10 Tips: How to Handle Children with Emotional Fits/Tantrums Due to Gluten Exposure

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I got an email from a mom yesterday asking me how I handle my child when she has an emotional fit or tantrum due to being glutened. That’s a really loaded question, and one I get incredibly emotional over. I don’t mind people asking, and I’m very glad this mom reached out to me for help. But… that question also hits a very, very raw spot that I haven’t quite opened up about. Until now. 

When our daughter, Abbi, was about 14 months old, she started throwing tantrums that included crying fits of rage that went on for hours. At first my husband and I were very confused. We discipline our children. We do time outs; we take away toys… where were we going so wrong that our child would exhibit this horrible behavior? Anything and everything would set Abbi off – from her sister looking at her weird, to not getting to drink out of the right cup for the day, to a cartoon on TV… And of course, she was so little she couldn’t communicate with us or tell us what was wrong. 

How to Handle a Child with Emotional Fits Tantrums Due to Gluten- Allergy Free Alaska2

At that time, Abbi was still sleeping in her wooden crib. When the tantrums escalated to the point where I needed a break, I’d put her in crib. Until I discovered she started trying to physically harm herself. Abbi would throw herself up against the crib; bang her head against the crib… there would be bruises… I was horrified. I would sob out of sheer emotional pain, exhaustion, and desperation. We ended up buying a pack and play, so when Abbi would throw a tantrum I could put her in it; it was soft, so we both could get a break and I knew Abbi couldn’t physically harm herself. 

Months went by of this behavior. It was a very ugly and dark time for my family. We all suffered. We didn’t want to go anywhere with Abbi because she was such a loose cannon. We walked on egg shells around her. Everyone thought we were exaggerating or just not disciplining our child properly. We were judged. We were talked about. We felt embarrassed and shamed.

It wasn’t until my husband made the comment to me, “I wonder why Abbi’s stools are so loose?” that something clicked. As a mom, sometimes you get so used to seeing your child’s stools day after day that what’s normal and what should be get mixed. Abbi’s stools were never really, really watery, but my husband was right, her stools were most definitely very loose.

I still feel guilty that I didn’t recognize my own daughter was having diarrhea on a daily basis. If only I would have paid attention more. If only…. but nothing will change what happened. I’m trying to let go of the guilt, but some things are simply easier said than done. In short, I’m still working on it.  

Since I had already been gluten free for a number of months due to my own health issues (you can read more about that here), I started researching celiac disease, particularly in children. I wish I could find and provide the link to the actual article I found back then, but basically I found an article pointing to evidence suggesting gluten can have an effect on the brain, thus making some with celiac disease or gluten intolerance highly volatile emotionally. It was a no-brainer (no pun intended). My husband and I both agreed we immediately needed to put Abbi on a gluten free diet to see if it helped. So that’s what we did, and within a week Abbi’s emotional fits/tantrums improved. They didn’t disappear, but there was an undeniable improvement. 

How to Handle a Child with Emotional Fits Tantrums Due to Gluten- Abbi and Thor- Allergy Free Alaska

A week and a half after we removed gluten from Abbi’s diet I took her to see the pediatrician for her well-baby checkup. I shared with the pediatrician a few of Abbi’s symptoms and how removing gluten from her diet had helped, yada, yada, yada…. Our pediatrician in not so many words told me I was crazy and that, “I couldn’t possibly know what a gluten-free diet consisted of.” She also said if we’d like Abbi to go under and have an endoscopy to test a portion of her small intestine she’d be happy to schedule it. But she wasn’t being kind in offering that… she was throwing it in my face knowing full well I didn’t want to put Abbi through that. I left the appointment sobbing, and vowing we would never return. And we haven’t. 

After I collected myself from the appointment with our pediatrician, I made an appointment to take Abbi to my natropathic physician (Dr. Amy Chadwick of Soaring Crane Natural Health Center in Palmer, Alaska). She was kind, understanding, and she agreed Abbi probably did have issues with gluten, so we continued with the gluten free diet. Over a few more weeks there were more behavior improvements, and her stools gradually started to firm up, but Abbi was still reacting to something, so my ND suggested removing corn. The change in Abbi was nothing short of miraculous. She went from being a very unhappy and emotional little girl, to a little girl that was happy and playful. Abbi was thriving, and hardly ever threw anymore tantrums, or if she did, they were the normal ones you would expect from a healthy toddler. 

