SilverSlipper

No, actually it is true. I suppose it shouldn't matter whether or not you believe me, but my original question is about elimination diets. She has a gluten reaction, maybe once or twice a year, and that's typically not my fault. That's really good for the past six years so obviously I've been doing something right with her diet. For her to be sick daily for the past week and a half is odd. My understanding has always been that celiac disease is due to an intolerance from wheat, barley, rye and sometimes oats. She has never had a problem with oats so believing that Lucky Charms is okay is not a huge mistake on my part. I have pulled it since we're not sure what is going on, but she had one bowl today, not daily for the past week and a half. 

She has received a great education in her diet. She googles if she's not sure, reads books about her diet and attends camps for kids with celiac disease. If anything we are overly picky. She is capable of making mistakes, and so are we, but after the first day of being ill, we were double-checking. Nothing has changed with what we feed her. 

We are all actually really good at this diet. Lucky Charms is something that years ago I was told was okay. (And it's not something any of the kids get on a regular basis, we don't typically use cereal).  When she was learning to read, gluten was one of the first words she learned. We told her if it said gluten free she could eat without checking with us. At her age, she educates others on what she can eat. Mostly, we eat meats, vegetables and fruits. My husband and I do the shopping and check. She double-checks. 

We buy gluten free bread and noodles. We make most of our own sauces and jellies. We have dedicated toasters. There's not much to err on with her food. We've been double-checking for the past week to see what we could have missed, but I'm coming up blank. I'm still going through our pantry and I can't find anything. Her foods are the same as they've always been. 

argh! Six years on the diet and I'm STILL trying to figure things out. After some googling, yeah, the Lucky Charms aren't okay. I guess I became too relaxed because she had no problems with oats (we purchase the ones that are certified gluten free). We don't eat Lucky Charms often (actually I bought them for me, lol) so that's not what's caused her problems in the past two weeks, but that can be what's caused her problems today. So, dairy may still be the culprit. 

The Lucky Charms we only started eating today. But...we've always eaten them. She doesn't have problems with oats. Was there another ingredient that makes it not gluten free? (Regardless, I'm taking her off of them until I know for sure). 

Yes, the problems have only been for two weeks but they're incapacitating. She cries, moans in pain and usually can't get out of bed or off the couch. We homeschool, so school work is slow but still continuing. She ate a banana and water for breakfast this morning because she had a theatre audition. She did get the part she wants, but now we're under pressure to get her better, quickly, so she can attend rehearsals. And honestly, the pain is now at a point where we can't control it with her medicine for cramping. So, I think a doctor visit is quickly heading our direction. 

I'll try the probiotics and see if that helps any. 

That was my first thought as well. She hasn't had any dairy today but is still sick with D and cramps. Today she had a banana and toast with water for breakfast. She had boarshead lunchmeat and grapes for lunch. She had Lucky Charms (no milk) for a snack. 

I'm not sure if it would take a few days of no dairy to stop her symptoms? We've stopped the dairy for now.

Any other suggestions would be appreciated.  

My daughter is 12 years old and has been gluten free since she was 6. She strictly follows her diet and with very few exceptions our household is gluten free. She's considered very sensitive but not super sensitive. The only thing she's ever had a problem with, other than gluten, has been pork products that are Publix brand (I have no clue why, but bacon, pork loin, etc make her sick). 

For the past week and a half, she has become sick with stomach cramping and some diarrhea nearly every day. I believe that I've read that people with celiac can develop other intolerances and I think this may be what is happening. 

She has always tolerated dairy and loves to drink milk. Can someone give me some tips on how to start an elimination diet? Do I start her on just rice morning, noon and night? Or just leave out one food group every few days? Or a food journal to look for patterns? What is the easiest and most efficient way to get to the problem?

Also, we have a family history of Crohn's. Should I take her to the doctor for more blood work? Thanks for any suggestions.  

Thanks for all the replies. We're home! We came home yesterday and I immediately went to the store. It was one of those trips where I had no list or menu in mind. I had little time to plan and just bought meat, veggies, fruit, milk (whole and full cream) and cheese. (We live 30 minutes from a decent store).

