Just diagnosed Celiac... anyone else?

jo_marnes
jo_marnes Posts: 1,601 Member
edited September 22 in Food and Nutrition
Hi all,

After a random blood screen for food allergies (had a little trouble with pain this year) I have been diagnosed as celiac. I'm totally shocked, horrified and a bit in denial! This has come as a total shock as I've had no symptoms of the disorder (aside from the pain which has not been THAT bad) and am now being told I need to change my entire eating habits for the rest of my life.

So, no gluten. What the hell am I supposed to eat? Or rather, what can I eat for breakfast? I love cereal!!!

Also, I have to get my kids screened.... if they have it I have no idea what to feed them. They live on sandwiches, pasta, pizza, wraps, home baked cakes and cookies etc. Obv they eat other things but gluten based products are a staple part of their diet.

Scared and rather daunted by this life change.... any words of wisdom appreciated!

Jo xxx

Replies

  • Neliel
    Neliel Posts: 507 Member
    There are a ridiculous amount of foods with gluten in but you can buy substitutes. There should be a 'free from' section in any big supermarket where you can find pasta, bread amongst many other things that have no gluten in them.
  • Hotbottom
    Hotbottom Posts: 168 Member
    My mum died of celiac disease and my sister in one too. Im not... Your really lucky you caught it as if it gets outa control... its so tragic. Don't get stressed what actually happens is you start eating much healthier.
    Try stewed fruits and yogurt and honey or agave for breakfasts... or make waffels or pancakes with gluten free flour or chick pea flour. ( I make heaps of waffels and then freeze them to use in the toaster at any time.)
    Lunches and dinners lots of grilled and flavored lean meats and fish with lots of vegetables... Potato sliced bakes are good and there are so many gluten free products now... you don't need to freak. Eat like this and your see the weight drop off you :)
    If you have any questions, please free to add me as a friend and ask any time....
  • LadyPersia
    LadyPersia Posts: 1,445 Member
    42 years with Celiac. My youngest has it, too. I am allergic to most foods so for me eating becomes a balancing game. The worst food for me is soy. So between soy and gluten; what can ya eat? I write a chart of the food s I eat and balance them from highest allergy reaction down. I also get allergy shots. FYI It becoames very interesting when you begin reading all of the products that have trigger foods in them. There is lots of information online.
  • WyomingJewel
    WyomingJewel Posts: 21 Member
    Glutenfreeda.com has a ton of recipes that are gluten free.
  • LadyPersia
    LadyPersia Posts: 1,445 Member
    Great Bakery that delivers world wide is Baby cakes NYC You would never know it was gluten free and you can have soy and other allergens removed. At walmart and most stores, they have a gluten free area. I'll post more website I order from. Celiac.com
  • khollyk
    khollyk Posts: 150 Member
    The Crockpot Lady @ http://crockpot365.blogspot.com/ makes all of her stuff gluten free, because one of her kids has celiacs. I'm not gluten free, but I still use her recipes all the time. Plus, who doesn't love the simplicity of throwing stuff in the crockpot?! She makes meals, snacks, desserts, drinks......all of it in the crockpot, and all of it gluten free!
  • jalara
    jalara Posts: 2,599 Member
    I was diagnosed almost 3 years ago. It's been so much better since!

    If you have ANY questions at ANY time, please let me know. You can send me a message whenever you like.

    Fav tip: instead of wasting money on everything in the beginning, trying to figure out which substitutes are decent, just switch to eating real food (fruits, veggies, dairy, non-seasoned non-processed meats) and try new products slowly.

    Also - GF substitutes have a LOT of calories, so beware!

    Welcome!
  • jo_marnes
    jo_marnes Posts: 1,601 Member
    Wow, thanks for all the replies.

    I've had a browse of the gluten free section in the supermarket.... not inspired I have to say!! Plus it's soooo expensive (well, here in Australia it is anyway).

