Son Newly Diagnosed And So Frustratred Already (Long Post)

[rami]

After months of endless doctor's appointments my 8 year old son has finally been diagnosed with Celiac. His only symptom as far as we can tell is short stature and had we not gone to a an endocrinologist to investigate the reason for his slow growth we would have never suspected Celiac. The endocrinologist ordered a series of blood tests including the Celiac panel, his ttg IGA was 66 and the ttg IGG was normal as was his total IGA. Based on the abnormal blood results we were referred to a pediatric GI and he had an endoscopy two weeks ago. On Monday the GI confirmed that he had both lymphocytes and blunting to the villi in his small intestine.

Since we suspected that the preliminary diagnosis would be confirmed, before we received the results my husband and I have been working tirelessly to research safe foods for him to eat and we started the gluten free diet for him on Monday. This has not been easy on any of us, I cry at the drop of a hat and so does my son, but we have been trying to make the best of it.

Fast forward to today, grandma takes my son and his brother to school on Tuesday and Thursday morning and while we have tried to educate her on the importance of cross contamination and gluten free products, it is a huge learning curve for all of us. Apparently this morning while she was out of the kitchen my older son decided to have some pretzels so of course my 8 year old had some too. This was after a long discussion with both boys the night before about the importance of the gluten free diet. Grandma called me at work in tears, my son was in tears and honestly I cried as soon as I hung up the phone. I feel like the last three days have been wasted and we are back to square one. I know that his intestines will not heal in three days, but I feel like we are continually moving backwards instead of forward.

If you made it this far thanks for reading, I guess I just need to vent and get it off my chest. I know it is not the end of the world and there is far worse, but I feel as though I am grieving, not only for my son but for a past life that will not longer exist for our family. Is this normal?

[kareng]

One thing that might be helpful is to get rid all the gluteny stuff that the boy likes. Its hard enough without having to watch people in your own family eat stuff you love and can't have. Especially for the first few months. Also would prevent accidental glutenings.

[Mom-of-Two]

Please feel free to message me privately, I would happy to discuss this with you as my daughter is 8 also, and has been totally gluten free about 3 weeks now. It is incredibly overwhelming and I do not believe most people have a CLUE what it entails to provide a safe environment for a celiac kiddo, it is exhausting at times but being diagnosed with celiac myself 6 months ago, I can tell you that is does get somewhat easier. It takes time and lots of patience, but it is quite hard to accept at first. I still struggle with denial/acceptance that my daughter has it as well, I had barely accepted it for myself yet! I find it especially difficult when your child did not have overt symptoms- my daughter had no symptoms aside from occasional joint pain which we chalked up to being active, muscle aches/growing pains, etc. She had no digestive problems, ever her whole 8 years. Extremely healthy and growth always great. I only tested my children because of my own diagnosis.

You are so lucky to gain that diagnosis though, and what a great endo doc to run those labs on your son. Take the knowledge you have gained now and run with it- I totally understand how difficult it can be with another child in the house- I have a 4 year old in addition to my celiac 8 year old who tested normally so far. The best decision for us was to make our home gluten free. It is easier ALL around, I was resistant at first because my youngest ate so much pasta, gluten based snacks, etc. and I feared he would not eat anything if I took it away! What we learned is that he loves the Tinkyada gluten free pastas, and eats them just the same, snacks on whole foods like yogurt and fruits, rather than dry snacks that weren't good for him anyway, and there are many gluten free options for kids right now that are quite mainstream. I do buy Snyder gluten-free pretzels at my regular grocery store, we keep these in the car, etc. For snacks, my kids love popcorn for something crunchy as well. Pirate's Booty is a favorite but pricy, you have to look around and order gluten-free products online for sure!!! The Tinkyada pastas I buy at the store are over 45% off online where I order from now. Amazing!

I assume you were told that you and your hubby should be screened, also your younger child? Being genetic, it is entirely possible you or your hubby have it, and if you are considering making your home gluten free, you all need to best tested now before that change occurs. Also be sure you are addressing any vitamin/mineral deficiencies your son may have, usually related to iron and Vitamin D.

