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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.

Overwealmed
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10 posts in this topic

My 6yo son has not officially been diagnosed yet(Pos TTG - IGA AND IGG were positive and negative I can't remember which one was negative and a negative biopsy) All tests except the biopsy are being redone with a few more added in then effective June 1st we are going on a one year gluiten free diet to see what hapens.

I have appointments next week for the tests, we have to do a 72 hour stool collection this weekend with a high fat diet and next Thursday I see the nutritionist.

We have been going back and forth on this for a few months and I have bought the ROCK book and the recipe book.....

BUT

I am just overwealmed. First off I live in NW NJ and there's just not much out here in the way of stores. We do have a health food store but they offer very little for gluten-free products and our local supermarket has some stuff like pasta and cereal but not much else. (Flours etc) DO I have to shop online? This stuff is so expensive!!!!!! :*(

I just don't know what I am going to feed my kids(we're all going gluten-free -DH and I and our 3yo daughter - youngest is only 7 months) I work full time at home so lunch is usually a sandwich, easy mac, chicken nuggets, pizza, fish sticks, frozen pizza, Canned Ravioli(Sounds like I'm never going to win that mother of the year award huh? LOL) etc. What am I going to feed them? Also what can I do for school lunches? I bought soem gluten-free bread and it was just horrible :( It broke coming out of the package and when I tried hetaing it up as suggested it broke and then when I spread peanut butter on it it broke again - I had ap plate of crumbles by the time I was done and cried for 10 minutes over it.

WHat my son will eat is very limited as it is. - He has HORRIBLE teeth and cannot eat hard and chey things like meats he also has oral sensitivities so things liek pudding, applesauce etc he will not eat......

I'm just lost - What can I do to prepare for this? :*(

Maryanne

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First thing you need to do is stop what your are doing and take a deep breath...

Okay, now you need to get a piece of paper and draw a line down the middle. On one side of the paper make a list of all the things the kids and you normally eat. Include all the fruits, veggies, meats, desserts and prepackaged items. Then start crossing out the ones that you know are off limits. This might seem a little overwhelming at first as you start crossing a lot of things out, but it will get better. Now, next to the items you crossed, on the next column, put the gluten-free item you can replace it with. There are a lot out there. You should be able to replace almost everything.

Now as for bread, I only use Kinnikinnick breads. You keep them in the freezer. When you want a piece you take it out of the freezer and microwave it for about 10-15 seconds per slice. Then you can either use it moist for a sandwich or toast it. It will be a bit chewier than regular wheat bread, but it does NOT fall apart like the other gluten-free breads and it it much lighter and tastier, too. Your son would probably like it toasted, that is how my kids like it. It makes great cinnamon toast with a little sugar/cinnamon mix sprinkled onto the buttered toast. Some health food stores carry it, but it is pretty easy to order it online. They charge $10 flat shipping fee no matter how much you order. It is about $4.50 a loaf, but I find it lasts a while, since we don't eat bread every day. The flavors I have tried that I recommend are the Robins Honey Brown Rice Bread , Sunflower Flax Rice Bread, and the White Sandwich Bread. The Candadi Yeast Free Multigrain Rice Bread is also very good, and the donuts are a little heavy, but taste very good. About 1/2 a donut fills me up. They also make hotdog and hamburger buns, but I have not tried them yet.

I recommend that you try to stick to eating the gluten-free alternatives of the same foods you had before, since this makes the adjustment so much easier. And start switching things little by little now, so that when the time comes to go completely gluten free, you already have the foods you will need. Below is a list I put together using Danna Korns suggestions plus adding some of my own and a gluten-free candy list. These are all mostly dairy free as well, since my family is dairy free right now, too.

Gluten free kids snack foods:

* All kinds of fruits & vegetables

* Chips (we use Lay's original, Lay's Stax (like Pringles, but gluten-free!), Frito's corn chips, and Dorito's Salsa Verde flavored. and plain Tortilla chips)

* Corn Nuts (original flavor)

* Raisins and other dried fruit

* Pretzels (Ener-g or Glutino brand)

* Popcorn (to make it dairy free pop plain kernels and "butter" it with Nucoa dairy-free margarine.)

