3 year old gluten intolerance?

[Nicbent35]

Hi, I have a 3 1/2 year old daughter..I would say she has had tantrums since even before she was a year old. Challenging but not extreme. Lately, her behavior had gotten extreme. Just so angry, yelling mean hateful things, completely defiant, was causing a lot of disruption in our house, I felt like I had lost the little girl I knew, we were baffled.
 

Something just didn’t seem right to me, I have been researching and read about how gluten can sometimes affect kids behavior. I took her off gluten a week ago tomorrow. The next couple days after I took her off gluten the days were much easier. About 4 days in she had one of the worst days I’ve seen her have tho. I kept on with it tho and the past two days she has been angelic. Is this common that if it is gluten that she could still have a bad day like that a few days after taking her off of it? Should I try to reintroduce it at some point to see if it’s really a gluten intolerance?

I’m not gonna lie, if she continues with the great behavior she’s had the past couple days I will probably be scared to reintroduce it but don’t want her to have to avoid gluten if it’s not necessary. Anyone have advice? 

[trents]

Welcome to the forum, @Nicbent35!

There is something called gluten withdrawal that might have come into play here as well. As strange as it might sound, gluten has some addictive properties similar to opiates and some people feel physically and emotionally out of sorts for a few weeks after it is removed from their diet.

There are two recognized gluten disorders, celiac disease (aka, "gluten intolerance") and Non Celiac Gluten Sensitivity (aka, NCGS or just "gluten sensitivity" for short). They have symptoms that overlap. The difference is that celiac disease is an autoimmune condition that causes inflammation in the small bowel lining and, over time, damages the lining of the small bowel. There are specialized blood antibody tests that have been developed for diagnosing celiac disease. NCGS, on the other hand, does not damage the lining of the small bowel. No tests are yet available for NCGS. Celiac disease must first be ruled out in order to arrive at a diagnosis of NCGS but NCGS is 10x more common than celiac disease.

Please be aware that if your daughter is on a gluten free diet, the celiac disease blood antibody tests will not give valid results. For the testing to be valid, she would need to have been eating normal amounts of gluten for weeks/months leading up to the day of the blood draw. If you remove gluten from her diet as an experiment, valid testing can be done later on but she would need to be restarted on gluten for weeks/months ahead of the blood draw. Also be aware that once on a gluten free diet, restarting gluten can produce more severe symptoms because all tolerance may have been lost.

[Nicbent35]

Thank you for all that helpful info, does that mean it’s not a good idea to do what I’m doing? Or since it’s only been a week should I see if I could get her tested now? Would it show up still since it hasn’t been long if they tested her?

[Wheatwacked]

Hi @Nicbent35,

     

2 hours ago, Nicbent35 said:

don’t want her to have to avoid gluten if it’s not necessary.

      When my son was diagnosed with Celiac Disease when he was weaned, so I understand your frustration.

      With improvement so dramatic, it cannot be a coincedence.

Get her to the doctor and tell the story and insist on testing.  In the meantime, though, continue on GFD.  Her health is more important than convincing a doctor.  Bring videos of her behaviors if you can.  Even if the blood tests and biopsy prove negative, that is part of the diagnosis process for NCGS and later when she is recovered you can always do a Gluten Challenge.

     This is an important time in her developement.  Celiac Disease causes malabsorption syndrome, leading to malnutrition, regardles of what she eats.  Though NCGS may not cause malabsorption, it will affect food choices which can lead to malnutrition.  There may be benifits that an official diagnosis may have, but they don't trump a healthy child.

     Get her healthy, then worry about validation later.  Celiac Disease is difficult to diagnosed, especially in children, because doctors look for antibodies in the blood and young children have immature immune systems.  Also you don't mention any gastrologic symtoms and celiac disease is traditionally considered gastrolic only.  Not true.  There are over 200 symptom that celiac disease and the accompaning malnutrion mimics or causes that often causes misdiagnosis and delay in recovery.

While at the doctors, ask them about vitamin D deficiency and Iodine deficiency in particular. Milk being the primary source of iodine in the diet, but concerns exist regarding the lower iodine content in organic milk and reduced milk consumption in certain demographics.  Vitamin D deficiency is 40% of the industrialized population and a recent study in the Great Britain showed a wopping 60%, beaten only by some areas of Canada at 70%. And B1, B2, B3, B5 and B6.  Deficiencies in these are common in untreated Celiac Disease and they affect energy production.

Quote

Thus, regardless of study design, iodine deficiency had a substantial impact on mental development.  Iodine and Mental Development of Children 5 Years Old and Under

Are You Confused About Your Celiac Disease Lab Results?

