Annaatje

Today I got the results for my Celiac screen back. DH, DS2 and me were all tested because DS1 was recently diagnosed with Celiac (positive bloodwork + biopsy).

We all had a request for the same test: IgA, IgG and ttG. Both my two sons and my husband got actual numbers back for all three, as well as a reference. DH and DS2 tested negative with very low numbers on all three.

My test results have me confused though.. I had my bloodwork done at the same lab as DS1, but what I got back looks very different.

It just says:

- Endomysial Antibodies Negative Reference Range: negative

- tTransglutaminase IgA 13 Reference Range: <20 Units KEU/L

So, I get that the ttG was negative, because it was less than 20, but what I am wondering is if with endomysial antibodies they mean the IgA and IgG??

Don't get me wrong, I'd rather not have celiac disease, but with DS1 having it and me all my life having vague symptoms that all *could* (but don't need to be) related to celiac disease I really want to make sure that the testing has been done right. KWIM?

Hopefully can anyone here help me out.. Otherwise I'll just go back to the doc and ask for clarification, but with three young kids I have better things to do with my time than sitting in a waiting rooms for a couple of hours, LOL!

TIA!

I don't think I would worry about it if I were in your shoes, as long as do all the hand washing and table cleaning you mentioned.

I do worry about my 5 year old handling gluten-play dough, because he might stick his fingers in his mouth or not wash his hands very well.

I had found this too and am already saving all the grocery receipts.

What I am wondering about though is how to calculate the price difference.. I mean, that would depend on where you would buy the gluten equivalent, right? I was planning to call Revenue Canada and ask them, but maybe someone here knows?

That's great!!! I had been wondering about their food as well.

And those grill thingies sound wonderful. We are very new to the gluten-free diet and last week I grilling my son's hot dog on a piece of aluminum foil, but it didn't work that great and it took quite a bit longer than our hot dogs which were cooked right on the grill.

We have a Cuisinart breadmaker that I now use for gluten-free bread and so far all the loaves have come out yummy! I make them for my son who is the celiac in our house, but if it wouldn't be so much extra work we would all be eating his bread. I have had great succes with recipes from the Donna Washburn and Heather Butt cookbooks and also with a recipe from the recipe book that came with our Cuisinart. (It has a gluten-free cycle as well)

I agree about breadmakers breaking all the time though! This is our third breadmaker (we made our own bread for a couple of years) and it's the only one that has lasted longer than a year.

Anyway, it works great for us. My three little ones keep me super busy, so for me it's good to have a more hands-off way of bread making. (Although I figure that with the mixer method I could make a double or triple batch and save time that way.)

It's a very personal decision, but I can tell you why we chose to do the testing on my 5-year old.

We wanted a sure diagnosis so that when he gets older and might doubt the necessity we can tell him with certainty that gluten are bad for him.

Also, we are in Canada and here you can get a tax deduction if you have to follow a gluten-free diet for medical reasons. We would be able to handle the added cost right now, but when our son goes to college in the future it might be much harder on his budget and a tax deduction might help him a lot.

So, for us the reasons for testing are mostly long-term. It's a difficult decision to make.. A year before he was diagnosed I actually had a referral and appt. with a pediatric GI, but cancelled it because he seemed to be a bit better and I didn't want him to undergo any invasive tests when it wasn't necessary. After his blood test came back positive for Celiac last March we still didn't like the idea of an endoscopy, but for us the pros outweighed the cons at that point.

That's the recipe I am using as well and it works great!!

My son is newly diagnosed and I am now providing the play dough for his classroom. Before this his teacher used to make a batch every month. It's not much work for me and I am sure that his teacher is so busy that she doesn't mind someone else making the playdough

Hello there!

I live in Ottawa, Ontario. Moved here from Holland 6 years ago.

I'm new to the forum, my oldest DS just got diagnosed and the rest of us are now getting tested.

I'm so grateful for all the resources out there! And also the amount of gluten-free food available. We took my DS off wheat for about 1.5 years a couple of years ago and even in that short amount of time the gluten-free options have improved! I usually shop at Food Basics and they now have a gluten-free line of the Irresistible brand, their gluten-free breadcrumbs are a whole lot cheaper than other brands I've seen

Hmmm, well it seems like I am going to be posting about social situations a lot, since that seems to be my biggest hang-up at the moment.

A lot of people don't know about DS's celiac disease yet and/or haven't shared a meal with us since he started the gluten-free diet.

What I am wondering is, how do you guys break the news about the food restrictions when someone invites you over, or wants to bring food to your house. And in which cases do you just not say anything?