* Lettuce wrapped around ham, cheese, turkey, or roast beef

* Rice cakes (check with the manufacturer; not all are gluten-free, we use Quaker Apple Cinnamon mini rice crackers, and Sunny Select brand Plain & Apple Cinnamon flavored)

* Hard-boiled eggs or deviled eggs

* Hot dogs (We use Louis Rich turkey franks, but Bar-S brand, Ballpark, and Nathan's hot dogs are gluten-free also)

* Applesauce

* Apples dipped in caramel or peanut butter (if you're sending apples in a lunchbox, remember to pour lemon juice over the slices; that will keep them from turning brown)

* Jello (check on the ready-made cups, I know the powdered mix is gluten-free)

* Fruit cups (individually packaged cups are great for lunchboxes)

* Fruit snacks/fruit rolls (like General Mills, Kelloggs, Nabisco)

* Nuts & Nut butters - Peanuts, sunflower seeds, almonds, walnuts, pine nuts

* Marshmallows (Jet Puffed are gluten-free)

* Andi bars - Chocolate shake flavor protein bar

* Gluten Solutions - Chocolate Mint flavored protein bar

* Gatorade, Kool-aid Jammer puches, Capri Sun pouches, Sunny Delight

* Pepsi, Coke, Sprite, Mug Root Beer, Dr. Pepper, 7-up, A & W Rootbeer, Squirt, Canada Dry

* The occasional candy treat. I have a list of mainstream gluten free and dairy free candies that I use when shopping for candy for my kids. I got it from the Gluten-free Casein-free Diet Support Group for Autistic kids and they are very strick when it comes to putting products in their booklet each year. Still read all the labels, since manufacturers change their formulas far too often:

Nestle: Sweet Tarts, Spree Chewy Candy, Regular Spree Candy

Farley gummy bears & Haribo gold-bear minis

Willy Wonka: Gobstoppers, Bottle Caps, Pixy Stix, Nerds, Runts

Mike & Ike: Zours, Jelly Beans, Hot Tamales

Starburst Fruit Chews (NOT Starburst fruit twists!)

Necco: Necco Wafers, Sweethearts, Conversation hearts (Valentines), Necco Candy Eggs (Easter), Candy Stix, Talking Pumpkins (Halloween), Peach Blossoms (Christmas), Necco Ultramints, Canada Mint & Wintergreen Losenges

Rock Candy (made from pure sugar)

Ce De Candies: Kidz Rings, Candy Fruits, Candy Lipsticks, Smarties

Mars Inc: Skittles, Jelly Beans

Sunkist: Fruit Jems, Jelly Beans, Orange and Cream chews, Super Sour Stars

Sorbee International: Lollypops

Jolly Rancher: Hard Candies, Jelly Beans

Jelly Belly: All flavors of Jelly Beans EXCEPT: Cafe Latte, Buttered Toast, Caramel Corn, Buttered Popcorn, Chocolate Cherry Cake, Chocolate Pudding, Strawberry Cheesecake

As for chocolate, I found that the Scharfen Berger chocolate bars are very yummy. They are gluten and dairy free by ingredients. The small bars are wrapped in a different facility where they also wrap other chocolates that do contain milk, so as a precaution they put a milk warning on the label. I am very sensitive to dairy reactions and have never had a reaction to these bars. They are a bit pricey and not available everywhere (I got mine at Whole Foods) but they are very nice to have when you are craving chocolate. There are also a few kinds of baking chocolate chips that are gluten and dairy free.There is a gluten-free cereal available at many grocery stores or health food markets that's just like Chex--make the mix as you would Chex mix using gluten-free pretzels and seasonings.

* Chex mix style snack using gluten-free cereals (unsweetened) and gluten-free pretzels(Ener-g or Glutino brand) and nuts. Use the chex mix recipe for the seasonings. Make sure the seasonings are also gluten-free.

These are gluten free, but not dairy free:

~String cheese

~Taquitos(some Delimex brand in store freezers are gluten-free), quesadillas, tacos, tamales (made with corn tortillas - they travel well

~Nachos

~Cheese cubes with toothpicks in them and rice crackers

~Individually packaged pudding

~Yogurt

~Trail Mix- Combine peanuts, M&Ms, dried fruit, chocolate chips, and other trail mix items for a great "on-the-go" snack.