Words can’t adequately describe the pain that still lingers from what we experienced with Abbi, and there’s a big part of me that wants to hide it away not to be shared. But… that won’t help anyone else, will it? Nor will it help me. Writing is cathartic for me, so in writing this I hope part of that very painful and raw place will start to soften so healing can begin. 

How to Handle a Child with Emotional Fits Tantrums Due to Gluten- Allergy Free Alaska

Abbi is 5 1/2 now and completely gluten free, corn free, and dairy free. We try our best to ensure she doesn’t come into contact with gluten, but it still unfortunately and accidentally happens from time to time.  When it does happen, Abbi still has emotional breakdowns and tantrums. These are some of the ways our family has learned to handle Abbi during the time she is glutened, and some of these are more generalized. I hope sharing these suggestions might help another family out there. 

10 Tips: How to Handle Children with Emotional Fits/Tantrums Due to Gluten Exposure:

1. Do the best you can to ensure your child isn’t exposed to gluten. Be a food nazi. I literally pack and take food everywhere we go. I even have a stash of treats in my purse when a store owner or someone wants to reward my daughters for good behavior. No one is allowed to feed my children anything unless I okay it first, and I’ve been incredibly vocal and overbearing about this, while being as polite as I can. In a medical situation such as this, it’s imperative you protect your child and draw healthy boundaries with others, whether it be a teacher, Sunday school teacher, family, friends, etc., or all of the above. People (mostly) mean well, but just because something is labeled gluten-free doesn’t mean it’s safe for my daughters to eat.  It’s hard for others to understand that. 

2. Give lots of extra love, time, and attention. When Abbi is glutened, she mostly just wants her mom. We spend more time than normal just sitting, cuddling, and being. She gets emotional about everything, but the smaller things she gets frustrated with (which normally wouldn’t be a big deal to her) I try to make better – like her hair, or not being able to build the Legos like she wants, or not being able to find her favorite stuffed animal. 

3. Try not to lose patience. This goes hand in hand with #2. It’s so easy to get frustrated with a little one who is highly, highly emotional and has been crying for hours. Believe me, I totally get it. But try to remember they are “sick” in a sense, and often don’t even understand why they are crying. During one emotional breakdown with my daughter several months ago I asked her why she was crying. She couldn’t even give me a reason. She continued to cry for a good 20 minutes before the crying turned to laughing for 5 minutes, and then she switched back to crying again. Bottom line, Abbi was not in control of her emotions, and couldn’t regain control even if she wanted to. 

4. Acknowledge they are “sick,” but don’t use it as an excuse to let bad behaviors slide. We have rules in our house, and the girls know what is acceptable behavior and what is not. I don’t let Abbi get away with bad behavior when she’s glutened. She still has consequences, although I find those consequences don’t have to be nearly as strict when she’s so sensitive and emotional. Generally, a verbal correction will be all that is needed vs. a time out or taking a toy away, etc. But, there are always exceptions, and each child is different. You should always do what you think is best for your child. 

5. Make sure their bellies are full with good food. Hungry children are generally cranky children, and I think this is amplified x’s 10 when they are glutened. If Abbi cries uncontrollably near dinner or lunch time, I know that she’s “crashing,” and needs nourishment ASAP, so I give her another healthy snack, such as apple slices, almonds, a banana, etc. and quite often her crying miraculously stops. I also make an added effort to make sure Abbi gets plenty of bone broth, probiotics, ginger, and other gut healing/detoxifying foods to help speed up her system ridding itself of the gluten. 

6. Make sure your child gets sufficient sleep. Just like hungry children are cranky children, sleepy children are also incredibly cranky. If your child naps, try to make sure that nap isn’t skipped. Or if you child doesn’t nap (like mine), try to put them to bed a little earlier than normal. 

