Is There A Connection Between Gluten/food Allergies And Adhd/tourette's?

[Tina76]

Hello everyone!

I have just recently discovered that I am most likely gluten intolerant. Now I am wondering if my son could have Celiac or if he has food allergies. I have read some very promising things about food allergies and neurological symptoms? Specifically, I read that once parents find the offending foods and they cut those out, ADHD or hyperactivity is cured. I read the same about tics. Does anyone here have experience with this? My son has had behavioral issues at school both years now, he just finished 1st grade. the first year was horrible, the second year we changed schools and they seem to work with him much better. They are also the ones who pointed out to me that, now that he's developed a tic (both vocal and motor) that they don't think he has ADHD at all but that it's looking like Tourette's. I am absolutely terrified of putting him on meds for it. Such strong meds on a growing system...I really want to avoid that at all cost. However I need to figure something out over the summer because he's already getting teased for it :-(

Yesterday I started cutting out all gluten, sugar and dairy. Is there anything else I should cut out? I bought Rice Chex for breakfast, almond milk to go with it (unsugared version), he can have rice, chicken, and vegetables for lunch and dinner ..and whatever else meats we cook but I will just have rice on the side...and all the fruit he wants in between.

If anyone has any advice, I would be so grateful! If anyone has experience with this, cured their children just by cutting out food, or has advice as to whatelse to cut out, please please, speak up! Also, when should I see a difference if it's truly food related?

Tina

[Korwyn]

I have a variety of neuro, psych, and CNS issues (including tics and muscle fasciculations) which are triggered by soy. I can't drink many of the nut milks because they have soy lecithin in them. This problem was masked by other issues so I didn't see it until after I went gluten-free, but it developed concurrently with my celiac disease.

Gluten triggers GI and psych (depression, extreme irritability, volatile mood swings), and other physiologic issues (headaches, muscle and joint ache, fatigue) as well for me, but just not those specific ones.

Soy for me will trigger (within minutes sometimes) panic attacks, tachycardia, hot flashes, extreme muscle fasciculations (one time it felt like someone was playing a xylophone on my left back ribcage), tics (especially around my eyes and I get tiny ocular muscle movements which make it hard to read or focus).

In your case I would strongly recommend you look into the GAPS (Gut and Psychology Syndrome) diet. I have several immediate friends and a co-worker who have had wonderful success with their children and themselves in a couple cases, including two kids with autism spectrum/anxiety spectrum disorders who are now fully normal and present no spectrum disorder symptoms - except when off the GAPS diet.

[Jestgar]

extreme muscle fasciculations (one time it felt like someone was playing a xylophone on my left back ribcage),

I felt like I was sleeping in a bed of mice one time.

[domesticactivist]

Do a search and you'll find some threads from me on both these things!

My 12 yo daughter has Tourette's. She is not celiac (did blood and genetic tests) but we did get her to go gluten-free with the rest of the family. Her tics have been MUCH improved by the GAPS diet! She also had attention issues (though not hyperactive) and seems to have mood stuff and anxiety as well (bipolar runs in the family, so I worry), but when her diet is on-point all that is better, too. She still has tics, which can be triggered by stuff like watching a bunch of TV or being really upset, too.

With our 10 yo son, who is celiac, we did the diet of course. He was dyslexic to the point of still not being able to read beyond a kindy/first grade level at 10. He also had classic ADHD symptoms. Within a few months of changing our diets (first gluten-free, which helped, then GAPS, which REALLY helped), those symptoms are gone and he can read on an 8th grade level with perfect comprehension.

So yes, I really believe there is a connection!

Oh, and we avoided meds. We were told we'd have to medicate our daughter for her anxiety so she could attend kindy. Her tics have been such that they'd be very disruptive to a classroom, but for the most part they haven't been physically painful to her. We probably would have been told to medicate her for that as well. Our son's antsy behaviour and trouble with written instructions would have been a classroom problem as well.

