Welcome to Gluten Free for Tics

[Caryn]

Hi Meg,
Welcome to the board.
Before the diet we never equated allergies to tics either.

Things I have learned since we discovered the allergies--

1. celiac/leaky gut can cause multiple allergies to develop because excess yeast and bacteria in the gut inhibit enzyme production.
2. vitamin D deficiency also lowers immunity and can lead to allergies (too much sun screen in summer and being indoors all winter).
3. low stomach acid can also lead to allergies/digestive issues and apple cider vinegar with meals is helpful for that.
4. too many antibiotics can lead to leaky gut as it kills the good bacteria and allows the bad/and yeast to flourish.

I have read that healing the gut reduces and improves allergies. I think that is true, but so far we still have problems with gluten and corn.... and may always.... as our son tested positive for the celiac gene. But originally, our son had 17 allergies (most mild and moderate). Now we only avoid the 3 severe ones exclusively.

Eventually we went to a pediatric DAN doc (Defeat Autism Now) and had a panel of tests done. Our son does not have autism but many of the protocol they use has proven helpful for us. We currently have a general practitioner. I think any doctor with an open mind and familiarity with the family could prove helpful, especially since there is so much info available now. We bought Sheila Rogers book (Natural Treatments for Tics and Tourette Syndrome) and gave it to our G.P.
Caryn

[mamakate3]

That sounds great for you (with the doctor).  Our last doctor we went to with this looked at me like I was crazy when I asked about food intolerances. Goodluck with your son! 

[mommy1209]

Hi! My son started with tics around age 7 and a half almost exactly one year ago! We have just gone dye free. Last night he had corn on the cob and OMG! (popcorn too and night) He was ticing alot. For the most part his tics are mild. Nobody other then family knows. He started with vocal throught clearing and about three months later had a bad neck tic, ouch! TV is a huge tigger! Tics alot at night. tired I think. He craves sugar! I know all kids crave it, but he really loves sweets! Is dye free a good place to start? I had a food skin test done. It came back negative. He has loose stools with cramping quite often. So i thought maybe food allergies. I decided to try dye free. He does not have ant ocd or add symptoms. Just tics! He is the sweetest and funniest lil guy! Want to gid rid of these tics so bad. I am OCD over it myself! Help! what should i do next. He has tics when he eats. mostly vocal! Was it the corn or the butter? or nothing to do with food at all.

[Caryn]

Hi Mommy1209,

Welcome to the board.

I sure hope corn isn't a problem for your son....

Take a look at the popcorn bag that he ate last night. Are there a lot of chemicals in the ingredient listing?
Most folks start with eliminating artificial flavors, colors, and preservatives. If that doesn't work then they shift to allergies as a possible cause. Dairy can be a trigger too, but I think you should start by removing artificial chemicals first before leaping into eliminating allergies. 

The Feingold organization is a great resource for information. They provide members with tons of information, including a booklet that lists safe products that can be found in your local grocery store.

Be wary of too much bread, yeast, and sugar in your little guy's diet. This could cause candida problems and many of these kids have problems with candida when they get the lab testing done.

Natural sweeteners like honey are better.

Magnesium is a great supplement to start with too. It may help reduce the ticcing, especially neck issues. 

I know how you feel right now. Just take a deep breath. Try not to let your son see your anxiety about it either because sometimes that makes them tic more.

I hope this helps.

[Connie]

Hello, not really sure if I am posting to the proper place but my name is Connie and I have a 10 year old son that has been experiencing different forms of tics for the past year.  Started with a stuttering then moved to a breathing thing and now head nodding.  My pediatrician said he would outgrow these symptoms. He also has a difficult time getting to sleep. However, I have been very concerned so I was browsing the internet.  What caught my attention was the allergy relation.  My daughter whom is 12 and my husband both have Celiac disease ( allergy to gluten).  It never occured to me that my son may be experiencing a symptom of allergy.  My daughter and my husband have completely different symptoms when they eat gluten.  I have an appointment with the Pediatrician in June and will discuss this with her.  Would be very interested to know your opinion based on this small amount of information I have given to you.  Thank you so much.  Connie

