Help!

[aaron&sam]

I am a new member to the forum, although over the last year I have read many postings! I am not sure why I didn't join earlier? I love the help and support that everyone provides each other.

I have three kids, two have tested positive for celiac disease. We have been working on a gluten free diet for over a year now. I can confidently say that we have removed all major sources of gluten. With that being said, my daughters latest blood tests revealed that some gluten is still in her diet (we are waiting on my sons results). I am guessing cross contamination and hidden ingredients. I am cleaning out cabinets and throwing out anything that could be contaminated. Anyone have ideas of what could be a problem for us? Neither one of my children get really sick from anything they eat! They have suffered from growth delay problems. Could her body just be very sensitive to any amount of gluten?

My daughter is 13 and very good at reading labels and calling companies. She takes her diet very seriously and was really hurt by her test results!

I pack my children's lunches everyday, so I know that it is not happening at school!

[RiceGuy]

Well, first I want to commend both you and your child's efforts. The first thing that comes to mind for CC is the school cafeteria. When other kids are eating nearby, some crumbs may get tossed on or in her food. Also the table itself might not be particularly clean, and if the cleaners being used have gluten in them, then that would present a problem. Which reminds me, since you hadn't mentioned skin/hair care products, I'll bring that up just in case. I suppose depending on what the other kids at school are eating, there might be gluten being wafted up into the air, I hope that's not happening!

Also, some products which are labeled gluten-free actually do contain some gluten, such as certain Rice Dream products. How about pots and pans, utensils, etc? If you have any non-stick pans, cast iron pans, wooden spoons, toasters, and anything else from the "days of gluten" on which gluten can get stuck in tiny crevices, the advice is usually to replace them. Smooth stainless steel can usually be cleaned as long as there aren't nooks and crannies, scratches, etc for gluten to hide in.

last but not least, it is entirely possible for your child to be extremely sensitive, so less likely sources of CC may indeed be culprits. I truly hope that's not the case, as it can be very difficult to avoid such things.

[OBXMom]

I am so sorry you had this result, to do so much, and find it may not be enough. We will be doing a follow up blood test for my son in a month or so and I am already nervous about it. Another thing to check is medications. I was shocked to find that there was gluten in tums. Pre-diagnosis, every time my little guy complained, I gave him one. There are unfortunately just so many other ways gluten can get around. My son was invited to a pizza party, so of course I sent a substitute for him. When I arrived to pick him up I found his dinner plate on a table covered with flour, with balls of dough to play with everywhere. Yikes! I hope you are able to get to the bottom of your issue quickly, and tell your 13 year old for me that I am impressed by her dedication (and planning to use her for an example if my 12 year old's diagnosis comes back positive.)

[aaron&sam]

Well, first I want to commend both you and your child's efforts. The first thing that comes to mind for CC is the school cafeteria. When other kids are eating nearby, some crumbs may get tossed on or in her food. Also the table itself might not be particularly clean, and if the cleaners being used have gluten in them, then that would present a problem. Which reminds me, since you hadn't mentioned skin/hair care products, I'll bring that up just in case. I suppose depending on what the other kids at school are eating, there might be gluten being wafted up into the air, I hope that's not happening!

Also, some products which are labeled gluten-free actually do contain some gluten, such as certain Rice Dream products. How about pots and pans, utensils, etc? If you have any non-stick pans, cast iron pans, wooden spoons, toasters, and anything else from the "days of gluten" on which gluten can get stuck in tiny crevices, the advice is usually to replace them. Smooth stainless steel can usually be cleaned as long as there aren't nooks and crannies, scratches, etc for gluten to hide in.

last but not least, it is entirely possible for your child to be extremely sensitive, so less likely sources of CC may indeed be culprits. I truly hope that's not the case, as it can be very difficult to avoid such things.

As I was reading this message something came to mind! What about the microwave. The food I send sometimes needs heated in the microwave. Could CC happen just by sharing the microwave? I always put their food in containers. I don't know what to do about the school microwave, all students can use it? I am going to change the utensils, including the can opener!