However, I knew I wanted to homeschool/unschool from the start, and that meant that when making medication decisions, we could focus on what the effect would be for OUR KIDS rather than THE CLASSROOM. The kids have done some things "late" and others WAY ahead of schedule. We chose not to medicate, and the kids are really great kids, and are successful in their social world despite the things that could have been a problem.

Over the years they've been able to participate in lots of classes that we've chosen, rather than the one-size-fits-all programming. And when we decided to change our diet, we were able to do it with confidence that cross-contamination wouldn't be a constant issue.

ps there is also more about this on my blog, which is linked in my profile.

[Skylark]

My brother had tics and hyperactivity when he was a child and teenager. He had motor tics in both his hands and face, and handwriting problems. He couldn't sit still and the doctor wanted to put him on Ritalin. There was also discussion of Tourette's but he was never formally diagnosed with it. Mom flatly refused drugs and put him on the Feingold diet instead. It didn't cure him completely, but it helped enough that the tics mostly subsided and he was able to focus well enough to improve his grades in school.

Open Original Shared Link

[Tina76]

Thank you all so much! I just looked into the GAPS diet, phew, it looks intense...but the good thing is I have the summer to work on his diet. Much easier than trying to do it while he's in school with snacks and lunches getting traded between friends. I will look at the feingold website too. I must admit that I am a "bit" crushed because I read so much about tics being completely cured from changing the diet, and here it seems more like a great improvement while not ever being fully cured. I had a feeling I was kidding myself and that those were probably like hitting the lottery. I mean, it's one thing to cut out an offending food, that's simple enough. But when things like stress set off the tics, that's nearly impossible to cut out. You can lessen it and avoid stressful situations, but let's face it, such is life. I can keep him away from the TV at home for example...but if he's gonna have tics everytime he goes to a movie theater then...sigh..it's a little overwhelming right now to be honest. The good news is that I have tics myself (although my mom never had me seen for it, I don't think she ever thought anything of it and i was fairly good at making them subtle) and they come and go, and I even had vocal ones at least once that I can remember (the same "hm" sound my son makes). And yet I never seemed to get it really badly so that gives me hope that my son won't get worse either. They're bad enough already, I can't imagine them getting even stronger. Kids would probably just flat out point fingers then :-(

But, unless I am totally kidding myself and grasping at straws, I think I have already noticed slight improvement today on day 2 of no gluten/dairy/sugar. He had to come inside for not following the rules when playing outside with his friends, and that's something that would have caused a major meltdown before, as in door slamming, screaming, crying etc. Today it caused him being upset, and constantly asking when he could go back out, but no more than that. He seemed really calm when he was watching TV, his tics in his face were a good 80% better I would say. However they were pretty bad again during dinner (it was just rice though, I don't think that could have set it off). At least I think/hope I'm on the right track, if I can reduce them by 90% and make them still be there but hardly noticeable, I would be ok with that. It'd odd that it stresses me out so much because I have known people in my life that had tics, one guy I knew would constantly swipe his hand over his face, as if to wipe something off, no less than every 5 secs. I thought ok this guy has quite the face wiping habit, but I never associated it with an actual problem, or even tics..heck, until my son's school mentioned Tourette's I never even knew that tics were a condition. So when i saw someone with tics I never thought anything of it. You'd think it would therefore not bother me now either, obviously I have them myself and I live a normal life. But i just stress when it comes to my kids, I don't want them teased...

Thank you all so much. This is a great board!

[srall]

My daughter is not diagnosed ADHD, however I suspect if she were born into a different family she would have been trotted off to the pedi for a formal diagnosis and possibly medication. I have weathered the raging tantrums instead of considering medication. Her pedi did mention putting her on Xanax for her anxiety last fall when we were first trying out the new diet. I told him we were staying off drugs and he said, "Well, you can give her more vitamin b and see how that goes." Really? We;re starting with Xanax? I had a similar conversation with my doctor who had her prescription pad out to write me a scrip for Xanax too, and when I said, "No way" She replied, "Well, then you'll have to exercise an hour EVERY day." As if that was going to be so hard that we might as well just all go on drugs. I think people have the same attitude about diets. It's so dang hard to be gluten free let's try everything else first. Oh...forgive me. I am ranting.

