SilverSlipper

Unfortunately, I think you'll have to get rid of the wooden and plastic items. I can sympathize. We had to replace all of ours.

When my oldest was diagnosed with autism, we were subjected to many hurtful comments. There was much criticism aimed at our pediatrician, which upset me because he has always been our kids best advocate. One relative asked was it caused due to my drug use (which I don't do) or because we made homemade baby food rather than store bought (thinking the store bought had more vitamins). Even questions of whether our daughter's autism was 'contagious'. We brought all family members together and hired a consultant to come in and answer questions. We promised not to be mad and after a while all manner of offensive questions were being asked. We smiled (through gritted teeth but smiled) and our consultant answered them all. Only then, did they 'get it'.

With our second daughter's celiac disease, not everyone got it. (If anyone read Dear Abby in the past few months, I wrote in saying that holiday meals should accomodate celiac disease). Every holiday, people would not read ingredients or think 'just a bit' wouldn't hurt. Every holiday ended with my daughter not able to eat things and still being sick. So we sent the following email to all family members:

"Good Morning and I hope all of you are having a great Thanksgiving week-end! We enjoyed seeing everyone. It was great to see Davids family in *city removed* as well, however, somewhere along the way *daughter* stumbled into some hidden gluten in her food and shes been ill ever since. Shes able to get out of bed today (though the diarrhea is continuing), but the stomach pains and diarrhea made for a not so happy holiday.

With all the stress over keeping her healthy, weve decided to avoid future family events where food is served at other peoples houses. *daughter* is expected to be grown up regarding her diet and health. Wed like her to have the freedom to be a little girl during the holidays without worrying about becoming sick. Wed love to get together to visit, just no food please. So, wed like to invite people to our house to celebrate Christmas!

The party will be from 12 4 on December 19th (Sunday). Its a drop in when you want type of gathering. We will be inviting all family members to come during this time. If you would like to exchange gifts at this time, that is fine (but keep in mind that other people will be around) or we can plan to do it another day. Please dont bring any food, we will be doing all the cooking and it will all be gluten free. We have decided to sponsor a family for Christmas and they have a child like *daughter* who is also diagnosed with Celiac Disease. We'd appreciate our guests bringing an item to donate to this family, especially items clearly marked 'gluten free'. We feel so blessed, we want to share our happiness with others and try to make their challenges easier.

We hope to see you here - much love to you all!!"

Yes, some were offended and decided not to attend (which was fine, I can wait them out). Some were impressed that we made such a stand and showed up with lots of items for the little boy we sponsored for Christmas. Any conversations about this were kept out of my daughter's hearing. She has no idea that there was ever conflict about her food. I wouldn't hesitate a second to prevent her visiting a relative that didn't keep her health in mind. Accidents will happen and I understand that, but disregard for her health means that a relative will be hearing from me. On a funny note, my in-laws called me and told me that if I'm ever upset with them, to please call them - they don't want to read about it in a syndicated column.

Good luck with everything (both you and Original Poster!)

I agree. Time for a family meeting. With two little ones, I can understand that it may be hard to work around what little kids expect these days (goldfish, oreos, etc). And, until you do a special diet, it can be very overwhelming and I'm guessing that is why your wife hasn't moved the house gluten free.

You need duplicate items like cutting boards and toasters, etc. Plus, your wife needs to get on board with the idea that gluten free comes first. In our household (mixed gluten), the theory is EVERYTHING is gluten free and the gluten items are kept separate (rather than a gluten kitchen with gluten free stuff bagged up, etc). All of our pots and pans, etc are gluten free utensils except for the few items that are gluten items.

Even little kids can learn to use paper towels and wipes. If you're nervous about them handling clorox wipes, even baby wipes would be better than nothing. The easiest chores in the world are wiping down kitchen tables and refrigerators, etc with baby wipes. Plus, they should use them to clean up after themselves.

Good luck!

Have you looked into reflux? All of my kids have had reflux issues before, particularly my oldest. Her reflux was so bad that at one point she was throwing up six or more times a night. There are over the counter reflux medications that can be crushed up and given to children (and there are some liquids that are prescription). I started sleeping in her room and finally realized it was reflux after hearing gurgling in her throat (while she was asleep) right before she threw up.

