This is part two to the questions and tips on recording diet, part one can be found here.
What if I just can’t get two weekdays?
As noted before, we request two weekdays and one weekend day for each diet record because we feel this will give us the most accurate picture of your child’s diet. However, we understand that there may be reasons why this isn’t possible for you. For example, there are a few daycare providers who do not have the time or inclination to assist with this portion of the study. We do not want any of our TEDDY families to jeopardize their relationships with their daycare providers in an attempt to get this information! There may also be other reasons why you are unable to complete a diet record according to these specifications. If the ideal diet record of two weekdays and one weekend day is not an option for you, we do understand. The computer system mentioned before is unable to analyze days that are incomplete – for example, days with breakfast and dinner only, but no information about lunch and snacks. So our preference in this case would be to use days when the child is with you all day or with someone who is willing to help you keep track of what your child eats. If, at the time of the visit, you do not have all three days completed, please just bring us the days that you have. We can always work with you to get the remaining day(s) at a later (hopefully more convenient) date, or we can use the data that you do have. We would not want to waste the effort that you put into a diet record simply because it does not meet our guidelines exactly. And for those of you with children who will be starting school soon (or are already in school), we are currently working on some tools and tips for collecting diet information from the time your child spends at school. Please feel free to ask your clinician for an update at your next visit!
Does my diet record reflect a normal diet for my child?
Finally, some parents are concerned that the diet records they are giving us are unrepresentative. Possibly without even meaning to, they think they are giving their child foods that are more easily measured, or using recipes with fewer ingredients, to help them more easily report what their child eats. Of course, we all know that the idea behind the diet records is to provide the study with an accurate picture of your child’s eating patterns. And we would like to extend an extra thank you to those families who are making a conscious effort not to change their child’s diet for ease of reporting. However, if you do worry that changes like the ones mentioned above are showing up on your child’s diet records, please do not feel bad. Even though these kinds of changes may seem substantial, the truth is that those changes are probably not making as big of a difference at the micronutrient level as you might think. Your basic philosophies regarding food preparation and eating are still in place. A family who usually uses salt only sparingly will not add large amounts of salt to their child’s food on a diet record day.
Other related concerns involve the days on which a diet record falls. For example, we heard a lot of comments around Halloween that the candy eaten around this time of year really does not represent the child’s candy intake during the rest of the year. We understand this. It might help to not think of us analyzing any one particular day, or any one particular diet, alone. When we look at the data, we will be looking, not just at your most recent diet record, but at all of the diet records you’ve given us in the past, and all of the diet records that you will give us in the future. Imagine throwing all of these days into a big pot, and then adding all of the past and future diet record days that we have received and will receive from thousands of other children, and then stirring it all up. We will look at that big soup of diet records for our analysis, not at any one particular record or day. So even though your child’s diet record may have fallen on Halloween this year, someone has to represent Halloween in order to give us the bigger picture of TEDDY children’s diets around that time of the year. But there are many, many other diet records that we receive all year round from days other than Halloween, so those other days will be represented in our analysis, too.
Why am I doing this, again?
To conclude, we know that diet records can be difficult. We do not want you to regret your participation in this study because of them. Please, first and foremost, do what you need to do to maintain your sanity! Hopefully the paragraphs above will give you some peace of mind about what many families consider to be “imperfections” in their diet reporting. We at the TEDDY Study do not expect you to be superhuman when it comes to diet records. All we ask for is your best effort, and that best effort may look a little different from day to day, and from family to family. We admire each and every one of you for the help you give us toward the ultimate goal of preventing diabetes. The diet records you complete are an incredibly important step in achieving this goal. Researchers believe that certain elements in a child’s diet could possibly play a key role in determining whether or not a child with high risk genes for type 1 diabetes goes on to develop the illness. Unfortunately, we still do not know which elements of a child’s diet are the determining factors. We would love to be able to tell all of our TEDDY parents that, by increasing or decreasing their child’s exposure to certain foods or nutrients, or by altering their feeding patterns, they can improve their child’s chances of never developing diabetes. I know everyone in this study wishes that we had that kind of information at our disposal. But it is the work that you do in maintaining these diet records that will give us the best shot at being able to provide this kind of information to parents in the future.
