New to the world of Celiac Disease - Week 1 update on page 2

[chell]

Just this week I was diagnosed with Celiac Disease. It was just the Monday before that it was brought up as a possibility for me. But right now I'm excited at the possibility of feeling better once all of the gluten is out of my system and my body has had time to heal. Yesterday I bought the book "The First Year Celiac Disease and Living Gluten-Free." It has a ton of wonderful information in it so far. It has given me more information that I have been able to find online too. There are so many of the symptoms listed that I've had for years. I'm really excited hoping to find relief now. And I hope that I get to come off of some of my daily medications eventually. I would love to come off of my daily migraine medicine. It really messes with my thinking abilities sometimes.

Yesterday we went shopping at Whole Foods. I love that store but boy is this gluten-free stuff expensive! When looking for some of the items I have a double whammy because I'm also allergic to eggs so there are many of the goodies that are still out for me. We are going to have to learn to make many of our own goodies.

Tuesday I meet with the Dietician. There are just a few things that I'm still unclear about on the foods. That would be food starch, modified food starch, natural flavorings and food processed in a factory or on equipment that also processes wheat. I like to be well informed so I've done a ton of research already. I want to make sure I'm doing the right things. It is my body!

But when it comes to my medicines I'm not so sure. I have to go to the pharmacy to figure out where to go from here. I have to switch one of my prescriptions to the name brand because the generic has gluten but the brand name doesn't. But how do you know for certain about over the counter meds? I haven't gotten that far in my research yet. I did just get the definite diagnosis on Thursday so I guess I'm rushing myself. But I know I need to not put any more gluten in my body at all.

We cleaned out our pantry Thursday night and we hardly had anything left.

Those of you who have been living with it for a long time do you have any tips to give me? Especially about over the counter meds?

I was so nervous waiting for an answer. The longer I waited for an answer the more upset I was getting because I thought the test was going to come back negative. I didn't want it to be negative. I know that sounds odd. But I finally wanted an answer to something. When I have all these tests I never fit nicely into any category. For over 13 years I've tested positive for an auto-immune disorder but we never knew what. I hope this was it! My inflammation is always super high when they do blood work. So I hope after a few months of being gluten-free my inflammation is way down. I want my body healthy! I don't want my heart and other organs to be damaged from the inflammation!

Thanks for letting me ramble on about this.

 

[snorris49]

You came to the right place!

I have Crohn's and had to go Gluten and Dairy free because of it (turns out I'm gluten intolerant and dairy intolerant). It can be challenging and overwhelming, but don't despair, you'll get through it and get adjusted! Pretty soon, you'll be an expert! Whole Foods is a great place to go for GF brands. In fact, if you choose items that are GF/CF chances are, they'll be egg free too. But, you'll have to be diligent about labels! Yes, unfortunately, all the dietary restrictions food seems to be more expensive. It can be frustrating, and I still get irritated by the cost! My grocery bill has definitely doubled! I've been GF/CF for less than a year (April 2009) and I'm still trying new things all the time. I just got these awesome graham crackers by Kinnickick called Smoreables...oh my goodness they rock! (the idea of a smore is so appealing) I have found loads of brands that taste just the same as the regular version of something.

I can't give you any good advice on the meds, but I"m sure someone on the boards can direct you.

Good luck, hang in there, and remember you have loads of support on the Disboards!

 

[EDuke98080]

Hi Michelle!

Welcome to our (my daughter & my) world! I too was not feeling well for years but it wasn't until my daughter got diagnosed that they said "Oh this is a genetic disease maybe your IBS and Fibromyalgia isn't what it seems." After 2 weeks gluten free I felt so much better but remember that it takes 1 to 2 years for you to truely recover. You will feel much better in a few weeks but even so much batter after that! It truely will be ok and not as hard as you might think. There are some great foods out there but it will take trial to see what you personally like to eat. Some of our favorites are nut thins for crackers and Schar pastas are amazing if you like spagetti. There are many products that are "regular" products that are gluten free. Reading labels is key. You need to stay away from wheat, barley & rye. Modified food starch as long as its corn based and manufactured in the United States is ok. If the product contained modified food starch that is wheat based it must say wheat (usually in bold at the end). If in doubt especially about OTC meds, we call the manufacturer. Same with any food. Nestle sent us a whole list of all thier GF stuff. We keep a binder and have added to it as we went along. If you like to go out to eat, UNO's, Outback and Longhorn have GF menues and do a great job as does WDW. Disney is the best eating GF place to go. Hope this helps! If you have any specific concerns or questions, PM or post! We'll be here to help however we can!