I thought I had a shared kitchen under control, until I had a babysitter over and worried the ENTIRE time we were away about how she was cooking in my kitchen, despite having things labeled. It is such a relief to know that all my utensils and pans/strainers are gluten free and we are all eating the same thing, I can even take a bite from someone's plate safely You will need to replace anything wooden, and utensils, have a separate pasta strainer and toaster, and cooking pan for gluten-free pastas, and if you have stainless steel pots and pans scrub them well or dishwash them if possible in very hot water to make sure there is no residue from pastas/gluten.

I am happy to message you a list of the gluten-free items we have found and that my child enjoys. I will tell you that we have had a few surprises since being gluten free- the kids are trying more foods, and my youngest FINALLY decided it was ok to eat meat! My daughter since being gluten-free is eating all sorts of new vegetables even, I am seeing a lot of changes in their diet that are very positive!

Good luck to you!

[Jestgar]

And remember that it's a journey, not an instant change.

Yes, that life is past, but remember that every ending also signals a new beginning. You have a wonderful new life ahead of you! Feeling better, eating new things, becoming a family that bonds over experiences, not just food.

Do get rid of that nasty, gluten stuff, and do something fun to try to make the change easier. Do you all like pizza? Figure out how to make a gluten-free crust from scratch and design your own toppings. Be prepared to laugh at failures (there will be many), and find new uses for the gluten-free baked things that can't pass as food. (Frisbee comes to mind for pizza crust....)

[AGH2010]

I just wanted to assure you that your emotions are totally normal. We first got our daughter's bloodwork back in May and learned about celiac. She was asymptomatic for the most part (figured her constipation was typical toddler constipation like most doctors assured us). We didn't have her scoped until a few weeks ago, so didn't start our gluten-free adventure until recently, but all summer I've been on a roller coaster of emotions. Just like you describe, I was crying at the drop of hat, at everything and anything. It's hard for others to understand because they figure there is so much gluten-free out there that it can't be that difficult to adapt. But it's not their kid who has to feel deprived and who will be tempted when they see their friends eating foods they like. Even my husband has not been as saddened by the diagnosis as I have. He thinks it will teach her self-discipline in the long run. But she's only 2.5! And she starts preschool next week. And my heart already breaks for how tempted she will be during snack time.

But as you say, it could be much worse and I guess that's what we have to remind ourselves every time we get sad.

Big hugs to you. Hopefully it will get easier for all of us.

[Minette]

Grieving is definitely normal. I cried a lot when my 6 year old daughter was diagnosed. I just felt so awful for her, thinking of how her favorite thing in the world was to go to Noodles & Co. for mac & cheese. I still feel sad when I think about it. Our "blessing in disguise" was that it look so long to go from the initial bloodwork, which was highly indicative of celiac, to the final diagnosis (about 3 months) that we all had time to get used to the idea. By the time she actually went gluten-free, she knew all about it and had more or less accepted it.

My daughter also had very minor digestive symptoms -- we did go to the doctor because of the frequent tummyaches, but they didn't seem to interfere with her life all that much. (We actually suspected lactose intolerance instead.) So while we told ourselves, and her, that it would be worth it because she would feel so much better, it is still a huge adjustment for not very much immediate benefit.

She's been gluten-free for a few months now and it is a LOT easier. She actually has a great attitude, and while she gets a little ticked off about not being able to eat certain things, the whole camp/school situation has been a ton easier than I thought.

It's also not the end of the world if they get glutened. Frustrating and possibly very unpleasant, but (in our experience at least) it's not like you're back to square one. It takes time to learn a whole new way of eating, and the silver lining from the fact that your son didn't have digestive symptoms is that at least at first, if he eats gluten by accident, it may not bother him that much. I'm sure my daughter has gotten CC'd at least a few times, and the only way we know is that she complains of a slight tummyache.

Hang in there and do your best to think of it as a learning adventure. It's a "fake it till you make it" thing.

[Kelleybean]

When we were first going gluten free with my then 3 year old, it was so overwhelming. And since it was for his autism and not celiac, I even had the luxury of making the switch slowly. I know it's cliche, but I wanted to tell you that it really does get easier. This site has been so helpful with suggestions and recipes. I also really love the posts where people talk about which products they love and which are duds (equally important, I think!).

