We need to be our own best advocates. I’ve been saying that for years.
We simply cannot trust that the doctors word is final. Because far too often…it’s wrong. Especially when it comes to celiac disease.
If you have not already, check out the doctor horror stories. I suggest you do not read them on a full stomach.
And we need to be even stronger advocates for our kids. Many doctors will simply dismiss a child’s symptoms if they don’t fall within the “normal” range of celiac symptoms. Is this due to laziness? Arrogance? Lack of knowledge? Ummmm…yesx3.
A case in point comes from this exasperated mom whose doctor’s simple refusal to listen to her could have had disastrous consequences.
Exasperated mom…the Dude’s floor is all yours.
Grrr. Another doctor Rant.
I was DX 5.5 years ago while pregnant with child #2. I had none of the “typical” symptoms – I was severely Anemic, (my hemoglobin was in the 70s) and my voice was gone from acid reflux. My GP did a tTg and it was 182. Boom, no more gluten for me – no biopsy due to the fact that I was pregnant.
I have 3 children. Each year at their medicals, I have asked the Dr. for the blood test “to be safe”. Each year the Dr says that they have none of the symptoms and there is no reason to be concerned.
My oldest has had some problems over the years – he refused to go to the bathroom for a bowel movement so it would back up and force it’s way out. The he would have painful bowel movements. He is a very emotional child. He cries a lot. He just doesn’t “fit in” with his classmates. And, he can not sit still or pay attention to anyone for long.
Although none of those are typical symptoms, I have seen each one in different ways listed as a sign. So, this year I asked for the genetic test to be aware if they were carriers. It turns out that in Canada, those tests are not available . So, he did finally agree to do the tTg.
My son’s tTg level is 3500! Yes, Three Thousand Five Hundred. And a positive is 10. So, I have been feeding poison to my son for years.
The Dr. also gave us a RX for something else that he should take for 6 months or more. I went to fill it and asked if it was GF, the company cannot guarantee if it is or isn’t. Now the Dr says to see if the GI will think it’s ok.
Um, no. There is NO gluten allowed in GF diets. He will be GF 100%.
When will the Drs. learn that kids DO NOT need a “starvation” belly to be celiac!
That’s what he kept telling me that kids need to have to be Celiac.
Thanks for listening.