Because of her age, you may want to ask your pediatrician (and you might be able to call the office and ask the nurse rather than making an appointment) for dosage.

Good luck, I hope you figure things out.

I am so sorry for your loss. I am glad that others have gathered around you and your family during this time. You will be in my prayers.

My youngest daughter (6 yrs old) has always tested negative for celiac disease. She has numerous digestive problems, mostly chronic stomach aches and diarrhea. Stomach aches are almost daily, diarrhea is a few times a week. At home, we're mostly gluten free, so she doesn't get it often. During school time, she had gluten daily at school. We tried a gluten-free diet, and it seemed to help some - she didn't complain about stomach aches all the time and the diarrhea greatly decreased, but after a few weeks on a gluten-free diet, my oldest daughter started having seizures and I dropped the vigilance in keeping track of my youngest. (My middle daughter has celiac disease).

We have a well child visit next week. Our pediatrician has absolutely no idea what could be the problem. I did take her to an allergist - my co-pay was $370 and they said she had no allergies, no asthma, nothing they could pinpoint. They tested her for many auto-immune disorders which were all negative. (She's a carrier for cystic fibrosis but does not have it). I haven't taken her to a gastro yet.

I'd like to do the genetic test for Celiac but I am not sure how to ask for it. Does it have a name? Do I need to go through a gastro for it?

Other than the chronic stomach problems, she gets dizzy a lot and has muscle tremors in her arms and legs. She seems to cough and choke a lot when eating. I'd love any ideas on where to go. I cringe at telling our pediatrician (again) that there are still problems and this has been ongoing since last Nov/Dec.

And yes, I do doubt myself. It has been suggested by relatives that because our other two have medical conditions, that I am 'creating' a problem with our youngest.

My 9 yr old has celiac disease. She does very well (for the most part) speaking with adults about her celiac disease. In our school system, there are only two children with celiac disease and the other one goes to a school across town (very small area by the way). She has two different approaches (that I've discussed with her). If she's talking with someone she will see often (teacher, youth group, coach, etc) she tells them that Celiac Disease is an autoimmune disorder and she cannot eat gluten and she's uncomfortable touching it (she sometimes breaks out after handling wet gluten). If she's talking with someone she won't see that often (substitute teacher, a friend's parent, etc) she tells them that she is allergic to gluten and can't eat wheat and some other items. (She knows the difference between allergy and auto-immune but some of the people she talks to simply glaze over and get confused).

The problem comes about when well-meaning people (and some claiming a diagnosis of celiac disease) try to push foods on her. They'll hand her half a cookie with a wink and tell her that they won't tell me or my husband. Or, they'll tell her that small amounts won't hurt her; that they have allergies too but they can still eat (dairy, eggs, wheat, whatever) on special occasions. One lady even told her that her kids had celiac disease but she always let them eat pizza on Friday nights. On those occasions, she's very polite about telling them that even small amounts of wheat make her stomach hurt really bad and makes her throw up and refuses it. (It's rare that she throws up, but people seem to become alarmed at the thought of a child throwing up. They don't get overly bothered by stomach aches.) There seems to be a feeling that she WANTS gluten but can't have it so they try to help her cheat. (If that makes sense?). We can usually work through those situations without too much trouble.

However, sometimes people try to 'help' by fixing her a plate because of her celiac disease or pick her up something on their plate. They'll stack boiled shrimp on top of a piece of bread (for example) and then deposit the shrimp on her plate. She won't touch them if she sees it has been next to (or on top of!) gluten items. But when she tells them that her food can't even touch gluten, we do get some eye-rolling. Is there any polite way for her to say this that sounds non-dramatic? I know the easiest thing is for her to simply fix her own plate, but sometimes they just bring her things or if she's getting up to get more potato chips (or whatever) they say they will bring it back for her. She's a bit uncomfortable insisting over adults. If myself or my husband is around, we say it for her, but she's doing more activities where she may be on her own during meal times.

