Very Frustrated

[Kris Fisher]

I was diagnosed in early April with celiac disease. My frustration comes from not knowing everything. I have the forbidden list of ingredients but it seems the ingredient lables I'm ready don't list any of those ingredients so I assume it's Gluten/Wheat Free. Yet after I eat stuff I feel like crap. This whole week I've not had any energy and was totally in a fog. I can't eat alot of vegies because they upset my stomach so much.

My normal day of eating is an egg for breakfast, cottage cheese with frozen fruit for snack, sans bread with tuna and cheese for lunch and some rice chips for late afternoon snack. Supper is a piece of meat of some sort or potatoe. I've totally cut my eating habits in half. I've always been able to pack away the food yet stay thin. Maybe I'm eating all wrong, that is what i need to know. Help help help

Is there a book out there that you would suggest to give me the inside tract on Celiac?

Thanks

Kris

[kabowman]

I don't know about a book but keep on this board - they will help with everything.

I have eggs and homemade sausage every day for breakfast, gluten-free cereal with hazlenut milk for my morning snack, dinner leftovers for my lunch, potatoes or egg salad or chebe bread for my afternoon snack, and then dinner - meat, veggies, and starch, then the same for my evening snack as I had for my afternoon snack.

It gets better and you build up a variety of foods you can eat.Once you figure out all you can eat, it gets sooo much better. I filled in a lot with potatoes, but then I put on weight too, once I knew what I could eat.

Many people, first dx with celiac disease cannot have dairy and cut it out for a while then are able to add it back in after they have healed. It depends on the people.

[DingoGirl]

It really takes a bit of time, some ups and downs, but press on! It will get better. I gained 15 pounds immediately after removing gluten - body can suddenly absorb everything. I also don't eat nearly as much any more and must watch my weight for the first time in my life. But, I eat a VERY healthy diet and look and feel so much better. Alas, one good thing about being Celiac was I could eat anything I wanted at any time and still be a size 2. those days are gone....

Dairy can also be a problem initially, as it was for me....try removing dairy for a while, you can maybe still eat small amounts of cheese w/ a Lactaid pill, but, the tips of the villi produce lactase and if those are gone, you can't tolerate dairy. Thank God, I'm able to ingest dairy again but I did lay off it for two or three months. But it was causing really severe and painful bloating - I looked six months pregant before removing it.

keep reading the board! You will learn so much. Stay away from questionable ingredients for a while. If you're not SURE about something, don't eat it. If it says "natural or artificial flavors" and DOESN'T say gluten free, don't eat it. Check everything - cosmetics, lotions, toothpaste, anything that goes in your mouth.

It gets SO much easier.

Blessings -

(oops - just read the post above mine - already talked about avoiding dairy! I should read all posts first.....)

[TCA]

Health a beauty supplies can be a MAJOR source of gluten. My daughter was doing really good, then just stopped gaining for a while, then started losing and vomiting all the time. Turns out we had bought some curel lotion with Oat protein about the time she started having problems. We got rid of everything in the house with gluten and she started gaining again, even better than before. Another source might be cross contamination. Do you have a gluten-free toaster? do you come in contact with gluten foods? Coookware need replacing? You ask how we know - because we've all already made these mistakes!!!!!

[lorka150]

Hi Kris,

You're right, it's so overwhelming at the beginning. If you want, you can PM me and I can give you my email address - sometimes it's easier to hvae a communication buddy.

[Nantzie]

Just wanting to verify something. When you say "sans bread", you mean sans as in the french meaning without bread , right? Sans isn't a type or brand of bread is it?

The only reason I'm asking is that quite a few people run into uninformed healthfood store workers and nutritionists (!!!) who will tell them that grains like spelt, kamut and even sprouted wheat (!!! again) are gluten free. Which they aren't.

So just checking. I'd hate to have something like that slip through the cracks and find out in a month you'd been eating some specific type of bread and getting sick every day.

Other than that, check for cross contamination of your food prep surfaces, and definitely check all your beauty products. Someone on here mentioned at one point realizing that her lip balm had oats in it. So it really can be in anything. Shampoo and conditioner are a pain to find without some sort of gluten in it. A lot of people here use Pantene because most of that is gluten free, but Pantene has always made my hair feel like hay.

Once you start eating gluten-free like you have been, you'll notice that even the tiniest amounts of gluten give you a reaction. Your body was just so used to being sick for all those years, that now that it feels well, it really gives you a warning when something isn't right now. Cross contamination sounds like such a paranoid thing, but it's totally an issue. I didn't think it was going to be a problem because I'm "only" gluten-intolerant. But man, it gives me just as bad a reaction as if I'd actually eaten something.

Along with dairy, soy can be a problem at first for people just diagnosed. And soy is another one of those things that seems to be in EVERYTHING. I had problems with it for a couple of months.

Really the way to learn about all this stuff is just to hang out on this message board, read the old posts, ask questions on things you aren't sure of, and you'll be an expert in no time.

Nancy

[lovegrov]

It most definitely takes a while to get comfortable with it.

I read and read and read online, talked to people when I could, read books and called companies. It's been more than 4 years now and if I were starting today, I know it would be easier than when I did start. Still, I never take any sort of a gluten-free product list with me to the grocery store and when I eat out, I do so cautiously but with a good idea of what I can and can't do and what I need to communicate.

None of this comes immediately. Like anything else you want to be good at, it takes practice.

richard

[Kris Fisher]

  Nantzie said:

Just wanting to verify something. When you say "sans bread", you mean sans as in the french meaning without bread , right? Sans isn't a type or brand of bread is it?

My Bread is called Sans Gluten Free. Fiber Bread. From Premium Glutino Supreme. It says gluten, wheat, milk, casein free. What is casein anyway?

As all of you suggested, I will try going dairy free. It's going to be hard but I can do it.

[mouse]

Caisin is the dairy protein. I am allergic to the caisen. Many Celiacs cannot have dairy in their diet until they heal, but DO NOT have an allergy.

[Kris Fisher]

  lorka150 said:

Hi Kris,

You're right, it's so overwhelming at the beginning. If you want, you can PM me and I can give you my email address - sometimes it's easier to hvae a communication buddy.

Lorka, I would PM you but I don't know how. Is it some sort of emailing you personally?

[Ursa Major]

Kris, underneath each post/reply is a bar with different buttons. The first one on the left says either 'on' or 'off', indicating if the person is online or not. The second one is 'card', and the third one is 'PM'. If you go to Lorka's last reply, just click on the PM button, and a new window will come up to PM Lorka. It is just like posting, but only she will get it. It's a private message (pm). And don't forget to put a subject in the subject line, because it won't work.

To check your own messages, look on the top right hand side of this site, where the bar is for your controls. It will tell you if you have any new messages. You click on that, and it brings you to your message center.

[kbtoyssni]

The best book about celiac disease I've read is Dangerous Grains. As for learning the diet, it's a lot of trial and error. I've been living and breathing celiac for nine months now and still don't know everything. There's a point when you first get diagnosed that's so frustrating - the thought of having to call all these companies and research every ingredient is overwhelming. Eventually you just figure it out, though, and have enough "safe" foods that reading ingredients on other foods doesn't seem like such a big deal. Give it some time.

I glutened myself a lot in the beginning because I just didn't know any better. This morning I realized that my hand lotion has oat in it. Honestly, I should know better by now, but some things will slip by you. The only thing you can do is try the best you can and keep reading and researching. It will get easier.