AGH2010

Hi all,

We will be flying in from California with my 3 year old daughter, who has celiac. We will be landing in Newark around 7pm and am planning on making a trip to Whole Foods to stock up for our week in the Poconos. A real meal after spending the day on the plane and at the airport would be great. Wondering if anyone has experience with any restaurants near the Newark airport. I'm very unfamiliar with the area.

Thanks!

Thanks so much for your reply!  I just looked up the cafe you mentioned -- it says it's over 40 minutes away from where we will be!  I didn't realize the Poconos area was that large.  (Excuse my ignorance).  We're going to be in Dingmans Ferry, which I understand is a very small, desolate town.  Any chance you might know of anything closer to that area?  It's near Milford, PA.

I'm really looking forward to our vacation. I'm glad you have so much positive things to say about the area. 

awwh - it's so pretty up there  i used to live right at the bottom of high point mountain in nj, i could throw a rock over the ny state line and the pa state line lolz - there is a nice (used to be free) beach in milford that i used to take my kids to back in the day.  they had a nice picnic area and everything.  we used to go tubing - i believe they still offer that in matamoras where they drop you off and you float back to where your car is.  also, canoeing is so fun if that's something you like.   i will be going up there next month to nj (sparta and oak ridge) to stay with my 'homies'  but usually take a ride up through there just for giggles.

 

anyways, you are in luck!  google mama's baci cafe in hackettstown - the food is FABULOUS the people are awesome and all their servers/cooks, etc are trained and certified (they take a course at the hackettstown hospital)  they have probably the biggest gluten free menu i have ever seen in that area and they can also accommodate other allergies like dairy i'm pretty sure.  when i go up there (or when anyone visits me down here) a visit to mama's is a must!!  their cheesesteaks are primo, and they also sell jars of sauce, pasta, etc if you wanted a lazy night dinner out of a jar.  and they also have pizza  

Hi everyone,

We will be spending a week at a lake house in the Poconos later this summer with my 3 year old, who has celiac.  It will be our first time in the area.  I wondered if anyone had any store or restaurant suggestions anywhere in the area.  We are flying into Newark, and I was planning on stopping by a Whole Foods in NJ to pick up supplies on our drive up to the lake.  But I would love any insight other travelers who are more familiar with the area might have.  I haven't been able to find much online other than a pizza place in Milford, PA.

Thank you!!!

Hi all,

I'm hosting my daughter's 3 year old birthday party from 10a to noon in a few weeks and was hoping for some food suggestions. It's the first party I'm hosting since her celiac diagnosis. There will be about 15 kids and 25 adults.

So far, I've thought of doing a fruit salad and a make-your-own-granola bar w yogurt, granola and a few berries. I was also going to bake some blueberry muffins.

I'd appreciate any other ideas you all might have. Thanks very much in advance!

Our GI, a celiac expert, said constipation takes the longest to go away on a gluten-free diet, up to 6 mos at least. It's been 5 mos for us and whenever I try to decrease my daughter's Miralax, her constipation returns. Our GI also said that her constipation could be unrelated to her celiac. Not very encouraging for us. But wanted you not to worry if you haven't seen any changes in that department after 8 days.

Do you mind me asking which doctor you take your children to? I've tried 3 pediatric GI's in the LA area and haven't found anyone who seems particularly knowledgable about celiac. As a result I've been taking my daughter to see a pediatric celiac expert in San Diego but would obviously love to find someone closer.

As to the original post, I'm constantly worrying about my child's poop too. For awhile her poop was very pale and I had read that it was a bad sign but her GI always responds that color doesn't matter. Not sure how much I buy it.

I see Dr. Harmon, GI/Celiac researcher and Nancee Jaffe, Registered Dietician at UCLA's Celiac Center. Poop shouldn't float. It floats due to malabsorption of fats. It is important to absorb fats. As the gut heals, usually fat malabsorption subsides and poop will start sinking .

(One of my twin's poops floated. We are at 9 months gluten free and her poop now sinks. Other than going gluten-free, we didn't do anything--she just healed on her own.)

I have Celiac and my poop floats. I have been advised to take an ADEK to help with fat absorption. A REALLY good dietician will be helpful.

In the meantime, please tell your husband I never tested positive on my TTG but had a positive Celiac biopsy (and did a colonoscopy at the same time with a whopper: they removed a Sessile Serated Adenoma...probably saved my life). There is likely some reason his poop is floating. A great GI will dig deeper, so to speak.

