SilverSlipper

I did let them know. I was non-confrontational and told them that sometimes items can be hidden and it's really tricky to figure out. They were upset because she was sick, but I told them that it was a learning curve like everything else and I've made her sick unintentionally before as well. Then I invited them to our Christmas party and told them that we were probably staying home this Christmas to start some family traditions. My daughter is beyond excited about our holiday party. I've only had one snotty response from my sister in law (but they are weird anyway) and they said they wouldn't attend. Their loss, not mine. I'm asking everyone attending our party to bring a gift or a gluten free item for a family we're adopting for Christmas. The son has Celiac Disease and I don't want him to have the same struggles that my daughter has had. So, we're turning a bad thing into a positive (I'm a 'make lemonade' kind of gal!).

I'm looking for a good substitute to make sausage balls. The recipe I used in the past was 1 lb sausage, 2 cups cheese and 2 - 3cups bisquick.

I've used Pamela's baking mix and it tastes okay. I used gluten-free bisquick today and they are really hard and heavy.

Does anyone have any suggestions for this? I'm trying to pull some holiday recipes together.

Thanks!

My daughter was glutened recently (and I suspect carelessly) by an item that my in-laws told me had been prepared one way, but was actually prepared another way. She became ill with stomach cramps and diarrhea.

Should I tell people when items they prepare make her ill? I worry that if I don't, they will think that small amounts are okay. But, I don't want to make anyone feel bad as I know they wouldn't do it on purpose. I'm solving the problem by cooking all food for her for a while, but I'm just curious what others have done.

I think after diagnosis, everyone rushes out to buy cookbooks and bean flour!

My suggestion would be to find one or two meal 'plans' that you really like and can do easily. Write those on an index card and put those recipes (if needed) in a binder. For me, it was broiled pork chops or chicken breast, steamed broccoli and rice. (Yes, you can see what a maestro of creativity I am!). I made sure those ingredients were always on hand. Making the switch to gluten free cooking was very frustrating and (honestly) very stressful for me. I was a bit resentful of having to change the way I cook to accomodate my daughter's medical needs. (I realize how horrible that sounds.)

As I expanded and figured things out, I increased my index cards with brand names of gluten free items (such as taco shells and mixes) that she could eat. Once I had a full week of items, with supplies on hand, I felt free to experiment a little.

What we typically do now is take our recipes and convert them to gluten free. I do use gluten free cookbooks, but I equally use regular cookbooks and just make adjustments. I only buy ingredients for one new 'experiment' at a time because if I buy too much, I've blown my budget and I don't know what to cook for dinner.

I'm glad you finally have a diagnosis and hope you will feel much better soon!

As far as we know, she hasn't any other allergies. As part of her testing a few years ago, they checked for a lot of medical conditions and did extensive allergy testing. It's possible that something could be developing but we haven't identified it yet. Only the ham. However, she has had ham during those times that she didn't react to (once one that I cooked and another time cooked by my mother). (I should add that my mother lives next door to us - several acres over, but our closest neighbor - so she's quite good but not perfect of course).

DH and I have decided that from now on we will host holiday 'parties' at our home rather than going to other people's houses. Both of our parents are divorced so we try to get to all four homes. It's difficult and exhausting and I still cook a ton. I think it will be easier to have a huge gluten free get-together. That will also help with people who look at what I cook like it might bite them (and I really am a good cook - most of my gluten free items will fool people if I don't tell them it's gluten-free in the first place). And I had my Dad grumble about the cost of things (even though my step-mom has celiac disease, she doesn't react much so she ignores the diet). I'd like to show people how great gluten-free food can actually be and maybe they wouldn't act so weird about it.

I think I'll just take care of the ham from now on and tell her to avoid it at other people's houses if she happens to be over there.

My daughter is 9 yrs old and has been gluten free for about three years now. She's extremely sensitive to gluten but isn't considered 'super sensitive'. Her level of sensitivity gradually increases and things that didn't bother her a year ago we now discover actually does have gluten, just hidden.

I'm obviously missing something with ham. She's been sick the last three times she's eaten ham. One was a ham that I bought at Publix. I knew not to buy a honey glazed ham, but this was a small packaged ham that I bought to use for breakfast. She became ill a couple of hours after eating (which is how we catch things) and stayed sick with diarrhea and stomach cramps for about 5 -6 hours (which is a mild reaction which usually indicates that it's cross contamination or a hidden item). The next time was a ham that my mother bought and cooked. She is great at checking things and said it was safe. (I never saw the wrapper so I don't know what was in it). My daughter followed the same pattern - sick in a couple of hours for several hours. Yesterday, we were at my father in law's house. I had already told him that she was reacting funny to ham and he told me he was going to buy one and season it himself and cook it himself. After the meal was over, I heard my MIL tell another family member that someone had bought the ham and given it to them. (I don't think FIL lied, I think their intention was to cook and it didn't happen that way). Since my daughter had eaten it, I didn't say anything because she can 'think' herself sick at times if she's worried about gluten. After getting home, she became sick to her stomach and woke up this morning with cramps and diarrhea.