Sincerely,
The TEDDY Study Staff
Thursday, October 20, 2011
Friday, September 9, 2011
Diet Records: A Note from the TEDDY Staff -- Part 1
On behalf of the TEDDY Staff, we want to thank everyone for all of the work you do to benefit this study. And we want to give you a special thank you for completing the 3-day Diet Records. Trust us, we understand that these can be tedious and labor-intensive. We know that they are always inconvenient, and often frustrating. And we want you to know that your work does not go unnoticed. We would like to take this opportunity to address some of the most common challenges involved in keeping the diet records.
I don’t know exactly how much my child ate!
First, we know that it is difficult to know for sure exactly how much a child eats. Many of us who work for TEDDY have children at home, too, so we see that not everything you give a child ends up in their mouth. We know that it is very difficult, for example, to estimate how much applesauce a child may have in their hair after a meal, and that you may not discover the ¼ cup of cheerios that mysteriously ended up in your child’s diaper until the next diaper change. All we can possibly ask from you as TEDDY parents is to give us your best estimate when it comes to the amount of food that your child ate. Of course, there will be some “human error” (as the scientific community puts it) involved with “self-reporting”, but this study is designed to accommodate that. Some of you may have no problem reconciling yourselves to this fact, but for the perfectionists out there, this may be a continued source of frustration. But please know that, from the standpoint of the study, estimates and “best guesses” are expected, and this will still provide us with the information that we need to reach important conclusions regarding the causes of diabetes.
What about daycare?
Second, we know that some of the meals that your child receives may be outside of your control. And not only that, you may not even have been present for some of the meals! By requesting two weekdays and one weekend day, we know that, for many of you, this requires getting information from daycares and schools. In fact, this is the idea. To get a really good picture of what your child eats, it makes sense to not only include the meals they get at home, but also the meals they eat away from home, especially if this is a regular part of their diet. A child’s diet is impacted greatly by who is offering them their meals, and a daycare may provide foods that are different than those you give your child at home. Some daycare providers do a wonderful job helping us with this portion of the study, and are even happy to be given the opportunity to participate in something they view as important. We have received feedback that giving a daycare provider some information about the study and what these diet records are helping to achieve may make them even more willing to help out. (How much information you share with your daycare provider is, of course, completely up to you.) Even the most enthusiastic daycare providers may need a little direction from you, at first, though. It is a good idea to tell them specifically what kinds of information we need. For example, tell them that we need to know how much of each food item your child ate, not just what was on the menu. They will feel less frustrated with the process if they know what is expected and can feel like they are doing a good job.
Other daycare providers, although they try to help, are unable to provide us with all of the details that we ask about. When reviewing your diet record, please know that we have to ask clarifying questions, but we expect that your knowledge of the meals that your child receives outside of your care will be limited. We never mind if you have to tell us, for example, that you don’t know how your child’s oatmeal was prepared because they ate that meal at daycare. We enter the diet records that you give us into a computer system that gives us very detailed information about the calories and nutrients a child receives throughout the day. Generally speaking, this computer system requires a great deal of detail regarding the type and preparation of foods in order to provide us with this kind of information, which is why we ask so many questions when we review the diet records. However, this computer system also has ways to accommodate some “unknowns”, meaning that meals eaten at daycare, even if you don’t know some of the specifics, can still provide us with very useful information. Foods eaten at a restaurant, or at a friend’s party, or any time when preparation details are not known, are entered in the same way.
The above post was written by a TEDDY staff member who is involved with the diet collection both locally and over all 6 TEDDY sites. Part 2 will be posted in a couple weeks.
I don’t know exactly how much my child ate!
First, we know that it is difficult to know for sure exactly how much a child eats. Many of us who work for TEDDY have children at home, too, so we see that not everything you give a child ends up in their mouth. We know that it is very difficult, for example, to estimate how much applesauce a child may have in their hair after a meal, and that you may not discover the ¼ cup of cheerios that mysteriously ended up in your child’s diaper until the next diaper change. All we can possibly ask from you as TEDDY parents is to give us your best estimate when it comes to the amount of food that your child ate. Of course, there will be some “human error” (as the scientific community puts it) involved with “self-reporting”, but this study is designed to accommodate that. Some of you may have no problem reconciling yourselves to this fact, but for the perfectionists out there, this may be a continued source of frustration. But please know that, from the standpoint of the study, estimates and “best guesses” are expected, and this will still provide us with the information that we need to reach important conclusions regarding the causes of diabetes.
