Celiac disease

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  • Dmarten
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    My daughter has celic also, it isn't all THAT hard. It is very overwhelming at the beginning, but as time goes by , you do research and just talk to people you will find alot of help. More and more restuarants are including gluten free menus. The one thing that I can tell you to be the most careful of is cross contamention. Good luck and ask if you have any questions.
  • courtney38214
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    i have been gluten free for a year and a half because of an allergy and i pretty much ate like a child before! i didn't know what i was going to eat when i cleared out my cabinets. there ARE many great substitutes for the things you have to give up. also so many great foods are naturally gluten free! here's a little list of things you can substitute that are the best tasting i've come across:

    tinkyada brand pasta- they have all types of noodles, even lasagna and it's rice based
    udis bread- come in whole grain and regular and also bagels, usually in the freezer section, by far best tasting gluten free bread
    udis pizza crusts- 2 crusts in a package and you can put your own toppings on it, tastes great and super easy
    udis hot dog buns and hamburger buns- just came out this past summer! in freezer section
    kinnikinnick cookies- closest thing to oreos and also have vanilla cookies
    bisquick gluten free pancake mix- SOOO good! i use it to make chicken tenders too!
    betty crocker gluten free cookies, brownies and cake mix- i can't tell a difference in any of these, delicious!

    go to celiac.com and you can print out shopping lists of what to look for on labels until you get used to shopping for gluten free foods. most things come packaged and labeled "contains wheat" in big bold letters but sometimes it's hidden.

    in my case- i know now, that i've had an allergy since i was young but it wasn't confirmed until this past year. when i reached my early 20s i got more and more sick to the point where i could barely get through a day. i've heard that it worsens as you reach adulthood so it's good that you caught it now and can adjust the diet! good luck :)
  • lin7604
    lin7604 Posts: 3,019 Member
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    thanks everyone for all the helpful information. I am a bit overwhelmed right now but i know it will get easier as time flies...i just am not sure yet if it's just a sensitivity or a actual allergy. i hear there is a difference between having celiac full blown or just a gluten allergy/ sensitivity..... so a whole lot of learning is still taking place....
  • stephabef
    stephabef Posts: 936 Member
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    I was diagnosed with Celiac a year ago. If you have any questions, feel free to message me. <3
  • stephabef
    stephabef Posts: 936 Member
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    thanks everyone for all the helpful information. I am a bit overwhelmed right now but i know it will get easier as time flies...i just am not sure yet if it's just a sensitivity or a actual allergy. i hear there is a difference between having celiac full blown or just a gluten allergy/ sensitivity..... so a whole lot of learning is still taking place....

    Celiac is an autoimmune disease, so it's really quite serious. In my case, I was dealing with joint pain, neurological symptoms from vitamin deficiencies (dizziness, confusion, irratibility, etc), gastrointestinal pain, and a whole string of symptoms that I didn't realize was caused by CD until I was diagnosed. Autoimmune means it affects more than one body system. The small intestine is primarily affected with CD, but as the villi are damaged you become unable to absord vitamins, etc. Prior to putting your son on a GF diet, he should have an intestinal biopsy to confirm/deny CD. If you put him on the diet first, your test results won't be accurate. I had to go back to eating gluten for 3 months (it was incredibly painful) in order to get an accurate test reading.
  • lin7604
    lin7604 Posts: 3,019 Member
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    thx. yes that is exactually what his dr said, she said she was referring him to the specialist and needs to have a biopsy done, until then keep him eating all his favorite foods. We are going on a 10 day trip to mexico on the 30th and she said maybe to limit "some" of it just so he can still enjoy his holiday without tummy aches but not completely. I just doesn't seen to bother him with everything he eats, only some tings and some days more so then another?
  • ALH1981
    ALH1981 Posts: 538 Member
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    Hi everyone.

    Does anyone have malabsorbtion associate with celaiac? I have severe anemia due to this...

    Can anyone help?
  • LuciaLongIsland
    LuciaLongIsland Posts: 815 Member
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    Hi everyone.

    Does anyone have malabsorbtion associate with celaiac? I have severe anemia due to this...

