SilverSlipper

If my daughter comes into contact with what I call "wet gluten" (shampoos mostly), she breaks out in a rash where the exposure happened. She's been tested for allergies and it's clean. No allergies. I understand that it's not medically possible, but if her shampoo has gluten in it, her scalp and back of her neck (part of her back also) breaks out in a blistery rash. We use gluten-free personal care products because of that. If she needs to handle gluten at all, she wears disposable gloves.

Thanks! We use Tide (which I think is gluten-free) and I use the liquid to make sure it dissolves.

Just let them know when you arrive. I believe that most dentist offices use gluten-free products, however, double check. I mentioned it to our dentist who had recently been to a conference where the topic was discussed. She said that all of their products are gluten-free. If you want, take your own toothpaste. My oldest daughter has autism and refuses their toothpaste and toothbrush, so we always bring our own.

We use cloth napkins at our house for every meal. I was wondering if this is a bad idea for our daughter with Celiac? We wash them (cold water), regular detergent, machine or line dry. But somehow, it seems like a bad idea for her to be wiping her mouth with something that we have wiped our (gluten) mouths with (and I'll confess that the other kids sometimes set bread, etc on them). I'm thinking of switching her napkins to a different color, but am I just being paranoid? She's very sensitive to gluten but not considered super sensitive.

Can you get a different gastro? The fact that he has quit growing is a huge flag for any doctor. One approach that I have found helpful when dealing with doctors is to tell them what I'd like for them to do. If I were in your shoes, I'd meet with a new gastro, hand over your copies of labwork, food diary and any other documentation and tell him that you have concerns about Celiac disease and you'd like for him to do a biopsy plus any other tests he feels are appropriate. One thing I did (for a different daughter who had stomach pain) was to video tape the spells of rolling around that she would do when her stomach hurt. It is a very emotionally distressing thing to watch. It was also very convincing that something had to be done. I'd also chart out your own growth chart. Basically you want to put the doctor in a position where he feels compelled to do something, immediately.

Another suggestion, have you tried removing dairy? Sometimes dairy can be really bad for people who are already having stomach problems. It seems to make them worse. It might help relieve some of the pain.

Thanks strawberrygm. When I first tried to send her lunches, I bought a laptop lunchbox ($$$'s) that she occasionally left at school, so I bought extra inserts (more $$$'s) and then tried to figure out lunch. Since we were dealing with some self-esteem issues (I guess that would be the word), I felt a lot of pressure to make her lunches look really 'cool'. Since I was also dealing with a new diagnosis, I didn't know how to cook well yet. The school decided that her teacher would be in charge of warming up her lunch and sometimes dishes were warped in the microwave or she forgot to put cheese on top (not blaming the teacher, I'm sure she was trying her best but this was kindergarten and there were lots of wiggling, giggling kids ready to go to lunch).

Eventually, the school started cooking her lunch after I found out that she would eat some of the lunch I sent, and then go through the line and ask which items she could eat and eat that as well (or instead). When we moved here, they already had worked with a child with celiac so they knew to buy the meat, veggies and fruit fresh. A typical meal would be a grilled chicken breast (with some gluten-free sauce on the side), rice, salad, steamed veggie and whatever fruit was cheap (frequently kiwi).

This year, they have had some rule changes about what they can serve and they are trying to make everything mesh together and have accidentally glutened her a couple of times. So, I'm debating. After next year, she moves to the middle school and I'm already hearing that the lunchroom is a nightmare - food tastes bad (one parent told me that she personally saw kids who had raw chicken nuggets and the lunchroom manager wouldn't re-cook or give them more), portions are small with no seconds (the other schools allow seconds depending on what they have extra) and the staff is rude. The other celiac kid is at that school now and his mother is about to start sending his lunches and has been vocal about the food being really bad. I don't mind fighting for things, but I'm not sure that this is worth the fight. I'll see how bad it is myself soon as my oldest is going to that school next year (she has autism with a lot of food sensitivities so the lunchroom is an important place for her as well).

My celiac daughter is in 3rd grade this year, but could definitely take care of heating up her lunch herself. I'm sure we're going to end up there at some point. Thanks again.

