When my son Henry and his twin brother were 14 months old, the tantrums began. It was a little sooner than average, but I assumed this was due to having three boys ages three and under. Less Mommy to go around! Henry is an emotional little boy. When he was born, he screamed the loudest scream the hospital had ever heard. When he is angry, the neighbors knew about it! On the other hand, he is incredibly sweet and kind. If someone cries, he cries with them. If someone is hurt, he is there to comfort. He adores cats, dogs, babies, baby dolls and stuffed animals. He even tucks his animals in at night with a kiss and a sip of water. His sweetness and spirit truly make him one in a million. When his tantrums began to escalate, I assumed it was just because he was my emotional child, my empath.
However, as time went on, it was clear to me that the tantrums were abnormal. They were violent, and he was constantly agitated. While a “normal” tantrum shouldn’t last longer than 20 minutes, Henry’s could easily top two hours. We would have three of these many days. Yes, that is six hours of screaming. My Google research had me convinced that he had permanent psychological issues, bipolar, even schizophrenia. Nothing could stop the screaming. Nothing. It was very clear to me that he had no control over what was happening in his body. I would ask him why he was so upset. He would sob with his head in his hands and say “I don’t know.” I believed him. He really didn’t know.
I brought up the tantrums at a well-check with his pediatrician. She stared at me blankly and shrugged it off as him just being a toddler. I pushed for a vitamin deficiency test, because I knew that deficiencies could cause this. She talked me out of it, because he appeared to be healthy. I knew deep down that she was wrong. Sadly, my pediatrician was going to be useless to me in this situation.
Leaving our house became nearly impossible. Our family’s quality of life was plummeting because we had to endure hours of screaming, toys flying through the air, biting, hitting, dangerous attacks on his brothers, and pictures being knocked off the wall. My husband and I were both punched in the face a few times. I referred to these as his “episodes.” They were psychotic. I felt like I was dealing with a mental patient. Although impossible, he needed to be restrained for his own protection sometimes. I would cry in desperation. Not because of the war zone that I lived in. I cried because something was wrong with my child, and I couldn’t fix it. He needed tests, but which tests?I researched every possible mental disturbance that could cause violent tantrums, but nothing quite fit. His normal personality (which I did still see the much of the time) was very laid back. He was developing normally. He had a strong immune system and no other health issues. I was just doing my best to weather the storm and continued to research. All I had was my mother’s intuition telling me that something was wrong and he needed me to help.
At long last, I had a clue and I started to unravel the mystery. Although I only medicate my children when completely necessary, I would give him ibuprofen when a tantrum was extreme. I began to notice that within 10 – 15 minutes of giving him the medicine, he would snap out of it completely. A light bulb went off in my head. Something was causing him pain or inflammation. I had no doubt in my mind.
My first thought was gluten. Around this time, I read a mother’s blog who had the same issue with her little girl. She removed gluten and got her happy child back. I started researching this and found this same story from other parents. I cleared the pantry of all gluten as an experiment. Within 48 hours, we saw a positive change in him. Within two weeks, things were 90% better. I will never forget when his swim teacher asked me “Who is this new child?!”
While he was 90% better, that wasn’t good enough. The tantrums were much less frequent, but there were still some “episodes” that weren’t normal. Since his reaction to gluten was so strong, I suspected celiac disease instead of gluten intolerance. I asked his pediatrician to test, and she did. Negative. I was shocked by the result, but I accepted it. However, I was still in search of why he had the fits of rage. I reintroduced gluten in small amounts, and the result was always horrendous tantrums. I should never have even tried it, but I still had my doubts that gluten could cause such an extreme reaction. It was hard to believe!
A friend recommended that I see a local doctor who specialized in nutrition. He told me that the test the pediatrician gave Henry would not be reliable since he was already gluten free. He instead recommended a genetic test because he also suspected celiac. To have celiac, you need specific genes. Gluten is the trigger for this autoimmune disease. The results of this test showed he had the two main genes for celiac (his brothers do, too). This puts them at a 16 times higher risk than the general population. That combined with his symptoms landed him a celiac diagnosis. To cover all bases, I saw a second integrative doctor who confirmed the diagnosis. My little boy was indeed a celiac.
