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Another Newbie - 6yr Celiac Positve, No Symptoms


Benshell

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Benshell Explorer

First I want to say thank you to everyone who posts answers on these forums...I've been researching celiac and gluten-free diets for the past few weeks while we got things sorted out with my daughter and I've found so much helpful information - so thankyou.

My6 yr old was diagnosed with Celiac via blood test (part of routine with her thyroid test -she was born without a thyroid). We've decided NOT to do the endoscopy as the end result will probably be the gluten-free diet anyway - whether this year or next, etc.. as we were concerned about the general anesthesia. My daughter doesn't have any of the "typical" gastro-symptoms. She's been growing and developing fine. We're hoping going Gluten Free might help some of the things that may be caused by celiac - post nasel drip, headaches, tummy aches, "growing pains", moodiness. But mostly its just preventative as the dr feels its jsut a matter of time before celiac rears its ugly head.

So I'm doing my first shopping trip and have made up a list of suggestions based on previous posts. Which is great for "replacement" items (breads, pasta's, etc..). My concern and worry is the stuff I'm not sure about - flintstone vitamens, welches fruit gummies, Quaker popcorn rice cakes, etc.. There is stuff in the ingredients that I can't figure out and how am I supposed to remember EVERYTHING that can possibly contain gluten?? What do I do in this case without making 15 trips a week to the supermarket while constantly calling/checking with the manufacturer?

Any help would be greatly appreciated. I'm already going out tomorrow to buy a new bread machine (mine's contaminated), plenty of foil for the toaster, an extra strainer for gluten-free pasta/rice, new butter, peanut butter, etc...

This is all very overwhelming. I want to keep feeding her healthy foods, as much as a 6 yr old who is starting to be a "picky eater" can be. I have no problem cooking/baking my own foods as I don't work and have the time.

Thank you.

michele


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Rondar2001 Apprentice

I would suggest joining your local celiac chapter if you have one. We went to an introductory meeting where they had binders with labels of gluten free foods and we were given a small book with lists of safe and unsafe ingredients. Its also a good place to talk to others that are doing the diet and find out where to shop and any other tips they may have.

For my daughter, I started out by shopping at the health food stores. They tend to have sections of clearly labelled gluten free foods. From what I've read, Quaker's products are not considered gluten free.

I wouldn't buy too many replacement foods at first. I found that my daughter didn't like too much right away. I think she remembered the taste of wheat foods and was comparing the new ones to these. After a few months, she started to like the breads alot more. Try to keep her diet as natural as you can while she is healing, then add in processed foods slowly. Since you are a baker, a good cookbook will help fill in this gap.

One thing that helped out was buying a gluten free flour mix. I used this for breading meats, gravies, soups, etc. I tend to make extra and send it with her to school in her lunch in a thermos. We also buy the corn pastas, I find they taste closest to wheat and our whole family will eat it.

I would definitely purchase a toaster dedicated to her foods as opposed to trying to cover a gluten one with foil. The chance of contamination is just too great. You can purchase bread bags if she needs to use a toaster at someone else's house. Make sure you have dedicated condiments for her to use. I mark hers with green stickers so everyone in the house knows which ones are hers.

Don't worry, it does get much easier.

SD77 Newbie

I ordered one of the Gluten-Free shopping guides (Cecelia's marketplace...though there are others) and it helps sooo much!! I keep it in my purse all the time, so I have it when grocery shopping and then I might pull it out when I'm cooking at home! I ordered an extra copy for giving to relatives before we visit them, so they have an idea of what to feed my son!!

Good Luck!!

Shannon

LDJofDenver Apprentice

Both of the above! If you have a local celiac chapter they may have a small local-food/brands guide available. If not, get online and check out these grocery guides. I didn't know about them until a couple months after diagnosis, and it has made a huge difference in grocery shopping.

These gluten-free grocery shopping guides list mainstream products (Kraft, Heinz, Kroger, Hormel, etc.) by category (soups, chips, dressings, spaghetti sauce, etc.)

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  • 2 weeks later...
Benshell Explorer

I just wanted to say thanks.. WE've been almost 2 weeks gluten free (STRICTLY INFORCED) and she seems to be doing well. Lot of trial and error as some of the snacks that I got as replacements (like granola bars) she doesn't like, only the junk food and I'm trying to keep her healthy and give her more fiber since whole wheat bread/cereal is out now and she hates gluten free bread (we're going to try and make our own...if she does it, maybe she'll like it better).

Thank you SO MUCH for suggesting the shoppers guide. I got it from cecelia's marketplace like you all advised and it is a LIFE SAVER!!! I just went through my whole pantry and marked everything up either gluten-free or NOT gluten-free based on the book, only a few places I need to call. It is AMAZING.

Taco night was a huge success in our house. Trying gluten-free pasta with meat sauce tomorrow night, tonight is sweet and sour chicken with rice (LA CHOY). Its not as hard/overwhelming as I thought it was 2 weeks ago.

THANK YOU ALL FOR YOUR SUPPORT! I'm sure I'll be sending more questions in the future, just wanted to say thanks!!!

Rondar2001 Apprentice

Glad to hear you are finding your way.

Just one note, most granola bars are not considered gluten free. Oats are usually contaminated with gluten unless they are specifically processed to be gluten free (the package would state this). Also, some celiacs, like my daughter, are not able to tolerate even the certified gluten free oats. Our doctor suggested waiting a full year before even trying these oats to allow the gut to fully heal. I have found some gluten free granola bars made with quinoa that aren't too bad.

I try to make brownies and cookies at home and then freeze them for her lunches and snacks. She also eats puddings, jello, and cheese sticks as a quick snack.

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    • 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.
    • trents
      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
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