[Caryn]

Connie,
My son has celiac too, but also has another non-celiac gluten intolerant gene. There have been studies done that connect celiac to blood-brain barrier leaks through elevated zonulin levels. When there is a leak in the blood brain barrier then celiac can cause neurological symptoms (proven with schizophrenia and gluten ataxia). You will not find an official study on tics. There hasn't yet been one on Celiac and Tourette Syndrome specifically. If your son has leaky gut that could very well be causing the neuro symptoms you see. Is he eating a gluten free diet or is he on a regular diet?
In our case there was a whole lot of stuff going on. Our son also has chemical sensitivities. He is on the Feingold diet. For him the artificial flavors, colors, and preservatives in his original diet also exasperated the ticcing. He no longer has tics anymore. We have been on a strict diet for over 2 years. We use immune boosting and brain boosting supps (vit E, vit D (in winter), B complex, magnesium, zinc, fish oil, and amino acid supps and digestive enzymes. We also use daily probiotic. (Kefir). He also hasn't been sick in quite a while. I believe his ticcing is immune related.
We saw improvement after his gut healed and his antibody levels went down. It took nearly 9 months.
Caryn

[Connie]

Hi Caryn,

Thank you so much for your reply.  I felt a little overwhelmed by the information! I have never heard of Leaky Gut or gluten ataxia.  How did you find out that your son was suffering from all of these issues?

My son is on a regular diet.  Can you recommend specific tests that I should request?  His doctor appointment is on June 22nd.

I am very happy to hear that your son is doing so well.

Connie

[Caryn]

Connie,

I just got back from the Conference in Dallas on natural treatments for Tics and Tourettes. My head is spinning with new information. I will answer in more detail once I get a little more time. Check out Great Plains Laboratories (Dr. Shaw) for information about all the available lab tests.

In the mean time, reduce sugars, starches, breads, and eliminate ALL yeast.
Eat whole foods, fresh fruit and veggies, organic meats, and drink plain kefir. Avoid artificial flavors, colors, and preservatives. If there is a fungal problem this will help. You should notice a difference in a few weeks, especially if you are strict and then reintroduce after at least two weeks. A sickish feeling will result if there is a fungal issue.

After all I have heard and read I really believe this is a good first step.

[rad3]

Hi Caryn,
I emailed you about my daughter a week or so ago. We had started the gluten free diet a few weeks ago....and I had not seen much improvement. Well...then we did....it looked like we were heading in the right direction...I thought WOW it's really working....and actually let myself believe the diet might be it! Then...today....well....the tics that started to fade....seem to be increasing. I feel so defeated. I'm just sick of this roller coaster ride. I was just wondering if this is typical....or if it's a sign that the diet might not be it for us. We have been VERY careful with the food...and I know she has not eaten anything wrong.

[Caryn]

It is typical. I think 'roller coaster ride' is a perfect analogy. Don't put too much pressure on yourself to 'cure' the tics right now. Time heals everything.

The folks at Enterolab described to me that it takes quite a long time for the antibodies to go down and likewise, a long time to get them to go up again once you are committed to the gluten free diet. My son just got stool tested about a month ago and his levels are still elevated 2 YEARS after going gluten free! They are only slightly elevated and we are at a point now where I no longer see neurological stuff like I did in the beginning.

We had a lot of ups and downs the first four months. I made a commitment to myself and to my son that I would stick with the program for at least six months. I had him off of 17 things-- wheat, corn, yeast, peanuts, chocolate, sugar, dairy, etc..... We started in the spring and I promised him a GF chocolate cake for his brother's birthday in November.

In the beginning I saw a lot of wax and wane cycles. I later learned that it was odd ingredients-- through trial and error-- that were by products of either wheat or corn. I stopped using things like table salt and moved to sea salt because I learned after giving him macaroons that he reacts to maltodextrin pretty badly.

What else are you doing besides the gluten free diet? Be patient and give it a little more time. Those antibodies are probably pretty high and she may be reacting to the slightest gluten in the environment. (Without getting too technical, even some amount of gluten free contains minute amounts of gluten and folks tolerance varies depending on how new they are to the diet and how out of balance their bodies are.) Try to depend on fruit, veggies, and meats more than packaged products and see if that helps.

