Just Diagnosed

[jess-gf]

Hi,

I am 28 and for years I've always had stomach "issues" that I just chalked up to stress. This past year though it was getting steadily worse, and for the past couple of months I was having stomach pains and nausea every day, all day long.

Yesterday I had an endoscopy and biopsy and my GI specialist said that I have Celiac Disease. I'm starting my research on it and I am feeling completely overwhelmed. A few hours ago I went through my cupboard and cleaned out everything containing gluten... not much left! I love to drink tea and now that I know that some tea bags are sealed with wheat paste I don't even feel safe drinking that!

I am also concerned because I've been meat-free for about 10 years, but I am not sure I can continue to be and still be healthy with my diet so restricted and so many non-meat sources of protein having to be taken out.

I'm not really sure where to go or what to do or how to start. There's just so much to research and recipes to find... and the holidays! I am supposed to bring something for thanksgiving dinner next week and I haven't the foggiest on what to make, considering whatever I make might be the only food option I can eat there. Eeeeek!

When someone first learns that they have Celiac, what are the first things they should do? Do I need to start eating meat?

[GFinDC]

Hi,

Welcome to our glorious club of gluten freedom fighters! Really, if I was you, I'd forget about doing the gluten-free diet until after Thanksgiving. Then start and go from there. As far as eating meat goes, I'd say yes, eat the meat. Celiacs have a hard enough time absorbing nutrients that some rich protein can be a help. I have been taking vit D pills for a couple years and the doc says I am still low on it.

[Skylark]

Hi there. Don't panic.

For starters, you can fish your teabags out of the trash because the wheat paste thing is an urban legend. You do need to replace your cutting board, since it's hard to clean well, any wooden spoons, and perhaps your colander. If you have a vertical toaster you can't clean really well, you'll need to replace that as well.

You have not had many non-meat sources of protein taken out. Just the various fake meats and seitan. I've actually been moving away from meat myself and I've been gluten-free for years. You can still eat tofu, tempeh, eggs, nuts, seeds, beans, and dairy once you're sure you tolerate it. Now, if you end up sensitive to soy and/or dairy like some celiacs you might find it easier to add some meat to your diet. We also tend to be low on B12 so be sure you're taking some if you weren't already.

Start really simple at the store. Remember, most natural, whole foods are gluten free. Get some fruits, veggies, beans to cook, tofu, rice, eggs, and potatoes. Herbs and spices are fine, as long as you stay away from the seasoning mixes. If you have somewhere in town that carries Udi's bread, buy a loaf. It's really good. You WILL have to cook more than you might be accustomed to. I usually do pots of homemade bean soups on the weekend, or baked rice penne that I can cut up and freeze to take for lunch at work. I have a rice cooker too, and I almost always have some leftover rice around to eat with whatever I'm cooking.

For Thanksgiving, I assume you're skipping the turkey. I might volunteer to bring more than one thing, so that I enjoy the meal more. I often make garlic mashed potatoes or twice-baked potatoes, a cooked vegetable, and some baked apples with cinnamon. I could eat that happily enough with no other foods. Cornbread stuffing is another good thing to make, though I usually make mine with sausage and chicken broth.

Hope this helps, and ask as many questions as you need. Above all, don't panic. Lots and lots of foods are naturally gluten-free and you'll start remembering how many when you head for the produce aisle in the grocery store.

[sahm-i-am]

Hi jess, and welcome! It can be so overwhelming - I remember when I was first told to go gluten-free after my endoscopy I was having a dinner party that night at my house! Don't expect to learn it all overnight. I am gluten-free for 7 months and I'm still learning. There are so many wonderful people on this site and you will learn more hear than from any doctor.

You don't have to eat meat to be a healthy Celiac. There are so many other ways to get protein in your diet without that. Sorry I can't offer specific advice, but I'm sure others will chime in with more knowledge than I have on that subject.

For Thanksgiving you could take a sweet potato dish to share or even pick up some rolls for the others. What about a fruit salad or veggie plate? But I would recommend making a plate of food at home for you to eat at their house. That is what I'm doing: I'm making my traditions that I love to eat and taking them with me to each family we are visiting. That way I can still have the foods I love and not feel deprived AND not worry about getting gluten in my diet.

