Hi! New With Questions

[Maggs05]

Hello everyone!

I'm new and looking for information. I just happened upon this site. My ds (age 6) is the one that is in the process of a possible celiac diagnosis. We are in the very initial stages. We have just gone to the Dr's for the first time with his symptoms/problems and celiacs was mentioned.

He is getting a referral to a ped GI, which unfortunately is 2 hours away from where we live.

A blood test was mentioned, but come to find out OHIP (we live in Canada) does not pay for the test. It is $125.00.

Ds' symptoms are severe cramping and diarrhea and non-weight gain/some loss (2 lbs since his 5 year check up, he just turned 6). I have been keeping a food log and we have noticed that when he eats whole grain foods he gets an episode of cramping and diarrhea within a few hours. Now it's not always 100% consistent, but the correlation seems to be there.

Even on good days, where his tummy is just sore, he hasn't had normal bm's in quite a while.

I have IBS and am just hoping that this is what he has as well. I'm not really sure exactly what I am asking here, perhaps just some insight as to whether or not it sounds like it may be celicas.

Thanks for letting me share.

[ang1e0251]

He could have celiac disease or gluten intolerance and so could you. Many people have been dx'd with IBS only to find out at a later date it was really celiac disease. I'm surprised the blood panel isn't covered in Canada. I know the testing takes some wait time but I thought you could usually get it. Canadian friends, what's up with that? Seems like a sick child would qualify for a blood test.

Your child does have some classic signs of celiac disease and diagnosing a child is tricky. Keep him eating some gluten every day until his testing is complete. It will throw his testing off for him to go gluten free now. If he's dx'd, you should be tested also. He inherited it from his parents and that might mean you.

[Maggs05]

Thanks for the response.

As far as continuing to have him eat gluten, someone else told me the same thing, but I am curious about one thing. If he does have celiac, would that not mean that he would react to every bit of gluten in his diet?

Or can it be sporadic?

I forgot to mention earlier that ds has always been very tiny. He turned six in May and is currently 41" and 37 lbs. He always struggled to gain weight. Another piece of the possible puzzle, or just coincidence?

[ang1e0251]

Slow growth can be another piece of the puzzle. Reacting to gluten, well, I've read it described as you fill up like a rain barrel fills with every drop of rain until at some point, the barrel is full. Then you reach the tipping point, and the barrel spills over. You eat gluten until your body reaches the tipping point then it spills over with sickness and symptoms. That could be why it seems sporadic. I can tell you that I react differently each time. I have some recurring gastro stuff but apart from that I could have edema, neuropathy, fuzzy brain, bloating, extreme hunger or noisy stomach and fatigue. There's probably a few I've overlooked. I might have one of those or several. If it's a bad reaction I'll even break out in DH.

My friend's daughter had to re-test and they told her one slice of bread a day was sufficient. She was 20 YO. You can ask the gastro dr how much they want your child to eat a day for testing.

Anyone out there have experience with how much gluten a child should eat before testing?

[Darn210]

Keep him on his normal/current diet until testing is done . . . including endoscopy if they/you want to do it.

My daughter had good and bad days with no "real" difference in her diet . . . or no difference that I could really figure out. Her symptom was acid reflux (with regurgitation). Some days she would "spit up" once or twice or even not at all . . . other days it was steady. I also noticed it was worse on days that she had soccer . . . was it the running around?? . . . was she a little nervous??? I mention it because it may not even be "food" that factors in why some days are worse than others.

[Maggs05]

Thanks for clearing some things up for me. I've yet to hear from the Dr. about when his GI appointment will be. Hopefully it's sooner rather than later, seeing as wait times to see specialists can be horrid here.

Luckily, I'm off work for the next 2 months, so travelling won't be difficult.

I seriously don't think I can handle anything else. It always seems like something is going on with my kids. They both had weight issues as babies, my dd at 18 months was diagnosed with a bone tumour, (she's doing fabulous now) ds has severe seasonal allergies and chronic sinus infections which he just had surgery (2 weeks ago) to remove his adenoids. Dd has speech issues (mild) with which she receives speech therapy and is having tubes put in Aug.

So now the gastro issues have worked their way into the equation. What next?

[jmjsmomma]

Hi and welcome.

My ds was diagnosed in Jan 09 at the age of 5. His only true symptoms were a distended belly and short stature. Then he started complaining of belly aches so that triggered his endocrinologist to do a celiac panel which was off the charts positive. Even six months into it, while he is doing SO much better, he is only 40 inches and 38lbs....he'll be 6 next month. We have similiar little boys! I hope that you can get a dx one way or another very soon!

[Maggs05]

Hi and welcome.

My ds was diagnosed in Jan 09 at the age of 5. His only true symptoms were a distended belly and short stature. Then he started complaining of belly aches so that triggered his endocrinologist to do a celiac panel which was off the charts positive. Even six months into it, while he is doing SO much better, he is only 40 inches and 38lbs....he'll be 6 next month. We have similiar little boys! I hope that you can get a dx one way or another very soon!

Thanks for replying. Yes, it does seem like we have very similar little boys doesn't it. I too hope we get some answers soon. It now seems like he is getting very tired as of late as well. Just yesterday he took a 2 hour nap in the middle of the afternoon. He hasn't napped in over 3 years.

He is also sleeping for a lot longer period at night as well, which he has never done. But with his allergies, it could be just that. IDK!

Crossing my fingers that we get in quickly, waiting is the worst part.