Website Information Correct?

[ce-wyant]

I am new here, my 3 year old daughter had positive blood tests last week and the doctor told us to start the Gluten-Free diet ASAP while we are waiting to see the Ped GI. Since I had never heard of Celiac Disease until a month ago, I don't really know much about eating gluten free. I went to Whole Foods and bought her a ton of stuff that was gluten free, but I am trying to figure out what regular products she can eat. I found the website www.glutenfreeinfo.com and it lists a bunch of different products they are claiming are gluten-free. I guess companies have written in and told them what products are gluten-free, but the first two I have tried do not seem to be. It said she can have corn pops but when I got the box home I read that it contains wheat, so I did not give it to her and someone on the childrens forum told me not to give it to her also. Tonight she wanted soup, her favorite use to be Campbell's chicken noodle, so my husband went to the store to buy her Campbell's Chicken and rice because the website said it was ok. My husband called me from the store and said that it also had wheat in the label. He read some more labels and ended up getting her Healthy Choice Chicken and Rice. I don't know if it was ok for her to have or not, but I feel bad for her and let her eat it anyway. We haven't met with the specialist yet or gotten the biopsy, so I am thinking a little gluten won't hurt her until we get the biopsy done and a 100% diagnoses. I really don't know anything about this or what the right or wrong's are that I should be doing. I would love to find a valid list of what regular grocery store products are ok. I have ordered 4 different books from Borders, but they have not arrived yet.

Cara

[CarlaB]

Welcome!

I feel like it's really important to learn to read labels because formulas change, so any list you have may or may not be current. It's become much easier now that they have to label wheat as an allergen. Now, after you check the allergy statement for wheat, you need to look for barley (malt), oats, and rye.

I usually use Healthy Choice or Amy's soup. Most Campbell's soups have gluten.

For mainstream cereal there's Cocoa Pebbles, Fruity Pebbles, and Dora the Explorer Cinnamon Stars. I've heard that there are a couple new Disney cereals that are gluten-free. You also need to watch for "malt" in the ingredients as it's derived from barley. There are several gluten-free cereals available as well, ones that are labeled gluten-free.

You are not supposed to cut down on gluten or start the gluten-free diet until after all testing is completed. The intestine heals, so testing can come out negative because of being on the gluten-free diet. Some people opt to not have the biopsy and just use the blood test and dietary response as a diagnosis. Some prefer the biopsy.

[happygirl]

Cara:

Welcome to the board!

To be honest....lists are as outdated as the day they are printed or posted, because ingredients could change at any time.

The only way to know if something is gluten free is to learn to read the labels (which, it sounds like you and your husband are learning quickly!). The good news is that any "wheat" must be labeled now, according to the Food Allergen Labeling Law that started Jan 1, 2006. So wheat cannot be hidden in any product....it will have to be clearly labeled.

After that, we have to worry about rye, barley/malt, and oats. Often, they will be listed (rye is not as common unless in rye bread, which is out anyways....oats aren't in a ton of products other than oat-based cereals, etc.) So that leaves us with barley and malt (malt is derived from barley). These could technically be hidden in something like natural or artificial flavors...but the good news is that there are MANY companies that state that they will clearly list all gluten, and wouldn't hide it (so if barley or malt was in something, it would be clearly listed). The allergen labeling law covers wheat, but not gluten....so then when companies say that they will list any gluten, it makes it easier for us. Kraft and McCormick's are two brands that I use often that clearly lists all gluten. Here is a pretty great thread and list that will help you as to which companies say they will clearly list gluten.

Open Original Shared Link

I hope this helps get you started.....let us know what else we can do to help.

By the way....your ped GI will probably want to do a biopsy of her small intestine (which is the "gold standard" for a Celiac diagnosis). In order to have an accurate biopsy, she will have to continue eating gluten before the biopsy. Going on the gluten free diet begins the healing process, and then she could have a negative biopsy. It may be worth it to call the GI and ask what to do. They may be progressive and recognize that the blood tests are indicative enough without the biopsy (they are!!!). In any case, it will be your decision to do the biopsy or not....if so, I'd assume you would want to do it ASAP so you can get her on the diet....in which case, she needs to be eating gluten now for an accurate biopsy. Celiac is a patchy disease (damage can be here and there), so it can easily be missed.

What blood tests were run and which were positive?

Laura

[ce-wyant]

Thank you all for the great information. My doctors office is not too great on communication and since I was completely worried I didn't ask what tests were being run, so I don't have the exact names. 3 months ago she had her 3 year well child visit. The doctor noted that she had not grown or gained weight in 6 months, she has been a small child since birth (never going over the 3rd percentile) and has had problems with constipation since 9 months. They put her on Miralax at age 2 because the constipation was constant and would go once a week. Anyway, back to the subject, at her 3 year visit, she had not gained weight, so the doctor wanted to check her again 3 months later. I took her in for her appointment Feb. 9th and she had not gained weight or grown. The doctor wanted to do some tests. Elizabeth (my daughter) had and X-ray of her hands done to check for bone growth and also blood tests (I don't know which ones). The X-rays came back showing she is 6-12 months behind in growth and the labs showed low levels of insulin-like growth factor hormone and problems with the way she absorbed and metabolised food. They also told me she had problems with the way she fights infection, so they wanted to do more blood tests. I checked these tests and they were for different antibodies and IgA,IgG and IgT. The doctor told me these came back indicating Celiac and referred us to a Pediatric Endocrinologist and a Pediatric GI Specialist. She also told me that she wanted me to cut out as much wheat as I could from her diet until we see the specialist. I think I am going to call her on Monday and see what she wants me to do this since everything I am hearing is telling me she still needs to eat gluten. Our appointments are scheduled for the end of April, but I told the doctor I wanted them expedited, so she is suppose to be working on this for me.