JennyC

Many people with Celiac disease are lactose intolerant for at least the first 6 months after starting the gluten free (gluten-free) diet because the same cells that secrete the enzyme that breaks down lactose are destroyed by celiac disease. For many people once the intestine heals after going gluten-free they can again digest lactose. My son was diagnosed about 5 weeks ago. What we do is have him drink soy milk (Silk Very Vanilla is good) and give him a dose of Lactaid before he ingests other forms of dairy. You should definitely stop consuming so much dairy, at least for right now. Some people are allergic to milk (the protein, not the sugar), and that can be diagnosed through a blood test. If you are allergic to milk, then you should not consume dairy at all.

As for general instructions, I would do a search here for cross contamination and gluten-free food lists. Some good gluten-free brands are kinnikinnick and Glutano. There are also some good mainstream brands that will not hide gluten in labels such as food starch or natural flavors, such as Kraft and Nestle. There are lots of gluten-free lists on this site. Someone just posted one from Safeway the other day.

I've seen it at Wild Oats, Nature's and Fred Meyer.

I don't really have much in the way of advice. I'm a Newbie still slogging through all the info I've found to prepare us for our pending appointment with a Ped GI.

What I notice about Steele is he is hyper sensitive about everything. He sniffles & whines over teeny things. Of course, at 5 its all a big deal.

After only a few days I already have a Things I Hate About Celiac list that's far longer than 10 items.

We couldn't go eat at Burger King like I promised him a week ago because they have absolutely nothing that's gluten-free. I knew it, but I asked anyway. Steele was inconsolable for at least an hour. He loves hamburgers, hot dogs, and all that stuff like any kid.

I cannot stand telling him he can't have it.

My eldest is baking a lemon cake today. Of course, Steele can't have any.

At 5, its totally unfair & logic doesn't matter. He wants cake! And I can't give it to him.

There are times when his mood swings way way over to super-uber-happy-go-lucky. Others he's simply a sniffling mess.

At least I found a whole food store within driving distance (translation, less than 50 miles) that has goodies of the non-gluten kind. Of course, I don't know a thing about their prices yet.

My wallet hurts!

~Raven

You should try the Kinnikinnick website. They have gluten-free hotgdog/hamburger buns. He can still have those things! They have LOTS of GREAT products. Glutano is also a great brand with lots of options.

I hate that my 3 yr old son can't have what other kids can. Especially when we're at a B'day party and the cake theme is that of his favorite movie . I hate that stores have enormous bright gluten filled displays of his favorite prediagnosis foods at the ends of every aisle. It's not enough to simply avoid the cookie/cracker aisle. I know this will be a source of conflict between my boyfriend and I. At the party mentioned above, my bf had just finished eating gluten pizza and took a sip off of my son's drink. I responded "you just glutened him." I got mad at me. When he was talking about barbecuing this summer I told him that some charcoal has gluten in it. His response was that it can't be that bad. Such is life. I will continue to be the best advocate I can be for my son. What do you guys do about barbecues?

Oh yes. Cooking EVERY night is the worst. Round Table used to know me by name.

Celiac disease does put one at a higher risk for GI cancer, diabetes, and additional autoimmune disorders. The only way, that I know of, to decrease the risks is to have a strict gluten free diet. I have read that high tTG levels are associated with higher than normal cancer rates so you want to be sure that you get that under control. Although taking antioxidants and eating a healthy diet and exercising will still continue to decrease cancer risks.

You may be feeling bad because you are reacting to dairy. I learned from others that you are usually lactose intolerant for at least 6 months after going gluten free. If you have not already, it may be useful to get a blood allergy test so you know for sure what you are allergic to.

Funny you should ask. I was contemplating that same test for my son last week. I have Regence BlueCross BlueShield of Oregon. They said that they would cover it like an out of network provider. (In my case they would pay 60%.) Any lab tests are considered major medical, so the annual deductible applies. You may want to double check. Call enterolab and get the CPT numbers for the tests. Then call Regence and give them the numbers, and they will tell you if they will cover.