(Beware of commercial trail mixes--they often roll their date pieces in oat flour.)

~High-protein bars (e.g., Tiger's Milk, GeniSoy)

I hope this helps a little bit. I put together a snack box for each of my children that they keep in their classroom with them. This gives them something safe to eat in the event of a class snack or party where their might be foods they can't have. It has really come in handy.

Hang in there and make sure you ask a lot of questions and get as much information as possible. It will make it so much easier and you will become more confident as you get going with the diet.

God bless,

Mariann

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Do you have Trader Joe's near you? I am pretty sure there is one in West Field (I live in PA and a good friend drives there once a month to get their gluten free things). THey have some awesome gluten-free things that are REALLY well priced. Their gluten-free frozen waffles taste exactly like Eggo's and are only like $2 a box. When/if you go, ask for a gluten free list. Also, their brand of rice milk is REALLY cheap (like 1.29) and is gluten free, if you're not doing dairy.

I will add some more ideas later, when I have more time. I know this is a really hard time. I just started a gluten-free diet for my family a week and a half ago and it has been really hard, but I feel much better about it now (rather than a week ago and I thought we would starve!).

Mel

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You won't feel like this forever, but there's just too much information to process at first, and you spend a lot of time worrying that you're contributing to the problem not the healing! The advice here is excellent. I would only add that you can keep it simple at first -- plain fruit, plain meat, plain veggies are all effortlessly gluten-free. If you are doing simple things, it gives you a little breathing space to figure out the rest. We also had our son make a list of his favorite non-gluten-free foods, and we slowly worked on substitutes, and grieved for the rest. That's a real part of becoming gluten-free.

gluten-free breads vary a lot, -- we try a lot of things, don't like some of them, do like others. My son loves EnerG Brown Rice Bread, which you can buy at Wegman's-- but I know many other celiacs don't like it at all! Emphasize all the things you CAN eat, and eventually you will get the hang of it. Make too much of something for supper, so you can eat it for lunch the next day. Think outside the bun! You can do this!

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MaryanneQ

Welcome. You have certainly come to the right place to get some support and great ideas!

As you catch on to where to buy the gluten-free products, and also how to maybe make some gluten-free foods, this whole ordeal will become much less overwhelming, and will actually like a matter of fact routine, second nature. I promise! I find myself reading labels now automatically, even if the itemis just for ME to eat, and I am NOT gluten-free! :rolleyes:

I would like to add a couple comments. I would advice looking for a Celiac Support group near to your home. They will be able to direct you to where to get gluten-free products and ingredients in YOUR area.

My next comment is that you are absolutely right.......gluten-free products are very expensive :( compared to mainstream groceries! For that very reason, I have chosen NOT to make my whole family gluten-free, but only my son who needs to be. How could I justify switching 6 people, multiplying my expenses by 6 unneccesarily? It doesn't seem prudent to me. You might want to double think that, unless others in the family are having symptoms that would justify switching their diets as well.

Of course that's just my two cents. To each their own, but I couldn't possibly financially afford to switch everyone if they didn't all need it!

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MaryanneQ: Mariann has given you so excellent advice and a great place to start. I agree that the Kinnikinnick breads (ready made) are quite good. I just do a big shipment and keep them in the freezer. The tapioca rice bread is also good (in addition to the ones already listed) and I like the hamburger/hot dog buns.

There are gluten-free chicken nuggets -- I can't remember who makes them, but Whole Foods has them (in addition to other stores).

Glutino carries individual pizza crusts (corn or rice -- I like the corn much better, which is odd, since I usually like rice) which you can make. Amy's sells gluten-free pizza already made. Last I checked, Kraft macaroni and cheese -- the cheese packet is gluten free, so you can make gluten-free pasta and then add the Kraft sauce.

Danna Korn has two books you might find helpful -- Wheat Free, Worry Free, and another about Raising Celiac Kids.

I would strongly recommend you find the support group in your area since they can be most helpful. Also, some of the gluten-free food manufacturers have websites - you can either order directly, or see what local stores carry their items.

Good luck.

Kim.

