Just Diagnosed Today. A Little Lost

[BriannaP]

I am 21 and was just diagnosed with celiacs today. I was shocked to hear that my biopsy came back positive because I do not have any symptoms so I am really lost on how to handle this diagnosis. I feel like I am in that denial stage where I was told that I have celiacs and I know I have it, but I feel like it is not real and I will be able to go to my grandmas house and have her make me ravioli's and sage (my favorite). But I know I need to face the facts sooner then later and figure out what this is all about. No one in my family has it, and I do not have any friends diagnosed with celiacs so I have no one to ask for advice on where to begin. I am a full time college student, I work part time, and I am doing an internship so I am constantly on the go...I know with having celiacs it is going to be hard to eat on the go. I have no idea what I could grab on the highway, or at school that is gluten free. On what I have read about celiacs so far seems so confusing because there is main ingredients that I cannot eat, but there is also "hidden ingredients" that have different names so I am nervous I'm not going to be buying the right foods. I am open for suggestions, advice, comments, ANYTHING! I know this is only day one, and I have so much to learn. I figured this forum would be a good place to start!

Thank You!

-Brianna

[zero]

I suggest you read the book "Celiac Disease: A Hidden Epidemic" by Dr. Peter Green. I found it invaluable for helping to distinguish the facts from the myths. It is particularly important for you since you mention not having any symptoms which might tempt you (as it did me) to not bother with going gluten free. I never had a digestive reaction to gluten before my diagnosis but after a few weeks being gluten free I was reacting at about the crouton level. It does get easier though you may find yourself going through the various stages of loss.

[GFinDC]

Keep reading on this site, and you will pick up a lot of tips that can help. The way to go is simple foods made at home by yourself. Avoid processed foods and go with whole foods instead. If you pick up a package of "food" and it has more than 3 ingredients put it back. Especially if you can't pronounce the ingredient names or figure out which plant, animal or planet they came from.

Avoid restaraunts and eating food made by other people. Make your own cooking mistakes with ingredients and you will learn faster.

Keep your diet simple and chemical free. Throw out all the soy in your house and anything that has soy in it. I don't like soy, bet you couldn't guess huh . But soy causes problems for a lot of us. Read up on lectins and nightshades and maybe eliminate dairy for a while too

[elkrull]

Brianna -

Hi - my husband was diagnosed 6 years ago and I still remember how overwhelmed he and I both were. It was a strange new world to navigate, but it got better with a little knowledge. Read up on the suggestions made by a previous poster, read more on this forum, and just start eating simple foods at first. Baked potatoes, Tinkyada pasta (gluten free pasta that's really good), plain rice, fresh fruits and veggies, meats done simply (broiled, roasted, sauted, put in the crockpot).

And yes, you should probably avoid dairy, at least at first. You may find that you can tolerate it to some degree after a while, but many people who avoid gluten either partially or completely avoid casein (a protein in dairy). Just wait a while and try it a little at a time. Even if you don't feel like you have symptoms, your body does need to heal for the next several months.

Believe it or not, gluten free information and foods have become much more widely available in the last 3-4 years. It's a lot easier to find things in the grocery store and online (if you want to buy some things you like in bulk). You may also want to meet with a dietician at least once, have them give you a plan so you can feel a little more confident moving forward.

Hang in there, and like anything else, you'll start developing habits and won't have to think so much about it all the time.

Erika

[mushroom]

For a busy person on the go, a crockpot is a godsend. You can throw in some chicken pieces, an onion, some carrots and celery and (just a little) chicken stock, salt and pepper, set it to low for nine hours and come home to a great meal that you may want to thicken with a little cornstarch if you don't like the broth part (but you don't have to - you have chicken soup and make some rice noodles to put in it. or cook up some rie to have with it (make a big pot and you can microwave it for several nights You can do the same for beef pot roast or stew meat with potatoes. Just keep it simple and don't let it overwhelm you.

There is almond milk to have with gluten free Chex cereal in the morning, or make a smoothie with almond milk, strawberries, hemp powder from Trader Joe's, bananas, heck thrown in whatever sounds good Lunches, you can buy an insulated lunch shoulder-type bag and take some leftovers. Maybe you have access to a microwave? Or you can take some in a thermos flask. Larabars are an essential item for me on the road. Whenever I find myself with nothing to eat in the middle of nowhere, there is always a Larabar in my purse, in my car, sheesh, there are Larabars everywhere. Good nutrition, satisfying, and easy to carry. Best to get used to drinking water, cut out the sodas and cokes with the high fructose corn syrup and artificial sweeteners (I know!!, college students live on them but they are not good for you )

I second Tinkyada pasta, recommend Udi's bread, everybody but me loves Van's waffles, (they have things I can't eat), Pam's gluten free baking mix for pancakes, cookies and other stuff.

Don't be overwhelmed - you can do this!!!

