Staring spell with one pupil dialating

[Hollye]

G'day all,

Living in Australia, I have two children age 2 and 4 that have been diagnosed with gluten intolerance ( initially presumed  celiac before all the test which came back negative a year ago)  due to a failure to thrive in the 2 year old at 7 months and severe constipation and staring spells which is very likely silent seizures only during dmealntimes in my now 4 year old. 

My question, do any parents have gluten intolerant or celiac children that appear to be having silent seizures or having staring spells where one pupil dilates during meal times?

My 4 year old went through many test to determine why her pupils were doing thus and all the test came back good, ( no brain tumour, etc.) our Neurologist discovered our youngest had severe gluten issues so he told us to restrict gluten from our 4 year olds diet. When we did, we realised her constipation cleared and her pupil stopped dialating about 90% of the time during meals.  She still has these issues but we think being tired possibly also triggers it.  Our neurologist says he would treat her with meds if these spells interfered with her safety or learning but otherwise he doesn't want to diagnose her officially due to long term effects in her life with the label, however, he is quite convinced this is due to gluten. I'm worried that I'm forcing her to be gluten-free like myself and her sister if she truly isn't gluten sensitive.

I'm really curious if gluten can cause this? And if any parent has experienced this?

Also, what age should I consider retesting? 

Thanks for your help!

Hollye 

[ravenwoodglass]

Welcome. You have a great neurologist. Please continue to follow his advice, forever. He can write the needed letter to keep her and your youngest safe in school or daycare.  With neurological impact personally I would not even think of doing a challenge later.  I had severe neuro issues that began around her age and wasn't diagnosed till middle age. While the effects can be subtle for a long time they can impact mood and learning as well as the ability to walk and more. At her age any impact can likely be reversed, you have seen that with the decrease in the absence seizures. Do read the Newbie 101 thread at the top of the coping section and make sure to test all first degree relatives even if they seem to be symptom free.

[GFinDC]

Hi Hollye,

Testing requires 12 weeks of eating gluten for the blood antibodies test, and 2 weeks for the endoscopy.  That's called a gluten challenge.  Getting tested later would require her to do that gluten challenge, which could be very unpleasant for her if she does have celiac disease or NCGS (non celiac gluten intolerance).

Gluten ataxia is a condition that some people with celiac disease get.  Gluten ataxia affects the brain and can cause difficulty walking and coordinating muscles, and possibly many other symptoms as Ravenwood said.  Gluten ataxia could explain what is happening to your daughter.  The effects should be reversible with a gluten free diet.  But recovery can take months or years, depending on the individual immune system and their ability to stay completely gluten-free.

The treatment for NCGS and celiac disease is the same, following a strict gluten-free diet for life.  There are probably about 6% to 10% of the population that have NCGS, while only about 1% have celiac disease.  There are no test for NCGS yet.  But someone who has symptoms relief from going on the gluten-free diet, but tests negative on the celiac disease tests, may be NCGS.

[Hollye]

Hi GfinDc and Ravenswood,

Thanks so much for for your support! I just feel guilty because my mother in law constantly gives me a hard time. She doesn't believe gluten is doing this and just thinks the weird dialation with spells are harmless even when all the issues ( yellow poos, big belly, constipation and u digested food, etc ) subside or decrease when she's not eating gluten! It's just a constant battle that I'm pretty dam tired of!

I know that my children have a gluten issue but because the typical testing came back negative, I have to defend this.

 I know that my youngest just wouldn't eat the gluten products at 17 months during her challenge and for some reason my then 3 year olds test came back neg except that it showed reflux which she's had since she was a baby when I was still eating gluten and breastfeeding. It took the eye issue with staring spell for her to be diagnosed with gluten sensitivity. In fact our pedi neurologist knows and respects our pedi gastroenterologist but flat out disagrees with him. 

Last question, can a lollipop made with wheat glucose contaminate them? They are getting yellow poos and constipation again! Not sure where the contamination is??

