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 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 Celiac.com Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity
The Cinderella Breakfast in the Castle can be really hard to get into from what I have seen in the travel guide books. However, breakfast with Winnie the Pooh, Tigger, Eeyore and Piglet at the Crystal Palace (right on Main Street) was a great way to get things started with my 5 year old grandson (Tyler), who had a phobia about characters....but "eating at Pooh's house" was an okay idea. We've just learned that Tyler is gluten intolerant, like his Nonny (tyki), so he is still adjusting to not getting McDonald's cheeseburgers and pizza, so a gluten-free trip for him was a bit of a challenge because he's not used to eating gluten-free yet.
The Priority Seating allowed us to get in the gate at opening, and walk to the Crystal Palace, and we were taken to our table as soon as we got there. The Priority Seating card already noted we had dietary concerns and the Chef was notified we had arrived. While our server got us some juice, Chef Joseph came out and got the details on our dietary restrictions, and told Tyler he could fix him some "panacakes" and filled us in on everything that was okay on the buffet line. All the "bread products" were on a seperate serving bar, which helped minimize that cross-contamination issue with buffets. The Winnie the Pooh characters were a great way to break the ice with the character phobia as well.
Tyki was in Disneyworld Orlando with her 5 year old grandson in August, we are both on gluten-free diets. The folks at Disney were super-di-duper. We started the day with breakfast at the Crystal Palace in Disneyworld, for breakfast with Pooh, Tigger, Eeyore, and Piglet. I had called ahead for Priority Seating and let them know we needed gluten-free consideration. When they seated us they told us the Chef would be right out. Chef Joseph came by, asked a few more questions, like dairy allergies, and some of the other sensitivities we all see mentioned here on the boards. Once he was clear about our restrictions (we are lucky, just gluten-free), he asked if we wanted pancakes or waffles, and told us which items on the buffet were okay, and which to stay away from. Basically we just had to stay away from the bagels and doughnuts, which were on a breakfast bar seperate from the fruits and breakfast meats. By the time we came back from the breakfast bar, Chef Joseph was there with our Mickey Mouse shaped "panacakes." He also came by to see if we wanted seconds.
For dinner we made Priority Seating arrangements at the Liberty Tree Inn, another character dinner. Yes tyki spoiled her grandson rotten. We had no sooner sat down than Chef Amber came out and double checked with us as to what food sensitivities we had. Their family-style Thanksgiving meal was almost entirely gluten-free anyways, we just skipped the macaroni and cheese, but there was plenty of other food that was all gluten-free....and the rice rolls...... . Tyki had forgotten the pleasure of hot rolls with her dinner in a restaurant.
For dessert, the standard dessert was a cherry cobbler, which was not gluten-free. So Chef Amber fixed us our own dessert, a delicious chocolate brownie cupcake (still hot from the oven) with a scoop of ice cream on top and whipped cream. This whole concoction was surrounded by blueberries and strawberries and drizzled with rasberry and chocolate syrup. You should have seen the folks at the other tables drooling over our gluten-free dessert.
We thanked Chef Amber for all her care during our meal, and I just had to ask if there was any way I could get the recipe for the rolls. She brought me her card, with a website for ordering the rolls, and her e-mail address so I could ask for the recipe for the dessert once I got home.
The rice rolls are actually from Cybros Inc. Disney gets them in and freezes them, then just a short time in microwave for delicious hot rice rolls for their gluten-free customers. Their web link is Cybros Inc.. They offer other items beside gluten-free foods, but have a decent catalog of gluten-free items. They require a minimum order of 8 items, so I'm trying a few things out, the rice rolls were at the top of the list, mock rye bread, lemon cookies, peanut butter cookies, rice bread, rice bread nuggets, rice and raisin bread. The mock rye tastes very much like rye bread, and has a wonderful consistency. Cybros calls you before shipping to make sure the delivery date is convenient to you. They have no preservatives in their products so they recommend freezing it upon receipt.
Disney got a double thumbs up here from tyki and her grandson.
My uncle does not specifically get mouth sores, nor does he get diarhea. However, within 8 hours of eating wheat, rye or barley, his face and arms break out in a rash of blisters.
Diarrhea and stomach pain are not the only signs of celiac. The mouth sores you have could well be the dermatitis symptom.
If the new blood tests were for the antibodies, you very well could have tested negative, because your time being gluten-free had allowed your body to heal.