Back to the point. We're not doing GAPS (yet) but dairy/corn and gluten free has cleared up a lot of behavior issues, and definitely anxiety. I won't lie to you...There are still issues. I got asked the other day by our new pastor if my daughter was diagnosed with something...or if there was a "name for it"...not talking about gluten intolerance...he meant ADHD...but was trying to be diplomatic. (*Sigh*), But she's much improved. Maybe the GAPS diet is in our future. Personally I've improved a great deal on a grain free diet, but I haven't put my daughter through that yet.

I always think you should start with diet and exercise. I'm not against drugs...I just think they should be the exception, not the rule. And I should make it clear: NOT JUDGING parents who have gone this route. It's very difficult to have a hyper active kid.

[domesticactivist]

I think it's normal to experience some grief when you realize your kid has something "wrong." So let yourself experience that.

But then come back to reality Tourette's is really not so bad for most people, especially if it responds to diet. It took us a long time to figure out what was wrong because I didn't understand that tics can change over time, and in fact that is a hallmark characteristic! Instead, we thought she was being annoying. We'd get upset with her for "constant noise," and be embarrassed when she flapped her arms or made weird noises or whatever. Once we knew that she wasn't doing it on purpose, our whole attitude shifted and that helped her, too.

What's interesting is we recently met a family with a daughter who also has Tourette's. We were talking and I asked how serious it was. I was thinking how our daughter's tics were not too bad. But then she went on to say her daughter's tics were awful. I asked her how they presented, and she rattled off examples milder than my daughter's! So much is dependent on perception and the people around you. Her tics were a problem because of her school's environment. My daughter, who attends a very part time and accepting school with other homeschool kids did not have the same problems from the same symptoms.

There have been times where it has been very uncomfortable for her. A couple times she has gotten physically painful tics - a rolling shoulder and a kinking little finger. These have happened when she's had too much fruit, I think.

You can't control everything. But you can do your best. The best thing you can do is to work on your own perceptions of this condition. You can also educate the people in your child's life so that your kid won't get in trouble for the tics! You can't do much to stop other kids from pointing fingers, but you can help your kid deal with it, or if it gets too bad, remove him from the situation. Some kids are more affected by other people's meanness than others, so make sure to pay attention to how your kid feels about the way others treat him as well as the actual facts of what is happening.

[climbmtwhitney]

Make sure you don't overlook a possible role of artificial food dye, artificial flavors and artificial preservatives (like sodium benzoate and TBHQ) for hyperactive and "bad" behavior. My son was 6 (he's 8 now) when we figured out that he's a maniac on the stuff. He was a different child the first day I removed all traces. It's in nearly everything, even toothpaste. Now we know within 20 to 30 minutes if he accidentally consumes some. He's literally jumping from sofa to sofa. He can't even look you in the eye. In the past, before we removed it, it led to naughty behavior at school and home and to being overly emotional. Now he's very well behaved, can sit and play Legos for hours, does great in school, etc. Definitely something to check for!

[Tina76]

Yes, I am definitely still in the phase where I am shocked that my son might have a disorder. I tell myself that it's ok, there is much much worse he could have, it's "just" tics. Then I see him ticcing and I literally want to cry. It's probably pathetic on my part and my husband can deal with it much better than I can. Before i was told about Tourette's they didn't bother me so much. I figured he just has what I have, they'll go away, or he'll learn to surpress them like I did. (which I haven't really, but I can NOT do it when people are around me). Now that I have learned that this is a condition for which there no cure, but just ways to improve it, that's a tough pill to swallow for me. I feel like I have gone from this very bright son who has always been so healthy and never got anything but "he's doing perfect, mom" on his annual checkups, to a child who will have to deal with a life long disorder. His school told me that if he has that (TS), that it needs to be treated ASAP or it can get so out of control that he may need to be in special ed. I don't want to whine about it, I really don't. I am just really stressing over it and try to not let him see it. And now that I know what this is, I get so much more aggrevated by it. It's all I hear when he does the "hm" sound, it's all I can do to not leave the room because I just want to tell him to stop it already, but I know he can't.

