JudyLV

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 has resurfaced it has caused some of his other symptoms (he also has bone and joint pain). I am thankful for this forum (recently there was an article on Lyme causeing TS symptoms). If we had followed our pediatrician's advice my son might simply be medicated to keep his symptoms under control. Now we are getting to the root cause of his symptoms. --Judy

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. I don't know if he may be reacting to other foods now. He has not had success adding back in any of the foods he has had reactions to. In his case there were so many foods he reacted to (gluten, dairy, egg, soy, legumes, nuts, citrus, pineapple) that keeping a food diary did not help. However, after getting the test results and looking back at the food diary we were able to see the cause and effect. The lab we used had quite a long turn around time. I do not know if they have corrected this. There are a lot of labs out there that do delayed food allergy testing. ---Judy

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

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 is said that antigliadin antibodies are not specific to Celiac Disease, but they are often the first to show and are of increased significance for those who may have gluten sensitivity manifesting as neurological disease. The least expensive route to go would be to have you doctor run all of the above listed tests (if your insurance will pay). If he will not you could self order through Enterolab but you still do not know if your child is IgA deficient. My kids (who at this point have "presumed" Celiac) all have very low total IgA and the only blood tests to come out positive were the antigliadin IgG. I am not sure if they would have tested positive through Enterolab because of this. Also keep in mind if you have your doctor run the gene tests for Celiac they only test for HLA DQ2 and HLA DQ8. Gluten sensitivity can also be associated with HLA DQ1 and I think that Enterolab is the only lab that routinely tests for this. More on Gluten Sensitivity as a Neurological Illness can be found on the link I listed above. --Judy

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

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 to only add one at a time and wait a few days before adding another. That way if there is a negative reaction you have a better idea what caused it. --Judy

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

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 trying enzymes. In any case if you are going to be tested you need to continue to eat gluten until the tests are completed. --Judy

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 I am comforted that at least a connection is starting to be made between Lyme and psychiatric illnesses. --Judy

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 had malt (barley) in it. Anyway, crumbs can make a difference. Is there a support group (either Celiac or Gluten Intolerance Group) in your area where you could get some tips on shopping in your area? Here is a great website for some basic information and to ask questions about the diet or your son's symptoms http://www.glutenfreeandbeyond.org/ The summer we did a gluten challenge on my son was extremely stressful because of his emotional instability and anger. It sounds similar to what your son is going through. He must feel awful. I am really sorry you are going through this. --Judy

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 diagnosis. We know he has had trace amounts of gluten from cross contamination when his behavior takes a nose dive. He also states he hates himself during these times. If your son's GI doctor did take biopsies you could always get a second opinion on them or you could just give a gluten free diet a try. Unfortunately damage from Celiac can be patchy and it is sometimes difficult to get a "gold star" diagnosis. If your son's behavior goes downhill through out the day take note of what he is eating and how his behavior is. Sometimes there is a delay in a gluten reaction so it may be difficult to figure out. Have his "weird patches of irritated skin" been checked out by a dermatologist? Dermatitis herpetiformis is a skin manifestation of Celiac Disease. Here is a link describing it and showing pictures so you can evaluate if this is a possibility. http://www.csaceliacs.org/dh_symptoms.php Dark circles under the eyes can also be indicative of food allergies. You might want to consider delayed food allergy testing (IgG based). Keep researching so you can be armed with information before your appointment. --Judy

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

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 emotionally unstable if he has a very small amount of gluten so there is a chance his tics would also increase with more gluten. However we are not going to test that. He has not been diagnosed with celiac but is definitely gluten intolerant. You might want to check out http://www.glutenfreeandbeyond.org/forum/ They have a subforum on neurological manifestations and a lot of research oriented people hang out there. Also many of the regular posters have food intolerances in addition to gluten so you might get some information about corn and other foods (dairy in particular). --Judy

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 testing (there are a lot of labs where you can self order this test) and learned he had allergies to dairy, soy, eggs, legumes, citrus, and nuts. After removing these foods from his diet he did well for another year. Then the vocal tics and anxiety started. --Judy

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. We are working on cutting back the questions. It was suggested that he should ask them once and then write them down if he needs to. All of this is substituting one thing for another but the point is to remove my involvement (which he had become dependent on). He seems a bit more relaxed at bedtime. Initially he feared that "something bad would happen" if he did not repeat everything 3 times. He is cutting back and seeing that nothing bad is happening so I think we are making progress. One thing that has helped is getting the books What to do when your brain gets stuck and What to do when you worry too much. Both are by Dawn Huebner. My son was greatly relieved to read that other people have the same types of thoughts/obsessions that he has. I am glad we have taken some steps to cut back on the bed time routine because it was getting out of hand. --Judy