Newly Diagnosed - Can Anyone Offer Guidance?

[StephHappens]

Hi Everyone,

I was diagnosed with Celiac Disease right before the new year. I had a positive blood test followed by an endoscopy that showed severe damage. I spent a few days having a "few last meals." Then, I became gluten free on January 1st. However, I am struggling because my gastroenterologist told me, "You are very smart. Just stop eating gluten.You will be fine." He handed me a two page handout on Celiac Disease and sent me on my way.

Should I see a nutritionist? Does anyone know of any good cookbooks with pictures? The pictures are very important because I need to see what the food is supposed to look like!

I am a serious foodie, although I don't cook - I just eat! I am struggling with my identity now (at 29 years old) because I have always been "the girl who could eat anything and pack away the food." My friends would always joke that something had to be wrong with me because I could eat enormous amounts of food and remain slim. Turns out they were right! I love the Food Network, but now I watch it and get sad.

I am feeling very awkward about eating out because I feel like a burden. I feel like I am annoying the servers and I hate having to explain my condition. I am always VERY nice and appreciative (I used to be a server at Outback Steakhouse in college). Is all this normal?

It has only been 2 weeks and I have accidentally glutenated myself once (although I am still not sure how). I am going from loving food to being scared to eat unless it is raw food or "gluten free" is printed on the package. Will this get better?

Oh yeah, I feel like I am going crazy, too. I told this to my doctor before being diagnosed. I am having memory loss, forgetfulness and trouble recalling words and events. My balance is off, too. Dr. didn't seem too concerned, but that was before diagnosis. Since diagnosis he hasn't brought it up. I see doctor again on Feb 2nd (I think). What should I do about this?

Thanks for reading!

[eatmeat4good]

Hi,

Welcome. I can relate to what you are feeling and it does feel like a different world. I too, get sad watching the Food Network now. I wish they would do a show on Gluten Free cooking as many people would find out they have this.

I want to comment on your last paragraph. Gluten can make you have balance issues and "feel crazy". It may be a bit too soon for the gluten to be out of your system and you may still be having reactions. It should improve with time if it is related to gluten.

I haven't had great luck eating in restaurants. It is going to be an adjustment for you with your identity being the girl who could eat everything, to the girl who has to be really careful about what she eats. The payoff is that you get to feel better. Your feelings about this are normal and it will take time for you to adjust. I have only been gluten free for 4 months and still struggle with my identity as I used to be a really good cook and made homemade bread. Turns out everything I did in the kitchen included gluten. Having said that, it can be kind of fun to learn to cook. I am re-learning. I too had the feeling of being scared to eat. Like every meal was an experiment to see if I would make myself sick or not. This too eases up as time goes by. However, the grocery store still gets me. I see all the loaves of bread and feel absolutely ill that gluten steals so many years from people's lives and yet they still just sell thousands of loaves of bread as if nothing is wrong with it. I wish bread wrappers had to have Celiac information on them.

Remember you are only 2 weeks into your new life. It will get better. There are a lot of cookbooks and the recipe section here is very good. I like Elena Amsterdam's cookbook, The Almond Flour cookbook. She also has a website that has recipes.

I haven't seen a nutritionist so I don't know about that. It might be helpful. What I do know is that the vitamin deficiencies are an important part of your recovery and you need to take supplements. If you are low on B vitamins it can cause depression and anxiety and if you haven't had your vitamin levels checked, maybe that is something you could ask for at your next appointment.

I hope you start feeling better soon and I hope you are excited to learn how to cook.

Other's will have good information for you too.

I'm glad you found out what is wrong and maybe your friends will be trying your gluten free cooking soon!

[GFinDC]

It is good to start with a whole foods diet. Learning to cook is pretty important if you are going to be gluten-free. Making you own food will help you identify ingredients that cause problems too. Basically avoid anything in boxes for awhile, or pre-made meals. Once you have the hang of eating gluten-free and cooking your own food, you can experiment with trying processed foods (gluten-free). Some people have problems with dairy and soy so it might be good to do a trial elimination of them to see if you feel better. Eating simple whole foods at home is a good way to start.

[T.H.]

However, I am struggling because my gastroenterologist told me, "You are very smart. Just stop eating gluten.You will be fine." He handed me a two page handout on Celiac Disease and sent me on my way.

Should I see a nutritionist?

If I were you, I'd see a new doctor and THEN see a nutritionist. My first gastro did the test, said 'you have celiac disease. you have to go gluten free. Here's a nutritionist you can see.' and that was that.

I went on-line, found out how much can be problematic in newly diagnosed adult celiacs, and I went and hunted down a better gastro (I checked with my local celiac support group and found who THEY recommended in town). My new gastro did TONS more tests, including for vitamin and nutrient deficiences, Crohn's disease, thyroid issues, food allergies, pancreas function...there's a whole host of things that are more likely in adults who have been diagnosed, because they've had the disease for longer and more damage could have been done during that time.

And he recommended a better nutritionist, too.

You CAN do this diet without a nutritionist, but it can be nice to have someone help you with a diet when you have to work out so much all at once, you know?

