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      • Frequently Asked Questions About Celiac Disease   09/30/2015

        This FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE email alerts What are the major symptoms of celiac disease? Celiac Disease SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful?The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients)Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients)Gluten-Free Alcoholic BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity


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    About dmchr4

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    1. dmchr4 added a topic in Gluten-Free Recipes - Baking & Cooking Tips   

      Tasty Gf Waffles
      This is a recipe for wholegrain brown rice waffles at Sue Gregg's site. They are really good, and inexpensive. Everybody likes them here except my husband who doesn't like waffles anyway.

      Be sure to blend for about 5 minutes before adding the baking powder, though. Otherwise they'll crumble and stick to the waffle iron. I made them first with the buttermilk and then with the rice milk. They didn't turn out that much different from each other and they both tasted great! I plan on trying out some of the other gluten-free grains. I didn't let it sit overnight, but I plan on trying that later too. They freeze well too.

      You can also make pancakes this way too, if you like.
      • 3 replies
    2. dmchr4 added a topic in Celiac Disease - Pre-Diagnosis, Testing & Symptoms   

      Anti-endomysial Test
      My 8 yo daughter had a blood test for celiacs two months ago (but no biopsy), then we went gluten free and she felt better, though she has ups and downs. Well, she was positive on the anti-gliadin, but not the antiendomysial blood test, and the doctor said she probably had celiacs. As I've done more research, I've found that the anti-endomysial blood test is over 99% specific to celiac disease. I thought that meant that if you are negative on that test then you don't have celiacs. Is that true? We actually had the ttG blood test done instead of the antiendomysial, which I guess is about the same thing, just a different viewpoint. When the dr. was first explaining the results, he said that a negative ttG only meant that she didn't have damage to her intestines. But then, when I was talking him to him at the followup appointment last week, I asked him about testing the other family members who didn't have any symptoms. He said not to bother because you can't have celiacs with out symptoms. He said that if you have damage to your intestines then you will have symptoms. So this is very confusing because first he basically says she has no damage to her insides and but she has celiacs, and then he says you can't have celiacs w/o damage and symptoms!

      As I posted on the other thread, I think I read somewhere that you can have gluten intolerance w/o being celiacs. I asked the doctor about that, and he said yes, you can there are a myriad of reasons you could be gluten intolerant. And then he left it that.

      Kind of frustrating to be getting all these different answers! I just have this sneaking suspicion that she doesn't actually have celiacs and that she has some other problem. I wish it were celiacs, because that would be an answer! I guess now I just need a definitive answer, because what this other doctor told me isn't making me feel too settled!

      • 0 replies
    3. dmchr4 added a post in a topic How Reliable Are The Tests? Desperate!   

      Can't you be gluten intolerant and NOT have celiac disease? I thought I read that somewhere.
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    4. dmchr4 added a post in a topic Feels Like Ice Going Up Body   

      Well, she never mentioned having this before going gluten-free. Now it seems like it's been happening more frequently. I'll have to pay better attention to when it happens and if it is food related.
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    5. dmchr4 added a topic in Celiac Disease - Parents of Kids or Babies With Celiac Disease   

      Feels Like Ice Going Up Body
      Well, 8yo dd has been eating a little bit better the last few days. I've been trying to give her more bland foods and I wonder if she may have been getting some contamination.

      But the last three days or so she's told me that she gets a weird feeling that starts in her feet and moves quickly up through her whole body. She says it feels like ice going up her body. Is this a celiac thing too? She's told me this has happened about 3 or 4 times. Could she have a few more weird things happen to her??
      • 4 replies
    6. dmchr4 added a post in a topic Chocolate Advent Calendar   

      What brand is the advent calendar? I have one from Sherwood brands. I didn't see anything obvious on the ingredient list, but it did have flavors I think. I looked on the website, but no phone number and the email submission form didn't work (good grief!) I hadn't thought about this. Anyway, she's been sharing with two brothers, so she only gets one every two days, but I guess I should be safe and just have her do hershey's kisses too!
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    7. dmchr4 added a topic in Gluten-Free Foods, Products, Shopping & Medications   

      Aplets & Cotlets
      I bought some Aplets and Cotlets at Costco and was wondering if my gluten-free daughter could eat them. They are SO good. I emaield the company and this is their response:

      Gluten is a protein found in some cereal grains. Most often wheat gluten is the source of certain people's digestive problems. Barley, oats, spelt, kamut, triticale and other lesser-known grains can cause problems also. Our candies do not have wheat, wheat by-products or any other of the before-mentioned grains.

