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JudyLV

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  1. I have posted a few times regarding my 13 year old son. He has been gluten free for 5+ years and dairy, egg, soy, legume, and nut free for a couple of years. In the last year he had anxiety, OCD and vocal tics develop. I was puzzeled because the diet changes seem to help others and his symptoms developed while on a strict allergen free diet. Last week we got some test results back and he tested positive for pyroluria and Lyme Disease. He had Lyme in 2002 and that is when his gluten intolerance started. It is possible that the Lyme has been hiding out and building up and now that it ha
  2. We did the IgG delayed food allergy testing (using http://www.optimumhealthresource.com/ )when my son developed a lot of GI problems despite having been on a gluten free diet for 3 years. He had elevated eosinophils in his blood and colon. Removing the foods he showed high reactions to helped with his nausea and explosive diarrhea. Unfortunately his vocal tics developed after he had been on a restrictive diet for almost one year. They seem almost gone at the moment (except for a deep "purring type" sound while he is relaxed and watching TV). He still has anxiety and OCD issues though.
  3. I looked into it but my son can not have dairy, eggs, or nuts (in addition to gluten) so it would not work for us. Kim over on http://www.glutenfreeandbeyond.org/forum/index.php has posted about it. I think she used it as a basis for her family's elimination and rotation diet. I am sure she could answer any questions that you have. --Judy
  4. Anne, This link provides a lot of information on testing for Celiac Disease and gluten sensitivity http://jccglutenfree.googlepages.com/diagnostictesting I copied the explaination below from it A complete celiac panel includes the following tests: antigliadin IgA and IgG (indicates gluten sensitivity) anti-tTG and/or anti-endomysial total serum IgA (rules out IgA deficiency) anti-reticulin IgA To save cost, this panel is often reduced to a single test...usually the anti-tTG. Many "experts" consider the gliadin and reticulin antibody tests as optional and outdated. It i
  5. I am thinking of having my son tested for gluten intolerance. He just had a physical and the doctor did a blood test for Celiac Sprue which turned out normal. Anne, Do you know if they tested your son's total IGA? If someone is IGA deficient their Celiac screening can show a false negative. The Enterolab tests are also IGA based so you should ask about this (get copies of the results) before ordering the Enterolab tests. --Judy
  6. Hi Nick's Mom, I remember you said your son is reluctant to giving the gluten free diet a try. On the site www.enzymestuff.com it is reported that some people can "get away" with eating some gluten if they take digestive enzymes. One word of caution they report is that if someone with Celiac Disease eats gluten and takes enzymes they may actually get worse http://www.enzymestuff.com/conditionceliac.htm We have found probiotics to be essential along with digestive enzymes. You would want to take the probiotics away from antibiotics though. When starting supplements it is best t
  7. bmom, In order to get a "gold standard" diagnosis of Celiac Disease you need to have an intestinal biopsy that shows villi damage. Here is more information on the testing http://jccglutenfree.googlepages.com/diagnostictesting Your pediatrician could order the initial blood tests and if they were positive you would need to follow up with a GI doctor. --Judy
  8. bmom, you asked Could I avoid going gluten free by adding enzymes? This is addressed here http://www.enzymestuff.com/conditionceliac.htm Karen DeFelice also writes about this in her books. She reports that some people can get away with continuing to eat gluten by adding enzymes to their diet. However, if someone has Celiac Disease they can acutually get worse if they eat gluten and use enzymes. The enzymes break down the gluten and the result is exposure to a larger quantity. So I guess you could try and see or actually get tested for Celiac Disease or gluten sensitivity before tr
  9. Has anyone else with tics and OCD had Lyme Disease? I was glad to read the new Latitudes article "Lyme Disease in Tourette Syndrome and Autism". My son had Lyme Disease 5 years ago and although we thought he had been completely treated, with Lyme there is always a chance that it is hiding out only to resurface later. We are currently going through some more tests for Lyme and other co-infections. Lyme could be the basis for his many food intolerances and more recently developed anxiety, OCD and vocal tics. I am sure it will be years before this is recognized by mainstream doctors but
  10. we first tried a GF diet when he was about 4, did it for a short time but i didnt see the miraculous transformation everyone talks about so i stopped because he would rage for his sugar and breads. It can take a month or more to really learn the basics the gluten free diet. When you tried the diet were you using shared condiments such as jelly and butter that might have had crumbs in them? Did you have a dedicated gluten free toaster or toaster oven? Many items that seem to read to be ok based on ingredients might contain gluten. I initially made that mistake with a rice cereal that h
  11. He is enraged daily, he is depressed daily. He has wierd patches of irritated skin and dark circles and complains of his tummy every hour (he does have an unexplained duodenal ulcer) - i have removed the artificial colors and preservatives and still these extreme behaviors persist. I assume your son had an endoscopy if he has a duodenal ulcer. Did they do blood tests and take biopsies to check for Celiac Disease? My son has stomach aches, nausea and explosive uncontrolled emotional behavior when he eats gluten. He has been on a gluten free diet for years, but does not have a firm Celiac
  12. My son is gluten intolerant. He becomes emotionally unstable when he consumes even trace amounts of gluten. He is 12 years old. Our GI doctor wanted him to do a gluten challenge a couple of years ago. While he was eating gluten many days were filled with tears, yelling, and uncontrollable anger. We had to stop the challenge because he broke his arm but it was a very stressful time. Once he was off of gluten for a week or so I had my happy, agreable son back. --Judy
  13. Caryn, If you go to The Gluten File http://jccglutenfree.googlepages.com/ and scroll down on the left you will find an entire section on neurological manifestations. My son has been on a very strict gluten free diet for almost 5 years now and he has been dairy, soy, egg, nut, legume and citrus free for almost 1.5 years. His vocal tics had been sporadic until last spring when they increased in intensity (and some OCD behaviors and anxiety started). I am also looking into other dietary triggers but have not determined what they are for my son. I know he becomes very angry and emotionall
  14. My 12 year old son has a lot of delayed food allergies. These were determined through IgG testing. An allergist would most likely test for allergies which cause an immediate reaction and are IGE allergies. Here is a link to a table that explains the difference well http://www.optimumhealthresource.com/validation/delimm.html My son was initially very nauseous following treatment for Lyme Disease. We learned he was gluten intolerant. He became quite healthy after removing gluten from his diet. Then 3 years later he started with a lot of GI symptoms again. We did delayed food allergy t
  15. Faith, The bedtime routine involved lots of checking doors, thermostat setting, and getting things set just so in my son's room. Then he had a series of questions he had to ask my husband, and then, me 3 times each. He then insisted that everyone in the house should be quiet. This was imposing on the rest of us--especially his older siblings. It was suggested that he get a sound machine alarm clock and then if noises are bothering him he can turn that on to block out other sounds. Unfortunately he does not like this too much but it is a tool he can use to control his environment.
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