Hi davidsmom, I waffle back and forth on school lunches. Last year was great, this year they have stricter rules which seem to complicate things. There was another kid with celiac at the school before we got there, so most of the hard work was done. They have a corner of the kitchen they prepare her meals and they have a dedicated cutting board just for her. I've tried to send lunch for her and not only was it expensive, it was extremely difficult to make it edible by lunchtime. Still, there are many new products out there in the past couple of years and it may be time to try again. Thanks for the suggestions. We have been caught a few times where a manufacturer has changed ingredients. I've changed the way I shop and if I buy something pre-made (such as classico alfredo sauce), I buy several jars (between 6 - 10). That way, I know what is in the pantry is safe and I only need to read labels at the store.

Srall - I'm glad your daughter doesn't react too badly due to gluten exposure. My daughter is in so much pain she doubles over and (once after eating a bowl of cereal that she shouldn't) couldn't walk from the cramping. She moans in her sleep. It's heart-breaking. Her reactions come with uncontrollable diarrhea (she has a free pass to run to the bathroom, but at these times even that doesn't help). Luckily, the really bad ones are few and far between. Still, trace amounts will cause stomach pain, diarrhea and occasional vomiting. We've also seen a lot of drowsiness but I'm not sure if that's from the gluten itself or just not feeling well.

I've resigned myself that I may get a note about it and if so, I'll send in a reply detailing the fact that her medical condition makes things difficult and reinforcing that we stay on top of her schoolwork and she's otherwise healthy. I saw the vice principal today and he told me that he's going to look through her absences and if I wrote that it was due to a celiac reaction, he'd code them as doctor excused.I'm hoping that takes care of it, except I can't remember if I wrote it on there or not. I'm fairly sure that I did as I know the potential for her missing a lot of days. (The year she was diagnosed we were getting letters about her absences and then once she was diagnosed they stopped). I also told her that she's going to have to go and if she's still feeling bad after being at school for an hour, she can call me. (She didn't go today because she still had diarrhea last night and the school has a 24 hour diarrhea free rule - this was for a stomach bug, not Celiac). Next year, I'll remind them to code notes with Celiac as doctor excused at the start of the year so I'll have a more accurate count.

Although I've had some issues with the school and my oldest daughter (autism and non-verbal), things typically go smoother with this child and my youngest. I'm glad they're going to work with me on it. I hope they realize that I'm not keeping her out deliberately. After all, I still have to take my other two kids to school so it's not as if it benefits me in any way to keep her home.

Our whole family eats gluten free. One exception is my oldest daughter (autism) has significant eating issues so she will eat differently than us on most nights. None of us could get used to bread, so we removed it completely from the house for three months. Upon re-introducing it to our celiac kid and our youngest daughter (6), they loved it. I baked it (since the smell of bread is so yummy) and they ate it fresh from the oven with butter and honey. Then we toasted it for meals. So, things became better. We gave up on cereal (other than the occasional box of lucky charms) although I keep some cereal at my desk for a snack item. Our breakfast is typically pancakes, bacon, eggs, yogurt, fruit, grits (some combination) or chebe's cheese biscuits. I pre-cook things and we just microwave during the week. We've tried many different recipes to find ones that our whole family enjoys and that seems to be the trick. Everyone has a say in how things taste. Our littlest doesn't mind the gluten free food and if she happens to bring home something from school (a cookie or cracker from a party) she is very quick to warn our celiac girl that the item has gluten. Kind of cute actually.

We also do the nestle toll house cookie recipe with different flours. The cookies are yummy and I freeze half of the dough (already balled up) for quick snacks.

In place of bread, we frequently use lettuce wraps (romaine) for sandwiches. Probably not the yummiest for pb&j, but lunchmeat, cheese, veggies are very good.

