Ovarian Cysts And Gluten Sensitivity

[arevene]

I have an 8 year little girl with a grandmother with Celiac and many other family members with Gluten sensitivity. My daughter is always hungry and eats all the time and is thin. I have blood tested her for Celiac at Children's Hospital in Boston 2 times and it has come back negative both times. Last fall she complained of severe belly pain and an ultrasound found large ovarian cysts. She had 8 in total with the largest the size of a grapefruit. She only weighs 60 pounds so this took up her entire abdomen. These cysts are unrelated to a menstrual cycle becasue she is a little girl and not even close to puperty. The Pediatric Gyn at Children's in Boston removed the cysts laperotomy and they were not cancerous but are the type that grow back. 3 months later they grew back and we are faced with more surgery. It is so rare that the best doctors at Children's in Boston can only tell me that he will take them out every time they grow back which could be every 3 months. He does not have any idea how to stop them from growing. They are not the kind of cysts that burst or disappear. I went to a Naturopath Doctor because Children's in Boston could not help me. We again tested for Celiac through stool and check swab. The test came back with Gluten Sensitivity and also a Celiac gene and the Gluten Sensitity gene. She has low energy, dark circles under her eyes, learning issues, belly aches and cysts on her ovaries. Has anyone out there ever seen a correlation between ovarian cysts in such a young girl that are unrelated to a women's cycle and gluten or Celiac? I am planning on doing an endoscopy to do a biopsy. I would greatly appreciate any help all you wonderful people that know so much about this disease!

Amy

[Ursa Major]

The endoscopy and biopsy are a good idea if they can be done quite soon, as you can't start a gluten-free diet before the biopsy, because that would guarantee a negative biopsy, even if it would have been positive before.

I suggest you try the gluten-free diet immediately after the biopsies are taken, regardless of the results. I don't think I have heard of ovarian cysts on a little girl before, but the other symptoms sure fit celiac disease. And those biopsies are not that accurate, even if negative they can never rule out celiac disease.

Poor little one, she is the same age as my oldest granddaughter, and it would break my heart to see Emily suffer the way your daughter does. I hope she can be helped soon.