    I'm not too concerned about my food - I rarely eat bread/ pasta/ cakes etc. I eat a lot of fresh foods - fruit/ veg/ meat and prefer rice to pasta etc anyway. However, I am concerned that even chocolate seems to have gluten in! I'm pretty much what they call a 'silent celiac' in that I rarely have any symptoms.... what I wonder is whether it's ok to eat things that have a small amount in? I mean, I could eat a bowl of pasta right now and be fine.... I'm yet to discover what triggers my pain. I'm fine about cutting out obvious things like bread and flour etc.... but can I eat the spice mix that contains gluten or the things that 'may contain gluten'?

    I'm also worried about weight.... I'm not losing now, I've reached my goal and my dietician even wants me to gain weight. Haven't seen her yet since diagnosis so not had her input yet...
  • TropicalKitty
    TropicalKitty Posts: 2,298 Member
    Hey! I'm not Celiac (or, should I say, my doctors won't test me) but I know I at least have a gluten sensitivity. There's a thread for us: Gluten Free Girls

    Come join us! :)

    As far as what you can eat, that can depend on how bad your symptoms really are. Some people can get away with stuff processed in a facility that processes wheat, others can't. I know I have to be careful even with Asian dishes if they don't use gf soy sauce. Personally, I would try to avoid as much possible contamination as possible. For Celiacs, it's destroying your body, regardless if you can feel it. Plus, I'll bet that you'll feel AMAZING after being gf.

    There are tons of products made gluten free. It takes time to find the ones you like. As for pasta, I don't like the rice stuff. But I LOVE LOVE LOVE the quinoa pasta. And I mean LOVE. Shoot, even the wheat eaters around me like it!

    Anyway, feel free to join our gf thread. :)

    PS - it's the not so obvious things that can be a problem - like soy products tend to have it. You'll learn to read labels like a mad woman. Even Kroger brand coleslaw has it! Wheat/gluten hides in so many places.

    BTW, gluten is in wheat, barley, and rye.
  • jo_marnes
    jo_marnes Posts: 1,601 Member
    Thanks - I'll join that thread.
    Plus, I'll bet that you'll feel AMAZING after being gf.

    People keep saying that..... but I feel great anyway! That's half the problem.... I'm not convinced there is a real issue as I don't feel sick
  • alantin
    alantin Posts: 621 Member
    I'm not too concerned about my food - I rarely eat bread/ pasta/ cakes etc. I eat a lot of fresh foods - fruit/ veg/ meat and prefer rice to pasta etc anyway. However, I am concerned that even chocolate seems to have gluten in! I'm pretty much what they call a 'silent celiac' in that I rarely have any symptoms.... what I wonder is whether it's ok to eat things that have a small amount in? I mean, I could eat a bowl of pasta right now and be fine.... I'm yet to discover what triggers my pain. I'm fine about cutting out obvious things like bread and flour etc.... but can I eat the spice mix that contains gluten or the things that 'may contain gluten'?

    I does damage since your body can't handle it so I don't think eating gluten is very good for you even if you don't feel any pain.. You wan't to keep it in a good state! You should be able to get away with traces of it in food or small amounts, say, in soy sauce for example but don't eat pasta that isn't glutein free.
    The whole thing seems to be pretty much stress related too, so you should avoid glutein even more religiously, the more stress you have..

    Anyway. My wife has something called Skin Celiac so this whole diet business is pretty familiar to me. It isn't a death sentence though so don't sweat it! There are tons of things out there that you CAN eat! And it gets easier all the time as more and more glutein free products are introduced to the market. Can't imagine how it was 30 years ago when my father in law was diagnosed with it..

    You might have hard time coming up with enough fiber, though, so you might want to consider a supplement..
  • LOVINLIFEGUY
    LOVINLIFEGUY Posts: 47
    We found out my 4 yearl daughter has celiac in march. It is difficult at first but is much better now. I am short on time right now, but even if you are not getting symptoms or pain from eatting glutten, it is still doing damage to the intestine and that is what causes all the health problems. We were told as little glutten as an 1/8th or a pinkie nail will do damage to the intestine. Don't eat it!
  • TropicalKitty
    TropicalKitty Posts: 2,298 Member
    You might have hard time coming up with enough fiber, though, so you might want to consider a supplement..

