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

How Do You Start Going Gluten-free?


mairin

Recommended Posts

mairin Apprentice

Hello everyone

We just received my 9-year-old daughter's biopsy results today. They are positive. She has had two positive blood tests (last one in November) and we finally had the biopsy last Thursday. She is mostly asymptomatic, except behavior.

I've been reading for several months now, have purchased a couple of books (the Raising Kids one) but suddenly have no idea how to start. I thought I was well-informed and would be able to take the diagnosis in stride, but I'm feeling overwhelmed now. We will get an appointment with a dietician but not sure when. I rather not wait but would like to go into the consultation armed with informed questions.

Do we immediately go gluten-free without the dietician's guidance? I do make lots of meals (especially dinner) that are naturally gluten-free but of course planned pasta tonight. Felt badly as I had nothing alternative planned for her. Pizza lunch at school is Friday -- should I say this is the last time? Does that mean I'm wishy washy about the gluten in her eyes though?

I know that there have been other posts like this and someone has a newbie guide, but thought I would post first, while I go through previous posts once my kids are in bed.

And Canadians, is it worth it for income tax purposes to keep track of the gluten-free food receipts if only one person is celiac?

Thanks for any assistance and guidance.

Mairin's mom


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



Celiac.com Sponsor (A8-M):



wowzer Community Regular

If your daughter's results are positive, you should start gluten free immediately. This site has a lot of information to get you started. Why wait to see the dietician?

momandgirls Enthusiast

We've all been where you are. My daughter isn't much older than yours, diagnosed a year ago and I remember feeling exactly like you - totally overwhelmed even though I knew the possibility was pretty high that she'd be positive for Celiac. The best way to start is just to start. Like you, most of what I made was naturally gluten free and that was a big help. We went to different stores and bought various cereal and pasta and things like that. Over time, as we bought different brands, she's been able to find her favorites. You'll need to do a bit of work in the kitchen - getting rid of certain items and buying new things. She'll need a new toaster. Also, anything that's made of wood will need to be replaced for her (cutting board, etc.). We ended up buying a bread machine as my daughter never found a bread that she deemed acceptable. She loves the homemade bread now and can eat 1/2 loaf at one sitting! We also had an appointment with the dietitian but, frankly, I never found it helpful. If you want to let us know where you're from, there's probably someone who can tell if there's a support group. I've found them to be very helpful. Lots of us will be happy to let you know our kids favorite items, cookie recipes and lunch ideas if you want. I know it's overwhelming...feel free to ask any questions.

CarlaB Enthusiast

I buy my daughter things she wants to pack in her lunch. Since she tells me what she wants, she likes what she packs.

When the rest of the family orders pizza, she and I doctor up a gluten-free frozen pizza. I use Tinkyada Pasta for the whole family ... it actually cooks up better than regular pasta and is made from rice.

Start her now. If you make a big deal about it being her "last" time eating something, it will be a MUCH bigger deal.

You can literally duplicate everything she's eating now. Make a big deal about finding things she likes rather than having "one last try" of everything.

Don't wait for the dietician. From what I've heard around here, they don't always know a lot about it. You will learn more here, just keep reading and asking questions!

happygirl Collaborator

Check out the book listed in my signature. It will encourage you to stick to the diet 100%. You can't be wishy-washy.

Tinkyada makes a wonderful rice-based pasta that you can use just like any pasta. It is delicious.

Fiddle-Faddle Community Regular

Is there any way you can bring her some gluten-free pizza from home for Friday's lunch? If you can't find a frozen gluten-free pizza, there are several crust recipes on this site, all decent or better. If you are totally stuck, lightly toast a couple of slices of gluten-free bread in the oven, smear them with butter, garlic, and Italian spices, add your favorite tomato sauce, cheese, toppings, and bake til the cheese is the way you like it.

You can make it the night before and reheat right before her lunch time.

sparkles Contributor

Just wanted to put in some info about pizza.... I buy a gluten-free pizza (personal size) from a bakery called Mad Woman bakery in Minneapolis. I know that they have this pizza in Whole Foods up here. I do not know if they have it in all the Whole Foods store but it is really good. They sell several kinds and the crusts by themselves. I have tried lots of other brands and have tried making my own and this is the best by far. GOOGLE "Mad Woman Bakery" and see if you can find if they sell this product in your area. It can be microwaved and possibly the school would be willing to microwave it for you... with all the necessary precautions. Good Luck... On your original question, the best way to go gluten-free is to just do it. I know that when I was diagnosed I was going to my cousin's 60th B'day. When I got to her house, I found out that I had been elected to make the chicken pot pie...an old family tradition. I knew that I really had a choice.... one more dinner of pot pie or just go cold turkey. I chose to not eat it and I think that was the beginning of realizing that this was not just a diet, it was a whole lifestyle. I have been on diets off and on all my life and this is the one I religiously stick to. I know that as a child it will be a lot harder to follow the diet but you need to be able to help her realize that food is nourishment not comfort. My kids and my husband are really supportive and we don't have a lot of gluten in the house. That makes it a whole lot easier for me. As I said before, good luck.....