I had the blood test done last fall, and my test came back negative, it would be real easy to tell myself see the test was negative I don't have Celiac. But the truth of the matter is, the intestinal problems I was having before the test had diminished significantly in the months just before the test, when my gluten intake had been diminished. And the week before the blood test, I ate gluten at every meal to test the theory, and by the time I went in for the blood work, I couldn't sit in the waiting room for more than 15 minutes without a trip to the bathroom.
When I showed the family doc the info about Celiac, he agreed to run the blood test, but he told me before I left the office, "The food challenge has already given you the answer. Your body cannot tolerate gluten, and it thrives when you eliminate gluten." So, I don't have a 100% iron clad diagnosis of Celiac, but I know my family history, grandmother couldn't eat wheat, uncle has Celiac, Dad has faced the fact that he has it to some degree, and we suspect many others in the family have it but won't admit it. I have a 1 in 20 chance of having the Celiac genes....and I have the symptoms. I have Celiac, I just don't have to pay $300 for a DNA test for it.
I'm in a special club in my family
I have Celiac
what a heritage.
1. Do I have Celiac Disease? Yes
2. Type 1 Diabetes? No
Just a reminder, the answer to the first question will be skewed. The audience here on the Celiac Board is going to be heavily weighted with people with Celiac Disease since that is who the board is designed for and the percent of people answering yes to the first question will be much higher than in the general population.
Have told a bit of my history in other posts....but going way back....my paternal grandmother was gluten intolerant (even if we didn't call it that) and a devout Roman Catholic. In fact, she worked as a cook in the convent after my grandfather passed away.
Anyways, her solution to not being able to eat wheat, was that she had her own small silver chalice (the cup of the chalice was no bigger than a thimble). She would take the chalice to the Church before Mass (we always had to get to church early when she was visiting) and talked to the Priest before Mass to explain her special circumstance. During the Mass, the Priest would put some of the wine in her Chalice and that was how she received Communion (and that was before us Roman Catholics started having the congregration receive from the cup). Then we stuck around after Mass so she could retrieve her chalice and wrap it back up until the next week.
For all I know my "nutmeat bread" could be your potica. You see my maternal grandfather immigrated to the US from Morovia (part of the Austro-Hungarian Empire). He liked to refer to himself as a Bohunk. Part of his family lives now in Prague.
It was his mother who taught my grandmother to make the nutmeat bread. With the way so many things were Anglicized when they came to the US, my great-grandmother may have just translated the name of what she was making to be more understandable to my grandmother. When they arrived in the US my grandfather's name was changed from Josef to Joseph, and his mother's name was changed from Josefa to Josephine.
So perhaps instead of clinging to the name potica, she just said she was making nutmeats and bread, aka nutmeat bread. A variation that the family used to make (unfortunately I didn't get the recipe for the filling) was to use poppy seeds instead of ground walnuts.
After writing this, I looked up potica on the web and read through several recipes, the filling I am using is not quite as complex as the recipes I saw on the web, but it looks amazingly like what I have been fixing for years.
My meals both directions were a boneless grilled chicken breast (not overcooked), fresh vegetables, fresh fruits, a gluten-free cookie, and a cinnamon rice cake and margarine.
As I said, others who were getting standard meals were getting a lasagna meal with a dinner roll. The pasta would have made it inedible for me. The other passengers looked on enviously as we ate our fresh pineapple slices and strawberries.
I used the Gluten Free Pantry Sandwich Bread mix through this past holiday season. You see, tyki's favorite grandmother taught her years ago how to make nutmeat bread (its more like a bread roll with ground nuts where cinamon would be in a cinamon roll) like her mother-in-law from Czechoslovakia had taught her.
Nutmeat bread for the holidays is a family tradition. From the time I figured out I was gluten intolerant, nutmeat bread was the thing I was most upset about. I am the only one in the family that makes it, and I really didn't want to do without. And it was making me angry that I would make it and not be able to have even one piece.
My hubby convinced me to try the Sandwich Bread mix, and it was a pain to roll it out between sheets of plastic wrap.But once the dough was rolled out, the ground nuts, sugar, cinnamon, and raisins were spread around like a blanket on the dough and then rolled into a long thin loaf. The rolled loaves were very fragile when we slid them onto the baking sheets. But as they baked, they smelled just like I remembered nutmeat bread smelling.
