Test Results

[wsieving]

Ok, so Children's Mercy called me and would only tell me that all of her levels were "normal". I asked if they could mail me a copy of the results and they said that those were for THEIR records.... I really do not understand this, I'm not sure why they couldn't give me the actual results. I called and made an appt with her local pediatrician for tomorrow morning requesting allergy testing since my pinhead GI did not do it. This is so frickin frustrating because we are no closer now to knowing what the problem is than we were a month ago. I just want to scream. Her GI said the results would be accurate because if Celiac was what was causing her to be so thin that there would definitely be conclusive results on her tests. I just want to cry. I mean, I don't want my daughter to have celiac disease, but at the same time I was looking forward to an answer and to be able to do something for my daughter to get her healthy again, KWIM?

[Phyllis28]

I suggest you check the hopsital website and see if there are directions for requesting medical records. Also, you may have been talking to the wrong person. When I needed hospital medical records sent off to support my time off for work when I had surgery I had to talk to the medical records department in the hospital.

The other alternative is to have you local peditrician or GI provide you with copies of the test results.

Were these test results from a blood test or a biopsy?

[wsieving]

They were from a blood test. I think you are right, best way to go about it would probably be through my pediatrician.

[ShayFL]

You have a legal right to copies of your daughter's medical records. Talk to the right person and dont take no for an answer.

Her GI said the results would be accurate because if Celiac was what was causing her to be so thin that there would definitely be conclusive results on her tests.

This is just wrong. I suffered for nearly 12 years from so many doctors that were flat out WRONG.

No matter what they tell you. No matter what the test say. You do not need permission to try a gluten-free diet on your daughter. If she responds to the diet by getting healthy and gaining weight. You will have your answer.

For me, if it were my daughter, I would care more about getting her well and less about an official diagnosis. Exhaust all of the tests you can and then try the diet.

[wsieving]

Shay, you are right. However, my husband was allergic to everything under the sun when he was a child, so we want to first make sure she has no other allergies, and then have discussed going gluten free with or without a diagnosis. We just want to make sure we are not neglecting to avoid any other foods that may be causing her issues. She definitely has a dietary response to gluten. The past couple of weeks she has been trying her hardest to avoid, while we were pushing gluten prior to testing. In turn, her responses seem weaker, no diarrhea for a couple of weeks now. But she is still bloating at night, along with the ever present swollen lymph nodes in her groin, dark circles, etc. Just no leaky gut lately. So weird... Anyway, we have our mind set on trying the diet once allergy testing comes back-- really nothing else we can do after that anyway, and we want to see our DD healthy again.

[kbalman]

Just curious how old is your daughter? We just went thru the same issues with my 15 month old son. I saw 2 pediatricians, two GIs a dietician. Still no concreate answers. We started gluten free 2 wks ago already showing signs of improvement. However I am struggling with the whole gluten free thing when it comes to shopping, particulary the cross contamination thing.

I feel your pain. My son went through the biopsies, bloodwork twice one was for allergies, stool tests. He has been very sick and not gaining weight since he was 6 months old. It is really annoying only us mothers are concerned.

They also put my son on pediasure which really helped him start packing on the pounds he is finally growing into his 9-12 month clothes. About a month ago he was only where size 6 months.

[kbalman]

Ohh and also those blood results are yours. You or your insurance paid for them and you have right to get them. Sometimes you need to talk to medical records and sign a release form. I have all my sons records whether or not they were negative that way I can keep track of what he had done. I know with his panel they told me one thing but when I got them in my hands and did some research I realized that several of his number were actually boarderline and that the GI should have not ruled out the celiac disease. He showed weak positive on two celiac blood tests. I also realized after contact quest diagnosicts that there was some celiac blood tests they didnt do one called the comprehensive panel. He hasnt gotten that one done yet because i opted to try the diet rather than have them take more blood that may not be accurate due to his age.