So, what ingredients should I look for in hams that could be triggering this? I know that the glaze on hams contains wheat and I know that at least two of those hams didn't have that. I really want to figure this out because I enjoy buying ham occasionally and using it for breakfast and mac n cheese. Help!

I think you're doing great! We easily spend twice that much however, I try to work in medications with my groceries and my oldest is severely affected by autism so that affects my grocery bill as well (she's quite picky). My middle daughter is the one with celiac and we all eat gluten free.

We buy a lot from amazon. They usually put some gluten free stuff on special each month. There's a page that tells you all the specials and I hit them hard when they roll around. For example, this month Mrs. Leeper's rice pasta is on sale. I forget how much it is at the store, but I used the code on amazon to bring the price down, then signed up in the subscribe and save to save even more (they are super easy to cancel online). A case of pasta gluten free is $20 which is not quite $2 a bag. I bought two cases of the rice spirals (which we love for spaghetti) and one case of the corn elbows (for homemade mac and cheese). I also buy chebe and we use those for breakfast, roll them into sticks and dip them in spaghetti sauce and even make little sandwiches out of them.

We have a big garden in the summer and I can and freeze a lot of items. We don't do well with canned veggies so I've abandoned them in the winter. Our family will eat raw veggies so we have meat, rice or potatoes and a veggie tray (with ranch dressing and hummus). I was worried that it would be too expensive, but celery and carrots are generally cheap and I add a cucumber and one expensive veggie like red bell pepper, sugar snaps, etc. So far, it's working well for us.

I buy Pamela's baking mix in bulk from amazon (it's on sale too this month but still expensive - less expensive than the stores though!) and use it for pancakes, muffins and dessert breads. Peanut butter cookies require no flour. I either buy a pre-made flour mix or use rice flour, tapioca starch flour and corn starch to make cookies. There are some flourless brownie recipes on the internet.

I just bought bisquick and I'm excited to see what can be done with it. Since my daughter is 9, I've been teaching her how to cook so she can help me out in the kitchen as some days I feel i live there!

I agree that Udi's bread is a must and their baguettes are great. I think I'll try another poster's suggestion and see if whole foods will give me a discount if I buy in bulk.

Depending on the area yuou live in, see if anyone near you sells eggs. (We moved to a rural area so we could be closer to relatives and have a garden). Our neighbor sells them to us for $1 a dozen - we scramble them, make hard boiled eggs for snacks, deviled eggs as a side dish and then in baking. I use easily 2 dozen a week and usually 3. The same neighbor lets me pick her 'extras' (blueberries, plums, some veggies). I realize not many people can do that though and neither could we until the past couple of years.

Good luck!

mygfworld, obxmom is right. Celiac Disease affects a child's ability to learn and qualifies for a 504. You may have to push a little bit, but it's absolutely do-able. ESPECIALLY since they use gluten foods to learn their academics. Put your request in writing with a thorough note stating that your child is diagnosed with celiac disease which affects their ability to learn, touch on what foods/non-foods contain gluten, how you have witnessed this in your child's classroom and how your child is excluded from learning activities with his typical peers. Go from the principal, to the school board (who should have a nurse that helps schools with these things), to your state's dept of education. Attach a doctor's note to all correspondence. Make sure you call it an autoimmune disorder rather than an allergy as schools do not have to accomodate allergies unless they are life-threatening.

We have a 504 for our daughter (2nd grade, 8 yrs old). This allows the cafeteria to provide her a gluten-free meal every day. I have to say the lunchroom manager is phenomenal. She shops for my daughter's food at a local grocery store and if my daughter dislikes something, she makes a note and knows not to buy that item again. I do feel guilty sometimes because her lunches are so much better than everyone else's. Depending on sales, she will occasionally get things like kiwi for her fruit or a side of avocado with her taco salad. The classroom keeps a 'safe food' box for her (that I provided) so that if a parent shows up with cupcakes, she gets a treat as well. She has unlimited bathroom visits and is allowed to leave the classroom without checking with the teacher in an emergency (she hasn't had to do that and knows that she absolutely cannot take advantage of these privileges). This summer, she ate a piece of candy that had gluten in it and became sick. She missed four days of school but we knew it would take several days after the first symptoms appeared. The school sent her classwork home the next day and she didn't miss a step with her academics. That was a huge benefit for us. Our pediatrician faxed over a note so that the absences were doctor excused.