Erika

 

[clanmcculloch]

I like this gluten free medications list for prescription and OTC meds.

For foods, I much prefer an overall non-processed foods approach to make my life easier and SOOOOO much cheaper. Here's my basics for a simple gluten free trial. It involves very few specialty products. The few that I do buy are offset by all the much cheaper non-processed foods that I now use.

* fresh fruit
* fresh veggies
* nuts and seeds (unflavored)
* fresh (unbreaded, unmarinated, unprocessed) meats
* fresh (unbreaded, unmarinated, unprocessed) poultry NOTE: read the label on poultry - many fresh ones have added weight that's got other ingredients - make sure it's either minimally processed or states added weight is only water
* fresh (unbreaded, unmarinated, unprocessed) seafood
* milk, cheese, butter
* use oils or butter for cooking instead of sprays
* tofu (unmarinated and unseasoned)
* fresh potatoes (you can do just about anything you want with them - bake, roast, fry, etc)
* beans & legumes
* rice (non-enriched)
* buckwheat
* quinoa

When buying hamburgers, many brands have added flavoring or breadcrumbs. It really is easy to make them so it might be easier for now to do just that. It's easy - ground beef, egg, chopped onion and Lea & Perrin (this brand is gluten free, not all are).

I try to stick with McCormick's brand of seasonings because of companies adding fillers.

Heinz ketchup and mustard are gluten free (so's French's mustard).

Kraft has a bunch of gluten free salad dressings. Check their web site. Salad dressings that have been confirmed to be gluten free can be used as marinades.

Hellman's mayo is gluten free.

For soy sauce, make sure the bottle clearly states wheat free. Real soy sauce always has wheat.

If you really want pasta, the Ancient Harvest (corn and quinoa) is the best though many also like Tinkyada. Avoid the others.

If you really want bread, stick with Kinnikinnick. More stores seem to be carrying it in their health food section. Ener-G is ok but only if you use it for french toast or grilled cheese. It's not all that great plain.

If you really want some type of quick fix frozen meal, Amy’s makes some pretty decent ones. I find them in the freezer of the health food section of my local grocery store.

The absolute BEST pizza crust I've found is using a mix called Chebe. Kinnikinnick does make good GFCF crusts but they're not as good as Chebe. Chebe also makes plain dough and onion bread dough mixes. The thing I like about these mixes is that they do form a dough so I can shape them to whatever I need. I can make bagels, breadsticks, buns of any size and anything else you can think of that would be made from dough. I do also make buns using the Kinnikinnick Kwik Bread mix but you can't shape that. It bakes into nice dinner rolls using muffin tins and I have a tiny sauce pan that's the perfect size for hamburger buns so I do keep it on hand as well. The Kwik bread mix allows for making as big or as small of a batch as you'd like so I love being able to make a single hamburger bun if needed.

Wonderful gluten free guide: http://www.gluten.net/downloads/infopackets/QuickStartDietGuide-2005.pdf

When you add eggs to being gluten free, it does get a bit more complicated but over time you'll get used to looking for that as well. For baking, I just use applesauce as a substitute in most recipes. It works well. Kinnikinnick's website makes it really easy to tell which products are egg free so browse around there.

 

[chell]

Thanks everyone! You guys make me feel better about my adjustment. There is just so much to learn and so many little things to look for. Who would think that brown rice syrup would contain gluten? I'm felling overwhelmed at this point with all the information. Guess I need to step back, take a deep breath, relax, then process everything bit by bit.

