SilverSlipper

I thought H. Kisses were safe? (Or was it something like a cookies n creme type?).

To answer the question, over time I learned that self-forgiveness was necessary, not just for gluten infractions but for many things in life. I try to be a better person and learn from mistakes rather than dwell on them.

I try to make it up to my daughter by letting her pick out some really yummy gluten-free things when she feels better and by trying new recipes that delight her.

Hope your little one is better soon!

The kids and I had pizza! (and some halloween candy - we're getting a head start).

We saw our gastro today and he changed her medicine for her stomach ache again (she hates the taste of the other one). He said he was struggling to accept her negative diagnosis for Celiac Disease considering our family history and wanted to try another temporary gluten free diet to see if it helps. So, he wrote notes for the school and we're back on gluten free (lactose free and fruit juice free as well). We do that for 30 days but after ten days he said to try some imodium ad if she still has diarrhea. After a few days, we will stop the imodium ad and see if it starts back up.

We see our pediatrician on Thursday and I plan to ask him about re-testing some things as the cough simply has to go.

Sorry for the double-post, it won't let me edit for some reason.

I wanted to add that our doctor has diagnosed her with sinus infections and things like that, but I didn't gather that this was a big deal, more of a 'catch-all' for various stuffy noses and such.

She has seen an allergist though and I would think looking at her sinuses and any potential problems would have been on their list - especially as most of the doctors we see know that we are in a searching mode for what is going on with her.

Our pediatrician is puzzled but since she is not losing weight and is still growing, he is not overly concerned except with the cough.

We live in Alabama. She has chest x-rays when she gets sick to see if it's progressed to pneumonia (occasionally it has, but we typically catch it quickly).

The allergy tests were done about six months ago and surprised everyone. The allergist had anticipated that she would have some seasonal allergies at least, but everything came back fine.

The CF test was a blood test. We didn't do a sweat test on her because our other daughter's sweat test had come back as questionable which is when we did bloodwork and found out she was a carrier. We skipped the sweat test on our other two daughters and went straight to blood test.

I'll ask for another cf test and I'll check into tuberculosis and some of the other things mentioned.

Actually, we've looked into asthma as well. (And honestly, other than the anesthesia questions, I'm open to ANY suggestions in regards to her health). Our pediatrician thought she had asthma and when we went to the allergist, they tested her and said she didn't have asthma, just some wheezing issues during illness. During her last 'illness' that triggered her coughing/breathing problems, the emergency room doctors told me to quit calling it bronchospasms (which is what we were told it was by our regular doctor) and to call it asthma, because that's what she had.

Right now, she has the cough but not breathing problems. Most of the time, she has significant breathing issues when she has illness (which triggers the coughing). She starts wheezing, turns pale, eyes bulge, her head lowers to her chest and she starts panicking.

Thankfully, regardless of the discussion of what is going on, it's treated adequately - she has an emergency inhaler, maintenance inhaler and we purchased a nebulizer when she has lots of difficulty. If it gets too bad, we go to the ER and they give her more powerful medication to get her over the worst of it.

She is a carrier for Cystic Fibrosis but does not have it. I confess to wondering if we have a false result for that but our pediatrician seems sure that it's negative other than as a carrier. My daughter with Celiac was tested for CF first and she is also a carrier, but does not have it. When we took my youngest for allergy testing, they wanted to test her for CF until we told them we had already been tested. (Her stomach aches get better on steroid treatments for her coughing).

It's possible we missed something with her allergy tests but we went through a lot of detail - they tested for seasonal allergies, at the time we lived in an old home, so they tested for mold, etc and we have outside pets, so they tested for animal dander, etc. All negative.

The diarrhea has increased and she is starting to have accidents by not getting to the bathroom in time. I didn't realize how much this bothered her until I found that she was stashing soiled underwear from embarrassment. I told her to just throw them away but let me know so I can buy more.

I'm thinking about asking them to re-test on the CF just to be certain.

I know this is a question best left for the doctor to answer, but we are having one of those weeks that will be tightly scheduled.

We see our gastro this week and I anticipate my youngest will need to have a scope (upper/lower) soon. This is not for my daughter with Celiac, it's for my youngest (tentatively diagnosed with IBS). She has daily stomach aches and diarrhea since about last December. The various meds are not working. A trial of gluten free didn't help. Cutting out milk made things better for a while and so did cutting out fruit juice. (She's not allergic to anything and is not lactose intolerant). Limiting high fat items also helped. (She's six years old by the way).