Don't think about what you can't eat any more - think about what you can still eat! There are so many options! Good luck and have a great Thanksgiving.

[jess-gf]

Thanks for the responses so far!

My brain is telling me that I ought to eat meat since I do have problems with dairy (and soymilk gives me gas, all brands) and even goat milk can be troublesome. I also suspect I have been malnourished because, as my hair stylist noticed, I've lost about.. 20% or so of my hair in under a year.

But my heart is saying no

I am thinking about seeing a nutritionist/dietician that is affiliated with my GI specialist.. but I'm not sure if insurance will cover that and I also don't know if she will have time for an appt before the holidays.

[starrytrekchic]

Hi! We're actually kind of similar. I was 29 last November when I found out about Celiac, after 11 years of stomach problems and a year of it getting steadily worse until it was a daily thing--and I'd been vegetarian since age 16. The first few weeks are difficult, especially trying to learn everything (you will make mistakes, but that's expected.)

I've had no problems being veggie and on the gluten-free diet. As far as I'm concerned, meat's just one less potential source of glutening that I have to worry about. Don't worry about your teabags, either--that's a myth. However, you will need to check your tea ingredients, including natural flavors. I was glutened by some Tazo green ginger tea a few weeks ago, because I never thought to check it.

Keep reading, keep educating yourself, and you'll be fine. As for Thanksgiving, try homemade mashed potatoes, a salad, pea salad, or dessert. You may need to go easy on the gluten-free replacements foods (like non-wheat flour bread) until you've healed some.

[sb2178]

If you are fine eating nuts/seeds, tofu, eggs and beans, you do not need to add in meat.

I found, after having to cut out dairy and peanut butter, that I really needed to add back in meat/fish as a regular part of my diet. (Wasn't veg, just brought up that way and rarely cooked meat at home.) Just the beans and lentils weren't quite cutting it in terms of calories and I was sick of adding olive oil in generous amounts to everything. It was also easier to digest in the beginning when I was having problems with all sorts of things.

Make sure you consume some protein on TG, whether it's a couple of hardboiled eggs or hummus or lentil salad... Definitely take your own. I'm planning to travel on Tuesday and take with me:

safe oatmeal

cornbread

apple crisp topping

cookies or brownies

trail mix

pasta

At my aunt's, they'll very carefully prepare:

crudites

steamed veg

mashed potato with turnip

turkey

Other days:

shrimp risotto

mexican pizzas (corn tortillas, beans, salsa etc)

eggs or tuna

It's entirely possible that something will become contaminated, but I'm a person without a car so taking what I'm taking is about my max. I will buy a few things there, and the bread-y foods will be made the day before the turkey.

Your insurance should cover an RD consult; if not, consider paying for it. You might be able to find someone who will take installments or who has a sliding scale if you ask around. If you can't, we here may be able to throw assorted advice in your direction. Good resources are also on GIG website as well as here.

[sandsurfgirl]

It is very overwhelming at first. I had a panic attack and ran out of the store leaving a full shopping cart behind and hyperventilated in my car the first time I shopped after diagnosis. I barely made it home from the dizziness and cried for like an hour.

In my opinion, you need to eat meat. Sorry! With dairy and soy out for you, and your body needing to heal going meatless will be very hard. Beans are going to be tough on your wounded digestive system right now and you will have a tough time getting enough protein. You will be slowing down your healing in my opinion and it's not worth it.

Eat a clean diet for the first couple of months so your body can heal. Don't go nuts eating gluten free sub foods.

If you can get one good bread, a good pasta and a sweet treat that will get you on the right path. You can venture out and try more things later.

Here are my suggestions.

Gluten Free Pantry Basic White Bread mix. Excellent taste, easy to make and doesn't fall apart. Actually makes a real sandwich!

Arrowhead Mills Gluten free all purpose baking mix for pancakes (1 cup mix, 1 cup almond milk, 1 egg, 1 tbsp oil for pancakes)

Tinkyada pasta

Betty Crocker chocolate chip cookies. MUST use real butter to make them taste good.

Here is a flourless cookie recipe that kept me going in the beginning.

1 cup peanut butter

1 cup sugar

1 tsp baking powder

1 egg

Mix and form into balls. Flatten balls of dough on cookie sheet. Bake 350 for 10 minutes until they just start to brown. Let them cool before eating or they fall apart.

