aaron&sam

Me too. I just started the Couch 2 5k program.

I realize too that this is based on an old post, but I love to run! Are there groups that run across the US in support of Celiac disease? If so count me in!

Me too. I just started the Couch 2 5k program.

I realize too that this is based on an old post, but I love to run! Are there groups that run across the US in support of Celiac disease? If so count me in!

We are going to Branson in August and was wondering if any of you had any gluten-free suggestions. We are staying at the Stillwaters Lakefront Resort and I know we are going to Silver Dollar City. I am also hoping to go on the Showboat Branson Belle.

Thanks for you help.

You will have some options at Silver Dollar City- I investigated that last year and do not remember specifics, but I do think that you can look on their website for some information on the food they provide!

This is what I think based on my personal experiences!

I would continue with your daughter's gluten-free diet! Her growth and development depend on her body's ability to absorb nutrients, if she happy, healthy and growing normally than you should not change anything! Maybe at another time in her life when growth and development are not so critical, you could investigate finding an official diagnosis!

My children have growth delay problems and I know that they would be sooooo much healthier if we had just known about Celiac disease about ten years ago!

Sounds neat. Can I buy one of these at, say, Wal-Mart or did you have to go to a specialty store for kitchen app

Sounds neat. Can I buy one of these at, say, Wal-Mart or did you have to go to a specialty store for kitchen appliances?

I bought mine at Wal-Mart!

We have one of these 2, but a different brand. Does poaching and hard boiled eggs. Also steams some canadian bacon to add to it. Grab a piece of fruit and you've got a complete breakfast in exactly 5 minutes!! (I timed it )

It really does help with putting together a quick breakfast!

Sorry if this has been posted before, but I wanted to share something that has helped us out!

My son really loved his poached egg and toast before being told he had Celiac disease. Well after many tries to make poached eggs with gluten-free bread, we finally found something to help us! Paula Deen has a toaster that also poaches the egg at the same time! It works great toasting the gluten free bread! I think what really helps is the timing of the bread toasting and the egg being ready! Anyway, it made it easier for my son to fix his own poached eggs!

-Sandra

Our insurance is also Cox, but since there is no local pediatric GI they approved us seeing Dr. Roberts. Even though he sees patients in the St. John's office, all the billing is done through Children's Mercy, which is in network. (The St. John's people schedule the appointments and provide the facility.) The only bad thing is if we need bloodwork done, we have to go to Cox or our primary care doctor's office (what we normally do).

Also, if Dr. Robert's has to do a procedure, it is done in the hospital in KC.

We did indeed see my son's blood levels drop, but it took about a year overall to get negative. The good thing is it has stayed negative. Along the way I would find this or that was not gluten-free and it is very discouraging, but hang in there and keep at it.

That sounds like things are going well for you guys! I can also see our GI Dr. in Joplin as an outreach office, the only thing is they didn't tell me that until I had made I don't know how many trips to KC! Frustating!!!

Our Endocrinologist does not come down here, so we always drive to KC to see her!

I gave my kids this yesterday and thay either broke out or got bad stomach aches. I researced the blogs and people claimed it was gluten free (original style). I contacted the company today and was told otherwise. For those that do not know be careful!

What about Kellogg's eggo syrup? I think the company says it is gluten free! Here is the web site- kelloggs.com!

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!

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?

I just need to vent. I have yet to find the substitute for subways bread and i am really craving it. I hear all my friends say i had subway last night and it was so good and blah blah. meanwhile i listening and thinking you do not need to get sick over a sandwich. But its hard you know? I am the only one in my family who has Celiac and is on the diet. So i have to smell the reg. pizzas and brownies. i know they have to eat too, but i get so sick to my stomach just smelling them and then i see the pizzas and i want that.

sorry for venting

Any advice would be greatly appreciated because I don't know anyone with celiac

I think the young adult people in the world who have a new diagnosis really have it tough! My teenagers have had to make big adjustments in their lives on top of being around peers that can eat normal food! I wish I could take it away from all of you! I know I spent hundreds of dollars searching for a bread that would make a good sandwich-did not find any and quickly gave up! I buy Kinninnick (not spelled right I am sure) and toast it for my children to have for breakfast!