7. Use animals as therapy. 25-30 minutes into a gluten-induced crying fit I made our 100 pound lab, Thor, come and sit in front of Abbi and I told her to pet him. I didn’t ask if she wanted to pet him, but I told her to pet him. Thankfully she listened and within just a few short minutes of petting Thor she became calm. Animals are incredible beings and can sometimes reach people when other humans can’t. When all else fails, try using your family pet to help calm your little one. 

8. Be a little more lenient with TV, games, or other electronic devices. Not something I would normally recommend, but let’s face it: when your child experiences emotional fits/tantrums due to gluten exposure, your house goes into automatic survival mode. If watching two movies back to back will give you and your child some much needed down time, then go for it! Sometimes you have to allow them time to indulge simply because you need a break… and there’s nothing wrong with that.

9. Your mental health affects theirs, so make sure you also take care of you. When Abbi is glutened the effects can last anywhere between 2-6 weeks. After days/weeks of dealing with it I become incredibly drained and irritable. I can’t properly take care of my children when I’m emotionally running on empty. Let your spouse take over the parenting for the evening. Take that super-long door-locked bath. Go out to coffee with a friend, or if you’re super desperate, at least try to get away to go grocery shopping kid-free. Your mental health is just as important as theirs, so make sure you get some personal time to relax. 

10. Don’t knowingly give your child gluten. This is my biggest pet peeve. If you know your child has an outright reaction to gluten, do not knowingly give in and let them have that doughnut at the grocery store, or the cupcake at the party because you didn’t have time to make any that are gluten free. Buck up, parents, and protect your child. Let them throw a tantrum because you wouldn’t allow them the doughnut and use it as a training opportunity. If we are at a party and I forget their treat, I let my kids know they can’t have a treat at the party, but as soon as we get home they get to have it. Or we’ll stop at the store after the party to pick something up. Do I feel terrible about forgetting their treat? You bet! Are my girls upset? You bet! But dealing with a minor disappointment is SO much better than dealing with 2-6 weeks of emotional hell. And really, in the grand scheme of life, it’s just a slice of cake or a cupcake, right?! 

What about you? Do you have a child that experiences emotional fits/tantrums due to gluten exposure? Is there a special way you’ve learned how to handle it? I’d love it if you would share your stories with me; please feel free to leave me a comment below. 


This recipe is linked to, Marvelous Mondays, Fat TuesdayAllergy Free WednesdayGluten Free Wednesdays, Waste Not Want Not Wednesdays, Frugal Day Sustainable Ways, Thank Your Body Thursday, Simple Lives Thursday, Pennywise Platter, Fight Back Friday and Gluten Free Fridays. 

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  1. says

    Megan–As I said on Facebook, I so applaud you for writing this post and being willing to share your family’s story! This is such a very, very important post. I hope over time that you will be able to let more of the hurt go. As moms we do the very best we can with the knowledge we have at the time. As soon as you knew better, you did better! It was all new to you. So many moms would have backed off on the gluten-free diet as a remedy when their doctor dismissed it. You did not. And you’ve stayed the course to help Abbi and so many others reading all the time and especially today. Thank you for being willing to share this important reality with everyone! Even as an adult when glutened, I have emotional upsets and will suddenly be angry and curse. It takes me a good while to realize that I’ve been glutened and usually there’s not much I can do about it. I treat it like other cases of being glutened. I try to remove the gluten through detoxing rituals and remedies, am gentle with myself, etc. You are so right about the pet factor, too. It’s actually been proven that petting one’s dog or cat has a huge calming effect. That’s why therapy dogs are so helpful in hospitals, nursing homes, etc. I could say much more, but thank you again, Megan, for sharing this post! Big hugs to Abbi, too! She’s a doll.