The nutritionist also encouraged me to do an allergy test at Any Lab Test Now (this is a national chain) though Meridian Valley Labs. This was a superior test to what an allergist would give him, as it tested for both IgE and IgG4 allergic reactions. It would test for reactions to 180 foods. I was doubtful. Food allergies? I was uneducated about allergies. He had never had hives or breathing problems. I had no idea that allergies and intolerances could present themselves in other ways. In addition to immediate food reactions, there are delayed food reactions. They can occur several days after eating a food, making pinning down the culprit nearly impossible by observation alone. These reactions can affect any part of the body and can lead to chronic problems including mental disorders, joint pain, rashes, headaches and more. As I waited for the results of this test, I kept a food journal and became suspicious of many foods including eggs, dairy, and soy.
When the results came back, I was shocked. 17 food allergies and intolerances including beef, eggs, casein/dairy, chili powder and garlic (highest!). There is a theory that when you have celiac (and the leaky gut that accompanies it), food particles enter the bloodstream, and your body makes antibodies to fight these “invaders.” My nutritionist told me to remove these foods for three months and then reintroduce them one at a time to look for reactions. While it’s true that we may have some false positives on the test, I have observed strong reactions to garlic and beef in particular, and these reactions last for days!
I removed these foods about a month ago. It has certainly been a difficult lifestyle change, but Henry is 100% better. His tantrums are normal and rare. He has control. Most importantly, he no longer hurts.
It has been surreal to witness food having such an impact on the brain. I can honestly say that I wouldn’t believe it if I didn’t see it firsthand. Friends and family didn’t seem to really understand what was happening and I think assumed we were exaggerating the situation. Figuring out these types of problems can be a lonely road! There is a lot of skepticism behind eating gluten free. I can tell you that not only has it changed Henry’s life completely, but my brain works better without gluten too! Although eating gluten is detrimental to a celiac, I truly believe that its not good for anyone.
The experience changed the way I look at food. Food is powerful. Every food that goes in your body is either helping you or hurting you. Through all of my research, I can tell you that there are many common behavioral issues and disorders that can be FIXED with dietary changes. I am not saying this is always the case, but I encourage people to try this route. If I hadn’t figured out the cause of his problems, I have no doubt he would have been eventually mislabeled by a doctor and prescribed drugs. Doctors should search for the cause of the symptoms, test appropriately, address diet and potential intolerances and LISTEN to the parents. The children in this country are facing horrifying health issues and I can promise that this is one of the many reasons. If your doctor doesn’t take your concerns seriously, move on. If your doctor doesn’t know more about nutrition than you do, move on. If they don’t know the side effects of the drugs or vaccines that they recommend, definitely move on! By the way, a year after I was talked out of the vitamin deficiency test for Henry, I had one done for him on my own through the same testing facility (no doctor’s note necessary). The result was four deficiencies. A parent must always question their doctors. It is our ultimate responsibility to keep our children healthy. Never fully entrust another human to do that.
The most important reason that I wanted to tell my story is to let parents know about the many types of allergic reactions and that they present themselves in various ways. If you or your child has issues with aggression, focus, severe mood swings, hyperactivity, tics and more (the list of issues that food intolerances can cause is endless), get the right tests done and start experimenting. This includes IgE and IgG4 reactions. Your doctor may not consider the IgG4 to be a serious matter, but I assure you that they can be. If you suspect gluten intolerance, remove it. Do a trial run for a month and see how your child feels. If your child is suffering, doing these tests could change their life, and you have nothing to lose. In fact, its your duty to do so as a parent. Just because this isn’t on your doctor’s radar, doesn’t mean it shouldn’t be on yours.
