I had the genetic marker which I do. So she feels that since everything else is pointing to Celiac that that is what I have. She wants me to follow the diet. If I am not seeing results in a few months then we are going to re-evaluate. I am also convinced that it is Celiac. I have tried to follow the diet before and failed. I am a junk food junkie and eat out a lot. I know that this is what I have to do to feel better but I have no idea how to do it. I have bought gluten free products in the past but they were not good. My biggest struggle is going to be lunch. I love sandwiches. I would appreciate any advice on how to start the diet and what kind of bread, crackers, cookies are good.

I understand what you are going through. I was diagnosed about 6 weeks ago. Same thing - negative blood test, then test genetic marker - it's there. Since I have been going to the doctor for a year with various symptoms I was greatly surprised to find out it was Celiac. After just a few days of gluten free I saw a lot of the symptoms go away, have accidentally gotten gluten maybe twice since and instantly symptoms come back, so I'm convinced that I will be living a gluten free life. Just take one day at a time, try some of the suggestions others have listed. Betty Crocker has some products that are good and I agree that rice crackers are decent. Reading the forums that are on the internet is a great way to get suggestions. Good Luck!!!

[Chrisco]

Thank you so much for the suggestions. My husband is going on the diet with me so we will be converting our home to a gluten free one. It's going to take a little bit of time because he needs to eat all the gluten containing food first but we'll get there eventually. I started the diet yesterday and I'm already feeling better. I went to Whole Foods and was so overwhelmed. I bought some gluten free products and they did not taste good to me. I'm glad to hear there are products out there that people enjoy eating. We are sticking to meat & rice for dinners. Lunch is my biggest obstacle. But I will survive on rice cakes and yogurt for lunch until I figure it out. We eat a lot of asian food so we already eat a lot of rice. I also bake a Japanese desert that is called "Mochi" which I love and it is made with "Mochiko" rice flour so it is gluten free. I am going to bake it a lot to help with my sweet food cravings. I am so glad that I found this website. Reading about everyone's experience and getting advice has been so helpful. Again thank you so much.

[CeliacMom2008]

Here are some lunch ideas...

Hard boiled eggs/deviled eggs

tuna fish salad with chips (use the tuna salad like a dip for the chips)

fried rice (from left over rice)

stew (from left over pot roast and veggies)

mac & cheese (Amy's frozen)

For that matter, any of Amy's frozen dinners

PB&J on pancakes (great for leftover pancakes)

canned turkey drained and mixed with ranch dressing (dip for chips style)

make a pan of lasagna, cool in fridge, and then cut individual pieces and freeze them

pulled pork (we don't do buns here, just eat with a fork) (make a big batch and freeze)

sloppy joes (again, we don't do buns)

cheese sticks

nut thins crackers

lunch meat rolls

fresh veggies

fresh fruit

yogurt

crepes rolled up ham and cheese slices (again think "left overs" - make your crepes on Sunday and you have lunch for Monday and Tuesday kind of thing)

tuna casserole leftovers

simple pasta salad (noodles of choice, tomatoes, cucumbers, carrots, cheese cubes toss with Italian dressing)

Green Goddess veggie dip and tortilla chips (search on forum for recipe)

scrambled eggs in a thermos

Lunch doesn't have to be boring!

[AKcollegestudent]

Thank you so much for the suggestions. My husband is going on the diet with me so we will be converting our home to a gluten free one. It's going to take a little bit of time because he needs to eat all the gluten containing food first but we'll get there eventually. I started the diet yesterday and I'm already feeling better. I went to Whole Foods and was so overwhelmed. I bought some gluten free products and they did not taste good to me. I'm glad to hear there are products out there that people enjoy eating. We are sticking to meat & rice for dinners. Lunch is my biggest obstacle. But I will survive on rice cakes and yogurt for lunch until I figure it out. We eat a lot of asian food so we already eat a lot of rice. I also bake a Japanese desert that is called "Mochi" which I love and it is made with "Mochiko" rice flour so it is gluten free. I am going to bake it a lot to help with my sweet food cravings. I am so glad that I found this website. Reading about everyone's experience and getting advice has been so helpful. Again thank you so much.

I can't stress enough that it would be wisest to go off of soy and dairy as well to begin with. I didn't until the hives (from dairy) showed up, and unlike many who end up being able to go back to dairy, it looks like my issues are here to stay.

I love Mochi as well--do you have a recipe for it or do you buy it in sheets? (I bought the sheets for a while, but just didn't have great success with them.)

And I caution you against gluten free products right now--it took the better part of six weeks before anything gluten free actually tasted good to me, even the products that I really like now.

[juppygirl]

I was officially diagnosed 8 years ago but they didnt tell me and I finally found out last august after developing the associated rash Dermatitis Herpetiformis and I am really relieved to finally find out what is going on and that I am not going completely crazy

[Reba32]

diagnosed 8 years ago and no one told you? How the heck does that happen?

