Gluten Free and Tics

[ilovedogs]

Just wanted to chime in about the onset of tics that's being discussed here. My son started tics the day he turned 9. It was like someone just flicked a switch. He's going to be 15 in the fall.

 

Unrelated to the gluten issue, I just want to encourage the parents here to educate their children. As my son got older we talked about his tics and his ADD and anxiety issues. I've gotten him help when he wanted it and backed off when I needed to. But, the best thing for him was for him to know other kids with tics and for him to be able to explain it to his friends. A new friend of his at tennis wanted to know about his eye rolling and thought my son was doing it on purpose and said it was weird. My son explained it was a tic, along with a few others that he has going, and told the boy about how it's almost like blinking your eyes where you do it but you don't have to think about it and you might even be able to stop it for a short period of time. His friend was grateful for the explanation and apologized for what he said.

 

We have also been lucky enough to homeschool but my son does attend classes at a co-op two days a week and he's made sure his teachers and classmates know what his deal is. They're all very supportive and his tennis friends leave him alone because he's ranked 5th in our section in the nation and top 200 in the country and I guess he gets some respect from most of the tennis kids here. He has lots of friends in tennis all over the country, some of whom also have TS. I watched him have a conversation with his friend from Washington, DC about their tics and how it affects their tennis. They bro hugged each other afterwards.

 

Anyway, that's my lecture of the day, LOL! Just want to encourage everyone. You all are wonderful parents for looking after your children's needs, spending the time and money researching, and then taking the efforts to do dietary changes, etc. I think parents of kids with any issues like TS, ADHD, OCD, learning disabilities, etc are super parents!

[msimon3]

It won't help for everyone, It helped for my son but thats most likely due to the fact that he had gut issues and people with Pyrolle do better on gluten/dairy/additive free diets.... it's all trial and error i guess. msimon3 did i just read your child ended up having Lymes disease? Which most likely meant no matter how clean the diet was it wouldn't have helped? I def think it's important to rule out any underlying conditions too

 

Yes, in our case the rapid onset of tics suggested that something other than food sensitivities were the cause. Based on some collateral IBS symptoms and the guidance of well meaning doctors we did embark on testing for allergies and eliminating diary/gluten/corn as potential causes. We thought we saw patterns between some foods and tic frequency/severity, but eliminating these foods did not lessen tics to a lasting or significant way.

 

Since that time, we have learned that we are dealing with Lyme and Ehrlichia, and that the tics are likely a result of infection and inflammation. The tics tend to wax and wane based on immune system activity rather than food consumption.

[Emik]

Thanks everyone for the very informative and encouraging posts.

 

 

 

msimon3, I wanted to ask if there were any other signs that eventually led your son's doctor to investigate on the Lyme or was just the tics. I am asking because my daughter had red bumps on her body the summer before the onset while we were on vacation. We saw a pediatrician there who prescribed an anti-allergy medication and the bumps faded away in a day or two. However after, she got fever for a few days and her asthma was on/off (not quite under control) for at least the next two months. So I am not sure if this warrants for more research on the Lyme side. At this time, my daughter's pediatrician dismisses any possibility that her tics may be infection/inflammation related and she only did a throat culture test for strep - it was negative. Are there any specific test done for Lyme?

Edited August 31, 2013 by Emik

[msimon3]

Thanks everyone for the very informative and encouraging posts.

 

 

 

msimon3, I wanted to ask if there were any other signs that eventually led your son's doctor to investigate on the Lyme or was just the tics. I am asking because my daughter had red bumps on her body the summer before the onset while we were on vacation. We saw a pediatrician there who prescribed an anti-allergy medication and the bumps faded away in a day or two. However after, she got fever for a few days and her asthma was on/off (not quite under control) for at least the next two months. So I am not sure if this warrants for more research on the Lyme side. At this time, my daughter's pediatrician dismisses any possibility that her tics may be infection/inflammation related and she only did a throat culture test for strep - it was negative. Are there any specific test done for Lyme?

 

For us, vocal and motor tics were the rapid onset symptom and very obvious. Soon after we noticed mild OCD, anxiety, and emotional mood swings that correlated with the severity of the tics. Over months and years we also noticed some IBS, recurring low fevers, frequent unexplained rashes, periodic joint pain in hips/feet/arms, periodic fatigue, and periodic numbness in hands and head. Sadly, our first line of doctors (pediatrician x 2, neurologist, allergist) all said tics are common, they usually go away, don't do anything for them. Only after we pursued many other doctors and started treating for PANDAS did we realize it could be Lyme disease. We had labs done and visited two LLMDs who both agreed it was Lyme and Ehrlichia.

