2 Yr Old Son Possible Celiac

[KatieKates]

Hi all. I'm completely new here and this is the first time I've posted anything. I heard about this website and I'm glad to see there's a section for parents of wee ones with celiac or possible celiac. Here's my story: My son Scott just turned 2 this month. He's a happy go lucky little guy. He only weighs 24 lbs and is about 38 inches tall. He's very lean and I call him skinny minny. My family doc sent us to a Ped. to have him monitored b/c his weight doesn't go up much. Just about 2 weeks ago the Ped sent Scott for blood work for Celiac. At this point, I had never heard of such a thing so I was quite worried and still am. The test came back "suggestive" of celiac and my ped. said not to worry, it doesn't mean that he has it. But they are sending Scott to a specialist who will take things from there. I've looked into what the tests involve and of course it worries me even more. Scott is very picky eater and doesn't eat a lot of food for meals. Of course the stuff that he does like I've learned contain gluten. I've heard of this gluten-free diet but have no idea what is involved and where to get more information. I'd like to know what foods contain gluten and what don't. I don't want to start him on a gluten-free diet since he might have to undergo more testing that requires gluten in his body. After reading some of the posts on here, I've seen a lot discussed about poops...that's my concern. His poops are very rarely solid, maybe once every two weeks they are solid. The rest are loose and sometimes greeny-yellow and stinky. He broke out in a rash just over a week ago and the rash was just on his bum and inner thighs. One doc. thought they were chicken pox but my family doc said they weren't but wasn't exactly sure what it was from. He had croup recently but I don't think that causes a rash. So I'm thinking it could be b/c of this celiac stuff. Another post on here talked about a rash that her son developed and it sounds exactly like the one Scott had. Of course I"m worried and don't want Scott to have this. It's a completely different diet and I'm thinking it will be hard for him to adjust since he's so darn picky. Can anyone give me some advice or perhaps some insight into the next step for testing??? I probably shouldn't even read this stuff until I know for sure that it's celiac. It only worries me more. Thanks. Sorry for the novel I've just written.

[wolfie]

Welcome!! This place is a wealth of information!! It sounds like you have a lot of good info already. You are absolutely right about not putting Scott on a gluten-free diet until after he undergoes all testing or the results could be skewed. If he does end up with Celiac, it is not the end of the world. There are so many options now out there for food, really, there is no better time to have Celiac. There are all kinds of substitutes for gluten filled favorites. Many of which you can make in your own home with safe, gluten-free flours. My son was diagnosed in July and really the only thing that we haven't found a replacement for yet is Pop-Tarts (not that they are a great food choice to begin with). I try to stick with whole, unprocessed foods. Those are the easiest to make sure that they are gluten-free.

There is a member here, nini, who has a Newbie Survival Kit that will give you all sorts of info. It really helped me in the beginning.

Hang in there and don't hesitate to ask questions here!

[KatieKates]

How do I find Nini? Is there a way to do a search?

[Jestgar]

Here is nini's website:

Open Original Shared Link

[Ursa Major]

Here is a link to Nini's website. Scroll down to the bottom to find the links to the newbie survival kit. Open Original Shared Link

I would like to add, that even if the biopsy should be negative, you should still consider the gluten-free diet. Just don't start it until after the biopsies are taken (and make sure you insist on at least six being taken from different locations in the small intestine). The reason is, that testing in children under six is extremely unreliable and yields many false negatives. Trying the diet is really the best and most valid test in young children.

[celiacgirls]

I agree you should try the diet after all the testing is done whatever the results are. My younger daughter had symptoms which were never confirmed to be celiac by the traditional testing but the symptoms have gone away now that she is gluten-free. Diet response is really the best indication of a problem with gluten whether it is "only" gluten intolerance or celiac disease.

My older daughter is also extremely picky and I didn't know what she would find to eat when she had to be gluten and casein free since her favorite meals were grilled cheese sandwiches and macaroni and cheese. She is still picky but she has adapted and is even a little more willing to try things now. I'm sure your son will adapt to the diet, too. When I started my daughter on the diet, I emphasized all of the good treats she could still have. Luckily, we just did the gluten part first and she could have ice cream, most candy, a lot of potato chips, etc. Then when she saw that she felt better and realized she did need to do this, I went back to being more strict about nutrition.

[KatieKates]

Thanks for your help all of you. I checked the website and some of the food suggestions will come in handy but I forgot to mention that I'm up here in Canada and we don't have some of those restaurants but I will have to do my own research on foods anyway. Thanks. This website is very helpful.

As for the biopsies: do they put children out for that? I just can't even imagine what it's going to be like for Scott. I just worry and of course don't want to see him in pain. Doesn't help that I'm 5 months pregnant and very emotional! lol. Thanks again!

[katiejhawk]

We have our 4-year-old scheduled for a biopsy soon. We're told that it involves general anesthesia but that it is a very quick procedure. They're supposed to be up and running around again very quickly. When I had my biopsy, I was given a valium-related drug and didn't have a care in the world. After the procedure, my future husband and I went home and slept for hours (him because we had to be at the hospital so early). I remember no pain at all.

Good luck with everything.