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Ttg Positive/biopsy Inconclusive

juliea(australia)

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juliea(australia) Newbie
juliea(australia)
Posted

Hi everyone, My son who has type 1 diabetes went in for a biopsy following an elevated Ttg screen, the other tests were negative. The biop was inconclusive. The gastro doctor thinks it is celiacs and wants to treat it as that for 6 months and then repeat the biopsy. If the inflammation has not gone then it could be something else but he wouldn't go there!!!!! My son has had no symptoms and i am really worried it may be something else that is worse! Has anyone else has this sort of experience???

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Guest nini
Guest nini
Posted

if the blood test was positive, I wouldn't worry about another biopsy. Seriously. Go ahead and put him on the gluten-free diet 100% no cheating, and don't look back. In children (and in some adults) the damage isn't significant enough yet for it to show on biopsy, or they didn't get enough samples and just missed the damaged areas because it can be sporadic. If he saw inflammation, this could be indicitive of Chrons or Colitis (which in my opinion is also related to celiac and if caught soon enough and treated with the gluten-free diet will go away) So, DON'T PANIC, don't worry about another biopsy, tell the Dr. after you start to see improvements in his health on the diet, that you want him to dx positively based on blood work and positive dietary response. It is sufficient.

The ONLY reason to have a follow up biopsy would be if he DOES NOT improve at all in that time. Also, six months is a fairly short time, but in kids you should see tremendous results in that time. In adults the average healing time is about 2 years or more depending on how much damage. But since kids haven't had enough time to accumulate a lot of damage (unless they already are in the advanced stages of the disease) they heal so much quicker.

VydorScope Proficient
VydorScope
Posted

I am not a doctor, nor do I prentend to be one, however I have a degree in statistics and this gives me a better understanding of testing and test results then problably most doctors.

The Biopsy, IMO, is a poor diagnostic tool. It can only CONFIRM celiac disease, it can never, ever, under no known conditions ever rule out celiac disease. This means you will gain no NEW information by it. If you have a postive blood test there is , IMO, no reason for a biospy. There are other good reasons for endoscopies, to look for OTHER conditions, but as relateted to celiac disease, the biopsy is a poor outdate choice that I hope goes away soon.

Again, I am not a doctor, nor have I stayed in a Holiday Inn Express recently. :D

I would highly suggest you follow nini's advice :D

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