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New To Disease - Would Love Suggestions Or Advice

momandgirls

By momandgirls
in Coping with Celiac Disease

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momandgirls Enthusiast
momandgirls
Posted

Hello - I've written before about my daughter and her test results (elevated TTG antibodies, negative endomysial antibodies, no flattening on biopsy but very high leukocytes, positive for CeliaGene and symptomatic for many years and particularly symptomatic when eating foods with high gluten like bread). So, even though the doctor, for whatever reason, is hesitant to diagnose her with Celiac (she keeps saying, "Well, she probably has it"), I've decided to take matters into my own hands and have made the decision to go gluten free for her (she's 11). I guess, since pretty much everything I know about Celiac I've learned from this board, I'm just looking for any advice or suggestions that anyone can give me. We're feeling sort of lost and overwhelmed at this point. What brands of food are the best? Any books that are particularly helpful? Corn and rice are always ok, right? But, then, I know there are other things to watch out for like modified food start - right? Honestly, just about anything you could tell me I'd appreciate. Thanks!

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tiffjake Enthusiast
tiffjake
Posted
Hello - I've written before about my daughter and her test results (elevated TTG antibodies, negative endomysial antibodies, no flattening on biopsy but very high leukocytes, positive for CeliaGene and symptomatic for many years and particularly symptomatic when eating foods with high gluten like bread). So, even though the doctor, for whatever reason, is hesitant to diagnose her with Celiac (she keeps saying, "Well, she probably has it"), I've decided to take matters into my own hands and have made the decision to go gluten free for her (she's 11). I guess, since pretty much everything I know about Celiac I've learned from this board, I'm just looking for any advice or suggestions that anyone can give me. We're feeling sort of lost and overwhelmed at this point. What brands of food are the best? Any books that are particularly helpful? Corn and rice are always ok, right? But, then, I know there are other things to watch out for like modified food start - right? Honestly, just about anything you could tell me I'd appreciate. Thanks!

I would recomend getting a couple of books:

Dangerous Grains (if you like the scientific stuff)

Wheat Free, Worry Free by Danna Korn

And there are some really easy recipes in: Wheat-free, Gluten-free Cookbook for Kids and busy adults by Connie Sarros

I am pretty new to all of this too ( just a couple of months in for me) and I have a general rule to stay away from anything made with flour. (there are different kinds of flours, but when I have called the pizza place to ask if they had a gluten free pizza crust, they said "sure, we don't put that stuff in our pizzas" but they had no idea what I was talking about until I said "really? what kind of flour do you use" and they said "white flour" and I just thought, unless they KNOW, then they don't know the difference between soy flour, bean flour, wheat flour, etc. I even had someone say "we don't use wheat flour, we use white flour"......)

Unless I made it or bought it myself from a gluten-free company, I don't trust it. I stick with meat, veggies, and salads when eating out or at a friends. That might be a good rule of thumb for your daughter. And the "modified food starch" is what you are looking for, in things like salad dressings and canned baked beans and stuff like that. It would be in things that need to be thickened to taste better (according to the companies that make the stuff). The problem is that you don't know if you are getting corn starch or wheat starch (or any of 10 other starches) so unless you call the company and ask, it is better to be safe than sorry. Well, hope that is a good starting place!

momandgirls Enthusiast
momandgirls
Posted
  • Author

Thank you - yes, your information is a great starting place. I'm going to try to get to the bookstore tonight as we're leaving on vacation on Sunday. I know that my local library doesn't have those books so hopefully Barnes and Noble will. I was wondering...what about vinegar? or canned/boxed broth? I'm trying to think of recipes that I was planning on cooking while away and what ingredients now should be subsituted...thanks!

teankerbell Apprentice
teankerbell
Posted

Go to Whole foods and get the Organic Chicken Broth. Some vinegars can be contaminated. If you go to Whole Foods website, you can print a list of gluten-free foods. Also, they label their shelves if it is gluten-free. Read the labels carefully, and look for the allergy alert. She should stay away from dairy for now.

Guest nini
Guest nini
Posted

Dana Korn also has a book called something like Kids with Celiac... anyway, I got a copy of that and I let her teachers read it as well as the school nurse. I also have printed letters for school to alert the staff to the dietary restrictions, but I also send her lunch to school. I don't rely on the school to provide her with a gluten free environment. That's not going to happen, so I just do the best I can. I send gluten-free playdough for her class, gluten-free pasta for art projects, safe snacks for birthday parties at school and I keep a supply of gluten-free cupcakes in the freezer to send if she has a birthday party to go to with friends...

It can be challenging, but the rewards are amazing. I was so impressed in the change in my child when she went gluten-free... it's been almost 3 years and she's doing so well with it.

Rachel--24 Collaborator
Rachel--24
Posted

Barnes and Noble & Borders both have lots of books on gluten-free eating but I had trouble finding books on living with gluten intolerance. I had to order those from Amazon. Wheat Free, Worry Free is a great book and also Dangerous Grains. Dangerous Grains doesnt really deal with the diet itself...it gets more into the "what and why" of gluten intolerance. I love that book.

Have you checked out the safe/forbidden food lists? These lists are very helpful...print them out and keep them for reference.

https://www.celiac.com/st_main.html?p_catid...-25106081771.42

The delphi list is a list of mainstream foods that are gluten-free.

1) Go to the website, Open Original Shared Link

2) Click on "messages" or "start reading"

3) Select the folder "gluten-free Product List"

4) Click on the topic called "Downloadable files word"

5) Of the four options, choose the one in the upper right.

You may need to register (the basic version is free) in which case, just register first, then complete the steps above.

Keep asking questions. This is where I learned everything I needed to know. :)

TCA Contributor
TCA
Posted

Just so you know, we went back to the Ped. GI last week and he was still hesitant to give our kids an official diagnosis of celiac disease. They didn't have the gold standard of a positive biopsy and an diagnosis can make it harder to get insurance and such. He wants to wait and only give one if we have to have it. He said he knew I would keep them on the gluten-free diet since he knows me really well, but wanted to wait for a diagnosis since that would be with them for life. I don't know yet if I agree or not, but even with all the evidence, drs are still hesitant. go figure.

I sent my food list to you. Hope that helps!

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ianm Apprentice
ianm
Posted
...and an diagnosis can make it harder to get insurance and such.

...wait for a diagnosis since that would be with them for life.

I have to agree with the Dr. on this issue. One of the reasons I refuse to get an official diagnosis is because of health insurance. The only thing you can do for celiac is change your diet. I had such a positive response to the dietary change that an official diagnosis would just mess my life up and I really don't need that right now.

tarnalberry Community Regular
tarnalberry
Posted

The safest way to go is to stick to things that are whole foods and naturally gluten free - produce, beans, gluten-free grains, meats, eggs/dairy. if something comes in a box or a bag, ALWAYS read the label; NEVER assume. if it's prepared/processed in any way, ALWAYS read the label; NEVER assume. (part of the reason for ALWAYS reading the label is that companies DO change their formulas and have been known to add wheat to previously safe products.)

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