Feeling Overwhelmed

[Silver]

I am new to the site and have read through many ove the posts. There is so much that needs to change that I am overwhelmed. Is the a "Celiac for Dummies"?

A year ago my DD was told that she tested negative for Celiac and positive for a sensitivity to wheat and milk. Fo some reason I decided to have her re-tested ta couple of weeks ago. The results came back negative for wheat, milk + other allergies, but positive for Celiac. With just a sensitivity I was never particularly diligent or ultra-conscerned about cross-contamination. Now, if Celiac is confirmed, I guess that I will have to be.

Questions:

1) After a Iga and Igg blood test, and a referral to a pediatric GI, what can I anticipate? We can't be seen until the end of March, so answers are nowhere near enough.

2) Is the intestinal villus test the "gold standard" for diagnosing Celiac, or are the blood tests enough of an answer that I shouldn't have to put her through the intestinal test?

3) Where can I find a definitve list of the foods to avoid, and assistance for label reading?

4) I have 3 other children. Do I de-gluten the whole house?

5) How difficult is it to re-train your palate to heavier grains?

6) Do you make your own flour mixes for baking use? Store-bought mixes are so expensive.

7) How important is it to have breads or grains in her/our diet?

8) Can the "fluffiness" of American baked products/breads be duplicated in any way?

9) I never thought of PlayDoh until I read another post. Are there any other "hidden" glutens that I should be aware of?

10) Right now dinner consists of chicken and rice or tacos/taco salad. My kids are not very adventuresome and anything that doesn't look "right" to them they won't eat. I can't define "right" it is their whim. Someone always seems to refuse to eat dinner. Suggestions?

11) I understand that it is genetic, and I am assume that it is a recessive gene. Should I consider having my other children tested?

Thank you.

Tamara

[Luvs to Scrap]

Hugs and welcome to the forum. My DH has been on the gluten-free diet since Oct 2005 and my DS since last June. I am by no means an expert but I will try to answer some of your ?s. If you want a recipe let me know. The first couple months were the worst for me. It does get better although I still have my days! Right now I am adjusting to the shock that i need to remove soy and casein from my DS diet.

Is the intestinal villus test the "gold standard" for diagnosing Celiac, or are the blood tests enough of an answer that I shouldn't have to put her through the intestinal test? Unfortunately that is still considered the gold standard for most doctors. We started our DS on the gluten-free diet after just the blood test--didn't want to put him through that. He has been doing better. we just finished doing the genetic and stool testing from enterolab and discovered he is also intollerant to soy and casein(dairy) so we have some other diet changes to implement now and hopefully that will help him to be even better. If you are planning on having the scope done you need to keep daughter on regular diet until after the scope. If you want to use enterolab you can still get accurate testing done even on a gluten-free diet.

Where can I find a definitve list of the foods to avoid, and assistance for label reading? Danna Korn's book Raising a Celiac Child is awesome. I also have read Wheat Free Worry Free by Danna Korn and The Comprehensive Guide to the gluten-free Diet by Shelley Case. The Gluten Free Gourmet cookbooks by Bette Hagman all have helpful tips at the front if you can find one at the library.

I have 3 other children. Do I de-gluten the whole house? You don't have to. Raising the Celiac Child addresses this. There are pros and cons to either way. You do need to be VERY careful about cross contamination and not letting daugher's food touch anything with gluten--even a crumb. We started out cooking my DH separate food but by now with DS and DH on the diet I make nearly all parts of the meal gluten-free with my DD and I occasionally having flour tortillas instead of corn. It was just easier for me to make one meal--also DD is almost 2 so she is also "sharing" her crumbs with others.

How difficult is it to re-train your palate to heavier grains?

It takes time but it can be done

Do you make your own flour mixes for baking use? Store-bought mixes are so expensive.

I buy my flour and then make up my own flour mixes. I use Bette Hagmans Gluten Free Mix, Bette Hagman's Featherlight Mix and Bette Hagman's Four Bean Flour Mix. I use brown rice instead of white rice flour. I also have a mix for bread and muffins that I just add a few ingredients to when I am ready to bake.