Although we can’t really go to dinner anymore and our lifestyle has changed significantly, our entire family is healthier and more aware because of this experience. Occasionally Henry will get slipped the wrong ingredient and I will see his behavior change. Throughout his life, unfortunately, he will be “glutened”. Its unavoidable. I hate this for him. But I must celebrate that I finally have answers and I will do everything to protect him. I have my sweet boy back.
~ Jennifer Pugh
Jennifer is a mom of three-year-old twin boys and a six-year-old boy. They are sweet and brilliant, and she is obviously head over heels for them. Most of her time is spent watching over her little ones, but she also volunteers at their schools and is eager to lend a hand with any children’s charity. She loves keeping healthy, traveling, listening to music and drinking an occasional bit of whiskey.
Yup. I just discovered my own child’s miraculous change in behavior, after discovering she’s a celiacs. Complete 180. Everyone thought I was mad or crazy for thinking the difference was in her food. :/ You are champ. 🙂 Keep it up.
Rebecca – I follow Andy Cutler as well due to our MTHFR genes, but I don’t think mercury is an issue for him. Knowing that we have these genetics, I avoid mercury completely (and other poisons). Susan – my dr recommended Enterolabs for the celiac genetic test. I believe they call it the gluten sensitive test or something along those lines. Lisa – I will look into uridine and mito disfunction. He hasn’t ever been on antibiotics though. Thanks for the ideas!
81% of people have either gluten sensitive genes or celiac genes, so its very common. My opinion on gluten being unhealthy is based on “Grain Brain”, “Wheat Belly”, the advice of my 2 doctors and naturopath, and the experiences of my family and friends who have experienced positive health benefits from removing gluten. I always tell people that its worth a 1 month trial to see how you feel. Even better advice is to remove processed food all together. Thanks for reading!
Just curious why you think gluten is bad for everyone? Including those who aren’t gluten intolerant or have celiac disease. Is there any scientific evidence for this?
What a champion you are to your children! I have been criticized and ignored by my friends and doctors for years over this issue. If have finally found a group of people who get the fact that “terrible” foods equal bad health, including mental illness. Thank you for you this insightful article, pray we all “get it” eventually :). Our children’s future depends on it.
Thank you for your kind comments 🙂
Thank you SOO much for sharing. I can’t say that enough. THANK YOU! There is still so much we don’t know about the human body & brain function, in general. We seem to think we know what we’re doing as a human species… so pompous and megalomaniacal. Worse still, most people are more interested in attacking others with name-calling. Oh, we’re so ‘crazy, melodramatic, paranoid’. REALLY?! Get a grip. The good thing is more and more people are finally waking up to the ongoing horrors of cheap, bullshit nutrition and premeditated experimentation by Big Pharma (all government supported), and finally realizing how these continue to negatively impact our children and future generations. Most prognoses are extremely difficult to assess given today’s environmental weirdness & synthetic, nasty GMOs. Evil enjoys hiding in plain sight, no doubt about that. But one day, the world will finally get it, take these things more seriously, and act in retaliation… thanks to the ongoing involvement of awake individuals, such as you, who’ve done their time and have come out on the other end with a stronger commitment to truth, health & well-being. Your experiences are so important. I can’t say it enough: THANKS AGAIN SO VERY MUCH.
This blog was… howw do you saay it? Relevant!! Finally Ihave found
something which helped me. Thanks!