    • Megan says

      Thank you for being so kind and uplifting. :) A very hard subject to talk about, but you’re right – a very important one. I can only imagine what our lives would have been like had we not made the connection to gluten. The thought of it literally makes me tear up… and the idea that there are families out there struggling that don’t have a clue. :( I truly wish the medical community as a whole would put more stock into food allergies and the effects they can have on an individual. Makes me want to print out this post and mail it to that pediatrician!
      Lots of love,

  2. says

    Fabulous post, Megan! I know it wasn’t an easy one to write, but I know it’ll help a lot of other frazzled parents along the way. (((HUGS))) Man, that Abbi sure is cute! <3

  3. says

    we deal with this all the time Megan! Both of my kiddos with gluten allergies have absolutely horrendous behavior and meltdown after meltdown when they eat offending foods. We are just dealing with the aftermath of some Odwalla Superfood …boy does it make our job hard! Dealing with an ADD child is hard enough…but it DOES get obviously worse when she eats gluten…..the raw emotions, the weepiness, the volatility…it is downright exhausting and emotionally draining. And the criticism and eye rolls of other people when I am being a food nazi…it sucks. It makes me doubt myself if only for a moment. We never had much luck with our pediatrician either…he didn’t make me feel bad, but he did look at me like I had two heads! I share more on her story here (so much like Abby, as you noted!) http://www.tessadomesticdiva.com/2012/08/gluten-add-sharing-our-experience.html
    Anyways, you ARE a good momma for following your gut and listening to your instincts. For making countless food items to bring along everywhere you go…and believe me, I KNOW how hard that is, how inconvenient it is sometimes, for loving your daughter and taking the time to understand her.

    • Megan says

      Thank you so much for sharing the link to your story here! I think the more of us parents that connect and share our stories, the better. Although I’m so sorry you experience some of the same things with your children that we do. It’s heartbreaking. For both them and us.

  4. says

    Hi Megan,

    Thank you for sharing this story. It takes courage to share…and to share something that is very raw and something you are still processing. Your story will most definitely help others!

    You are a wonderful and loving mommy and your children are so lucky!

    Your 10 tips are right on! I love the animal therapy suggestion.

    Big hugs to you and your family.


    P.S. Your daughter is just precious and beyond adorable!!!!

  5. Rebekah says

    Thanks for sharing your experience. We have the same situation with our daughter that has a gluten, dairy, and corn intolerance. She has less tantrums, but more crying, or a feeling of being overwhelmed, easily frustrated, and shook up by any little thing that happens. She is 12, so she is aware of the symptoms, so we talk about it. Right now, we are transitioning from me being in charge of her diet to her being in charge. It’s a tough transition, but one I think is needful. At some point, she is going to have to decide for herself not to eat the foods that make her sick. This is our major challenge right now. For the most part, she does really well.

    • Megan says

      Hi Rebekah,
      Thank you for sharing. That’s one of my main concerns with both of my girls – there will come a point when they will have to be in charge of what they decide to put into their mouths. I keep praying that my husband and I can be good teachers and carry on that constant open dialogue that is so necessary in a situation like this. If you (or your daughter!) ever have any more advice in that area over the years, I’m all ears! 😉

  6. says

    Thanks so much for sharing this Megan! I really admire you – I haven’t been brave enough to write about our struggles with my son.

    I’ve left my fair share of pediatric appointments crying and also face a lot of criticism for being so strict on our diet from friends, family, and strangers who just don’t understand. You’re a great warrior mom – keep up the good work because it will all be worth it.

    Much love,

    • Megan says

      This just breaks my heart. :( I’m so, so sorry so many appointments ended in tears, and that you too receive criticism from others. I wish I could give you a hug; you’re an amazing mom. It sure is hard to keep fighting though when so many give us such a hard time. Sending you lots of love and ((hugs)).

  7. Joanne Peterson says

    Hi Megan,

    Thank you for this article, I’m beginning to seriously consider if this may be one of the things at the root of our two boys behavior. This was briefly mentioned in one of the books I am reading with adoption issues. But, your symptoms hit it right on the head. I am going to try the food Nazi with my two boys for the next 6 to 8 weeks and watch to see if they have behavior improvements. This was like a light bulb went on in my head and could also put 2 and 2 together.



    • Megan says

      My heart dropped to hear you also struggle with the same issues. ;( Please keep me posted on how the boys do if you do decide to put them on a GF diet full time. Praying for you, my friend!