I carried fresh baked loaves of nutmeat bread to every family gathering this Thanksgiving and Christmas. Guess what.....no one in the family could tell the difference until they saw me take a piece of nutmeat bread. Then they all said, "but you've been so careful about being gluten free." Then I just smiled and said, "Yep, and this was made with a gluten free substitute."
I was able to use the mix to substitute for a family tradition, and keep the tradition alive. On my side of the family, it helped keep everyone a little healthier, you see my dad is convinced that now that I made the connection, he can see signs that others in the family may have gluten intolerance at the root of some problems they have had and couldn't figure out.
I agree, American Airlines does a super job. My husband and I went to Hawaii in November. We called the 800 number a couple weeks before the trip and I ordered gluten-free for me and low calorie for him. We also called the day before our trip to make sure the meal choices were noted. Then when we boarded the plane we let the stewardess know where we were sitting (someone else had been sitting in our seats when we boarded) and everything was golden from there.
The gluten-free meals were good and tasty and included a rice cake in place of a dinner roll you would expect in most meals. They also included some tasty gluten-free cookies (the packages came home with me to hunt for a source). And hubby's low cal meal was a lot like mine, except he got a dinner roll instead of the rice cake.
We had the same sort of experience both directions on our trip. I got gluten-free meals and they provided some of the gluten-free cookies for the snack time as well, since I couldn't have the pretzels they were giving everyone else. I'm also glad we called ahead. Apparently November was pasta month. The others on the plane had lasagna for their meal, which means I wouldn't have been able to eat it at all.
Father's side -
Scottish Grandmother (years of people thinking her inability to eat wheat was all in her head but they played along to keep her happy).
Irish Grandfather - really don't have health history on him, he was killed in an auto accident when I was young.
Paternal Uncle - HD, but at 75 he says he's not changing his diet...he just weighs how much he wants the gluten item, against the discomfort of the rash. He says at his age, somethings gonna get him, why make himself miserable to delay it further.
Dad - Adult onset lactose intolerance, and "vague issues" resolved when he cut back on bread when he went on Atkins diet.
Mother's side -
English Grandmother - Adult onset diabetic
Czechoslavakian Grandfater - He was in immigrant to the US, complications from Parkinson's took him at the rich age of 95.
Mom - Adult onset diabetes
I don't have blood test diagnosis, but my doc is convinced from food challenge that Celiac is the answer to the problems I have.
Daughter says she has some minor problems when she eats wheat products.
Grandson was tested for autism (came back negative) but may be borderline ADHD. His pediatrician has taken my family history into account and decided to NOT complete grandson's immunizations. Some of the vaccinations are wheat based.
When I first figured out that celiac disease and gluten were causing my problems, there was a bit of relief to know what the problem was. However, that was short lived. My hubby and I made a commitment to go gluten-free for my health. We went through the kitchen and moved everything that had gluten in it to a seperate cupboard (when the Boy Scouts did their "Scouting for Christmas" drive, they got boxes of goods from our house. We purged the kitchen of foods with gluten (except hubby's individual serving sized diet meals - he's been on a special diet and lost 115 pounds this year).
Our next step was a trip to the grocery store. Well, it turned into a number of trips to the grocery, because unexpectedly I had emotional meltdowns in the store. I would think of a meal to fix and start to gather the ingredients for the meal, only to be met with everthing I knew to use having gluten in it. I was devastated, how could I hope to feed myself, let alone my husband when I couldn't come up with a single healthy meal without gluten. We couldn't go with just salads for the rest of our lives. At least twice I left an empty shopping cart sitting in the middle of the grocery aisle and left the store in tears.
Eventually, we found a few options...and our options have gradually expanded. For my lunches at work, I spend about an hour on the weekend preparing my own personal frozen meals (Johnsonville Italian Sausages (sliced thin), with stir-fried peppers and onion, and a serving of rice, seasoned with Lee & Perrins and some Wine Vinegar). After the holidays we are going to buy a freezer so we can have someplace to store pre-prepared meals. I bought soup bones from the butcher and boiled them to make beef stock (since boullion cubes contain wheat) and have the broth frozen and ready to be made into soups this winter.
I still have my rough times, times I don't want to deal with thinking so hard about what I CAN have. Its great at those times to have something already made in the freezer that I can throw in the micro, just to get the meal onto the table.