[BriannaP]

Thank you everyone for the advice! But, I thought I would not have to give up milk. I am obsessed with milk. I have it with my cereal every morning, I have it with dinner most of the time, and sometimes if I am hungry late at night I have milk instead of food. Does every gluten free person HAVE to give up milk at first? or do people just choose to?

[bonnie blue]

Sending you out a big hug!!! Yes this can be very overwhelming, and everyone here has already given you wonderful advice. I will add I also liked reading Celiac Disease for Dummies. This is a wonderful forum, it is my second home, it is nice to be able to go somewhere where everyone else understands what you are going through. Good luck and sending good thoughts your way.

[Darn210]

Thank you everyone for the advice! But, I thought I would not have to give up milk. I am obsessed with milk. I have it with my cereal every morning, I have it with dinner most of the time, and sometimes if I am hungry late at night I have milk instead of food. Does every gluten free person HAVE to give up milk at first? or do people just choose to?

No you don't necessarily have to give up milk. My daughter did not give up milk. The damage in your intestines caused by Celiac Disease reduces your ability to process the sugar in the milk. Some people have so much damage that they need to take a break for a while (until they have healed a bit), some people are bothered by the protein in the milk and have to take a break for a longer while or even permantly.

My daughter's doctor just recommended that she take the lactase enzyme (Lactaid chewable) if she were going to sit down and have a big glass of milk. When she ate cheese, we didn't even bother because it has a lower amount of sugar in it in the first place. After two months we stopped with the chewable. I don't even know if we really needed it, but it didn't hurt to do it.

There is a steep learning curve to going gluten free. In the beginning it seems overwhelming. In a month, you'll be posting to a newbie just how much and how quickly you learned.

You've found a great resource. Ask lots of questions.

[newmom07]

Brianna,

Welcome! Although I know here is the last place you want to be, this is a great community full of answers. My son, age 2, went gluten-free this spring and also couldn't seem to live without milk. He didn't tolerate it well, but he wanted it so badly. So, we tried lactaid since it seems that some folks have trouble with the lactose and some the casein and we didn't know what was giving him the trouble. Lactaid worked like a charm for 5 months or so and then he was able to tolerate regular milk again. We also found Kefir, which is like a smoothie, was a delicious alternative option for our son. Finally, there is a diet called Paleo - and a great book Everyday Paleo - that is gluten-free and Dairy Free and delicious. I agree with the others, back your stash with processed gluten-free foods if you need (with a toddler, this is a need for us, and I remember college being similarly crazy) and fresh fruits/veggies. Many lunchmeats are gluten-free (Hillshire Farms comes to mind) too. My DS never had trouble with cheese, for others cheese is not a good option. I know how overwhelming this all seems, but it was amazing to watch the transformation of our son, and I hope for you that you will also find that you've never felt so good.

-Betsy

[sa1937]

Welcome, Brianna! While we have no idea what intolerances we have or may develop for dairy products, I did start using Lactaid milk when I was first diagnosed. The Lactaid pills seemed to do nothing for me. But more than milk, I also gave up cheese at first...missed it far more than I did anything with gluten.

Since that time I find I can have cheese without issue...Yaaay! And I am still buying Lactaid milk. I'm about to buy regular milk to test it. I guess I just keep buying Lactaid milk out of habit. Unless you do have a problem with casein, you may be able to use Lactaid milk. But if you do have a problem with it, give it up for awhile and then introduce it. I think a lot has to do with the amount of damage we have and we are all very different.

Good luck on your new gluten-free journey. We've all been where you are today. And read, read, read. This forum was a godsend for me. And ask questions you may have. It's overwhelming at first but becomes so much easier after a bit.

[Roda]

I didn't give milk up at first either. I did go dairy free for a bit thinking it was causing me an issue and it turned out not to be the case. I eat all the dairy I want without problems. I still limit drinking milk because I just got out of the habit when I eliminated it for a time. I eat cheese, yogurt, icecream, cottage cheese, sour cream etc. without incident. My 6 year old didn't give up dairy either. You just have to see for yourself. If you don't want to give up dairy yet, just try eliminiting gluten for awhile and see how you do. If you continue to have issues then look at it then.

For on the go items you can take dried fruit, nuts, Lara bars, Kind bars, Nature Vally almond or peanut crunch bars(make sure gluten free is on the package), cheese sticks, etc. Udi's bread is good and so are Mission corn tortillas. All the gluten free Betty Crocker mixes are good too. For chips we like the Lays Stax, Pirates Booty, Utz and On The Border corn chips. As for premade things, yes I know not the healthiest or most desirable, Underwood deviled ham spread(my kids like it on toast) and Armour vienna Sausages are gluten free. I keep a few of those things in the pantry for an emergency for my kids. Dinty Moore

[Reba32]

I didn't give up dairy, but I don't generally drink milk as a beverage, only cream in my coffee, and I eat full fat yogurt almost daily (I make my own) and sugar free ice-cream occasionally. If I want a drink of milk, or for cereal (which is rare!) I use unsweetened almond milk or coconut milk.