What about daycare?
Second, we know that some of the meals that your child receives may be outside of your control. And not only that, you may not even have been present for some of the meals! By requesting two weekdays and one weekend day, we know that, for many of you, this requires getting information from daycares and schools. In fact, this is the idea. To get a really good picture of what your child eats, it makes sense to not only include the meals they get at home, but also the meals they eat away from home, especially if this is a regular part of their diet. A child’s diet is impacted greatly by who is offering them their meals, and a daycare may provide foods that are different than those you give your child at home. Some daycare providers do a wonderful job helping us with this portion of the study, and are even happy to be given the opportunity to participate in something they view as important. We have received feedback that giving a daycare provider some information about the study and what these diet records are helping to achieve may make them even more willing to help out. (How much information you share with your daycare provider is, of course, completely up to you.) Even the most enthusiastic daycare providers may need a little direction from you, at first, though. It is a good idea to tell them specifically what kinds of information we need. For example, tell them that we need to know how much of each food item your child ate, not just what was on the menu. They will feel less frustrated with the process if they know what is expected and can feel like they are doing a good job.
Other daycare providers, although they try to help, are unable to provide us with all of the details that we ask about. When reviewing your diet record, please know that we have to ask clarifying questions, but we expect that your knowledge of the meals that your child receives outside of your care will be limited. We never mind if you have to tell us, for example, that you don’t know how your child’s oatmeal was prepared because they ate that meal at daycare. We enter the diet records that you give us into a computer system that gives us very detailed information about the calories and nutrients a child receives throughout the day. Generally speaking, this computer system requires a great deal of detail regarding the type and preparation of foods in order to provide us with this kind of information, which is why we ask so many questions when we review the diet records. However, this computer system also has ways to accommodate some “unknowns”, meaning that meals eaten at daycare, even if you don’t know some of the specifics, can still provide us with very useful information. Foods eaten at a restaurant, or at a friend’s party, or any time when preparation details are not known, are entered in the same way.
The above post was written by a TEDDY staff member who is involved with the diet collection both locally and over all 6 TEDDY sites. Part 2 will be posted in a couple weeks.
Tuesday, July 26, 2011
Recording my child’s diet, how hard could that be?
Because I work for TEDDY, before C was born I knew about the diet collection. I even helped out during the training phase by recounting my own diet to be entered into the computer. But honestly, the most difficult parts of the diet collection seemed to be entering it into the computer and uploading it to the main diet database. I guess that IS the worst part from a staff point of view—little did I know how complicated the diet records could actually be!
At C’s first TEDDY visit when he was 3 months old, I knew in advance that there would be a 24 hour recall of his diet but I didn’t give it much thought. How hard could it be—C was exclusively breastfeeding every few hours—no measuring needed! When B said it was time to do the diet record I said confidently, “Just breastmilk!” Then she said, “OK, starting after midnight, what time did he first have breastmilk”? HOLD ON—I have to remember what TIME I dragged myself out of a deep sleep to feed my 3 month old? I’m trying to block out those middle of the night feedings from my memory! I don’t WANT to remember that my sleep was interrupted 3 times last night! It was then that I knew the diet record would not be my friend.
When C’s 6 month birthday rolled around we still hadn’t started solids and to be honest, I was resisting it because I loved being his only source of nourishment. Then I got the 3 day diet record in the mail. Flipping through the pages, I knew that I did not want to have to include bites of cereal that he may have eaten, or may have dribbled down his chin into the chubby folds of his neck. Problem solved—no solids until after the 6 month TEDDY visit!
When it was time for the 9 and 12 month visits I knew I had to bite the bullet—C was well into solids by that point and I was going to have to suck it up and record it. Fortunately he was pretty good at keeping it in his mouth by that point and the store-bought jarred food was easy to record. Maybe this diet thing was going to be okay after all.