    There are tons of ways to get fiber from things other than gluten contaning products. Other whole grains, whole vegetables and fruits. Legumes. If you avoid the "white" stuff, like white rice flour bread it shouldn't be too difficult.
  • mrsbuzz
    mrsbuzz Posts: 576 Member
    My mom was diagnosed a few yeats back and made the change to no gluten and then when she moved they said she didn't have it. Now I am waiitng on test for my son who has issues...they are checking for chrones, celiac and a few other things. Not sure what I will do if it comes back as celiac....the kid is picky as it is.
  • kjensen15
    kjensen15 Posts: 398 Member
    Thanks - I'll join that thread.
    Plus, I'll bet that you'll feel AMAZING after being gf.

    People keep saying that..... but I feel great anyway! That's half the problem.... I'm not convinced there is a real issue as I don't feel sick

    Have you ever thought of getting a second opinion???
  • mlb929
    mlb929 Posts: 1,974 Member
    My kids both have celiac, one was diagnosed at age 2 through a biopsy the other was diagnosed at 2 through blood work only. The only true diagnosis is through a biopsy. The blood work alone can only tell you indicators. Celiac (at least here in America) is the new "fad" diagnosis. I say that, because when my son was diagnosed 8 years ago, the statistics were 1 in every 20K people, now it's 1 in every 100. It's because testing is up - but the majority of testing is ONLY blood work. The thing about celiac is you can test positive and have no signs of it. You can be symptom free, and still be damaging the intestines, something traumatic like illness, pregnancy or other factor sets the symptoms in motion, but at that point, you are getting so ill, that recovery takes forever. Because my kids were diagnosed so young, they are less sensitive and recover faster if exposed. My mom, wasn't diagnosed until she was 60 and she is extremely sensitive and ill for days after exposure.

    There is a great I-tunes App - Is it gluten free? Both my boys have it on their ipods and it's super when I send them with friends and they want to eat something.

    Frankly, I'm thrilled with the celiac diagnosis! They though my son had leukemia - I'll take gluten free any day over that. The boys eat healthy, fruits and vegetables, no cookies or cakes. Where most of the students in my kids school have weight issues - my are thin and lean. They haven't been to the Dr in years for anything, while the other kids are sick all the time.

    There are some awesome brands - and the availability of gluten free products have been come so far in the past 8 years. Betty Crocker has products like Bisquick and Brownies now gluten free. Tinkyada pasta's are wonderful, and you will learn to cook them just right after the first couple of tries. Corn starch can replace flour most of the time when cooking, and baking I find buying pre-made mixes are easier. Sure my kids don't get cupcakes when the class has a birthday party, but they get a marshmellow or a rice cake with frosting.

    I follow the Fat Flush Plan by Ann Louise Gittleman for my diet needs for the past year. She promotes gluten free for weight loss.

    My opinion, is attitude is everything - focus on what you CAN have not what you can't!
  • exacerbe
    exacerbe Posts: 447 Member
    I don't have Celiac's disease but I do have Crohn's and follow a gluten free diet. Considering I made the switch a month ago, it was slightly daunting the first week or so. However, after a couple weeks -- it became super easy. Plenty of grocery stores and even fast food joints are catching on to the new "craze" as more and more people are shifting to a no gluten diet. Walmart even has their own section dedicated to "gluten free". I think the hardest thing is just reading labels to ensure there is no barley or wheat like ingredients. There are plenty of mixes out there to replace baked goods like pizza crusts, bread, and cookies such as Betty Crocker, Bob's Red Mill, and Pamela's (which is my favorite brand, personally).

