JennyC

What are entero tests? I don't want my son to get a biopsy. He's already had the blood work done.

Thanks.

Just remember that the longer he's gluten free the harder it will be to get a biopsy diagnosis. You may only have a window of a few weeks.

Also, what about asking for follow up testing of his ttg on the gluten free diet to confirm it goes down. Seems like that should contribute to the large, growing pool of evidence.

Yes, I do want to get more blood work done. I expected that at his appointment, but all I got was a lecture. I will definitely request it at his next appointment.

Thank you for your advice.

Thank you for the encouragement. My son has been gluten-free for one month and has made a complete turn around. He has already gained weight! Now we're in the process of finding a good doctor. Your story makes me look forward to what is to come.

You just have to read the labels. Print off the forbidden ingredients list from this website and take it with you to the store. My grandmother (bless her) bought a regular ham from Safe Way that doesn't appear to have any gluten in it. The spiral cut ones had wheat flour added, so be careful.

Happy Easter

Thank you all so much for your support. I really hope that people with other diseases have a similar resource. Without you all I would probably be cross contaminating my son and feeding him malt-filled rice crispy treats!

I'm concerned about getting the official diagnosis only because I want him to be supervised by a specialist as a celiac patient, so that he will get the appropriate follow up care and be watched for symptoms of other diseases associated with celiac disease.

If when he's older he decides that he might not have celiac, then he can make the choice for himself to go back on gluten and get a biopsy.

I know there are doctors out there who will diagnose without a biopsy, and I intend to try to find one. If I'm not successful, then I will go through his pediatrician for follow up testing.

My son's pediatrician ordered a full blood panel on my son and it turned out that he had very high tTG levels. He also has had all of the classic celiac symptoms: diarrhea 3+ times a day, abdominal bloating, failure to thrive, lack of appetite, ect. She told me that he has Celiac disease, remove gluten from his diet & to see a pediatric GI. After removing gluten all of his symptoms disappeared--I mean a complete turn around! (He's even gained 3 lbs in the last month!) Well yesterday was the big appointment. I expected him to push for a biopsy, but he spent the entire time trying to convince me to do it. Everything that the GI told contradicted what I have learned thus far.

In his opinion biopsy is the only way to diagnose Celiac disease. He said that high tTG levels could be caused by other diseases. (He couldn't name any & when I googled it all I came up with was Celiac disease.) He said that celiac disease is not a spotty disease--he always finds it in one spot. If he doesn't find it in that spot during the first and only biopsy performed, then one doesn't have celiac disease and the blood work was falsely positive. Then from that point a gluten-free diet is entirely elective.

It seems as though he was educated in the stone ages. I've read of people being diagnosed as Celiac without a biopsy, with a negative biopsy, and after multiple biopsies. My son had all the symptoms of celiac disease, he had the celiac-specific blood markers, and he couldn't be responding any better to his new gluten-free diet. I don't want to put him through hell for an entire month for a biopsy! I will be seeking a second opinion by another doctor at a different hospital!

Please share your insights. Any input will be greatly appreciated.

Tomorrow is the big day. I've been trying to come up with a list of questions to ask the GI. From what I've read here it seems that many doctors are not Celiac competent. I want to be sure that I touch on all bases. There's nothing worse than getting home from the doctor and realizing that you have more questions! I want to get as much out of this visit as possible.

Thank you for all the ideas!

Good for you! We as parents need to be the best advocate for our children. I wish you the best of luck with your new situation. I think I will try your laminated paper idea when my son starts school. Thanks for the idea!

No meat should contain gluten. When an animal consumes gluten, its digestive enzymes break it down into short sequences of amino acids before it can be absorbed into the animal's bloodstream. (Which is also what happens in humans that are not intolerant to gluten or who do not have Celiac disease.) From there, the animal uses those amino acid to build the proteins specified by their genetic code. Many of these proteins are similar to those of humans, such as muscle proteins, ect. Beef may have a more dense protein concentration or have a higher fat content, or some other factor that makes it more difficult for your daughter to digest.