How wonderful to hear that more people are being proactive in identifying the causes of behaviour patterns but also diseases that doctors and dermatologists cover with medication, knowing that they will return again and again. They choose not to advise their patients to examine their foods and food source in-depth. About 15 years ago, I was in a most terrible state; always fell ill after any meal, severe boils, eczaema all over my body, small purple pustules that when touched would burst and this fluid would cause further damage. One Christmas day, after a very ‘nice meal my mother and I had cooked for the family, I was overwhelmed with fatigue. As I lay in my mother’s spare room I chanced upon a health magazine and it opened to the centre page. ‘Does this describe the way you are feeling” (I did not keep the magazine unfortunatey). It describe very acurately the symptoms of someone with Cealic disease. I went on-line and was amazed to find the very long list of contributing factors. On my next visit to my GP, I showed him the list and he asked if he could have it as he had many patients with similar problems. I began to fine-tune my diet and over the years have finally found 99% relief. The problem now lies with Genetically Engineered food crops which are causing mayhem in the bodies of so many people, which includes increased cancers. My mother came on-stream with me when she saw how my life had changed. Her major problem was margerine, she finally admitted that she was taking a canola margerine and when she no longer took this, her skin rapidly healed. It will take time, but patience must prevail and examine everything you purchase for GMO labels, BREADS with no Glyphosphate (Round-up). Remove anything including shampoos that come into contact within and outside of your body from your home that has a scientific name and series of numbers. Wishing you continued wellness. Ohh yes, don’t forget to take half a teaspoon of Bi-carbonate of soda every day and breathe oxygen deeply into your stomach. Diseases like cancer cannot survive in a non-acidic environment.
I am a flight attendant. I have seen reactions like that in a couple of passengers. There was a Little boy about 6 years old, probably autistic. His parents ordered a diet Sierra Mist. I had a feeling that this child should not have artificial sweetener. Then I decided that I could not tell a stranger what their child should drink, so I served the diet drink. Moments later the child went into the most horrible rage, screaming “I hate you!, kicking biting and beating on his parents. It lasted 30 to 45 minutes, until the child completely wore himself out and fell asleep.
The same thing happened to another autistic child who was not verbal. He was fine and happy one minute, then went into the same horrible rage, biting and beating on his dad, who had to use all of his strength to restrain him. I feel like the trigger for him was a passenger several rows away who reeked of mothballs.
Jessica, I have friends whose children have life threatening allergies and you have all of my sympathy. I know that it must be terrifying. The test that Henry took was the combined E-95 and A-95 food allergy panel. It combined testing for IgE and IgG4 antibodies. The results don’t differentiate between the 2. Henry does not get hives or suffer breathing problems. He complains of a tummy ache, but the organ mostly affected is his brain. Although these types of reactions aren’t as serious as potential death obviously, I hope doctors will start to take them seriously as well. They lead to chronic problems. If I allowed Henry to eat as he wished, I don’t even think he would be allowed to attend a regular school. He wouldn’t be able to have functional relationships. It can be that devastating. Thank you for reading and good luck with your little ones.
Thanks for sharing! I definitely agree that food makes a huge difference in behavior, my children are proof as well. Just wondering, are all the “food allergies” more of an intolerance or are they actual food allergies that involve an immune system reaction(hives, swelling, rash, breathing difficulties, etc.)? Do your children require the use of an Epi-Pen if certain food allergens are consumed? My daughter has severe life threatening food allergies, as in one bite of the wrong food could kill her. She also has food intolerances which cause bad behavior, tummy upset, hair loss, etc. Actual food allergies are an immune system response that cause serious reactions and often lead to death while food intolerances do cause major issues they are not life threatening. http://www.foodallergyawareness.org/foodallergy/conditions_mistakenly_associated_with_food_allergy-13/ click on “Food Intolerance”
The first thing I want to tell you is that your little one WILL adjust to a change in diet. It might be a a bit of a rough transition, but you would be surprised how well kids tend to adjust. I think parents fear this more than we should. I have 3 picky boys and they have survived just fine. You could put a vegetable in front of your child for a year before they finally pick it up, but eventually they will! 🙂 No need to force it on them. Just give them healthy choices instead of the junk that they prefer. They will not starve themselves.
We made a slow transition to healthier eating. First I removed all artificial colors and sweeteners and HFCS. Luckily I was never big on those to begin with so this was easy. Then we pulled gluten. Henry ate A LOT of gluten. He really missed his favorite foods for awhile but eventually he forgot about them. Gluten free foods are easy to find but ultimately, many are equally unhealthy, so no one should stop their healthy eating quest here!