[AKcollegestudent]

diagnosed 8 years ago and no one told you? How the heck does that happen?

Probably something similar to how I went 10 years between it being noted in my chart and someone actually realizing that, "Huh. There's a notation for celiac in your chart."

"Yeah, I was eight. They treated it for a while, but it went away."

"Why aren't you still gluten free?"

"Am I supposed to be?"

Mostly, I'm convinced that doctors don't pay any attention to their own notes.

[nixie-nox]

I think you have to view gluten free foods the same way I tell people to view vegan foods.

I know some vegetarians and when people try meat free products they usually turn up their nose. This is the same reason many people fail a vegetarian diet.

It is the mind set. I said you have to view it as a whole new ethnic form. Stop trying to replace foods you know with a strange substitute. And view it as your experience cuisine from another culture for the first time.

The same is going to have to be the same with gluton foods. Stop trying to compare it to what you KNOW and THINK it should taste like. And try it as if you have nothing to compare it too.

I have had gluten free products that I think are even better then the original. The mindset needs to be changed.

Things change and are never the same again.~who moved my cheese

[kareng]

I'm just starting the gluten-free life. I have tried stuff I compare to the kind full of wheat. I think that if I wait a few weeks, I'll like it better because I won't be comparing it to regular. I found a local gluten-free bakery that makes Cinnamon aplle donut holes that are better then any wheat filled kind I've had. Plus, lots of stuff you already eat or make are gluten-free or easy to fix as gluten-free. Example: My chili - have to not use the prepackaged chili seasonings. we'll just experiment.

What's Mochi? Do you have a recipe? My hub & I are using this as an excuse to be brave & try new foods.

[juppygirl]

I had skin tests 8 years ago that were 'inconclusive' as I wasnt having stuff I had problems with - they said it was not a problem but I insisted that I had problems with wheat and they said they would give me some stuff on prescription to help me -but later must have decided to put Coeliac on my notes in order to give me the scripts and never told me. I then developed the DH rash last summer and have very sensitive celiac disease as well

[boysmom]

I've found Pamela's Pecan Shortbread cookies to be every bit as good as their gluten counterpart. They are slightly crumblier, so instead of dunking I take a bite and a sip and soak it in my mouth

Some of my favorite quick lunch ideas:

A slice of gluten-free lunchmeat spread with hummus and wrapped around a baby carrot and stick of swiss cheese

carrots dipped in hummus

cheese sliced melted on sesame rice cake

1/2 tomato with cottage cheese (used to LOVE this, but now I can't do tomatoes... someone may as well enjoy it lol)

cottage cheese with fruit stirred in

yogurt with a bit of honey and vanilla or fruit and gluten-free granola

Tuna Salad with rice crackers

Sandwiches are easy, but there are other easy options that will add variety and interest to your meals. I have yet to find a gluten-free bread I like (very limited options in our rural area) and it takes too much time and effort for us to make it ourselves often, so it's an occasional treat here rather than a staple now.

I have found the adjustment to the diet to be MORE than worth the effort. By the time I was finally diagnosed I was so sick all I could eat was eggs, yogurt, bananas, and oatmeal and even that upset my stomach. Symptoms that had accumulated over 30 years and I thought were mostly just aging issues are GONE! I feel better now than I did when I was in college.

[DiscGolfer]

What an amazing forum this is. A newcomer to a club that no one wants to be in asks for help concerning a new diet and lifestyle and you folks greet her with open arms. What an amazing resource all of you are. I wish y'all were available to me (and my mom) in my early years of gluten free living. This kind of support is present on every thread on this board. It truly is like a family and one that I am now proud to be a part of. I've just been poking my way through my first 37 years of gluten free living- trying to survive the best I could. I have never, purposefully, fallen off of the wagon as it is just not worth the consequences- but, enough things slip by me from time time to remind me of just how sensitive I am.

Speaking of sensitive... I actually started to cry as I read all of your replies on this thread. I was so happy to see how y'all were coming to the rescue of someone who was facing her first challenges in a gluten-filled world. What a blessing!

[Jestgar]

What an amazing forum this is. A newcomer to a club that no one wants to be in asks for help concerning a new diet and lifestyle and you folks greet her with open arms. What an amazing resource all of you are. I wish y'all were available to me (and my mom) in my early years of gluten free living. This kind of support is present on every thread on this board. It truly is like a family and one that I am now proud to be a part of. I've just been poking my way through my first 37 years of gluten free living- trying to survive the best I could. I have never, purposefully, fallen off of the wagon as it is just not worth the consequences- but, enough things slip by me from time time to remind me of just how sensitive I am.

Speaking of sensitive... I actually started to cry as I read all of your replies on this thread. I was so happy to see how y'all were coming to the rescue of someone who was facing her first challenges in a gluten-filled world. What a blessing!

And thanks to you for joining in as part of the rescue team.