[aaron&sam]

I am so sorry you had this result, to do so much, and find it may not be enough. We will be doing a follow up blood test for my son in a month or so and I am already nervous about it. Another thing to check is medications. I was shocked to find that there was gluten in tums. Pre-diagnosis, every time my little guy complained, I gave him one. There are unfortunately just so many other ways gluten can get around. My son was invited to a pizza party, so of course I sent a substitute for him. When I arrived to pick him up I found his dinner plate on a table covered with flour, with balls of dough to play with everywhere. Yikes! I hope you are able to get to the bottom of your issue quickly, and tell your 13 year old for me that I am impressed by her dedication (and planning to use her for an example if my 12 year old's diagnosis comes back positive.)

I told a friend we had to take it to the next level, whatever that means! I am going to double check make-up and toothpaste. We try not to get too down and realize God will not give us more than when can handle, but sometimes I get really upset that my kids have to go through these challenges. My son is trying to figure out where he can eat out with his date for prom. He is a Junior in HS and prom is a big deal. I have started contacting restaurants in our area! I am also scared for him to go to college next year. He has not been as easy as my daughter!

[home-based-mom]

I told a friend we had to take it to the next level, whatever that means! I am going to double check make-up and toothpaste. We try not to get too down and realize God will not give us more than when can handle, but sometimes I get really upset that my kids have to go through these challenges. My son is trying to figure out where he can eat out with his date for prom. He is a Junior in HS and prom is a big deal. I have started contacting restaurants in our area! I am also scared for him to go to college next year. He has not been as easy as my daughter!

Search the forum for posts on restaurants and on being a college student. A lost of really useful information has been shared.

[CeliacMom2008]

What about Red Lobster or a steak restaurant? Or what would he think about a fancy meal at home prepared by you? Could you give him and his date the house alone for an hour? (I don't know if that is even a consideration these days, I'm just tossing out "out of the box" ideas.) My son is 8 and I've already been fretting about the dating scene. As if I don't have enough to worry about!

Good luck on that one!

As for the glutening, I can offer no advice. We are still struggling ourselves. I think I've done everything right and my son still has stomach issues (although not severe at all). Then we went to Disney for a week and he was completely normal. 15 hours and one meal back at home and his "issues" were back. We haven't done the follow up blood test yet, but I suspect they'd come back high if we did it now.

[aaron&sam]

What about Red Lobster or a steak restaurant? Or what would he think about a fancy meal at home prepared by you? Could you give him and his date the house alone for an hour? (I don't know if that is even a consideration these days, I'm just tossing out "out of the box" ideas.) My son is 8 and I've already been fretting about the dating scene. As if I don't have enough to worry about!

Good luck on that one!

As for the glutening, I can offer no advice. We are still struggling ourselves. I think I've done everything right and my son still has stomach issues (although not severe at all). Then we went to Disney for a week and he was completely normal. 15 hours and one meal back at home and his "issues" were back. We haven't done the follow up blood test yet, but I suspect they'd come back high if we did it now.

Thanks for the advice! We are calling and emailing places in the city where prom is being held.

I have been working through the postings and beginning to see how hard it really is to find all the hidden gluten! I worked many hours yesterday cleaning out cabinets in the kitchen, and throwing out food! We only have one cabinet that has gluten containing snack foods for my other son and husband. I prepare all meals gluten free! I can't figure it out! We also went to Disney last year, we had such a great time! Everyone was helpful when it came to eating!

[RiceGuy]

As I was reading this message something came to mind! What about the microwave. The food I send sometimes needs heated in the microwave. Could CC happen just by sharing the microwave? I always put their food in containers. I don't know what to do about the school microwave, all students can use it? I am going to change the utensils, including the can opener!

Yes, the microwave is a possible source of CC. I'm not sure if it can be prevented. Even with a sealed container, gluten could get on the outside of the container, and it still has to be handled afterward. A microwave also has a fan blowing air around, so that adds to the problem.

