Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):
  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

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


catherinep

Recommended Posts

catherinep Newbie

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



TrillumHunter Enthusiast

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!

Benshell Explorer

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

MartialArtist Apprentice

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!

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      results from 13 day gluten challenge - does this mean I can't have celiac?

    2. - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      results from 13 day gluten challenge - does this mean I can't have celiac?

    3. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      results from 13 day gluten challenge - does this mean I can't have celiac?

    4. - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      results from 13 day gluten challenge - does this mean I can't have celiac?

    5. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      results from 13 day gluten challenge - does this mean I can't have celiac?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,368
    • Most Online (within 30 mins)
      7,748

    Helen1984
    Newest Member
    Helen1984
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • catnapt
      so do you have celiac or not? 🤔 why are your vision issues undiagnosed? 😢 what does your ophthalmologist say?  do you have a serious vit A deficiency? what do you take for it? how long have you had celiac disease and how long did  it take to get a diagnosis?   if you are legally blind there are adaptive devices that will help you. I have vision difficulties as well but did not qualify (at least not yet)   do you have a vit A deficiency? why are you undiagnosed? what does your ophthalmologist say? I have a retinal specialist and he tells me my eye condition can not be fixed- until/unless it gets to the point of where surgery is safer since the surgery can leave me actually blind... so you want to wait til it gets really bad 🤪     I hope you find what works for you.    PS   the medication I started at the same time as the gluten challenge is obvious from the condition it's trying to treat. you can google it 😉 it is not an for any auto immune condition.   
    • knitty kitty
      @catnapt,  I apologize.  Obviously I've confused you with someone else.  I have vision problems due to undiagnosed Celiac complications.  Being legally blind, y'all look the same from here.   You still have not said which new medication you started taking.  Parathyroid disorders can affect antibody production.  Bone Loss Correlated with Parathyroid Hormone Levels in Adult Celiac Patients https://pubmed.ncbi.nlm.nih.gov/36619734/ Effect of vitamin B1 supplementation on bone turnover markers in adults: an exploratory single-arm pilot study https://pmc.ncbi.nlm.nih.gov/articles/PMC12075007/
    • catnapt
      during the gluten challenge I did not consume any wheat germ   the wheat germ is TOASTED - it's the only way it is sold now afiak doesn't matter I consume vast amounts of lectin containing foods PROPERLY prepared and have for well over a decade. They do not bother me in the least.    no anemia however the endo who ordered the celiac panel is the one who suggested the 2 week gluten challenge of eating at least 2 slices of bread per day or a serving of pasta- ALSO put me on a new drug at the same time (not a good idea)  I ate 4 slices because they were thin, or 2 English muffins, and just once some lasagna that someone else made since I stopped eating wheat pasta years ago. The English muffins caused some of the worst symptoms but that pc of lasagna almost killed me ( not literally but the pain was extreme) during those 12 days there were at least 3 times I considered going to Urgent Care.   This entire process was a waste of time TBH due to being on that new drug at the exact same time. it is impossible to tell if the drug I am taking for the possible renal calcium leak is working or not- given the dramatic response to the gluten challenge and resulting nausea (no vomiting) and eventually a loss of appetite and lower intake of foods so now I have a dangerously low potassium level   I don't have a simple case of celiac or no- I have an extremely complicated case with multiple variables I am seeing an endocrinologist for a problem with the calcium sensing glands - that system is very complicated and she has been unable to give me a firm diagnosis after many tests with confusing and often alarming results. She also appears to be inexperienced and unsure of herself. but I don't have the luxury of finding a new endo due to multiple issues of insurance, lack of drs in my area, money and transportation. so I'm stuck with her At least she hasn't given up    in any case I can assure you that lectins are not and never were the problem. I know they are a favorite villain in some circles to point to, but I have ZERO symptoms from my NORMAL diet which DOES NOT contain gluten. The longer I went without bread or foods with wheat like raisin bran cereal, the better I have felt. my body had been telling me for several years that wheat was the problem- or maybe specifically gluten, that remains to be seen- and stopping eating it was the best thing I could have done   I almost had unnecessary MAJOR SURGERY due to joint pain that I ONLY have if I am eating bread or related products I assumed it was the refined grains - never really suspected gluten but it does not matter I won't put that poison in my body ever again not that it is literally poison but it is def toxic to me        
    • knitty kitty
      @catnapt,  I'm sorry you're having such a rough time.   How much wheat germ and how much gluten were you eating? Lectins in beans can be broken down by pressure cooking them.  Do you pressure cook your beans?  Were you pressure cooking your wheat germ? What drugs are you taking?  Some immunosuppressive drugs affect IgA production.  Do you have anemia?
    • catnapt
      oops my gluten challenge was only 12 days It started Jan 21s and ended Feb 1st   worst 12 days of my life   Does not help that I also started on a thiazide-like drug for rule in/out renal calcium leak at the exact same time No clue if that could have been symptoms worse 🤔
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.