Thank you for all the wonderful responses! I really think I just felt so overwhelmed on Friday, relieved to finally have an answer, but then it just seemed like we hit a brick wall!!! I spent the weekend cleaning and getting Kaitlyn Grace her own shelves in the pantry, do I need to change her dishes out? All weekend she's been eating off paper plates I got her own jar of peanut butter, she LOVES the Van's waffles. I was happy to find some things at Kroger.

I got rid of all my son's plastic bowls and plates. Anything that is typically hard to clean (strainers, sifters, baking pans with square corners), or is scratched/really old (anything wood or plastic), or anything porous (wood or cast-iron). I also got a new toaster.

To me, it looks like "ring-worm." I know that it sounds gross, but it's really not caused by a worm. It's caused by a fungus-like organism. It is cured by over the counter athlete's foot mediation. (I hop it's gluten-free ) For a while I was prone to this rash. Typically it is seen in people who live in dirty homes with lots of pets (especially cats), according to the doctor I saw. Well, I don't live in a dirty home, or have lots of cats , and you don't have to either. If it is ring-worm the rash should start to fade after a couple days to treatment.

I found Heallth Valley corn "chex" at Fred Meyer. I hope to make a version of gluten-free "chex mix."

I have used this recipe and it is very good. You can barely tell that it's gluten free.

Troll House Cookies

Gluten Free Recipe

Ingredients:

1 cup butter

1/2 cup brown sugar

1 cup granulated sugar

Two eggs

1 teaspoon gluten free vanilla

1-1/2 cup brown rice flour

1/2 cup potato flour (not potato starch flour)

1 teaspoon baking soda

1 teaspoon salt

One package milk or semisweet chocolate chips

Directions:

Cream butter (can use dairy-free margarine or Crisco if necessary), sugars, eggs and vanilla.

Mix in dry ingredients, then chocolate chips.

Drop by rounded teaspoons onto un-greased cookie sheet.

Flatten very slightly with fork.

Bake between 350-375-degrees for 12 minutes or so (temperature and time vary by individual oven -- if yours bakes hot, use the lower temperature).

Remove from oven when lightly browned (they over-brown very quickly).

Remove to cooling rack after a few minutes.

Note: Also good with chopped nuts and/or shredded coconut.

I would suggest going to some online gluten free food stores to get an idea of what's out there. It seems impossible in the beginning, but I'm 5 weeks into it with my son and it's beginning to seem pretty normal. I like gluten free.com. There are many products made from rice and tapioca flour. Kinnikinik (sp?) has some very good products. Many like their white sandwich bread, my son likes Energ-y tapioca light bread. One of my son's favorite snacks is peanut butter toast. It's really tough in the beginning. It will get easier, very quickly. In a couple of weeks you will have the new diet pretty much down. Remember to be mindful of cross-contamination. There have been many recent posts on the subject, just perform a search for it.

Don't hesitate to post any question. The people of this message board are great.

OOPPS. I thought you wrote cocoa and fruity pebbles. Sorry. The rice crispy type cereals are not gluten-free, but the pebbles cereals are.

I have no idea. You should probably contact the companies directly because they have so much protein and fillers in them.

I don't see anything wrong with it. I went to your blog and I bookmarked it because the blog contains some good recipes. I think it's great that you are increasing celiac awareness.

Yes they are, as is berry pebbles. Newer Trix cereal is also gluten free. Make sure the food starch is corn. Older boxes of Trix are not gluten-free. Dora's stars cereal, Disney's Little Einsteins, and Mickey Mouse (Clubhouse?) are also gluten-free.

When I contacted the Floam company I got the "what's gluten?" response. Gotta love that. Anyway, I had them read the ingredients to me and it basically consists of tiny styrofoam balls and a bunch of very artificial-sounding ingredients. I don't know if you can but gluten-free playdough, but here's a recipe. (I haven't tried it yet.)

Gluten-free Play Dough

2/3 cup rice flour

1/3 cup potato or corn starch

1/3 cup salt

2 tsp xanthan gum

1 Tbsp cream of tartar

1 package unsweetened Kool-Aid

1 Tbsp vegetable oil

1 cup warm water

Extra potato or corn starch for kneading dough

In a sauce pan combine rice flour, potato/corn starch, salt, xanthan gum, cream of tartar, and Kool-Aid. Add oil and warm water to flour mixture and mix well. Heat the mixture on med. heat for about one minute or until mixture boils. Remove from heat. Turn the dough onto a cornstarch-floured board or wax paper. Knead in enough starch until the dough is no longer sticky.