However, she has a nasty cough that has lingered for about five weeks that our pediatrician can't seem to get rid of. She has that deep, hacking, smoker's type cough. Her medications for it vary, but she's on about four of them right now (eight is usually the maximum when it gets really bad - this is a chronic thing as well). It's worse in the fall/winter, but I really don't want to wait for spring to do the scope.

Are they going to be able to do a scope when she has chest problems like this? I worry about the anesthesia. I plan to ask our doctor as well, but I wanted a parent's viewpoint as well.

Thanks

Our dentist told us last year that she had attended a conference where Celiac Disease was brought up. She wanted us to know that she uses only gluten free items (although most are already gluten free).

Having said that, my daughter went to the dentist on Monday and by that evening was throwing up with diarrhea and stomach cramps so bad she couldn't walk. She's still home from school today. We're not sure if she caught a stomach bug (unlikely since we usually all get them when they happen) or gluten from somewhere else (possible).

I was wondering if it somehow came from the dentist office so no, you're not paranoid. :)The best thing about this board (as I've come to find out) is that you can ask questions that you may be too embarrassed to ask elsewhere and receive a kind response.

Have you checked to see if she has any reflux? The sore throat could be a burning from the reflux. There are a number of over the counter products that you could check for a couple of weeks to see if it would help.

Good luck

Hi Mom2CjJaedonEthan,

Have you taken him gluten free? If so, that's great! If not, the parents here are so knowledgeable and can help you through that process. Can you get a referral to a pediatric gastroenterologist?

All the best...

We have found that bacon and eggs are okay for her. (However, one's sensitivity may vary so another person may react). I usually don't get into the pan, etc discussion unless they are using a concerning pan (colander for example). I make sure to tell them that the food can't even share a plate with gluten containing items. I usually don't send bread as I worry they will toast it for another example.

I may have to change this in the future, but for now it's working. The most important thing is to be casual about sending food over. I've discovered many nervous parents but when I pick her up they all tell me how easy it was to make her food (tv dinners and stuff I send over). The best end result is another sleep-over invite!

When my daughter spends the night, I usually call the parents and ask what they are having. I then explain her diet and ask if I can send a gluten-free tv dinner instead. They are usually relieved. If they are making bacon and eggs for breakfast, I tell them to go ahead. Otherwise I offer to send cereal (Lucky Charms is always well received if your child is okay with oats). For snacks, I tell them fresh fruit, popcorn and plain potato chips. If they are nervous at all (and sometimes they are), I send it all over and thank them profusely for hosting a sleepover fun visit for the kids.

It also helps that my daughter knows her diet very well. They feel better after she lets them know what she can and cannot have.

I try to come across with the attitude of "we've done this a million times and it's no big deal" to keep other parents from being nervous.

I completely agree with KarenG, however, I had a thought regarding the school. Can you have your doctor write a note that you are doing a trial of gluten free to resolve whatever issues she's having and at least have the school help out, even if it's just to microwave her food?

Juliebove, my daughter had a similar problem when her lunch time changed to the latest time. She kept having stomach aches around 10:45 every day. Her school allowed her to take a small bag of trail mix into class and eat it quietly at her desk. Your school would probably allow similar. I don't think it's an unusual request at all. GOod luck.

The post from this site is old, but the ideas are timeless:

Open Original Shared Link

They always give me great ideas when I get stuck for what to send. My daughter eats lunch mostly at school (they cook it separately and gluten-free for her), but for field trips, spend the nights and snacks, sometimes I struggle.

Good luck

The school prepares her lunch so lunchmats would only be helpful at snack time, but I may do that even though she has her own desk. That's a good idea to check the baby section for washcloths. Anytime I think of school things, I take what my ideal solution would be and temper it with how it would look in practice. Then I factor in teachers, class size and what I think my daughter would do.

I wish schools were more pro-handwashing. I think sanitizer is abused and over-used.

My daughter was diagnosed her kindergarten year and we immediately began teaching her what she could and couldn't have and how to read ingredients. I can understand wanting to remove your kids from an environment of food they cannot have, however, Celiac is a life-long condition. They won't be able to do that forever and I'm not sure that removing them is a practical solution. You may want to consider sending them in with their own bags and bags of junk food including items to share with friends (if that is allowed). Depending on whether you like to cook, you can make some 'knock-off's' of various goodies that are really, really good.

We've lived in two different districts but both were agreeable to providing gluten free lunches and classroom accomodations. My daughter has a 504 Plan in place as Celiac Disease does affect one's ability to learn if it's not managed. Schools have a legal requirement to do these things but I understand that not every district complies.

