tfrankenberger

Our orthodontist wants to make impressions again, but now we've got the celiac diagnosis and nothing is going in my son's mouth without a thorough check! Anyone know anything about having to get impressions and makings sure the stuff they use is gluten free?

They're calling the manufacturer of the product, Benco eluminate alginate

but I can't find much info at all about this product on the web.

He says as a back-up they could do a silicone impression. Anyone know if those are safe??

We've made a few roadtrips where we had to stay in a hotel for a couple of days. What I did was prepare meals ahead of time that I could warm up in the microwave for us. We only have a family of three, so that may not work for you. We have not eaten out with our Celiac child in a year due to fear of cross contamination. We just do not feel it's worth the risk right now. You could at least prepare meals for her to either eat before you go to a restaurant or warm up at the restaurant and have her eat safely.

Symptoms can and will continue until her intestines have healed. It is my understanding that the damage and inflamation in the intestine will keep the person from digesting anything well for a while. As healing progresses, symptoms should get better. This could take a few months.

Anyone have a doctor want to do a growth hormone defficiency test? This is a three hour test where they stimulate the pituitary gland and see if you're producing the growth hormone.

My son has fallen underneath his growth curve. He's always been small (5th percentile). Since diagnosis last year of Celiac he has fallen to below all percentiles. I feel he has shown significant improvements in the last three months. Just did a bone age scan...waiting on results. He is in early puberty even though he's 15. His doctors say he should continue growing long past his peers since he was delayed in onset of puberty, etc.

Just wondering how many of you have dealt with this....tired of tests and want to wait and see....but don't want to ignore doctors completely.

Anyone out there have a child on a gluten free diet who has now become unable to eat rice? My son has been on the gluten free diet for a year and we've still been dealing with many issues of nausea, heavy head, excess gas, etc. We've had so many tests run and the Celiac seems to be under control, and the doctor has no clue what's still causing the symptoms. He seems to obviously be reacting to something he's still eating. I took him off rice for three days last week, and all rice-based products, just to see. He had three days of no symptoms. I'm going to continue this for a week and see if the symptoms stay away. Anyone else have that issue? I have heard that they can become intollerant to a food that they eat too much of.

How many of you have dealt with or heard of fructose malabsorption along with Celiac Disease? After a year on the gluten free diet and many tests that revealed my son was healed and all levels were normal, etc., he was still experiencing regular nausea, excessive burping, and fuzzy or heavy head, and fatigue. After much of my own research, I came to see that fructose malabsorption may very well be the cause. We are experimenting with going off fructose and fructans to see if the symptoms go away and stay away. Just curious how many others have dealt with this????

I try to vary all his grains and I keep a very detailed food journal. I don't give him straight corn because that's difficult to digest. When he has corn in things, like sprite or gluten-free cornbread, etc., he doesn't seem to have problems with it.

I'm positive he is not sneaking food. He is extremely strict on himself and will avoid all possibilities of contamination. He is very afraid of getting gluten accidentally. We home school, so I know everything he eats.

What I mean by digestion issues is he will tell me his stomach is slightly upset and ask for Pepto or Tums. Sometimes that makes him feel better and sometimes it lingers until he goes to bed. There are nights he doesn't ask for anything, but he says he feels it most every night.

We have checked all those things. This week we're going to try switching his "dinner" meal to lunch and his lunch meal to dinner time. If he still has issues only at the same time of day, we may at least be able to say it's not the food. The only thing I do differently at dinner is make things with a bit more in them such as seasoning, vegetables, etc. I've checked and double checked all seasonings we regularly use. He generally likes his meals more on the bland side, so I don't go too far with seasonings.

I am a mother of a teen with Celiac, so I thought I'd get some teen feed back on this. My 15 year old son has been gluten free for ten months and dairy and soy free for five months. He says that every night after dinner, within an hour, he still has issues. Most of the time they are minor and he doesn't even ask for pepto or anything like that. Sometimes he takes Pepto to get it to go away. Any idea why he would still be having digestion issues and only after dinner most of the time? We are very, very strictly on the diet. Our whole house is gluten free and we NEVER eat out.

For those of you who live in Georgia, or a neighboring state, I thought you'd want to know about a week long kids' camp for children with Celiac Disease. It is hosted by Camp Twin Lakes Will-A-Way in Winder, Georgia. It will be May 30 - June 4, 2010. In January you should be able to go to their website to find 2010 info.

I went to a family camp for Celiac kids that was hosted by Camp Twin Lakes this past spring, and it was so awesome! The whole weekend was filled with fun activities and great food...all safe food specially chosen and prepared for kids with Celiac. There wasn't a single thing there they couldn't eat. Even though many kids with Celiac have other intolerances, such as dairy, soy, etc., they were more than willing to work with those issues, too. It was a lot of fun for the kids!! They will also have another family weekend camp this year, but the dates haven't been announced yet.

Last summer was the first time ever to have a camp that's a week long for Celiac kids here in Georgia, and they're hoping for an even bigger turnout this year.

Do any of your Celiac kids take Prevacid along with a gluten free diet?

Yes, since July he has been soy free, nut free, and dairy free along with his gluten free status. We're also currently avoiding potatoes and tomatoes. I'm at the point now where if we can ever go to just gluten free then we will absolutely celebrate!!!!!!!!!!!!!!! Going dairy free has been the hardest next to the gluten.

Pepto does work for him occasionally. I've got him taking digestive enzymes. I just took him off of the Culturelle probiotic (dairy free) because it seemed to get worse, the gassy symptoms.