I feel completely alone and just a smidgen like a bad parent. I have three kids - my middle daughter has celiac. Our school allows 10 absences per school year that are excused by a parent's note. One of those is used each year when we go to the beach (yes, I know, bad me, but hey, the in-laws pay for the whole week-end, even the food!) - that's our only 'skip' day. My daughter seems to have a lot of stomach aches which include diarrhea and sometimes vomiting. A few times I can find the culprit as being a gluten factor (one time the school changed taco seasoning which glutened her and a couple of times an ingredient I used had it in there). Other times, it's a stomach ache and who knows? She's in 3rd grade and very sensitive to being different (she's small for her age) and we both cringe at the thought of her having an accident in class or throwing up. I typically keep her home. Her 504 plan allows us to keep a set of textbooks at the house in case of a major gluten reaction (she'll miss around 7 school days when that happens - 10 days of illness total), so we study and she stays in bed (no video games, computer, etc). Her 504 addresses absences related to celiac disease, but I'm not sure if the one or two day absences are excused or only the long stretches.

She has a stomach bug at the moment (it's running rampant through the schools) and missed today and will miss tomorrow. That puts us at 12 absences for the year.

I want to add that she's a straight A student, was awarded the citizenship award last reporting period, is in the top 5 students for her grade in AR points and in the gifted program (one of three kids in her grade to be placed there). She's also active in Children's Theatre, her church and Soccer. So, her stomach aches aren't from problems at school.

I think she may have another food sensitivity developing, but haven't figured it out yet.

Are there other parents out there whose kids miss school a lot? I've sent an email to our vice principal to ask him how I need to handle these two days out. But, I'd love some thoughts in the meantime. I did make her go last week when she didn't feel good. She kept her head on the desk the entire day and then came home and threw up. We never figured that one out either.

Yeah, I posted about it somewhere on here - perhaps under the Parents of Children forum? My Dad had called me right after the column on vegans came out to tell me that he would no longer accomodate my daughter's Celiac. I was upset and Dear Abby was one of the 'victims' of my temper. My main point was that one can be a gracious host and accomodate just about anything. Over the years, I have made changes in my menu for those with peanut allergies, vegetarians, no pork, low fat, etc. I have always done that because I want people to feel welcome in my home and know that I am concerned for their health and/or respectful of their lifestyle and/or religion. It doesn't take a lot to plan a main dish that works for everyone and a side item or two for those with special diets.

And that's all I ever asked for my daughter. Some relatives would do just that, main dish and a side item or two (we would fill in the rest). Some made sure that there were either duplicate dishes (gluten and gluten-free) or the entire meal was gluten free. But this year, my Dad decided he was tired of 'cooking funny' and over the expense. (And when we arrived on T-giving Day, they told my daughter 'There's your seven dollar box of crackers we bought for you'.)

We tried to work around it and somewhere along the way she became glutened anyway.

So, we sent an email out to our entire family, declining all holiday meal invitations (though we would love to visit without food) and inviting them to our house for a Christmas party. We asked people to bring items to take to a family here in town who has a son with Celiac Disease (we sponsored through our school system). Some people brought nothing (like my Dad) and some (like my aunt) spent $50 or so on gluten free items (specialty mixes, crackers, etc or fresh fruit and veggies). (On a side note, we filled two large plastic buckets with food items - it was great!).

I had many relatives call me yesterday when the column came out, but not my Dad (although I'm sure he knows about it by now). I don't think they realized how hurt I was by what had happened.

Anyway, we are preparing for Christmas and will have a house full of people stopping by tomorrow for chili and Christmas goodies. Really, it works out better this way for us. I know the food is safe. Plus, my oldest has autism and it's stressful at other's houses. She's able to stay in her 'comfort zone' here.

Merry Christmas!

Thanks so much everyone!

Gotcha, I completely mis-read your post. I thought you were saying that if she were diagnosed with celiac disease you would still have her eating gluten. Sorry!

Hello CeliacKidMom - It took around three months for my daughter to start looking healthier and begin to gain weight. Probably six months into the diet was when we started seeing significant gains (significant for her age that is - about six lbs). She's still a very small child for her age, barely on the 'chart' that pediatricians love to show you.

I do have some suggestions -

First, ask your ped or gastro what they think about his weight and overall health. My daughter is very small and I get a lot of concerned comments about her, but her ped and gastro both maintain that she is healthy, just small. Try not to borrow worry (and that's hard, I know because I do it a lot). If they aren't worried, things should be okay.

Second, consult a nutritionist and ask for suggestions on weight gain. Check with your insurance company first. Mine, sadly, won't cover it and nutritionists make more money than anyone else we see on a per hour basis. If i could go, I would go to one.

