Celiac? Should I Ask For Further Testing?

[Ivory]

My daughter is 8 years old. She was started seeing the pediatrician about 1 1/2 years ago for heart palpitations and pain in her chest. Her heart was checked and seems fine. They ran blood work and discovered that she had low blood platelets and anemia. She also had a high ige rate. Ten times higher than normal. After about 6 months everything has rebounded. She has been diagnosed with ITP since her platelets are still on the low side but not causing problems right now and based on the fact that her dad also has this. She also complains daily of feeling sick. She says her stomach burns or is gassy. She has bouts of diahhrrhea but then has times when she is normal. She has chest pain and angina like symptoms. I mentioned to the doctor that she is very moody and irritable. She is unable to concentrate. This seems to coincide with the timing of everyyting else. He suggested testing her for ADHD. The past few months she has mentioned that her vision is blurry. She also has some white or gray hairs. She also has had a couple of anxiety attacks that have landed us in the hospital. I don't know if this is all related or not. She had a blood test for celiac about a year ago but it was negative. Should I still ask the doctor for further testing and if so what??? She is so pale and drawn out looking all the time and is not feeling well ALOT of the time. I'm not sure where to go with it and I think the doctor may believe I'm off my rocker it I ask him about celiac but I truly believe it is somehow food related. I have an appointment with him tomorrow andy help would be appreciated.

[mushroom]

If she were my child I would definitely want more testing done, and I also think another celiac test is appropriate before you start getting into ADHD-type thinking because so many children who are suspected/diagnosed with this have problems with gluten. Now, I'm certainly not sure that that is the problem but I think it is the proper place to start. If the testing is still negative, I would do a gluten free trial with her and see if it helps her. You do not need a doctor's permission to do this. She could also be reacting to dairy along with the gluten. If removing these from her diet does not help then you are farther along the diagnostic trail.

[Pac]

If you think it's food related, then you definitely should test her again. Test not only for celiac - for some reason they often don't include anti-gliadin antibodies in the celiac panel, test for all major food alergens in all three classes - IgA, IgG, IgE.

Other option is testing with elimination diet. Exclude all the suspected culprits from her diet for at least a month. If she gets better, then start adding the excluded foods one at a time. Always wait a few weeks before adding a new one.

Food diary is another thing you can try, maybe before the elimination diet - keep track of everything she eats and drinks, sometimes it takes a few hours or even days before any symptom shows after eating the trouble-making food. What happened to me is that I usually got sick after dinner, so nobody ever suspected the bread I was eating for breakfast... And I had very similar symptoms to your daughter.

[OBXMom]

Have you seen a GI doc? If your child is having daily tummy aches and angina type pains, I would definitely see a specialist. I am sorry your daughter is having so much trouble. I remember constantly googling lists of my son's symptoms trying to figure out his many issues before he was diagnosed with celiac. Ironically, celiac disease came up a number of times, but I discounted it because my son had been tested for that before. I would say trust your instincts and find a doctor committed to helping your daughter feel better.

[Ivory]

Have you seen a GI doc? If your child is having daily tummy aches and angina type pains, I would definitely see a specialist. I am sorry your daughter is having so much trouble. I remember constantly googling lists of my son's symptoms trying to figure out his many issues before he was diagnosed with celiac. Ironically, celiac disease came up a number of times, but I discounted it because my son had been tested for that before. I would say trust your instincts and find a doctor committed to helping your daughter feel better.

[Ivory]

Thank you for your input. I took her to the doctor today and patiently sat through the how much fibre is she getting talk. I was very specific about her symptoms and the first thing he did was look up wether or not he had tested her for celiac. I talked to him about it and he said that just because the last test was negative does not mean that she may not have it.Afterwards, I told him I had tried a mostly gluten free diet for a bit and the reaction we had. He found this very interesting He has ordered an ultrasound to check her appendix and gallbladder since there have been problems with both in the family. If that is negative he will order another Ttg test. He was even responsive to a specialist if it all comes back negative. It may take a month or so to get in for the ultrasound so he will see her after it is done. He said to try taking MSG and nitrates out of her diet and reducing her wheat but not eliminatiing while I wait for the ultrasound. Hope we are on the right track.

[Ivory]

Thank you for your input. I took her to the doctor today and patiently sat through the how much fibre is she getting talk. I was very specific about her symptoms and the first thing he did was look up wether or not he had tested her for celiac. I talked to him about it and he said that just because the last test was negative does not mean that she may not have it.Afterwards, I told him I had tried a mostly gluten free diet for a bit and the reaction we had. He found this very interesting He has ordered an ultrasound to check her appendix and gallbladder since there have been problems with both in the family. If that is negative he will order another Ttg test. He was even responsive to a specialist if it all comes back negative. It may take a month or so to get in for the ultrasound so he will see her after it is done. He said to try taking MSG and nitrates out of her diet and reducing her wheat but not eliminatiing while I wait for the ultrasound. Hope we are on the right track.

[Ivory]

Thank you for your input. I took her to the doctor today and patiently sat through the how much fibre is she getting talk. I was very specific about her symptoms and the first thing he did was look up wether or not he had tested her for celiac. I talked to him about it and he said that just because the last test was negative does not mean that she may not have it.Afterwards, I told him I had tried a mostly gluten free diet for a bit and the reaction we had. He found this very interesting He has ordered an ultrasound to check her appendix and gallbladder since there have been problems with both in the family. If that is negative he will order another Ttg test. He was even responsive to a specialist if it all comes back negative. It may take a month or so to get in for the ultrasound so he will see her after it is done. He said to try taking MSG and nitrates out of her diet and reducing her wheat but not eliminatiing while I wait for the ultrasound. Hope we are on the right track.