JennyC

Bell & Evans all the way! My son refused Ian's. Bell & Evans taste just like Tyson's chicken nuggets. Make sure that you buy the ones in the red and black package. They also chicken strips as well. I buy mine at Whole Foods. My son loves them so much that he eats them BEFORE the french fries!

I think that doctors are reluctant to change their ways. The gold standard biopsy is how they learned to diagnose celiac disease in med school. It's hard to teach an old dog new tricks! There are many studies and peer reviewed journal articles out there saying that positive blood work along with dietary response is sufficient to diagnose celiac disease. I also believe that there was a report saying that the values of tTG correlate with the amount of damage done to the intestine. The trick is to find a doctor that is not set in his ways, or one that takes a more natural approach. I do know that whenever we make it to another pediatric gastro, I will be taking a stack of journal articles with me.

If my son would not have already started the diet, I most likely would have done the biopsy. However, I was not going to poison him with gluten to satisfy a doctor. I am satisfied with my son's response, and so is the rest of my family. My son is doing better than he has done in his entire life, and I could not be more happy. On this board people with biopsies and those without seems to be about 50:50. Do what's best for you.

For the record, the toothpaste with gluten was by Zooth, the kind with the characters on it. Zooth is made by Oral-B.

Also my son was able to have half a Lactaid at 30 lbs. It has dramatically increased his diet options.

It took a week to even get the referral to the GI. From there it was a little over a month to get an appointment. Mu son has been gluten free for over a month and we've seen the following changes:

Huge increase in appetite

Less diarrhea

More energy

Asthma is gone. I haven't needed his inhaler since we pulled the gluten.

But what has not changed is:

he still gets diarrhea, just not every day

His stomach still hurts, but much less (he's not complaining about it now but if I ask he says it hurts)

I want to give it some more time.

Is your child still getting a lot of dairy? Newly diagnosed celiac patients are usually lactose intolerant for at least 6 months. I already had my son on soy milk, and I started giving him half of a chewable Lactaid when he consumed dairy. You also have to make sure that you're checking everything. My son's toothpaste had gluten in it and I didn't realize it until recently.

Another thought:

How did you tell your child s/he has celiac disease? I'm at a loss.

I have not yet explained that he has "celiac disease" but that talk will definitely come up long before he starts school. In his book The Trouble That Jack Has they use that term but we don't directly to him yet. He knows that gluten hurts his tummy. He is in the process of learning that gluten is wheat, barley, rye, and oats.

Sounds like the doctor I took my son to, but I think my son's doctor was even more ignorant. My doctor said that if the biopsy was negative, then he doesn't have celiac disease and the blood work is wrong. I too started my son on the gluten free diet when I got his strongly positive blood work results. My son had an outstanding response. My son was not growing, had a bloated abdomen, and had the classic celiac diarrhea 3 times each day that he struggled to control. Every symptom disappeared once we got the gluten fee diet down. By the time we got to the pediatric gastro he had been gluten free for a month. There was no way that I am doing a gluten challenge to satisfy a doctor. Ask yourself this: If you did a biopsy and it came back negative would you put your child back on gluten, even though he had a positive response to the gluten-free diet? If the answer is no, then in my opinion, the biopsy is pointless. The way that I look at it is that positive blood work is very reliable and when you combine that with a positive response to the gluten-free diet, then it has to be celiac disease. I know my son got better on the gluten-free diet and that is proof. If that is not enough for my son one day, then he will have my full support to do the gluten challenge when he is mature enough to make that decision. If that time ever comes I will not have any regrets. I have struggled with this decision, and I know that I have made the right one for my family. I hope this helped.

I can't stand garbanzo bean flour or soy flour and many pre-made flour mixes, like Bob's Red Mill, contain lots of it. I make my own. It's really easy. I have tried two different mixes and both have worked out fantastic. You would not even be able to tell that the things that I made were gluten free! I just make up a bunch in advance.

