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

Deciding To Go Gluten Free, Need Advice


Siggy

Recommended Posts

Siggy Newbie

Hello All,

I have a 3 year old son who was born 9 weeks premature and was diagnosed with Trisomy 16 (a rare genetic disorder). He is doing great other than some sever constipation issues that we have been battling for over a year now. I don't feel that he has ever had normal bowels but at 24 months he was hospitalized for a sever impaction. Since then I have been trying to maintain a somewhat normal bowl regimen with Miralax and other laxatives.

We have seen 2 GI Dr., our current Dr. has done a number of testing which have all been normal. He has had a blood test and biopsy that both came back negative for Celiac. I have been dealing with this for so long now that at this point I am willing to try anything that will help him to get better. I recently started eliminating dairy from his diet (milk, cheese, butter, yogurt, not completely dairy free) but I am interested in starting a gluten free diet.

I have done a lot of research, I am starting to feel very overwhelmed with the diet and don't know where to start. I would appreciate any advise that you have. I am looking for good resources (cook books, websites), products that your kids enjoy, where to buy, etc. ?

I have read some some of your stories about how your kids are now doing better and would love for this diet to be the miracle I am looking for. How long was it after going gluten free that you saw a change?

Thanks for your help!


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



Celiac.com Sponsor (A8-M):



Kelleybean Enthusiast

Hi -

My son (3 too) is on a gluten free diet for autism, not celiac. Because of that, we had the luxury of taking our time switching over since it wasn't an emergency. I think because of his autism, my son is super sensitive to texture and therefore fairly picky so we've had to experiment a lot. The diet has made a big difference for him. The first thing we did was find or made substitutes for things he already liked.

Here are some products that we've had good luck with ... Van's waffles, Udi's bread for PB&J, grilled cheese, French toast, etc. We keep some Amy's mac and cheese and Applegate Farms hotdogs in the freezer for emergency dinners. We like Pamela's baking mix too, and also her cornbread mix. I don't use it often, but Betty Crocker puts out decent brownie and chocolate chip cookie mixes. We also do Envirokids cereal a lot but most of the Chex's are gluten free. Rice Krispies also just came out with gluten free cereal. I made a single serving of a rice Krispie treat to send with him to school this morning.

The sites I use most often are the Spunky Coconut and Elana's Pantry. I make muffins using coconut or almond flour to sneak in some protein using some recipes from those sites. I also like the ADHD&Autism Cookbook - has a lot of good ideas for picky eaters even if you aren't dealing with either of those disorders.

Hope this helps!

Siggy Newbie

Thank You! I will take a look at the sites.

Since he doesn't have Celiac and it's not emergent that we go gluten free, I would like to slowly (not too slow) transition over. I am trying to look for gluten free things to replace other things that he likes. I think this will make it easier on me as far as mentally :) I found myself very overwhelmed last week and feeling discouraged.

The GI Dr. said she would like me to go strict gluten free for at least a month and because he isn't necessary allergic but possibly intolerant we may be able to start introducing a few things back in. Which would be nice, it would make it a little easier when on those rare occasions we go out to eat.

Mizzo Enthusiast

Our fav's are:

for easy ready

Udi's gluten-free bread, bagels, hot dog rolls and hamburg rolls

I am now strictly using King Arthur flour blends for :

cookies

muffins

pancakes

brazilian cheese biscuits

cakes/cupcakes (their chocolate is awesome)

I have started using King arthur Hi-fiber maize = resistant starch. subbing out 1/4 cup of any recipe. It packs a whopping 6 gr fiber per 1 1/2 Tbl

I have recently started making the KA bread subbing out 1/2 cup with the maize and this bread is really good , better than Udi's and taller loaves. Runs about the same price.

Pamelas mix for pancakes is also good (I add in flax meal for fiber/protein ) and cinnamon to cover up the specks :)

Frozen:

Bell and Evans has awesome chicken tenders, breast, nuggets

Starfish brand has great breaded frozen fish ) like Gortons

Amy's frozen mac and cheese

Amy's burrito's

Udi's pizza crust

Vans waffles

Deboles corn spaghetti

Schars: pasta Tartalle (like egg noodles), Annellini noodles (tiny O's for soups)

Schars: crackers and breadsticks

I find most brand in Market Basket with just Schars brands in Stop and Shop

Cara in Boston Enthusiast

Two of four in our family are gluten free, but I only cook gluten-free meals.

At first we found pretty good gluten-free substitutes for our favorite foods - this was important to get our gluten-free 6 year old on board. After almost a year, we still use some of them but have been moving toward more naturally gluten-free foods. I put on 10-15 pounds and it think it has a lot to do with the empty, starchy calories in lots of processed gluten-free products. Not a problem for a young child, but there really isn't much nutrition in the gluten-free "substitute" foods.

Our favorites (most have been listed already)

Udis products for bread, bagels, hot dog buns, hamburger buns and the occasional sticky bun

Ancient Harvest Quinoa Pasta - cannot tell the difference (except for the price!) from "regular" pasta

Vans gluten-free frozen waffles

Pamelas pancake mix (we make lots and lots of pancakes and use them for snacks, breakfast sandwiches, treats (nutella) etc. I make a big batch and freeze them. Add lots of extras in to make them more healthy.)

Bob's Red Mill Pizza Crust mix

Chex cereal

Glutino or Snyders gluten-free pretzels

Schar crackers - handle package with care - they get broken up easily

Frozen cupcakes from Whole Foods - keep them in the freezer for when you go to birthday parties. I also keep some in the freezer at school for in-class parties.

We also use lots of "regular" products that are gluten free - rice cakes, corn tortillas, popcorn, etc.

I do miss some of the "convenience" foods we used to buy (frozen meatballs, mac and cheese, rice pilaf mixes, taco spice, etc.) but now I just make a homemade version and freeze them in single-portion size. They taste better (especially taco spice) and turned out to be inexpensive - so it offsets the higher priced gluten-free products we are now buying.

M&Ms (plain and peanut) are gluten free - be sure you always know a few mainstream "treats" that are safe.

Good luck -

Cara

Siggy Newbie

Thank you all for your tips!

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. - lizzie42 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      Son's legs shaking

    2. - trents replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

    3. - trents replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Disaccharide deficient, confusing biopsy results, no blood test

    4. - Paulaannefthimiou posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

    5. - jenniber replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Disaccharide deficient, confusing biopsy results, no blood test

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

    • Total Members
      132,850
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • lizzie42
      My 5yo was diagnosed with celiac last year by being tested after his sister was diagnosed. We are very strict on the gluten-free diet, but unsure what his reactions are as he was diagnosed without many symptoms other than low ferritin.  He had a school party where his teacher made gluten-free gingerbread men. I almost said no because she made it in her kitchen but I thought it would be ok.  Next day and for a few after his behavior is awful. Hitting, rude, disrespectful. Mainly he kept saying his legs were shaking. Is this a gluten exposure symptom that anyone else gets? Also the bad behavior? 
    • trents
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
×
×
  • 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.