My daughter (16) has been placed on a gluten free diet to see how she responds. She hasn't been diagnosed officially yet, the biopsy indicated possible celiac disease, lack of absorption of nutrients. However, the blood tests were negative. The ped GI put her on a GF diet 1 1/2 months ago, we are having mixed results. He said to stay on for 2 more months and add high fiber and come back. She is determined that this isn't what is wrong because it hasn't "cured" her. I see some positive results, but the major problems still exist. She has been very good on the diet, if she is still getting gluten, I'm not sure where. I am at my wits end, I want to know what is wrong and be able to get relief.
Our story: She was a very healthy baby, but couldn't hold down anything well. She spit up almost everything she had in a bottle (breast milk and formula). We couldn't find a formula that worked well, the best were soy formulas. I assumed she was lactose intolerant. She has never done well with milk products, but the doctor said biopsy results say she isn't lactose intolerant. Additionally as a baby her bowel movements were "toxic". They were very loose and they "burned" her bottom. If her diaper wasn't changed immediately she had the worst diaper rash you've ever seen and it appeared that acid had been poured on her bottom, it would sometimes bleed. I had to use special diaper rash ointments, the regular stuff didn't work. Other than that she progressed in weight and height as a normal child, she was slightly smaller than her 2 older sisters. She was very healthy, until 3rd grade. In 3rd grade she started having problems, she started gaining weight, started having more health problems, and started having problems with depression. Since that time she's been seeing a therapist and now a psychiatrist for depression. When she was 12 the major problems began, she started having blood in her stools. At the same time she also had a small cyst on her ovary which caused a lot of pain. The GI doc looked for the whole year of 2006 to find the source of the blood, he never could. He did all kinds of tests, including a colonoscopy and endoscopy, nuclear tests, stool studies, etc. His next plan of attack was the video pill. However, suddenly in November of 2006 she seemed to get better, the blood disappeared, so we didn't pursue it any further. At this time she also started having severe headaches (migraines), severe stomach aches and fatigue and she was gaining weight. Last year (2008) she started having problems again. In the spring she started having stomach pains, then the bleeding started in April or May. Then in late May she started having menstrual bleeding that wouldn't stop until they finally found a birth control pill strong enough to stop it in August. We went back to the GI doc, he did a CAT scan and found nothing and said if she got worse to call him. This continued until March of 2009 (same problems, headaches, fatigue, weight gain in large amounts at a time, stomach pain, bowel problems, bleeding), when she had an episode of incapacitating pain and a lot more blood and non-stop vomiting. We went back, he did the colonoscopy & endoscopy with biopsy. He also did another CAT scan with nothing showing up. This time he said the biopsy showed that she wasn't absorbing nutrients and he took the blood tests to confirm celiac (but they were negative). He put her on GF diet anyway.
I have read up and most every symptom she has goes with CD. On the GF diet she's lost about 20 pounds, she has less fatigue, she doesn't pass gas near as much as before and it doesn't really smell bad as it had before, the vomiting stopped (the constant vomiting had stopped after seeing the doc in March, but she continued to vomit and have nausea a few times a week). She still has the headaches, she has less stomach pain (hardly any), but she still has the blood in the stool. When we went back after 1 month he said to continue the GF, but with high fiber to try to get the bleeding under control. He said if it still continues he's going to probably go ahead with the video pill. Could it still be celiac even though we haven't had great success with the diet? Everything I've read seems to indicate that most people have wonderful response within a short period of time after starting the diet. I had hoped this would be the case. The blood really worries me, it isn't a small amount, it isn't huge, but this has been going on for quite some time. She became very anemic for awhile, I think she's ok now. I really thought it was celiac, it would explain so much. Our family seems to have a lot of digestive problems, we have notoriously bad gas that is very foul, which seems to be a major symptom. My father had to have part of his colon removed a couple of years ago, not from cancer, but other colon problems. I have a cousin on my mother's side that has Chron's. I have had digestive problems all my life. My daughter and I both have problems with GERD. I also read that depression has been linked to CD, our family has problems with that also. My daughter has 4 specialists and a family doctor and all of the specialists have her on medications, I would really like to find the cause of everything and get her off of some of the meds. Do you think I need to clean out the kitchen and use all new cookware and cutting boards, etc. as I've seen mentioned? That seems extreme, but if that is maybe what is causing my daughter to not have complete recovery, then I'll do whatever it takes. Any suggestions or insight would be greatly appreciated!