Can the "fluffiness" of American baked products/breads be duplicated in any way?

I made some biscuits that takes fluffy even though they look like hockey pucks.

Right now dinner consists of chicken and rice or tacos/taco salad. My kids are not very adventuresome and anything that doesn't look "right" to them they won't eat. I can't define "right" it is their whim. Someone always seems to refuse to eat dinner. Suggestions?

My kids are sometimes that way too. My mom told me that if i have food made that is safe and appetizing to eat and they choose not to eat it it is their problem. They will eventully get hungry and usually my kids will eat part, sometimes most and once in awhile all of their meal. I just try to offer a variety and have at least one thing I know they usually like.

I understand that it is genetic, and I am assume that it is a recessive gene. Should I consider having my other children tested?

Yes and you and your husband should be tested too. take care. Kendra

[rez]

I would DEFINITELY do the biopsy. Since Celiac is genetic, it's important to know if the rest of your family should be screened. The biopsy shows exactly what's going on inside and it's important to know what progress is made and if the intestines improve over time. Also, Celiac is a life long disease. Your child has another 80 years plus to deal with this. Also, it's important to have good follow up care since Celiac can go along with other conditions. I think that it's nice to have a good medical professional, notice I said GOOD, in your corner. It makes our job as parents MUCH easier. Good luck! The bloodwork is pretty specific to Celiac, but not 100%. I notice you mentioned IGA and IGG. Did your child have the tTG or EMA? Those are the two BEST markers for Celiac.

[rez]

PS Usually a GI will not scope without a positive tTG. Check the bloodwork to see if this was run. If it wasn't, I'm sure your GI will run one. Also, don't start a gluten free diet before the additional blood work or biopsy. Then, you'll have to do a gluten challenge. Trust me, as a parent, you don't want to do this. We are in the process of one right now. My son had a positive tTG after being on a gluten-free diet for 3 months. I've also read that other things can make the tTG false positive for Celiac. A casein intolerance or some other type of autoimmune condition. I want to know FOR SURE and that's why I'm trying to get those answers from the biopsy. Of course nothing is 100%, but I think it's important as parents that we do our best to get as many answers as we can. Again, good luck!

[Kibbie]

There is actually a "Gluten free living for dummies" and I really thought the book was helpful! It was a quick and easy read!

[mouth]

I am new to the site and have read through many ove the posts. There is so much that needs to change that I am overwhelmed. Is the a "Celiac for Dummies"?

A year ago my DD was told that she tested negative for Celiac and positive for a sensitivity to wheat and milk. Fo some reason I decided to have her re-tested ta couple of weeks ago. The results came back negative for wheat, milk + other allergies, but positive for Celiac. With just a sensitivity I was never particularly diligent or ultra-conscerned about cross-contamination. Now, if Celiac is confirmed, I guess that I will have to be.

Questions:

1) After a Iga and Igg blood test, and a referral to a pediatric GI, what can I anticipate? We can't be seen until the end of March, so answers are nowhere near enough.

2) Is the intestinal villus test the "gold standard" for diagnosing Celiac, or are the blood tests enough of an answer that I shouldn't have to put her through the intestinal test?

3) Where can I find a definitve list of the foods to avoid, and assistance for label reading?

4) I have 3 other children. Do I de-gluten the whole house?

5) How difficult is it to re-train your palate to heavier grains?

6) Do you make your own flour mixes for baking use? Store-bought mixes are so expensive.

7) How important is it to have breads or grains in her/our diet?

8) Can the "fluffiness" of American baked products/breads be duplicated in any way?

9) I never thought of PlayDoh until I read another post. Are there any other "hidden" glutens that I should be aware of?

10) Right now dinner consists of chicken and rice or tacos/taco salad. My kids are not very adventuresome and anything that doesn't look "right" to them they won't eat. I can't define "right" it is their whim. Someone always seems to refuse to eat dinner. Suggestions?