I am actually grateful that the kitchen staff refused to guarantee it. I think it's ridiculous, but I'd rather people be up-front and tell me they can't do it than to just guess at things. I do think it's possible to cook gluten free though. Aluminum foil and steamer bags can do wonders as long as the prep/cutting area is safe. It was an odd situation - the doctors and dieticians maintained that it could be done, the nurses were uneasily caught in the middle and relaying the concern of the kitchen, and the kitchen staff personally told me that they weren't familiar with what to fix and for me to please double-check it. (Most of the problem was due to concerns about preparing - my daughter is sensitive to cross contamination). No matter who spoke to her, my daughter's answer was always a polite refusal. (She wasn't upset or mad, she simply refused to eat unless it was sealed and she personally checked the ingredients).

The other frustrating thing was that I never knew what was going to come up on her tray. (I kept ordering, hoping for individually wrapped things. I would eat her tray if it was edible. The food there is not too bad, but this was bland, bland, bland.) We went in on Friday, but didn't receive meals until Saturday (through Tuesday). Some days chocolate milk was okay, other days it was not. (She refused to drink it anyway since she didn't recognize the brand and she's been glutened by chocolate milk before). Ranch and Italian dressing caused confusion and some days they would send one, other days they would say Ranch wasn't safe and would only send Italian. I always asked for pudding cups and margarine, but neither was determined to be safe. If they weren't sure if an item I circled was okay, they marked it off and sent the tray without it. One meal was only steamed cauliflower and a salad. The gift shop had cheese popcorn and yogurt. We lived an hour away from the hospital, so I couldn't easily leave.

Apparently, during removal the appendix ruptured and that is what they are blaming the extra pain/discomfort upon. She is currently pain free but moves slowly and carefully. She is 11 yrs old and weighed 58 lbs when she went in. She now weighs 54 (although I'm sure some of that is from mild dehydration which I could tell she had when we left).

She is drinking a lot now and my husband made spaghetti and garlic bread for dinner last night (she ate about 1/3 of it). I have wonderful things planned to cook today so I feel good that we're on the upswing. I still plan to write a nice note and let Children's know of my experience. If nothing else, they should be able to keep frozen meals on hand or shelf-stable soups/food that could be safely prepared.

Thanks for everyone's comments. I appreciate them and am SO happy to be home.

Most hospitals have patients representatives/advocates that you can lodge complaints with. See if they have that there.and contact them ASAP?

Your daughter should be able to eat bananas or applesauce which are usually not opened..and therefore safe? I find it maddening that they can't safely feed your daughter!

Yes she can eat those. She has had applesauce. It would be good to have actual food though. They want her to have a bm before leaving. I plan to talk to Dr today and tell him she wont because she wont eat until we are home. She wants food but I cant get what she wants here.

A friend went to a health food store and an employee helped her. I have doughnuts and chix nuggets meals (gluten-free). The nurses have been upset and encouraged me to write wheen we get home.

We cant leave early. They wanted to send us home today but her recovery is slower than expected. She cant walk yet and hasn't felt like eating. I hate that you had problems too.

(Typing from Ipad plz excuse errors.)

Fri my dd was not feeling well. Ended up in er with appendicitis. Appendix removed sat morning. Afterwards the nurse said the cafeteria would not guarantee a gluten-free meal. (We are at children's hospital) . Dr and nurse spoke with them and they said they would do it but no guarantee. Dd wont eat but I sent a friend to store for me. So frustrating!

She still has pain and cannot walk. We hoped to go home today but cant until shes better. Is there any connection between celiac disease and appendicitis or difficulty recovering from abdomen surgery? I am desperate to get home (an hour away) so I can cook again.

(Sorry typing on my laptop which means I'm prone to mistakes)

Karen - her carrying medication (without a label) was what bothered me. I wouldn't want anyone to see it and think she is carrying something illegal. The medication is actually fairly harmless (IMO). My other daughter takes one daily in the morning to keep tummy aches from developing (suspected IBS). So, yes, I do trust her to take it with her and not take it unless necessary.

