Are tics a symptom of Celiacs?

[FunShine]

My young daughter recently started complaining about stomach aches on a fairly regular basis, I took her to her doctor and was told to have her eat more fruits and veggies.  My mom never got tested, but also had severe stomach aches and eventually went gluten free and says she feels much better.  Along with the stomach aches my daughter recently started a tic where she sort of throws her head back involuntarily.  I googled “stomach ache and tics” and saw an article that said gluten could be the cause.  Wondering if this is something that anyone else has experienced?  I have a history of autoimmune diseases (Hashimotos, geographic tongue, psoriasis) and was thinking of asking my doctor to test me as well to see if celiacs could account for my recurrent canker sores and awful fatigue.  I’m wondering if it’s possible that celiacs runs in the family, but wasn’t ever diagnosed.

[trents]

Celiac disease does have genetic base to it and so does run in families. Most research has pinned the likelihood of developing celiac disease by first degree relatives of someone who is a celiac at about 10%. However, one recent large study done by the Mayo Clinic with over 300 people found that 44% of first degree relatives of people with celiac disease  had celiac disease themselves.

I believe it would be wise to have your daughter and yourself tested for celiac disease. The first stage of testing involves a blood draw to check for antibodies that are produced by celiac disease. Many primary care docs are pretty ignorant when it comes to testing for celiac disease so go armed knowing what you want. I suggest you ask for three antibody tests: 1. total serum IGA, 2. tTG-IGA and 3. Deamidated gliadin peptide (DGP IgA and IgG). Here's a primer: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

It's important for those getting tested to continue to eat regular amounts of gluten until all testing is complete in or not to invalidate the testing.

There is also something called NCGS (Non Celiac Gluten Sensitivity) which is 10x more common than celiac disease but for which there currently is no way to test but to first rule out celiac disease. They share many of the same symptoms. Either can produce neurological effects which may explain your daughter's tic. Of course, stomach aches and constipation are common to both.

And welcome to the forum, FunShine!

Edited July 7, 2022 by trents

[FunShine]

16 minutes ago, trents said:

Celiac disease does have genetic base to it and so does run in families. Most research has pinned the likelihood of developing celiac disease by first degree relatives of someone who is a celiac at about 10%. However, one recent large study done by the Mayo Clinic with over 300 people found that 44% of first degree relatives of people with celiac disease would themselves have celiac disease.

I believe it would be wise to have your daughter and yourself tested for celiac disease. The first stage of testing involves a blood draw to check for antibodies that are produced by celiac disease. Many primary care docs are pretty ignorant when it comes to testing for celiac disease so go armed knowing what you want. I suggest you ask for three antibody tests: 1. total serum IGA, 2. tTG-IGA and 3. Deamidated gliadin peptide (DGP IgA and IgG). Here's a primer: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

It's important for those getting tested to continue to eat regular amounts of gluten until all testing is complete in or not to invalidate the testing.

There is also something called NCGS (Non Celiac Gluten Sensitivity) which is 10x more common than celiac disease but for which there currently is no way to test but to first rule out celiac disease. They share many of the same symptoms. Either can produce neurological effects which may explain your daughter's tic. Of course, stomach aches and constipation are common to both.

And welcome to the forum, FunShine!

Thanks for the welcome and the response!  Is there any downside with having her take a break from eating gluten to see if it makes a difference and then restarting gluten prior to getting the test?  I have a feeling it won’t be a quick experience to get her tested (and she’s terrified of the doctor) and if it’s possible removing gluten would help I can’t imagine delaying what could make a difference to her.  This isn’t the first tic that she’s had, but it’s the most noticeable and uncomfortable for her. It hurts me to see her going through this on top of the stomach aches.

[trents]

Sure, you can trial a gluten free diet first. But if she eats gluten free for a significant time and then goes back on gluten for testing then you may find she has more intense reactions to it as we typically lose all tolerance of gluten if it has been withdrawn for a significant period of time.

The Mayo Clinic guidelines for the pretest gluten challenge is the daily consumption of 2 slices of wheat bread (or the equivalent) for 6-8 weeks leading up to the antibody test. Of course, that amount of bread is for an adult.

How old is she?

Edited July 7, 2022 by trents

[trents]

There are also home celiac test kits available from companies like imaware for around $100.