    Can anyone help?

    My friend had severe celiac. She had every scan, its gluten free, sanitizes everything. She had surgery to test for cancer and remove part of her intestine. She has severe pain and is down to 80 pounds. Her case is quite severe. I don't think she has anemia. Now they say it is an inflammation in the bowel. My advice is see a good doctor or maybe 2 or 3. I want her to see a specialist as she is getting worse.
  • amandakaye79
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    I was diagnosed Celiac just over 3 years ago - and while its an adjustment, its even gotten a lot better in those three years. I had the blood test - and it was also positive. When I went in for my biopsy, the GI doc said that it looked like it was Celiac, but still needed to wait for the biopsy results for a definite diagnosis. I also live in Canada - and most of the grocery stores carry gluten free stuff (and even the bulk barn!! - which is my favourite place to get my GF flour!!) I find eating out a little inconvenient, but there are more and more restaurants offering gluten free options. Don't worry!! It's only going to get easier from here on out!
  • mooglysmom
    mooglysmom Posts: 319 Member
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    I have a gluten sensitivity (I would probably be diagnosed Celiac if I wanted to go through the pain of testing, but that's just not happening - I've been GF for nearly 3 years now).
    This is an ALL or nothing diet, once you start it. Cheating is NOT Ok, especially if it is true Celiacs. It's not just stomachaches and diarrhea. It's joint pain, neurological symptoms, vitamin malabsorption, and more. If you have Celiacs, going off the diet and being cross contaminated can lead to a host of problems, that may or may not be noticed. I highly recomend celiac.com for informantion and support.
    And, no, he won't starve. I'm on here to lose weight, aren't I? :). I've put on so much weight recently eating safe junk food! lol. I can make anything GF - get a good GF all purpose flour, some xanthan gum, and you can use any recipe cup for cup.
  • sanddollar18
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    I also have celiac. I was diagnosed almost 20 years ago when my brother was hosputalized for malnutrition and failure to thrive. The whole family was tested and all of us (except our dad) were diagnosed. No one expected me to be celiac because I was much bigger and healthier than he was. My apparent health was not indicative of whether I had celiac or not, and really my body was suffering.

    I've had my ups and downs over the years and the hardest part for me was acknowledging that I was still damaging my body, even though I didn't feel it. Some of my siblings have severe stomach issues but my celiac does not present in that way. I have some bloating but I never complained of a sore tummy growing up. I have mood swings and irrational irratablilty when I ingest gluten. One of my brothers has stomach issues and depression when he eats gluten. No issues with either since being gluten free. My grandmother was recently diagnosed, after over 80 years of eating gluten. Her symptoms are joint pain, memory loss and confusion. All these symptoms disappeared after going gluten free.

    If your son does end up being a celiac, make sure to look at all physical AND emotional abnormalities and see if they clear up on a gluten free diet.
  • angienh33
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    I was diagnosed with Celiac Disese last March and have been eating gluten free since then. I have 5 sons, so at first I would make their dinner and then something gluten free for me. That didn't last long and now we all eat gluten free dinners together. Sometimes I give them something GF and they don't even know.
  • ShrinkinMel
    ShrinkinMel Posts: 982 Member
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    Bread is hard as gluten free bread is expensive for teeny loaves. But pasta is quite easy and there are many options available.

    I used the Bob Mill's gluten free pizza dough mix and it was good. I'm sure there are GF(gluten free abbreviations) pancake mixes too. It takes awhile to get all the hidden gluten(in things even like rootbeer as a malt ingredient) out but he will feel so much better. He won't starve his body is more likely to starve given a continuation of gluten foods since he isn't absorbing nutrients as well.