Last night I started feeling very sick to my stomach again and I've been gluten free for several days. I thought maybe it was part of the healing process. Tonight my husband took my temperature and I have a fever. And now I've started going from the chills to burning up. So I guess I have a bug of some sort on top of everything else. Gee! Give me a break! Well I guess better now than in the 2 weeks.

Again, thank you all for the replies and especially for all of the info. I'm sure I will have plenty of questions.

 

[ashley0139]

I am 22 and have been gluten free since I was 3. After you do it for a while, it becomes so second nature you don't even have to think about it. So don't worry if you're overwhelmed now. And feel free to let me know if you have any questions.

I recommend subscribing to the quarterly magazine "Gluten Free Living." It gives the most up to date information and always has very useful lists.

If you really want pasta, the Ancient Harvest (corn and quinoa) is the best though many also like Tinkyada. Avoid the others.

I totally disagree. There are a ton of great gluten free pastas out there (thought I can't guarantee they're egg free). My own parents can't tell the difference between them. My personal favorite is Bionature. It's a mix of rice, potato, and soy.

For bread, you must have the Whole Foods brand sandwich bread. Toast it just a bit and it is not crumbly at all. Amazing.

 

[chell]

Thanks! Thanks especially for the info about the magazine.

 

[snorris49]

The Whole Foods bread is pretty good. Unfortunately, it has dairy in it, so I can't eat it anymore (RATS!). Another magazine to check out is Living Without. It covers GF, CF, and other allergies...it's great and has good recipes. They just had an issue out on bread!

 

[chell]

A friend just sent me the link to the Living Without magazine. I tried to subscribe online but I wasn't sure if it took my subscription or not. I need to call them to see. I may need to order that bread issue though. My husband has said that he will start baking bread for me. He is such a sweetie! He had just mastered making me egg-free cakes.

 

[chell]

Is it sad that I haven't even been gluten-free for a week yet and I'm already sad over all the foods I can never have again?

 

[pudge the fish]

no its not sad

I still go thru withdrawls and hate not being able to eat what I want liek going to subway and watching everyone eat a footlong sub and all I can do is sip a diet coke
But I have found a few things that sorta take the place of cookies and cakes and bread.
We're here for you

 

[EDuke98080]

I missed birthday cake the most but last week I again tried to bake a good cake for my son's bday - GF so we all could eat some. I tried the new Betty Crocker choclate mix, made a double layer-two boxes - and it was AMAZING! I will no longer miss cake! It's ok to miss stuff but keep trying new stuff and you will eventually not have to miss so much!

 

[snorris49]

The missing foods goes in waves for me. Sometimes I get really bummed out, but most of the time I'm OK as long as I have good alternatives. Yes, the Betty Crocker chocolate cake mix is AWESOME! The yellow cake is OK. You learn to find new things to love and find things that are modified versions of the original. And there are so many things are naturally gluten free! Tortilla chips, etc. so a lot of things don't even feel different than "normal" (aka eating pre-GF/CF) Plus, if you go to WDW you'll never feel deprived. They take really good car of dietary restriction meals. (and they are soooooo tasty too!)

 

[chell]

Thank you all! This morning out of the blue I wanted toast with strawberry jam so bad. The odd thing is that I'm not much of a toast fan at all. I guess my mind is messing with me.

We will have to buy some of that cake mix. Tonight we are having spaghetti. We have a few different brands but my husband decided we will try the Tinkyada brown rice pasta. We have some corn and some quinoa too.

Bless his heart, he went to the store to pick up some Italian sausage for the spaghetti. He wasn't completely sure if the sausage was safe so he called the company while in the grocery store. He's so awesome! I can just see it now. He's SO good to me!

 

[LilyWDW]

Thank you all! This morning out of the blue I wanted toast with strawberry jam so bad. The odd thing is that I'm not much of a toast fan at all. I guess my mind is messing with me.

We will have to buy some of that cake mix. Tonight we are having spaghetti. We have a few different brands but my husband decided we will try the Tinkyada brown rice pasta. We have some corn and some quinoa too.

Bless his heart, he went to the store to pick up some Italian sausage for the spaghetti. He wasn't completely sure if the sausage was safe so he called the company while in the grocery store. He's so awesome! I can just see it now. He's SO good to me!