I recommend the book “It Starts with Food”. It really opened my eyes about the correct way to eat. I personally strive to eat Paleo for myself, focusing on meat, fruits, vegetables and nuts. I keep grains, dairy, and sugar to a minimum. This is tough for the whole family (sugar is the toughest one!) and we are always a work in progress.
For breakfast we eat bacon (nitrate, hormone free, uncured), occasionally eggs (not for Henry as this is an allergen), applegate sausage, paleo or vegan style muffins or pancakes , Skippy natural peanut butter toast on rice bread (I am transitioning to almond butter).
Lunches are much like dinners. We eat a meat like grilled chicken, pork tenderloin, or ground bison (Henry is allergic to beef) and add fruits and vegetables to it. If they haven’t touched their veggies by the end of their meal and I feel like they really need to eat more food, I will let them have PB or almond butter toast, a stretch island fruit leather, or an Annie’s fruit snack. Avoiding genetically modified food is important as well. We aren’t perfect, but we are always trying to do better. The few snacks I allow are organic and minimally processed. We typically eat raw dark chocolate as a treat.
Another test I would recommend is an MTHFR test. The easiest and cheapest way to do this is through 23 and me online. They will only give you the raw health data, but you can go to genetic genie.org and easily translate the data. My family and I all have an MTHFR gene mutation (A1298C) which depletes our B12, so we are starting to supplement. These gene mutations are extremely common (some think up to 30-40% of the population) and they cause many many problems. Again, these aren’t something that a typical mainstream doctor can help you with. But you should be able to find support online and advice on doctors who can help.
Any Lab Test Now or a similar testing facility should offer you the spectra cell micronutrient test which can tell you if there are any vitamin deficiencies. Or your doctor might agree to do this for you.
I hope this helps. Feel free to ask me any other questions. Good luck!
Pingback: The One Where Kara Admits Her Weird Food Stuff ‹ Mea Cuppa
Can you tell us more about what you do feed your family (typical breakfast, lunch, dinner?) I have an adopted little one from China with severe mood swings. I am suspecting she has numerous allergies, many possibly food related. She has a lot of “control” issues and will most likely “have a fit” about not being able to eat wheat, sugar, etc. How difficult was it for your child and your family to make the switch?
90% of Asians are lactose intolerant. Does she consume dairy?
Thanks for sharing your experience! It is a common one amongst my food allergy clients! I dealt with the same thing with our son 16 yrs ago. He has 17 food allergies and he is a completely different child. My clients range in age from newborn – 83 yrs old, and behavior/mental/emotional issues are a large symptom for most of them!! When a client comes to me with an ADD/ADHD/Austism diagnosis, I know I will be dealing with food allergies and we get to work.
Also, a few months ago I started our 15 yr old daughter on a daily vitamin. It was an allergy free brand from our health food store. Two hours after she took it, she began sobbing uncontrollably. I immediately identified it as an allergy to the supplement, because that’s what I’ve spent the last 16 yrs doing! There was nothing to do but hold her as she cried & sobbed for 12 hrs. The very next morning she woke up with her usual cheery self. She said she felt normal again and was thankful I knew it was the supplement. My heart breaks for those kids & adults who have no idea that foods, supplements & drugs can be the very cause of their psychological & emotional troubles.
Thank you so much for your comment! I am currently dealing with little details like vitamins. So hard to keep all the “bad” out and the consequences are horrible! What exactly is your business and where are you located? I know a lot of people who are interested in the “few” who get it! Feel free to email me. firstname.lastname@example.org
I love this article. I love that you were an advocate for your child. You knew something was wrong and even tho the pediatrician did not test or even believe you, you continued to search for answers. Kuddos to you! That is not an easy position to be in but you trusted yourself.
I am a nurse and a food coach helping clients in dis-ease heal their body with FOOD. Food is SO powerful as you stated. People have a hard time thinking that what they eat affects their health so profoundly. We are in a country with a ton of knowledge yet we feed our kids and selves the worst food that many other countries have banned.