11) I understand that it is genetic, and I am assume that it is a recessive gene. Should I consider having my other children tested?

Thank you.

Tamara

Tara,

Hi, this is new to me too. my daughter finally got a difinitive answer after years. Her blood levels kept coming back elivated, but biopsies were negative. Suddenly she gained alot of weight, and all of a sudden her numbers shot up and the new biopsy came back "in the grey area" meaning, possible, if the blood work was positive. MOst of your questions I can't answer. One thing I can tell you is if you get a good nutritionist, they can give you a list of safe, stuff to avoid and defiite no no's. on food additives and foods to eat. read everything, send emails to companies, call them, etc. My daughters regular doctor had me check out all medications that she takes, because they may have "something they cant have in the binding agent." All the pharmacutical comapnies were very happy to help.. Even most food companies will help. I sent a letter to heinz and they sent me an entire list of stuff that is gluten free. my daughter is a very picky eater.. will only eat nuggets. no other meat. so for her its hard because her diet is a big must change. I have been told that this can be heriditary and can skip generations, so yes you should get the other kids tested. My doctor tested me, and I was ok. But like I said, go to Heinz.com and send them a letter, they were great!!!!!!! answered right away!!!! I get store bought. I can't afford to go on line to buy. Buy I am lucky there is a store by me that sells lots of gluten-free foods. Good luck..

[mouth]

PS Usually a GI will not scope without a positive tTG. Check the bloodwork to see if this was run. If it wasn't, I'm sure your GI will run one. Also, don't start a gluten free diet before the additional blood work or biopsy. Then, you'll have to do a gluten challenge. Trust me, as a parent, you don't want to do this. We are in the process of one right now. My son had a positive tTG after being on a gluten-free diet for 3 months. I've also read that other things can make the tTG false positive for Celiac. A casein intolerance or some other type of autoimmune condition. I want to know FOR SURE and that's why I'm trying to get those answers from the biopsy. Of course nothing is 100%, but I think it's important as parents that we do our best to get as many answers as we can. Again, good luck!

Hi what is casein? I am new to this stuff and dont know half of what any of you are talking about.

mouth How do you know what questions to ask??

[tarnalberry]

1) After a Iga and Igg blood test, and a referral to a pediatric GI, what can I anticipate? We can't be seen until the end of March, so answers are nowhere near enough.

It really depends. There isn't a really really standard process here. Most likely, they'll want to do a biopsy.

2) Is the intestinal villus test the "gold standard" for diagnosing Celiac, or are the blood tests enough of an answer that I shouldn't have to put her through the intestinal test?

Depends on the doctor. Most likely, they'll want the biopsy, though it's possible to test positive on the blood tests, negative on the biopsy, and still have celiac because the biopsy missed it.

3) Where can I find a definitve list of the foods to avoid, and assistance for label reading?

On the left of the screen is a site index link that will take you to the safe/unsafe list that is very helpful, but there is not *truely definitive* list. Things just are not black and whilte. And this board is a great help in label reading, but the biggest help is your phone in calling the company.

4) I have 3 other children. Do I de-gluten the whole house?

Your choice, but a lot of us find that to be easier. It depends on the kids, your resources, your current habits, and a number of things.

5) How difficult is it to re-train your palate to heavier grains?

Depends on what you eat now. I didn't make much of any changes, other than removing a few things. Brown rice was already my preference, and quinoa isn't heavy. If you only eat refined flour based products, it might be different.

6) Do you make your own flour mixes for baking use? Store-bought mixes are so expensive.

Usually, though I generally go with a premade mix for pancakes so my husband will like it too.

7) How important is it to have breads or grains in her/our diet?

Breads? Not at all. Grains? Eh... Only important if you don't know how to balance out the diet for what is provided by them. They are *not* essential, as their nutrients can be found elsewhere, often times more efficiently. But they're familiar. Vegetables and fruits can provide all the carbs and fiber you need.

8) Can the "fluffiness" of American baked products/breads be duplicated in any way?