I also wanted to mention that if you have strong cramps after being glutened, your doctor can give you medicine that can help with that. It seems to shorten my daughter's overall reaction as well. All the best

Raindrop, I'm sorry you are feeling so low. My daughter (the one with celiac disease in our family) has moments of sadness with and without glutening. I think if you were surrounded by more supportive people, it would help with this, at least to some small degree.

We rarely eat at restaurants. There are a few that are knowledgeable about gluten and totally 'get it', but so many don't get it or even understand that it takes only trace amounts to cause serious problems. My in-laws have developed relationships at certain restaurants and ask for the same server, etc to make this a bit smoother.

If you are going to a new restaurant, definitely call ahead and ask for the manager (try to call during non-busy times or ask if there's a better time to call - you don't want someone feeling rushed and forgetting something). Try to get a copy of the menu ahead of time so you can ask pertinent questions. If all else fails, ask if you can bring your own food due to a medical condition. If it doesn't look like you can eat anything, don't go. We refuse all invitations to sandwich and pizza restaurants, even though they usually offer a salad bar. The cross contamination risk gets her every single time.

If you don't mind my saying so, you may benefit from seeing a psychiatrist about being more assertive. I realize that may offend you, so please let me explain. For many years, I had trouble being assertive about things I wanted (not related to Celiac by the way) and I finally saw a psychiatrist and went through assertive-ness training (it probably had another name). I'm typically a quiet, people-pleaser and I never wanted to rock the boat. I learned that if it affects me adversely, I need to speak up. Sometimes, it's still difficult, but I speak up enough to make a difference in my life. It doesn't sound like the people around you take your medical condition seriously. I don't think that will change until you start letting them know that last minute changes about where to eat isn't okay with you. It's better for you not to go. (And also, always ask about fried foods if you are at a new restaurant - we have learned the hard way that not all restaurants treat fryers/oil the same way).

All the best and I hope I haven't offended you.

It depends on how you cook it. We eat cornbread quite a bit, but make it without wheat flour. I also thin it a bit and cook it like pancakes (basically corn cakes). Absolutely great for soup and veggie plates!

But yes, if anyone ELSE offers cornbread, run far, far away! And realize that cornmeal and cornmeal mix are very, very different.

domesticactivist, I read your blog (well a good bit of it anyway) and all I can say is, "Wow!" and I wish you all lived next door! Kudos on getting everyone in (and out) of your household on a specialized diet. I wish you all the best. And yes, I'll let you know if our gastro says anything else that might be good to test for. I'll check on a nutritional deficiency testing as well.

stanleymonkey, I am always so thankful that we have no ana reactions here. That must be so scary. I suppose part of the reason I am so annoyed at the facebook drama was that the person who started it all, went on to lecture me about what SHE feeds her children for weight gain and offered to share her recipes with me. I told her I would love to have them but she never sent them. It was like she wanted to start a drama, maximize her maternal superiority and appear generous by offering to help, but never helped.

Thanks everyone I guess I was mostly surprised (and a bit embarrassed) that such a big deal was made of it publicly. People frequently comment about how small she is and I like to let others know casually that we are aware of her size and her pediatrician is on top of things. My facebook comment was very much low key and I thought it was perfect. For others to challenge what I feed her and what our doctor's were saying made me a bit defensive. (I become a beast at times when I feel my parenting skills are questioned, particularly when I'm frustrated at not being able to 'fix' something).

Karen, I agree, they are way too serious over this, and she has another check up in Oct. Four months of ice cream won't hurt her. Yes, she eats nuts, loves boiled peanuts, raw almonds, walnuts and all seeds (pumpkin, sunflower). I'll try the olive oil as well and she loves avocado. And yes, her energy level is super-high. She's the only person on the soccer team who doesn't take a break during the game - she runs constantly. She just signed up for cheerleading (for when she's not playing soccer) and is at a karate camp this week (2 hour classes daily). She's the fastest runner on her soccer team according to her coach. She's incredibly active.

GFManna, we can do those things and yes, she adds fruit to her ice cream. (We live in the country so have unlimited access to numerous berries and fruits).