Hang in there - you will figure this out!

[rami]

Please feel free to message me privately, I would happy to discuss this with you as my daughter is 8 also, and has been totally gluten free about 3 weeks now. It is incredibly overwhelming and I do not believe most people have a CLUE what it entails to provide a safe environment for a celiac kiddo, it is exhausting at times but being diagnosed with celiac myself 6 months ago, I can tell you that is does get somewhat easier. It takes time and lots of patience, but it is quite hard to accept at first. I still struggle with denial/acceptance that my daughter has it as well, I had barely accepted it for myself yet! I find it especially difficult when your child did not have overt symptoms- my daughter had no symptoms aside from occasional joint pain which we chalked up to being active, muscle aches/growing pains, etc. She had no digestive problems, ever her whole 8 years. Extremely healthy and growth always great. I only tested my children because of my own diagnosis.

You are so lucky to gain that diagnosis though, and what a great endo doc to run those labs on your son. Take the knowledge you have gained now and run with it- I totally understand how difficult it can be with another child in the house- I have a 4 year old in addition to my celiac 8 year old who tested normally so far. The best decision for us was to make our home gluten free. It is easier ALL around, I was resistant at first because my youngest ate so much pasta, gluten based snacks, etc. and I feared he would not eat anything if I took it away! What we learned is that he loves the Tinkyada gluten free pastas, and eats them just the same, snacks on whole foods like yogurt and fruits, rather than dry snacks that weren't good for him anyway, and there are many gluten free options for kids right now that are quite mainstream. I do buy Snyder gluten-free pretzels at my regular grocery store, we keep these in the car, etc. For snacks, my kids love popcorn for something crunchy as well. Pirate's Booty is a favorite but pricy, you have to look around and order gluten-free products online for sure!!! The Tinkyada pastas I buy at the store are over 45% off online where I order from now. Amazing!

I assume you were told that you and your hubby should be screened, also your younger child? Being genetic, it is entirely possible you or your hubby have it, and if you are considering making your home gluten free, you all need to best tested now before that change occurs. Also be sure you are addressing any vitamin/mineral deficiencies your son may have, usually related to iron and Vitamin D.

I thought I had a shared kitchen under control, until I had a babysitter over and worried the ENTIRE time we were away about how she was cooking in my kitchen, despite having things labeled. It is such a relief to know that all my utensils and pans/strainers are gluten free and we are all eating the same thing, I can even take a bite from someone's plate safely You will need to replace anything wooden, and utensils, have a separate pasta strainer and toaster, and cooking pan for gluten-free pastas, and if you have stainless steel pots and pans scrub them well or dishwash them if possible in very hot water to make sure there is no residue from pastas/gluten.

I am happy to message you a list of the gluten-free items we have found and that my child enjoys. I will tell you that we have had a few surprises since being gluten free- the kids are trying more foods, and my youngest FINALLY decided it was ok to eat meat! My daughter since being gluten-free is eating all sorts of new vegetables even, I am seeing a lot of changes in their diet that are very positive!

Good luck to you!

Thank you so much for the encouragement! My emotions have calmed a bit, but I still feel like I am on a very unpleasant roller coaster ride. I actually have two other children a 9 year old son and a 2 year old daughter so this has been very challenging. The GI doc did recommend we get the other two, as well as, myself and my husband tested and we are currently working on that process with his pediatrician since they are technically not patients of the GI doc yet. He did indicate that even if they tested negative they would most likely have to be retested so I am trying to convince his pediatrician to run the genetic test on them. I know that if they have the genes it won't matter and they will have to be retested anyway, but my hope was if they didn't have it then they wouldn't have to go through the worry.

I would love to message you privately to discuss food/snack ideas and it would be nice to talk with another mom who knows what I am going through. Can you tell me how I would do that?

Again thanks for your help!

[rami]

And remember that it's a journey, not an instant change.

Yes, that life is past, but remember that every ending also signals a new beginning. You have a wonderful new life ahead of you! Feeling better, eating new things, becoming a family that bonds over experiences, not just food.