3 parts white rice flour, 2 parts potato starch, 1 part tapioca starch/flour

OR

1 cup white rice flour, 1 cup tapioca starch/flour, 1 cup cornstarch, 1 TBSP potato flour

**In both cases use 1 tsp xanthan gum per 1.5 cups flour.

First, it will get better. I know it must seem impossible right now. My son was diagnosed about 4 months ago, and he is 3 years old. I told my son that a lot of foods he likes contain gluten and it makes him sick and we have to find new foods. He adjusted well and I hope your daughter will as well. There are even books for kids. My son has "The Trouble that Jack Has" and there are others. There are many normal foods she can eat. If you search this board for "normal food" lots of topics should pop up. You also have to be careful about cross contamination. She will need her own toaster and anything that maybe difficult to clean, like pasta strainers, non-stick pans and cast iron. You can find lots of information about cross contamination if you search this forum. You also need to check non-food items, like lotion-yours and hers, sunblock, makeup, dish soap, etc. You should print off the forbidden foods list from this site and carry it with you for a while. You want to pay special attention to modified food starch, spices, natural flavors, spices, and thickeners. Remember to always check every label every time. The best policy is to stick with the companies that will list their gluten. I will attach the file at the end. You can also go to company websites or call them directly.

I'll give you a small list of my son's favorites to get you started.

Cocoa or Berry Pebbles

Trix--check the label!

Dora stars cereal

Yoplait yogurt

Lays Stax or Kettle chips

Cheeto's

Pic-Nic french fies in the snack isle

fruit snacks

String cheese

Ore-Ida French fries (they have a gluten-free list)

Classico spaghetti sauce (all are gluten-free)

Oscar Meyer lunch meat

popsicles/ice cream

Craisens/raisins

popcorn

Tinkyada pasta

Ener-G wheat free, Seattle, and Cinnamon crackers

Glutino "Ritz" crackers

Blue Diamond Nut Thins (made in a facility with wheat)

Bell & Evans chicken nuggets (Black & red package)

Glutino pretzels

Kinnikinnick pizza crusts, bagels, K-Too's (oreos)

Van's gluten-free waffles

Pamela's pancake mix

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I fed my son breast milk that I pumped for 9 months. He would never breastfeed from my body. If you need decrease your breastfeeding sessions you can maintain your milk supply by pumping thoroughly and often. I rented a hospital grade Medulla double breast pump. I pumped EVERY three hours during the day--NO exceptions. If it had been two hours and I was going to go to the mall, I would pump before I left. You need to make you body think the baby needs more milk. I would pump until both breasts were completely empty. At that time nothing would come out for a couple of pump cycles and then really think fatty milk would come out. If you think that your milk is too thin then you could switch bottles or after the watery fore-milk is ejected and add it back at the end until you get the right consistency. By following this protocol I was able to exclusively "breastfeed" my son for 9 months, despite the nurses saying I'd never be able to maintain my milk supply. Why would they ever try to discourage a young mother from trying her best to give her stubborn baby breast milk?

You have to be very careful with cross contamination. Most people replace toasters, waffle irons, cutting boards, wooden spoons, pasta strainers, non-stick pots & pans, all cast iron, and anything that is scratched. Replace anything that you think would be difficult to clean thoroughly. I replaced everything...slowly. Everything that I had was old hand me downs anyway. It made me realize that you can cook with less, you just have to do dishes more often. I replaced everything because I didn't want to always worry if my son's tummy ache was because of the pan I used. If you are preparing gluten you should handle it like poison. You could wear plastic gloves so you don't have to worry about gluten getting under your fingernails. You should never put gluten or any glutened utensil directly on any surface and you should wash your hands constantly or change your gloves. I also wash my gluten free dishes first. Have you made sure that all of your higiene products are gluten free, like shampoo and conditioner, lotions, TOOTHPASTE, mouthwash, hair products, etc.? My son was having occasional symptoms and I realized that it was his toothpaste. (Stay away from Oral-B/Zooth!)

I hope you feel better.

I don't know your history, but I would continue to breastfeed and I would start a gluten free diet immediately. There have been studies that show gluten can pass through breast milk. If that is the problem then hopefully your baby will start to do better soon. You should be very strict with your gluten free diet, including cross-contamination issues. You may also want to avoid other common allergens as well. I hope your little one gets better. Please keep us updated.

Thanks for the recipe. The waffles I made were "yucky."

shrimp. I don't know what kind of sauces are pink, though. sugar cookies with pink frosting.

Thanks Jenny! It's just myself and my husband so I don't think we could go through that much flour before it went bad.

Stephanie.

You can also but 3 lb bags of some flours.

Thank you both very much for your replies.