JestGar, thanks for the scientific approach. I found the article VERY helpful and it helped me understand the foods approach a little better. Thank you.

domesticactivist - no, she's had no other screenings. Our gastro suggested that perhaps he would do some if her weight didn't pick up in a few months, but he didn't say which ones. Our daughters sound very similar. Her ice cream intake is basically once a day and sometimes a milkshake at night. Actually, we are all doing that since it's hard to ignore when the ice cream is brought out. My husband would love it if we did away with sugar but for me, I'm not ready to take that step yet. I find cooking to still be challenging at times and I'd rather stay in my comfort zone. Thanks for the blog link, I'll be checking it out. I'd love to read more about it.

Ryebaby - when I was pregnant, I lost significant amounts of weight and ice cream was my friend then as well. I suppose that's why I didn't worry about it - I know ice cream seems to be a calorie boost from a doctor's point of view.

I have another daughter with a significant disability and sometimes I get absolutely sick of doctors, appointments and school systems. I keep a calendar with me at all times for scheduling and a small business card book to hold business cards from all our medical people. I used to keep a small notebook with me that contained notes from appointments and school meetings. Since I felt like I was going nuts, I assigned myself one day a week to relax and I scheduled zero meetings of any sort on that day. Sometimes it helped get me through to know that I had only a few days until my next 'break'.

For meals, I sat down and wrote out 'menu' cards. At first, it was grilled meat of some sort, rice or baked potato and steamed veggie. I made sure I had enough for three meals and then I started looking around. I eventually managed to make the transition to kid foods - pizza, spaghetti, mac and cheese. Then put together some casserole combinations. I used my menu cards until my mind was programmed to think gluten free for meals. (We all eat gluten free meals and dessert).

I make a 'master list' of things I know my daughter will need for school and shop for those when I shop for school supplies. And, we started teaching her very quickly how to look after herself. We're very lucky that she was already a fruit/veggie kid so the switch to Celiac was not traumatic. She has moments of sadness a couple of times a year, especially around Christmas, that she can't eat what other kids do, but we work hard to make great substitutes.

Because of the demands of the household (we have two other kids, one who needs full time care with daily living tasks like bathing, brushing hair, etc), we have a housekeeper come in once a week to clean. Next year, I'm hoping to hire one of the paraprofessionals at the school to come in and babysit for all of them so my hubby and I can take an evening out. As invested as you are in your kids, you need to save time for yourself or you will go nuts.

All the best

Thank you!!!! I am totally willing to meet them halfway and do more than is required of me. gluten-free dough is easy to come by and is actually alot neater than traditional playdough. gluten-free glue is easy to find, just have to get the right kind. The paint used in the school is already gluten free so yay!

Yes, definitely check to see what the problem areas are for supplies and then approach with a range of things you're prepared to do to correct it. If they see that you are looking into things for them (rather than demanding they check and fix), they will be more open. You approach it from, "I've checked into the school supplies and was thrilled to see that you already use a brand of glue and paint that is gluten free! Playdough is not gluten free and unfortunately, it easily transfers to other toys. I was hoping we could use a gluten free version of playdough when she starts kindergarten this fall. There is a recipe and I'm happy to make enough for the classroom. OR I've located a company that sells it and I'm happy to pay the difference in cost from what you would have spent on regular playdough."

I know some parents like bringing in cupcakes for some reason (eye roll). While I would love to see them not brought at all I do like the once a month suggestion. At least then I can be there to wipe tables, sweep the floor etc. Cupcakes are SO crumby I don't think the teacher will have time to properly clean. Of course the moms who just HAVE to send cupcakes will also be MUCH too busy to help on their child's cupcake day. That is fine, I will be there for my daughter.

I know. There will also be Moms who like to surprise the class with doughnuts occasionally as well. It's a bit insane and, in my opinion, out of control. It is my understanding that teachers dread class party days as well due to all the sugar. I think approaching the school into a policy wide change wouldn't be that difficult and would have staff support. At the same time, request that the school start implementing healthier food into class parties. (You probably can't avoid the cupcakes, but if you can start the ball rolling for carrot sticks and apple slices at parties as well, it is a start). There's lots of literature regarding children and obesity concerns. And if the classrooms have 'room moms' who help plan the parties, insist that you are involved in the planning to make sure your child can have similar items. Helping in the classroom at parties not only keeps your child safe, but I know it would be appreciated by the teacher.