Then we got to the 18 month visit. The first day of the 3 day diet I had such good intentions. I put all his food into a measuring cup before giving it to him. I even copied recipes to bring to the visit. On day 2 I was feeling so ahead of the game that I gave him his painstakingly measured food, neatly wrote it all down, and then turned around to smile at C in his high chair, only to see him feeding all the food I had so carefully measured to the dog!
It’s nice that the diets are only collected every 6 months now that C is older but I can already see the 2 year diet record will be a challenge. Often throughout the day C will stop his playing to pry open the pantry door in search of Cheerios or animal crackers. Sometimes he asks politely for them but he really prefers just grabbing the box, shoving in his little hand and taking out a huge handful, some of which makes it to his mouth and some that the dog snatches as it falls to the floor. I never thought I would give so much thought to the amounts of food my child eats!
Coming up next—a two or three part series of posts about diet collection tips from a TEDDY staff member
At C’s first TEDDY visit when he was 3 months old, I knew in advance that there would be a 24 hour recall of his diet but I didn’t give it much thought. How hard could it be—C was exclusively breastfeeding every few hours—no measuring needed! When B said it was time to do the diet record I said confidently, “Just breastmilk!” Then she said, “OK, starting after midnight, what time did he first have breastmilk”? HOLD ON—I have to remember what TIME I dragged myself out of a deep sleep to feed my 3 month old? I’m trying to block out those middle of the night feedings from my memory! I don’t WANT to remember that my sleep was interrupted 3 times last night! It was then that I knew the diet record would not be my friend.
When C’s 6 month birthday rolled around we still hadn’t started solids and to be honest, I was resisting it because I loved being his only source of nourishment. Then I got the 3 day diet record in the mail. Flipping through the pages, I knew that I did not want to have to include bites of cereal that he may have eaten, or may have dribbled down his chin into the chubby folds of his neck. Problem solved—no solids until after the 6 month TEDDY visit!
When it was time for the 9 and 12 month visits I knew I had to bite the bullet—C was well into solids by that point and I was going to have to suck it up and record it. Fortunately he was pretty good at keeping it in his mouth by that point and the store-bought jarred food was easy to record. Maybe this diet thing was going to be okay after all.
Then we got to the 18 month visit. The first day of the 3 day diet I had such good intentions. I put all his food into a measuring cup before giving it to him. I even copied recipes to bring to the visit. On day 2 I was feeling so ahead of the game that I gave him his painstakingly measured food, neatly wrote it all down, and then turned around to smile at C in his high chair, only to see him feeding all the food I had so carefully measured to the dog!
It’s nice that the diets are only collected every 6 months now that C is older but I can already see the 2 year diet record will be a challenge. Often throughout the day C will stop his playing to pry open the pantry door in search of Cheerios or animal crackers. Sometimes he asks politely for them but he really prefers just grabbing the box, shoving in his little hand and taking out a huge handful, some of which makes it to his mouth and some that the dog snatches as it falls to the floor. I never thought I would give so much thought to the amounts of food my child eats!
Coming up next—a two or three part series of posts about diet collection tips from a TEDDY staff member
Tuesday, June 28, 2011
Interview with a parent of a child diagnosed with celiac disease
At what age was your child diagnosed with celiac disease? About how long ago was that?
My daughter was diagnosed at a little over age 3. We officially made the diet change the day after Thanksgiving, about 3 months ago.
Describe how your child was diagnosed.
I received the dreaded call from a TEDDY Study phone number about 6 weeks after our TEDDY visit. I was convinced they were going to tell me that one of my kiddos (I have two in TEDDY) was showing antibodies to insulin because I am Type 1 Diabetic. When she said that Madelyn had celiac antibodies I was surprised. I didn't know much about celiac except that I had been tested before and I didn't have it. The TEDDY study likes to have two elevated levels in a row before sending you to a gastroenterologist. I don't like to wait around – especially when it comes to health related items – so I immediately called my PCP to see what we needed to do. I was driving when I got the call, so as soon as I got home I started researching online what the numbers meant. I wanted to see how likely her levels meant she had it. The problem was that TEDDY uses state of the art laboratories that most hospitals don't have access to...so the internet didn't have anything about what her levels actually meant. When I saw my PCP he said, if her levels are elevated she has it – the blood tests are over 95% accurate. I asked if we should see a GI doc and he put a call into them. We went to see the GI doctor and he did an endoscopic biopsy. The doctor could see some damage right away and said he was very confident she did have it. When the pathology came back two weeks later we had our answer...she has celiac disease.
