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

I introduced my 12 year old son last month. We have gotten some interesting test results since then. His strep titres were negative. He had hurt his foot and had sore joints so we saw an orthepedic doctor. He has a stress fracture in his heel along with bone marrow edema and his Lyme screening test is positive. We have had some more testing for Lyme and coinfections and are awaiting results. For now we know the antibodies that indicate you had Lyme (IgG) are positive and there is controversy as to if you should treat until those are negative. They apparently can stay positive for months or maybe years but he had Lyme in 2002. I am wondering if my son's anxiety, vocal tics, and OCD could be related to Lyme. Observations I have made with regard to vocal tics are the 2 times he has been sick recently he stopped the vocal tics. The first time he had a sore throat and cold and stopped the tics for about a week. I asked him about it at one point and he said he just had not "felt the urge" to make the sounds. Unfortunately they did come back. My son has an increase in vocal tics when he comes home from school. If he goes to the basement to play video games after school they are worse than if he comes home and reads. If we know they will be worse during the time he plays video games after school is there a reason for him not to do that? It is a controlled environment and it is a release (my feeling is that he holds the tics in during school and they have to come out). Or is there some information indicating if all situations that trigger tics are avoided that they will decrease. I should probably know the answer to this after all of the reading I have done but I really went off on a tangent researching Lyme Disease again and my brain is saturated with information. I should also mention that I found a therapist to work with and she has given me some good suggestions on cutting down on the bedtime OCD routine and anxieties. If I need to go back to her after we sort out the Lyme stuff I certainly will. Thanks for any input. --Judy

My son learned to take pills when he was 7. We would put tiny candies in applesauce and gradually increased the size of "the pill". Once he had that down he learned to swallow them with water. The other option was to put the contents of a capsule or crushed pill in the middle of a spoon of applesauce. --Judy

Amy, Is your daughter aware of the vocal tics? My son is 12 and I have asked him a few times if he was aware that he was making his sounds. He almost always says "no". Right now I am in the observation stage but am wondering if I should comment to make him aware. One time, over one year ago when he had a flareup with vocal tics I asked him to try to stop. He said he just has to do it until "it feels right". I am new to this and just wondering what the best approach is. I feel they can not work on decreasing them if they are not even aware they are making sounds. --Judy

Thanks C.P. By passing the puberty stage do you mean the "just entering puberty stage"? I read in another post your son is 14 and things have settled down. So hopefully this will not last throughout puberty. Thanks for pointing me to the MSG thread. Since my son can not have eggs, some of the baked goods I make have unflavored gelatin in them. It never would have occurred to me that I was adding MSG to his diet. Thanks Amy. Do you know what type of blood tests your neuro is doing? I am also interested in if there is a possible nutritional deficiency. My son's tics seemed worse in the spring and I am wondering if the seasonal allergies put him over some threshold. He was fine at the beach on vacation this summer and when we returned home it all started again. Someone mentioned that the ragweed was very bothersome this fall so maybe that also had something to do with all of this. We will keep searching because there is a way to help our kids. We just have to find it. --Judy

Hi, I have posted an introduction under "New here". My 12 year old son is having problems with anxiety, obsessive complusive behavior and tics (mostly vocal). I have started to make calls to locate a therapist to help us. One question I have gotten is "who is his neurologist?" It really did not occur to me to take him to one. Would it be beneficial to take him to a neurologist? I have a feeling that would just make him more anxious. I do not want to medicate him. Is a neurologist the only one who can make a TS diagnosis? Is a diagnosis needed? If my son were disruptive in school I can see where a diagnosis would be helpful in getting teachers to understand. If one gets a Tourettes diagnosis can it ever be taken away-or will it be a pre-exisiting condition that will follow my son around forever? As you can see I have lots of questions. You also might get the feeling that I am skeptical of doctors. I recieved an MS diagnosis 9 years ago and have found alternative therapy and diet (specificially a gluten, dairy, soy, egg, legume free diet) to be a key to my healing. However, my neurologist will not consider taking away my diagnosis. Thanks for any advice. --Judy

Hi, I am new here and searching for information to help my son. I have lots of questions and will probably start some new posts but I wanted to give a little background information. My 12 year old son has always had some "quirky" behavior but it has recently become disruptive for the family. My son had lots of sinus infections when he was very young which required lots of antibiotics and removal of his tonsils and adnoids before he was 2. When he was in 2nd grade he had Lyme disease and was treated with antibiotics. After the initial treatment he had unrelenting nausea and we learned gluten was a trigger for this. He has been gluten free for over 4 years. Over one year ago he developed GI symptoms again and we learned he had increased eosinophils in his blood and colon. We started to work with a nutritionist and learned he had delayed food allergies to dairy, soy, eggs, legumes, nuts (he is also RAST 5 to peanuts), citrus and a few other foods. Once we removed these foods (in addition to gluten) his GI symtoms cleared up. He takes a good multivitamin, probiotics and digestive enzymes. He eats a good diet compared to most kids. It is mostly a whole foods diet with very few processed foods. He got dental braces last May. Over the years he has had some anxiety, obsessive compulsive behaviors and tics. I did not know that some of these things, such as sniffing and blowing on his fingers, were tics until I started to read about them. At night he has always had a series of questions he has to say to either me or my husband before going to bed. This summer this "routine" increased to multiple checking of the doors and temperature and repeating the questions 3 times to each of us, I have to go last. Then some things in his room need to be checked and just right and everyone in the house has to be quiet. He is afraid he will not be able to sleep. So now I must be home at bedtime or he starts to panic. He also does not want his 16 year old sister to have any friends over after 9 pm because they might keep him awake. He has had vocal tics off and on for over the past year and 1/2. They were pretty bad in the spring but they went away over the summer. As soon as we came home from vacation, 2 weeks before school started, they came back. They are quite bad when he comes home from school. He makes a variety of sounds including deep "whoo" when he is excited, a squeaking sound, a nasal clearing and almost a deep purring. I am not sure he is even aware that he is making them so often but has told me he has to make the sound until it "feels right". I have to assume that he does not make them at school because I think someone would have contacted me. I will be going through the Tic trigger checklist over the next couple of weeks. I already think the computer/TV is a trigger. I mentioned to him that we wanted to take him to a therapist who could help with some of his problems since they were disruptive to our family and he became very anxious and refused to go. I am starting with some books instead while doing a search for a therapist. I have convinced our pediatrician to run the strep titers so we will know where we stand with regard to PANDAS. Thanks for making all of the information on this site available. It looks like a very good resource. --Judy

Dr. Chansky, I just wanted to thank you for these books. I have been going through them to help my 12 year old son and I have learned more about how he is feeling. We are very new to this, although he has had some "quirky" behaviors for years. From my observations he has recently crossed the line to a child who needs some professional help. He has anxiety, obsessive compulsive behaviors and tics (mostly vocal). He has made it clear that he does not want to talk to a therapist about this so I am starting with your books. He seems very relieved to read that someone understands what is going on in his head and that there are ways to help. Hopefully as he understands this more and begins to get some relief from his anxiety he will be open to seeing a therapist. Thank you! --Judy