 

Prior to treating for Lyme, we also took anti-histamines for rashes. Sometimes it helped and sometimes not. Topical steroids (e.g. Cortaid) always made the rashes go away. We saw a couple of dermatologists about the rashes, and neither could explain the rashes beyond eczema or mild capillaritis and neither suggested a bacterial infection.

 

The biggest problem I see with Lyme disease is the level of disagreement and lack of education in the medical community. Most practitioners who do not specialize in Lyme are relying on guidelines for clinical diagnosis that are now decades old and proven inaccurate in the majority of cases (evidence of tic bite + annular rash = maybe it's Lyme disease). With all due respect to your pediatrician, unless they stay current with Lyme disease research or specialize in tick-borne infectious disease I would disqualify their opinion as well intended but relatively uninformed. Instead, visit an ILADS affiliated LLMD with your medical history and get a clinical exam. If the LLMD thinks it will help, or you want reassurance (as we did), blood tests can be done to look for antibodies to the Borrelia bacteria and other coinfections.

 

Another big problem with Lyme disease is the lack of accurate testing -- there is no definitive test for Lyme disease. There are 36 known species of Borrelia bacteria, with over 300 genetic variants seen across these species. Most tests look for your antibodies to one or more proteins of a single species (burgdorferi) and single variant (B31), and these tests are not perfect and sometimes show false positives or negatives. There are more accurate and expensive PCR tests that look for bacteria DNA itself, rather than your antibodies, but these tests may show false negatives due to a lack of enough bacteria in the blood sample. Basically, a positive or negative on a single test isn't going to tell you definitively if you have Lyme disease or not, and for that reason Lyme disease is diagnosed clinically. In our case, we had Western Blots from Labcorp and Igenex that both indicated Borrelia infection, and additional tests from Igenex that indicated Ehrlichia as a coinfection. These tests supported the clinical diagnosis that we had Lyme disease. Many LLMDs will test using the Igenex Western Blot as it tests for two variants (b31,297) rather than one.

[Emik]

Thank you very much for replying and sharing the information. I did not know much about Lyme disease, neither knew it may be related with tics symptoms until I found this forum. And is so important to know and watch for its symptoms. I will discuss with my pediatrician, we have an appointment Sep 17^th.

 

Thank you and I Wish you best of luck!

 

 

Thanks everyone for the very informative and encouraging posts.

 

 

 

msimon3, I wanted to ask if there were any other signs that eventually led your son's doctor to investigate on the Lyme or was just the tics. I am asking because my daughter had red bumps on her body the summer before the onset while we were on vacation. We saw a pediatrician there who prescribed an anti-allergy medication and the bumps faded away in a day or two. However after, she got fever for a few days and her asthma was on/off (not quite under control) for at least the next two months. So I am not sure if this warrants for more research on the Lyme side. At this time, my daughter's pediatrician dismisses any possibility that her tics may be infection/inflammation related and she only did a throat culture test for strep - it was negative. Are there any specific test done for Lyme?

 

For us, vocal and motor tics were the rapid onset symptom and very obvious. Soon after we noticed mild OCD, anxiety, and emotional mood swings that correlated with the severity of the tics. Over months and years we also noticed some IBS, recurring low fevers, frequent unexplained rashes, periodic joint pain in hips/feet/arms, periodic fatigue, and periodic numbness in hands and head. Sadly, our first line of doctors (pediatrician x 2, neurologist, allergist) all said tics are common, they usually go away, don't do anything for them. Only after we pursued many other doctors and started treating for PANDAS did we realize it could be Lyme disease. We had labs done and visited two LLMDs who both agreed it was Lyme and Ehrlichia.

 

Prior to treating for Lyme, we also took anti-histamines for rashes. Sometimes it helped and sometimes not. Topical steroids (e.g. Cortaid) always made the rashes go away. We saw a couple of dermatologists about the rashes, and neither could explain the rashes beyond eczema or mild capillaritis and neither suggested a bacterial infection.

 

The biggest problem I see with Lyme disease is the level of disagreement and lack of education in the medical community. Most practitioners who do not specialize in Lyme are relying on guidelines for clinical diagnosis that are now decades old and proven inaccurate in the majority of cases (evidence of tic bite + annular rash = maybe it's Lyme disease). With all due respect to your pediatrician, unless they stay current with Lyme disease research or specialize in tick-borne infectious disease I would disqualify their opinion as well intended but relatively uninformed. Instead, visit an ILADS affiliated LLMD with your medical history and get a clinical exam. If the LLMD thinks it will help, or you want reassurance (as we did), blood tests can be done to look for antibodies to the Borrelia bacteria and other coinfections.