Does anyone know of any good cookbooks with pictures? The pictures are very important because I need to see what the food is supposed to look like!

I actually had much better luck with gluten free blogs than I did with cookbooks - they always have pictures, you can search for the recipes based on your ingredients (recipe+gluten free+ your ingredients], and frankly, they seemed more likely to to be GOOD. The cookbooks always seemed to have a few good recipes and lot of 'so-so' ones. The bloggers have been more consistently good, in my experience. They have some amazing gluten free recipes.

For some foodie recipes that use more basic ingredients, I always liked 101cookbooks.com - she has a gluten-free recipe section that was very tasty. Glutenfreegoddess is another popular one, so is glutenfreegirl - although many of hers were more complicated than I felt capable of in the beginning...or even now, LOL. But they always looked wonderful. :-D

I love the Food Network, but now I watch it and get sad.

Hopefully that will fade. After a few months, I found out I was actually watching more of the food network for ideas! Before, I would watch and think: that looks really good. But I'd never think to make it. But now, I watch it and like it and try to imagine how I COULD make it, because it'd usually be cheaper for me to make it than buy it gluten free.

I am feeling very awkward about eating out because I feel like a burden. I feel like I am annoying the servers and I hate having to explain my condition. I am always VERY nice and appreciative (I used to be a server at Outback Steakhouse in college). Is all this normal?

Oh yeah, it's normal. My father has been gluten-free for 9 years and he still hates to talk about it. I have myself and 2 kids who are all gluten-free, so I've had to be more aggressive about it from the get-go. There is some good advice from foodies who have to live gluten free, or with allergies, but like to go out. One I remembered was that the following can help.

1) call ahead and talk to the manager about what your needs are, and if they can accommodate them. That way, when you get there, you don't need to go into everything right then. YOu just mention who you are, that you spoke on the phone, and everything is all set.

2) if you can, go at less crowded times. You're more likely to get safe food if they are not trying to make your order during a rush.

3) It can help not feel like a burden when you make sure to call ahead, I've noticed. Because if I am clear what i need, and I ASK if they can do this...then they've made an agreement. If they act like I'm putting them out after that, they brought it on themselves, you know?

It has only been 2 weeks and I have accidentally glutenated myself once (although I am still not sure how). I am going from loving food to being scared to eat unless it is raw food or "gluten free" is printed on the package. Will this get better?

Yeah, it will. And actually, that's not a bad thing to start off with. The less processed food you eat at first, the more you can be sure you're 'safe' in the beginning. Something you should know: gluten free does not mean 'no gluten.' It means 'below an agreed upon gluten level' which tends to be 20ppm in the USA. Although we have no law dealing with that, yet. And as we all have different tolerance levels for gluten, you may find that you can only eat so many gluten free products that are grain based in one day. My father, for example, can pig out on gluten-free brownies and cookies and such, no problem. My daughter can have 1 piece of gluten free pizza crust and then if she has more within 24 hours, she'll be sick.

You'll figure out your own tolerance pretty quick. But eating fruits and veggies, and paying attention to labels, is a good way to start off and be safe. You get to know what foods and brands are higher risk, and what seem to always be safe (like nuts can be a cross-contamination risk - often you'll find a 'processed with wheat' on nut packages).

And re: the getting glutened?

Two things that might help in the beginning.

1) remember that ANYTHING that gets in your mouth can gluten you. Including chapstick and lipstick, your significant other's kisses, shampoo that washes down your face and might get in your mouth, lotion on your hands if you chewed on your nails afterwards, toothpaste - food isn't the only thing that we put in our mouths, ya know? That's always a good thing to check out.

I am having memory loss, forgetfulness and trouble recalling words and events. My balance is off, too. What should I do about this?

You have just described me pre-gluten free. That has significantly decreased the more I've gotten rid of gluten. It involves the brain, however, so it can take longer for the brain to heal up than the gut. You'll need to give it some time, but it's likely these will improve. However, if they don't, you'll want to try and find a neurologist who is familiar with 'gluten ataxia.' Not all are.

And if you have this, you may be like myself (and my daughter) and a few months into the gluten free diet, the memory issues and balance trouble can become a symptom of getting glutened. Annoying, but very definitive!

Wishing you well on the diet, and being gluten free! The first few months are the hardest - trying to figure everything out and what we can eat.

For some quick food ideas that might help out:

- check out flatbreads. Many cultures have non-wheat flatbreads that are very tasty! Although you tend to have to hunt down traditional flat bread recipes. Most of the modern ones add wheat because it's easier to handle.

- soups are wonderful. Just pop in some chopped meat, some veggies, and let it simmer until you've got a nice broth, ya know? It's not the greatest tasting unless you're a great chef, but it can be filling and easy when you're trying to get a handle on things.

- baked potatoes with grilled veggies, beans, sauteed mushrooms...good carbs and lots of options. And quick and easy.

- if you are having a lot of rice and are getting bored of it - quinoa works well too (if you aren't familiar with this). It tastes all right added to soup, too.

- If you get some gluten-free soy sauce, it's a quick and easy stir fry to just use it with garlic and any veggie in existence, served over rice. If you add a bit of agave syrup to it and true rice wine, that does nicely, too.