Did your child have symptoms of celiac before the diagnosis?
Yes and no...We didn't know and weren't looking for the symptoms so we didn't notice anything before the call from TEDDY. After learning some of the symptoms we found she had several. She is tiny and after each meal she had bloating – she looked like the children on TV that are in poor countries and starving. We just thought that because she was so small the food had nowhere to go but out. She pooped three to four times a day and they were loose and floaty. I heard stories of how hard it was to potty train for pooping and I was so glad it was easy for us...she went all the time. We never dealt with constipation – I thought we were lucky. She was always tired. She took long naps and slept at least 12 hours every night – even then she acted tired. She didn't like sandwiches. It sounds weird but I could never get her to eat them. I am told she may have known that she didn't feel good after eating them so she refused them.
Has anyone in your family been diagnosed with celiac before or after your child?
So, our GI doctor said that celiac runs so strongly in families that you should test any first degree relatives. Both my husband and myself were tested. The doctor was convinced I had it because it is also linked to diabetes....but it was actually my husband who has it. We don't know how long he has had it but he had very extensive intestinal damage by the time we caught it. They also found a liver and thyroid problem that they feel is connected to untreated celiac disease. He then had his Mom tested because she has several autoimmune diseases and she also has it. Our son is younger, 18 months, and the testing isn't reliable until around 2 but we think he may have it as well.
What has been the most challenging part of your child’s celiac disease?
I think the mental piece – I LOVE bread and gluten filled items and I grieve that for her. But she doesn't mind the diet one bit. She never complains about not being able to have something – even when we skip out on the Costco samples. It is also scary because I feel like you can never control it enough. They say even one crumb can cause an immune response. How do you ensure that one speck of gluten didn't accidentally make its way into her food. At this point, we control what we can and do the best we can. In three months we have only eaten out twice – restaurants are still scary places, but I think in time we will find acceptable places.
As far as the practical side of things, lunches and snacks are the hardest day to day items. We always have the car full of snacks just in case we are out longer than we expect. We can no longer just swing by the closest restaurants and grab a quick bite – so we always need to have something to tide her over until we get home. Lunches are a quandary everyday because we can't do quesadillas – her old favorite – or sandwiches. We are left with hotdogs without a bun or nachos. I hope to build up some more ideas here soon.
What do you know now, that you wish you knew when your child was diagnosed with celiac disease?
That kids adjust so much better than we give them credit for. Madelyn polices things herself already at 3 ½. She asks if things are gluten free. She doesn't eat anything she doesn't know is safe unless she has asked an adult. She hasn't mourned the loss of gluten for even a second. She accepts this as her reality and is ready to take on the world.
Going gluten free is a whole new way of thinking and eating. But once you make the change- I would say about 6 weeks in – it isn't that hard. You do a little more baking, a lot of cooking at home, and you grocery shop in a whole new way – but these aren't bad things, just different.
Did you change your whole family to gluten free food?
Yes and no. I make one dinner every night and it is of course gluten free. I struggle with the idea of allowing crumby gluten filled items in the kitchen – regular bread, bagels, treats – just out of fear of contaminating my kitchen. So, I bake gluten free bread and treats and we all just eat those. There are some snack foods that are gluten filled in our house for our 18 month old – goldfish, graham crackers.
Has your child been in preschool or daycare and if yes how do you keep them gluten free? Also what do you do for special events like birthday parties?
We are enrolling her in preschool next year. This was and is a stressor – again the idea of how do you know the snack table was cleaned before snack time. But, I researched a ton of preschools and found one that I feel like can keep up on her dietary needs. I will provide all of her snacks. Now, she also goes to a mom's group where she is in daycare for 3 hours a week and they give the whole class Fritos for snack – which are gluten free. Honestly, we haven't had any birthday parties to attend yet. With family gatherings I usually bring bread or something to add to the meal. I also have in-depth conversations with the cook to make sure they understand what to look for and so I know what's on the menu.
What resources have you found to keep your child gluten free?