I guess I'm looking for an easy route, which I'm sure there isn't one. Grocery shopping is going to be a whole new experience for me and since I have not yet met with a dietician and don't really know what to look for on labels (nor do I have the time with 3 kids under the age of 2 to read every label in the store)...is there a list of products somewhere? I mean, I know I can go to Whole Foods or Trader Joe's or a healthfood store and get specific gluten-free products. But I'm talking about just regular food that happens to not be made with gluten, ya know?

For example...Fritos corn chips (I have no idea, just throwing it out there). If I knew that of all the chips in the chip aisle, these were safe to eat, it would just make the first few shopping trips until I can meet with a dietician so much easier.

Thanks again.

Frazzled,

ETA - I just came across this site... Open Original Shared Link

Is this pretty accurate?

That list is pretty old. Manufacturers can change the ingredients at anytime. That's why it's best to stick with companies that will clearly list their gluten. (See the link I just posted.) If you really feel that you need a list right now, I can email you one updated 2/07 if you send me a private message with your email address.

Welcome!

I hate to be the one to break it to you...but life is going to change majorly. I'm a college student with a young son and we used to eat out a few times a week before he was diagnosed. I don't feel that it's safe to eat out at those places anymore. Some people eat some items at Wendy's and other places, so it's best that you go to the websites or call the restaurants. The Outback and PF Changs have gluten-free menus.

What you can eat? I suggest that you do a search on this forum for words like "normal foods" and "favorite." By the way, this is the best place for information. There are many normal foods that you can eat. The best thing to do is stick with the companies that will clearly list their gluten. Some of the big companies are Kraft and General Mills. Each of these companies includes many brands. I will post a link to a list of companies that will list their gluten. Hormel has a gluten free list on their website, and some of their convenience foods are included. Call all other companies to find out if their food is gluten free if they do not clearly list their gluten. You must read every label every time. Things to watch out for are natural flavors, spices, thickeners, broth, and some watch for modified food starch.

There are many tasty gluten free specialty foods. I'll list some popular brands and then you can do searches for them to see what they offer: Kinnikinnick, Glutino, Ener-G, Tinkyada, Gluten Free Pantry, Pamela's, and Health Valley. You can buy gluten free cookies and brownies, etc, but it's much cheaper to make your own.

I convert old recipes by using 3 parts white rice flour, 2 parts potato starch, 1 part tapioca flour/starch, and 1 tsp xanthan gum for every 1.5 cups of flour. In addition to those flours I would pick up brown rice flour, potato flour, corn starch, almond or flax meal, and a bean flour like garfava. I bread meat for frying in a mix of white rice flour and and corn starch. glutenfreeda.com has lots of great gluten free recipes. Many websites like allrecipes.com and recipeszaar.com also have gluten free recipes. Mostly I just convert regular recipes to gluten free using the formula given above.

You should also search for cross contamination. That is an issue in itself.

Although it seems very complicated now, it will get much easier.

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I know that you can order Bob's Red Mill flours in 25 lb bags online or by mail order. I don't really like many of their pre-made mixes, but I love buying their flours. I'm fortunate to live near their store, so I always go there to buy in bulk. Their mixed gluten-free flour is $34 for 25 lbs, white rice flour is $17.80 for 25 lbs and tapioca flour is $29.25 for 25 lbs. This is how I buy the flours that I use most often. I do a lot of baking and it really saves money to buy in bulk in the long run. I think it's a waste of money to buy things that I can easily make like cookies, cakes, and brownies. I may just change my mind when I start graduate school though.

THANKS! I will have to see if I can find the list.

Here's the list. I bookmarked it. Thanks to who ever posted it! I called all the companies and I suggest that you do the same. One of the companies (Blue Bunny???) just did not have products that contain gluten, but they did not have a gluten policy. Everything on the list was fine, but it's always a good policy to call yourself.

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It's unlikely since the growth plates in your bones should have closed years ago, thus preventing further growth. Perhaps you feel better and it is reflected in your posture! Sorry to be the bearer of bad news, but I'm glad that you're feeling better.

I use any flour. Usually rice or my premade flour mix which consists of rice flour/potato starch/tapioca starch. Anything that will thicken and not leave a bad taste (Bob's Red Mill gluten-free flour).

Nestle chocolate chips are gluten free. They will clearly list gluten, so always check the labels.

Hi JennyC,

How desperate are you, for good edible bread that you don't need to toast ?