  8. says

    While I know that soy, dairy, sugar and preservatives/dyes have had an impact on our daughter with autism, I’m always unsure of gluten since we didn’t see many changes when we removed it. This week, our homeopath told us to relax a bit because the allergy indicators were not high on our kids. So while we traveled this weekend, I didn’t lax on the gluten intake, but I was less of a nutjob about infractions and cross-contamination for a whopping 2 days – and paid the price upon our return with a return of tantrums and noncompliance. (It’s also full moon, perhaps that’s contributing?) So I’m back to cleansing and pouring on the activated charcoal. This is a great list of advice, I’m not going to beat myself up but move forward to clean her back out.

    • Megan says

      Traveling with food allergies/sensitivities is so difficult!! And then it’s hard to watch our children suffer when we truly did the best we could. Hugs to you and your daughter; I hope she feels better soon. Thank you for sharing!

  9. Jen from Marysville, WA says

    Dear Megan,
    Thank you from the depths of my heart for writing this post. I’m holding back tears thinking of God’s goodness leading me to see and read your post today. Lately, my older 4 year old son has been so out of control and I’ve been wondering if maybe it is due to food intolerances that I thought were gone by now. Thank you for sharing and being so inspiring and encouraging with your stories and tips. It’s so refreshing to feel not alone.

    With Overflowing Gratitude,

    • Megan says

      I had no idea what type of response I would receive once I hit the “publish” button on this post. I hesitated for a moment before I followed through with pushing that button, but I’m so glad I did – for you and everyone else out there going through something similar with their children. You’re not alone, and don’t ever doubt that you’re an amazing mom. Praying that you are encouraged and blessed!

  10. Erin says

    Thank you for sharing this, really. I have followed your blog and Facebook for awhile. I truly enjoy your recipes. We have always been very strict with diet with my seven year old, since we figured out it worsened some of his autism meltdowns. We’ve always been rather lax with my youngest, but reading this today helped me re-connect the dots that a lot of his anger issues are mostly gluten related (I think it’s tough to realize sometimes because we’re around them so much). He’s usually much more happy and not so quick to anger during vacation times from school when I can monitor. Thanks. From the bottom of my heart.

    • Megan says

      You’re very welcome. I’m glad sharing our story helped you re-connect the dots. ;( Although I’m sad to hear you are going through some of this too.

  11. Lynn says

    Hi Megan,
    Thank you so much for sharing. My kids react this way as well to gluten…but it was so difficult to know at first. My son is autistic, at age 3, his personality began to change. He became a gloomy kid, alway unhappy, frowning, crying, meltdowns over the smallest of things. Some days were good but then more and more there seems to be less and less of those days. I did hear from a friend who put her child on a gfcf diet and decided to give it a try…afterall, I was desperate. It was amazing, the tantrums, crying, trying to hurt himself, lessened over time. I did it slowly, since what he ate was mostly bread and cheese and drank milk, it was hard, to say the least. So, I one or two items at a time. When he was 100% gfcf, he was back to the kid I remembered. My other 2 children are not autistic, but I noticed, also started to have those same symptoms when they eat lots of gluten.

    Did you ever get validation from a physician? Did that natropathic physician test your daughter? I am asking because my spouse does not believe me when I say that our son reacts badly to gluten foods. I have gone to numerous physicians to try and get some kind of test done to prove that I am not imagining things. His developmental physician we recently went and saw, said that we could do a celiac test, but it would require he load up on gluten for 8-12 weeks. But, she admits, it does not show if a person is intolerant or sensitive to gluten. There were other tests, such as a genetic test, but does not definitively show a person has celiac disease either. No tests out there showed the sensitivity or intolerance. What is your take on this? I am eager to hear your opinion on this. Thanks.


    • Megan says

      Thank you for sharing. I haven’t received any sort of validation, other than what I’ve seen with my own eyes, and what our naturopathic physician has also confirmed. That’s all the validation I need. We never had Abbi actually tested for celiac disease or a gluten intolerance/sensitivity. Dr. Amy at Soaring Crane Natural Health Center (our ND) provided ME with the celiac disease genetic test, which I tested negative for. Since I tested negative, and I’m Abbi’s mother, Dr. Amy told me it would be highly unlikely that Abbi would have celiac. BUT, it’s completely obvious Abbi and I both have what you would technically call non-celiac gluten sensitivity. And honestly, it makes no sense, nor is it worth it to us to put Abbi back on gluten just for a blood test. Whatever the results would be, it wouldn’t change the fact that she needs to remain gluten free.

