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catherinep

Advice Needed On Moving To U.s With Celiac Child.

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Hello,

There is a chance that we will be relocating to the U.S (Texas) from the U.K, and I would be grateful for any information you could give me regarding coping with coeliac disease with a small child.

Our son, now 5, was diagnosed at the age of 18 months by blood test and, to date, has not undergone a biopsy. Here in the U.K we see a paediatrician and dietitian once a year for a general check-up and blood tests - this is all free under the National Health Service, and we also receive some gluten-free food free on prescription from the doctor. Could you please give me some advice on how coeliac care works in the U.S - would we need to register with a specialist? If so, how does one go about finding one?!

I'm assuming the free food isn't available in the U.S, so how readily available is gluten-free food in the supermarkets? In the UK, most supermarkets now have their own range of gluten-free foods so is there snything similar in the U.S? Here we are also able to buy 'fresh' gluten-free bread that does not require refreshing in the microwave, do you have anything similar?

Regarding schools, here our son takes a packed lunch (as do many other children who don't like school dinners!) so is that allowed in American schools, or do children have to eat school dinners? In general, how well do schools cope with coeliac children, and is there anything specific we should consider when trying to choose a school?

Thanks in advance for your help, and I hope you don't mind so many questions!

Regards,

Catherine.

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Texas is a great state! Each region is very different.

There are no celiac specialists here for most of us. In the US, celiac is considered a gastrointestinal disease. There are celiac centers in New York and Chicago. It would be up to you to find a savvy pediatrician in your area. Your best bet would be to call your local children's hospital. He would have to be covered by your insurance plan and nothing would be free most likely. No free food for us either sadly. The most you could do is get a tax break, which is pretty complicated.

If you live in or near a large city, gluten-free food is easier to find. If you live in a rural area, the internet would be your best friend. No gluten-free store brands and no fresh bread unless you happen to live in a few select large cities.

I think Europe generally has a leg up on us here in general regarding celiac and gluten-free foods.

Kids in school can pack there own lunch, but there can be issues with other school activities.

I hope this doesn't paint too dreary of a picture. I don't mean to, but things would be different.

Take care!

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First - good luck on your move.

Depending on where you are in TX (city vs. rural) will give you an idea of how easy or hard it will be to be gluten free. I'm from NY, but about an hour or so outside NYC...so it's probably pretty similar.

Regarding Dr's - my daughter sees a gastrointerologist. He happens to specialize in celiac, among other things. I found him through a recommendation, but he's a top dr one of the local children's hospitals (the only in the area, except NYC). Our insurance pays for part of the visits, we just pay for co-pays...which will depend on your insurance (don't get me started on the whole health insurance thing...I'm sure many parents will tell you about the hrs they spend fighting with insurance companies for testing for their kids). Best thing to do would have your child's records transfered over so they don't need to re-do testing.

As far as food goes, our local supermarkets carry some specific gluten free food. I would suggest getting a book called "Cecelia's Marketplace", which you can buy on line. It's been my bible. It basically lists almost everything you would buy in the supermarket and what brands are gluten free and which ones aren't. So if you are making meals, this is a life saver (i.e. salad dressing, tomato sauce, ice cream, etc..) As far as instant stuff, there is a limited amount at our local store, I travel about 1/2 hour to a health food store and stock up on frozen fish sticks, chicken nuggets, pizza, etc.. This can also be bought on-line. However, my best reference was other people in the area with celiac...they told me which restaurants have gluten-free menu's or will prepare something special, or a local deli that has a dedicated gluten-free slicer for gluten-free meats (he also sells frozen bread, desserts, etc..) So if you can find a support group in your area..it may be a lifesaver for you (and a great way to meet new people).

Good luck.

michele

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Texas is a big state so it depends where you're going what you'll find! But there are lots of resources -- the Celiac groups have lots of good info to share and are happy to share it. Since he's a child, I'd recommend finding a pediatric gastroenterologist if you need specific medical care related to his celiac diagnosis. All the big cities will have plenty of options in stores -- more and more, the mainstream stores have lots of options and the grocery chain HEB (which has a big presence in Texas) is going out of their way to start labeling lots of their store-brand products as Gluten Free with brown and white labels on the shelves. Plus there's always Whole Foods (which started in Texas so has a good presence here) and other specialty stores.

Schools aren't a problem -- packing lunch is totally normal. Birthday celebrations will involve kids bringing in cupcakes or brownies or cookies, but if you talk with the teacher ahead of time and know when those things are coming, it shouldn't be hard to provide your own treat for your child on those days. Same goes for elementary school holiday parties (which also often involve food) -- just work with the room moms to find out what the foods will be so you can plan accordingly.

Good luck with the move!

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