 

Thanks again again so much!

[ravenwoodglass]

It isn't unusual for very young children to have false negatives with testing from what I understand. In addition some doctors only run one or two tests out of a panel. Can you get copies of all tests? That might be a good idea as some doctors will call a low positive a negative or miss changes in the intestines that are not full villi destruction.

Although wheat glucose may be considered by some to be so processed that it would be gluten free I wouldn't touch it. There are lots of candies and lollies that would be safe for sure you should go with those instead.

You might want to get ahold of the neuro and see if he will 'write a script' for you to show to folks that doubt that your children need to be gluten free. You could also consider telling a 'white lie' and saying you had them retested and this time the tests were positive.  Whatever you need to do to keep the children safe from folks that think 'oh one cookie won't hurt'.

[Hollye]

Hi, thanks again Ravenwood.

I am not  a huge fan of lollies, etc and my kids get minimal but they were given a lollipop without my agreement when they were with the MIL. Not to blame her because I gave then a couple small ones that are gluten-free to help with potty training ☺️ 

Luckily my neuro has given us the paperwork because the traditional tests came back neg but it's been such a long journey with lack of support from in laws that I question if I'm doing the correct thing everyday!  Also I do not trust that they feed us 100% gluten-free because her meal time episodes flare up when we eat at their house!!

Fortunately my husband is very supportive and so is my family but they are in the USA and not here.

we are moving to Switzerland in a few weeks and I feel that I can now 100% control our diet. I plan on telling her school that she is diagnosed gluten-free as you say to avoid contamination. I can never forgive myself if she does indeed have Ataxia.

As far as the test, We all carry two positive markers for the celiac disease. Her endoscopy came back as reflux only but she was only on gluten for 8 weeks after a few months being off of it.

As far as the blood test, I do not know if it was a low positive? I'm assuming that there was no reading but I will try and find her paperwork.

thanks again for your insight and support. I wish more people would recognise that this isn't some dieting trend as my MIL thinks. In fact, my youngest gained weight and began to grow again and my other daughter is rarely to never sick anymore as she was plagued with hives and severe and constant sinus infections. The neuro could not believe how severe her sinus was when he viewed her mri. ( after the neg endoscopy I put her back on gluten) 

 

 

 

 

 

[Ella07]

Hi Hollye,

I have a similar problem with my eyes as your child. (I do have Celiac disease.) When I've been glutened, one eye dilates noticeably more than the other and lasts several days.  I do not get staring spells with it though.

My eye doctor had me go to an eye doctor who specializes in the neurology of the eye.  He said I had autonomic nerve damage that caused the dilation problem and the autonomic nerve damage was from my body's reaction to gluten. The doctor said that it will not affect my sight but the difference in dilation may become more pronounced over time and your eye will be more sensitive to sunlight, so sunglasses is obviously more necessary for me when outside on a sunny day. 

I have many other symptoms when glutened that are also from my body attacking the autonomic nerve.  It might be helpful to research the symptoms of damage to the autonomic nerve to see if any others fit with your daughter's symptom list.  Damage to that nerve is not something to play around with (and I don't think you would but might be helpful for your mother in law to realize).  

I have dealt with a couple family members who thought gluten could not be doing this to me and not taking gluten seriously, but they have since completely turned their opinions around when the medical evidence was shown and now they support me adamantly. 

Hope that helps! 

[Hollye]

Hi Ella,

thanks so so much for your email. I am very sorry to hear that you suffer from autonomic neuropathy. You,  sounds like my daughter.  She has very extreme sensitivity to light! I even brought her to an eye doctor when she was 18 months because whenever I laid her on the change table, she would cry that the normal light above, hurt her eyes!!  At this point her eyes did not dialate yet...and yes she has very good eyesight.

she also seems to have difficulty swallowing...she nearly always coughs when drinking and chokes 90% of the time when she eats! ( surprisingly not dessert! ?  She will hold certain meat in her mouth and chew it for ages and refuse to swallow it because she says its chokey. She also drools a lot but doesn't realise and I've always thought it seems she has trouble with her speech because it's as if she can't form her lips properly...