I would start by getting a note from the doctor who diagnosed them that they had Celiac Disease and asking her/him for handouts for the school. Then I would approach the teacher and try to work out what you need (since it doesn't sound like you are going to ask for other things, just the birthday situation). A good suggestion is for there to be one class party day each month where all the kids' birthdays (in that month) are celebrated. I know that some districts allow two items brought in - one sweet (usually cake) and one salty (chips/pretzels). Nothing else. In that case, you could send in a gluten free cupcake and chips without it being a big deal. I've found school districts to be agreeable especially if there's not much for them to do. So, I've always suggested that parents approach schools with a 'partnership' frame of mind.

Good luck!

I think soap and water is 'old school' way of thinking. Honestly, it never occurred to me to even ask about washing hands because I simply assumed that of course the whole class does. However, the invention of hand sanitizer has done away with that in schools it seems. I'd love to hear what schools are doing elsewhere.

Here, you use hand sanitizer before lunch and snack. You wash when you go to the bathroom. Everyone shares sanitizer bottles (I send one separately for my daughter because I worry that she will get contamination from the bottle itself - lots of kids here eat breakfast at school and their selection is typically poptarts, cereal and sometimes biscuits - they sanitize their hands coming in the classroom door after eating).

I've decided to buy some type of sani-wipes like you sometimes get at restaurants (or used to when I was a kid anyway). I like the idea of sending a washcloth in a bag but I know she's looking for discreet and fast. Now, if I could find a way to make a washcloth look cute and trendy, we'd be onto something - lol. I might look around and see if I can find something that I could cut down into a smaller shape.

Perhaps Veruca meant that she was put off by those who self-diagnose and treat the diet casually. I think we've all met people who behave in that fashion. However, I also know some medically diagnosed with celiac disease who also do this. My step-mother has DH from celiac disease and only follows the diet when the rashes are about to drive her crazy. Even when she cooks for our family, she messes things up (which is why we don't eat at their house anymore). The last incident involved a gluten free casserole that she crumbled six saltine crackers into to help thicken it (she used gluten free noodles and everything). She couldn't believe that I would refuse to let my daughter eat it over six crackers. I couldn't believe that anyone with knowledge of celiac disease would think a single saltine cracker was okay.

Gluten free diets are becoming trendy and some of those people are downright scary. They do not know specifics about the diet and I do feel misled when they announce they have celiac disease (because they assume if they can't tolerate gluten they must have it) and then offer my daughter a rice krispy treat (not gluten free) because regular cereal doesn't bother them so it shouldn't bother my daughter, right? (Yikes!)

But the people who treat this diet casually would never be found on this forum. Seriously. I trust the people here (diagnosis or not) because they do take it seriously. And how sad for my daughter when she meets gluten free friends who are allowed pizza hut pizza every Thursday night for their 'gluten day' before going back on a diet. Then I have to explain how there's really no such thing as a gluten day for her condition. Even the smallest amount of gluten makes her sick for nearly two weeks.

Just to make sure my point came across clearly - self-diagnosis is fine with me and I agree that they actually have a harder time of it (medically) than those with the gold standard of diagnosis. The people who drive me nuts are the ones who do not take the diet seriously and feel that others shouldn't have to as well. And they can be found with and without a medical diagnosis.

Like many of you, I'm sorting through back to school stuff for my daughter with Celiac. I realized last year that her class didn't go wash their hands before eating lunch or snack - they simply applied hand sanitizer. I told her that she needed to wash her hands, and she would, kind of. She didn't like being the only kid that had to go wash her hands and then she was late getting in lunch line, etc. I suspect she's skipping the hand washing because it's so much trouble.

I'm thinking about sending individually wrapped hand wipes with her to use. I feel like that is different than sanitizer because the sanitizer basically stays on your hands. With a wipe, she could actually remove things off her hands. This wouldn't be as good as washing her hands, but a step up from sanitizer.

Am I correct in my thinking?

Hi Celestial, I live in the Bibb Co area so not too far away. I'm not gluten free, it's my daughter with Celiac. However, our whole family is gluten free (with occasional individual cheats) for meals, holidays, snacks, etc. If you start a support group around there, I'd love to come.

Our school so far has been great to work with. The cafeteria manager understood about cross contamination and they kept a separate (new) cutting board to prepare her food on. One specific person was assigned the task to make her lunch daily after the manager prepared the menu. I was given a copy of the menu a month ahead so I could double-check questionable items (taco sauce, bbq sauce, etc). I always remember the cafeteria staff at holidays and end of school with gifts and thank you notes.

