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Upset And Need Advice


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3 replies to this topic

#1 Rucko

 
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Posted 26 January 2011 - 07:54 PM

Hello. I'm posting here because I'm upset over a doctor's lack of awareness.

I was diagnosed with celiac a year ago. My son and daughter both were told to get the blood test; my son's test came back negative but my daughter found out she is also celiac.

However, it's my son's little boy, Joe that I'm concerned about. Joe has just turned two and has had a difficult time with asthma for this last year and is now on two kinds of steroids. He has also had numerous severe respiratory infections which needed to be treated with antibiotics.

Yesterday I asked my daughter-in-law if he has been tested for celiac, but the answer was no. Apparently their doctor thinks that my grandson doesn't need to be tested because he's not displaying 'failure to thrive'.

I thought that people with an autoimmune disease were supposed to get tested for celiac anyway, especially if they have relatives with it?
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#2 rosetapper23

 
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Posted 26 January 2011 - 08:07 PM

This type of situation always upsets me! I have a nephew and niece whose pediatrician believes the same thing, and all the while they are suffering from numerous symptoms of celiac. My mother, uncle, son, daughter, and I all have celiac, but the pediatrician my brother takes his children to appears to be completely ignorant about celiac. I would suggest that your son change pediatricians--he/she obviously does NOT understand very much about celiac disease. You are an admirable advocate for your grandson.
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#3 Marlie

 
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Posted 26 January 2011 - 09:53 PM

This type of situation always upsets me! I have a nephew and niece whose pediatrician believes the same thing, and all the while they are suffering from numerous symptoms of celiac. My mother, uncle, son, daughter, and I all have celiac, but the pediatrician my brother takes his children to appears to be completely ignorant about celiac. I would suggest that your son change pediatricians--he/she obviously does NOT understand very much about celiac disease. You are an admirable advocate for your grandson.


Doctor's have not said a word to me about getting family tested but I do know it is supposed to be done. Too many doctors are very ignorant when it comes to Celiac Disease. It's quite a shame.
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#4 Rucko

 
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Posted 27 January 2011 - 10:07 AM

Doctor's have not said a word to me about getting family tested but I do know it is supposed to be done. Too many doctors are very ignorant when it comes to Celiac Disease. It's quite a shame.

We were told that first degree relatives should definitely be tested, but I've heard that some doctors recommend that second degree relatives also be checked. What amazes me is not many doctors think of testing people with another autoimmune disease; they're told to test diabetics but just ignore all the folks who are hypothyroid, asthmatic, etc. even though there are strong links to celiac disease.

Now if I could only convince my brothers to be tested - one has ankylosing spondylitis and the other has T-cell lymphoma. But they're adults and can do what they want; it's their funeral. My grandson though, could have a much better time of it if they find out he's celiac early on. And if he's not, that's good to know too. I'm just appalled at the mind-set of the doctors who expects to see the so-called 'classic' symptoms in kids.
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