      Our candies are made with corn starch and corn syrup. Corn also has gluten, but corn gluten has a different molecular structure. Many people that suffer from Celiac disease, or gluten intolerance, can eat our candy, but we suggest a consultation with their physician.

      If you are allergic to nuts or soy, please keep in mind that although we follow very strict cleaning procedures to reduce the likelyhood of cross contamination of allergens, this is always a possibility. Not knowing how sensitive you or your recipient are to gluten, soy or nuts, you must weigh the risks.

      If you have further questions concerning a specific item, please call our Customer Service department at 1-800-888-5696.

      Best regards,
      Customer Service Dept.
      Liberty Orchards Co., Inc.
      • 3 replies
    8. dmchr4 added a post in a topic What's Your Blood Type?   

      I did search before posting but nothing came up. But now I just searched again, and this thread didn't even come up. So either the site isn't working properly or I'm searching incorrectly. Sorry if the topic has already been discussed!

      Still interesting, though so if you want to post your blood type, do!
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    9. dmchr4 added a topic in Celiac Disease - Related Disorders & Research   

      What's Your Blood Type?
      I was reading about eating right for your blood type kind of just for fun (I don't know that I believe it, but my mother does), and I was curious to know if certain blood types had more celiacs or if it's just spread out evenly over the different blood types. Of course this is a very unscientific poll, but an interesting thought. I don't know what my daughter's blood type is, I couldn't find it on her blood results (but I surely will call the dr. and ask!) Mine is AB, but I don't know if I have celiacs!

      Blood Type Diet Food Values

      The above link is to a database of foods. You click on the food and then it tells you if it's harmful, neutral, or beneficial for your blood type. But, to really match it to you, you have to know if you're a secretor or non-secretor based on the dr.'s mail in test. I thought it was interesting that when I selected Wheat/Gluten flour, he says Type B and Type O should avoid it, and Type A and Type AB non-secretors should avoid it. Sure doesn't leave too many people left to eat wheat/gluten flour!
      • 21 replies
    10. dmchr4 added a post in a topic 8 Yo Refuses To Eat   

      Maybe it is just her body adjusting to the gluten-free diet. I know the poor thing is really messed up with all these things going on. She's been craving juice like crazy. She won't eat too many of the gluten-free things, and much what she does eat isn't too nutritious (like white tapioca bread). But of course this isn't too much of a change over before going gluten-free.

      She's also developed some wierd behaviorial things. Ever since Kindergarten, she's gone through many periods of baby talk - I've noticed she does this when she feels somewhat insecure about things (or at least I think so.) She's been doing baby talk almost constantly (worse than ever) for about the last three weeks. (And although I try to be patient it's been driving me CRAZY!) Then in the last few months, she's been putting her hand in her mouth and picking at her teeth and gums with her fingernails. I tell her that she needs to stop that bad habit, that'll make her sick faster than anything with all those germs she's putting in her mouth. I know I'm not helping her break this habit like I should be either. It's just so hard with so many things going on! Got any tips on these ones?

      I've wondered if she was hypoglecemic pre-gluten-free, since she would get very irritable if she hadn't eaten within three hours. Whenever she got seriously grumpy, I would make sure she ate and then try to deal with the problem. How do you test for that?

      Now as for the Epstein-Barr Virus. I didn't know what symptoms this causes, but I found this information: "Many children become infected with EBV, and these infections usually cause no symptoms or are indistinguishable from the other mild, brief illnesses of childhood. When infection with EBV occurs during adolescence or young adulthood, it causes infectious mononucleosis 35% to 50% of the time."
      So she could have EBV w/o having mono necessarily.