I am trying to go all natural with everything right now, haven't looked into non food things yet though, so that's a great tip. I will get him different shampoo and tooth paste. I thought I was onto something yesterday because he had such a great, calm day and barely any tics, and today he was ticcing lots and was also really on edge and yelled alot. this in turn of course gets me all worried again because I am starting at square 1 all over again. I don't know how long it takes for tics to reduce IF a food is triggering it, but this is day 3 and I have yet to notice much improvement overall. Seems to me that gluten, dairy and sugar is not the cause afterall. Or am I not giving this enough time?

Would allergy testing help him, would you suggest that? I would like him to get allergy tested for all foods (the 100 food panel I read about, not just the most common 8) and seasonal allergies, but not sure if his pediatrician will order those tests if I request them for his tics? Can he even deny ordering them though?

Sorry for rambling. It's been a really rough day. I know I can't rush this and finding triggers can take forever, and they may never be found. I was just hoping to at least rule out the foods since I can only fully control what he eats during the summer. I know he would never stick to a plan once back in school. He's too forgetful/absent minded for that....

[domesticactivist]

Hi Tina,

I want to encourage you to give yourself permission NOT to make all the decisions right now. You get to take this slow. Don't come to any conclusions just yet. I know how devastating it is to find out something is "wrong" with your kid, especially if it may impact their whole life. You will get to the point where you will be able to accept what you are dealing with, and will be able to put it in perspective. For now, it's fine to have a big ol' cryfest. Do you have a friend who can be there just to listen to all your fears and let you whine a whole lot? It can help if you tell them exactly what you need before-hand, so they don't try to solve the problem for you.

I feel like I have gone from this very bright son who has always been so healthy and never got anything but "he's doing perfect, mom" on his annual checkups, to a child who will have to deal with a life long disorder. His school told me that if he has that (TS), that it needs to be treated ASAP or it can get so out of control that he may need to be in special ed.

You STILL have a very bright son who is in good health! It just needs a bit of fine-tuning. Even if the tics don't go away, he can do everything in life he dreams of and persists at.

The school is being extremely irresponsible, and I hope you will get the resources you need to effectively advocate for your son.

1. They are not medical professionals. It is NOT their job to tell you whether or not your son should be medicated.
   
2. Tourette's medications can be effective - but often they are not. They also have side effects. This is something to carefully consider with the help of a qualified pediactric neurologist.
   
3. If he is working on a level comparable with the other students in his class, he should be accomodated in the classroom unless he is causing a serious disruption to the other students' ability to learn.
   

Our pediatric neurologist told us that there is no reason to medicate unless the tics are interfering negatively with our child's life - causing her physical pain, resulting in serious social problems, etc. There are other ways to deal with social problems, as well. He said there is no reason to medicate as a preventative to it getting worse.

Also, check your own experience against what the school is telling you. These people, who probably don't know the first thing about Tourette's, are telling you that if you don't drug your kid, it's going to escalate out of control. Is that what happened with your tics?

I am trying to go all natural with everything right now, haven't looked into non food things yet though, so that's a great tip. I will get him different shampoo and tooth paste. I thought I was onto something yesterday because he had such a great, calm day and barely any tics, and today he was ticcing lots and was also really on edge and yelled alot. this in turn of course gets me all worried again because I am starting at square 1 all over again. I don't know how long it takes for tics to reduce IF a food is triggering it, but this is day 3 and I have yet to notice much improvement overall. Seems to me that gluten, dairy and sugar is not the cause afterall. Or am I not giving this enough time?

3 days is nowhere near enough time to know if it has made a difference. It took me a couple months to do better with my anxiety stuff and get over sugar withdrawals. In fact, my daughter's Tourette's got WAY WORSE when we first went gluten-free! She got the worst tics of her life those first couple weeks. Now she still has some (currently whistling, which is kind of cute, the way they come out mid-sentence) but it's not nearly as severe as before.