Do get rid of that nasty, gluten stuff, and do something fun to try to make the change easier. Do you all like pizza? Figure out how to make a gluten-free crust from scratch and design your own toppings. Be prepared to laugh at failures (there will be many), and find new uses for the gluten-free baked things that can't pass as food. (Frisbee comes to mind for pizza crust....)

Thanks for the encouragement, and you are so right we have a wonderful life ahead of us!

[kb27]

Hang in there! You are where we were about 6 months ago, when my then 8 year old was diagnosed. His only symptom was anemia, so he, too, felt fine and finding out he had celiac was kind of a fluke.

We ended up making the whole house gluten-free. I decided that would be easier than dealing with obsessive cleaning and crumb paranoia, and it also provides my son one safe place where he can eat everything there and everyone else eats the same food he does. At home, he's just like everybody else.

I think one of the other things that setting up a gluten-free household did was make the rest of us go through a similar emotional roller-coaster to my son. He didn't have to do it alone. I had to figure out new things to take for lunch, too. I love baking, and suddenly I felt totally incompetent and had to re-learn how to make everything gluten-free. And so on. There was a definite period of mourning, and then eventually it just became normal.

So, yes, it does get easier. Even if you don't completely switch the kitchen gluten-free, try and get rid of the things he really likes to eat that he now can't have. The less you have to say "no, you can't eat that", the better. Good luck!

[rami]

I just wanted to assure you that your emotions are totally normal. We first got our daughter's bloodwork back in May and learned about celiac. She was asymptomatic for the most part (figured her constipation was typical toddler constipation like most doctors assured us). We didn't have her scoped until a few weeks ago, so didn't start our gluten-free adventure until recently, but all summer I've been on a roller coaster of emotions. Just like you describe, I was crying at the drop of hat, at everything and anything. It's hard for others to understand because they figure there is so much gluten-free out there that it can't be that difficult to adapt. But it's not their kid who has to feel deprived and who will be tempted when they see their friends eating foods they like. Even my husband has not been as saddened by the diagnosis as I have. He thinks it will teach her self-discipline in the long run. But she's only 2.5! And she starts preschool next week. And my heart already breaks for how tempted she will be during snack time.

But as you say, it could be much worse and I guess that's what we have to remind ourselves every time we get sad.

Big hugs to you. Hopefully it will get easier for all of us.

Thank you so much for your reply! It is reassuring to know that my feelings are normal. My husband does not seem as affected, I think he is just happy to finally have an answer as to why our son is not growing. I too have thought about birthday parties, school parties, play dates, and how it will be so different for him. I'm trying not to dwell on it because it brings me to tears thinking about it, but it is hard to not think about it. I'm also trying to focus on the positive, he absolutely loves football so I told him that Drew Brees is also a celiac and that perked him up. We also went to a gluten-free food fair this week and there were tons of other kids there so I think that made him happy as well!

Thanks again, and big hugs to you also!

[kb27]

I wanted to add one more thing. My son really loved the book "The gluten-free Kid: A Celiac Survival Guide". It acknowledges that celiac is a serious disease, but that you can live with it and be a normal kid at the same time. Somehow it hit home with him - we read it over and over and over.

[rami]

Grieving is definitely normal. I cried a lot when my 6 year old daughter was diagnosed. I just felt so awful for her, thinking of how her favorite thing in the world was to go to Noodles & Co. for mac & cheese. I still feel sad when I think about it. Our "blessing in disguise" was that it look so long to go from the initial bloodwork, which was highly indicative of celiac, to the final diagnosis (about 3 months) that we all had time to get used to the idea. By the time she actually went gluten-free, she knew all about it and had more or less accepted it.

My daughter also had very minor digestive symptoms -- we did go to the doctor because of the frequent tummyaches, but they didn't seem to interfere with her life all that much. (We actually suspected lactose intolerance instead.) So while we told ourselves, and her, that it would be worth it because she would feel so much better, it is still a huge adjustment for not very much immediate benefit.

She's been gluten-free for a few months now and it is a LOT easier. She actually has a great attitude, and while she gets a little ticked off about not being able to eat certain things, the whole camp/school situation has been a ton easier than I thought.