I will probably ask the pharmacy to give her a small dose/bottlt to carry as another poster suggested. I may go ahead and ask her GI to write a small note verifying she has Celiac Disease as well.

Thanks

Hymox is an IBS/IBD medication, does she have either one of those or was it rx'd because of the severe cramping that she gets when gluten is injested? My son has this rx'd but he is an IBS, most likely IBD, kiddo but can not take it since he has severe dysmotility in his intestines. Hymox stops the intestinal spasms, and it WORKS but for us it literally stops the intestinal tract...not a good thing when you hardly have any movement to begin with.

I would never let my child carry any type of medication that is not in its orginal container-anywhere.

I was told IBS basically came with a Celiac diagnosis although the comment may have been directed towards my child only. She takes it due to severe cramping that is literally crippling during a celiac reaction.

My soon-to-be 11 yr old daughter has Celiac. She's great with her diet, very strict on what she eats and watches other people like a hawk if they are preparing food she will eat.

Occasionally (a few times a year) she accidentally ingests gluten. The reactions are ugly - vomiting, diarrhea and cramping so bad she literally can't straighten up.

She visits other family members often and usually carries a little purse with a gluten-free snack in it. She also carries her own hand sanitizer (since other kids touch other bottles), band aids/neosporin. She wants to carry a few of her prescription pills (hyoscyamine) with her in case she gets sick. I think it's a great idea since it allows her to treat her own symptoms rather than frantic calls to me to quickly bring her stomach medicine. Realistically, she probably won't need it. However, relatives have asked if she could bring it "just in case".

My concern is whether she could get in trouble for taking prescription meds (not in a bottle) around with her. (Not at school, but to VBS, church, other's houses, etc). Can I get a doctor's note for her to use validating her need to carry medicine? Thanks

I let my 10 yr old cook although it's a progression of things (for example, she can use the oven independently, but not the stove). She first started by doing box items, cake/brownie mixes, no bake cookies, pudding, etc. We don't really use cookbooks a lot (although I love to look through them for ideas). We find our favorites and she uses our recipes.

She made dinner last night from a pork loin (marinated in mojo sauce), steamed rice (from a rice steamer), and steamed veggies (steamer bag in microwave). My littlest (who is 7) is making chili in the crockpot tonight (we have our beans cooking now and she'll add items I have prepped for her).

I think it's good to teach kids to cook. Simple things first, then more complex. They can always help by measuring, washing food items, etc.

My daughter has a diagnosis of failure to thrive due to celiac disease. (She is 10 yrs old by the way). She is considered very small for her age though she continues to grow (height and weight) in small increments. She has been tested in every way possible and her doctors have decided that she's simply meant to be small. Though she's small, she's very bright (gifted), and athletic (she plays both soccer and does cheerleading - she also takes karate). She also participates in Children's Theatre and just received one of the medium sized roles (which is a huge deal for her) in an upcoming musical. There's nothing wrong with being small. If you are still concerned after a few more months have gone by, talk to your gastro about it. Good luck!

My step-mother has celiac disease (DH). She tells others that she can have some gluten, but if she eats it too much, her skin really bothers her. I know another Mom who has celiac disease who states that she can have small amounts of it occasionally (for example - rice krispy treats).

In my humble opinion, I think that they have over-simplified the situation. I think any amount for someone with celiac disease damages the body. I believe that many people think that the damage doesn't occur unless they can see or feel it. For example - the foundation of a house may crack, but sometimes people won't bother with it until the whole stupid thing crashes to the ground. Again, just my opinion.

My daughter can't get away with occasional pizza, soy, etc. My guess is that the child in question in the OP's post doesn't show outward symptoms unless they have moderate to heavier amounts of gluten.

Our doctor is Dr. Cavender in Alabama. He has a niece with Celiac Disease so he tends to "get it". Plus, he's good at knowing what stores carry what products and even how to adjust some recipes to make them gluten free.