Would allergy testing help him, would you suggest that? I would like him to get allergy tested for all foods (the 100 food panel I read about, not just the most common 8) and seasonal allergies, but not sure if his pediatrician will order those tests if I request them for his tics? Can he even deny ordering them though?

Sorry for rambling. It's been a really rough day. I know I can't rush this and finding triggers can take forever, and they may never be found. I was just hoping to at least rule out the foods since I can only fully control what he eats during the summer. I know he would never stick to a plan once back in school. He's too forgetful/absent minded for that....

I don't know if allergy testing would help or not. I'm kind of jaded about it, actually. The IgE test did uncover corn for my son which made a huge difference. But with all we've learned since starting the GAPS diet I am skeptical about the IgG test results for other foods. According to Dr. Natasha Campbell-McBride, if the gut is leaky, you will show up reactions to anything you're eating regularly. I like having as much information as possible, so I'd probably do it in your shoes. But I would carefully consider what I wanted to do with the information.

You may be surprised how your child changes if you dramatically change his diet. We did the GAPS diet - before it, our daughter was vegetarian and an EXTREMELY picky eater who basically only liked sweets and cheese. Before changing our diet, both kids had attention issues which are now resolved. And since they've been able to really feel the difference, they've both been committed to the diet - even at sleepover birthday parties. It helped that we included them in coming to the decision to try dietary changes, and we framed it for them in a very positive light.

Keeping up a diet in the school system is more difficult, but public schools in the states are required to accommodate and facilitate that if you do the paperwork right.

Finally, I suggest you watch the short film I Have Tourette's but Tourette's Doesn't Have Me (google the title to find clips). Some people have shared this with their school administrators with positive outcomes.

[mushroom]

Oh, gosh, I am really sorry that you are going through all these traumas, and I do feel for you No, I don't think your reaction is pathetic, it is perfectly natural. One day you have a perfect little boy, the next your are told you have a child with Tourette's, it is distressing. But take heart that he may well be greatly improved if not cured with the diet. It is way to soon to expect improvement from a neurological gluten symptom - they take much longer than the GI symptoms (well, actually, it would be really early for GI too.) Work with him over the summer but don't distress him about his tics or let him see that they distress you. Just work with him on his concentration and his diet and how to avoid gluten and the whole family will have to learn the GAPS diet if that is what you intend to follow. You will probably be surprised how different things are when he goes back to school in the fall. I wish you much success in your endarvours

[Korwyn]

Hi Tina,

I want to second what DA said. Three days is not enough. I know with my neuro and psych issues it took a solid month (on GAPS) before I had my first week without tics in my eyes and especially my arms. Which is kinda embarrassing when I'd be sitting in a meeting at a table and people next to me keep looking out of the corner of their eyes because all the little muscles in my forearm are rippling and spasming. I wore a lot of long sleeve shirts. And it was probably six weeks before I had my first week where I slept all night without panic or anxiety attacks or tachycardia. So give it time. It is a gradual process of healing, and his body having to relearn how to process nutrition.

Also, just FYI, rice is indeed an 'avoid' on the GAPS diet. The starchy carbs and all grains are on that list.

[jeaniec]

I'll set aside my opinion on gluten / neurological correlation and just give you the honest experience my son & I had. My ten year old was recently diagnosed with Type 1 Diabetes & Celuac Disease - biopsy showed Celiac came first (don't get me started on Celiac causing the Diabetes). Anyway, he had to go gluten-free for life and I decided I would support him by going gluten-free myself. Preface - months before these diagnoses, my son started blinking ALOT! Much like a tic. I feel so bad now but at the time it was annoying and I thought he could control it 'Stop it!!!!" "Stop blinking"!!! Diagnosis, no gluten for 2 months and the blinking stopped 100%. It doesn't end there... for years I had such deep tingling of my legs at night I had difficulty getting to sleep - my legs felt 'dead'. I never consulted with a doctor because I figured it was bad news and just didn't want to deal with it. Guess what? Now that I'm gluten-free, it's completely gone. Take what you want from this - I think it's pretty significant. Living without is not easy but if you have reasons, it is well worth the effort. It is poison for some people.

