Frustrated With Results, Where Do We Go From Here?

[Pennyb]

This is my first post, but I have been monitoring this message board for about a year and have found it very helpful.

My 15 year old daughter was diagnosed with Celiac March 2006. Positive Intestinal scope and positive blood tests. She has been on a gluten-free diet since the diagnosis. She tries to be very careful with her diet, as she is very sensitive. She improved after starting the diet, but has been increasingly sick since November 2006. She made it to 3 days of school between Thanksgiving and Christmas. We thought she was continually getting the flu and every other virus that circulates. She would go to school for a day and be out sick for four days. We have tried half days of school, because she doesn't have the energy to make it a whole day, but this hasn't worked well either. We figured with the immune system being weak that it makes sense that she catches everything that comes around, but now are questioning when it will end.

She has tried L-Glutamine, Digestive Enzymes, and Probiotics, but these don't seem to make her better or worse. She is continually in pain and having stomach cramps. We had a sonogram of the abdomen last week, and also a HYDA Scan on her gall bladder. We are meeting with a surgeon tomorrow to discuss the results and look into removing the gall bladder. There is history of gall bladder problems on both sides of the family.

Personally, I don't think that her problem is from food at this time, (I may be wrong), but she hasn't eaten anywhere but at home for a long time. And is living on mostly hamburger, eggs, vegtables, rice & Chicken.

Any comments or suggestions would be appreciated.

Penny

[Nic]

Could it be an intolerance to something else (eggs, dairy, etc.)? My son was diagnosed almost 2 years ago. Last school year (which was within his first year of diagnosis) he caught everything that came his way. I think I even posted on here my concerns asking if anyone else saw this with their children and is it immune system related. Good luck, sorry can't offer more.

Nicole

[chrissy]

have you done follow-up blood work to make sure her antibody levels have dropped?

[Ursa Major]

Unfortunately, she could also be intolerant to all lectins (gluten is one of them). Rice and eggs produce symptoms almost identical to being glutened for me. I seem to be able to tolerate some yogurt finally, but no other dairy.

Check out my lectin link in my signature for more information on lectins. It would be a bummer, but better than being sick all the time.

[Pennyb]

have you done follow-up blood work to make sure her antibody levels have dropped?

We've had 4 different sets of blood tests in the last 2 months and everything comes back normal.

Penny

[TCA]

Have you eliminated all lotions, soaps, makeups, etc. that might not be gluten-free? We ran into something similar with my daughter. She was doing great going gluten-free, then started having problems again suddenly. I had boughts some curel lotion that had Oats in it to keep by the kitcen sink. I was going through reciepts one day and noticed I had bought it about the time she started having problems. After discovering this, I went through the entire house and got rid of everything with gluten and she's done well ever since.

Another train of thought might be to get allergy testing done. Just a thought....

Good luck and Welcom!