He does sound so amazing! Having him behind you and supporting you will help make the transition so much easier. I don't really have any suggestions, but I did want to wish you good luck!

 

[chell]

He does sound so amazing! Having him behind you and supporting you will help make the transition so much easier. I don't really have any suggestions, but I did want to wish you good luck!

Thank you. He really does make it easier. His support means so much. Tonight at dinner I did threaten him though. We went to Outback & they brought out the bread before we could tell them not to. I knew he wanted some. He wouldn't eat any since I couldn't have any. So I grabbed it by the knife that was in it and told him he had to eat some. I'm sure people around us thought I was being mean but I wasn't. We had a good time. He took one nibble and tried to get me to look at something behind me so he could spit it out. But I didn't fall for it! He said that since I couldn't have it he didn't think it was fair to eat it in front of me. When I went to the restroom he ate a piece of the bread.

Did you know their Chocolate Thunder From Down Under is gluten-free? I know it isn't egg-free but I had to have some. I mostly ate the whipped cream & ice cream but had a little brownie too. It was nice to have something special.

 

[chell]

I've been gluten free just over a week now and can already feel a difference. I've actually felt good. It has been the first time in years!!! I've only needed ibuprofen for muscle and/or joint pain once. I have Fibromyalgia & arthritis.

In this book I bought last weekend I was reading all the stuff some people with Celiac have and Fibro was listed along with Hypoglycemia. On the weekends I usually eat a bowl of cereal. Usually about an hour later I have to have something else to eat because my sugar just drops. It is VERY frustrating even after all these years. This morning it didn't happen! Three - four hours later I just got hungry like a normal person. It was awesome!!!

I can't put into words how excited I am at the possibility of feeling even better.

Right now I'm not feeling so great in my stomach and belly. We went out for dinner. I called ahead to make sure my ham would be gluten-free. They assured me it was. Now I'm not so sure because my body isn't feeling the best. I don't know. I did have a bowl of cabbage with it. Maybe it's just gas. I just thought of that. I hope that is all it is. I've done everything I can to be super careful and to make sure nothing is contaminated.

Do you still have issues going to the bathroom once your body gets cleaned out of all the gluten? I'm not "regular" right now and wonder if I'll have to take something to make that happen. Sorry for TMI. I am taking Align and hoping that will help. I'm also trying to eat lots of fiber in fresh veggies.

 

[EDuke98080]

Do you still have issues going to the bathroom once your body gets cleaned out of all the gluten? I'm not "regular" right now and wonder if I'll have to take something to make that happen. Sorry for TMI. I am taking Align and hoping that will help. I'm also trying to eat lots of fiber in fresh veggies.

I am laughing because I spent more time amazed when after being off gluten, for the first time in 20 years, I was "going" on a daily basis. My family was like yeah we've been telling you for years that you are not normal. I never believed them but I guess it's true! I have benn GF for amlost a year and no longer have to take fiber choice every day, don't have bouts of binding or runs and are "regular".

Sorry to offend anyone with the potty talk but I couldn't help but comment. You will find that you will settle down after a few weeks of the diet change. The only problem I have now is knowing if a stomach ache is a bug or a gluten mistake. It doesn't happen very often though if you are super careful and go to places that know what they are doing with GF cooking.

I also have fibro and that is much improved with the GF diet. They say the gluten causes inflamation all over your body and without it the inflamation everywhere heals. A year in I am so much better than I could have ever imagined and you will be too!

 

[itradehilton]

My DS has celiac and when we where in Colorado we found Udi's bakery. It is a GF bakery and now Whole Foods in our area carries some of their products. The pizza crust is the best. The only bad part is they don't seem to be able to keep it on the shelf long enough.

 

[ashley0139]

I can't comment on the irregularity part since I've been GF since before I can remember. The thing to remember is that not every time you get a stomachache means you ate something with gluten. People without Celiac get stomach pains too. You will feel A TON better (which clearly you already are - and that is amazing for just after a week) but stomachaches still occur sometimes. Just soooo much less frequently. Glad you are feeling better already!