Not easily. But it's only one thing you eat right now... There are a lot of other things that can be had instead.

9) I never thought of PlayDoh until I read another post. Are there any other "hidden" glutens that I should be aware of?

Oh yes. Besides contamination from shared toasters, wooden spoons, and collanders, there's lotion, shampoo, and other toilettries. There's pretty much anything you get your hands on regularly becaues your hands go in your mouth. Keep reading around here. A new one will surprise you every now and again.

10) Right now dinner consists of chicken and rice or tacos/taco salad. My kids are not very adventuresome and anything that doesn't look "right" to them they won't eat. I can't define "right" it is their whim. Someone always seems to refuse to eat dinner. Suggestions?

Keep trying, keeping presenting them with new things, and keep them involved in helping them decide what new thing makes it to the table. Take variations on the theme that you've got and expand it - chicken and rice as a stir fry - then add a vegetable; taco salad, then add beans and other veggies, then go with a different meat. Etc. One-offs sort of thing.

11) I understand that it is genetic, and I am assume that it is a recessive gene. Should I consider having my other children tested?

I would. Yourself as well.

[Silver]

Thank you for all of your responses. We are changing the house to a gluten-free home so that she has a "safe"place, and so that cooking isn't as crazy as it currently seems. I am also going to have everyone else tested.

The allergists did an Igg and an Iga. Igg was elevated and Iga normal. No other tests at thip point.

Tamara

[rez]

those test ARE NOT specific to Celiac at all. Before you go gluten free, please have your doctor run a tTG and an EMA. Those tests you mentioned aren't even used anymore to screen for Celiac. Get the proper testing done or going gluten free will make the results false negative.

[gfp]

This more or less says everything so I thought I'd just add my 2c to it....

1) After a Iga and Igg blood test, and a referral to a pediatric GI, what can I anticipate? We can't be seen until the end of March, so answers are nowhere near enough.

It really depends. There isn't a really really standard process here. Most likely, they'll want to do a biopsy.

2) Is the intestinal villus test the "gold standard" for diagnosing Celiac, or are the blood tests enough of an answer that I shouldn't have to put her through the intestinal test?

Depends on the doctor. Most likely, they'll want the biopsy, though it's possible to test positive on the blood tests, negative on the biopsy, and still have celiac because the biopsy missed it.

3) Where can I find a definitve list of the foods to avoid, and assistance for label reading?

On the left of the screen is a site index link that will take you to the safe/unsafe list that is very helpful, but there is not *truely definitive* list. Things just are not black and whilte. And this board is a great help in label reading, but the biggest help is your phone in calling the company.

4) I have 3 other children. Do I de-gluten the whole house?

Your choice, but a lot of us find that to be easier. It depends on the kids, your resources, your current habits, and a number of things.

The biopsy or not is a personal choice and dependent on your MD and history... their knowledge of celiac disease etc. etc.

Its a mine field with no perfect answer... it depends if your present MD is up on it and if not if you want to educate him/her yourself or find one pre-educated... and even if your MD is willing to get educated...

5) How difficult is it to re-train your palate to heavier grains?

Depends on what you eat now. I didn't make much of any changes, other than removing a few things. Brown rice was already my preference, and quinoa isn't heavy. If you only eat refined flour based products, it might be different.

I find it also depends what you eat with them.... the more adaptive you are to what you combine with the grains ... for instance if you try and recreate a wheat based dish its often dissapointing and doesn't hit the mark but if you start with an essentially gluten-free dish its not trying to compete with your memory...

6) Do you make your own flour mixes for baking use? Store-bought mixes are so expensive.

Usually, though I generally go with a premade mix for pancakes so my husband will like it too.

My take is I just minimise the amount of replacement products.... when you are using them sparingly then the price is less important.

Some stuff just owrks better....meatloaf can be just as good IMHO because the gluten-free bread is already half stale... I have a freind who after trying gluten-free meatloaf now buys gluten-free bread for her normal meatloaf ??? Also stuff that's heavily oil based like carrot cake seem to work better than normal "cakes"

7) How important is it to have breads or grains in her/our diet?

