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Found out my sister has celiac disease...

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I was relieved when I found out that the doctors had finally found the cause of my sister's stomach problems, but once I heard the word "celiac" it felt like I just got slapped across the face. I looked up online what my sister couldn't eat and had to stop looking because there are so many things she'll never be able to eat again. She's only 13 and now her life will have to be planned out, and she will have to examine everything she puts in her mouth.

They also found that the disease has gotten bad, and if we wouldn't have done anything to treat it, she would have gotten cancer within 2 years. My sister is in denial and keeps closing her ears every time the subject comes up. This is really devastating for the whole family and I don't know how life can ever be normal for her again.

So if any of you are familiar with the disease or even have it, can you please give me some tips so that I can help her? My parents and I are also getting tested because it's genetic. Frown

10 Replies (last)

D: Luckily, there's quite a few gluten free alternatives of food around for most things. Most supermarkets have free-from sections that sell gluten free produce as well as health shops and the like. Can I ask where you live? I'm a bit unhelpful at the moment, but if you happen to be in the UK I could probably reccommend a couple of health stores that I know sell gluten free food. I'm sorry for your sister! ]: But at least, now you know the problem, you can work towards solution. :]

Thanks. I live in the U.S. unfortunately, but we're definitely going to have to start keeping our eyes open for gluten free produce.

Kids with Celiac Disease : A Family Guide to Raising Happy, Healthy, Gluten-Free Childrenby Danna Korn really helped me out when I was a clueless, newly diagnosed Celiac a few months ago. It has extensive lists of what can and cannot be eaten, gluten free convenience foods, resources for celiac support/products/recipes, and explinations to tons of other things. Most libraries will have this book, so it likely won't even cost you to look at it.

I'm 15 years old myself, and I understand that it stinks big time to have to restrict yourself so much. On top of needing to stay gluten free, I also must avoid citrus, spicy foods, onions, mint, caffeine, chocolate and fatty foods. I have bile reflux and acid reflux on top of celiacs, which causes my stomach to have major issues if I eat any those foods. I take a medication for bile reflux twice a day and it MUST be taken 2 hours after a meal and one hour before. I also cannot eat within two hours of laying down unless I want to have major cramps later on. I bike a lot and need about 3000 calories a day at the moment, which isn't easy with so many limitations on my diet and so little time to eat. I really do feel her pain. It is VERY hard to be normal when you are ill. It gets better in time, however...I promise. I've learned to adapt to my rigid needs by making gluten free breads and pizza crusts, buckwheat dumplings, brown rice dishes, corn/rice pasta, bean dishes, and popcorn. I am ina  hurry at the moment, but I'll come back soon to list breakfast, lunch, dinner and snack ideas for her. Meanwhile, here are some websites that I've found extremely helpful.




In order to obtain gluten free menus to fast food places/grocery stores, search for "Store/Restaurant's name here gluten free" on google. If you don't get results, it is best to call the store. I've compiled a list of gluten-free favorites at food stores/restaurants that I go to and have it printed out for easy reference. Your sister may want to do the same if you eat out or are going on a road trip.

I wish the best to you and your family!:)

Ooh, missmagill got in before me. xD I was going to link to and iac1.shtml - British based, but the first has general information and the second has some recipies. [: Sorry I can't be a lot more helpful!

Thank you everyone. Those links are very helpful and I am going to show them to my parents.

Hey, it could be worse...the doctors thought that one of my friends had Celiac Disease, but then it ended up being Crohn's.  She was about 16 at the time.

I hope all the tests come back clear for you and your parents :).

I have friends with Celiac's. It can be a bit of a pain with the limitations, but your sister will feel SO much better once she eliminates the gluten.

However, she may also find out she is unable to eat other items. One of my friends is in this process now. She thinks she is unable to have dairy and possibly soy. Just keep in mind all the other food options and possiblities. Better health is worth it, especially discovering this at an early age. (My friend suffered for 30 years or so before the doctors finally figured it out.)

I have a wheat allergy, which was severe 20 years ago, but now I can tolarate some. Celiac disease more restrictive but little similar. Eating at home is easier, because you can check ingredients in  everything you are eating (foods contain ingredients made by grains, but go under a different name, ie, hydrolyzed plant protein should not be eaten unless it specifies it is corn or soy).

Cooking with rice and other allowed flours is great at home but use different cake pans from where wheat has been baked...otherwise condition will flare up.

