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Need Advice About My Kids


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17 replies to this topic

#16 Mom-of-Two

 
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Posted 09 August 2012 - 05:57 PM

^^^ Just beware if the second opinion tells you the same! I felt the same way after our pediatric GI told us she doesn't have celiac, "if" she does it is latent celiac and you don't need to change her diet, just need to re-test every 6 months and watch for symptoms. I was unhappy with that advice, obviously, so off we went to the Cleveland Clinic, where my own celiac dr is, lo and behold, this fabulous guy had the same opinion! He did her tTG over and tested EMA, vitamin D, iron, CBC. He also requested the biopsy slides and his pathology double checked them, all normal. He said to me I simply cannot diagnosis her with celiac, with a normal biopsy. I was beside myself! I have celiac, my kid has the antibodies, and COULD have damage for all we know, since it is often so patchy in children.

If I understand correctly, doesn't EMA coorelate to intestinal damage? Would a child with normal healthy villi have endomysial antibodies?
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#17 AGH2010

 
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Posted 09 August 2012 - 07:12 PM

^^^ Just beware if the second opinion tells you the same! I felt the same way after our pediatric GI told us she doesn't have celiac, "if" she does it is latent celiac and you don't need to change her diet, just need to re-test every 6 months and watch for symptoms. I was unhappy with that advice, obviously, so off we went to the Cleveland Clinic, where my own celiac dr is, lo and behold, this fabulous guy had the same opinion! He did her tTG over and tested EMA, vitamin D, iron, CBC. He also requested the biopsy slides and his pathology double checked them, all normal. He said to me I simply cannot diagnosis her with celiac, with a normal biopsy. I was beside myself! I have celiac, my kid has the antibodies, and COULD have damage for all we know, since it is often so patchy in children.

If I understand correctly, doesn't EMA coorelate to intestinal damage? Would a child with normal healthy villi have endomysial antibodies?


Aha. So even the celiac experts feel that way... I do wonder whether it's worth it for me to drive the 2 hours with my 2 year old just to hear the same thing.

I don't understand how the antibodies could not be harming her, esp since her ttg count had gone up considerably when she was retested just 6 weeks after she was first tested.
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#18 Rachel Kokosenski

 
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Posted 14 August 2012 - 10:29 AM

Be careful with all that Miralax. It can do damage to their intestinal wall lining! My son, age 8, also suffered with lots of constipation. We went gluten-free, casein-free in Nov. 2011 and it took until about May 2012 until we saw very clear changes in him. He still battled with constipation for a very long time, until we took rice out of his diet and then he started going daily (without the help of Miralax)! We also use a homeopathic remedy, Secretin, that is actually a prescription from our special pediatrician.

My advice, and I'm not a doctor, would be to find either a pediatrician that specializes in the "autism diet" of Gluten-free Casein-free, and/or a pediatric gastroenterologist that understands the gastrointestinal issues associated with Autism. (I realize your children may or may not have autism, but these specialists are very knowledgeable about all sorts of autoimmune diseases.) I personally found that regular doctors and dietitians don't "get it" and think the kids will be fine with some apples...
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