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So On The Fence About Continuing On With Testing...

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Hi,

Had the Ped. GI dr appointment for my 8 yr old almost 2 wks ago. I made the appointment and of course the week of the appointment he didn't complain of stomach pain much...but still had. Continued on with the appointment and had bloodwork done. Still waiting on the results. The dr did want to do a endoscopy and we were to schedule that for about a month out. Well, I got home and didn't schedule it right away as I was busy...and then the next week rolled by and I still didn't schedule it. Well, I can tell you my son has not complained of stomach pain once since the dr appointment. He'd been having it since Valentines day. However, the last few weeks he'd been complaining less and less but still having bouts of it. Today the dr office called and asked about scheduling the endoscopy and I told her the reason I was hesitant now. She said we could schedule it and I could always cancel a few days before if he's still pain free come July 9th. Then I think...well, his father is most likely celiac...he definitely has a problem with gluten. However, he never got tested and just went gluten free on his own and found he definitely reacts to gluten and never wants to ingest it again. If he is celiac then I'd want my kids tested anyway right? just to make sure they don't have it as they'd be at a much higher risk of having it.

Ugh...decisions, decisions.

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I guess you could make an apointment and cancell. That way you don't have to wait another month if you get positive blood results. I have been diagnosed as a very adult adult (only admit to over 40). But for myself, stomach/gut issues came and went my whole life (since a child). I would definitely do the endo if the blood is positive. One of my kids gets stomach issues if he drinks too much pop with high fructose corn syrup or artificial sweeteners or too much acid ( 1 big glass of lemonade with food OK no food Ouch!). When he goes off the soda and eats yogurt, he's better in 2 days. If the blood works neg, might look at what he's eating or drinking when he has stomach issues. I'm having my boys blood tested. If negative, I will probably have them retested every year or 2. definitely if they have consistent problems.

Hope my rambling didn't confuse you further. :P

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Was your son present when the doctor was talking about the endo? The reason I ask is because if your son is apprehensive about the procedure he may be downplaying his discomfort because he is afraid of the test. Just a thought that may not apply.

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You may wish to know that, although almost all doctors still consider an endoscopic biopsy to be the "gold standard" for identifying celiac, it is oftentimes negative due to a number of reasons: the doctor doing the biopsy doesn't really know what he's doing, the pathologist may not be competent to read the biopsy, and the damage to the intestinal lining may be beyond the reach of the scope. Leading celiac expert Dr. Alessio Fasano and his colleagues will be publishing an important article shortly on why the "gold standard" should now be made up largely of blood tests, HLA (gene) testing, and symptoms (and lack of symptoms on a gluten-free diet). If any of the blood tests are positive, the HLA is positive, there are symptoms prior to testing, and the symptoms disappear when on a gluten-free diet, Dr. Fasano contends that that is sufficient to make a diagnosis of celiac disease--no need for a biopsy. Many of the attendees of the conference where Dr. Fasano spoke welcomed this information because many of us have classic celiac symptoms (nutritional deficiencies, dermatitis herpetiformis, and GI symptoms), but all of the tests were positive except the biopsies. Clearly, the competence of the surgeon and pathologist needs to be questioned, and, again, the damage may be beyond the one foot that the surgeon generally biopsies.

Hope this helps...

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