Third, there are some weight gain protein shakes (scandishake comes to mind) that taste good and pack on some calories, gluten free.

Fourth - if you want to try dairy, you should see results quickly so I would try it for a week and see what you think.

Good luck with everything.

Lunabell, I'm so sorry, but I think I'm going to come across as critical and I don't mean it that way. I can tell that you already have a lot on your plate with your oldest child. I, too, have an oldest child with significant problems and I can also sympathize with the thought of squeezing in all you can before the end of the year.

I wanted to clarify something. If your youngest child tests positive for celiac disease, you need to go gluten free, not gluten-lite. There is long term damage from gluten, even if there are no outward visible symptoms.

I agree with getting a 504. It's been great for us and helpful especially for absences due to accidental glutenings (sp?).

All the best and I hope you don't take offense to my concern.

emaegf - No, he hasn't recently been tested for Celiac. He said that he was tested for it at the time of his diagnosis of Crohn's. When my daughter's bloodwork came back originally, we thought she would have Crohn's rather than Celiac simply because of family history. (Her original bloodwork tested positive for Crohn's, Celiac and IBS but the biopsy came back as celiac disease). I told him he should re-test, just to see, but he doesn't want to, nor will he test his kids. Go figure.

T.H. - In our area, there is no more knowledgeable doctor as there is only one who accepts our insurance. He's not our regular, but I do use him for strep tests, ear infections, etc. and then let our regular doc know. Our pediatrician has been with us since my oldest was born and I can't change. My oldest has severe autism and is non-verbal. Our pediatrician has learned all the 'tricks' to visits (looking in her ears and throat for example - not usually an easy task for a child who doesn't understand). I called their office and spoke to the nurse (who checked with him) and asked if there was anything else I should try before bringing her in and he suggested reflux. So, it wasn't like an office visit where he ignored the Celiac history. Unfortunately, I no longer have a ped gastro because our insurance doesn't cover the one we usually see, so I need to find someone. Thanks for the suggestions.

I probably won't be of much help I'm afraid. My daughter's original blood work came back as positive for Crohn's, celiac disease and IBS. When the biopsy came back with celiac disease (not Crohn's), I asked about IBS. I was told that IBS pretty much goes hand in hand with these types of diagnoses but doesn't require extra worry on my part. Of course, I might have totally misunderstood that or it may be only that way in my daughter's case, but I had always thought IBS just occurred with celiac disease.

Oops, edited to add...my brother had Crohn's and did receive disability for a short while because of it. It was a long diagnosing process for him. His weight went from 140 to 78 and he nearly died. After surgery in a different state (there were only two hospitals that would undertake the procedure), he wore a colostomy bag for a year before follow up surgery to 'create' a colon. After all of that, his weight leveled off and he went off disability. He was on it for about 2 - 3 years.

I live in a very rural area. There are three grocery stores - a discount store, a wal mart and a piggly wiggly. The Wal Mart is the only one to carry gluten-free stuff. They carry Pamela's choc chip cookies, one type of rice cracker (that I think is 'accidentally' gluten-free rather than deliberately purchased as a gluten-free item) and the Betty Crocker mixes. The nearest place to purchase gluten-free items (health food stores, whole foods, etc) is an hour away (one way). I go once a month to purchase Udi's, pizza crust, baguettes, etc. Otherwise, I shop amazon.

When is the biopsy scheduled? Our experience is that they are done fairly quickly (within a week) of a positive diagnosis.

If my child were that miserable, I'd call the doctor doing the biopsy and tell him that I wasn't going to put her in that much pain any longer and I was putting her on a gluten-free diet. My guess is that the doc will either try to move up the biopsy or will at least take that into consideration when reading the results.

Thanks Roda - after our middle daughter tested positive, we tested the others but neither had symptoms at the time. My youngest had a bad bout with a chest/cough virus thing about a month ago that caused her to miss 9 days of school (and was then followed by an ear infection). She has had stomach aches ever since (we used probiotics with the antibiotics).

My brother has Crohn's and has always claimed that it was triggered after a nasty bout of flu and I wonder sometimes if Celiac can also be triggered and if so, is that what has happened?