Before he was diagnosed with Celiac, when we were still searching for answers, he was placed on Prevacid because the doctor thought he might have an ulcer and/or reflux. I thought recently that maybe he does have reflux but it makes him feel nauseas instead of pain or burning???? I put him back on Prevacid (still had some) for a three week trial. I write everything down every day, including what his bowel movements are like. We're on day 5 of the Prevacid, and he's also taking the digestive enzymes, and so far he has been symptom free. We'll see how long that lasts. I think the longest time he's ever gone during this whole eight months without complaining of something was about a week. If he goes the whole three weeks, maybe I have my answer??

You definitely might need to take her off the dairy. I've heard so many get other intolerances at least in the beginning. Sometimes they go away, and sometimes they don't. We may try the dairy again after the one year mark. He was tested for allergies and the GI said he didn't have any, so maybe the intolerances will go away at some point.

Yes, we totally took him off of all dairy as of end of July.

My son is 14 years old and has been gluten free for eight months. We've seen improvement and his doctor says he should definitely be healed by now. But he still has bouts of nausea and stomach discomfort. He belches a lot and they are long and deep ones. It's like he has a lot of gas build up or something. We keep a medicine log to see how often he takes something for stomach discomfort, and it's almost every day. He may have a "good" day or two but then he'll have an "off" day where he has to take Pepto or Tums or Zofran if it gets really bad. He's been tested twice to make sure he's not ingesting gluten accidentally and they both came back fine. He is on a strict diet which is gluten free, soy free, nut free, and dairy free. We've started taking Culturelle and digestive enzymes regularly.

Help!!! I don't know why he's not feeling better for longer periods of time....anyone else experience anything like this??

I know Trident, all varieties, are fine.

Definitely DO NOT get Altoids chewing gum (peppermint). It has wheat maltodextrin in it and is NOT GLUTEN FREE

I bought a tin of altoids chewing gum today because everywhere I had read it was gluten free. I almost gave it to my son with Celiac Disease! He read the label and one of the ingredients says wheat maltodextrin. Why do all the sites and my Celia's Handbook for gluten-free items say altoids chewing gum is gluten free??????

Okay, I just have to vent! My son was diagnosed with Celiac almost 6 months ago. In that six months we have had to cut out not only gluten but nuts, soy, and casein because he has been intolerant and has had continuing issues. Fortunately his ttg levels are great now, so no gluten is getting in. The last 6 weeks or so he's been regularly fatigued, with headaches and nausea. We had another huge round of blood tests run to check for vitamin deficiencies, allergies, etc. All came back normal except that his blood sugar was slightly elevated and his blood also showed he had mono at some point (without my knowledge). His doctor said it's a possibility he had it in June, which he did have a sore throat for about a week in June which turned into Laryngitis. So.....dealing with continued fatigue from mono, I guess, after dealing with regular fatigue from the Celiac, and I can't get enough calories in him because of all the diet restrictions, and he's an adolescent boy who needs the calories!!!! I just want my vibrant, energetic, happy child back!!!!!!!!!!!!!!!!!!!!!

I have been keep a food and feelings journal for my son with Celiac Disease. I notice on the days when he feels "off" or low energy or a little upset stomach is on the days when he has had a gluten free bread, all made with brown rice flour and tapioca flour or starch. Does anyone know of this happening or what could be causing it?

I've heard of the rice-based cheese, if it's called Galaxy. It comes in slices that are flavored "cheddar", "american", and something else. We haven't tried it yet, but would like to. Cheese was definitely the hardest thing to give up. He put cheese on everything and loves it. But his symptoms seem to be gone now after three days of no cheese, so he'd rather feel good.

One other question....how to get enough calories in him. He eats pretty well, but his total calorie intake at the end of the day hovers around 1,000 calories. He is 14 years old and needs more calories to put back on some of his weight and to give him energy. Any suggestions?

Can anyone tell me if sea-band anti-nausea ginger gum is gluten free? That is one thing my son uses all the time for nausea.

Thanks so much for the comments. We have been enjoying the ice cream made with coconut milk, a couple of different brands, for a while now. So when I decided to cut out soy and dairy completely I went and purchased some unsweetened coconut milk in a carton to use in baking. I made mashed potatoes with it tonight, and he really liked it. I'm sure he'd love to have a bowl of cereal again, so maybe that will be a good alternative to dairy and soy.

My son was diagnosed with Celiac in Feb of this year and has been on the gluten-free diet since. So he's about 5 months in and seemed to be recovering well after the first couple of months. We saw a big turnaround and he was only having occasional "bad" days. We took out dairy early on but left in cheddar cheese because we believed him to only be lactose intolerant (which he was not before the Celiac). For the last 4 weeks or so he has been battling headaches, diarrhea, and low energy off and on, and has also had cold-like symptoms at least once a month. I took him in for more tests for vitamin deficiencies, etc. We're waiting on results. But in looking at some posts, I think he may have a milk protein intolerance and possibly all this time the cheddar has caused these symptoms. Yesterday we decided to cut out the cheddar for the next couple of weeks and see. Any thoughts?

It's so frustrating and heartbreaking to watch your child improve finally and then to seemingly go backwards. Our whole family has gone gluten-free and we never eat out, so I know cross-contamination isn't an issue. Plus, in May his TTG levels were back to normal. He is still losing a little weight, too. Just want him to feel like himself again. He's getting very down.

Does anyone know about Mountain Dew Game fuel and if it's gluten free. Specifically, I am wondering about the ingredient glycerol ester of rosin, which is an emulsifier. Is this safe?? My son wants to try the World of Warcraft version of the game fuel and we need to know if it's gluten free. Can't find anything on their website.

I've read a lot that says Chick-fil-a has gluten-free waffle fries and hashbrowns. We'd love to get some feedback from those of you who have tried them and how it went. My son is newly diagnosed and afraid to chance it. But it sure would be nice to grab something out from time to time if we needed to.