Waiting For Test Results

[Nathansmom]

This is my first post to this board. I have a 2 year old son, Nathan. For what seems like his entire life, Nate has been plagued by a "irritable tummy." He had reflux from age 2 weeks until he was about 9 months old. When he was about a year old, he started having unusually soft to very loose stools. He was diagnosed as being lactose intolerant at age 15 months and put on a lactose free diet. This has helped minimally. When I mentioned at his 2 year old appointment that his stools are still very loose and light colored, he basically told me that he might have a malabsorption problem, but since he was growing well, he wasn't concerned. My gut instinct told me something was up! Besides, the poor thing shouldn't have to live with a sore bottom from the loose stools! I took him back to his GI doctor that treated his reflux. She is highly suspicious of celiac disease. He had bloodwork done on Thursday evening. It is now Monday afternoon, and the waiting is killing me! Does this sound like Celiac? He is a happy little guy (though he was when he had pneumonia too!) Celiac seems as though it would be the diagnosis that would make all the pieces of the puzzle "fit." When do you think I can expect my test results?? Thanks!!

[KaitiUSA]

This sounds like it could be celiac. Do you know which tests he had done? Some are better than others for diagnosis. I got my good blood tests back within a week I believe.

[Jnkmnky]

It took about a week for ours. In the meantime, are you feeding him a gluten free diet now that he's had bloodwork done?

[Nathansmom]

He had about 7 different blood tests and about 4 different stool tests. I believe they were the ones i've seen listed on this board frequently. You would think that I would have written them down, oh well. I think is GI doc is great...so hopefully she knew what she was doing (she seemed to). I know they are also testing him for milk, soy, and peanut allergies. A week is not that long, but it seems like an eternity right now!

[Nathansmom]

I'm not feeding him a gluten free diet right now. She made no mention of doing that, and if they need to do a biopsy....then I don't want to mess that up!

[KaitiUSA]

Well if she did the complete panel then I think that would be sufficient. The tTG (a specific test for damage) is a great test and is beginning to take the place of biopsies in kids.

If you plan on getting more testing though keep him on gluten

[Nathansmom]

I wish I had written down exactly what tests were done! I know better, but I had a tired 2 year old who had been waiting form about 3 hours, and no nap! That's enough to cause me to forget just about anything! Still, I could kick myself for not writing them down!! Thanks for all your help.

[Jnkmnky]

Find out from your dr if she thinks he can begin a gluten free diet now or if he should wait any longer. I've heard that testing on a young child can be inconclusive, anyway. Sometimes a dietary change reveals the best results. I'm all for diet being the final verdict for one reason in particular. My son was dx at three. He did suffer some learning problems as a result. He's been held back one year. He's been in speech for two years so far and will be in speech again next fall. His gross motor skills lag behind his peer grp (which is already a year younger than he is as he was held back), and his fine motor skills were delayed as well. I think the impact on a child is underestimated and should be a concern. Now, don't flip out and think your child will be completely harmed by waiting a reasonable amount of time to figure out all that's wrong with him. There are pluses to waiting if everyone's agreeing that a prompt dx is the goal. My experience with my son was three years of taking him into the drs and getting the run around with the "Every child is different" line of bunk. My son hadn't formed a complete sentence by his third birthday. Four days gluten free, and he was speaking in complete sentences and actually aware of the world around him for the first time. He wasn't functioning because he was starved. This fact had a big impact on his development. But I'm not trying to be an alarmist...even if I sound like one!

[Nathansmom]

Thanks. I'm really not at all concerned about Nate's development as it is right now. He speaks a ton, and all other areas of development are fine. His GI doc is great in my opinion. She was the one that mentioned celiac...I really thought it would be the whole "paranoid mom" thing. She ordered all the tests, and said just to wait for the results to come back. I don't think waiting another few days is going to matter, especially if he needs a biopsy. I'm still holding out hope that this is not what it is, but in reality, it could be much worse.

[Jnkmnky]

Well, THAT'S good! When I look back on our experience, I can't believe our docs didn't think of SOMETHING that could be wrong with my son. He was soooo sick. For three years....soooo sick. I brought him to drs at least once a month. In the end it was nearly every day for a month that I brought him in. Thank goodness someone finally thought back on the blurry memories of med training and came up with celiac disease. I'd never heard of it.

[Guest nini]

The biopsy is not necessary for a dx. If the blood tests are inconclusive I still suggest trying the diet. A positive dietary response is just as valid a diagnostic tool as any other. If his dr. insists on a biopsy, ask why. Dr.s need to be questioned on the necessity of cutting on children when they are too young for major damage to have occurred in the intestine anyway. The celiac panel of blood tests is very specific, so that should give you some answers, but even still, with the symptoms you've described it would not hurt to try the diet. There is no negative ramifications for starting a gluten free diet. Unless you are dead set on getting a biopsy done if the dr. says so. In that case you would have to keep him on gluten. IMHO why prolong his suffering?

[Nathansmom]

Believe me, I don't want him to have to undergo the biopsy. I have quite a bit of medical training myself, and so I definately don't mind questioning the docs....it comes with the territory (especially when you're a mom). As for prolonging his suffering....he's not! I took him to her, not because he doesn't feel well, but because he has really loose, mucousy, stools that burn his behind. He is active, happy, and a content kid. As for the bad diaper rash from the loose stools...the diaper rashe is gone. She prescribed this "concoction" that is suppossed to bind with the acid in the stool and neutralize it. It has been a life-saver. She is really great. I don't want to delay starting the diet if it is necessary, but I want the blood work back first. If he was unhappy and hurting....I would have started it Thursday when she mentioned celiac disease.

[Jnkmnky]

Maybe he's gluten sensitive. Have you read the book Dangerous Grains? I got it a couple of weeks ago, and the information was very revealing. I've gotten blood tests for the entire family...we're all not celiac disease, but are now all gluten free.

[Guest nini]

Cool, you sound like you are on top of things!

If you need any help with ideas for implementing the diet when ready, feel free to PM or E-mail me.

[Nathansmom]

Thanks! I really believe (not that I want this) that he has celiac disease...not just sensitivity. It just "fits" to well. It explains the lactose intolerance that is rare for this age group, and has only been helped a littel with the lactose free diet. It explains the stools, and the fact that he's only in the 5th percentile for height when his dad is 6'2". So one more question....if Nate does have celiac disease....do his father and I need to get tested too??

[Jnkmnky]

You do indeed need to be tested. And all your future children. And all your close relatives should be told to get tested.