The teachers have been great as well. My daughter has her own supplies (everything, including sanitizer) and class parties included my input (although sometimes I simply sent the item, especially pizza parties). I've asked her teachers to discuss her diagnosis respectfully but casually with the class when the subject comes up (How come she doesn't eat regular cookies?, etc). I was really surprised at Halloween when the kids were exchanging candy. The majority of the class made sure to purchase candy that was gluten free and told her that they asked their parents to buy her something they knew she could eat.

If there is a class party, I send in a cupcake (or candy if I have no time) so it's not so difficult. Sometimes 'surprise' parties happen at school and she typically just politely refuses the cupcake/cookie and then I do something special for her later.

The teachers are aware that she may have to bolt from the room to dash to the bathroom if there's a problem. My daughter is aware that she's expected to follow classroom rules and not abuse the privileges she has.

It's worked out for us so far. She is going into 4th grade this year. I have heard that the middle school lunchroom is not goood at all, so things may be difficult in the future.

I think a person's experience is directly related to how willing the school is to work with them.

Thank you all for your replies. I'm sorry it's taken so long to reply. When I feel completely overwhelmed, I tend to run from thinking about a situation and this one has bothered me quite a bit.

To answer a few questions, my oldest is severely affected by autism and seizures are something that we've always been told to expect. However, her seizures have never been verified by an EEG and she is on no medication for them. Her school is almost frightened by them as she seems to have some 'visual disturbances' and tries to fight an invisible person. She's frightened and has super-human strength during those episodes, even throwing a table once. All of the staff agree that she is not aggressive towards anyone and that she appears very frightened and upset. These have been witnessed by numerous school personnel who were kind enough to write notes for our neuro. They don't happen often, but we never know when they will happen. My daughter is non-verbal with limited comprehension. I'll definitely try gluten-free when her symptoms pop up again and see if it helps. She also has a diagnosis of abdominal migraines.

My middle daughter is the one with Celiac and she has always had it with classic symptoms which led to her diagnosis. She diagnosed easily with both blood and biopsy. Her follow up biopsy a year later showed that she was doing great and healthy on the diet. She still isn't growing much, which is a concern with our gastro. But, she's an over-achiever everywhere else.

My youngest has no medical diagnosis and is average height/weight. We had a good doctor's appointment other than the stomach issues. He suggested we go dairy free to see if that helped matters. He also suggested an endoscopy because she frequently coughs/spits up when she drinks fluids. We always ignored it because she's the youngest and I guess we thought she would grow out of it, but she hasn't. He agreed that at 6 yrs old, she should not have these types of problems with swallowing. My husband's worried that perhaps she has some type of throat abnormality or obstruction that makes it difficult to swallow. (For instance, my dad has a 'shelf' type growth in his throat and needs to drink a lot of liquid when eating or he feels like he's choking). I came home and made an appointment with our gastro to discuss an endoscopy, concerns about celiac and lactose/fructose intolerance testing. Her appointment is next week.

When I told my mother about the appointment, she accused me of having Munchausen's and said that I could kill my youngest by doing an endoscopy because the procedure could involve puncturing parts of her bowel, etc. That, of course, led to an argument and she agreed that she wouldn't speak of it anymore with me but she wanted me to know her feelings on the matter. I, of course, feel horrible and wonder if I'm wrong about having the procedure. Since that time, we've figured out that no milk means that her diarrhea stops, but she still has stomach aches. We're looking into reflux medication helping the stomach aches which (we think) may be working. We don't have an answer for the coughing while drinking.

I'm still going ahead with the gastro appointment and I'm a bit distant with my mom at the moment. I don't discuss the kids with her at all.

Also, I'd like to have a medical diagnosis to help with school lunches, etc. They are great to work with, but they need doctor's notes to make things happen.

My daughter is the one with Celiac (although I did have some emotional moments at first trying to figure out what to cook!).

Top thing for us would be the support of family and friends. When my daughter first received the diagnosis, I literally cried. I wasn't scared of a serious condition, I was upset that my whole way of cooking, shopping, etc was changing and I didn't know what to do. My daughter's best friend's mother went shopping and bought several box mixes of gluten free items and brought them over. She also bought a duplicate set to keep at their house and invited my daughter over to spend the night. They ALL ate gluten free when she visited. It's that type of kindness that makes me want to be kind to everyone on the planet because it was so unexpected.

Exercise - she loves to be outside and active. I love seeing her running around and healthy.

New gluten free items - she loves to find new gluten-free things. Her latest is ice cream cones.

gluten-free camps - God bless them. The camp experience with gluten-free food thrills her.