I have no problem paying for gluten-free items but I really wonder why I should have to. My daughter is entitled to a public education just like anyone else. THis is where the emotions come in and I turn into a monster!!

Sometimes, it's not about what is legally right - it's about keeping the peace. My oldest daughter (with autism) is non-verbal and teaching her to read is very difficult. I located a reading program that would be great for her that costs $300. Considering they have come to a dead end on how to teach her, they technically (and legally) have no reading program for her. Legally, they should provide this program. They balked and said they wanted to look around and see what they had that might work. Rather than start an argument, I offered to pay for the program. I have no doubt they will take the program seriously because they realize that I was serious enough about it to pay for it myself.

You're right, you shouldn't have to pay for it yourself, but it's enough of a gray area that they may balk at paying for the entire classroom. They may surprise you and offer to pay for it, I'm not sure how well funded schools are where you live. Here, the teacher would have to pay for it out of pocket and a $3 glue stick would cause a year-long resentment. I guess what I'm saying is pick your battles. It's far more important to have a school that supports you and is on your side than to battle over the small stuff. You don't want to be the parent that teachers dread having your kid. You don't want the other kids to get mad at your child because they can't have cupcakes at school.

You also don't want your child seen as so fragile that they can't do 'normal' kid activities. I hold my breath everytime my daughter wants to join a new club or team or try a new activity. Without fail, I always get a phone call asking if my daughter has a medical condition (we're a small town). I answer honestly, but assure them that she is very much independent and able to look after herself and we will provide everything she needs. During soccer, that meant that I volunteered to bring team snacks every game. For Children's Theatre, instead of sharing make up, I buy our own set. I shouldn't HAVE to, but I do because I want her to have the opportunity to do many things instead of quietly discriminated against because other's don't understand Celiac Disease. It also has the added bonus of giving me the reputation as a parent who has high maintenance kids but I'm a parent they want involved in activities. (I should also add that I do have a limit and if people are being careless about my kids' health or education, I'm very involved in correcting the situation regardless as to what lengths I have to go to).

Anyway, I've written a book again - sorry! Good luck!

My daughter is low-weight for her age. She'll be 10 yrs old in August, is about 4'2 inches and 48 lbs. She typically drops on and off the growth chart. Our pediatrician has always been comfortable with the fact that she's growing, just not a lot, but she is growing - she's physically active (plays soccer) and does well in school (straight A's). Our previous gastro had concerns about her weight, but said to give it another year. Both suggested a high fat/high calorie diet.

This year, our insurance changed so we went to a new gastro. He has a special interest in Celiac Disease as he has family members (children) with it. (Really nice to talk to a gastro who is 'up' on the latest in gluten free food and where to find it). Because of his interest in Celiac Disease, he has a large practice of kids with celiac disease. He stated that my daughter was one of the smallest kids he has seen (with celiac disease as the only medical condition) even taking into account that she has celiac disease. He stated that at her age, she needs to weigh more, since her body will be going through changes in the next few years that can be complicated by low weight. He said that he was hoping that since school just let out that perhaps she was lower than normal and that summer would 'fatten her up' a bit. He wants to see her again in October and said that if she still hadn't gained a few pounds then he would want to run more tests and probably put her on special vitamins and drinks, etc. He was teasing her a bit and told her that she needed to drink milkshakes and eat ice cream every day. He told me he was only partly joking and to give her lots of high calorie, high fat foods (including ice cream and milkshakes) and to limit clear liquids. He said that her diet would be the exact opposite of the diet suggested to the majority of kids in the US.