Anyway, she's still having stomach aches this morning so I'm probably looking at a doctor's appointment for mid next week with her unless something changes.

All three of mine are girls btw.

Dixiebell - sorry I should have mentioned that my other two kids have had recurring issues with reflux throughout their lives - not constant but it's a reasonable thing to try. So far, we've had great luck with the school system making a gluten free lunch. I go in once a month and look over labels and talk with the lunchroom staff. Because of all the preservatives and fillers, most of her food is bought locally so she has fresh meat, veggies and fruit. The other thing we need is the 504 plan that allows for her to miss school days if she's having a celiac reaction. I don't take her to the doctor unless it's significant (which happens maybe 1 or 2 times a year) because she usually starts losing weight and I worry about dehydration.

MacieMay - no, they haven't been gene tested. They had the blood test and then (for my second daughter, who is the one we worried about mostly) when it came up positive, we did the biopsy (also positive). Thanks for the suggestion - I'll do that after we give the reflux meds a few more days. Also, I should mention that our pediatrician is a two hour round trip drive (we live in a rural area). The doctor in town is good, but his office doesn't do lab work (and he's the only doctor in town that accepts our insurance). So, doctor visits are done when all else fails. (And we still have a ton of them).

emaegf - Thanks - I'll look into lactose intolerance as well. That wouldn't surprise me either.

I'll probably end up re-testing her before the end of the month. Thanks all!

I have a 9 yr old with celiac disease. I have two other children - both have been tested for celiac disease and tested negative. My oldest (due to numerous GI issues) has had two upper/lower GI's done and both came back negative for celiac disease. My youngest (6 yrs old next week) was tested a couple of years ago and it was negative (blood test). Lately, she's been having numerous stomach aches (as in daily). We tried miralax (thinking it was constipation issues) for two weeks (and everything came out 'fine'). We've tracked her diet to make sure there wasn't too much sweets, not enough food, etc. Our pediatrician told us to try reflux meds and we're on day three with no change.

She still has occasional diarrhea, occasional constipation and almost daily stomach aches. The stomach aches start about thirty minutes after eating - sometimes as quickly as while she is eating.

Is it possible to test negative (blood) and later have it come up positive?

For those who suggest to just put her gluten free, the school system needs a doctor's note to make gluten free lunches. (And I'd like to have their help with gluten issues). If I have to eventually put her gluten free, then I will.

Cheese, I was going to suggest fruit and veggie trays (but then I saw the pre-packaged comment). Pretzels? (Subbing with a gluten free pretzel). Fun yogurt cups (probably too expensive depending on class size).

I have visions of (not sugarplums) but chaos dancing in my head...Really, a classroom of second graders mixing things? I predict a food fight. lol Although I'm not sure if there is only one bowl of batter - if so, I probably wouldn't be too worried, but if each child has their own thing to mix, that's too much for my comfort zone.

I'd explain that flour is too light of a substance to be that close to your child and the concern that it will float around (for lack of a better word). Would it be possible for the class to do this project in the lunchroom? There would be enough space (not to mention easier clean up) so that she could be in the same 'area'.

My sweet little girl is going to be a Who from Whoville in the Children's Theatre play of Seussical in our town. I don't see any problem with the make-up since I can find products that are fine for her. To save me the trouble of looking through hair products and tearing my own hair out trying to decipher the ingredients, does anyone have any suggestions for me? The Who's all have some crazy hairstyles and top ponytails, buns, etc. She will have this in her hair for several hours at a time for several days straight. I'm looking for gel, mousse and super strong hair spray. She has very fine hair that is hard to keep styled anyway.

Before anyone says it - I KNOW that gluten products on the skin are not supposed to cause a reaction. We've had her tested for allergies and it was fine. However, shampoo and conditioner with gluten in it causes little bumps on the back of her neck and top of her back (where her hair hits) that itch. I don't know why. It is possible it's another ingredient in there doing it, but gluten free products don't cause the reaction. (It's what I call 'wet gluten' that bothers her - the bumps don't stay there but for a day or so, it just seems to react while her skin and hair is wet). Since she'll be wearing this goop in her hair for extended times, I want her to be comfy.

Thanks so much!