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



Celiac.com Sponsor (A8-M):



Guest lorlyn

My daughter is 10 and was diagnoised in November-06. We went to see a dietician and it was no help at all. I already knew more than she did just by reading post from this forum. The other day I got a bill for $231.00 for her consult that was five months ago. :angry: Her insurance does not cover dietician services. Just start on the new diet and let your daughter learn to read labels with you, my daughter knows them as well as I do. I let her choose the foods that she wants so it makes it easier on her. It has been tough but it is finally getting a little easier. Good luck and let us know if we can help.

tarnalberry Community Regular

You start by doing! That you already have a number of gluten free meals is a great starting point, and now you have to look at how you can creatively replace the gluten that's in the other meals. I would encourage the whole family to eat gluten free at shared meals - it's easier on prep, easier on her mentally, and still healthy and tasty. Creativity is, IMHO, the key.

kbtoyssni Contributor

I'd go gluten-free ASAP. There's no point in delaying her healing. And that means no school pizza on Friday. Try making your own pizzas out of tortillas, eggplant, etc. Glutino makes a great frozen pizza but it's pricey. I make my own pizza crust using the recipes in The Gluten Free Gourmet.

Most people on here will say that a dietitian often isn't that helpful since they don't live the disease and aren't up on the latest ingredients, etc. I think this site is a much better resource than a dietitian.

Also, don't worry too much if you mess up. I made plenty of mistakes in the first few months, but now I rarely make one.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,034
    • Most Online (within 30 mins)
      7,748

    CE1963
    Newest Member
    CE1963
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Jmartes71
      Thankyou so much for your words.Its a hard battle when a supposed well known hospital whose celiac " specialist " has down played me because my colon looks fine and put it in my medical and so pcp doesn't take seriously. In their eyes we all carry that gene.Im having alot of bad days trying to be positive because of it.
    • Scott Adams
      Your experience is both shocking and critically important for the community to hear, underscoring the terrifying reality that cross-contamination can extend into the most unexpected and invasive medical devices. It is absolutely devastating that you had to endure six months of sickness and ultimately sustain permanent vision loss because a doctor dismissed your legitimate, life-altering condition. Your relentless research and advocacy, from discovering the gluten in MMA acrylic to finding a compassionate prosthodontist, is a testament to your strength in a system that often fails celiac patients. While the scientific and medical consensus is that gluten cannot be absorbed through the skin or eyes (as the molecules are too large to pass through these barriers), your story highlights a terrifying gray area: what about a substance *permanently implanted inside the body*, where it could potentially shed microparticles or cause a localized immune reaction? Your powerful warning about acrylic lenses and the drastic difference with the silicone alternative is invaluable information. Thank you for sharing your harrowing journey and the specific, severe neurological symptoms you endure; it is a stark reminder that celiac is a systemic disease, and your advocacy is undoubtedly saving others from similar trauma.
    • Scott Adams
      Those are driving distance from me--I will try to check them out, thanks for sharing!
    • Scott Adams
      I am so sorry you're going through this bad experience--it's difficult when your own lived reality of cause and effect is dismissed by the very professionals meant to help you. You are absolutely right—your violent physical reactions are not "what you think," but undeniable data points, and it's a form of medical gaslighting to be told otherwise, especially when you have a positive HLA-DQ2 gene and a clear clinical picture. Since your current "celiac specialist" is not addressing the core issue or your related conditions like SIBO and chronic fatigue, it may be time for a strategic pivot. Instead of trying to "reprove" your celiac disease to unwilling ears, consider seeking out a new gastroenterologist or functional medicine doctor, and frame the conversation around managing the complications of a confirmed gluten-free diet for celiac disease. Go in and say, "I have celiac disease, am strictly gluten-free, but I am still suffering from these specific complications: SIBO, chronic fatigue, dermatological issues, and high blood pressure linked to pain. I need a partner to help me address these related conditions." This shifts the focus from a debate about your diagnosis to a collaborative plan for your current suffering, which is the help you truly need and deserve to work toward bouncing back.
    • NanCel
      Hello, no I had to have them re done and then used a liner over the top.  Many dentists are not aware of the celiac effects.  Best of luck.   There is other material, yet, very expensive.
×
×
  • 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.