It's also not the end of the world if they get glutened. Frustrating and possibly very unpleasant, but (in our experience at least) it's not like you're back to square one. It takes time to learn a whole new way of eating, and the silver lining from the fact that your son didn't have digestive symptoms is that at least at first, if he eats gluten by accident, it may not bother him that much. I'm sure my daughter has gotten CC'd at least a few times, and the only way we know is that she complains of a slight tummyache.

Hang in there and do your best to think of it as a learning adventure. It's a "fake it till you make it" thing.

Thanks for the response! It is so nice to know that we are not alone because although our families have been very supportive, most everyone else doesn't think it is a big deal. I was speaking with my son's principal yesterday to explain everything to her and she said "don't worry, we have lot's of kids with wheat allergies". I went on to explain that Celiac disease was not an allergy but an autoimmune disorder and that any kind of gluten, wheat, etc. could make him very sick and she just gave me a blank stare! I think the school is trying to be helpful but they just don't get it. We meet with a nutrionist next week so I am hoping she can intervene at school. Have you found your daughter's school to be helpful or more of a hinderance?

[Mom-of-Two]

You can just click on my name and message me

[rami]

Hang in there! You are where we were about 6 months ago, when my then 8 year old was diagnosed. His only symptom was anemia, so he, too, felt fine and finding out he had celiac was kind of a fluke.

We ended up making the whole house gluten-free. I decided that would be easier than dealing with obsessive cleaning and crumb paranoia, and it also provides my son one safe place where he can eat everything there and everyone else eats the same food he does. At home, he's just like everybody else.

I think one of the other things that setting up a gluten-free household did was make the rest of us go through a similar emotional roller-coaster to my son. He didn't have to do it alone. I had to figure out new things to take for lunch, too. I love baking, and suddenly I felt totally incompetent and had to re-learn how to make everything gluten-free. And so on. There was a definite period of mourning, and then eventually it just became normal.

So, yes, it does get easier. Even if you don't completely switch the kitchen gluten-free, try and get rid of the things he really likes to eat that he now can't have. The less you have to say "no, you can't eat that", the better. Good luck!

I am struggling with the decision of a gluten-free house. My husband and I, as well as our two other children still need to be tested so I can't cut gluten completely out yet but maybe once I know the status of the rest of the family my decision will be easier. Although after this morning it should be a no-brainer. While I am thankful that my son doesn't have GI issues it's also frustrating because I have no way of knowing if he is inadvertently eating gluten. My fear is that we will think that we are giving him all the right things but we will return in 6 months for a retest and his result will be the same or worse. We are going to keep an eye on his growth and weight but his doctor said it could take 9-12 months before we notice any significant growth. Since your child has been on a gluten free diet have you noticed a change in symptoms if he does accidently eat gluten?

Thanks for your response and I am going to pick up the book you recommended this weekend!

[GFinDC]

Hi,

Your kids will be eating a much healthier diet if they switch to gluten-free and whole foods. All those chemiclas and preservatinves an d food colorings and GMOS in our modern processed foods are not helpful to us. They do help food companies make money though. Check out the meal threads for breakfast, lunch, dinner etc. Lots of ideas for things to eat there.

Eating gluten-free isn't the end of the world. It's just eating different and often healthier food than most people eat.

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.

Don't eat in restaurants

Eat only whole foods not processed foods.

Eat only food you cook yourself, think simple foods, not gourmet meals.

Take probiotics.

Take digestive enzymes.

Avoid dairy.

Avoid sugars and starchy foods.

Avoid alcohol.

FAQ Celiac com

https://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101

What's For Breakfast Today?

What Did You Have For Lunch Today?

What Are You Cooking Tonight?

Dessert thread

Easy yummy bread in minutes

How bad is cheating?