I found the University of Chicago Celiac Disease Center soon after we got the TEDDY call. They have an amazing website, as well as hotline. They wrote a children's book called The Trouble Jack Had that does a great job of explaining to kids what celiac is. They also sent her a great gift basket with samples when she was officially diagnosed. Their website is: www.celiacdisease.net/
I was lucky enough to distantly know someone whose daughter also had been diagnosed with celiac disease two years before me. It was great to have someone get me pointed in the right direction. I would highly recommend seeking out other parents of celiac kids to get started.
The Gluten Free Living magazine is full of great information about celiac disease, but it's a little expensive and only published quarterly.
We also order a lot of our snack and baking items from Amazon.com. I didn't even know they sold food until she was diagnosed! They often have the best prices and I enjoy being able to order in bulk.
Pamela's Products and her website http://www.pamelasproducts.com/ are a great place to start when you need baking mixes and recipes.
There is only one book about kid's and celiac disease and I found it to be worth the read. Kids with Celiac Disease by Danna Korn
Would you share a recipe for a gluten free treat your child enjoys?
This is an awesome Chocolate Chip Cookie Recipe from Pamela's website:
Toll House® Style Chocolate Chip Cookies
1/4 cup butter
1/4 cup white sugar
1/4 cup brown sugar
1 egg
1 teaspoon vanilla
1-1/2 cups Pamela's Baking & Pancake Mix
1 cup semi sweet chocolate chips
1/2 cup chopped walnuts
Cream butter and sugar, add egg and vanilla and beat. Add Pamela's Baking & Pancake Mix, incorporate slowly and then add chocolate chips (and nuts). Place scoops of dough on a lightly greased cookie sheet. Flatten. Bake at 325° for approximately 12-15 minutes. Let cookies cool slightly and use a spatula to remove from cookie sheet.
My daughter was diagnosed at a little over age 3. We officially made the diet change the day after Thanksgiving, about 3 months ago.
Describe how your child was diagnosed.
I received the dreaded call from a TEDDY Study phone number about 6 weeks after our TEDDY visit. I was convinced they were going to tell me that one of my kiddos (I have two in TEDDY) was showing antibodies to insulin because I am Type 1 Diabetic. When she said that Madelyn had celiac antibodies I was surprised. I didn't know much about celiac except that I had been tested before and I didn't have it. The TEDDY study likes to have two elevated levels in a row before sending you to a gastroenterologist. I don't like to wait around – especially when it comes to health related items – so I immediately called my PCP to see what we needed to do. I was driving when I got the call, so as soon as I got home I started researching online what the numbers meant. I wanted to see how likely her levels meant she had it. The problem was that TEDDY uses state of the art laboratories that most hospitals don't have access to...so the internet didn't have anything about what her levels actually meant. When I saw my PCP he said, if her levels are elevated she has it – the blood tests are over 95% accurate. I asked if we should see a GI doc and he put a call into them. We went to see the GI doctor and he did an endoscopic biopsy. The doctor could see some damage right away and said he was very confident she did have it. When the pathology came back two weeks later we had our answer...she has celiac disease.
Did your child have symptoms of celiac before the diagnosis?
Yes and no...We didn't know and weren't looking for the symptoms so we didn't notice anything before the call from TEDDY. After learning some of the symptoms we found she had several. She is tiny and after each meal she had bloating – she looked like the children on TV that are in poor countries and starving. We just thought that because she was so small the food had nowhere to go but out. She pooped three to four times a day and they were loose and floaty. I heard stories of how hard it was to potty train for pooping and I was so glad it was easy for us...she went all the time. We never dealt with constipation – I thought we were lucky. She was always tired. She took long naps and slept at least 12 hours every night – even then she acted tired. She didn't like sandwiches. It sounds weird but I could never get her to eat them. I am told she may have known that she didn't feel good after eating them so she refused them.
Has anyone in your family been diagnosed with celiac before or after your child?
So, our GI doctor said that celiac runs so strongly in families that you should test any first degree relatives. Both my husband and myself were tested. The doctor was convinced I had it because it is also linked to diabetes....but it was actually my husband who has it. We don't know how long he has had it but he had very extensive intestinal damage by the time we caught it. They also found a liver and thyroid problem that they feel is connected to untreated celiac disease. He then had his Mom tested because she has several autoimmune diseases and she also has it. Our son is younger, 18 months, and the testing isn't reliable until around 2 but we think he may have it as well.