That's very interesting about the vaccine. But requiring a formal diagnosis would keep people like my daughter from getting it. She's not yet 3 and her bloodwork came back positive. Her biopsy was negative. A celiac expert in San Diego told us that 2/3 of kids with positive blood work will develop celiac within 2 years if they keep eating gluten. She recommended we get my daughter on a strict gluten-free diet if we wanted to play it safe. So we did. I'd hope that a vaccine would still be available to those whose biopsies are negative but have had positive antibodies to gluten... In any event, how wonderful it would be if they could find an effective vaccine. An absolute dream come true!!

Thank you all for the great ideas! Really appreciate it.

Hi everyone,

My daughter's class is having a hot chocolate party on Tues and the parents have been asked to bring finger foods. I'm not much of a baker but wanted to make something gluten-free that would be tempting enough for my daughter so that she wouldn't notice all the gluten-y baked goods.

I'd love any and all suggestions! Thank you!!

Sorry I don't have any suggestions but wanted to say my daughter has been gluten-free for 5 mos now and also takes laxatives (milk of magnesia in our case) and still only has a bowel movement once every 2-3 days. I was really hoping going gluten-free would help w her constipation but it doesn't seem to have made a difference at all. And like your son, she's a very picky eater. I feel your frustration!!

Thanks for all the replies, everyone! Happy to report that yesterday went very well. But it probably really helped that all the other kids got mini cupcakes and she got a regular size one -- so if anything, she lucked out. My friend was very thoughtful and used that big cupcake along with two smaller ones as the cake that the birthday boy blew out so that my daughter felt like her cake was just like the others. Oh, and I had packed some pink sprinkles that my daughter loves and she really enjoyed adding that to her cupcake.

We have one more birthday party to go this weekend and two more in mid-Dec. And then all those holiday parties. Hopefully I'll feel better once we've conquered the Christmas season.

I really like the party box idea! I could put her sprinkles jar in it and a few other things to distract her when others are eating their cake. Thanks!

PS: I know that in the grand scheme of things, her not eating the same cake is a minor issue. But it still annoyed me when my friends told me to relax and pointed out that she was fine. It's easy to say when it's not your own kid who is affected!

This may seem silly but I'm feeling very anxious because we're going to a close friend's last minute birthday celebration. It will be the first time my almost 3 year old confronts eating different cake from her friends. I had time to run over to the store and get a ready made gluten-free cupcake. And luckily I have frosting left over from a cake I made for Thanksgiving. Hopefully she won't mind that her cupcake looks different. I tried mentioning beforehand but it backfired, she told me she wanted a cupcake just like the birthday boy's. I'm hoping once she's in the moment she'll be happy enough w hers.

I'm sort for rambling. Just felt like the only people who might be able to relate to my anxiety would be you all. I know this will be the first of many birthday parties. And I can't help but feel sad for my daughter. But I will try to stay positive for her sake!

Thanks for listening...

Still waiting for one to open in LA! (I'm not counting the raw food restaurants because we're on the gluten-free diet for my 2 year old daughter's sake so those raw food places won't cut it). We go to the gluten-free bakery about once a week for fresh bread and cupcakes. Wish they'd sell sandwiches too.

Thanks, everyone. That list is very helpful. I feel silly for not having googled before posting my question. I thought I had read that candy canes were usually off-limits in the early days when I was reading up on celiac and never bothered to follow up - just assumed the worst. I'm so happy that there will most likely be tons of variety from which to pick. Yay! And to those of you brave enough to make your own, definitely sounds like a fun project. I may even try it. But knowing my skills, the homemade variety may not do very well against the commercial brands in terms of appearances. Thanks again, all!

Hi everyone! This will be my daughter's first Christmas on the gluten-free diet and she's already talking about candy canes. I know most are off limits. I was wondering though of people had experiences from years' past - will I be able to find gluten-free candy canes in places like Whole Foods or health stores? Or do I need to plan ahead and order some?

This is all assuming they make gluten-free candy canes. If not, my daughter will be devastated. (Being only a toddler makes it extra hard to exercise self control).

Thanks!

Thank you SO much for your response. I'm so much less anxious about the trip now. We're in LA so I'm already familiar w PF Changs and BJ - glad to know they are up there too. We are hoping to make a short trip to Tahoe too do thanks for that.

Now I can limit my worrying to how dismissive my mother-in-law will be about my daughter's new diet.

Thanks again!

Hi there! I got excited when I saw the word Sacramento on the subject line. We will be spending a week up there for the holidays, visiting my in-laws. It is our first trip there since my 2.5 year old's diagnosis. If you wouldn't mind me asking, do you have other restaurant recommendations in the area? I'll be scouring the Internet before our trip but thought I'd seize on this opportunity and ask a native. Thanks in advance!!