      I also read this: "mono can be accompanied by a streptococcal infection of the throat." My daughter has huge tonsils and gets strep throat probably 2-3 times every winter.

      Then I read this: "Epstein-Barr virus, frequently referred to as EBV, is a member of the herpesvirus family" and I found this VERY interesting. My daughter broke out in shingles twice this past summer, which is part of the herpesvirus family! So there is definitely something going on there.

      So I guess I'll call my doctor tomorrow and request a mono-spot blood test and ask about hypoglecemia too. Do doctors get offended by me asking for stuff like this? I've never been one to go into the doctor and make suggestions. If she DOES have it, what is done for it? Since it's a virus, antibiotics won't be effective.

      It's actually a very good thing I decided to homeschool before I knew anything about her health problems. (Been HS for 5 years, also have older 10 yo.) She would've missed a TON of public school, so it's nice that we can HS year round when she feels good and make up for all the lost sick time.

      Thanks for your good ideas and encouragement and keep 'em coming. I need LOTS of them with this poor kid!
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    11. dmchr4 added a topic in Celiac Disease - Parents of Kids or Babies With Celiac Disease   

      8 Yo Refuses To Eat
      I did search for this topic on the boards, and I know it's been discussed, but usually about a toddler/preschooler. I think this may be different in that it's not a will struggle.

      My 8 yo daughter has been gluten-free for about 3 weeks now. The first two weeks, she still had her regular stomachaches, diarrhea, headaches. Her hives went away, and her stomachaches and headaches weren't as bad as before. Her energy level shot up, I'd never seen her with so much energy. Well, at the start of the third week, she got a slight cough/cold. She was complaining that her chest and throat hurt too, so I took her into the doctor. Her lungs were fine and she had no strep, just a cold. Well, she got over the cold within a few days, but for the last five days, she has been sleeping in until 10 a.m. (if I let her, because I know she's not feeling good), refuses to eat breakfast or anything else until around 2 in the afternoon. She says it's because her stomach hurts so bad and it doesn't want anything in it. She describes her stomach as feeling like someone punched her really hard, and yet she also says it feels like a balloon (bloated.) If I let her, she'd lay around all day reading or moping or saying she's bored. (I homeschool her, if you're wondering why she's not in school.)

      The thing is that as soon as she decides to eat, she usually feels better. I let her eat whatever she feels like within reason on her list of foods (I wrote a long list of easy to make breakfast/lunch/dinner ideas) In fact, I used this method before she was diagnosed as well because she's such a picky eater, so this is not something new - just the foods on the list have changed slightly. As an example, today I woke her up at 10 a.m. and told her to eat breakfast and get ready for church at 11. She was mad as a hornet and refused to eat anything. She refused to even go to church. I told her that even though her tummy hurt, she still had to go - in her pjs or not. I told her she could decide to be happy and get dressed and go, or she could be mad (as long as she didn't yell or hurt people) and stay in her PJS but she was going either way. The last two weeks I've stayed home with her because she didn't feel good, but I know that when I make her get busy, she seems much better.

      She decided to get dressed and come with us and she was trying to be happy. She didn't eat breakfast, but I brought some gluten-free toast and an apple. She ate it as soon as we got there. Since our church doesn't get out until 2, I knew she'd be really dragging if she didn't have anything to eat. She hasn't complained about her tummy hurting since before church, and now she's cutting out snowflakes with her little brother.

      So, is she just messing with me? Is this a psychological problem? Is this common after going on a gluten-free diet? Maybe her tummy really does hurt in the morning. Before being diagnosed, she often was nauseated in the morning and didn't want to eat either.

      What do I do? Make her eat? Wait it out for a few weeks because she won't let herself starve (even though I have my doubts about that?) Let her rest? Make her work on school?

      Of course she also gets very angry that she can't eat things like the christmas cookies at grandma's house or her favorite pizza. And I try to be empathetic and yet not allow her to to indulge in too much self-pity. I feel like a big meanie already!
      • 6 replies
    12. dmchr4 added a post in a topic How Young Can Cd Be Tested   

      I'm sorry you have to be going through this with your sweet baby! There IS a higher risk of Celiac disease in people with Down syndrome.