      Does your husband not see the behavior difference in your son? I’m assuming he must not. I can see how you would want validation in that situation… Is there an ND in your area that specializes in food allergies? In my opinion, ND’s often times know more about food allergies and intolerance than the average physician/MD. Maybe if you found a reputable ND, you could ask them what their take on it would be? I can’t say I feel qualified to answer your questions (sorry).

    • angela says

      I appreciate your article. We have been on a very strict diet for around 5 years now. your description of how your daughter acts with gluten describes my youngest daughter exactly. It’s good to know I’m not alone in this battle. I wanted to tell you of 2 blood tests that we had done. The first is ALCAT and it shows food intolerances. This is the first test we did and when we began avoiding the foods on this list, there was a tremendous improvement in behaviors. Then we did the ALLATESS test. This is where the gluten and sugar problem showed up. We avoid the foods on both tests and have seen major improvements. I also just discovered the benefits of raw milk. My daughter has been casein free for a while, but she does perfectly fine with raw milk. In fact, there are studies that show that autistic behaviors completely disappear after 2 months of drinking raw milk. Amazing!

  12. says

    As an adult with celiac disease, I know how emotional I get when I am exposed to gluten. It is HORRIBLE, and I am not in control. This is such a helpful post, I think people have a hard time understanding it. Thanks!

  13. Erika says

    Thank-You, Thank-You, Thank-You for sharing your story and writing this!! As I read, it seemed as if you were talking about my child. She is 18 months old now and we have been struggling with the same issues since she was an infant. Hearing your story helps to confirm things I have been thinking. So, thank-you again for writing your story!! It is comforting to know that we are not alone and that there is hope to help her through this! Here is to remaining gluten free & dairy free! Looks like I will be looking into corn now as well.

  14. Linanne Spangler says

    Thank you for sharing this .It brought back many teary feelings.People were hesitant to believe me that I saw a direct connection between food and my sons behavior. My own allergist tested him and I removed the foods from all our diets. This was 30 years ago and that meant making everything we ate myself. Within two weeks what a difference. A friend showed me how to wrap and hold him when he was upset and I used this even when he was 7 or 8.the smiling faces of our beautiful children will let us know we are right.

  15. Summer says

    Your post hit very close to home. My son reacts this way to gluten, corn, dairy, certain fruits and vegetables, dyes… Basically everything. Add to that being born with Lyme Disease, ADHD, etc. I also have Lyme and a host of other illnesses, as well as many of the same food intolerances. We treat holistically, but it’s so incredibly hard. Anything can set him off. He just turned 7, and we are attempting to homeschool. Yes, I said attempting. He couldn’t handle school for so many reasons. It takes so much effort just to manage, and keep him somewhat reasonable. I’m always exhausted, physically and mentally. The times are few and far between when he’s the sweet, reasonable boy that he would be without all these difficulties. People with “typical” children don’t understand at all. They think he’s a brat and we are bad parents. Right now I’m considering whether he is capable of handling a family gathering tomorrow… Hang in there. It’s nice to know I’m not alone, but also sad that there are other children and Moms that have to deal with this constantly.

  16. Alexandra says

    Thanks for your story & your honesty Megan. I can understand how vulnerable you have felt when other people do not understand & judge when they have not been through it themselves. Even medical professionals!!!
    I am gluten, dairy, corn, soy, preservative & additive free so I know what its like to be Abbi. At times it can be HELL. At 30 I still have meltdowns if I have any of the above & I know how powerless and frustrating it can be for my husband and family around me. I have needed someone to understand what I have been going through at it really touches me how much love and care you put in to Abbi’s experience. It takes courage to take a firm stance but so necessary to protect your children. From someone who understands! x

  17. Brandy says

    Xanthan gum is derived from corn. Just something I wanted everyone to be aware of. Consider using guar gum or psyssilium husk.

  18. Becky says

    Thank you for sharing this. You described my son. I cannot thank you enough.
    Thank you so much for writing this.

