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Has Anyone Had A Second Opinion On Their Biopsies?

Tritty

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Tritty Rookie
Tritty
Posted

OK - so I'm really confused :)

My son is 17 months old and keeps getting smaller and smaller on the percentage scale. Soon he's going to fall off of it :(

Anyway, my ped sent him to a ped GI and they've tested his ttg's etc a couple of times - and no positives (Not surprising since he's only 17 months). HOwever, they went ahead and did an endoscopy two weeks ago b/c he has the gene and isn't gaining weight, has a distended belly, etc. They said they thought everything looked normal, but had to review the actual biopsies. When reviewed they found that he has eosinophilic esophogitis. WHite blood cells in the esophogus that I guess make the esophogus constrict and harder to eat. Usually caused by many food allergies. So they did the RAST test and only milk came up as a MILD allergy. NOt enough to cause the eosinophils (they think). His doctor ordered my biopsies from the lab that processed them to compare mine to his. He is curious if I really have eosinophilic esophogitis and not celiac. However, my ttg's were high. ANd my biopsies were done 6 weeks after I started my diet (I was losing too much weight to wait - so I'm afraid they won't see what they need...). But I guess if I am responding so well to my diet and I show the eosinophils that it might show some relation between the two? There is a Dr doing research as celiac presenting itself in this way. Does anyone know anything about it? Or anything about eosinophilic esophogitis?

THANKS!

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ravenwoodglass Mentor
ravenwoodglass
Posted
OK - so I'm really confused :)

My son is 17 months old and keeps getting smaller and smaller on the percentage scale. Soon he's going to fall off of it :(

Anyway, my ped sent him to a ped GI and they've tested his ttg's etc a couple of times - and no positives (Not surprising since he's only 17 months). HOwever, they went ahead and did an endoscopy two weeks ago b/c he has the gene and isn't gaining weight, has a distended belly, etc. They said they thought everything looked normal, but had to review the actual biopsies. When reviewed they found that he has eosinophilic esophogitis. WHite blood cells in the esophogus that I guess make the esophogus constrict and harder to eat. Usually caused by many food allergies. So they did the RAST test and only milk came up as a MILD allergy. NOt enough to cause the eosinophils (they think). His doctor ordered my biopsies from the lab that processed them to compare mine to his. He is curious if I really have eosinophilic esophogitis and not celiac. However, my ttg's were high. ANd my biopsies were done 6 weeks after I started my diet (I was losing too much weight to wait - so I'm afraid they won't see what they need...). But I guess if I am responding so well to my diet and I show the eosinophils that it might show some relation between the two? There is a Dr doing research as celiac presenting itself in this way. Does anyone know anything about it? Or anything about eosinophilic esophogitis?

THANKS!

If memory serves me eosinophilic esophogitis is one of the findings for celiac. Gluten will also not show up on a RAST test as it is an intolerance and not a true allergy. I would stick with the diet for a while before deciding that you both don't need it.

tabdegner Apprentice
tabdegner
Posted

A friend of mine had a second opinion on a biopsy. She went to a celiac specialist in Chicago. She said that the doctor looked at her biopsy and could immediately tell that they cut it the wrong way. Apparently with a celiac biopsy, it has to be cut a certain way when they take it. The new doctor said that because they cut it the wrong way, they cut off the portion that would have shown damage. He said that she most likely did have celiac -- he could see that it was probably damaged in the biopsy, but very very hard to see.

I would really like a second opinion on my biopsy as well. We may move to the Chicago area in a few months, and I'll probably get a second opinion, too. I had no idea that the celiac biopsies had to be cut differently than a normal biopsy.

Anyone else hear of this?

Tritty Rookie
Tritty
Posted
  • Author

No, I had not heard that they needed to be cut a certain way. I think he may just think I have this on top of celiac - or that this is how some of my damage from celiac showed. And if it is - since he doesn't have any of the other damage - they would assume he has celiac too. Does anyone here have both - or is this how anyone's presented itself?

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