    I don't have a diagnoses on my daughter but I'm sure she has at least some mild form of sensitivity to gluten. But her pediatrician hasn't responded much to complaints of tummy aches I've mentioned. Its tough because there are lots of reasons kids get tummy aches. But she also bloats each time she had gluten pasta where as when I use rice noodles or my favorite ancient harvest quinoa noodles she doesn't bloat out or complain of tummy aches as much.
  • vjrose
    vjrose Posts: 809 Member
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    Huge market for gluten free, not sure where you are located though but Google can help you find stuff in your area. Amazon sells a ton of gluten free stuff, often with super saver shipping and there are lots of other websites to choose from
    If he is hooked on pastas and pancakes and such I have found that Pamela's baking mix seems to work best for making treats close to wheat type.
    Tinkyada pastas cooked correctly are very close to the texture of wheat pasta but there are corn ones that are pretty darn good.
    Make your own mac and cheese or get Annies rice mac and cheese, the ones that come in boxes otherwise are pretty awful, especially for kids. There are many brands of elbow macaroni available.
    Become an expert label reader, many things you wouldn't think have wheat do.
    Feel free to pm me or friend me, I have been gluten free for 12 years and my grandson is both gluten and dairy free, that is always fun at the holidays.
  • karenwill2
    karenwill2 Posts: 604 Member
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    if your son tested positive for Celiac disease please discontinue any exposure to wheat, barley or rye! If you allow him to have it, you are poisoning him. I am a Celiac and cannot have anything that has even been close to anything containing wheat, barley or rye.

    He may not seem to get sick with more than a little tummy ache now but Celiac is an autoimmune disease. Everytime he comes in to contact with these items his body is attacking itself. It is malnourished him as this is keeping him from getting the proper nutrients and is known to make children short forever due to this. So it can and will stunt his growth,.

    You can make GF everything! Seriously. Pamela's has pancake mixes and Udi's makes amazing bread. I suggest your family ban together and get all gluten foods out of your house and leave them out! If you open a bag of flour in your kitchen it becomes air born and will make him sick. Yes, inhaling will hurt him too. Not to mention it contaminates everything surrounding. Gluten proofing your house takes a lot of work but is totally work it.

    Pizza.. make it homemade or order some online at www.stillridingpizza.com it is delicious. I have used their crusts and they overnight them to you and they arrive frozen.

    Udi's... best bread ever. They also make cinnamon rolls, bagels, doughnuts, pizza crusts, hamburger and hot dog buns and more

    Pamela's has pancake/waffle mixes that are awesome. Add a tsp of vanilla for perfection.

    Betty Crocker has GF mixes that are made in a GF facility for cookies, brownies and cake.

    Kinnikinnk or something like that has an excellent thicker crust pizza crust. My husband says is the best store bought crust he has ever had.

    I made biscuits and gravy with GF flour that was awesome.

    If you can make it with gluten, you can make it without.

    As for pasta, rice pasta is amazing. you cannot tell the difference

    If he likes soy sauce, you gotta buy La Choy.

    No more gluten for this boy ever, I beg you. It is so bad. After a week or two he will be a totally different kid.
  • lin7604
    lin7604 Posts: 3,019 Member
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    I was diagnosed Celiac just over 3 years ago - and while its an adjustment, its even gotten a lot better in those three years. I had the blood test - and it was also positive. When I went in for my biopsy, the GI doc said that it looked like it was Celiac, but still needed to wait for the biopsy results for a definite diagnosis. I also live in Canada - and most of the grocery stores carry gluten free stuff (and even the bulk barn!! - which is my favourite place to get my GF flour!!) I find eating out a little inconvenient, but there are more and more restaurants offering gluten free options. Don't worry!! It's only going to get easier from here on out!

    thanks for the tip on the bulk bard, didn't even think of that place!!!!
  • lin7604
    lin7604 Posts: 3,019 Member
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    thanks everyone. i still don't know if it is 100% celiacs yet as his dr said to keep him on his reg food until he gets the biopsy done. as someone said there are many reasons why kids get tummy aches... since he had his blood work he hasn't once complained of a tummy ache...his blood work came out positive but his dr said last week that since he hasn't had a tummy ache in almost 2 months and he's been eating a ton or wheat products, it may be just a sensitivity but we will know once the test is done. haven't heard at all about a date for him to be tested a all yet either.... so we carry on as normal until we get him tested but i am still taken in information as much as i can just incase he finally gets the biopsy done and find out it is in fact celiacs... then i will be one step ahead, :)