[Wheatwacked]

If you mean continueing on Gluten Free my answer is yes.  She showed significant improvement in her behavior and that translates to a happy family.  Do get her tested as sooon as you can.  You might want to investigate genetic testing for Celiac Disease.  Children recover more quickly than adults.  It took my son about 6 months on Nutramigen before going to regular food, gluten free.  Blood tests are not always accurate in very young children. You may be advised to see a gastroenterologist instead of relying on blood tests results.

Logic: She is better off gluten than before.  Wheat flour has no nutritional value and has an omega 6: omega 3 ratio of 22:1.  Our bodies do better at 3:1.  Omega 6 causes inflammation.

When my son was diagnosed, back in 1976, his doctor recommended my wife and I also go gluten free.  We declined and lived to regret it.  I started GFD at 63 and have spent the last 10 years undoing the damage, some of my symptons went all the way back to my childhood and things I lived with all my life got better.

Edited February 15, 2025 by Wheatwacked

[Nicbent35]

Well I had a moment yesterday morning where I accidentally gave her gluten. She wanted what I was eating and I forgot and let her have a few bites of toast. It was a really bad night last night with her behavior. Will a few bites of bread influence their behavior that much or could it just be a coincidence?

[trents]

@Nicbent35, are there any other symptoms besides altered mood when your daughter gets "glutened"? Behavior like that in children often belies physical discomfort of some kind. Does she complain of stomach aches? Is she constipated?

[Nicbent35]

She has had problems with constipation, they actually prescribed miralax for her but I have changed some other things about her diet that seemed to have helped, so I never gave it to her..but she still doesn’t always go daily 

[Wheatwacked]

10 hours ago, Nicbent35 said:

Will a few bites of bread influence their behavior that much

Yes.  Proportionately a small piece to a toddler is like a whole slice to an adult.  This is an important clue.  She was doing well, accidentally ate gluten and later the old behavior returned.

I remember reading posts here of people reacting to a kiss from someone who had just eaten gluten.

Recent research indicates that 40% of first degree relatives of someone with Celiac have undiagnosed Celiac Disease.  Father, mother, siblings.  There is a whole list of symtoms of "silent celiac". 

Here is an article of symptoms possibly mistaken for other causes than Celiac Disease.  When I finally stopped gluten at 63 years old, I counted 19 things that improved, including lifelong mouthbreathing.  I never smelled bad things, so I as a kid, I learned to respond to the other kid's response in order to not seem weird.

I really recommend you pursue testing for all the family if you can, and the whole family following GFD.  It is difficult at first, but the benefits will be worth it.

 

[MommaBear82]

21 hours ago, Nicbent35 said:

Well I had a moment yesterday morning where I accidentally gave her gluten. She wanted what I was eating and I forgot and let her have a few bites of toast. It was a really bad night last night with her behavior. Will a few bites of bread influence their behavior that much or could it just be a coincidence?

Yes, it certainly can! My daughter has a reaction from just playing with Playdough. She doesn't get GI symptoms at first, just psychological mostly. It can get really bad. It's like night/day behavior. My daughter is eight, but started showing signs around 6.

[Wheatwacked]

According to research, consuming gluten can potentially trigger sudden mood swings and increased irritability in children, particularly those with gluten sensitivity or celiac disease, making them more likely to have tantrums or display behavioral issues; this is because gluten can trigger an immune response in the body, potentially impacting brain function and neurotransmitter levels. 

When my son was diagnosed in 1976 when he was weaned his doctor told us that at 5 years old his kindergarden teacher would beg us to put him on Ritalin.  And so it did happen.  My son was on Ritalin though high school.  In the morning he was a devil who could not put on his socks. Half an hour after the morning dose he was an angel wanting to help mom get ready.  Talk about Jekyll and Hyde!

Dr Danel Amen could be a good resource for you. 

Quote

TREATING ADHD IN TODDLERS AND PRESCHOOLERS

An elimination diet that removes sugar, gluten, dairy, corn, soy, and artificial dyes and sweeteners from the diet (to rule out potential allergies)

 

Edited February 18, 2025 by Wheatwacked

[Nicbent35]

3 hours ago, MommaBear82 said:

Yes, it certainly can! My daughter has a reaction from just playing with Playdough. She doesn't get GI symptoms at first, just psychological mostly. It can get really bad. It's like night/day behavior. My daughter is eight, but started showing signs around 6.

Wow she was just playing with play dough yesterday and I actually thought i wonder if I have to worry about play dough! But no meltdowns yesterday. Is your daughter celiac or just gluten sensitive/intolerant?

3 hours ago, Wheatwacked said:

According to research, consuming gluten can potentially trigger sudden mood swings and increased irritability in children, particularly those with gluten sensitivity or celiac disease, making them more likely to have tantrums or display behavioral issues; this is because gluten can trigger an immune response in the body, potentially impacting brain function and neurotransmitter levels. 

