Should My Daughter Get More Testing?

[hpymomof3]

My daughter was tested through Enterolab and got a low positive result of 11. A previous saliva test was negative. She has never had any intestinal symptoms. She has had severe insomnia for two years and the doctor that we are currently seeing thought it could be related to gluten intolerance. She has been gluten free since October and has seen no improvement. At first this doctor thought that she had some neurological symptoms but we went to a neurologist who did a very thorough examination and she said that my daughter was fine. The only other symptoms my daughter had was swelling in her knees and a slightly positive ANA test. We went to a rheumatologist for further testing and everything came back negative. He felt that the ANA was a false positive. It also turns out that her knee pain and swelling is patelofemoral syndrome and is structural rather than rheumatologic in nature.

I'm now debating whether or not I should keep her gluten free since she has had no improvement and is miserable on the diet and also what testing if any I should have done for her.

[mushroom]

At this point your options for further testing are limited. Did the Enterolab testing include the genetic testing to see if she has a genetic predisposition to celiac disease/gluten intolerance? While this won't give you a diagnosis it could help knowing whether or not she has one of the predisposing genes. Your doctor can also order a serum genetic test. All other celiac testing would mean having her back on gluten for three months to allow time for the antibodies to build up and for possible damage to the small intestine diagnosable by biopsy. Since you are considering reintroducing gluten to her diet anyway, perhaps this is the way to go. Just a word of caution: there are frequent false negatives on both of these tests, and if she does have an intolerance it could be non-celiac gluten intolerance which would not show up on the testing anyway. It is all so confusing, isn't it?

As for her neurological symptoms, most neurologists will not find anything on neurological examination, if the patient is celiac. Many posters here have spent years trying to get neurological symptoms diagnosed, and about the only way this seems to happen is when an MRI of the brain shows Unidentified Bright Objects (UBO's). Ravenwoodglass is one of the posters who had severe neurological symptoms and no diagnosis for many years.

Doctors seem to often dismiss positive tests as an anomaly, like your daughter's ANA test. You could follow up further with this test. There are subsets of this test that can be run to define what autoimmune condition exists (the doctor would say, if any), and you can find information about these here: Open Original Shared Link Whether or not you could convince a doctor to run them is another story.

With that, I am afraid I am out of ideas. Someone else might have further help.

[momxyz]

hi,I have some questions....

what were the neurological sypmtoms the doctor thought he was seeing? Was/is there anything else going on with your daughter besides the insomnia? And how old is your daughter?

[hpymomof3]

hi,I have some questions....

what were the neurological sypmtoms the doctor thought he was seeing? Was/is there anything else going on with your daughter besides the insomnia? And how old is your daughter?

She will be 15 next month. She has had severe insomnia for 2 years. We have gone to several specialists and no one can figure out the cause. Our current doctor is wonderful but so far my daughter hasn't had an improvement on the gluten free diet. She seems to tire easy, has trouble concentrating and is sometimes sensitive to light. She also sometimes has trouble tracking her eyes. The doctor felt that these were neurologic symptoms related to the gluten. On the other hand, it could be due to the fact that she is so tired. She is very sleep deprived. Other than that her only other symptom was that out of the blue her knees started to swell and were painful. We thought that perhaps it was an autoimmune reaction and that is why we went to the rheumatologist. Her initial ANA test came back slightly positive but further testing was all negative. The rheumatologist said that it was a structural problem with her knee not an immune reaction.

[mommida]

Have you made sure she has no nutritional defiencies? i.e. vitamin B 12 defiency can cause nuerologic problems.

I would suggest she have some further tests with a sleep study. My nephew was just diagnosed with 2 sleep disorders. He has suffered for the last 5 years until he was just diagnosed weeks ago.

Just my thoughts....

[hpymomof3]

Have you made sure she has no nutritional defiencies? i.e. vitamin B 12 defiency can cause nuerologic problems.

I would suggest she have some further tests with a sleep study. My nephew was just diagnosed with 2 sleep disorders. He has suffered for the last 5 years until he was just diagnosed weeks ago.

Just my thoughts....

Yes, she already had a sleep study done last May but we are actually going to another sleep specialist tomorrow. This will be about the 10th specialist or doctor that we have seen in the past year. She is on numerous supplements: B12, Vitamin D and several other things. I'm actually hoping that they do another sleep study.

I'm just really starting to doubt that she is gluten intolerant since her test result was so borderline and she has had no improvement 5 months.

[mommida]

My test results were all negative. That doesn't change the fact that 15 minutes after I eat some it makes me sick, sick, sick!

Have you ruled out any other food intloerance?

[hpymomof3]

My test results were all negative. That doesn't change the fact that 15 minutes after I eat some it makes me sick, sick, sick!

Have you ruled out any other food intloerance?

She was tested for milk allergy and that was negative. The thing is that she has absolutely no reaction to any food. She feels fine eating foods with gluten in it.