  19. Amanda says

    Thanks for this post. We have similar issues, and I find the hardest is that first day — before we realize that it’s gluten. Out daughter has no immediate external symptoms of her celiac, so an accidental glutening *really* sneaks up on us. It has only happened a few times since she was diagnosed, and every time I feel terrible once I realize she is not suddenly bearing the fruits of poor parenting but is instead sick. Once I piece it together, we can usually talk about it, start helping the healing, and all alter our expectations (like you said, though, without allowing active disobedience or meanness). And you’re right that some people who really care about us quietly think that I’m making it up. I still know my kid, and those few days at a time are definitely not her — and they are far enough outside the lines of the child I know to make me confident that it’s gluten.

  20. Mojo says

    Thanks for sharing. The emotional roller coaster you describe fits my son — but he has not had the GI symptoms you describe. Do the emotional breakdowns come immediately after consuming gluten, a few hours after, or when? I want to connect the dots in our own case but am still not sure what to be looking for, and when. Also, does corn contain gluten? What’s the connection there– or are those two unrelated food allergies?

  21. Michelle Bell says

    Wow! i just read this and it sounds like our 8-yr old!
    She was a wonderful baby/toddler, but In the past two years she has had a lot of tantrums and I don’t know why.
    She sleeps and eats well and has no reason to be so crabby most of the time.
    Not sure if it’s food related or “just a phase”
    Pretty much anything sets her off, though mostly hearing the word no.
    She has the opposite problem with her stool, though. Pretty sure it’s because she doesn’t drink enough at school during the day.
    I have heard that gluten can cause constipation, so trying to limit that. The milk and corn are a shock, that would be very hard. Thanks for posting and any help would be appreciated.
    Megan, so sorry you had the awful experience with your pediatrician. That happened to us when our daughter was a baby. We never went back to him.

  22. says

    Megan, thank you so much for sharing your experience! I know it was hard to do without beating yourself up over hindsight. I think it’s amazing that you were able to figure it out while she is still young. My neurological symptoms started early, but they were different and no one knew that they were connected. I was just “clumsy” and inherited the migraines from my dad. I know what it’s like in Abbi’s shoes to have such a low frustration tolerance and not understand why. I really thought I was going to end up in a psychiatrist’s office, leaving with a prescription for a psychotropic and a diagnosis of Bipolar Disorder. I know now when I can’t control my mood that something is way off in my body. It also makes me wonder how many of my former clients had an issue with gluten and didn’t know it. It is completely heartbreaking to see them so out of control that they start self-harm. In my case, we were trained to understand the curve of acting out behaviors and the components. Understanding is one thing, watching it and having to intervene is completely different. Sending you BIG HUGS.

  23. says


    All I can say is OMG. I thought our daughter’s reaction to gluten was unique. When we found out our daughter was gluten intolerant. We took her off gluten. We had four days of DTs, as bad as a drug addict quitting a drug cold turkey. She was on the floor screaming, out of control for four days. We almost took her to the ER because we had no idea what to do.

    By the fifth day, it was like we had a new child. The tantrums, anxiety, and migraines were all gone. It scared her as well and that is the one reason she will never cheat and eat gluten. She recognized she wasn’t herself.

    Now we know if she gets glutened because she gets weepy and out of control. There have been several studies lately that connect gluten and the brain and I fully believe them.

    Thank you for sharing your story. It was incredibly brave and it will definitely help other parents recognize if gluten is affecting their child in this way.


  24. says

    Megan, I know this was hard to write because I have experienced that kind of mother guilt for other reasons. But you really did do your best, and you did figure the problem out. In my mind you did a great job and are a wonderful mother! I have been thinking about writing another post about the mental affects of gluten. I wrote about how gluten affects me mentally several years ago. But since then two of my young adult kids have gone gluten free and both had/have mental effects. We only figured it out with the second one in recent months, and while he’s not throwing fits, his depression and anger are not easy to deal with, so this is fresh in my mind. It definitely helps other people to read stories such as yours. If they haven’t figured out the gluten connection it might help them to do so, and if they have, it helps them to know that they are not alone in having that kind of reaction. Thanks for sharing!