    The only thing I miss is beer. Gluten free beers are drinkable but just not the same. Redbridge is the closest to the real thing.
  • exacerbe
    exacerbe Posts: 447 Member
    If you want, you can look at my diary to get ideas.
  • rachel5576
    rachel5576 Posts: 429 Member
    Hey sorry to hear of your diagnosis. I am not celiac but my husband and one of my boys are so our whole family is gluten free. To me it has been such a blessing!!!! We are forced to eat healthier. We eat a lot of fruits and veggies or meat with rice, quinoa. I'm not sure what's available in austraila but here chex makes several gluten free cereals. you can message me if you want more info on what we do. take care
    rachel
  • jo_marnes
    jo_marnes Posts: 1,601 Member
    Thanks again for all your replies. It would be great if there was someone here in Oz who could reccommend what to buy! Brands are different here. I looked on Amazon but they won't ship the foodstuffs here :-(

    I've been told the bloodwork is very accurate, but I am waiting on a biopsy for confirmation. I will probably have to wait a couple of months before I get an appt with a specialist.
  • dancer77
    dancer77 Posts: 249 Member
    I'm a Celiac too! Fairly recent diagnosis....as of June. I eat a lot of real foods and I read all food labels like a Nazi. I fortunately caught mine before it spiraled out of control, but finding out at age19 that you have an incurable autoimmune disease is freaky.
  • dancer77
    dancer77 Posts: 249 Member
    My kids both have celiac, one was diagnosed at age 2 through a biopsy the other was diagnosed at 2 through blood work only. The only true diagnosis is through a biopsy. The blood work alone can only tell you indicators. Celiac (at least here in America) is the new "fad" diagnosis. I say that, because when my son was diagnosed 8 years ago, the statistics were 1 in every 20K people, now it's 1 in every 100. It's because testing is up - but the majority of testing is ONLY blood work. The thing about celiac is you can test positive and have no signs of it. You can be symptom free, and still be damaging the intestines, something traumatic like illness, pregnancy or other factor sets the symptoms in motion, but at that point, you are getting so ill, that recovery takes forever. Because my kids were diagnosed so young, they are less sensitive and recover faster if exposed. My mom, wasn't diagnosed until she was 60 and she is extremely sensitive and ill for days after exposure.

    There is a great I-tunes App - Is it gluten free? Both my boys have it on their ipods and it's super when I send them with friends and they want to eat something.

    Frankly, I'm thrilled with the celiac diagnosis! They though my son had leukemia - I'll take gluten free any day over that. The boys eat healthy, fruits and vegetables, no cookies or cakes. Where most of the students in my kids school have weight issues - my are thin and lean. They haven't been to the Dr in years for anything, while the other kids are sick all the time.

    There are some awesome brands - and the availability of gluten free products have been come so far in the past 8 years. Betty Crocker has products like Bisquick and Brownies now gluten free. Tinkyada pasta's are wonderful, and you will learn to cook them just right after the first couple of tries. Corn starch can replace flour most of the time when cooking, and baking I find buying pre-made mixes are easier. Sure my kids don't get cupcakes when the class has a birthday party, but they get a marshmellow or a rice cake with frosting.

    I follow the Fat Flush Plan by Ann Louise Gittleman for my diet needs for the past year. She promotes gluten free for weight loss.

    My opinion, is attitude is everything - focus on what you CAN have not what you can't!

    My trigger was the "traumatic event". I had the genetic danger I guess you could say of developing CD,but until I had this huge emotional upheaval it never appeared. Then I thought my body was just dying at age 19! I had 90% of the symptoms it was awful. I never had the leukemia scare but even on the days when I really want to hit the drive thru instead of specially packing a lunch I am grateful that I actually can control mine! I have a friend that has it so bad that his vilii are permanently damaged and he is practically starving to death :(
  • SweetOrganics
    SweetOrganics Posts: 16 Member
    I'm gluten free too. There are a lot of gluten free cereals & breads out there now that are delicious. I've learned to cook everything I was cooking before, but only now I'm doing it gluten free & I feel much better! Our Walmart has gluten free section, but the majority of gluten free items I buy are from our local organic food store (Earth Fare) I am blessed to live in an area that has a large number of people who are gluten free so most restaurants have a gluten free menu & even some that are completely gluten free!
    You really have to be careful with gluten if you are Celiac because even removing a burger from a wheat bun & eating it is enough gluten to cause intestinal inflammation. And you have to read labels because if something has modified food starch in it & it doesn't list it's source then it is probably wheat, also anything with soy sauce has gluten unless it's a gluten free soy sauce(tamari). If you need any help or have any questions let me know, I've been gluten free with a gluten free child for a couple of years now.
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