The poor darl, I'm  painting her as below average intelligence here when in fact she's actually gifted.

Did you experience any of the food chewing issues or even drool? Also, do you know if one can have gluten issues without the intestines being effected?

Also, what age did you find out that were a celiac and how does the doctor know that your eye is indeed affected by gluten? This is where our problem lies...being able to link her eye issue directly to the gluten that she is not testing positive for...

 

 

[Ella07]

Hi Hollye,

I'm sorry that you and your child, who is so young, are going through this.  With you being on top of things as best as you can, maybe before long healing can come.

I have not experienced the food chewing issues or drooling.  There are so many different gluten symptoms and it seems no one reacts the exact same as another.  But, for sure, there are similar symptoms in common with others.  My case is rare and I have been a "complicated" case for the two doctors working with me.

I was diagnosed as Celiac just within the last three years (...in my forties).  It's been a process because my symptoms are not typical (rare for gluten to attack the autonomic nerve like my situation).

With my gathered symptoms when on gluten or now whenever glutened by accident, my doctors could clearly see that gluten was attacking my autonomic nerve.  The symptoms only came on when exposed to gluten.  My eye dilation situation was just one more proof.  I also have malabsorption which has caused very low iron and low protein in my blood.  But I am healing slowly and slowly my iron and protein numbers are increasing.  So, thankfully, being steadfast in your efforts to protect your child from any gluten whatsoever, will probably bring healing.  

You asked about gluten issues and intestines being affected...  My doctor just told me this week that gluten does not normally ever cause malabsorption (like my iron and protein low levels from the intestines being affected) unless it is Celiac.  But that there is gluten intolerance in people but they won't have malabsorption issues or intestinal damage.  He was also talking about how the tests (blood and endoscopy) that show Celiac only show it if on gluten for a defined amount of time before the tests are done.  Just my personal opinion here...I'd have a hard time putting my child back on gluten and cause the symptoms, just to get a result.  If their symptoms were light ones, maybe, but not if it caused distress and/or damage to my child.  I think having the solution (going gluten free) is more important than having a test result.

My story is too long to lay out the whole thing but my symptoms picked up as the years rolled on.  For five years before I was diagnosed as Celiac, I was having symptoms just every month or so.  The symptoms were just that my bowel movements changed, from no issues to constipation (I hate these details but if it helps you or someone...) literally overnight.  That, along with intense spells of near fainting every month or two, was how my symptoms were for the next five years. Then in 2014, the fainting spells increased swiftly in a matter of weeks to daily and then several times every day and night.  Along with new symptoms (the autonomic nerve controls everything automatic in our bodies, like blood pressure, your heart, temperature regulation, digestion, bladder, your eyes focusing and dilating, stomach churning as it should, and more)   that ended up to all being a result of my body attacking my autonomic nerve when triggered by gluten.  All that to say, for five years I had just a couple symptoms of autonomic damage (which I didn't realize then as autonomic damage) with no other issues pointing to intestinal damage or anything else. Those issues showed up 5, 6,  and 7 years later.  So, you can have gluten problems that are from Celiac that do not show in outward symptoms that point to intestinal damage long before intestinal damage symptoms become obvious (like malabsorption).  

One other note that might help you to know, I had to get off all grains (wheat, corn, rice, etc.) before my symptoms subsided.  I only eat food that I make from scratch myself...my doctors say my body is very sensitive to gluten and that has to be the way I live.  Yes, it is a lot of work but the benefits of healing and feeling good is so very worth it.  It has become a way of life for me (almost 3 years now) and, in turn, becomes easier.  The easy days of eating food become a lesser memory...a good thing.

Hope I answered your questions!  Let me know if I can help you further.

I have to commend you heartily for fighting hard for your child's health.  Blessings to you!