Your best bet for now while you're healing is to stick with whole natural foods that are naturally gluten free. Stick to the outside aisles of the grocery stores, vegetables, fruits, meats (not breaded, not flavoured, not seasoned! season them yourself when you cook them), for now don't even bother with the packaged and manufactured gluten free foods. They're not especially good for you, and just like packaged and manufactured gluteny junk foods, are full of not needed sugars, salt, preservatives and garbage.

It's really not so difficult as it first seems. Just take your time when you're shopping, when I was first diagnosed it would take me an hour or more to make my way around the store, now it's not so bad. But I still read ingredients labels on anything that comes in a package! You'd be amazed at how often they can change!

[BriannaP]

Wow, thank you everyone. This information and advice will help me so much! I appreciate everyone's comments. It is nice to hear from people that have been in my shoes. it is so overwhelming but I know i will eventually adjust. The one thing that encourages me about going gluten free is that I will be a healthier person. Most of the foods I have to give up are not good or healthy anyway, even for people that do not have celiacs.

Again, thank you everyone for your support and advice!

[tennisman]

Thank you everyone for the advice! But, I thought I would not have to give up milk. I am obsessed with milk. I have it with my cereal every morning, I have it with dinner most of the time, and sometimes if I am hungry late at night I have milk instead of food. Does every gluten free person HAVE to give up milk at first? or do people just choose to?

Welcome to forums , I'm sure you will find lots of great information here I never had to give up milk , my Mum is also a celiac and she didn't have to give up milk either.

[RacerX35]

I didn't give up milk. I just had not really had a craving for it lately. I do go and get me some milk (I like whole vitamin D milk) when I went shopping for my wife. She likes to give the kids 1 or 2% and she has fat free milk. You all got to talking about milk, I took a quick break from my office and ran over to the Circle K and bought a little milk bottle. Now I'm dipping my Lucy's Gluten Free Chocolate chip cookies into it. See. We all adjust as we get into it.

Sorry, I'm not trying to rub it in anybodies face and I know it is a choice for most. I stay strictly gluten free, not dairy free.

See ya!

Ray

[kitgordon]

I didn't give up milk. I just switched to Lactaid milk for the first couple of months, and used Lactaid tablets if I was eating a LARGE amount of cheese or ice cream. If you don't have symptoms, you may not need to do anything differently with your dairy. I thought most people gave it up to ease stomach troubles and if you don't have any, you probably don't need to.

[lynk]

Iam so glad that I found this site, I was just called yesterday and informed that I have Celiac Sprue Disease and was told to get on a Gluten-Free diet and see the Dr. after being gluten free for 4 wks. I was blown away and thought/said huh?? what is gluten free and what do I do how??? I was devestated. Today after reading this forum and collecting ideas of foods I can eat I feel it will take me sometime but I will be able to do this. I have had stomach problems for years, was diagnosed w/ Hypoglycemia which Dr.'s ragggg on nowadays so you feel silly and I kept letting it go, thankfully for a endoscopy and colonoscopy they took biopsies and the blood tests it was confirmed.. I feel like maybe Iam not as crazy as I was starting to feel.. Thank you all for being so kind and helpful it sure has made me feel like I can do this. Lyn

[ThatGuy]

I've been gluten free for a little over 10 years (currently 22 in school), and it's not really on my mind anymore, but I love reading about other people with the issue. My best advice about it all is to relax. It's a huge change in your lifestyle but it's not a big deal. Don't be scared to go out and eat or be panicked about eating at friends' houses. Just be aware. Read ingredients, don't be afraid to ask your waiter/waitress what's up, and don't panic if you get gluten. I feel like the stress is the hardest part.

Also, what you'll discover which is really cool, is that the people around you are sometimes fascinated by it. You'll actually have friends show up sometimes and give you something gluten free because they're so stoked that they found it. The transition is really fun. It brings you to be far more away of what you're eating than most other people around you. It really does promote health-consciousness, and as you become better, symptoms that you may not realize you have had your whole life go away.

As far as foods go, it can take a little bit of time to get a balanced diet, but as long as you're eating what you like, it's pretty easy too. Perishables are always a good place to start, and check out some gluten free multi-grain items. Some cool things have been done with quinoa, rice, and corn in the past few years that have made my taste-buds pretty happy.

Don't stress! Good luck!

[mushroom]

Well, I would say, obviously, that you only give up milk if it gives you problems or you feel like giving up millk, not just because someone tells you so. It is really pretty easy to tell if you react to milk. Those who have damaged villi have normallly lost their ability to digest the lactase in milk which is why it is suggested they avoid it until the villi heal.