Time will heal things. This is hard work and takes a lot of patience but the rewards are phenomenal when you get to that point when your kid is no longer sick and reactive to everything.

I used to give benadryl dye free capsules when my son waxed and they seemed to help. He doesn't need it anymore. If the benadryl helps then you know it is a histamine reaction. Don't buy the regular because the artificial colors and the corn syrup causes these kids to tic.

[rad3]

Thanks for responding....It's good to hear that you had ups and downs too. Makes me feel like NOT giving up just yet. I feel like these dam tics are playing games with me!
We are GF,Dairy Free,No Artificial ingredients. I give her probiotics(just started about 2 weeks ago)..and tried the digestive enzymes..but she hates them. I was doing Natural calm too...but now she refuses to drink that too! She is pretty strong willed...so if she doesn't like something...it's hard to get her to take it. I put the probitics in her natural lemonade...so has no idea it's in there or she would probably refuse that too! It's just very hard....and such an emotional ride.

[CeliacMom]

Hi All:

I am new to the forum but not new to the issues for children/school, etc.  My story is a bit disheartening from the elementary school perspective.  Well let me answer the required ??'s for you first so you can get the gist of our family's experience. 

    * How old is your child (or yourself)?  My son will be 8 in a few weeks. 
    * How long ago did you first notice symptoms?  From the time he was around 2yrs old
    * When was your child diagnosed? this past august right before his 7th birthday.  (After 5 years of spending a lot of time, money, and energy because the medical profession wouldn't listen)
    * What treatments have you tried? What worked? What didn't?  Son is on GF diet and lots of supplements.
    * What, if anything, are you doing in addition to going gluten free?  vitamins, supplements (fish oil, dha, epa, Nordic Naturals, Yummi vites DHA formula, calcium, Align probiotic, allergy med)
    * How is your child (or you) doing now?  Better
    * Is your (or your child's) condition stable, or do symptoms continue to wax and wane?  No real rages like last summer and much better digestive wise, but I do still see some of the depression like symptoms and really worried about the ADHD symptoms from school..... He has had a rough two years at his elementary
    * Do you see a pattern in symptoms?

We were able to get lunch room accomodations for our son last year, BUT spent the ENTIRE school year with a school system that refused to remove the Gluten exposure from his classroom.  After filing with the dept of education we had a couple very long IEP meetings and accomodations were finally agreed upon but there were also multiple OCR violations which we are still working on.  The school excluded him from activities, did not take the neuro issues seriously and we are just DREADING going back to this school this year since the teachers have no brain training and we all know that Celiac causes neuro issues.

Our principal's wife was a nurse who said that Celiac does not cause Neuro issues and made it INCREDIBLY difficult to get any cooperation from the Principal since he felt his wife was the end all be all even though her specialty was NOT kids with Celiac.  Our son was the only diagnosed Celiac in the entire elementary, so there again new disease for them and very little information..

We tried the education route, but it failed miserably for the ENTIRE year....  Hoping new teacher and new principal will be a better combination this year.  Also our son has done awesome at summer camps all summer and has had NO rage issues so he is doing way better.....  Hopeful that the last two years have not made the school so jaded they can't or won't see his progress. 

Sorry to sound so negative but after 2 years of watching teachers who were first year teachers and administrators who just didn't get it, I'm having some real anxiety about this coming year.

Keep your fingers crossed for us that new administration will bring a new approach and perspective to issues. 

Our FP gave our son Concerta for the ADHD symptoms and the tics were TERRIBLE.  His mouth was drawn (like a stroke victim and he couldn't stop talking)

[Caryn]

Hi CeliacMom,
Welcome to the board!

From your introduction it sounds like you have had quite a bumpy two years dealing with CD! 

Our son is 6 1/2 and doing really well right now. Our biggest issue is keeping his weight up right now. He's doing pretty good.