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O.K. guys, after about two months of expensive gluten free by ordering stuff over the web, I tried making my own bread products and it was hockey pucks for a while or the bread fell apart when I had a sandwich. Then I found a recipe by Hagman, in her first book I think, for tapioca bread. I ordered English muffin rings and a hot dog pan and began making English muffins and hot dog buns and freezing them. My whole household is gluten free and it was expensive to buy the suff as some of you have stated. I bake now once every three weeks. My husband bought me a small chest freezer when I first went gluten free. So I freeze these rolls and take them out as needed, with about 20 seconds in the microwave they are ready to be eaten and they don't fall apart. Also they taste a little like English muffins and make great hamburger buns. I have now been gluten free for 3 years and as long as I'm careful about eating outside the home, doing much better with the skin and intestinal problems. Shirley

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Wellshire Farms (formerly Yorkshire Farms?) is the maker of the gluten-free chicken nuggets that Kim mentioned. Many Whole Foods carry them as a regular item, but my local Whole Foods can't (or won't :angry: ) get them for me. They are dinosaur shaped nuggets. I would like to try them out on my kids before trying to get a whole case shipped to me!

Shirley, where do you order english muffin rings and hot dog bun pans??

God bless,

Mariann

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See if you can find some soft corn tortilla shells.. double check the ingrdients! Those can make good sandwiches.

Presumably as he is on a gluten free diet his teeth should improve and his sensitivities may lessen, but that is a real issue! Rice cakes do make great sanwiches and they are not too hard and not too soft! they should be just right!

I grew up in NW NJ and I know there isn't much in the way of health food stores out there.. you may just need to go east once a month to any store you find.. the

Have you located any ROCK or other celiac support groups nearby?

They will be of the most help to you locally.

Also try this site for some gluten free recipes.. they require a little more prep but with some planning ahead you could freeze portions for lunches.. www.pecanbread.com

Hope this helps!

Denise

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Marianne, Try www.bakerscatalogue.com and look for English muffin rings or just muffin rings. I ordered a couple of more sets (sets of four) a few days ago and they had to backorder. When I bake, I bake a lot of stuff and freeze so I can time my baking when the weather is cool. We live on the coast and are cool a lot of the time, but this spring has been very warm and we don't have air conditioning. We live on a canyon and get a breeze, most of the time, from the ocean. The Bakers Catalogue told me the rings will be in on May 28 and they will ship then. This really works for me and my family. Shirley