Short temper thread

Non celiac wheat sensitivity article

Open Original Shared Link

[kb27]

I am struggling with the decision of a gluten-free house. My husband and I, as well as our two other children still need to be tested so I can't cut gluten completely out yet but maybe once I know the status of the rest of the family my decision will be easier. Although after this morning it should be a no-brainer. While I am thankful that my son doesn't have GI issues it's also frustrating because I have no way of knowing if he is inadvertently eating gluten. My fear is that we will think that we are giving him all the right things but we will return in 6 months for a retest and his result will be the same or worse. We are going to keep an eye on his growth and weight but his doctor said it could take 9-12 months before we notice any significant growth. Since your child has been on a gluten free diet have you noticed a change in symptoms if he does accidently eat gluten?

We can't really tell if he's been glutened, to be honest. We asked him to let us know if his stomach ever hurt. He mentioned it a few times - only once did we think it might have been gluten (after a big family dinner at a relative's house). I had the same feeling you did though, that we didn't know if we were doing it right or not. We just retested his antibody levels after 6 months gluten-free though and they were back to normal, so we know it has been working. He's also grown 2 inches and added about 5 pounds.

[Minette]

Thanks for the response! It is so nice to know that we are not alone because although our families have been very supportive, most everyone else doesn't think it is a big deal. I was speaking with my son's principal yesterday to explain everything to her and she said "don't worry, we have lot's of kids with wheat allergies". I went on to explain that Celiac disease was not an allergy but an autoimmune disorder and that any kind of gluten, wheat, etc. could make him very sick and she just gave me a blank stare! I think the school is trying to be helpful but they just don't get it. We meet with a nutrionist next week so I am hoping she can intervene at school. Have you found your daughter's school to be helpful or more of a hinderance?

Our school has been pretty helpful, but we live in a very "enlightened" area (Boulder, CO). I did have to explain to the teacher, principal, and nurse all about the issues of cross-contamination (as opposed to just not eating wheat), but they were all very understanding. It's actually not too challenging right now because my daughter isn't (as far as we know) very sensitive to tiny amounts of gluten. But every time I bring up something new like asking what brand of glue they use, or pointing out that she can't dump her lunch bag in the bin with all the other kids', they're like "Oh, we never thought of that, thanks for mentioning it!" Which is just about as good a response as you can reasonably hope for.

I also emailed a letter to the principal just before school started, and she wrote back within a day and copied the school nurse. The nurse then emailed me directly and told me what she needed from Sarah's doctor to formulate a care plan. So, although they may not know a lot about celiac, they have good policies in place for dealing with allergies and food issues in general.

On the subject of whether the whole family should go gluten-free... We haven't yet. I cook gluten-free meals for dinner, but the rest of us (who all tested negative, though none of us have had the genetic testing) still have English muffins with our scrambled eggs and eat our sandwiches on wheat bread. I was never a big baker -- really all I make is muffins, so while it's still been a learning curve, I'm able to see it as a new challenge rather than as a loss.

Still, the majority of our kitchen is gluten-free and that's really helpful. We keep the gluten stuff segregated to one cupboard and one section of the countertop, and we have separate utensils for gluten & non. It would make me crazy to not be able to set a spoon down on the main work surface because I didn't know if it was safe. I think, for now at least, we have a good balance.

We've been very happy with Tinkyada pasta and can barely tell it from the "old" kind. We ate a lot of brown rice anyway. I bought new gluten-free versions of all our condiments (as necessary) and I use quinoa instead of couscous in some of my old recipes. It hasn't been THAT huge of a deal, once I got used to it. It was a pretty big financial investment with the cookware and utensils, but I was able to spin it to myself as a necessary upgrade after 10 years of marriage.

[frieze]

not having children but being in the healthcare field, I think one of the biggest things parents can (try) to do is NOT to grieve too much in front of the child in question. Not to deny the child's grief, but support that child in moving thru it and on to acceptance. I was taught not to treat a "sick" child as if they were more sick than they are...do to much for them etc. ....they will/can fall into the "sick/deprived" mindset very quickly, or become overly fearful.

good luck

[Minette]

not having children but being in the healthcare field, I think one of the biggest things parents can (try) to do is NOT to grieve too much in front of the child in question. Not to deny the child's grief, but support that child in moving thru it and on to acceptance. I was taught not to treat a "sick" child as if they were more sick than they are...do to much for them etc. ....they will/can fall into the "sick/deprived" mindset very quickly, or become overly fearful.

good luck

That's a good point. Although I cried privately, I tried to present it to DD more as "OK, this is definitely a bummer, but you will feel so much better!" Also, she's always been annoyed at being short and skinny (she didn't hit 40 lbs and move to a booster seat until she was almost 6), so we keep telling her that she will start to grow.