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That doesn't taste like re - constituted sawdust and

you can eat quite happily dry (that's right no butter no spread)

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You will have to think differently about bread making (making it from scratch)

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No flour blends ! No shorgum! no Flax (yes it can be really simple to do)

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Using ground rice, tapioca flour (tapioca starch), brown rice flour, cornflour (cornstarch)

Ground almonds (Almond Meal).

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If you can get these easy enough + a few regular ingredients (then you can do it?)

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Brand names in brackets can be ignored, they are required by the Irish Coeliac Society

to show that the ingredients are vetted

and are 100% free from any possible cross-contamination

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These are links to 2 bread recipes of mine.

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Try them I don't think you will be disappointed!! (what have you got to loose)

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Open Original Shared Link

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Open Original Shared Link

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Good Luck with the bread, if you do make the bread, let me know what you think (good or bad)

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Best Regards,

David

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P.S. if you want to look at all my recipes scroll to the end,

it says jump to gluten free recipes and press go.

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Hope it helps!

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I don't have a food scale, so I can't really do the measurements. I've been wanting to get one though. DO you happen to know the measurements in cups or tablespoons?

Thank you. I will be trying lots of new things. Hopefully I will not continue to go mad!

I have not found a prepared mac & cheese that I like. I do really like this recipe from glutenfreeda.com. This site has tons of great gluten free recipes, you should check it out. I usually double the batch and freeze the left overs in portions just right for my son. Then I use them for a quick lunch, or like tonight when we're invited to a barbecue and I'm unsure of the gluten status of side dishes. (He'd much rather have mac & cheese than potato salad anyway. )

Macaroni & Cheese

Servings: Makes 4 servings.

Difficulty: Easy Ingredients

2 Tablespoon butter, (1 Tablespoon reserved for topping)

2 Tablespoon gluten-free bread flour

3/4 cup milk

1/8 teaspoon dry mustard

1/4 teaspoon kosher salt

1 cup cheddar cheese, grated (plus 1/4 cup for topping)

2 cups dry gluten-free rice macaroni noodles or spirals

Directions

Preheat oven to 350

Thanks for the input. I do use a grey non-stick pan already. I will try the adjustments on the recipe given by AndreaB. If anyone has more ideas please keep them coming! (My son does not like the Kinnikinnick bread either.) All advice is greatly appreciated!

I have been attempting to make the flax bread recipe for months, but it never turns out right. It will only rise to about a half inch below the pan and then it sinks a little on the top and bottom while it cools. I read the 17 page thread on this bread trying to fix the problem, but nothing works! I make a couple loaves per week trying to get it right!!!For my gluten free mix I usually use a 50/50 mix of amaranth flour and rice flour, but I have also tried the rice/potato starch/tapioca flour mix as well. My yeast is only a couple months old and is Red Star active dry yeast. I always let my yeast, eggs and milk come up to room temperature. I let the bread rise for hours before I give up. I have tried increasing the yeast by 25%. I have tried to decrease the liquid. I have let in rise in a warm oven and in a window sill. I make sure that I bake it for 40 min even if I have to give it a foil tent toward the end. I let it cool in the pan a bit before transferring it to a wire rack. After all that I have tried...I still have to serve my son 3 inch tall bread!!! I don't get it! What am I doing wrong?! My son hates store bought gluten-free bread. I just want to make him the best bread possible. Do others have this problem? Does anyone have any suggestions? Any help would be MUCH appreciated...I'm going crazy trying to get this right. Although, I do have quite the stock of gluten free bread crumbs.

Here's the link to the recipe:

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Thank you!

I made the following recipe, and they were good. They tasted like real corndogs!

Corn Dogs

Source: Randall Wade, Gluten-free Casein-free Kids, Yahoo Groups

1/2 cup Gluten-free Casein-free flour blend (I use Bette Hagman blend)

1/2 cup cornmeal

1/2 tsp. xanthan gum

1/2 tablespoon sugar

1/2 tsp. baking powder

1/2 tsp. salt

1 egg, beaten

3/4 cup milk substitute

Gluten-free Casein-free hotdogs (I use Bar-S)

Mix the dry ingredients together. Add the wet ingredients until smooth. Cut each hotdog in half, and dry thoroughly with a paper towel (this will help the batter stick to the hotdogs). Dip each hotdog piece in the batter. Deep fry until golden brown. Drain on paper towel.