Your son may never be able to eat processed food but as he gets older he may experiment a bit yet I don’t think we give our kids the credit that they deserve. If they feel terrible and in pain, I believe they will avoid the food.
Again – great job!
My dr/nutritionist recommends this test. I will add that he didn’t recommend their other tests as he feels there are some potential errors with the stool tests. But he finds the genetic test to be very accurate. Its the last test on this link. HLA-DQB1 analysis. https://www.enterolab.com/StaticPages/TestInfo.aspx#gene
Thank you for posting this! More people need to understand this! I am gluten-free due to nonceliac gluten sensitivity (diagnosed by a gastroenterologist and confirmed by allergist/primary dr) and had MANY symptoms, including irritability and depression, for more than 30 years before I was diagnosed. Our son is also allergic to 20+ foods, three of which are life-threatening. I was also SHOCKED last month when both our psychiatrist and allergist (both of whom are board-certified and highly respected) recommended that we put our daughter on a gluten-free diet. She was diagnosed with major depression and anxiety disorder three years ago and has improved due to meds, but when her doctors learned about my gluten diagnosis, they said we DEFINITELY need to try it with her. I was floored that my own doctors and my daughter’s doctors are giving so much credibility to gluten sensitivity, since many Western doctors do not. But as my allergist said, “Just because we don’t have a test for it, doesn’t mean it isn’t real!” I was so happy! Our daughter and we decided to wait to try the GF diet for her over the summer, since she has been doing so well and we know it may be a rocky road as we try to figure it out. We’ll be trying it soon. Thank you so much for sharing this important message. It is a lonely road indeed.
Laura, we did an HLA DQB1 analysis. Does that answer your question?
“He instead recommended a genetic test because he also suspected celiac. To have celiac, you need specific genes. Gluten is the trigger for this autoimmune disease. The results of this test showed he had the two main genes for celiac (his brothers do, too).”
I would also like to request these tests. What is the name of the tests for this?
Thank you for the thoughtful and interesting post! I’m so glad that your family has found a way of healing/coping! Another thing that you may want to look into is Henry’s mitochondrial functioning. Everything is interconnected, so of course mitochondria are related to diet and allergies/extreme food sensitivities. Here is an interesting article about how uridine – http://en.wikipedia.org/wiki/Uridine – can help with treatment of bipolar teens – http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3080753/. Urdine is essential for proper mitochondrial functioning. Here is another post (that I wrote) about how some antibiotics can affect mental health – http://www.hormonesmatter.com/antibiotics-psychiatric-reactions/
I hope that you continue to find answers! Wouldn’t it be nice if doctors were more useful when it came to this stuff? I think it would be.
Strange that western medicine is so deficient in nutritional information and knowledge of what harms, when the considered father of western medicine, Hippocrates in 460-370 BC, said:
“Let food be thy medicine and medicine be thy food.”
And…the Hippocratic oath that is sworn by conventional doctors:
“I will prescribe regimens for the good of my patients according to my ability and my judgment and never do harm to anyone.”
For those moms, dads and conventional medical doctors who do understand about food and what harms, thank you. We can make the world a better place for kids…one food choice at a time, one insight at a time…and by sharing with others. Thank you TMR and Jennifer Pugh!
Thank you for sharing your son’s story Jennifer. I have 3 boys myself. 2 on the autism spectrum and one with ADHD. My youngest had severe eczema and a very self restricted diet. I pushed for an allergy referral they gave me dermo first. When.i finally got to the right doctor who ran the IGe and IGg he had a plus 3 sensitivity to wheat. No more wheat and now no more eczema!
Andy Cutler has said that your child is not recovered until he can eat anything without getting sick. He also talks about children who have all their symptoms under control with diet and supplements but as soon as they get old enough to rebel you have a problem. If the issue is mercury, and it usually is, you have to chelate implacably until it is all gone.
Can you tell me which genes are tested for?