Need Support During Diagnosis

[sam3gemini]

Hi,

I haven't been on since May...thought things were getting better, but turns out they've only been getting worse.

I need someone who might be willing to support me as I take my 3 year old son through the diagnosis process, as I am already getting the "bandwagon" look from my doctor, thinking "oh, everyone thinks they have celiac now", but the more I read, the more I'm absolutely convinced this is what my son is dealing with.

I will check back here, but I'm hoping there's someone willing to "take us on", through e-mail over what I know is going to be a long process.

my email is sjderoos@yahoo.ca, I really hope someone will feel the call to help us out....i'm sure you know as parents how frustrating this process can be. After a year of more poop than any one person should ever have to deal with :-), i'm getting tired and frustrated, not to mention heart broken from seeing my little boy hang his head in shame everytime he has an "accident" b/c he just has no control over his bowels anymore.

BTW, we are canadian, dealing with the Ontario health care system...(not complaining).

Sam

[vampella]

I am so sorry you have to go through this, I'm also in Canada (Manitoba).

I have had no problems here YET. Has blood work been done on your little one? It's so hard to watch them like this.

[mamatide]

BTW, we are canadian, dealing with the Ontario health care system...(not complaining).

Sam

Hi. Also a mom of a previously very sick little girl, now 5, who would have had to wait 9 months for a consult and at minimum 11.5 months for a biopsy in the Cdn health care system...

Please be strong. And don't hesitate to go gluten-free and stick to your guns if you do choose to do so. But one word of caution - don't go gluten-free unless you're sure you're completely gluten-free with your 3yo. I can understand why people say it's not a good indicator. Going 100% gluten-free is really difficult. Gluten sneaks in where you least expect it (cutting boards, butter dish when someone else thought it really didn't matter and you were being hyper-sensitive, shampoo, hand lotion (you eat more hand lotion that you'd probably care to believe)......

When DH and I made the decision to do a gluten-free trial with our daughter, I insisted we be vigilant about it. We got rid of the old fry pans, the old cutting boards. We washed out the cupboards, threw out the gluten-containing stuff.

Not because we are some sort of radical gluten irradicators, but because if we were going to do a trial and put any trust whatsoever in it (without medical supervision - see our medical wait times above), we didn't want to make any mistakes.

And we still made mistakes - two mistakes that we were able to trace back to ingredient listings on things that we never ever suspecte would have gluten. Literally pulling wrappers out of the garbage can as DD was on the toilet in pain.

So I encourage you strongly to pursue this but don't start counting the results until you're really confident that you're being strict or else your experiement's results won't be worth the effort.

[vampella]

Hi. Also a mom of a previously very sick little girl, now 5, who would have had to wait 9 months for a consult and at minimum 11.5 months for a biopsy in the Cdn health care system...

How do you know you would've had to wait that long? We only have 1 Ped GI in our whole prov. and the wait is about 3 months. I have no idea how long for biopsy. The kind of wait you are talking about is completely unacceptable. I'm sorry that was your experience.

I also have to agree with mama "So I encourage you strongly to pursue this but don't start counting the results until you're really confident that you're being strict or else your experiement's results won't be worth the effort." There are so many places gluten hides. GOOD LUCK.

[Sillyyakdidi]

Hi,

I haven't been on since May...thought things were getting better, but turns out they've only been getting worse.

I need someone who might be willing to support me as I take my 3 year old son through the diagnosis process, as I am already getting the "bandwagon" look from my doctor, thinking "oh, everyone thinks they have celiac now", but the more I read, the more I'm absolutely convinced this is what my son is dealing with.

I will check back here, but I'm hoping there's someone willing to "take us on", through e-mail over what I know is going to be a long process.

my email is sjderoos@yahoo.ca, I really hope someone will feel the call to help us out....i'm sure you know as parents how frustrating this process can be. After a year of more poop than any one person should ever have to deal with :-), i'm getting tired and frustrated, not to mention heart broken from seeing my little boy hang his head in shame everytime he has an "accident" b/c he just has no control over his bowels anymore.