Our middle daughter with celiac disease was so textbook perfect that it makes getting a diagnosis of some sort for my youngest, difficult. Our middle daughter had classic symptoms, positive blood, positive biopsy, positive response to diet and a follow up biopsy was perfect. After taking out gluten, she thrived in every way. When she has gluten, she collapses for about a week or two, depending on the severity.

Our youngest has just had difficulty figuring out what's wrong. I don't know if she has celiac disease, but she has something going on. I've had some doctors (and relatives) suggest that she was faking stomach aches, and one even suggest that she was making herself throw up for attention. (Nobody has figured out how she could be faking the diarrhea). She is 6 yrs old and all of this started last December. Regardless, we're going to do what makes her feel better although they typically gasp when I tell them the restrictions. But, it's not THAT difficult. And if it will keep her feeling better then I really don't care what they think. (Okay, rant over. lol).

I'm just really happy to have the biopsy finished.

My six year old had her biopsy today. It has been a rough two weeks. We had taken her off of all diets and meds (although they later re-added the meds for stomach cramps). She has spent the last two weeks sick, alternating between vomiting and diarrhea with stomach cramps so bad, she crawled along the floor rather than walking at times. The nausea and exhaustion was so bad that a couple of times she fell asleep in the bathroom with her face on the toilet seat. Over the past ten days, she was late to school four times (we simply couldn't wake her up), left early three times and missed three days. She lost three pounds in those ten days (partly because she started sleeping 12+ hours a day).

Overall, our GI said the biopsy looked good. He saw no tumors, ulcers, weirdness, etc. He said the small intestine did look a bit off, but that was the only area. He said the results from the biopsies and other tests would come back probably after Thanksgiving.

He sat down and talked with me for a bit (which I really like, he's a talker and takes the time to really listen). He asked me what my 'gut' was telling me. I told him that something was wrong with her and that regardless of the biopsies I planned to move her back to what worked (gluten free, most dairy - free and no fruit juice). He said that if the biopsies came back clear, that he wanted to look at a few other things, but he supported me in whatever diet I chose. He said even if the Celiac test came back negative, that he was a firm believer that some people are simply gluten sensitive and should avoid it. He said he would write whatever notes I needed for the schools to let them know she had medical issues and needed a special diet. (I really like that about him as well).

I'm really glad to have these two weeks over and her biopsy finished. (I hate the effect anesthesia has on the girls). It feels great to remove gluten/dairy things away from her now and start feeding her food that makes her feel better. I'm done with all the other tests for my other daughter as well (teeth removal and bone density tests). I'm so glad to be finished with doctors for a while so I can concentrate on the upcoming holidays.

Thanks all We're back and everything went fine. She had a few extra stitches, a bit more than we thought, but she hasn't been sick and we were able to start pain medication before the numbness wore off. They said that by Friday she should start feeling better.

We've known since she was 2 yrs old that she had significant crowding issues. We started seeing an orthodontist last year at our dentist's urging and had two baby teeth removed to help some teeth straighten out. I think the biggest problem we are having is that two of the teeth are jammed together (almost head to head) which has caused some bulging issues in her gum. That is where she has started feeling a lot of pressure. The bulge is so large, it is causing her jaw to look funny when you look at her face. Looking at the x-rays, I'm seeing the problem, there is simply nowhere else for her teeth to go.

It did sound excessive to me but once I started talking with other friends (who use different orthos), her dentist and the oral surgeon, I'm convinced that it's necessary that they come out. And I'd rather do it all at once, than in separate times. She's a bit phobic already and is dreading tomorrow.

She may still need braces at some point, so I think it is a bit of a guessing game. The six that are being pulled are all baby teeth, so they would have come out anyway at some point. The two being cut out are permanent teeth but there's truly nowhere for them to go.

Thanks for all the suggestions, I just came back from my out of town shopping with plenty of soup and broth. I also picked up hummus and breakfast (hot) cereal. I did buy straws but will make sure she doesn't use them. I've had dry socket before and it's horrible. I wouldn't wish that on anyone. I'm about to go pick up my local items - ice cream mostly . Thanks again for everyone's concern.