What has been the most challenging part of your child’s celiac disease?
I think the mental piece – I LOVE bread and gluten filled items and I grieve that for her. But she doesn't mind the diet one bit. She never complains about not being able to have something – even when we skip out on the Costco samples. It is also scary because I feel like you can never control it enough. They say even one crumb can cause an immune response. How do you ensure that one speck of gluten didn't accidentally make its way into her food. At this point, we control what we can and do the best we can. In three months we have only eaten out twice – restaurants are still scary places, but I think in time we will find acceptable places.
As far as the practical side of things, lunches and snacks are the hardest day to day items. We always have the car full of snacks just in case we are out longer than we expect. We can no longer just swing by the closest restaurants and grab a quick bite – so we always need to have something to tide her over until we get home. Lunches are a quandary everyday because we can't do quesadillas – her old favorite – or sandwiches. We are left with hotdogs without a bun or nachos. I hope to build up some more ideas here soon.
What do you know now, that you wish you knew when your child was diagnosed with celiac disease?
That kids adjust so much better than we give them credit for. Madelyn polices things herself already at 3 ½. She asks if things are gluten free. She doesn't eat anything she doesn't know is safe unless she has asked an adult. She hasn't mourned the loss of gluten for even a second. She accepts this as her reality and is ready to take on the world.
Going gluten free is a whole new way of thinking and eating. But once you make the change- I would say about 6 weeks in – it isn't that hard. You do a little more baking, a lot of cooking at home, and you grocery shop in a whole new way – but these aren't bad things, just different.
Did you change your whole family to gluten free food?
Yes and no. I make one dinner every night and it is of course gluten free. I struggle with the idea of allowing crumby gluten filled items in the kitchen – regular bread, bagels, treats – just out of fear of contaminating my kitchen. So, I bake gluten free bread and treats and we all just eat those. There are some snack foods that are gluten filled in our house for our 18 month old – goldfish, graham crackers.
Has your child been in preschool or daycare and if yes how do you keep them gluten free? Also what do you do for special events like birthday parties?
We are enrolling her in preschool next year. This was and is a stressor – again the idea of how do you know the snack table was cleaned before snack time. But, I researched a ton of preschools and found one that I feel like can keep up on her dietary needs. I will provide all of her snacks. Now, she also goes to a mom's group where she is in daycare for 3 hours a week and they give the whole class Fritos for snack – which are gluten free. Honestly, we haven't had any birthday parties to attend yet. With family gatherings I usually bring bread or something to add to the meal. I also have in-depth conversations with the cook to make sure they understand what to look for and so I know what's on the menu.
What resources have you found to keep your child gluten free?
I found the University of Chicago Celiac Disease Center soon after we got the TEDDY call. They have an amazing website, as well as hotline. They wrote a children's book called The Trouble Jack Had that does a great job of explaining to kids what celiac is. They also sent her a great gift basket with samples when she was officially diagnosed. Their website is: www.celiacdisease.net/
I was lucky enough to distantly know someone whose daughter also had been diagnosed with celiac disease two years before me. It was great to have someone get me pointed in the right direction. I would highly recommend seeking out other parents of celiac kids to get started.
The Gluten Free Living magazine is full of great information about celiac disease, but it's a little expensive and only published quarterly.
We also order a lot of our snack and baking items from Amazon.com. I didn't even know they sold food until she was diagnosed! They often have the best prices and I enjoy being able to order in bulk.
Pamela's Products and her website http://www.pamelasproducts.com/ are a great place to start when you need baking mixes and recipes.
There is only one book about kid's and celiac disease and I found it to be worth the read. Kids with Celiac Disease by Danna Korn
Would you share a recipe for a gluten free treat your child enjoys?