BTW, we are canadian, dealing with the Ontario health care system...(not complaining).

Sam

i'm so sorry to hear your little boy is sick! Please hang in there, It must be so tough because he's just at the age where he knows something is wrong but doesn't know it's not his fault. Keep your head up! I hope things go quickly with the diagnoses, and in a way you are blessed that you can figure all of this out with him at such a young age...it took 20 years to get my diagnoses and it was very late by that point.

[sam3gemini]

Hi,

So did you not have the testing done then? You decided to go totally gluten free and run your own trial? I am considering this, i'm waiting to hear back about the referral to see how long the wait will be.

I am concerned about taking the whole family gluten free b/c it will be so expensive (there are 5 of us), but i don't want to botch the experiment either if we do it that way.

thanks for all of your support, everyone who replied. i'll keep you posted.

Sam

Hi. Also a mom of a previously very sick little girl, now 5, who would have had to wait 9 months for a consult and at minimum 11.5 months for a biopsy in the Cdn health care system...

Please be strong. And don't hesitate to go gluten-free and stick to your guns if you do choose to do so. But one word of caution - don't go gluten-free unless you're sure you're completely gluten-free with your 3yo. I can understand why people say it's not a good indicator. Going 100% gluten-free is really difficult. Gluten sneaks in where you least expect it (cutting boards, butter dish when someone else thought it really didn't matter and you were being hyper-sensitive, shampoo, hand lotion (you eat more hand lotion that you'd probably care to believe)......

When DH and I made the decision to do a gluten-free trial with our daughter, I insisted we be vigilant about it. We got rid of the old fry pans, the old cutting boards. We washed out the cupboards, threw out the gluten-containing stuff.

Not because we are some sort of radical gluten irradicators, but because if we were going to do a trial and put any trust whatsoever in it (without medical supervision - see our medical wait times above), we didn't want to make any mistakes.

And we still made mistakes - two mistakes that we were able to trace back to ingredient listings on things that we never ever suspecte would have gluten. Literally pulling wrappers out of the garbage can as DD was on the toilet in pain.

So I encourage you strongly to pursue this but don't start counting the results until you're really confident that you're being strict or else your experiement's results won't be worth the effort.

[sam3gemini]

[quote name Has blood work been done on your little one? It's so hard to watch them like this.

[Momof3boys]

I would just say to stick with it. My son started having diarrhea 6 times a day when he was 2. We finally got referred to a bad GI doctor and she said he was too big of a kid to have celiac's disease so she didn't test him (I thought she had). Welll a year later he was 3 and still not potty trained and having a combo of diarrhea and contstipation. So we took him to a different doctor and they did the blood test and biopsy and low and behold he did have. And now I have been diagnosed as well. So I would stick with it and trust your instincts even if he doesn't fit the "classic" case. My son didn't, and he definitely has it. And at age 4 we are still having problems with potty training and I think it is because he is old now and missed the "bet" time to potty train!

[naturalmomma]

I have been blessed cause I have an awsome doc. Kids brain development is crusial and waiting forever for diagnosis when clearly it is the prob is dumb. My doc also says that most of the time the test comes out negative regardless. My oldest jonah is autistic/ turettes /adhd and responded well to gluten/casein free. Middle has poopy problems and behaviour and is short stature ,he is responding well. my littlest boy, yes three boys, was 16 pound and 15 months and has started to grow. I also have celiac disease,interesting how it can affect kids in so many different ways!! i understand some people need that diagnoses and to rule out other problems and Im all for that,but we as moms are the best judge of things and know what is best. I didnt want to go spend lots of time waiting while my kids got sicker, I knew that was the prob. I am also from canada,ut if i really need that comfort of a diagnoses i will send it to enterolabs, less invasive and faster. My doc is all for that way of doing it,and pretty obvoisly that was the answer,however its not the answer for everyone sothe tests are obviously needed but there should be a better and faster way!!