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Waiting On Diagnosis

bestofthebunch

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bestofthebunch Newbie
bestofthebunch
Posted

I have a 7 year old son.

To make a long story short, he grew normally for the first little bit of his life, although he was also a very high needs baby (and child) and still is.

I have pushed and pushed like crazy for dr's to help us, but everyone brushed me off.

Finally, 18 months ago, a pediatrician took me seriously and referred me to an endocrinologist. That endocrinologist took an x ray of his hand and that was it. After that, they told me to shove as many calories into his body as possible.

It didn't help.

I pushed until we got in to see another endocrinologist. We saw her yesterday.

His bone age is measuring 3 years behind. That's why he is so small.

He is super moody. I mean super. He doesn't eat much at all.

She took blood and I got the results, but we don't get to speak to the actual dr til next week.

Things are sort of pointing me to celiac disease. She brought it up, but I didn't think anything of it, til I got the blood results.

So, now we wait. I don't know what to do in the meantime. It's excruciating.

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      Iron loss and potential celiac.

      By trents · Posted

      Yes, it does. And joint pain is another celiac symptom that is now well-recognized. 
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      Iron loss and potential celiac.

      By ThomasA55 · Posted

      Does my iron loss sound like celiac to you?
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      Iron loss and potential celiac.

      By trents · Posted

      Being as how you are largely asymptomatic, I would certainly advise undertaking a gluten challenge in order to get formal testing for celiac disease. We have many forum participants who become violently ill when they undertake a gluten challenge and they therefore can't carry through with it. That doesn't seem to be the case with you. The reason I think it is important for you to get tested is that many or most people who don't have a formal diagnosis find it difficult to be consistent with the gluten-free diet. They find ways to rationalize that their symptoms are due to something other than celiac disease . . . especially when it becomes socially limiting.  The other factor here is by being inconsistent with the gluten free diet, assuming you do have celiac disease, you are likely causing slow, incremental damage to your gut, even though you are largely asymptomatic. It can take years for that damage to get to the point where it results in spinoff health problems. Concerning genetic testing, it can't be used for diagnosis, at least not definitively. Somewhere between 30 and 40% of the general population will have one or both of the two genes known to be associated with the development of active celiac disease. Yet, only about 1% of the general population will develop active celiac disease. But the genetic testing can be used as a rule out for celiac disease if you don't have either gene. But even so, that doesn't eliminate the possibility of having NCGS (Non Celiac Gluten Sensitivity).
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