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.

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.

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.

My daughter tested positive with an 11 through Enterolab but she has not had any improvement in the 4 months that she has been off of gluten. Her only symptom has been severe insomnia. She has never had GI symptoms I'm really starting to question whether or not she is truly sensitive to gluten. Is there another way that we can find out?

I wonder why so many people who can't have gluten have insomnia. My daughter has had severe debilitating insomnia for about 20 months. We have gone to so many specialists and no one has been able to help her. She went gluten free in October after finding out that she tested positive through Enterolab. We still haven't seen any improvement. She is on several supplements (B12, B6, zinc, b complex to name a few) and nothing is helping her.

It is so bad that I had to pull her out of school last fall and have been teaching her at home. It is even difficult for her to learn at home. She can never fall asleep before 3:00 and often not until 4 or 5. Then she wakes up pretty much every hour and can't get back to sleep. I let her stay in bed until 10:00 but she still isn't getting very much sleep. It is so difficult for her to get through the day.

Any more suggestions?