Hope this helps!

Thanks everyone! I really want to use my old sugar cookie recipe for Easter, and I'm going to try one of the methods--I'm just not sure which one. (I'll probably end up trying them all eventually! .)

Keep in mind that "gluten free" is ALL about ingredients, not processing facility. If you're sensitive enough that you have to avoid items made in shared facilities, then you absolutely must always read the packaging.

Most of us make all our regular meals in shared facilities - if the other members of your household have ever brought in something with gluten to your kitchen, it would make all the food you prepared in there "made in a facility that handles wheat" (by food processing standards). That's not to say that there's no reason to worry and sometimes avoid, but I think it helps to put things in context.

(Heh... if you want to use the analogy "processed in a facility that handles rat poison"... well, many of them probably use some varieties of pesticides. Now I'm curious! )

Thanks for the perspective. I'm new to all of this. I think I bought similar crackers for my son. I almost threw them away when I saw that they were made in a shared facility, but I thought that most "normal" food is most likely manufactured in a shared facility (and our home cooked food). I'm not planning to be that restricting on his diet unless his medical condition warrants it. Until then, I'm letting the poor kid have his Cheetos!

I have a large assortment of gluten-free flour ( Bob's RM gluten free all purpose, white rice, brown rice, tapioca, potato, garbanzo, fava, and full fat soy flour). I think that the brown rice flour leaves a funny aftertaste? I'm new to this, so I am asking those with gluten-free baking experience for their wisdom. I plan to make gluten-free sugar cookies this week, and I would like them to turn out good. Also, does anyone know a good way to covert old recipes to gluten-free? I have some great recipes, and I don't want to totally start from scratch to rebuild my recipe collection!

Thanks

My son was just diagnosed a couple of weeks ago, and he is also small for his age. He was a large baby, but after I quit breastfeeding him at 9 months, his growth rate began to rapidly decrease. Now at 3 1/2 yrs old he only weighs 31 lbs and is 37 in tall. (He's only gained 1 lb since his birthday in August.) I am desperately hoping that he goes through a major growth spurt! He's eating like crazy now, so hopefully it won't be long.

I would find a new childcare provider ASAP. It sounds like your child's provider doesn't take you or Celiac disease seriously. That is not ok. You need to feel good about who you leave your child with. If you work full time, then your child is spending a significant part of life there. There are childcare providers out there who will respect you and be diligent with the Celiac diet. My son's childcare provider is FANTASTIC! She would never gluten my son, or let him gluten himself. There is a better childcare provider out there. It sounds like you need to start looking. Your state should have a list of state-certified providers. Get the list and start calling! Once you find a better provider, it will be a huge relief.

Thanks everyone. I'm going to try the New York style pizza crust tonight. If all goes well, then I'll most likely make it again the morning before the party and take our own pizza. I already have frozen cupcakes. It's a good thing that I have a big purse! This is the first gluten party of many to come. I might as well dive right in!

The ingredients in the ham sound fine. Just sugar and preservatives. I am new to gluten-free cooking, but for graham cracker crusts I plan to make gluten-free graham crackers and smash them. Sounds like a lot a work, so I'll probably make lots and store the crumbs in an air tight container. There's a recipe in one of my cookbooks, but I haven't tried it yet. If you try it, please let me know how it turns out!

3/4 cup margarine or butter

1/4 cup honey

1 cup brown sugar

1 tsp xanthan gum

1 1/2 tsp salt

1 tsp ground cinnamon

2 1/2 tsp baking powder

1 tsp vanilla

1 cup light bean flour (Garfava, full fat soy, or garbanzo)

1 cup tapioca flour

1 cup potato starch flour

1/4 cup sugar (optional)

1/2 tsp ground cinnamon (optional)

In a large bowl beat together margarine/butter, honey, and brown sugar. Add xanthan gum, salt, cinnamon, baking powder, and vanilla. Beat to combine.

Add the flours, 1/2 cup at a time, beating after each addition. If dough gets to tough, add water 1 tsp at a time, until dough is creamy, yet managable.