I noticed from your post that you didn't mention anything about avoiding artificial flavors, colors, and preservatives? Most Gluten free products already do that anyway, but there are many products out there that are naturally GF and contain these things. For our son the artificial products had to be removed before symptoms of ADHD lessened. We also learned that his corn allergy was also contributing to his ticcing and hyperactivity. Your son may or may not be allergic/intolerant to corn too, but many newly dxd celiacs have problems with most grains at onset due to fungal issues that developed while eating gluten.

If artificial products are contributing you should see a difference right away after removing them (within 48 hours). Corn is harder and takes longer IMO because there is so much to learn about where it hides, etc....

I understand your struggles completely in regards to the school setting. This summer I wrote a very long descriptive letter about my son and delivered it to the principal and asked that EVERY teacher in contact with him get the letter as an FYI. If it helps, include scientific studies along with your letter. If you haven't already, you could look at the Feingold Program for ADHD. We joined it two years ago. I personally met Shula Edelkind at a Conference in Dallas last May. Her story is inspiring.

[CeliacMom]

Thanks Caryn.

YES we have removed MOST artificial colors, etc.  He gets them rarely.  I cook pretty much everything for him and we ALWAYS pack lunches, dinners, etc. when we are traveling or visiting anywhere. 

He is also doing EXCELLENT at reading labels and he even already knows some of his triggers. 

I didn't include that as I already felt like kind of a board hog with all my ramblings! 

I have him on about every supplement known to man and he has not been sick since May yippeeeeee....  (hmmm out of school and has done better behaviorally and systemic but yet the school couldn't see what they were doing to him???) Sorry I digress AGAIN.   I have noticed that the Align Probiotic really helps him alot with the digestive issues.  I took him off and tried another probiotic and he paid dearly for it and I felt terrible, but I had to know if it was helping or not. 

If we ignored our children's issues like the school did they would report us to CPS but you report your school, file a complaint, etc. and NOTHING happens.  Guess that's why so many parents skip the complaint step and go straight to the legal system and due process hearings.  Which is what I will DEFINITELY do immediately if I have the types of issues again this year w/ the school.  I'm tired of trying to do this with very little support from the school. 

My son also had "leaky gut" and I do think that really sealed the deal in regards to him having the whole host of the ADHD symptoms.  I finally broke down last year and gave in to his pediatricians urging to try Concerta and it was awful.  The Gastroenterologist said that ADHD drugs aren't really a good idea with Celiac kids (after the fact of course.... it only took me two years to get to the point to even consider trying them BUT I will NOT do it again!)....

I am really interested in the Neuro connection as my son was diagnosed early on as a very high functioning Autistic due to his "sensory integration disorder" and probable "compromised immune system".... this was of course before the six figures later that we had spent to finally find the Celiac diagnosis. 

It is amazing that we as parents are so often discounted when it comes to physicians and finding out what is actually wrong with our children.  I sure wish that there were some better trained physicians in the Midwest. 

I keep praying that we will get some doctors who have gone through Dr. Fasano's internship at the Center for Celiac Research at the University of Baltimore.  We had the opportunity to meet him in April, 2009 and he is so passionate and so wonderful!

[CalebsMom]

Hello. This is my first time on the site so I wanted to introduce myself. I have a 10 year old son and 4 year old daughter. My 10 year old has had chronic motor tics for almost one year now. They began fairly suddenly. We are currently awaiting test results from EnteroLab for both gluten and casein intolerance. We decided to do the testing because two cousins (one with PDD NOS and one with MS) tested as intolerant to both. Both cousins have been on GFCF diets for several months now and the results, especially for the one with PDD, have been significant. In doing the testing, I was most concerned about my daughter, who has some significant behavioral difficulties (I've worked with children all my life, but have not been able to adequately address her difficulties), along with asthma, eczema, elevated liver levels which doctors can't explain and chronic constipation. However, the more I have read, the more I am thinking my son probably has the same issues, as he has had the motor tics since the end of last summer and has increasingly shown signs of depression. I've  been taking him to see a therapist, who actually also shared that she felt there might be soemthing physical underlying his issues and she felt he might be an allergic child considering the dark circles under his eyes and low energy level. He also has chronic constipation, for which he takes Miralax every other day. I'm just curious to hear if others have experienced similar circumstances with their children. Thanks, Jamie