I think a 504 is a great step so that teachers know exactly what they are dealing with on the first day of school. If she becomes ill, I want a teacher to know that she had a medical condition so they call me immediately if she complains of a stomach ache. I want the substitute teachers to know that she may have to use the bathroom at odd times of the day and it's okay. I want people looking after her. In return, I support the school as much as I possibly can. I remember them at holidays and I send tissue and hand sanitizer in year-round. It's a great relationship.

I'm looking for a little reassurance. My daughter is 8 yrs old (2 yrs on a gluten-free diet) and weighs 44 lbs. She's very small for her age. Our pediatrician says that she is about the size of a kindergarten kid (my daughter is in 2nd grade). She's a few inches shy of being 4 ft tall. Our ped is not overly worried at the moment as she is growing (she had quit growing for over a year which is how we started looking for a diagnosis).

I'm wondering if other kids with celiac disease are unusually small? I know they are typically smaller than their peers, but my daughter's size is sometimes unnerving. Could their be anything else going on that I should look into?

We use scandishake by axcan pharmacies for a weight booster for our daughter. Our gastroenterologist recommended it and it tastes really sweet - all of my kids like it (though only one is drinking it regularly).

You might want to try more frequent meals/snacks. At one point, my daughter had three meals and four snacks daily to try to increase her calorie intake. I would make sure that there is something she likes at mealtime even if other items are foods she may not care for. And, I have found that presentation is everything. Kids love 'cute' things. I bought party picks (Hannah Montana) and made small fruit kabobs. Tiny little forks (like you would see at parties for cocktail weenies) are a great size for dipping small pieces of vegetables in ranch dressing. I've also used clean ice cube trays and put small portions in each thing - veggies, fruits, lots of dips, peanut butter, raisins, yogurt, dry gluten-free cereal, gluten-free pretzels, gluten-free crackers. Dipping things seems to be great fun and a good way to sneak extra calories in. Banana chocolate milkshakes (with instant breakfast, ensure or scandishake thrown in) were a great bedtime snack.

Basically, make meals fun. Many parents try the 'they'll eat when they get hungry approach' which works just fine... unless you have a child who is underweight. Then, they kind of have the upper hand. The trick is to have it under parental control before they realize that they can demand whatever they want and you're a bit forced to give it to them. (Not saying that yours will do that, just in general). Small, fun things every few hours. After things are a bit more stable, start making the snacks smaller portioned and the meals a bit bigger.

My daughter is 7 yrs old and was diagnosed a year ago. She has done well on her diet and has gained some weight and grown a bit taller. She is followed by our pediatrician.

My question is whether I should take her back to the gastro for a follow up visit? Are there any tests that need to be done at this point? Co-pays are $35 for medical appointments and my oldest has autism. I have a third daughter as well (without autism or celiac). I have a total of eight appointments on my calendar over the next three months. I don't want to go to another one but I will if it's needed.

Jillian, that is almost exactly the level of confusion that my daughter had. Thank you for posting. Interestingly, my daughter did have rice dream that morning. My other daughter is allergic to dairy and drinks Rice Dream. I had poured it in the wrong cup and poured it into the other, filling the original cup with regular milk. I didn't realize Rice Dream had gluten in it or I wouldn't have made such a foolish mistake.

My daughter is 7 yrs old and has Celiac Disease. She does very well with her diet and isn't tempted to cheat. The school is on board and serves a gluten free lunch to her daily. Her teacher calls with any questionable items and other parents in the class are sensitive to her diet and call me for suggestions on party foods.

All that said...today she came home feeling fine. She ate popcorn and gluten free cookies (I made them myself and have made them before) for a snack. We had a playdate over and after dropping her off, my daughter suddenly realized that she had lost control of her bowels due to diarrhea. (She has never been unable to control diarrhea before). She was understandably upset, but I had extra clothes in the car and tissues - so we cleaned her up and went home. Her stomach was hurting, but she was hungry, so I made mac n cheese (gluten free, but I forget the brand). What was strange was that she kept saying that she was fine one minute and the next minute it was just there - she had no memory of soiling herself until after it had happened.

As dinner was cooking, our therapist left (my oldest has autism and we have a therapist over once a week to work on IEP goals). The therapist and I had been talking with the door open (cold air) while my daughter was on the couch and the therapist spoke to her and said she hoped she was feeling better. My daughter didn't answer, just laid there with her eyes open, looking sad. Thirty minutes later, dinner was finished and I told her to come eat. She asked me if the therapist was still there and I told her that she had left. She didn't recall hearing her say goodbye or seeing her leave. She didn't even notice her sister sitting on the couch opposite her because she asked where she was.