Lightly oil cookie sheet. Scoop dough 1 tsp at a time onto the cookie sheet and spread until it is 1/4 to 1/8 inch thick.

Combine optional cinnamon and sugar and sprinkle on crackers, if desired.

Bake at 325 degrees for 25-30 min. Immediately remove crackers to a cooling rack to prevent them from breaking.

(Makes 90 2-inch crackers.)

I believe that the Celiac Sprue Foundation does (celiac.org I think). It costs about $40. I haven't bought it because ingredients often change and I have regular access to the internet. Food companies will often give you a list of gluten-free products if you call them...or they will tell you that they plainly listed with the ingredients are clearly listed.

Thank you all for your input. It's nice to hear what others have say. It really helps me clarify what I should do.

I contacted Heinz yesterday to see if my favorite barbecue sauce was gluten-free--and it wasn't . But they did email me a list of their gluten-free products. I thought I would post for those who are new to the gluten-free lifestyle, and for those who are not there are some pleasant surprises, such as Jack Daniel's marinades.

HEINZ PRODUCTS:

Heinz Ketchup (All Varieties)

Heinz Organic Ketchup

Heinz One Carb Ketchup

Heinz No Sodium Added Ketchup

Heinz Hot & Spicy Kick'rs

Lea & Perrins Products-- All Varieties

Jack Daniel's EZ Marinader -- Teriyaki Variety

Jack Daniel's EZ Marinader -- Garlic & Herb Variety

Distilled White Vinegar

Red Wine Vinegar

Apple Cider Vinegar

Apple Cider Flavored Vinegar

CLASSICO PASTA SAUCES:

All Classico Pasta Sauces

TGI FRIDAY'S SALSA:

Both Mild and Medium Salsa in 16-ounce jar

DELIMEX PRODUCTS:

UPC CODE: PRODUCT NAME:

1769600012 Taquitos, 36 ct. Delimex Chicken

1769600018 Tamales, 12 ct. Delimex Beef

1769600019 Tamales, 12 ct. Delimex Chicken & Cheese

1769600020 Taquitos, 24 ct. Smart & Final Beef

1769600024 Tamales, 6 ct. Delimex Beef

1769600028 Taquitos, 25 ct. Delimex Beef

1769600029 Taquitos, 25 ct. Delimex Chicken

1769600048 Taquitos, 36 ct. Delimex Beef

1769600095 Taquitos, 12 ct. Delimex Beef

1769600096 Taquitos, 12 ct. Delimex Chicken

1769600133 Taquitos, 22 ct. Schwan's Beef w/ Salsa

1769600155 Tamales, 15 ct. Costco Beef

1769600159 Tamales, 20 ct. Delimex Beef, Costco

1769600180 Taquitos, 60 ct. Delimex Beef

1769600186 Taquitos, 60 ct. Sam's Club Beef

1769600206 Tamales, 2 ct. Trader Joe's Beef

1769600207 Tamales, 2 ct. Trader Joe's Chicken & Cheese

1769600214 Taquitos, 25 ct. Delimex 3-Cheese

1769600222 Tamales, 6 ct. Schwan's Beef

1769600481 Taquitos, 36 ct. Delimex Beef (Mexico Import)

1769600500 Taquitos, Delimex Beef / Deli-Pak

1769600505 Taquitos, Mini, 40 ct. Beef, Snacker Tray w/ salsa

1769600554 Tamales, Cheese Deli Bulk Pack

1769600555 Tamales, Chicken Deli Bulk Pack

1769600556 Tamales, Beef Deli Bulk Pack

1769600565 Tamales, 20 ct.Beef, Sams Club

1769600684 Taquitos, 66 ct. Costco Beef

1769600685 Taquitos, 66 ct. Costco Chicken

1769601208 Tamales, 2 ct. Trader Joe's Cheese & Green Chiles

ORE-IDA PRODUCTS:

UPC CODE: PRODUCT NAME:

13120XXXXX- ALL VARIETIES of Ore-Ida

We got a one week notice of a double birthday party this weekend. The first half is at a bounce around place and the second half is at a pizza place. My original plan was to go to the first half, and then go home as the others leave to go to the pizza party. I started thinking that there would probably lots of talk of the pizza place at the party and the 1st half of the party will most likely end by someone yelling "Let's go to the pizza place now!" I don't know what I should do! I don't want to isolate my son. I already have frozen cupcakes for unexpected parties, but I don't have any tasty pizza crust recipes. (So far all my attempts at pizza have not been very good.)