I came home and posted a comment on facebook which basically said that my daughter had a new favorite doctor because of the ice cream, milkshake diet. It was a light-hearted comment to update relatives/friends about the doc appointment and I mentioned that she was underweight which was a concern. The majority of people took it in a light-hearted manner but I've had a few friends go a bit nuts that he would suggest ice cream and milkshakes. They are saying that this will put her at risk for potential cholesterol problems later in life and poor health. (As a side note, we try to not create bad eating habits when we do her diet - the ice cream would be the most dramatic, mostly we put higher fat/calorie items in the foods we cook rather than stuffing her with candy and cake).

I plan to follow what our gastro told us but I was curious about whether we are setting her up for cholesterol problems later in life as well as suggestions for higher fat/calorie foods/snacks. She's not picky about eating. Actually, if offered a choice between a cookie and raw asparagus, she'll take the raw veggie every time. Our pediatrician has commented before that she eats TOO healthily which is part of her weight issue. I'd love some thoughts about what the doctor is saying and suggestions. Thank you!

Edited to add - Nutritionists aren't covered by our insurance and are about $250 an hour (and have already mentioned that they may need more than one hour during a session). So, I can't consult one.

Thanks - the school is behind in 504 plan meetings so I'll mention it in the fall when we meet. My daughter does wash her hands but it's a bit vague as to whether other people do or not. Thankfully, she is meticulous about avoiding gluten and once she knows problem areas, she resolves them. So, I'll talk with her first.

My daughter's classroom washes their hands after going to the bathroom, but in all other circumstances (including before/after snack/lunch), sanitizer takes the place of soap and water. Am I correct in saying that sanitizer doesn't "kill" the gluten "germs"?

Interestingly, my daughter rarely throws up when glutened, it's typically massive diarrhea for about two weeks. However, when she has straight gluten (half a bagel for instance), she throws up, gets confused for about 24 hours but nothing lingers. (Horrible stomach cramps for a couple of days though). So, maybe your son will be okay. All the best to you both.

Hi DivaMomma,

My daughter attends school and will be going into 4th grade. She was diagnosed in First grade.

I think you will find that many parents will react negatively to the things you are asking for (parents of typical kids that is!). As much as you want to protect and cherish your child, they want to do things for their kids (like cupcakes shaped like dinosaurs for their birthday) and you will fall into the parent trap where the issue isn't the problem, it's all about emotions.

I wouldn't ban cupcakes (although I agree, the healthy snack would be better) because it's destined to fail. There will always be one parent who will flat out disobey and show up with cupcakes and dare the school to stop them. Then the other parents are mad and when their kids want to know why they didn't get cupcakes at school, the finger will point at your child. The better solution is to ask if birthdays could be celebrated one day each month (all the Sept birthdays, etc) and make sure your child has a gluten-free cupcake. We were totally blown away one year when one month, all the birthday kids asked their parents to make sure the cupcakes were gluten free.

If you want gluten-free playdough, paint, glue and noodles in the classroom, I think you should offer to pay for it. I take a fairly firm line about asking teachers to provide extra for their classroom as many of them pay for the items out of their own pocket. Same with cooking activities - offer to pay for a gluten free alternative for the entire classroom. If you ask other parents to pay for special items, someone will be resentful of it. (Just as a side note, I've always sent my daughter's classroom items and they were kept separate from the others - she's never had an issue and she's VERY sensitive to gluten with both immediate and delayed reactions).

Yes, the kids should wash their hands and tables should be wiped. Offer to send extra soap or wipes. I don't think you need new toys for the classroom - a good cleaning should suffice (and yes, broken record, offer to clean them).

Definitely keep her glue, scissors, whatever separate. My daughter even has her own box of tissues and sanitizer because I worry that other kids might eat their snack and touch the container without washing their hands. I make sure it's clearly labeled and that she has neat little bags and boxes to put her stuff inside that other kids recognize as being only hers.

I also think it's worth mentioning that we encouraged her teachers to discuss celiac disease with the entire class and that my daughter had it. I know that sometimes they cringed initially about discussing medical conditions, but her classmates noticed (and your daughter's will too) that she didn't eat the same things. I told the teachers to answer questions honestly and respectfully but never in a "poor thing" attitude. Once the kids are on your child's side, the parents are less of a problem - most kids will stay away from things because they don't want their friend to get sick.