[FunShine]

She’s 7, and terrified of the idea of a blood draw.  I’ve had her eat gluten free the last few days and she hasn’t complained of stomach aches yesterday or today.  But wow, eating gluten free is a big change for us.  On one hand I would love to get an answer for what’s going on for her, but the idea of being gluten free is a bit overwhelming.  We pretty much live off of pasta at our house!

[trents]

Learning to eat truly gluten free involves much more of an education curve than most people realize. It not only entails eliminating major sources of gluten such as bread and pasta but hidden sources that you never expect. Almost all canned soups use wheat starch as a thickener. Did you realize the Campbells tomato soup has wheat in it? Did you ever think about soy sauce having wheat in it. Read the ingredients on a bottle of soy sauce sometime. Some chocolate syrup contain wheat and many low calorie pancake syrups use wheat starch as a thickener. Many corn based and rice based breakfast cereals will have "malt flavoring", an ingredient derived from barley, one of the three gluten containing grains. Dried lentils are typically heavily cross-contaminated with wheat kernels because of being stored, transported and processed on the same equipment used for the lentils. Pills and supplements can use wheat starch for a filler. Etc., etc., etc. It's easy to eat low gluten but eating gluten free is another matter. And unless your whole family quits using gluten foods in the home, your daughter is just about guaranteed to experience cross contamination on a regular basis. And when you eat out, even though you order gluten free food items for your daughter, you have no control over how that food is handled back in the kitchen. They will do stuff like boiling the gluten free spaghetti noodles in the same pot of boiling water they just cooked the wheat noodles in. They will cook the beef patty on the same grill as they cook the breaded fish sticks, etc. 

It only takes a few crumbs of wheat to elicit a reaction in many celiacs.

Perhaps this primer will be helpful: 

Another thing to reckon with is that once you go gluten free and have been that way for a significant time you lose whatever tolerance for gluten you may have had while still consuming it. This means more intense reactions to being "glutened" than pre diagnosis.

[FunShine]

Yes, I’ve been reading the labels on everything and feel pretty confident with what she’s eaten at home.  But yes, we have a ton of items with gluten in our kitchen and can imagine that cross contamination would happen constantly.  I was thinking about the cross contamination when eating out, is it even possible for people with celiacs to safely eat out?  While I would love to have an answer for what is happening with her (and myself), the idea of having to completely avoid gluten is honestly scary.  Would someone with celiacs who hadn’t gone gluten free tend to feel better with low gluten?  Or would they only feel better if there was no cross contamination at all?  

[trents]

Yes, it is all very intimidating at first because it demands a radical change to eating and social patterns. Eventually, it becomes the new norm. Over time you learn workarounds. Things like taking your own food to social events, focusing on being the host instead of the hosted, helping family and friends understand how they can (when necessary) cook a safe meal for your daughter.

Studies have shown that eating out is the number one sabotaging activity of of the gluten free effort. Some suggestions I have would be to choose Mexican eateries since most of their food uses corn instead of wheat. I can also eat at some Chinese restaurants if I discover that they have waiters or waitresses that are knowledgeable about avoiding gluten. The key seems to be avoiding anything containing soy sauce (choose the "white" sauce instead), rice noodles instead of wheat noodles, and white rice instead of fried rice (it has soy sauce). And of course, no fortune cookies. When eating out at other restaurants look for those that have a gluten free menu section. Some things will obviously not be at risk for cross contamination such as fresh fruit and hard boiled eggs and baked potatoes. Ask the staff to cook things in clean pans and pots. I know, not much of the above is kid friendly. By the way, Subway offers gluten free buns and their staff seem to be well-trained in avoiding cross contamination. Fortunately, there is much more awareness about gluten-related health conditions in the food industry today than there was 20 years ago when I was first diagnosed. But you can't take anything for granted. You must be assertive and make the effort to communicate your needs with restaurant staff. And you need to get over being embarrassed to do so when eating out with friends and extended family. Sorry, I just needed to be direct there.

