5-Yr-Old ... Need Help

[LittleTee]

Hi there,

I am self-diagnosed with a gluten sensitivity, possibly celiac but not sure. My family is trying to move to a gluten-free diet, as my 5 year old son seems to respond well to it, but they do eat gluten products regularly.

At my son's last check-up I asked my doctor about my son's stools (sorry if TMI), which are yellow-beige coloured, loose and bulky, and that his stomach distends after some meals (usually with gluten, IMO). She said that since he's not complaining of stomach pain or failing to grow (he's about 45 lbs, tall), it's probably just his system adjusting, and not to worry about it, he can eat either way.

Well, now he is complaining about stomach pain. Last week the school called and he was crying due to stomach pain -- this was about 2 hours after having a bagel at breakfast. I notice as well that his behaviour is terrible after eating something with gluten.

I want to take him back to the doctor, but I am worried I'm going to get the same answer I got before, and I've read on this forum about some of the unresponsive doctors you all have encountered. I'm also worried they will want him to go back on gluten per "normal" -- and I cannot stand to see him crying due to stomach pain on a regular basis! (we live in Canada outside an urban centre, so the wait for testing I am sure will be long.)

Part of me wants the diagnosis, but I don't want to see him in pain. And part of me also is afraid of this. It's one thing to deal with myself. But a childhood (life) of constant dietary vigilance seems like a hardship, to be honest.

Would love some advice on what to do, how to cope, etc. Thanks for your time.

[sb2178]

"his system adjusting"?! Really, fat malabsorption is abnormal.

A PCP should be able to order the blood tests, so it's probably feasible to feed some extra gluten for a few weeks then get the blood tests. If they're positive, you could consider it a diagnosis. If they're negative, you would have to decide whether to wait for a GI appointment or just do a strict diet trial (and maybe a challenge). Technically, a full challenge should have at least 6 weeks to 3 months of full gluten, but if he's still eating some, you could probably get away with less...?

I'm somewhat in favor of testing, just because the medical system tends to have greater respect and better follow-ups for those who at least do some structured testing, and because it could be something else. It's always a great idea to rule out other potential problems.

[Poppi]

My 6 year old is very healthy but eats 100% gluten free because we have a family history of celiac/gluten intolerance and he can't control his temper when he's had gluten.

It's pretty drastic. About 24 hours after he has gluten he simply can't control himself. He gets really angry about everything, screams at people and holds onto grudges over the tiniest perceived insults. That lasts for a couple of days and then he starts to calm down again. Last year in kindergarten I was called on 3 separate occasions and asked to remove him from the school grounds. SO far this year has been really calm.

[divamomma]

I am also in Canada. Your family dr can order the blood test, it is on a regular requistion. I would absolutely push for the blood test. A diagnosis will make it easier for your child to stick to the diet and will help others (including school staff) take you seriously. I know it is so tough waiting. Be strong!

[LittleTee]

I never thought of the school staff -- good point, thanks! I think I will get my doctor to do the test. If I push, she may give in. Hopefully.

Why are doctors so hesitant to suspect celiac, anyway?

[divamomma]

Mine wasn't hesitant at all! I brought my daughter in with my concerns about ongoing issues(behavior, tirednedness, constipation, lethargy, dark circles, constant hunger etc) None of her symptoms were "typical" celiac symptoms. My dr suggested running some blood work, I agreed not knowing exactly what was checked off on the requisition. Two days later she called with the results. Both the dr and myself were truly shocked. So it all depends on your dr. Many are now realizing just how varied the symptoms are. Many are now utilizing the simple blood test. However many still are not. Good luck.