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buttermom

Diagnosing A Toddler

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Hi everyone,

I just got home from the pediatrician, who has referred my son (15 mos.) to a GI doctor to start exploring the possibility of Celiac Disease. So I'm brand new to this forum as well. I have read a bit about eliminating wheat/gluten from his diet, which I will begin to do (although it is a bit daunting at the moment).

Anyway, can someone please explain to me the options we have for diagnosing such a young child? Is there any alternative to the biopsy? I would really like to avoid that if at all possible, at least until he's a little older. I'd prefer to be fully informed when we go to the GI doctor, and would really appreciate any responses.

Thanks!

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www.enterolab.com

You'll find this lab periodically mentioned on this site, but it is unknown to much of the medical community. It is a non-invasive test. Order the test online ($375 or so for full test), they send you the packaging for it, for a toddler you dump a couple diapers in a bucket, and then you overnight it back to the lab. Results in 2 weeks or less. It's AWESOME. Our whole family (5) did this in Feb/Mar 2007 and our lives are SSOOOO improved because of it. Best money we ever spent...and it was so easy. We highly recommend them to everyone.

God bless and stay tuned here as there is a lot of info shared.

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FYI: Do NOT stop feeding your child gluten until you see the gastro. The child must be consuming gluten to get accurate test results. I know it is hard to do, but let the Dr see your child on gluten first and discuss your options. Bloodwork is frequently off. The biopsy is the gold standar for diagnosis, however, it can be harder to get a good biopsy on young kids. Talk to the gastro.

I have heard great things about EnteroLabs too. My youngest had the biopsy, it was inconclusive. She has the gene. She is gluten-free/CF now and much better. I may pursue the ENteroLab test to get a solid diagnosis on her - family needs that and I would prefer it.

The biopsy sounds horrible, but it is not. It is very quick. Not painful at all. (I had the biopsy years ago) My daughter had her biopsy at 2yr old. They gave her some medine, she fell alseep on me. The anastheiologists carried her into the OR like one of his own kids. She cuddled up on him like she was going to take a long nap. And she was extremely clingy to me at this point. Within 30 mins she was awake and ready for us. Walked into the recovery room and she was sitting on a nurses lap eating a popsickle and quite happy. Literally the worst part was removing the IV and that took just a second. They inserted it after she fell alseep.

Good luck. Ask more questions if you need to :)

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Thank you both for your replies. I had not thought of keeping him on gluten until he sees the gastro, but of course that makes sense. I think we may not be able to get an appointment for a while, so this will be hard-- I'm so anxious to see if he does better gluten-free.

So, if I understand correctly: the biopsy is considered the very best/most accurate way to diganose, but the enterolab test is a decent alternative if I am wary of doing the biopsy or if for some reason the biopsy is inconclusive?

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I think you should read some more of these threads. In my opinion I hold out little hope that a biopsy would be positive in a child so young, unless the child is showing severe symptoms & is lethargic etc.

& the blood tests are not accurate. AND, if you have to wait any length of time to see a GI, you could be damaging your child at a crucial time of development. I think that you should research these issues and make your own decision. If you are a person that does not have to wait for a doctor to tell you what you should be doing to keep your child healthy, then you should be making your own decisions based upon the daily, 24 hour, observation of your child. We may not have a doctor's degree, but we can read and we know our own bodies and those of our children, that allow us to make informed decisions about our dietary needs...

I also highly recommend Enterolab.com

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I would recomend waiting to go gluten free at least until you have spoken to the GI...that way he can see what is really happening with your son...and even after you have spoken to him you still dont have to have the biospy and can go gluten-free, but this is a personal decision for you and your family.

But it will be a lot easier to leave him on gluten now than to have to consider doing a gluten challenge later.

In march my dd had the blood test and while I was waiting for the results I put her on a gluten free diet, which really did work so my Dr refered me to a Pead GI even though the tests were negative...however when I finally saw the Gi it turned out the blood work was incomplete and the results unreliable.

So I have now had to make the hard choice to put my daughter back on gluten for three months and then do the biospy...and believe me after having a well daughter again it is heart breaking to make the choice to make her ill again for three months...but for me and my daughter (shes 10) we want to know if it is coeliacs for our own peace of mind...so we start the challenge in january and do the biopsy in march and I wish everyday that she had still been on gluten when we saw the GI.

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So, if I understand correctly: the biopsy is considered the very best/most accurate way to diganose, but the enterolab test is a decent alternative if I am wary of doing the biopsy or if for some reason the biopsy is inconclusive?

From our experience, although painless for my 4 year old daughter, it was NOT painless for me and my husband. I understand it was necessary to do and I support it (biopsy) 100%, but all experiences are different. (to preface, I do these exams-endoscopy-for cardiac visualization daily, so I have a TON of experience with these procedures) We had it done at the children's hospital here in Portland, the staff was AMAZING, they used the novacaine cream on her hands for the IV placement which didn't work because they couldn't locate a vessel in either hand so they had to use the antecubital (crook of elbow), so she screamed like she was being murdered (whether it really hurt that bad...???), before they gave her the meds, they told us to be aware that in 10 seconds she was not going to look like our child. In ~10 seconds, her head rolled backwards and she saw my husband upside down and started laughing hysterically. I saw the way her eyes looked (indeed she did NOT look like my child but like something posessed) when I saw this, I panicked, her head then rolled towards me and she must have seen the look on my face and proceeded to cry hysterically. It was then that the Dr gently took us out while I was sobbing-and continued to cry until they came to tell us she was done. She remembers NOTHING. The only thing she remembers is playing in the huge playroom with the other kids at the hospital. It did not traumatize her, but it did me. I'm not telling you this to scare you, but to be aware that there are different reactions.

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