Store dough in air-tight container. If dough becomes too dry or thick microwave on high for 30 sec and knead.

I'm in the process of getting a second opinion for my 3 yr old son. He had positive blood work (tTG), and an outstanding dietary response to the gluten-free diet. The 1st pediatric gastro. wouldn't diagnose him with celiac unless he does a biopsy and it comes back positive. I can't put him back on gluten . I'm just not willing to loose the progress he's made thus far. He's gaining 3 lbs in one month! I came across Enterolab postings here and have contacted them. According to them he can remain gluten-free and still get good results from Enterolab. I know that many have given up on doctors, and enterolab functions to confirm or reject diagnosis in those cases. I would like to have an official diagnosis for my son so that he can have appropriate care. I'm wondering if I take Enterolab results to a future gastro appointment, if I'm likely to get anywhere?

I'm a little sketchy about Enterolab because he has yet to publish his work, and the testing is VERY cheap compared to other facilities. The whole celiac panel and gene test is around $370. That's how much I owe on his blood work!

As always, all input is really appreciated. I want want to do the best I can for my son.

This is a list that I got a couple of weeks ago from the manufacturer. The following are gluten-free:

ORE-IDA PRODUCTS:

UPC CODE: PRODUCT NAME:

13120XXXXX- ALL VARIETIES of Ore-Ida

Newer Trix cereal is also gluten free. Just make sure that you read the label. My son likes Trix more than fruity pebbles. Other than that, I think the pebbles cereal is the best. My son doesn't really like the speciality gluten-free cereals either.

Yes please do share. I made gluten-free brownies...and they were dry and crumbly.

The whole cross contamination issue took some time to get used to. (We're only in week 5.) I'll go over my practices. Our entire home is not gluten-free, but mostly it is except for regular bread and pasta. (gluten-free is so expensive!) We bought a new toaster, some new pots and pans, cookie sheets, strainer, utensils, and cutting boards. There are varying opinions as to far you have to go with buying new pots, and pans, ect. but ours were quite old and were scratched. Better safe than sorry. I gave everything a good wash down. I too usually cook his food first. I never put ANY food or untensil directly on any surface. I wash the gluten-free dishes first and try to avoid contamination of the gluten-free dishes by placing gluten utensils in them. My son is also 3.5 yrs old. I got rid of all of his plastic dishes. I bought some smaller sized glass plates and bowls. (Plastic, wood, and Teflon are the worst to keep because of scratching.) We have separate butter, peanut butter, ect. and label them gluten-free. As for play-dough. I got rid of it. I kept the toys that go with it thinking that I might wash them and make gluten-free "play-dough." There are recipes out there. I bought floam. It's interesting but does not take the place of play-dough because you cannot use cookie cutters with it.

Good luck!

Oscar Mayer (a Kraft foods global company) should list any gluten if used. As a write I am eating Oscar Mayer smoked turkey breast lunch meat and it has no gluten ingredients.

Well, after reading another topic and calling the company I decided that I am going to get the enterolab testing done. I will not biopsy my son because I refuse to poison him for the sake of a test that produces false negatives. It is my sincere hope that I find a pediatric gastro that takes the full gene and stool panel along with previous symptoms and positive dietary response as "proof" of celiac disease. If not, then at least I know what is truly going on inside my son. I refuse to begin a repeated cycle of blood tests and biopsies. I know that this diet has helped my son.

I want all of those who have responded to my numerous posts to know that I am very grateful for the advice you have given. Thank you.

I see your point about having your son treated as a Celiac patient. Have faith , there are some specialist that understand Celiac and know how difficult the diagnoses can be. Can you check with your local Celiac support group for an experinced specialist in your area?

L.

That is a great idea. I think that I'm going to look into that now. I'm sure there has to be one.

Thanks.

Thanks for the link. I'm interested in the tests, and am surprised by how affordable they are. (About half the price of a full blood work up.)