[tarnalberry]

If you read the threads about schools, perhaps school isn't actually off the hit list. If there are communal eating locations, it could be a prime area for cross contamination. (I'll assume that trades and cheating aren't in anyway possible. )

[HAK1031]

As for prom, I'm also a high school junior, and I am just choosing not to eat there or bring my own food. It's just not worth it to be sick on prom night!! Dinner is provided at our prom, but I just don't want to go there if I don't have to. There's another girl with celiac in my limo who's doing the same.

As for college, all of the colleges I have looked at have had excellent gluten-free options, as per the students who need them. I have seen Gillian's pizza dough, glutino cereal, you name it. If worst comes to worst, your son can always have a microwave and a hot plate in his room.

[okgrace]

Hi aaron&sam,

I am certainly not an expert as I am new to this myself, but my understanding about the blood test was that it could take quite sometime for the numbers to come down even on the diet. I know we have been doing this for a few months and the doc wanted to test my dh's numbers again and they had only come down about 10 points. Which means she is still way up there. 83 with normal being 19!. I am now realizing how serious cc is. Have there been incidents when your dh was accidently glutened. I know we have had a run in with that and I am sure it doesn't help the numbers.

I can imagine it is important to your dh that her numbers are good and how impressive she is so proactive. Perhaps the important thing right now is that she is hopefully feeling much better and doing the best she can. Thats what I would focus on. I hope she doesn't get to discouraged.

Good luck to all of you, especially at prom!

[aaron&sam]

Hi aaron&sam,

I am certainly not an expert as I am new to this myself, but my understanding about the blood test was that it could take quite sometime for the numbers to come down even on the diet. I know we have been doing this for a few months and the doc wanted to test my dh's numbers again and they had only come down about 10 points. Which means she is still way up there. 83 with normal being 19!. I am now realizing how serious cc is. Have there been incidents when your dh was accidently glutened. I know we have had a run in with that and I am sure it doesn't help the numbers.

I can imagine it is important to your dh that her numbers are good and how impressive she is so proactive. Perhaps the important thing right now is that she is hopefully feeling much better and doing the best she can. Thats what I would focus on. I hope she doesn't get to discouraged.

Good luck to all of you, especially at prom!

My husband tends to think that things are moving in the right direction, I tend to get frustrated with what we a missing, as I am the one that mostly deals with what our children eat! I know that my children do not get violently ill, like I am reading with so many that post comments about violent stomach problems. That makes finding gluten contamination difficult! I now have an appointment with a registered dietitian on Friday! I will let you know what I find out!

What are your daughter's symptoms?

[aaron&sam]

As for prom, I'm also a high school junior, and I am just choosing not to eat there or bring my own food. It's just not worth it to be sick on prom night!! Dinner is provided at our prom, but I just don't want to go there if I don't have to. There's another girl with celiac in my limo who's doing the same.

As for college, all of the colleges I have looked at have had excellent gluten-free options, as per the students who need them. I have seen Gillian's pizza dough, glutino cereal, you name it. If worst comes to worst, your son can always have a microwave and a hot plate in his room.

I am so glad you have a friend that also has Celiac! I would think the support you give each other would be great!

I haven't even started with college issues- My son is not highly motivated when it comes to fixing meals! Usually my daughter fixes his food if I am not home! Thankfully his prom date is very supportive of his diet needs!

[okgrace]

Hi Aaron&Sam,

My daughters is four and her symptoms when glutened tend to be a big bm very soon after eating. It can also be after eating sugar or someting with food coloring. She becomes super moody and generally miserable or she can become almost manic, laughing hysterically and moving at the speed of light. She was seriously glutened several weeks ago and had a difficult time making it to the potty for several weeks. Fortunately this seems to be clearing up.

It's difficult when one parent does most of the food prep because they become more knowledgeable and then it's difficult for them to grasp the situation when further changes to the diet need to be made. I am going through this right now with my hubby. He wants to be supportive, but he also wants dairy in his life and as the other official celiac in the house my daughter looks to him for sameness (something very important to a four year old). So it would be difficult for him to continue with dairy and for her not have any. She is begining to feel frustrated with the diet and tells me all the time she wants to eat like other kids.

The food intolerance thing is always a work in progress I guess. Take Care!