It is usually the case that celiacs feel better when lowering gluten consumption even when they don't completely eliminate it. At least at first but as they loose their tolerance to it that often changes and they experience relapse. But you need to realize that celiac disease is not just about a tummy ache, it's about real damage being done to the lining of your daughter's small bowel. The inflammation damages the "villi" that line the small bowel and compromise the absorption of nutrients from the food she eats. This is not a food allergy. It is an autoimmune disease whose inflammatory process damagers her body. Autoimmune diseases are those where the body attacks its own tissues. Frequent, even minor, exposure to gluten will create setbacks in healing. Please don't allow yourselves to fall into the mindset of, "Oh, just a little gluten here and there can't hurt much." If her parents don't take this seriously then your daughter won't either and will grow up being very inconsistent with the gluten free diet.

[trents]

By the way, the Imaware celiac home test kit does not require a blood draw, just a finger prick.

[trents]

But keep in mind that any kind of testing, whether it be serum antibody testing or an endoscopy with biopsy, would require your daughter to have been eating regular amounts of gluten for weeks (6-8 weeks for the antibody test and 2 weeks for the biopsy) in order to yield valid results. So, if she is eating gluten free she would need to go back to eating gluten daily for that period of time leading up to the testing. And until there is testing done you won't know if she has celica disease or NCGS (Non Celiac Gluten Sensitivity). NCGS does not damage the lining of the bowel but produces many of the same symptoms as celiac disease and is 10x more common. Some experts believe NCGS may be a precursor to developing celiac disease.

[FunShine]

Thanks for all the input!  I’m going to ask my doctor to test me tomorrow, I feel that there is a decent chance given my history of autoimmune diseases that I could have it.  I didn’t know that it could cause some of the random issues that I’ve dealt with, numb toes, sore joints, mouth sores.  I read that having Hashimotos, IGAN, psoriasis, and geographic tongue are all associated with celiacs.  I have an appointment with my daughters pediatrician next week about the tics, but I felt pretty brushed off when I took her in for the stomach aches, so if they don’t want to test her I’ll look into the home test and perhaps a new doctor.  She’s an only child, so maybe I’m being a hypochondriac about her, but it seemed weird to me that she seemed in equal pain with one of her stomach aches as she was when she broke her arm, she was begging me to take her to the hospital.  Most of the time her stomach aches don’t seem that bad, but she complains of them several times a week and she told the doctor she gets them almost everyday but doesn’t always tell me about them.  She hasn’t had a stomach ache in the few days that she didn’t eat gluten.  I think I’m going to let her have gluten tonight and see if she gets a stomach ache.  My guess is that if it is celiacs, at her age it will be important to have a proper diagnosis to have the school take it seriously so she will need to be eating gluten to get the test and diagnosis.  Although it hurts me to think I am giving her something that is damaging her while we wait to get in for an appointment.  Or maybe I’m completely wrong and she just needs to eat more fruits and veggies like the doctor said 🤦‍♀️
I broke it to my husband that if she does have celiacs we’re going to have a gluten free kitchen in our house!

[trents]

Don't forget the possibility of NCGS for which there are no tests. Celiac disease must first be ruled out to conclude NCGS when the symptoms are common to both.

[FunShine]

Yes, I think regardless of the celiac diagnosis we’ll give gluten free a shot following the tests.  I was reading that a lot of people with psoriasis and Hashimoto's feel much better without gluten so worth a shot for me to see if it makes a difference.  And if she’s not having stomach aches while off gluten, I want her to feel her best!  With NCGS is cross contamination less of a factor?  So my husband could still have gluten in the kitchen and she and I could be gluten free (or at least mostly gluten free except any cross contamination)?

[trents]

With NCGS, cross contamination can be less of a factor but not necessarily. Individuals vary greatly in their sensitivity. It's certainly not something to bank on and I would always say it is better to be safe than sorry, even with NCGS.

[knitty kitty]

@FunShine,

Celiac Disease damages the small intestine where vitamins and minerals are absorbed.  This leads to malnutrition and vitamin and mineral deficiencies.  It's rare to have a deficiency in just one vitamin or mineral.  There's usually deficiencies across the board.  

One of the first vitamins to become deficient is Thiamine Vitamin B1 because it cannot be stored for longer than three weeks.  We can become deficient in thiamine in as little as nine days.  Every cell in our bodies needs thiamine to provide energy so the cell can function properly.  

Tics can be caused by Thiamine deficiency.  Tics can also be caused by an antibody to gluten called tTg 6.  Blood tests for tTg 2 are tested for in Celiac Disease.  tTg 6 antibodies are associated with gluten ataxia and Celiac, Alzheimer's, and Parkinson's diseases.  