Hope this helps!

For TG ask them not to put stuffing in the turkey.

[Judy3]

  On 11/20/2010 at 4:40 PM, sandsurfgirl said:

It is very overwhelming at first. I had a panic attack and ran out of the store leaving a full shopping cart behind and hyperventilated in my car the first time I shopped after diagnosis. I barely made it home from the dizziness and cried for like an hour.

In my opinion, you need to eat meat. Sorry! With dairy and soy out for you, and your body needing to heal going meatless will be very hard. Beans are going to be tough on your wounded digestive system right now and you will have a tough time getting enough protein. You will be slowing down your healing in my opinion and it's not worth it.

Eat a clean diet for the first couple of months so your body can heal. Don't go nuts eating gluten free sub foods.

If you can get one good bread, a good pasta and a sweet treat that will get you on the right path. You can venture out and try more things later.

Here are my suggestions.

Gluten Free Pantry Basic White Bread mix. Excellent taste, easy to make and doesn't fall apart. Actually makes a real sandwich!

Arrowhead Mills Gluten free all purpose baking mix for pancakes (1 cup mix, 1 cup almond milk, 1 egg, 1 tbsp oil for pancakes)

Tinkyada pasta

Betty Crocker chocolate chip cookies. MUST use real butter to make them taste good.

Here is a flourless cookie recipe that kept me going in the beginning.

1 cup peanut butter

1 cup sugar

1 tsp baking powder

1 egg

Mix and form into balls. Flatten balls of dough on cookie sheet. Bake 350 for 10 minutes until they just start to brown. Let them cool before eating or they fall apart.

Hope this helps!

For TG ask them not to put stuffing in the turkey.

Thank you for this message and the cookie recipe. I'm new to this too and the first week I was like a soldier... I CAN DO ANYTHING lol but now that the newness and maybe fear has worn off a bit, I'm needing help to find things to eat.. I know the whole foods, we were eating those before celiac came along but replacing the pasta, cereal and bread has been interesting. Rice/corn pasta ACKKK Gluten free bread (found Udi's white sandwich bread last night (will take some getting used to it melts instead of chewing it. ewww can't have the whole grain one allergic to flax ) Ahh I will survive... Lost 4 more lbs this week though and I've been eating... is that why the 'stars' go gluten free to lose weight quickly? I've lost 25 lbs in a about 5 weeks. only been on gluten-free for 2 but it's still falling off even though I'm eating now.

[jess-gf]

  On 11/20/2010 at 4:40 PM, sandsurfgirl said:

It is very overwhelming at first. I had a panic attack and ran out of the store leaving a full shopping cart behind and hyperventilated in my car the first time I shopped after diagnosis. I barely made it home from the dizziness and cried for like an hour.

In my opinion, you need to eat meat. Sorry! With dairy and soy out for you, and your body needing to heal going meatless will be very hard. Beans are going to be tough on your wounded digestive system right now and you will have a tough time getting enough protein. You will be slowing down your healing in my opinion and it's not worth it.

Eat a clean diet for the first couple of months so your body can heal. Don't go nuts eating gluten free sub foods.

If you can get one good bread, a good pasta and a sweet treat that will get you on the right path. You can venture out and try more things later.

Here are my suggestions.

Gluten Free Pantry Basic White Bread mix. Excellent taste, easy to make and doesn't fall apart. Actually makes a real sandwich!

Arrowhead Mills Gluten free all purpose baking mix for pancakes (1 cup mix, 1 cup almond milk, 1 egg, 1 tbsp oil for pancakes)

Tinkyada pasta

Betty Crocker chocolate chip cookies. MUST use real butter to make them taste good.

Here is a flourless cookie recipe that kept me going in the beginning.

1 cup peanut butter

1 cup sugar

1 tsp baking powder

1 egg

Mix and form into balls. Flatten balls of dough on cookie sheet. Bake 350 for 10 minutes until they just start to brown. Let them cool before eating or they fall apart.

Hope this helps!

For TG ask them not to put stuffing in the turkey.