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WRONG.   I had a happy few months between Late March and August that seemed swell, except that I couldn't quite enjoy things like I used to, and I was saying things to my online friends that made them shy away from me. I was convinced at this point that I was just going crazy. My mother is schizophrenic so I just sort of took it as is and was getting ready to tell my doctor and see if the symptoms would go away if i stopped the pills. I didn't do this in reality, as a matter of fact, I told the GP I felt great and she suggested that I increase the dose from 10mg to 20mg. I didn't do this for a while, but I got into an argument with someone that I was just starting to become friends with and decided that enough was enough. I popped that extra 10mg and was ready to crank it up a notch to keep the depression at bay. It seemed to be working, but about a week later, I began to develop a burning pain under my right rib. Uh-oh! I started to google again, but my anxiety was still pretty much under control. I tried to convince myself I had colon cancer, but it didn't hit me hard until I told the doctor I thought the pills were causing the pain and that I was going to stop taking them. This is pretty much where things took a turn for the worst. One day, after I had a couple corn dogs and french fries, I went to the bathroom to find that my stool was yellow and there was blood. Immediately I panicked and called my GP. A lot of things have scared me these past few months, but none more than that instance. The occult blood test came back negative, what do you know. I was pretty healthy at around 147 pounds, my average weight. I told myself at that point that I would turn my life around before things got any worse. I wanted to go vegetarian and avoid meat for the rest of my life. That seemed like the best option at that point. Well, I was wrong, because I was probably b12 deficient, and where does b12 come from? Yeah.... Well, it probably wasn't colon cancer, so what else could I convince myself it was you ask? Pancreatic cancer. I rolled around in bed, night after night, feeling extremely tired, and at the same time, not being able to sleep. When I closed my eyes I had visions of what my organs would have looked like with cancer spreading everywhere. Other times I would envision my own funeral 2 months later after a very painful death. I was very spaced out. It was beyond brain fog. Not only was I so bloated I couldn't eat, but I just made it worse by taking immodium. After that it was god awful. If I was dying, I just wanted to know what was wrong with me, if I had any fighting chance at that point. I think I went down to 136 at this point. I got the blood test and was prescribed a different antidepressant by my doctor. I waited until my test results came back to take it. By that time, I had dark circles under my eyes and white patches on the insides of my cheeks. I came back to get the results of the test, and to my surprise there was absolutely nothing wrong with me (at least that could be seen from my blood). I already started eating meat again by this point. WBC 8.7 (normal) RBC 4.94 (normal) I wasn't even anemic. I swore that my skin started to yellow. I was constantly checking my eyes and suffering. I decided this was the last straw. I started to take the medication the doctor prescribed me, and I felt great! But a couple days later, I took the full dose and woke up the next morning, not being able to breathe and with a super fast heart rate and dilated pupils. This was my first time in the ER. The docs were dumb as rocks. They told me that it was "just anxiety". I couldn't even feel the move the left side of my body. I nearly died, and those kooks told me that I had anxiety! They made me sit in a chair for 30 minutes while the reaction went away! (not to mention I got the bill recently from that ridiculous debacle and they're trying to charge me $4000 for letting me in the door and sending me out.)   Anyhow I'll summarize the next few months between the ER incident and now, including a 2nd time I landed in the ER, wowee! -Lost 6 more pounds between that point and about a month ago. -Kept taking paxil and had several more reactions similar to the one that put me in the ER. -Learned about b12 deficiency and was convinced I had pernicious anemia for a while. Taking multivitamins staved off some of the symptoms, including the bloating. -Some mulitvitamins I bought actually made me feel worse including making my joints hurt, although this may be actually due to wheat, as i've learned -Fatigue became progressively worse. I've got Lymph nodes raised all over my body and I was sleeping most of the day before I stopped eating gluten entirely -Was constipated for days on end. My bowel movements improved with experimentation, although I still couldn't figure out what the problem was. I knew that things like French Toast would make my stomach hurt, but I didn't draw the conclusion because I was convinced that fatty foods would help me gain all that weight back (It obviously didn't. As a matter of fact it was probably why. I'm still sitting at around 132 but at least I'm not dead or getting worse from what I can gather.) -Extreme brain fog until I started taking large dose of sublingual b12. I play a lot of video games and my coordination was god awful.  -Took a non-sublingual b12 pill which made me bloat big time. I should have checked to see if those pills had wheat. -My hands and feet felt like blocks of ice, and my feet burned when I got in the shower. -Developed Tachycardia. I'm not sure when, but my resting heart rate is unsettling. Doctors said nothing about it -Diagnosed myself with several cancers and had several panic attacks which I used my b12 tablets to quell. -Tried to take Elavil again, and woke up with a strange feeling in my left arm, so I stopped taking it.   I ended up in the ER for the 2nd time a few weeks ago. This time I was sure I was going to get the answer I didn't want to hear. "We've examined your chest X-ray and found cancer spreading throughout your body" or something along those lines. I knew that there had to be something going on. I went in there for chest pain, but I had to tell the GP about what was going on. The weight loss, the abdominal pain that mysteriously disappeared months beforehand after I took the pills. He suggested that it must be some sort of malabsorption/malnutrition that was doing this, and I was convinced that an H Pylori infection was the cause. Anyhow, my chest X ray came back normal, as did my blood test, and when I got home, my grandma suggested that I look into Therapy. (as if that would somehow help with the chronic fatigue and other debilitating symptoms) I had nobody else to turn to, so I emailed my grandma and told her everything that was going on. She told me that she thought I had celiac disease, and so far, the results aren't too bad. I've gotten "glutened" a couple times so far, but my constipation is gone, and I've gained a little bit of my weight back. I'm not even sleeping as much as I was. I'm still going to see a gastro, a dentist, and a derma about my more serious concerns, but overall, I don't feel too crappy. I've even got my appetite back. Anyhow, if you've made it this far, I'm glad, as it has been a really bumpy ride for me. I've still got a lot of health anxiety about cancer, but I finally feel like I'm on the right path. I didn't even think I would be alive right now, especially not at 2 in the morning, with only minor aches and pains. I hope I can eventually get diagnosed and get used to this place.        
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