 

Another big problem with Lyme disease is the lack of accurate testing -- there is no definitive test for Lyme disease. There are 36 known species of Borrelia bacteria, with over 300 genetic variants seen across these species. Most tests look for your antibodies to one or more proteins of a single species (burgdorferi) and single variant (B31), and these tests are not perfect and sometimes show false positives or negatives. There are more accurate and expensive PCR tests that look for bacteria DNA itself, rather than your antibodies, but these tests may show false negatives due to a lack of enough bacteria in the blood sample. Basically, a positive or negative on a single test isn't going to tell you definitively if you have Lyme disease or not, and for that reason Lyme disease is diagnosed clinically. In our case, we had Western Blots from Labcorp and Igenex that both indicated Borrelia infection, and additional tests from Igenex that indicated Ehrlichia as a coinfection. These tests supported the clinical diagnosis that we had Lyme disease. Many LLMDs will test using the Igenex Western Blot as it tests for two variants (b31,297) rather than one.

[mar]

Are you eliminating dyes and preservatives? And the main one is sugar! All candy was out of the house! That was real hard with dd. candy sickens me. If there is a gut issue all this needs to be eliminated along with gluten dairy corn. You need to start from scratch and take all sugars out and dyes. It was super hard I will not lie but I think that's what helped the most! If your children are young all the better to get them brainwashed with sugar is bad.

Mar

[Emik]

We have eliminated dyes and preservatives, we might miss it occasionally. Sugar is the tough one. It is everywhere - it’s even in the GF homemade bread recipes. So for sugar, we have just decreased it a lot, but still working on its elimination.

 

 

We have seen some decrease in tics. They are still there, all the time. However I am not sure if they are now less frequent or maybe the most bothersome were replaced with others, less obvious. I truly hope what we are seeing the improvement from the diet and this is not just a coincidence with a waning cycle.

 

 

One thing worries me a lot! She lost some weight and at one point of time it seemed that she lost her appetite. It really got me scared to the point I was ready to give up. It seems a bit better now.

 

 

From your experience, Is it ok to give occasionally (for her b-day for example) some Gluten&Dairy treats? Will this set back all the efforts or won’t make a huge difference if is once in a couple of months?

 

 

Regards,
Amy

 

 

[mar]

Yes sugar is the hardest! It is in everything and there is no way to eliminate 100 percent . With ds he had so many allergens at the point of being 7 . You are doing a great job and don't stop bc it does not happen overnight or in a month this was a long process that is still continuing 4 years later. Sugar is just bad but always remember one does not expect miracles. We did a whole allimination of eggs,gluten, yeast, peanuts , peas, milk, and pretty much 20 more things he was sensitive to bc of skin pricks and igg results. I know he had candida. The tics came and gone throughout the years but defiantly don't last as long, he had eye blinking which I haven't seen in three years and eye rolling which is once again could never complain of and shoulder shrugging which is after several years of diet that comes at times of stress but goes away within weeks . He is in baseball and basketball and I think it is totally stress related. Also let me say during that time he tested for all outdoor allergens. Mold, grass, ragweed,pollen all were real high and told at seven that he is ashma prone. I had doctors telling me he will have ashma and others trying to have me put him him on singular for 3 months and I was not okay with it. I just felt like this is not okay. We started total diet allimination with was very hard!!!! But ds is now 11 and no ashma which freaked me out and tics and overall health is so much better. Ds does not as has not taken any allergy pills in4 years .we tried it for several weeks with Claritin for his congestion in the beginning and it didn't work. We tried zantrace and no help. Diet helped him tremendously! Ds did loss weight and has a hard time gaining weight bc of his chance with eating! I learned to not worry he is 11 now and 5 foot 4 and weights 91 pounds . It took him a long time to gain weight but I know it's due to what he eats. He lost like 4 pounds due to his restrictions and had to gain that back and then some. To answer your question about giving in at a party. Yes in the beginning I let him have a plush horse cake slice at a party bc I was thinking really he always had this but did see the side effects . When you have been doing this for a while even a month you will see if it affects him and then you go from there. Back in the days it did set him off and made a difference but today he has cheese products and soy products and as long as he limits it he is good. I think with the whole plush horse cake he was just truly messed up with yeast bc I remember him looking At me and saying he does not remember anything and he seamed really confused and to the verge of crying. Since ds does not get the true life threating episodes it is amazing how things show up with behavior or congestion in his case or tics. Weeks or months will not give you the results for a quick fix. Four years later if he over does a certain food it will cause congestion which can lead to tics but he is doing awesome and he knows and listens to me with things that could set him off. He is in 6th grade and is doing great! I have learned that tics will not distroy my child! He does have symptoms off add and went throughout so much with diet and I actually know that he is stronger then me!!!! Don't give up bc you will eventually see a difference . Trier and error will teach you many things. Every child is different and you will learn if you continue.