Thanks SansSurfGirl! I have plans to go to Trader Joe's and maybe even Whole Foods (though they are more expensive than TJ's) today to stock up on some things. I have no clue what brands to buy and what will taste good. Last night all I could come up with to eat after the cabinet purge was some fresh broccoli and miso soup. For breakfast I had two eggs. I am eager to get gluten out of my life so that I can start feeling better!

[jess-gf]

  On 11/20/2010 at 5:10 PM, Judy3 said:

Thank you for this message and the cookie recipe. I'm new to this too and the first week I was like a soldier... I CAN DO ANYTHING lol but now that the newness and maybe fear has worn off a bit, I'm needing help to find things to eat.. I know the whole foods, we were eating those before celiac came along but replacing the pasta, cereal and bread has been interesting. Rice/corn pasta ACKKK Gluten free bread (found Udi's white sandwich bread last night (will take some getting used to it melts instead of chewing it. ewww can't have the whole grain one allergic to flax ) Ahh I will survive... Lost 4 more lbs this week though and I've been eating... is that why the 'stars' go gluten free to lose weight quickly? I've lost 25 lbs in a about 5 weeks. only been on gluten-free for 2 but it's still falling off even though I'm eating now.

I haven't lost any weight really - I've stayed about the same for years which can be a bummer when exercising and nothing really happens. But I haven't had problems with D - if anything it's C.

Is there a celiac food review source somewhere, I wonder?

[starrytrekchic]

  On 11/19/2010 at 11:13 PM, jess_gf said:

Thanks for the responses so far!

My brain is telling me that I ought to eat meat since I do have problems with dairy (and soymilk gives me gas, all brands) and even goat milk can be troublesome. I also suspect I have been malnourished because, as my hair stylist noticed, I've lost about.. 20% or so of my hair in under a year.

But my heart is saying no

I am thinking about seeing a nutritionist/dietician that is affiliated with my GI specialist.. but I'm not sure if insurance will cover that and I also don't know if she will have time for an appt before the holidays.

Don't let anyone talk you into something you don't want to do! Most people far overestimate the amount of protein needed. Unless you're eating nothing but carbs all day, I wouldn't even worry about the protein--you can get plenty from peanut butter, eggs, nuts, etc. The dairy problems are likely secondary lactose intolerance--something that will clear up a few months gluten free, once your intestines have healed more.

Give yourself a few months on the diet. Your body will let you know if you're missing anything and need to adjust your diet further by then.

[Skylark]

  On 11/20/2010 at 5:28 PM, jess_gf said:

I haven't lost any weight really - I've stayed about the same for years which can be a bummer when exercising and nothing really happens. But I haven't had problems with D - if anything it's C.

Is there a celiac food review source somewhere, I wonder?

You're on it! Try this thread. It's funny and has a lot of people's opinions. Also use the search function about various brands. Google also pulls up threads from here pretty well.

[jess-gf]

Well I spend about 4 hours between Trader Joe's and Whole Foods today I much prefer TJ's - the store has a better layout, doesn't feel as crowded, and it's sooo much cheaper! Plus TJ's has so many gluten-free options. Things that are gluten-free have little "G" icons that are easy to see - awesome! Plus they printed out their list of gluten-free foods as well. The only reason I went over to WF was because they didn't have quite as much selection of flour alternatives.. but that's about it. I got a jar of their peanut butter to try and make those peanut butter cookies SandSurfGirl suggested. I also got their pumpkin butter which I have read that most celiacs can eat - though the label does say that it's processed in a facility that also does wheat :/ Not sure about that one.

I'm still a bit stumped with what to bring for TG. I'm going to test out this recipe and see if it's good or not: Open Original Shared Link

[cap6]

Take it slow. And everyone is right. Your body will slowly heal and start to tell you what you need. You can only make so many changes at a time or it is completely overwhelming. I find (to my dismay??) that I now crave fruit and veggies rather than sweets & junk stuff (something wrong with that picture. lol) Given a choice I would rather munch on carrots & hummus than chips with the rest of the gang. I think that it is just my body finally healing and starting to smile again.

Sandsurgirl - you made me laugh! My first shopping trip I put my head down on the cart and cried! We can laugh about it now - I think!!!!! Really.... the shopping does get easier and easier.

[jess-gf]

I felt like crying, but I think I just whimpered! Luckily my boyfriend was with me at the time and he is very supportive. He just wants me to feel better.