      I would also not trust the allergy test. We had the allergy scratch tests don on my daughter, but nothing showed up even though we KNEW she was lactose intolerant and had other food intolerances as well. If I were you, I'd follow the other posters' advice and just feed him the basics, keeping him gluten free.

      One of the best books I used for introducing baby foods to avoid or learn what allergies the baby might have is called "Mommy Made." I don't think it's still in print, but you may be able to find a used copy. It tells you how to make your own baby foods (which is SO easy), and when and how to introduce foods.
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    13. dmchr4 added a post in a topic Heritage   

      My 8 yo daughter is the one that likely has celiac. (positive AGa test, feeling better after almost 2 weeks on gluten-free diet.)

      My mother- is swedish
      My dad - english ancestry

      My husband's mother - english (I think)
      My husband's father - danish

      On my side, my mother's mother died of lung cancer (chain smoker). My brother and sister had terrible food allergies as children, sister still has them, brother eats what he wants but maybe still has them. My mother has all sorts of wierd health problems (I think she's been going through menopause for about 10 years now). I hate to say it but I really don't know what all her symptoms are because she complains so much I tune her out. I had stomachaches every day in 1st grade, my mom had to get me from school every day around 1p.m. Then we moved and they went away. Around highschool, I started to have episodes of very painful stomachaches, bloating, gas & diarrhea. This mostly went away after I got married and pregnant with my first kid. But I do still occasionally get bad stomachaches and diarrhea. I'm also pretty skinny (105 and 5'4") and I don't gain weight (unless I'm pregnant) and I'm wondering if maybe I have celiac disease too. (Although I really don't want it - like anyone does! - until I figure out how to cook tastier gluten-free foods! Today's cookie baking episode was NOT really encouraging! )

      On my husband's side, his 76 yo father has been healthy his whole life, doesn't drink/smoke but he had lymphoma about 7 years ago (now apparently gone.) His 7mother is in terrible shape (after nine kids!) - on dialysis, has diabetes, and probably some other problems but those are the big ones. My husband has acid reflux and joint pain, but no other apparent symptoms, but I still wonder if he's the one that has celiac disease, or maybe both of us. I'm probably just getting paranoid!

      No one else in the family has been tested yet, since this is so new to us. BTW, is there a best (covered by insurance) test to get a positive diagnosis w/o a biopsy?
      When my daughter goes back to the doctor in about 3 weeks we'll think about testing the rest of the family.

      My daughter has about 55 or 60 first cousins! (Too tired to count them all right now.)
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    14. dmchr4 added a post in a topic All Rice Flour Mix   

      I tried making the Toll House cookies tonight, but they were quite crumbly and I'm sure they'll turn hard. I did use sweet rice flour instead of glutenous asian flour because I thought I read somewhere that those were the same things. Maybe they are not. I couldn't find the glutenous rice flour anywhere, though.

      Also, when making gluten-free cookies, do you find you have to smash the cookie balls down? I rolled the dough in balls and placed them on cookie trays before cooking but they don't spread out like normal cookies. This happened with a batch of gluten-free snickerdoodles from the Incredible Edible gluten-free cookbook (and they were hard, dry and crumbly too.) I'm going smash the cookies and use them for a fruit crumble instead, but we wanted some gluten-free cookies!
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    15. dmchr4 added a post in a topic Totally Glutened...   

      I'm really sorry your relatives just don't understand and don't want to listen! That's gotta be so hard.

      So maybe in your Christmas letter to your relatives you can include a celiac article from a "reliable" source (since YOU obviously aren't one - according to them anyway).

      Here's one: Newsweek article

      Here's a list of articles:
      list of news articles

      Or there was another magazine article that come out in June or July I think that mentioned the 1 in 133 statistic and the average time to diagnosis as 20 years that was in Time or another major magazine like that but I can't find it.

      There was also an article in the Reader's Digest this past summer about 10 diseases that doctors miss, and celiac was one of them.

      Or maybe you can just have the article on hand next time you see them and if they try to tell you that just a little bit won't hurt you, you can give them the article.

      Good luck!
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