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Another Opinion

bellac

By bellac
in Doctors

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bellac Newbie
bellac
Posted

Hi, my daughter was diagnosed with celiac about 8 months ago - she is almost 5 years old now. Her diagnosis was unexpected (she's not a good pooper and the GI was going to send her to a child psychologist but wanted to run routine bloodwork so that he could tell the psychologist he had. She had gotten herself very backed up from holding her poops in). Her diagnosis was via bloodwork and endoscopy, however, everything was very "gray" regarding the diagnosis. For instance, there was no physical damage the doctor could see during her endo - after 4 years of eating gluten wouldn't there have been some phsycal damage? The biopsy came back showing "early signs of celiac"? And when I asked the GI if that means she has celiac, he said "for all intent and purposes yes" but he also made it sound like we were going to do a trial run on having her eat gluten-free. My dh and I have had our daughter on a complete gluten-free diet since the diagnosis and haven't noticed anything difference.

I am not in denial if she has it, we'll continue to deal with it. However, every thing has been very wishy-washy with her diagnosis and there doesn't seem to be any changes in anything with her (and that's because there were no real signs of it prior to the diagnosis).

We are looking for some insight or options to validate this or something. I take her back to the GI in 2 weeks and have all these doubts.

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Marc1 Rookie
Marc1
Posted

For people that are diagnosed very young, there is simply not enough time for major damage to occur. What doctors usually look for is the effect of cumulative damage, hence there is over a 90% false negative misdiagnosis rate in the US for people under 40, I got a false negative when I was a kid and got my growth stunted a bit, since I was eating wheat for an extra two years. One of the reasons the misdiagnosis rate in the US is so high, is that until a few years ago, the American medical association defined a positive case of Celiac Disease as having major intestinal damage. Hence thousands were told they did not have Celiac Disease, continued on a wheat based diet, and some died from complications like intestinal cancer. Their new definition takes into account the allergic and genetic components of celiac disease, but many doctors went through school with the old definition and have not kept up, hence you still have people like my old doctor, saying EAT WHEAT and DON

T.H. Community Regular
T.H.
Posted

Another issue with a young diagnosis is that in children, I understand the damage can come in 'patches' rather than an even distribution. In that case, if the doctor picks the wrong 'patch,' the damage can be missed. And many times, the damage isn't visible to the camera, only under the microscope, so picked the right spot can be difficult.

However, I believe the following information is incorrect.

Also, from the genetic component of celiac disease, you need two copies on the gene complex, one from each parent...

According to an article here on the site, you only need one gene to be able to get Celiac disease, if I'm reading it right. ( https://www.celiac.com/articles/21567/1/Ten-Facts-About-Celiac-Disease-Genetic-Testing/Page1.html )

However, I would second the encouragement to get tested, and to get any siblings of your little one tested, if they exist. Testing relatives of a diagnosed celiac, even without any known symptoms, is how we figured out my daughter had celiac disease. And you should probably get retested every 5 years or so, as this disease can trigger at any time in your life (often, again, with no symptoms that you'd recognize as celiac disease). So at least one of you is likely to eventually develop this disease as well, even if you are both negative right now.

  • 2 weeks later...
bellac Newbie
bellac
Posted
  • Author

Another issue with a young diagnosis is that in children, I understand the damage can come in 'patches' rather than an even distribution. In that case, if the doctor picks the wrong 'patch,' the damage can be missed. And many times, the damage isn't visible to the camera, only under the microscope, so picked the right spot can be difficult.

However, I believe the following information is incorrect.

According to an article here on the site, you only need one gene to be able to get Celiac disease, if I'm reading it right. ( https://www.celiac.com/articles/21567/1/Ten-Facts-About-Celiac-Disease-Genetic-Testing/Page1.html )

However, I would second the encouragement to get tested, and to get any siblings of your little one tested, if they exist. Testing relatives of a diagnosed celiac, even without any known symptoms, is how we figured out my daughter had celiac disease. And you should probably get retested every 5 years or so, as this disease can trigger at any time in your life (often, again, with no symptoms that you'd recognize as celiac disease). So at least one of you is likely to eventually develop this disease as well, even if you are both negative right now.

We will be getting our other daughter tested, the doctor said to wait for a year though.

Thanks for some of the input.

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