This is an awesome Chocolate Chip Cookie Recipe from Pamela's website:
Toll House® Style Chocolate Chip Cookies
1/4 cup butter
1/4 cup white sugar
1/4 cup brown sugar
1 egg
1 teaspoon vanilla
1-1/2 cups Pamela's Baking & Pancake Mix
1 cup semi sweet chocolate chips
1/2 cup chopped walnuts
Cream butter and sugar, add egg and vanilla and beat. Add Pamela's Baking & Pancake Mix, incorporate slowly and then add chocolate chips (and nuts). Place scoops of dough on a lightly greased cookie sheet. Flatten. Bake at 325° for approximately 12-15 minutes. Let cookies cool slightly and use a spatula to remove from cookie sheet.
Wednesday, June 15, 2011
Another good TEDDY visit!
Another great visit! At least I didn’t jinx us like I thought I might here. My son did great with his blood draw again, so well that my husband didn’t understand why another child was upset. He’s only been able to make it for a couple of visits and missed the visits where during the height and weight you’d have thought we were torturing him. Both visits he attended our son was an angel for the entire visit and was fascinated watching/popping bubbles and looking at the blood come out of his arm. I’ve explained to my husband that not every child’s blood draw is this easy and we’re very lucky the visits have gone so well for our son.
I know at some point in the future the blood draw may scare him. It’s been great having blood draws go well so that I know it doesn’t hurt. We think the numbing cream is amazing. He’s almost at the age where I expect him to remember the drill and get excited about picking a prize and our fun trip to the zoo or museum after his visit. I only hope the visits continue going so well for our son as it makes our participation in TEDDY so easy.
Now the hard part, waiting for the antibody results…
I know at some point in the future the blood draw may scare him. It’s been great having blood draws go well so that I know it doesn’t hurt. We think the numbing cream is amazing. He’s almost at the age where I expect him to remember the drill and get excited about picking a prize and our fun trip to the zoo or museum after his visit. I only hope the visits continue going so well for our son as it makes our participation in TEDDY so easy.
Now the hard part, waiting for the antibody results…
Thursday, June 2, 2011
Please help! Does your child have celiac disease?
I hope to have more guest blogs from parents in the TEDDY study soon. TEDDY tests once a year for an antibody that can mean a child has celiac disease starting at age two. We’ve had a specific request for real experiences from parents whose children have been diagnosed with celiac disease. A parent of a newly diagnosed child with celiac is struggling and asked TEDDY for help. This parent and other parents of newly diagnosed celiac kids would greatly benefit from your experiences with starting a gluten free diet, what resources you use, how you stay gluten free, daycare/school, eating at restaurants, etc.
If you’re interested please contact me at teddymomblog@gmail.com, email your TEDDY site’s email or call your main TEDDY number. You can write/type out your experiences to a list of questions or we can do it in an interview format over the phone. We will use first names or first initials on the blog to protect your privacy.
If you’re interested please contact me at teddymomblog@gmail.com, email your TEDDY site’s email or call your main TEDDY number. You can write/type out your experiences to a list of questions or we can do it in an interview format over the phone. We will use first names or first initials on the blog to protect your privacy.
Monday, April 25, 2011
Potty trained = much easier for parents, more difficult for TEDDY stool collection
Initially I thought I’d be writing this blog a year from now. My son potty trained very early, he was completely potty trained the month before he turned 2 years old. My husband and I realize how lucky we are, the whole process was so easy with my son taking the lead and only a little encouragement from us. If you have a potty trained child you know how fast you want them to stop going in the little potty chair and do their business in the toilet. Well my son even jumped that hurdle in a matter of days. He now prefers the toilet so where does that leave us with collecting TEDDY stool samples?I think this could be our TEDDY Achilles’ Heel. Blood draws have been easy so far, there has to be something challenging with our participation and getting my son to poop in the collection device may be difficult. My son is willing to try almost anything new for fear of missing out on something fun but is very particular and wants to be alone with the door shut during that time. I don’t think having the hat under the toilet seat is going to work for us at this time. He is still using a potty seat on top of the toilet seat and the hat won’t fit under it or under the toilet seat as the directions describe. I have some unconventional ideas for how to collect the sample including just floating the bucket below in the toilet bowl and hoping to catch something.
Hopefully we will find a rhythm with potty trained stool samples and be able to continue collecting monthly samples. Fortunately, he’s still letting me know when he needs to go and wants help after going. I hope to blog again in a few months once we have worked out the kinks and maybe learn a few tricks that could help others. Wish us luck!
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