When I met with the nutritionist when we were first diagnosed, she said to start out with "common sense" (no gluten ingredients, new toaster, etc.) and see how it goes. If the symptoms and antibodies are still high, go to the "next level" (no eating out unless it is specifically gluten-free, no "processed in a factory with wheat", etc.) The final level was just to be 100% grain free. Her advice was to be as strict as you need to be to keep the antibodies at normal levels. We happen to be pretty sensitive, so we are very strict. If we were not, I would certainly allow those foods.

Cara

Thanks for sharing your nutririonist's advice. Makes a lot of sense. We haven't had our first follow-up antibodies test yet, and while I try to be very careful about what my daughter eats, I have no idea if I'm being strict enough. Your advice makes me feel better about waiting to see if our common-sense approach might enough before I drive myself crazy with worry.

We just got back from our first trip to a hotel with my 2 year old. Asked the hotel for a microwave, which they provided, and they also agreed to freeze a few items for us. It was a drag having to ask them to retrieve it and put it back each time but better than nothing! Good luck.

Wanted to share what we learned from our 2nd opinion with a pediatric celiac expert. My 2.5 yo tested positive on EMA and ttg igg but biopsy was negative. Our original dr thought it meant no celiac and celebrated. The celiac expert said the official term for her was "potential celiac". Gave me a few studies that show that 1/3 of potential celiacs will go on to develop celiac if kept on gluten. The studies also show however that not all potential celiacs will develop but there's still no way of knowing who can tolerate having the antibodies without ever developing the intestinal damage. Our dr said that in kids the number of antibodies can actually go up and down on its own, even while on a gluten containing diet.

Nonetheless her recommendation was that we go gluten-free and we whole-heartedly agreed. Have been gluten-free for 2 mos. Her only symptom was constipation and she's been taking Milk of Magnesia since May so it's hard to tell a difference. The dr said constipation takes the longest to improve from her experience.

I feel better knowing that we're minimizing her chances of developing all the other issues that go with celiac by eliminating gluten, even though it's not an easy diet to keep outside the house.

Thanks for the tip! We're higher up north in Santa Monica but it's always good to know of places in the vicinity for when we find ourselves down there.

I just wanted to assure you that your emotions are totally normal. We first got our daughter's bloodwork back in May and learned about celiac. She was asymptomatic for the most part (figured her constipation was typical toddler constipation like most doctors assured us). We didn't have her scoped until a few weeks ago, so didn't start our gluten-free adventure until recently, but all summer I've been on a roller coaster of emotions. Just like you describe, I was crying at the drop of hat, at everything and anything. It's hard for others to understand because they figure there is so much gluten-free out there that it can't be that difficult to adapt. But it's not their kid who has to feel deprived and who will be tempted when they see their friends eating foods they like. Even my husband has not been as saddened by the diagnosis as I have. He thinks it will teach her self-discipline in the long run. But she's only 2.5! And she starts preschool next week. And my heart already breaks for how tempted she will be during snack time.

But as you say, it could be much worse and I guess that's what we have to remind ourselves every time we get sad.

Big hugs to you. Hopefully it will get easier for all of us.

the gluten lite started with the occasional doughnut, but as he had not symptoms and going total gluten free made no difference to how he felt. He had a biopsy done 2 years later and it was negative. After that he gradually ate more and more gluten. It was probably 6 years between initial blood test and developing symptoms. The GI docs and everyone else was convinced that he did not have to be gluten free. He found being gluten free as a teen in high school much more difficult than in elementary or middle school.

Thank you for sharing your story. I wonder why so many doctors accept a normal biopsy as meaning you're free to eat as much gluten as you like when the bloodwork shows a different story.

Our 2.5 yo was scoped 2 weeks ago. I was so nervous. But it went by so quickly and effortlessly. She never complained of any pain or soreness at all.

As far as celiac, you'll have to wait on the biopsy but our doctor did mention that overall things looked good so I think they can report on the general state.

Good luck! Hope it goes as smoothly as possible for you.

I have one son that tested positive for IgG when he was tested at the time of his brothers diagnosis. We did not make him go gluten free at that point. I kept him gluten lite which gradually lapsed. In that time period his asthma and his allergies got worse and he has now 6 years later developed Celiac. I would adopt a slow transition and see what happens.

I'm really curious about kids who tested positive but with normal biopsies who do not go gluten-free because my 2.5 yo just tested positive on igg and ema but normal biopsy. When you say gluten lite, how lite do you mean?

I'm sorry to hear that your son eventually got celiac. I can't help but think it would be inevitable for my daughter, which is why we've gone gluten-free. But my dr said she'd be fine having an occasional slice of birthday cake, so that's why I'm asking how little gluten he consumed before getting celiac. Im not sure I believe her!