Candies and chocolate bars often contain grain ingredients, packed and canned soups are almost impossible to find without grain ingredients or msg. Msg today is made from starch and sugar (could be wheat starch so I would be very careful. I did not eat any baked goods,breaded items, pastas, package foods, anything that listed msg or hydrolized plant protein or starch unless it specified what plant's protein and starch. When eating out, always ask if fries are fried in separate oil from breaded things, etc. Fast food is very hard to get gluten free, chinese is not a bad option as long as preparation has not caused cross contamination. Also mexican can be gluten free, depending on spice mix used to spice meat or chicken, but hard corn tortilla is gluten free.

My best tip is to just make everything at home from scratch and visit your local health food store for rice bread and pasta. Read all labels like a lawyer, there are so many of gluten ingredients hiding in foods. Celiac disease may take some of the convenience factor out of life, but you can still have a great variety with roasts, stews, soups, salads, flourless cakes, rice bread and pasta etc.

As with the previous poster, I too have a wheat allergy. I tend to stick with Gluten free items because it is easier than reading every label. If you live near a Whole Foods, they have TONS of options to choose from. Lots of grocery stores have sections where you can get gluten free items (my parents live in rural Vermont and they always find yummy things for me to eat!). yes, it does make things harder and eating over at people's houses is difficult because they never understand why I can't eat certain things- but it is not impossible.

Also, eating out is getting easier because lots of restaurants have gluten free menus, including Pizzeria Uno's (I think that is a national chain, although it may only be east coast...not sure). Just visit restaurant's web pages and check the menus. Additionally, if you tell any restaurant that you are allergic to something they will be very careful to serve you properly, because if you are fed something you can't eat after asking you can sue them.

Feel free to message me if you want to chat more.

Just so you know, celiac disease, regardless of how long it has gone untreated, cannot turn into or become cancer. It is a completely different disease process. People who have lived with untreated celiac disease for years (usually as in decades) are at a very slightly higher risk of certain cancers, but when following a GF diet that increased risk drops to the same as the general public.

I have celiac disease, was diagnosed a few years back. Symptoms went on for nearly a year before I finally got a referral from my primary doc to a gastroenterologist. The primary did the usual tests, like an ultrasound, upper GI series, etc. Then he told me to try a 6-week trial of All-Bran (!!!) to see if that helped. At the time I had horrible abdominal pain and nausea; I think he thought I was backed up or something. So I was dutiful, and ate my bowl of All-Bran (as in whole wheat) every morning. I got about 2 weeks in before even thinking about breakfast made me want to throw up. As it was the only things I could keep down were saltines, Ensure, and strangely enough the veggie tofu fried rice from the Thai place.

Tell your sister that this is a livable condition!! My best advice is to think of it as an excuse to try all the stuff you wouldn't have the chance/reason to try before. And also, I try not to find "substitutions" or replacements for standard gluten-filled things like bread or cake. Instead, I purposely make a rice- and almond-flour cake with the idea that it is supposed to be a different kind of taste/texture. There are great mixes available (Whole Foods!), but if you experiment, using the individual flours can be much cheaper. The only ones you really need (until you want to get fancy): brown rice, white rice, cornmeal, tapioca.

I've made cheesecakes, moussecakes, 3-layer chocolate cakes, fruit-filled hazelnut tortes, all flavors of muffins and pancakes and cookies, flatbreads and tortillas, and the rest of my family has preferred the vast majority of the GF versions to what they usually eat.

I *highly* recommend Tinkyada pastas, just make sure to add the salt to the water. It raises the boiling temperature so you can cook the pasta longer. Whole Foods GF Bakehouse has great stuff available in their stores. And Doritos Cool Ranch and Reese's Pieces are gluten free! (Well, not diet-friendly, but still...).

Make sure you read the labels of every non-fresh (ie meat or produce) item you buy, EVERY TIME you buy it. Manufacturers are free to change labels/ingredients whenever they want, so something you bought in June may be a different recipe in July. Try to shop during the week in the daytime, so if you are unsure about any item, you can call the 800-number on the package and talk to the company. And don't forget to check medications! I lived on Tums when I was symptomatic, and they contain gluten! If you call major pharmaceutical companies, they will usually contact you directly (I've even had chief pharmacists call me). This is also a great reference (written/updated by a pharmacist):

Feel free to contact me if you want to talk gluten-free!
I have the most wicked (in a good way) GF blueberry pancake recipe - I dare anyone to find a better one that isn't GF!


10 Replies