The book "Eating Gluten-Free with Emily" was also really helpful for us in presenting it in a realistic but upbeat way. It's good for younger kids (I'd say ages 4-7 or so). "The gluten-free Kid" is good too, but I was only able to find it at the library -- it seems to be out of print and used copies are extremely expensive.

[Mom-of-Two]

I wonder myself actually if I have cross contamination symptoms. I have been gluten-free for 6 months and my antibody levels were WAY down, almost normal, at only 3 months gluten-free so I know I am being strict enough, also since then our house has become gluten-free per my doc's suggestion. So, I really expect my numbers to be normal when I go next month, I am hoping! I find I do get bloating and sometimes gas, but haven't really connected any signs or symptoms to something that could have been cross contaminated. The only place I eat from is Chipotle and they are hugely accomodating to my needs (and now two of us since my 8 year old loves it), they change gloves, change utensils, get fresh cheese from the freezer, etc. and we get bowls so there is very little risk of contamination, at least from what we have experienced. I have never had any problems after eating their food. Hubby and I went to PF Changs for the first time ever, when we went away for 2 days for our 10 year anniversary back in June- it was my very first experience eating out since being gluten-free and it was a phenomonal experience. Haven't been back, but hope to again! Otherwise, we cook at home, so our exposure is pretty small. I haven't had to deal with my daughter and staying with anyone yet, she has done two birthday parties but taken her own treat, and the one party the mom called to let me know she would have popcorn and that is was labeled as gluten free.

I wonder if my daughter will experience CC reactions or not, since she did not have GI symptoms to begin with. We are lucky that she is hugely accepting of being gluten free and has never expressed saddness or being upset in any way, she is actually quite happy to eat her own special thing at events she's a very accepting child in that way, always has been very unaffected by what others are doing! She just worries about herself Her favorite things, meat, yogurt and fruits were all unchanged which I think helped.

[NGG]

When we changed over my 10-year-old daughter's diet, I took her out and let her get all the gluten-free snack food that looked good to her. I am usually careful with sweets and snacks, but I decided that for the first couple of weeks I'd be very relaxed and let her have extras so she didn't keep thinking about all the things she had to do without.

We're past that now but this is still new to us. I was diagnosed a few months ago and have been at it for a while, but it's only been a few weeks for her. She's over the novelty of new snacks and sweets, and is thinking about birthday parties and school activities with food. I bought a chocolate chip cookie mix from Bob's Red Mill and I told her we could make cookies from that for when kids have stuff at school. I'm trying to figure out how to mix up just a bit of it to make a few cookies rather than making all at once, though. I can't have chocolate either.

Oh, and the benefit of the couple of weeks of lots of snacks is that she started to feel a lot better by the time the novelty had worn off, and she doesn't want to have her stomach hurt anymore. She was also very very moody and her moods seem much more regulated, so I think she's just generally happier. She's thankful enough to not feel sick that she seems to be careful, even when with friends and out of my sight.

I'm wondering if you could try that as well to get him over that learning period? The biggest problem IMO is that the gluten-free stuff is pricey. But you can make gluten-free rice krispie treats too, and that isn't too bad. What I'd like is to find a good list of regular store items that just happen to be gluten-free. That's my next project.

[kb27]

When we changed over my 10-year-old daughter's diet, I took her out and let her get all the gluten-free snack food that looked good to her. I am usually careful with sweets and snacks, but I decided that for the first couple of weeks I'd be very relaxed and let her have extras so she didn't keep thinking about all the things she had to do without.

We're past that now but this is still new to us. I was diagnosed a few months ago and have been at it for a while, but it's only been a few weeks for her. She's over the novelty of new snacks and sweets, and is thinking about birthday parties and school activities with food. I bought a chocolate chip cookie mix from Bob's Red Mill and I told her we could make cookies from that for when kids have stuff at school. I'm trying to figure out how to mix up just a bit of it to make a few cookies rather than making all at once, though. I can't have chocolate either.