She ate a few bites and was really pale, but also really flushed. She told me she was simply too tired to even eat and that she had to lay down. I told her to go take a nap on the couch (which is where I park sick kids so I can watch them and still get things done). Ten minutes later, she was fine.

She has never had disorientation like this before. Is this part of Celiac or was something else going on? (I have no idea what glutened her by the way or even if this is a gluten reaction).

My daughter is 7 years old and has celiac disease. She seems to have most trouble with directly/indirectly ingesting gluten. As the months progress, her sensitivity seems to increase, but she doesn't seem to have problems with cross contamination... yet. (I'm telling you this so you can get an idea as to the amount of sensitivity she has).

We went to Bruster's today for ice cream. She loves mint chocolate chip and my understanding is that it is gluten free, though they don't guarantee that there won't be a cross contamination. I bought a large mint chocolate chip milkshake for us all to share and she drank it on the way home. She commented that the chocolate pieces were really crunchy which should've set off warning signs for me, but I didn't stop to check. When we got home, I noticed the chocolate pieces were very large but (again and foolishly), I continued dividing it up and set it out for the girls to eat. A few minutes later, I was drinking my share and realized that yes, the chocolate pieces were crunchy. I took the lid off and stirred to the bottom to pull out one of the larger pieces and realized that all the blasted chocolate bits were actually crunch bars (which do make her sick).

I took it away and immediately called Bruster's who said they would check and call me back. After a few minutes, the manager called me back and I explained that the chocolate was different and that my daughter's condition is one that she can't eat the crunch type bar. She looked and said that yes, she was seeing that there were crunch bars in the mint chocolate chip instead of the chocolate pieces. I was really afraid that I would be rude, so I told her that I would call her back in a day or so, but that I needed to take care of my daughter at the moment since she had already ingested it. She apologized profusely.

I told my daughter, who immediately burst into tears. She hates the stomach cramps and does so well on the diet that it really upsets me that someone changed an ingredient in something that she has been eating without problem. I gave her some digestive enzymes and I'm hoping that it helps. I'm furious with Bruster's and myself at the moment. I'm hoping that she won't have strong reactions since the cereal in that chocolate is not a lot and that the chocolate was only part of the shake. I might just be grasping at straws, but I think I'll cry myself if she has cramps again.

My daughter is 7 years old and very active for her age. She weighs between 38 - 39 pounds and is 42 inches tall. She was diagnosed in February of this year - her height was about the same, but at the time she weighed 34 pounds. Her gastro gave her a diagnosis of failure to thrive due to the Celiac Disease.

She adapted fairly well to the diet as she has always loved fresh fruits and veggies. The things that she misses (pizza, cheese biscuits, etc) I'm able to either bake myself or find mixes for. She never cheats although I have accidentally 'glutened' her a couple of times. The school is completely on board and we switched to her to eating lunch there a couple of weeks ago. They cook her food separate and heat it for her daily.

So I don't understand why she doesn't gain weight. The jump in weight after she was diagnosed happened fairly quickly and all at once and now we've "stalled" again. She eats three meals and three snacks daily. I know that individuals with celiac disease are usually low weight, but is her weight "normal" for celiac disease? And what happens if I can't get her weight any higher soon? I had set a goal for us to have her weight at 40 before school started. This wouldn't have put her back on the height/weight chart, but it was something that appeared do-able. It is such a struggle though.

She doesn't have other health problems and looks healthy (just small). Am I worrying over nothing? (Her next check up with our doctor will probably be next month).

Thank you both I have digestive enzymes here that I use with my oldest daughter (who has autism and many food sensitivities). I just gave my daughter one and I'm hoping that helps. When I go to the store later (after my husband is home to watch the girls), I'll pick up some activated charcoal to keep on hand. I'm also going to see if our gastro can prescribe something to help with the crampings. She's had about three reactions since diagnosis and they all included some very excruciatingly painful crampings.

Thank you so much for replying.

My daughter was diagnosed in February/March of this year with Celiac Disease. She is 7 yrs old. She has very severe reactions to gluten in the form of abdominal cramping. Usually her diet is not a problem, but she had an infraction yesterday, I believe to Erewhon rice cereal. One of the ingredients is organic barley malt which I believe is a big no on her diet. She spent the entire night absolutely miserable (and I was miserable along with her since I didn't double-check the ingredients). Is there anything that can be done to make her feel better once we realize that she has eaten something she shouldn't? Thanks in advance for any help.