Thiamine deficiency is also associated with thyroid disorders like Hashimoto's.  

Like I said, other vitamin deficiencies can contribute to symptoms.  Vitamin B12 deficiency can contribute to geographic tongue as well as tics.  Vitamin B6 Pyridoxine deficiency can contribute to tics and ataxia.

 

https://www.livestrong.com/article/149742-vitamin-deficiencies-that-cause-motor-tics/

And...

https://www.verywellhealth.com/hashimotos-disease-fatigue-thiamine-levels-3232754

And...

https://thyroidpharmacist.com/articles/thiamine-and-thyroid-fatigue/

 

Genetic testing for the most common Celiac genes can be done with a saliva test or a blood test.  Some doctors will make a diagnosis of Celiac Disease based on positive genes for Celiac and improvement on a gluten free diet.  

Do talk to your doctor about supplementing vitamins and minerals while healing.  And get a referral to a nutritionist.  

Hope this helps! 

[DebJ14]

On 7/10/2022 at 1:22 AM, trents said:

 

Studies have shown that eating out is the number one sabotaging activity of of the gluten free effort. Some suggestions I have would be to choose Mexican eateries since most of their food uses corn instead of wheat.

You need to be careful at Mexican restaurants and ask lots of questions.  Our son just found out last week that their favorite Mexican restaurant is now using regular soy sauce to marinate the fajitas.  They got a new chef and he changed the recipe.

The waiter brought out the Chef who agreed to clean the grill and cook them non-marinated filet mignons and slice them for fajitas.  It was more expensive, but so worth the entire family not feeling sick afterward.  My son, daughter in law and grandsons all have Celiac disease.  After being gluten-free since 2007, they have very severe reactions to being glutened.

[Suzisqueue]

On 7/6/2022 at 11:32 PM, FunShine said:

My young daughter recently started complaining about stomach aches on a fairly regular basis, I took her to her doctor and was told to have her eat more fruits and veggies.  My mom never got tested, but also had severe stomach aches and eventually went gluten free and says she feels much better.  Along with the stomach aches my daughter recently started a tic where she sort of throws her head back involuntarily.  I googled “stomach ache and tics” and saw an article that said gluten could be the cause.  Wondering if this is something that anyone else has experienced?  I have a history of autoimmune diseases (Hashimotos, geographic tongue, psoriasis) and was thinking of asking my doctor to test me as well to see if celiacs could account for my recurrent canker sores and awful fatigue.  I’m wondering if it’s possible that celiacs runs in the family, but wasn’t ever diagnosed.

I'm so sorry your daughter is having such problems. My daughter went through a period of having tics, I was afraid she had Tourettes - but it did pass! So give it awhile, hopefully it will go away. I'd avoid any psychiatric medication for children and try diet modification and perhaps nutritional supplementation. Food is medicine. Don't let any doctor put her on Neuroleptic medication (that's anti-psychotics). That's their go to, catch basket, for anything psych anymore. It's horrible! 

Sounds like you meet many of the precursors of Celiacs - consider as well many have terrible reactions to gluten in absence of Celiecs. (They've done awful things with GMO's and grain, affects many people, food is changing faster than our evolutionary adaptation). Our American food is terrible for people, make everything from scratch.

The mouth sore thing is concerning. It is related to bad gut flora and Herpes 1. But, it can be related to more serious health problems. : (

Sound like you maybe really worn down (see a psych if needed if that's the case to minimize stress if a med will help). I'd suggest (and this is just me) that you work on your diet, maybe do the FODMAP (there's a great little app for that). Find the foods you react too and eliminate them from your diet. Try Manuka honey and hold it in your mouth for awhile, put it in your tea, or coffee too, then chew Mastic Gum (it's a tree sap that comes in little chunks and you chew it). It has anti microbial and anti-viral properties. Also, take good care of your teeth, water pik with bit of Listerine, brush and floss. Gotta keep up on that because a lot of us end up with gum disease. Very expensive to get implants.

Think if you can figure out diet that helps you, and both you and your daughter are eating the same clean food it will have a big impact for the both of you. Takes a few months before you really see an improvement but so worth it! In the end, all of this is about the 'bugs in your guts'. We have to love and take care of the good microflora - it's the whole deal!

Hope my big rattle might be helpful.

Big Hugs!! ; )
Sue