When my son was diagnosed in 1976 when he was weaned his doctor told us that at 5 years old his kindergarden teacher would beg us to put him on Ritalin.  And so it did happen.  My son was on Ritalin though high school.  In the morning he was a devil who could not put on his socks. Half an hour after the morning dose he was an angel wanting to help mom get ready.  Talk about Jekyll and Hyde!

Dr Danel Amen could be a good resource for you. 

 

Your son still had to go on Ritalin after going gluten free?

[Wheatwacked]

     My mom said when he was born "you got what you gave".  Until 5 years of he was gluten free, was well liked by his friends, although did get them into mischief at times, a leader of his group of friends, physically active and paid attention, as much as any preschooler.

     At 5 years old we moved to my hometown and had to rely on our friends, my pediatrition (still the best doctor I ever had), my wife was a nurse so her aquaintences and doctor friends.  They all still believed back in 1980's that Celiac was a growing phase, and he wanted to be like everyone else.  So everyone's opinion was that if he tolerates gluten with no symptoms he had outgrown it.  He passed the summer at the beach (lots of vitamin D) was a prodegy swimmer and the whole team liked him and he fit in well.

    Fall came, he started kindergarden school, less sun ( low vitamin D, Seasonal Affective Disorder is real), new people and a morning schedule that did not end up in a fun, active day at the beach.  Getting him going got more difficult.  By the first teacher-parent meeting in December, they brought up the subject.  He was disruptive in class.  By then we had forgotten what his doctor said 5 years earlier.  So he was diagnosed as ADHD.

     Competitive swimming was his saving grace.  All though High School he continued to swim with his competetive team most days after or before school and with the beach club team in addition in the summer.  Some records he set lasted years.  After high school he became a professional ocean guard. Now getting close to retirement.  But always had difficulty concentrating on schoolwork.

     He, and his wife, incidentally, is now having the health problems that I just have just gotten rid of.  I had forgotten what the doctor said to us 60 years earlier, bout Celiac Disease being hereditory.  He is starting to listen, but still in denial.  Loves his pizza.  At 63 I had arthritis, fibromyalgia, sleep apnea, enlarged prostate, alcoholism and I got dumber as the years passed.  They all are gone with gluten free and vitamin replenishment. My wife had allergies, endometriosis, fertility problems and miscarriages.  She passed 18 years ago.

Sorry for the long story.  Reminds me of a Joni Mitchell song.  "L've looked at life from both sides now. From win and lose, but still somehow, it's life's illusions I recall. I really don't know life, at all"  

Edited February 18, 2025 by Wheatwacked

[Viroval]

On 2/15/2025 at 5:29 AM, trents said:

Welcome to the forum, @Nicbent35!

There is something called gluten withdrawal that might have come into play here as well. As strange as it might sound, gluten has some addictive properties similar to opiates and some people feel physically and emotionally out of sorts for a few weeks after it is removed from their diet.

There are two recognized gluten disorders, celiac disease (aka, "gluten intolerance") and Non Celiac Gluten Sensitivity (aka, NCGS or just "gluten sensitivity" for short). They have symptoms that overlap. The difference is that celiac disease is an autoimmune condition that causes inflammation in the small bowel lining and, over time, damages the lining of the small bowel. There are specialized blood antibody tests that have been developed for diagnosing celiac disease. NCGS, on the other hand, does not damage the lining of the small bowel. No tests are yet available for NCGS. Celiac disease must first be ruled out in order to arrive at a diagnosis of NCGS but NCGS is 10x more common than celiac disease.

Please be aware that if your daughter is on a gluten free diet, the celiac disease blood antibody tests will not give valid results. For the testing to be valid, she would need to have been eating normal amounts of gluten for weeks/months leading up to the day of the blood draw. If you remove gluten from her diet as an experiment, valid testing can be done later on but she would need to be restarted on gluten for weeks/months ahead of the blood draw. Also be aware that once on a gluten free diet, restarting gluten can produce more severe symptoms because all tolerance may have been lost.

As you mentioned, it’s also important to recognize how varied each person’s experience can be with gluten-related issues. The process of figuring out gluten sensitivity or celiac disease can be overwhelming, especially when symptoms are unclear. Keeping a detailed record of symptoms might help, and organizing this information clearly can be quite a task. If you’re ever looking to document the process in a more structured way, whether for a personal health blog, a medical article, or even sharing your findings with others, a professional writing service could be really helpful. You can check out services like this one https://ca.edubirdie.com/ that specialize in organizing and presenting complex topics in a clear and concise manner, making it easier for others to follow and understand the experience.

It's crucial to stay in touch with a healthcare professional, and documenting everything you go through can be an essential part of understanding your or your child's health journey.

Thanks for sharing this detailed explanation. It’s really helpful to understand the differences between celiac disease and gluten sensitivity. I had no idea that gluten withdrawal could feel similar to addiction, and it’s great to have that context when considering how it affects people. It’s also good to know how important it is to continue eating gluten for accurate testing. I’ll keep all of this in mind!