[Emik]

Thank You so much! Your post is so encouraging! I read it like a couple of times:-) I will keep you posted.

Edited September 20, 2013 by Emik

[mar]

Emik mom this took a long time for us. There was no two weeks or two months or getting close to two years. Eventually once they are truly on there diets and eating better you will see it. This is due to all outdoor and food allegents and sensitivities. In my case the gut is and was a huge thing for my boy!! We got it better and he is doing well! He had 28 food insenitiities on his igg and then dozens of allergies on skin pick. Eliminate and watch gut ! He is in sixth grade and basically 96 percent tic free and happy..

[my2sons]

Emik, we too have seen improvement with diet eliminations such ss wheat, dairy, vety low sugar and artificial ingredients. We are 5 months in and we are at about 95% improvement. It is a slow and gradual process. We have generally seen a pattern of three steps forward, two steps back with the tics. Stick with it. It will not hurt and will most likely improve overall health. You have nothing to lose and everything to gain. My son is such a good eater now. He eats so healthy it amazes other people. Many of the kids at school are anxious to know what weird food he has for lunch each day. This is amusing considering his food is normal home cooked foods like soups, stews, pork chops, chicken, spaghetti, fruits and veggies.

[3bmom]

Lots of great info.! My son also suffered from tics and aversions to certain foods based on his thoughts. We went for 2 months where every time he went to speak he had tics. He didn't speak for 2 months. Found out thru therapy the majority of tics are really compulsions linked with thought patterns. Hard to know when they are young.

 

I also camed to realise it is important to watch out for "listening ears". With all the research, Drs, and conversations around why they are ill it is only natural for them to overhear us and fear strep germs, food, poisons etc.

 

We too did diet. Our Dr. Included rice because so many kids in his practice were reacting. This included most gluten free products like waffles etc. Our allergy numbers were life threatening and improved with eliminations about 30%. Then we eliminated as best we could GMO foods. He is at normal numbers ;D

 

GMO foods have been genetically altered to not die when sprayed with the weed killer Round Up. Round Up is patented as an antibiotic and the FDA just upped the legal amount allowed to be sprayed. First of all the pesticide can change the flora of our gut. Second This DNA is not recognized by our bodies causing an inflammatory response. As you eliminate the stressers to the immune system, layers from food, bacterial, viral infections hopefully you will see less and less tics. Hang in there! We see the light at the end of the tunnel and with soon you will too.

[pr40]

just on gluten and food sensitivity in general.

If you are sensitive, the path is one that involves your auto-immune bodies. when that is the case, stopping the offending agent is not enough. You got to wait for a while. rule of thumb is 3 months, sometimes longer. So, if stopping food came with the cessation of symptoms, the food may not be the cause.

Go three to four months gluten free, then introduce gluten. If you see changes upon the intro of gluten, gluten is among your causes.

[3bmom]

High Fructose Corn Syrup contains a neurotoxin and endocrine disrupters from the pesticide Imidacloprid. The same pesticide disrupting bee colonies thru confusion. It is banned in some European countries.

 

In addition corn has been genetically altered GMO to contain the genes of soil bacterium that produces insecticidal toxins. Basically these toxins are designed to kill bugs by blowing up their stomach. Our stomachs as most of you know is responsible for immune function along with over 80% of our serotonin. Makes you wonder why so many people need Zoloft. It also is a precursor for tryptophan so you can achieve restful sleep.

 

We cut out corn even though he tested non allergic and have seen great improvement. This was difficult because we used corn tortillas a lot. Maybe this can help. Remember it takes awhile to change. He ate his first full salad last week....2 years in the making!

[mar]

High fructose corn syrup I look out For like crazy and then you see those lovely commercials that it great for you. Yes like gluten and other sensitivities get them out for months. We did nine months for certain things and longer that is bc I was still working on his gut. But several years later he is able to have cheese products, tomatoes, watermelon and basically introduced one food at a time and by that point knew if he doesn't react he's good! Those are the fun times for ds bc it's like yes I could have this!!! And yes we had the moments of no lets hd offfor a couple of days. Of course let me mention that non of these foods were truely life threatening for him and if that is the case do it doctor supervision of course.

Mar