As your daughter gets older, she needs to assume more responsibility for her own care as this is a life-long disease. Learning to look for "gluten free" on packages and eventually to read ingredients, brand names that are safe, not being too shy to tell an adult 'no thank you, I can't have items with wheat/gluten', and learning phone numbers for emergency contact or to call Mom and check on ingredients are important.

Speaking of emergencies, there needs to be a plan for what to do should she react to gluten and that requests to go to the potty are granted immediately. Depending on how severe the reaction she has, a few sets of spare clothing kept at school for emergencies would be great. My daughter is allowed to leave class without asking the teacher to go to the bathroom if needed and also allowed to go straight from the bathroom to the nurse's office if needed. There's nothing more humiliating than soiling your clothes and having to find a teacher.

My observation has been that parents who go to a school and demand that the school comply with their requests are typically met with eye-rolling and comments about 'snowflake' and 'princess' children. If you have that same list and offer to help with cleaning, pay for special items, volunteer for parties and in the classroom, they take you more seriously. My background is not only having a child with celiac disease, but also having a child who is severely autistic and being a state-trained advocate for parents of kids with disabilities. You mentioned in the post you linked that kids with disabilities are being included in general ed - that is true, however, if there is too much distraction or too much need, the child is not included and schools have taken parents to court and won.

All the best ~

My daughter was completely dry during nights and then started having tummy problems (which led to the Celiac diagnosis). She started wetting the bed during that time and I've always wondered if there was a Celiac connection. Our doctor prescribed desmopressin. Within a few weeks she was completely dry all night and hasn't had problems since. We started it after she turned 8 yrs old by the way. Best of luck.

I had a few bad incidents and finally lost my temper and wrote Dear Abby. lol

What we've done since then is turn our house into the 'party place'. I love to cook and I can make some great knock-off's of family favorites. Of course, there's always someone's "family recipe" that can never be duplicated, but I ask that no gluten food be brought into our house without clearing it by me. We have a few family members on very difficult diets that I try to accomodate but if they need gluten, they can have it.

The last meal we ate out, my daughter had a reaction while we were still there - just doubled over in pain, turned white and started crying (cross contamination). I probably should have offered to cook for that one too, but some lessons are learned hard I suppose.

We cook and invite everyone. If it's centered around a holiday, I ask they bring food items to donate to a gluten-free family in need or some other charitable act. Hey, they don't have to cook, clean or pay for the food - I figure it's the least they can do. Life is too short to bicker over food. My daughter has a medical condition and those needs come first. If they don't want to comply, they can look for an empty table at their house because everyone knows my house has the good stuff. If they choose to eat somewhere else, that's fine too. They do occasionally get mad with me for not coming to the "family holiday meal" they want to serve, but we simply don't. What fun is it to go to a family meal when my daughter can't eat things? I can't eat because I feel too guilty and my husband won't eat because of the principal of it. My youngest daughter also refuses to eat if she sees that her sister can't eat the food. (My oldest has autism and eats whatever she wants).

I'm sorry your family won't do right. You can't make them do right. Next family holiday, make a huge crock pot of chili, cook cornbread (gluten-free of course) and have a great gluten-free dessert and invite them all to your house. Tell them no gluten food allowed. Print invitations if you want (we've done that before so people don't think we're acting out of spite or something).

All the best...

This may not help, but our GI prescribed hyoscyamine for my daughter to take whenever she became ill from a gluten infraction. Typically, a reaction knocks her out for about 7 - 10 days. The first two are usually in bed with stomach cramps, so severe she can't walk or sit straight. She literally moans in her sleep. The diarrhea is usually the main problem and occasional vomiting. She's a very, very sick child during those times. The pain is the worst and what I sought help to relieve.

We've tried it twice now and it does seem to be a magic pill. The first time, she ate half a bagel. I had bought several bags of gluten-free ones and somehow picked up one that wasn't. My husband made breakfast, didn't notice it and she ate a wheat bagel. The reaction came about thirty minutes later and she was vomiting at school and unable to stand. She was doubled over in pain but within an hour of taking the pill, it stopped. She took it for two days and was able to move around without incident.