Hope that helps a little. :-) Good luck!

[Skylark]

Hi Everyone,

I was diagnosed with Celiac Disease right before the new year. I had a positive blood test followed by an endoscopy that showed severe damage. I spent a few days having a "few last meals." Then, I became gluten free on January 1st. However, I am struggling because my gastroenterologist told me, "You are very smart. Just stop eating gluten.You will be fine." He handed me a two page handout on Celiac Disease and sent me on my way.

Should I see a nutritionist? Does anyone know of any good cookbooks with pictures? The pictures are very important because I need to see what the food is supposed to look like!

You can try a nutritionist. To be honest, I mostly use regular cookbooks. There are plenty of naturally gluten-free recipes in most cookbooks. There are great lists of OK ingredients and gluten ingredients on celiac.com.

I am a serious foodie, although I don't cook - I just eat! I am struggling with my identity now (at 29 years old) because I have always been "the girl who could eat anything and pack away the food." My friends would always joke that something had to be wrong with me because I could eat enormous amounts of food and remain slim. Turns out they were right! I love the Food Network, but now I watch it and get sad.

As I like to tell friends who ask how I stand my diet that caviar, foie gras, champagne, and truffles are gluten-free. There is SO much good food we can eat! I spent the afternoon today cooking up a batch of Indian curried lentils with rice cooked in coconut milk.

I am feeling very awkward about eating out because I feel like a burden. I feel like I am annoying the servers and I hate having to explain my condition. I am always VERY nice and appreciative (I used to be a server at Outback Steakhouse in college). Is all this normal?

Yep. Sometimes I feel like a scene from "When Harry met Sally". I mostly stick to restaurants with gluten-free menus like P.F. Chang and Outback. As you know from being a server, you'll go the extra mile for someone who is kind and appreciative when they ask for something special. You can always tip extra if you get a great waitperson.

It has only been 2 weeks and I have accidentally glutenated myself once (although I am still not sure how). I am going from loving food to being scared to eat unless it is raw food or "gluten free" is printed on the package. Will this get better?

I personally don't believe processed food in general is a good idea for celiacs. I've gotten sick every now and than for no good reason and it has stopped happening now that I am eating mostly home-cooked, naturally gluten-free food. I've rediscovered my love for cooking in the past year since I realized I was reacting to even small traces of gluten.

Oh yeah, I feel like I am going crazy, too. I told this to my doctor before being diagnosed. I am having memory loss, forgetfulness and trouble recalling words and events. My balance is off, too. Dr. didn't seem too concerned, but that was before diagnosis. Since diagnosis he hasn't brought it up. I see doctor again on Feb 2nd (I think). What should I do about this?

Thanks for reading!

Balance problems are likely a disorder called gluten ataxia. It's when the autoimmunity attacks your brain. It should go away after you've been gluten-free a while if that's what is going on. Your Dr. may not have heard of it because it's a pretty new discovery. With the forgetfulness, ask your Dr. for a test for B12 deficiency. There is no harm in picking up a B-complex supplement. A lot of us take 1000 mcg of methylcobalamin (a kind of B12) since celiacs seem to be short of it.

Hope this helps, and feel free to ask more questions!

[Monklady123]

What they all said above. lol...

I'm pretty new to this myself -- since the end of the summer. The biggest eye-opener for me, after that initial "omg, what can I eat?" question, was to realize that in its natural state MOST food is gluten free. Meat, vegetables, fruit, dairy, potatoes, beans, rice, other grains... all of that is gluten free. It's really a small percent of food that has gluten.

Now that said, it is a large percent of what we eat, if we like bread and pasta. But you'll learn which bread and pasta you like (personally for me it's Udi's bread and Trader Joe's pasta), and you'll see that cooking is easy. (I hate to cook, but that doesn't mean it isn't easy, lol.)

However, it's the processed food that all seems to have wheat in it and that's where the problems happen. And that's why eating out is so difficult.

I've found that for me the key to eating out successfully is to investigate ahead of time. So I checked into all the restaurants that I go to regularly (which in my case wasn't a lot). I looked at the menus on-line then called and talked to the manager. This worked for me because I almost never go out on the spur of the moment.

But for some people that spur-of-the-moment thing happens a lot. I remember when I was younger (pre husband and kids) and working in a downtown area we often went out after work. So I think if I were in that situation now I'd just have to research all the places nearby work that we might go to. Being prepared is the key.

It will get easier, although maybe never easy. The thing that helped me the most was finding substitutes for bread and for sweet things, like Gluten-free brownie mix, or Betty Crocker's Gluten-free cake mix. I've never eaten a lot of that sort of thing, but when I want it I'm happy to have it available.

:wub: Betty Crocker :wub:

edited to add that I've just noticed that when I type in the letters "g" and "f" it auto-corrects to say "Gluten-free". rofl...

[StephHappens]

Wow! I have learned so much from reading your responses. Thanks for taking the time to respond. I will take advice from each of you and if I have more questions, I will surely come back! I appreciate it so much! Maybe one day I will be able to help others, too!

Thanks all!