My Celiac daughter (who is 10 yrs old) is due to have eight teeth removed on Wednesday. We had tentatively schedled surgery for early December, but this past week-end she started having some pressure feeling in her jaw. We saw her oral surgeon today and he's upped the surgery to take place Wednesday. She is having two pulled on her upper left and right side, one pulled on her lower left and right side. There are two (one on each side, upper) that haven't emerged yet, that they will go into her jaw and cut out.

Any soup suggestions? We live in a small, rural town and I plan to go to the nearest city and purchase some gluten-free things to make it easier tomorrow. I'm making potato soup, but that's as far as I've made it (although I think I can muddle through chicken and noodle). She can't chew for several days and will also have stitches. So, no spicy, solid type soups.

I'm making pudding and also sweet potatoes (baked with butter, brown sugar). Ice cream of course.

Any other suggestions? And, what can she drink other than water? He gave me her prescriptions today so I can fill them tomorrow. Some neighbors have offered to make food, but I'm worried they will gluten it up by accident. My youngest hasn't been feeling well and my oldest is disabled. So, I'm a bit under stress. (Due to some bizarre work related stress, my DH can't help out more this week than what he's already doing).

Thanks for any suggestions.

Thanks for all the suggestions. I'm making a list to discuss with our gastro before our appointment. I truly apologize for not replying to this thread earlier, but I've had another daughter crop up with some medical issues that has me a bit side-tracked. My pediatrician thought the Eosinophilic Esophagitus was possible and is hopeful that the biopsy will offer up some answers.

Thanks for the suggestions. It's possible that she is receiving cross contamination based on your list.

Our doctor has removed all diets and medication and she is going in for a scope in two weeks. She was so exhausted after school that she fell asleep right afterwards.

I'm not really sure how she will make it the next two weeks.

Some of our family members get it and some do not. Ironically, my dad and step-mom are the worst and she is diagnosed with celiac disease (she has DH, but no stomach problems). We decided last year to avoid family holidays during meals. We go visit at other times.

This year I'm preparing Thanksgiving dinner and inviting everyone over here. It will be quite a bit of work, but I can't wait to see my daughter's face when the meal is ready!

I'm posting about my 6 yr old who is not diagnosed with celiac disease (my 10 year old does have celiac disease). My 6 yr old is having a ton of tummy problems that I've been posting about here. Recently, our doctor put her on a gluten-free diet to see if it would stop any of her problems. She has daily stomach aches that we treat with Bentyl (which seems to help and it's the only thing). She also takes an antacid AFTER eating (which also helps her stomach). We can't seem to change the Bentyl to anything else without it being a problem. And we can't remove the antacid either without a problem to her stomach.

She had daily diarrhea that would happen within half an hour of eating dairy, so we removed most of it (milk, butter, sour cream, ice cream). We noticed diarrhea also with fruit juice so we removed that too. Our gastro told us to try the gluten-free diet again and see if it worked better without the other things in it. We went gluten-free on Monday and by Wednesday her diarrhea was gone. The school accidentally (sigh) gave her a cupcake on Friday and she had diarrhea that day and Saturday. She's had no diarrhea ever since.

However, since starting the gluten-free diet, she's felt queasy. This has increased to the point of feeling more and more like she would throw up. Yesterday, she threw up after breakfast and lunch. She ate only a small amount for dinner and was able to keep it down. It's not large amounts of vomiting like one would see with a stomach bug and it only happens when she eats a meal. She had horrible stomach aches this morning until she took her medicine. Then she felt fine for about thirty minutes and now (having had breakfast) feels like she is going to throw up again. I would swear that she is not ill but she's also exhausted yesterday and today. She fell asleep on the way home from school and stayed in bed until dinner.

I know that there are no trace amounts of gluten getting in her food as my other daughter is VERY sensitive to gluten. They're eating the same things.

Any ideas? I think I'm giving up and getting a scope because her stomach aches are increasing on the gluten-free diet and the vomiting seems to be a pattern. I don't know if I can send her to school until the vomiting clears. She's home today. I'm most puzzled by why she is worse (but better) on a gluten-free diet.