Because I'm a natural skeptic, I decided that it worked so well because she vomited everything up.

A couple of weeks ago, we went to a restaurant to celebrate my step-mom's birthday. The chips on the table had obviously been fried with something else because halfway through the meal, she became paler and paler and finally doubled over and started crying. Same thing, we got home, took the medicine and within a couple of hours she was back on her feet and able to participate in family events.

Technically, it's not supposed to prevent diarrhea, but she didn't have diarrhea either time.

She's not considered a super sensitive, but her sensitivity is quite high. If you're thinking of medication, it might be worth a try.

My daughter has had significant absences as well. We have a 504 plan in place to address this and as long as it's related to celiac disease or doctor excused, the school has no problem. When we realize that she will be home for a few days, the school sends home assignments (or at least what pages to read) and we work on it. It helps that I'm a SAHM. Also, the 504 allows us to keep a set of books at home for her - partially because absences happen unexpectedly and also because she's so small, she literally can't carry all of her books.

If your child is having heartburn issues, you may want to look into reflux problems. You can try some over the counter medicines for a couple of weeks and see if it helps.

Also, if you haven't done an allergy test, that may be helpful. It could be that she has allergies in addition to celiac disease.

Good luck!

Richard,

I understand your viewpoint. I agree that medically it's not supposed to happen. But, it does. Could it be something else? Absolutely. But we only see it with products containing gluten that are also wet. I have other kids with medical conditions so tracking this down to definitively say it's gluten is not high on my priority list (nor would I know what else to do to check). We avoid it and she can make her own decision about whether to continue when she's older. It's not been a huge issue - shampoo, conditioner, lotion. Her school doesn't do a lot of art stuff where I would worry about art supplies. On the very rare occasion it happens, she wears gloves or the teacher helps her.

I have heard others here say that they react from just touching gluten, but they seem to indicate that it's an internal reaction. My daughter reacts to ingested gluten (with the typical diarrhea, stomach cramps, etc) but no rash. She doesn't have DH. We thought originally that she had an allergy to wheat and consulted an allergist. But she has no allergies. This seems to be a skin reaction. I have no food allergies and love seafood, but if I touch it raw, I break out in a blistery rash. I realize that is a horrible comparison because raw shellfish is known to cause reactions like that, but it's the best comparison I can think of.

All the best...

Our middle daughter has celiac disease. Our family, for the most part, is gluten free for family meals. Our oldest and youngest still get gluten at school and occasionally at home. Our youngest has been having a lot of tummy problems this year. It's not uncommon to walk past the bathroom and see her sitting on the toilet because she's constipated, or because of diarrhea. Her stomach aches are several times a week and she's beginning to miss a fair amount of school because of it (she's in kindergarten so it's not a huge deal but she's fast approaching the limit for missed days). I send her regardless of stomach ache unless she also has diarrhea. When she sits down to eat, after a few bites she feels full and her stomach hurts. She's not losing weight like my other daughter and looks healthy (other than dark circles under her eyes no matter how much she sleeps). Because she isn't having trouble with weight/height gain, our pediatrician (who is great) isn't worried about her too much.

We did the bloodwork for celiac disease and it was negative. Our doctor suggested treating for reflux so we've been doing that for about a month with no improvement in symptoms.

I'm not sure if it's the power of suggestion or whether she really keeps track of things, but SHE is convinced she has celiac disease. She says that everytime she eats gluten her stomach hurts. She's knowledgeable about what items contain gluten and which ones do not because of our other daughter.

I've decided to remove gluten from her diet completely and see how it goes for the next two weeks. If she can make it 14 without stomach aches, constipation or diarrhea, it would be a miracle. Then I would like to re-introduce gluten to see her reaction.

My questions -

Is two weeks long enough to see a difference? We can go longer but I need to schedule her well child visit soon and wanted to discuss this further with her pediatrician.

Is it possible to get a diagnosis of gluten intolerance like this? I'm not sure what else to do since this is the second time her blood came back negative (she was tested about 3 years ago when our other daughter was diagnosed).

Is gluten intolerance a diagnosis that the schools will accept for 504 purposes?

Thanks!