I've also always been the family holiday baker. I'm the one who has carried the family tradition recipes forward. As Thanksgiving approached, I went into meltdown again. I couldn't have the traditional treats, and had no desire to cook up things that would just remind me of what I couldn't have anymore. My hubby stood by me, and encouraged me to experiment, fix the recipes in a gluten-free mode and test the results on his office. I fought the idea, I didn't want to settle for second best, but eventually to prove to him it wasn't worth the effort I did it. He took the treats into the office and was told that if he hadn't said it was gluten-free, they wouldn't have known.
SO, before heading to my parent's for Thanksgiving, I tackled my grandmother's Nutmeat Bread using gluten-free Pantry's Sandwich Bread mix, and made up a gluten-free Pumpkin pie, and a tin full of coconut macaroons. Everyone was happy to have the nutmeat bread, they had no problem with it being gluten-free. The pie was gone in a flash, and the kids couldn't keep their hands out of the cookie tin. It was just like before I heard of Celiac.
The results at Thanksgiving were enough to give me confidence and I entered my gluten-free cookies in an office cookie competition for Christmas, and won. My dad talked with us at dinner and touched my heart. I made the link between my medical issues and celiac disease because of preparing for their 50th wedding anniversary, and have shared what I learned with the family since July. What Dad said was that, he admired my resolve to go gluten-free and would do what he could to support that. Then he turned to my grown brothers and sisters and told them, "Your sister is not the only one in the family that this effects." He then went on to say that my research had led him to look at his own health issues and discovered that he too is at least sensitive to gluten and milk, and that Mom feels better now that she has been on an Atkins diet and has cut out bread from her diet. He encouraged each of them to take a look at any lingering health mysteries they or their kids had, and explore the possibility of tracing it to gluten intolerance. He now knew that his Mother's inability to eat wheat (never heard the term Celiac, but we are convinced that was the issue) was not all in her head, it was real, and it was something we had inherited from her. My parents aren't going totally gluten free, but Dad is cutting back his wheat consumption to keep himself symptom free.
I still get down when I crave something and find out it has hidden wheat, but I'm beginning to deal with it better. Hopefully your wife will get back on track.
Like the others have said, if the grandparents won't adjust and cooperate with the gluten free requirements then you as the parent need to look out for your teens welfare. Perhaps this will give you a slightly different perspective:
If the grandparents had handguns laying around on the coffee tables, and a candy dish full of ammunition, would you let her spend the weekend there?
How about if they encouraged her to drink beer and wine while she was there?
How about if you knew they were involved with drugs?
What if they were child abusers?
As a parent your responsibility is to watch out for the welfare of your children. The above examples are extreme, but, if you let your child go to stay with the grandparents in the above examples, you would be risking the child's welfare. By not respecting your child's gluten intolerance and adjusting their meals during her visits, the grandparents are putting her health at risk, just as surely as if they were filling her juice glass with wine or rum, or handing her a loaded weapon. Don't put your teen in a situation that you KNOW puts them at risk.
Now, the other comment is directed toward your second post. Where you said "You would think she would catch on" and "I sure hope she gets it together." If your daughter is in denial, hoping and waiting for her to "catch on" give her room to stay in denial. Be direct, make the connection for her. Tell her "The itchy scabs on your face and legs are from eating gluten." Don't wait for her to make the connection, it took too many of us too many years to find out what was causing our problems. Celiac is a difficult diagnosis to make. You know what the problem is, lay it out for her, over and over again if that's what it takes. Please, don't sit back and hope she gets it together. She needs you, with the experience and the knowledge to help teach her. This is not something you can let her learn from her peers, or figure out on her own.
I don't mean to come down hard on you, but you do your daughter a disservice if you aren't standing up for her. Protecting her from those who don't accept the diagnosis and helping her to accept the diagnosis and make those connection, that is your responsibility as a parent.
My grandson is not showing any signs of celiac, yet when I figured out that gluten was causing my problems and got my doctor to agree that I had celiac, I wrote a letter for my daughter to give to the pediatrician. I don't want my daughter to have to struggle to figure out why something is bothering her son, and if having the info about celiac helps the doctors, then I have helped my grandson. The family history of celiac disease is in his medical records, and his pediatrician has decided that with the family history, there are certain immunizations my grandson will not be given, because they are wheat based.