[Tina76]

What wonderful people you all are. Thank you so much, from the bottom of my heart, for taking so much time to tell a stranger it will be OK. You have given me back much hope that I can help him with this afterall. Yesterday I really had lost all hope. To top it off, I watched some comedian on TV who, out of all things, made fun of Tourette's and how he was waiting to see a "polite" Tourette's, someone who blurts out nice things instead. I was watching this with my husband and brother in law (who does not know) and let me tell you both my husband and I got dead silent. It was NOT funny obviously and it made me realize in an instant what other parents deal with that have children that struggle with soemthing, or even people who deal with something themselves. Anyway I just went to bed and had nightmares all night long about TS. Needless to say this morning did not start out well, as soon as I "remember' this "issue" in the morning my day gets a little gloomier.

With that said, your posts made all the difference. Yes, I do have these myself, and I did not need medication, this is also something i have told myself all along, but it was nice to hear it from someone else! I was so against medication anyway, I don't think it is something I can consider. The side effects have me too scared. I like to leave medication for truly life threatening things.

Again - thanks for putting things back into perspective for me and telling me your stories. It has helped so much to hear about good outcomes...and knowing that 3 days means nothing at all yet!!

[domesticactivist]

I'm glad you're feeling better! It takes some adjusting but before you know it, all this will just be another part of life. You obviously love your kid and are dedicated to doing what's best for him. You and your family will be able to figure out how best to handle all this. It just doesn't all get figured out overnight.

[German Ginger]

Hey!  It's years after your original question, but I just want to post this information to help potentially others in the same situation.

There is research now confirming that Tourettes tics can be healed (yes "Healed") going gluten free:  Open Original Shared Link

And starting two years ago when our son was 6 years old he also developed Tourettes tics.  I have a short video of him we took at the time we first observed his symptoms, but unfortunately it is too big to be accepted here   He had an involuntary eye-roll and started making involuntary repetitive clicks with his tongue and whistles through his nose, along with almost monthly some new noise or repetitive behavior.  I did a TON of research and based on the fact our family has Non-Hodgkins Lymphoma, Rheumatoid Arthritis, IBD, and a lot of other issues centering around the gut (although I had many doctors tell me those issues were not necessarily gut-related), and the fact that I healed my Raunauds Syndrome, Carpal Tunnel Syndrome, Acne, and IBS by going gluten-free, I had our son tested for Celiac (which still is the only test for any kind of gluten sensitivity available in Germany).  Our son came up negative.  Doctors and family didn't believe our son's Tourettes had anything to do with gluten.  I have cooked exclusively gluten-free for my family since that time, but we still went out to restaurants often.  We made what we thought were gluten-free choices at those restaurants (my husband usually grudgingly supported my wanting to keep our son gluten-free).  Last August (my son was 8 years old), I still believed our son was having serious behavioral issues sometimes (depression) and his growth had fallen behind his peers.  His bloating observed (& diagnosed with MRI) when he was 6 years old had disappeared on the diet I was cooking him, but I wanted further food sensitivity testing done.  We flew to England and spent 1,000 dollars on food sensitivity testing including another Celiac test.  THIS time my son came up positive for Celiac Disease.

We flew home and have been out to maybe 1 restaurant since that time.  I threw out all soaps and shampoos with any gluten/gliadin ingredients.  Our son's Tourette tics and sounds are GONE.  Gone.  100%.  But if you are out there and are experiencing the same symptoms, don't wait for an autoimmune disorder diagnosis and after you are broke in the bank.  Try a STRICT gluten-free period for 2-3 months.  Don't substitute that crappy gluten-free processed stuff either.  Go with real-foods because there are plenty of quality resources out there now:  Open Original Shared Link  and a real-foods diet is what's going to heal your gut lining (perhaps with the assistance of quality glutamine supplementation and/or plenty of bone-broth soups)

May God bless you all and your search for healing!