Oh, and the benefit of the couple of weeks of lots of snacks is that she started to feel a lot better by the time the novelty had worn off, and she doesn't want to have her stomach hurt anymore. She was also very very moody and her moods seem much more regulated, so I think she's just generally happier. She's thankful enough to not feel sick that she seems to be careful, even when with friends and out of my sight.

I'm wondering if you could try that as well to get him over that learning period? The biggest problem IMO is that the gluten-free stuff is pricey. But you can make gluten-free rice krispie treats too, and that isn't too bad. What I'd like is to find a good list of regular store items that just happen to be gluten-free. That's my next project.

I can help with two of these issues!

We always mix up a full batch of chocolate chip cookies, drop them in spoonfuls onto a cookie sheet covered with wax paper, and then put them in the freezer. Once the little cookie dough blobs have frozen, you can toss them in a ziplock. Then you just pull out however many cookies you want to bake and bake them (we just use the toaster oven).

And for "regular" brand foods, we got a book called the "Gluten free grocery shopping guide" by Matison and Matison. It lists which brands and flavors within each brand are gluten-free. We often check specific brands on-line, too, if we can't find it in the book. We started by going through the brands we used to buy, and then found gluten-free alternatives for the things that weren't gluten-free (like soy sauce, for instance). Lots of regular brands are naturally gluten-free. I've noticed that even within the last 6 months, more of them are starting to add the "gluten-free" label, too, which helps when you forget the book...

(We did the snack food thing, too, at first. It's rare that my kids get to go to the store and pick out cookies, so I let him pick out a couple kinds to try. He was in heaven.)

[NGG]

I can help with two of these issues!

We always mix up a full batch of chocolate chip cookies, drop them in spoonfuls onto a cookie sheet covered with wax paper, and then put them in the freezer. Once the little cookie dough blobs have frozen, you can toss them in a ziplock. Then you just pull out however many cookies you want to bake and bake them (we just use the toaster oven).

And for "regular" brand foods, we got a book called the "Gluten free grocery shopping guide" by Matison and Matison. It lists which brands and flavors within each brand are gluten-free. We often check specific brands on-line, too, if we can't find it in the book. We started by going through the brands we used to buy, and then found gluten-free alternatives for the things that weren't gluten-free (like soy sauce, for instance). Lots of regular brands are naturally gluten-free. I've noticed that even within the last 6 months, more of them are starting to add the "gluten-free" label, too, which helps when you forget the book...

(We did the snack food thing, too, at first. It's rare that my kids get to go to the store and pick out cookies, so I let him pick out a couple kinds to try. He was in heaven.)

Great idea to just freeze blobs of cookie dough! We'll do that for sure. In fact my daughter could make the dough herself, freeze the blobs herself, and probably even cook a few cookies at a time herself. She'd love that project.

And I will look for the book. She'd like to be able to look up what she can have herself, I'm sure. I'll have to see if they have it for the Kindle - she and I each have one and then she can look it up easily whenever she wants, or just read through the lists. I found a list of gluten-free candies online the other day after she asked me what Halloween candy she'd be able to have, but I don't want to have to search every time I need information about anything. I'd rather have a refrence tool I can easily access.

[Gluten Free Girls]

Your post is all too familiar. My two daughters and I were diagnosed a year ago and we still have spells of grieving and crying. It's extremely overwhelming. You are far more normal than you know!!! I promise you that while it never will be easy, it does get easier. Our first year was tough just because you meet each holiday and scenario for the first time and you learn so much. Halloween, birthday snacks at school, Easter candy, and just the every day hurdles. You are a brave, strong Mom! I wish that I could just show up for families that are newly diagnosed and help you poor through your kitchen, walk with you through the grocery store and have a batch of gluten free brownies baking in the oven all the while. There is so much to learn and it's really left to us to research, read, and dig for all the answers. I promise that 6 months from now, you will look back at this first post and realize how far you have gone. In the mean time, cry when you need to cry, hug your boy every chance you get and keep posting on this forum because it really does help! Best of luck to you.