Breads? Not at all. Grains? Eh... Only important if you don't know how to balance out the diet for what is provided by them. They are *not* essential, as their nutrients can be found elsewhere, often times more efficiently. But they're familiar. Vegetables and fruits can provide all the carbs and fiber you need.

I agree here, it really depends on how much effort you put into balancing the diet anyway....90% of Americans and Europeans don't ever think about this and have a poor diet anyway.. largely because we can afford to whereas in poor countires people are really struggling to get their nutrition and tend to think about it more.

8) Can the "fluffiness" of American baked products/breads be duplicated in any way?

Not easily. But it's only one thing you eat right now... There are a lot of other things that can be had instead.

Yep sorry... in all honesty you will (re)educate your pallet but you will still be fighting memories

In some ways try and reconsider the question like "which type of cigarettes are best for me" its one of those things where once you realise you can enjoy other things instead it gets much easier...

10) Right now dinner consists of chicken and rice or tacos/taco salad. My kids are not very adventuresome and anything that doesn't look "right" to them they won't eat. I can't define "right" it is their whim. Someone always seems to refuse to eat dinner. Suggestions?

Keep trying, keeping presenting them with new things, and keep them involved in helping them decide what new thing makes it to the table. Take variations on the theme that you've got and expand it - chicken and rice as a stir fry - then add a vegetable; taco salad, then add beans and other veggies, then go with a different meat. Etc. One-offs sort of thing.

Sure and this is normal for all kids Kids don't usually need a good reason for not liking something...in most caes they probably don't even try...

learning to appreciate stuff is something that never stops... I appreciate far more now than I used to even as an adult... and I guess I'll continue to learn to appreciate new things until my final breath...

What I would say from my own personal experience is anything that's fun to make... involve the kids in the prep ... and they have a preformed interest in the food... if you can make stuff like hash browns in faces etc. its all fun... and IMHO kids usually like doing stuff that's fun...

The more involved the better, as a kid I used to love berry picking in the fall... and then this led to working with the berries for crumbles or jams or whatever .. the same with fish, I was never a big fan but catching my own was different (obviously you can't do this everytime but once they get a taste you can buy the same fish, or frozen berries and restart the fun game from a bit further down the line)

[Juliet]

I have to agree with involving your child in the cooking process - it also helps them to understand what they can and can't have while not focusing on being negative. My son was diagnosed at 2 and is only 3 right now but he helps "cook" his food already. We make gluten-free pancakes, cookies, soup, cream of rice, risotto, etc., together. Anything where he can pour in the ingredients or stir. We also watch cooking shows together and talk about what's gluten free and what isn't. And if it looks good but has gluten, we talk about trying to make it gluten free. I always emphasize the positive - how he can have "yummy gluten free" food. And when we go shopping, we "read" labels together looking for things that are gluten free. Since he has it, he will have to know how to actually cook - he can't live on top ramen and spaghetti like most people do when they first move out of the house. So I try to make it as fun now as I can since he'll be doing this the rest of his life, and it helps because it makes him a little less picky now. And honestly, it helped me to adjust better, too. It's become a fun activity for us to do together and I look for things we can make rather than focusing on the things he won't be able to have.

BTW, although he's the only one who has it so far in our household, our kitchen is gluten free. We occasionally eat restaurant food with gluten here, but we don't prepare any gluten food anymore.

And the person who said her daughter eats only chicken nuggets and is having a hard time adjusting, there's a gluten free pre-made chicken nuggets by Ian's that you can get at Whole Foods in the U.S. My son loves them. I also make a substitute when I have the time, but on those nights when you have only about 5 minutes to get something together, Ian's nuggets are a lifesaver!

[TCA]

Tamara,

First of all, Welcome! We have all been in your overwhelmed shoes before and know how you feel. It will get easier! I put together a list to help new people get started. The link is in my sig line. I hope it might be helpful!

Hugs,

Tanya