My mother-in-law has helped a lot! She has worked to help me find food choices for my children! I will never forget the morning I gave them biscuits and gravy that were gluten free! I really cried that morning when sharing my story with the teachers I work with!

Hang it there! I know it can be tough in a world that revolves around living to eat instead of eating to live!

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!

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!

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!

When did Emilee go gluten-free?

~Laura

Emilee went gluten free in Nov. 2006. It is really hard to believe it has been that long, but it has! She has grown but just not enough! She has felt better and gained weight too!

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!

Test results - are you talking about Ttg blood test, or something else?

We are in Springfield, and my son sees Dr. Roberts at the Children's Specialty Clinic at St. Johns in Springfield when he comes here (2 days per month). We only had to go to CMH once for the initial endoscopy.

My son and daughter both tested positive through blood tests and biopsies in 2006. They have been on a gluten free diet. We repeat blood test looking for their Ttg levels to drop into a normal range. I am told that is how we will know we are doing a good job with their diets. My daughter's levels did drop from >100 to 41.7 normal range being less than 20. My son's first tests Ttg level was >250 we are currently waiting on his last set of blood test results! Are the Dr.s right will blood tests return to normal if gluten is out of their diets? I am very frustrated!

My insurance is through Cox not St.John's!

Lunch ideas continue to frustrate me as well! My teenage children get very tired of eating the same types of lunches everyday, usually leftovers from the night before. I would love ideas for lunch that are gluten free and good for teenage kids to eat!

Sandra,

Can you tell me about your daughter, her growth delay and her age? What are the doctor's doing? Or PM me. I'm not getting good answers and would appreciate any info that you could give me. Thank you!

~Laura

Emilee is 13 (14 in June ), she is 4'10" and is in 8th grade. The Dr. wants to start her on growth hormone therapy. We are trying to get the insurance to pay! We were hoping that through diet changes she would be begin to grow on her own, but really is not making gains quickly enough.

I use Authentic Foods Four Flour Blend! I order it online or I have to drive an hour away to buy it!

Just out of curiosity... who do you see? Our daughter is also under the care of a GI in Kansas City, at Children's Mercy. Of course, we live here... so it's no big deal to travel. I just wondered if two kids from the forum are seen by the same GI. (Ours is Dr. Li - and we've also seen Dr. Roberts at CMH)

They see Dr. Hodge at CMH. My parents live in Independence, so we usually stay with them when we have to go up there.

My daughter also sees Dr. Jacobson for growth delay at CMH, she is actually the reason we discovered Celiac disease.

We just got our latest test results back, and they are still picking up traces of gluten, which is why we need help from a dietitian. I guess I thought we could do it without one!

Just wanted to know if anyone has seen Dr. Suzanne Lewis, an associate of Peter Green? I am going in May for my official diagnosis after all my tests are completed and it is not covered under my insurance. I wanted to be sure that it was worth it to pay outright and go through the hassle with my insurance to get partial reimbursement and have to pay a big deductible. Another question I have is would an insurance company waive the fees and pay for the visit since there are no GI doctors that specialize in Celiac disease except for this center. I went to a regular GI doctor and was not thrilled. He didnt seem to know much about celiac disease and didnt seem so interested. Doctors really need to be trained and insurances need to provide better coverage for people with this disease. Sorry I went so off track but if you have any feedback, please write to me!

Our insurance company has been a constant source of frustration. Unfortunately, we learned the hard way how costly test can become when seeing a specialist. Our children see a specialist in Kansas City, Mo. about three hours from home. I have to have every appointment pre-approved including follow up appointments. There is not a GI specialist in our area that will see anyone under the age of 18. Our insurance will cover the out of network as in network if the paper work is in order. That means that I have to start weeks ahead of time getting approval. The cost of the biopsy, lab work, and physician care was over $4,000. The majority of the cost came from the biopsy. I don't feel that the GI doctor has really helped us over the last year, other than the diagnosis! We are currently looking for help through a registered dietitian.

Good luck I know finding a good Dr. can be a challenge!