Jump to content
Celiac Disease FAQ | This site uses cookies GDPR notice. Read more... ×
  • Sign Up


Advanced Members
  • Content Count

  • Joined

  • Last visited

Community Reputation

0 Neutral

About hpymomof3

  • Rank
  1. My 15 year old daughter went on a gluten free diet about 5 months ago. She had never had any intestinal issues. Her ONLY symptom was insomnia. The insomnia hadn't improved at all after being gluten free for 5 months. This past week we went to two different doctors (sleep specialist and gastroenterologist) Both of them strongly feel that my daughter is not gluten intolerant. She tested negative on a saliva test but borderline positive on the Enterolab test. She scored an 11. They also feel that she should have had some improvement by now since we had been very strict with her gluten free diet. So we decided to have her start eating gluten again. Friday afternoon I gave her a few goldfish crackers. She had no reaction. Friday afternoon she had a few more crackers. For dinner she had a gluten-free dinner but I also gave her one breaded cheese stick. She still had no reaction. Saturday morning she had a waffle with no reaction. For lunch she had a cheeseburger (with bun) and no reaction. Last night for dinner she had pizza filled poppers, which were breaded. She didn't have a reaction to any of these foods but around 2 am last night she had diarrhea. Now I am wondering if it is a reaction or it is just coincidence. I kind of feel that she would have had some kind of reaction on Friday if it was the gluten. Is it possible that anyone would have a reaction (gluten intolerant or not) after being off of gluten and then going back on it? I'm also wondering if it is possible that she just had a bad reaction to that kind of food. I know once in a while a particular food just doesn't agree with you but that you are fine the next time you eat it. Other than the diarrhea she seems fine and doesn't really have cramps, no brain fog, etc. Any suggestions?
  2. 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.
  3. 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.
  4. 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.
  5. 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.
  6. 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?
  7. My daughter was diagnosed with gluten intolerance a few months ago. She has had severe insomnia for a year and a half. The doctor thought that there was a good possibility that she was gluten intolerant. We did testing through Enterolab and she came back positive but her score was only an 11. Prior blood tests came back negative. The gene workup also showed that she has genes for gluten intolerance and for Celiac disease. Other than the insomnia she has no other symptoms. Her stomach is fine and she has never had trouble eating certain foods. She has been gluten free for 4 months and she hasn't had any improvement. We have seen a few other specialists to try to help her with the insomnia. Everyone we have talked to says that you need the biopsy to confirm gluten intolerance. On the other hand, one of our doctors feels that the stool test is more accurate. My daughter is miserable being on a gluten-free diet. She also seems a bit malnourished now that she has been gluten free since she is a picky eater and it is difficult to find foods that she likes to eat that are gluten-free. She was never malnourished before but now that she is gluten-free the tests show that she is. Is it true that she needs to be back on gluten for the biopsy test to be accurate? I hate to put her back on gluten if it will set her back more but it has been 4 months and we haven't had any improvement anyway. On the other hand, it seems senseless for her to be off gluten if it isn't helping.
  8. 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?
  9. My daughter has had severe chronic insomnia for the past year and a half. We found out that she is gluten intolerant (through Enterolab) in October and she has been gluten-free ever since. Her insomnia is still severe and nothing seems to help. How long until the insomnia should get better?
  10. Now people (doctors and others) are questioning whether or not the stool test is sufficient proof.
  11. My 14 year old was recently diagnosed as gluten intolerant by Enterolab. I'm a bit confused because her blood test came up negative. She has been several different doctors due to health problems and some say that she isn't gluten intolerant unless the blood test is positive. Several people have told me that if you don't have Celiac then you aren't gluten intolerant. My understanding is that Celiac is just when the intolerance has caused damage to your intestines. My daughter's results showed antigliadin IgA antibody was elevated. She does not have high enough intestinal IgA antibodies to show an autoimmune reaction, which is strange because she has autoimmune symptoms. She also had a positive genetic test which shows that she has the gene predisposing her to both Celiac and gluten insensitivity. I truly believe that my daughter is sensitive to gluten but I'm trying to figure out an explanation to tell other people how she can be gluten insensitive but not Celiac.