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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com 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 Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can 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-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is 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 Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

New To All Of This
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Hi - I'm new to all of this and a little overwealmed.

My 6 yo son is not "officially" disgnosed with celiac disease - yet. He had positive blood tests but negative biopsy. His Pediatric GI is repeating all blood tests, doing a special Celiac Panel through a special lab, ordering fecal tests, sweat test for CF(a waste since I am not a carrier) gave me the option of repeating the biopsy or doing a year gluten-free Diet with a gluten challenge afterwards and another biopsy possibly. FYI - He is VERY small for his age, has attention issues, speech issues, severe dental issues and is anemic but no other "physical symptoms" - no pain, bowel issues etc.

SO - on we forge to a gluten free diet. This will be a challenge as he is very picky and will not eat some things because of his teeth and oral sensitivities. Basically every single thing he eats is full of gluten - PB&J, Grilled Cheese, Mac and Cheese, chicken nuggets, Spaghetti, toast, cereal etc..... I have two books already and have read quite a bit and have tried some gluten-free staples and all I can say is - GROSS!!!

So basically I just need some guidance from the "Pros" -

I need to know what bread is the best and closet to "regular" bread - He eats PB&J EVERY day and the bread I found just didn't hold up - in fact it crumbled when I was just trying to take it out of the bag?!?!? (And was $4.50 for a small loaf - grrr) Also how does it hold up for grilled cheese etc?

What's the best cake mix? Are "store" frostings ok?

What about bread crumbs? Best macaroni and cheese? Best pasta?

I need all the favorites and tips you want to throw at me. Plus how about money saving tips? I know this is going to be so expensive for a family of 4 and a baby(We will all go gluten-free if Nick has to go gluten-free)

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MarryanneQ,

I am by no means a "Pro" yet. I have my biopsy on May 13. But I am planning on going gluten free after the biopsy regardless of the diagnosis, so I have been checking labels, looking for web sites, and contacting manufactures. I also plan to limit gluten for my two children (8 & 11). These are the gluten free items I think kids would like:

Act II and Pop Weaver microwave popcorn

Fritos

Cheetos

Ore-Ida Golden Crinkles (not all Ore-Ida French fries are gluten-free, but I have the complete list)

Tillamook yogurt

Bush

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Hi Maryanne,

We use Kinnikinnick bread. It is lighter than most gluten-free breads and doesn't crumble, but it is a bit chewier than regular gluten breads. My kids like it toasted, and I imagine it would be fine for grilled cheese (haven't tried it since we are all off dairy right now).

You can sometimes find it in US healthfood stores, or you can order it online at Kinnikinnick.com . Shipping is $10.00 no matter how much you order. the bread is pricey at $4.50 a loaf and only 15 slices in a loaf, but it is worth it to me. I can't stand the dense dry crumbly loaves of gluten-free bread I was wasting my money on before. This bread is more like normal bread. I have tried the Sunflower Flax Rice Bread, Robins Honey Brown Rice Bread, Candadi Yeast Free Multigrain Rice Bread, and liked them all. The yeast free one was more dry than the others. They sell a white sandwich bread that is supposed to be very good, too. I plan to try that with my next order. We have also tried their donuts. We liked the cinnamon sugar and the chocolate dipped ones.

The most liked pasta in our family is Tinkyada brown rice pastas. I have served these to non-gluten-free people and they couldn't tell the difference. They taste great. Lundberg farms is good too. We did not like DeBoles brand, but others have said it is their favorite. Stay away from the bean pastas. They taste nasty.

The best cake mix by far is Chocloate Cake by Really Great Foods. I buy mine from Gluten Solutions. Gluten Solutions website Their muffins and yellow cake are good to, but the chocolate is the best we have ever had. My kids and I like it better than "regular" chocolate cake. It tastes so good, they like it without frosting. I decorate it with powdered sugar.

If you want frosting the ready made Pillsbury is gluten-free. They will list on the back if it contains wheat, milk, soy, etc. as far as the allergens go. We use the white frosting, milk chocolate and chocolate fudge flavors of frosting.

Since we are dairy free we don't do mac'n'cheese right now, so someone else will have to help you out there.

God bless,

Mariann

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MarryanneQ,

Just some more thoughts

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    • How do you know what's causing what?
      I am in same boat, yesterday my stomach was churning and bloated and I don't know what the cause was.  How about keeping a food diary? Just note what you ate and how you feel. A few days may be sufficient to discern a pattern, either some rogue product or a previously unknown intolerance. I have read that after gluten is removed further intolerances which were hidden can become apparent.  I don't know whether you could cut yourself some slack from a full vegan approach whilst your body heals? If not, maybe you could substitute say milk with coconut milk or similar to give your body a break whilst keeping calcium levels high? If you join coeliac uk you can check your sauces etc on their gluten-free database, they'll also send you a book which became my bible until I got a hang of which brands I could eat safely. Finally, have you excluded cross contamination from pots and pans, toasters, shared condiments etc?  Good luck!
    • Blood results - odd
      My results were similar – Low ferritin but normal B12. Although my ferritin levels were low, my Iron serum levels were normal. So might be worth getting your iron levels checked out to see if you have any deficiency in Iron. Also I was deficient in Vitamin D, which is perhaps more of a problem in England rather than the US - Our milk isn’t supplemented with vit D and we obviously have less sunshine.
    • How do you know what's causing what?
      Hi Kam, If you are going to continue the celiac testing with an endoscopy, you need to keep eating gluten until it's done. It can be hard for vegetarians to keep their vitamin D levels up.   This Vitamin D  Council link has some good info on ways to boost your levels. https://www.vitamindcouncil.org/about-vitamin-d/
    • Blood results - odd
      Your ferritin was very low!  My result was a 2 when I was diagnosed.    I hard a hard time breathing and the fatigue was awful due to low hemoglobin levels.  But after going gluten free and taking iron for a few months, I quickly recovered from iron-deficiency anemia.  I still have hemologobin levels that are slightly below range due to Thalassemia which is genetic and my body has adjusted for it.   My B12 and folate levels are  super high.  My B12 is over 2000!  Yeah, I googled and ruled out cancers, etc.  Looks like some of us do not process man-made B12 often included in supplements.  I opted for natural sources of B-12 and folate and my levels have come down a bit.   Let us know your results.  Read the Newbie 101 section under "Coping" within this forum for tips.   Be patient.  It can take months, to years to feel good.  But it will happen!    
    • How do you know what's causing what?
      Welcome to the forum!   Well.....in theory you should be able to heal within a few months (grow new villi, etc.).  The reality is that it takes so much longer -- like a year or two (I kid you not!)  Why?  celiac disease can damage more than just the gut.  Depending on what was damaged (nerves, bones, etc) can impact healing time.  The gluten-free diet has a very steep learning curve.  It's not just giving up gluten.  It's avoiding cross contamination.  Becoming an expert in reading labels.  Learning to avoid foods processed on shared lines in a facility.  Then there are intolerances that most celiacs develop.  The most common ones is lactose.  Why?  The villi tips release the enzymes to digest lactose.  No villi tips?  Then you can not digest lactose.  Often this is temporary, but if you are one of the many adults in this world, you might already be lactose intolerant or might become so as you age.   Other intolerances that members often report include corn or soy.   Some celiacs react to oats, even gluten free.  So avoid oats for six months.  So, try cutting out dairy for a few days and see how you feel.  Then add in those items that have the least lactose:  hard cheese, butter, yogurt and see how you feel.   Avoid eating out for six months until you have seen some improvement.   Read our Newbie 101 thread under coping for more ideas!  Hope you feel better soon.   
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