I am recently self-diagnosed with an anecdotal agreement from the family doctor. Luckily my side of the family dealt with this with my grandmother, and I also have an uncle with celiac, so acceptance isn't a problem there. However, I will see how things go with my in-laws over the holidays. We've tried to explain it over the phone, but I really don't think it has sunk in to my mother-in-law yet. So, I am heading there for a week long visit, with lots of my own food in tow, at least we are driving and not flying, so taking stuff with me won't be as much of a problem.
Being open and up front is the best way to get the message through. Your posts here show you are concerned for your daughter. I may have been off-base with how I read your posts, but I really felt I needed to reinforce the responsibility to watch out for your child's well-being and helping her face her health issues.
Tyki lives in Dayton Ohio, and our local Meijers are also carrying several of the Gluten Free Pantry mixes. Chocolate Truffle Brownie mix - family at a picnic didn't even realize they were gluten-free. Cornbread muffin mix was good as well. Tyki has also picked up the favorite sandwich bread, Brown Rice Pancakes Waffles & Irish Soda Bread mix, Old Fashioned Cake and Cookie Mix, and the sandwich bread mixes to try.
Meijers is also carrying Tinyada pastas, and a few other gluten-free items. Found them in the grocery section very near the mainstream pastas. They had the mainstream pastas, then organic foods, with the gluten-free things mixed in.
Well, its been two weeks, almost to the day. I had a voice mail from the docs office yesterday and I called in this morning. The blood test results are back and they were negative.
Well, now that was 2 weeks of waiting to be no further along. Of course from reading things on the web, I understand that really all that tells me is that there wasn't serious damage to the intestines at this time.
Now its time to decide if I go ahead with the Enterolab test, or just go undiagnosed and dive into being gluten-free.
I did venture into some gluten-free baking the other night. Made up a batch of cornbread muffins with the Gluten Free Pantry Cornbread Mix. They came out pretty good.
I had not gone gluten free prior to the blood test. I had had a significant drop in the amount of gluten I was eating, because of cutting the fast food and pizza out of our routine for my husband's weight loss diet, which meant I was fixing more salads, veggie casseroles, and the like. There had not been a conscious effort to go gluten free, and in fact as I look at the ingredients in the meals I have been eating, wheat has continued to be listed as an ingredient in just about everything. What changed significantly was I stopped having pizza twice a week, hamburger buns, subs from Subway, and to keep sweets out of the house I wasn't making cookies and cakes (to help hubby resist temptation), so the wheat consumption dropped significantly without actually going gluten free.
Over that 3 months the diarrhea I had been experiencing gradually lessened and nearly disappeared, but I was a long ways from being gluten free. To test the theory about the diarrhea being caused by gluten, I started adding toast, doughnuts, sandwiches, or a slice of bread and butter, and some wheat pasta with each meal, thereby purposely raising the gluten content of my diet.
I agree, I think the blood test and the eventual endoscopy are formalities, I'm 99.9% sure I have celiac disease. That doesn't make it any easier to come to grips with this. I have had more emotional meltdowns in the last few days than I can remember for a very long time.
Hubby is being supportive and I love him dearly, but we're both feeling a bit lost about where to start. It's been recommended that I stay on gluten until we finish with the tests and start learning about the gluten-free diet. So hubby tried to help, and while we were at the grocery store, he picked up packages of our kitchen standards (for favorite family recipes) and read the ingredients. It was so depressing, the longer we were in the grocery store, the longer my list of "can't haves" grew and I went into meltdown by the time we left the store.
The next night, hubby decided we should start smaller, so he started going through what we have in the pantry, and my list of "can't have" went up even more. Then he talked about needing to get rid of the toaster, cuz we wouldn't be able to decon it from all the gluten-laden crumbs, and my favorite cutting board, and it piled higher. Then he added that he has decided that since there are just the 2 of us in the house, it makes sense that we will both go gluten free....and I fell apart again.
He tried to help with "it could be worse"....and I know it could be worse, but right now, it seems like the worst news I've faced. Right now I'm having trouble putting a positive spin on it. I've always been "the good cook" in our extended families, my mother-in-law loves that I have learned how to make all the family's traditional specialties (they all contain loads of wheat) instead of being afraid of the kitchen. Now I find myself, at 48, unsure of how to feed myself, and clueless on how to cook with these wheatless flours. It just seems like such a monumental task.
I know its an elephant, and the way to eat an elephant is one bite at a time. But I don't know where to take the first bite. And this emotional roller coaster isn't helping me to think clearly.
Hopefully, I can lean on the pros out there while I re-learn my way around the kitchen.