I find it hard, because naturally I am someone who apologizes easily and maybe too easily. Probably if I were the one with celiac disease (if I am too, I don't know it yet) I would start apologizing for the inconvenience and then explain. BUT! Because this is about my 5-year old son, I feel very strongly that he should NEVER have to apologize for having celiac disease. He can't help it so no need to apologize IMO. However, this means that we are going to have to give the right example, because we are the ones that will have to teach him how to deal with celiac disease and the gluten-free-diet.

What do you do??

Thanks for the advice!

I think that I find this especially hard because we are so lucky to have wonderful friends who are really wanting to learn about celiac disease and even want to prepare gluten-free foods. And before celiac disease took up residence in our own house I always was trying to accommodate my gluten-free and/or vegan friends whenever they came to my house, so I really appreciate what everyone is doing for us.

I am so glad that this forum exists!

We quite recently found out that my 5 year old son has celiac disease. He had an endoscopy/biopsy two weeks ago after which we immediately started him on the gluten-free-diet.

At home it's going alright, we just have to watch for cross-contamination, but it's some social situations that are just so awkward and I could use some advice about it.

- Our neighbour baked some things for us, all ingredients are gluten-free, but may have been contaminated. She made some (really yummy!) chocolate peanut butter cups, but I figured that their peanut butter jar would be contaminated, so didn't give them to DS. But, she also made some (also very yummy) macaroons. Again, all ingredients are okay, but now I am worried about the measuring cups etc.

- We invited some friends over for lunch this weekend. Today I had a voice mail from them that they feel that I should not be doing all the work (we just had our 3rd baby), which of course is really, really sweet. But again, if they bring food I don't know what to do. First of all I feel kind of bad asking them to go through the trouble of making it gluten-free and even if they did I would be worried about cross-contamination, or just plain mistakes. I now know how difficult it is to everything right and even realised that I accidentally glutened a celiac friend a couple of years ago, before we were dealing with celiac disease in our own family.

Please tell me that these things get easier over time.... I really want to be strict with DS's diet, because I figure that if he still ingests gluten we are doing all the work for nothing. Another thing that I was hoping to achieve is that in our own house DS will be able to eat everything, because he will already be faced with so many restrictions when he goes elsewhere..

Anyway.. as you can see I am still pretty confused about this whole thing and could use some advice from the experienced people out there.

Thanks Cara! I am glad that it went so well for your son, it sounds like he went to a place that was very tuned in to kids. I really appreciate hearing his story, that helps with my own anxiety about this and it is good to be able to tell my DS positive stories

We are also going to a children's hospital, so I hope that they will be good at well. When we had our GI appt there I was impressed with how nice they were to him, so I have good hopes.

Glad to hear that it went well!!! Keep us posted on the results.

We just got a date for the endoscopy for my almost 5-year old.. It will be May 2nd, so it's getting closer and if you wouldn't mind sharing I would love to hear more about how it went with your child..

I am also new to the whole-celiac thing (my almost 5-year old will have his scope some time in the next few weeks), so I don't have answer to your questions.

I just wanted to wish you good luck tomorrow! Hopefully you'll get some more clarity.

Thanks everyone, it's really good to hear all these experiences. We are not talking about the procedure with my son right now, because it's still a few weeks away (of course, if he starts talking about it we will discuss it with him), but as soon as we do talk about it again I will mention all the positive things that you all wrote

Monica, we are in Canada actually, so I will look for the Emla cream. DS had general anesthesia about two weeks ago for a bead that was stuck in his ear ( ) and that time they only gave him an IV when he was already under... So maybe I will check with the anesthesiologist at our pre-op appt.

As for for the scope, we decided to go ahead with it because we would prefer a diagnosis that is absolutely a 100 %, because it will be a lifelong thing for him it is important to us that we are absolutely sure. But, even if the scope comes back negative we will still take him off gluten.

He was sick again last night and I am pretty sure it's gluten-related. Ugh, I can't wait to go gluten-free for him. We will go gluten-free as soon as he has had the scope and I think I'll bake a big gluten-free cake to celebrate

Hi! I am new here. My oldest DS (almost 5 years old) had a celiac screen done, which came back positive. This was no surprise, he has been having symptoms pretty much every since he started solids and of course looking back it all makes SO much sense.

Anyway, we met with the G.I. for the first time yesterday and the next step is going to be an endoscopy & biopsy in a couple of weeks.

DS came with us to the appt. and the idea of an endoscopy scared the heck out of him, and I don't blame him, because it would scare the heck out of me too. It will be done under general anesthesia, which he has had before, so he knows that he'll be asleep for the whole thing.

He is still really nervous about it though, so I promised him I would come here and ask if other kids could maybe share their experiences. I think this will help him feel less afraid and hopefully also not like he is the only child that has ever had to do this.

So, I would really appreciate your stories about how the endoscopy was for your child(ren).

TIA!!