I read the the Americans with Disabilities Act applies to Celiacs, so they can bring their own food if the establishment doesn't provide a reasonable gluten-free menu. Any input?

Does anyone have a pizza recipe that is actually good, so my son will be happy with his "special pizza"? (I know good recipes have to be out there!)

Should I go in the first place? I think that I probably should. I just don't want him to feel bad.

Allergy testing doesn't cover intolerance. It's possible that your child is lactose intolerant, especially if this is a new diagnosis. I'm in the early stage with my son, so I give him soy products when possible. I do give him dairy cheese, but I give him half of a Lactaid first. This seems to work well, and he's less deprived of the foods he loves. I've been told that there is a breath test for lactose intolerance. I plan to have my son tested after he has been gluten-free long enough for his intestines to heal.

Thank you so much for the recipe! I'm new at gluten-free baking, and last night was my first attempt to make corn bread. It was too fluffy and kind of bland. A good recipe is much appreciated.

I use Disney's Finding Nemo toothpaste for my son. It has lots of chemicals, but nothing that seems like it would contain gluten. Although I must say the ingredients list is crazy .

Sounds good! I'll definitely try it. Thanks for the recipe.

Day three is really tough. I'm just about to week three with my son. We are adjusting well. We bought a NEW TOASTER. You have to buy one because toaster crumbs are endless. We bought a small selection of pots, pans, cutting boards, baking sheets, and utensils.

We also bought tons of new food. Reading these message boards was extremely helpful in helping me figure out the foods that he could eat. We live by Bob's Red Mill so we went there and bought lots of gluten-free baking ingredients and mixes. Xanthan gum is a big one. Different recipes call for different flours and starches. I'm sure that many must be interchangeable, but for now I want to experiment to find the best ones. There are many cook books and Internet recipe sites that can help with recipe ideas.

Meat can be gluten-free by avoiding gluten spices and marinades. (Some soy sauces do not contain wheat, such as Kroger brand.)

Potato side dishes are fine. Glutino makes good gluten-free gravy or you can make your own using gluten-free flour/corn starch.

gluten-free pasta with marina source (Newman's own has many gluten-free options under their FAQ section on their website.) I also learned it's easy to make your own pasta sauces...really!

There's lots of gluten-free dinner bread recipes, and Kinnikinnick makes good gluten-free products, including dinner rolls.

Corn tortillas

Many potato chips, original Frito's, corn tortilla chips, Cheetos, and Doritos (white cheddar?) chips.

There are lots of gluten-free cereal, including some "normal" cereals such as fruity & cocoa pebbles, Trix?, some brands of corn flakes, and Dora stars cereal, and some Disney cereals, such as Mikey Mouse and Little Einsteins. (Watch for malt-flavoring!)

There are also lots of gluten-free cookies and crackers, some good brands seem to be Glutino, Pamula's, and Kinnikinnick.

I've read that Dove chocolate, many candy bars, and many say that Hershey's in also gluten-free. (Marshmallows are ok too.)

Pamula's baking mixes are pretty good. Dunken Hiens (sp?) frosting is gluten-free.

Kinnikinick white sandwich bread or Ener-G light Tapioca bread.

Some salad dressings are ok. Hidden Valley Ranch MIX is gluten-free.

Overall, Kraft is a trust worthy brand, it'll clearly list gluten indredients.

Above all read the ingredients on every label every time.

I wish you the best. It's hard to get used to, it does get much easier.