  25. says

    These seem like fantastic tips, in part for any parent but especially for those in our community. By the way, for what it’s worth (probably not much), I don’t think you should feel guilty for not recognizing your daughter’s diarrhea. According to many doctors, their patients don’t even recognize what they themselves have as diarrhea (or constipation). There’s so much variability, and we’re so close to it, that it’s hard to know what’s normal.

  26. Shelly Rasmussen says

    OH to be a “guilt free” mother! I don’t think that’s a possibility in this world of ours but it sure would be nice if the public at large would validate our actions and concerns instead of labeling and criticizing us. Have you ever noticed when a child gets into some kind of trouble the first thing they ask is “where was the mother?” ARRRRRG……

    My daughter was not diagnosed with Celiac disease until she was well into her 20s. She and the rest of our family went through chaos and trauma for 15 YEARS not knowing what was going on. Her physical symptoms were not severe but showed up right away. First they thought it was lactose intolerance and she was put on a “soy” formula. That helped some but we still spent many many hours walking the floor with a baby who just couldn’t get comfortable. Here stools would either be very loose or very hard – no in between. Her “stomach” complaints continued as we battled constipation and diarrhea. She was an adorable and very sensitive child who what seemed like overnight became a raging urchin we didn’t know. This was also accompanied with migraine headaches. By the time she was 10 it felt like our world had been turned upside down and we didn’t have a clue what to do or where to turn. It didn’t help that she had severe asthma at the time as well. In grade 6 a school psychiatrist strongly suggested that we have her admitted to the psych ward as she was very concerned that our daughter would harm herself. I said no and tried my best to keep a 24 hrs. watch over her.

    I was beside myself with overwhelming guilt. I could not figure out what I was doing wrong or what I was missing to do. I fought on so many fronts to get “experts” to see her but I was written off as an over reactive Mom who needed to assert herself more in terms of setting boundaries for my daughter (that still explain the physical problems; that was easy for them to sweep them under the carpet I guess.) Rounds of therapy sessions in a number of different settings proved to be of no help and just upset her more. When depression set in in her 20s it was not a surprise at all….. and I myself was struggling with the same debilitating mental illness. A fine pair we were!!!

    Is there a happy ending to our story? Yes when it comes to Celiac Disease and overcoming many of the manifestations of it. She must follow an extremely strict gluten free diet and be on the look out constantly for cross contamination. She also discovered that gluten derivatives are often used in personal care items as a binder and as soon as she switched to those that didn’t her complexion cleared right up. It’s also interesting to note that her migraine headaches are now much fewer and further between.

    Today she is in her mid-30s and an amazing mom to a 19th month old daughter. She is being very careful about giving her anything with gluten until she can be tested for celiac disease. Personally I think it’s a smart choice. Our granddaughter is not suffering in any way because of the lack of it in her diet.

    And one other positive thing that came with the diagnosis is that I was able to see that it wasn’t my fault at all. It took a huge weight off my shoulders I can tell you..

  27. says

    Thank you so much for sharing this. It is mostly common sense but it is oh so helpful to have it in writing AND know I am not the only one dealing with this. We are just finishing up our first year of gluten free with my daughter (who will be 5 in Aug) and it has been an emotional roller coaster for sure. I will keep this handy for the next time she is accidentally flattened! How did you decide about having to go dairy free ?

  28. says

    Thank you for such a sensitive and helpful post. So many people suffer symptoms both physically and mentally that they have no idea that it could be food related. It takes courage to stand up to a doctor who makes you feel inadequate. I’ve been there myself and have changed doctors because of differences of opinion and their attitude. I too felt that Natural doctors were the most helpful and supportive. Thank goodness you found the solution for your daughter. How many temperamental unhappy kids are just reacting to the food they eat. This is such a great post. Thanks

  29. sabrina says

    Love your heartfelt story. Thank you for sharing it. Abbi is a doll!!!! I have a very similar situation with one of my children. Would love to know some simple snacks to give my son on the go. Always looking for new ideas! Will check out your recipe link too! Thanks so much.

  30. Michelle says

    I’m so glad I found this post! I was just researching gluten intolerance in toddlers and ran across this. My 2 year old has the worst emotional breakdowns about the most minor things and he’ll scream and scream if he doesn’t get something. I didn’t think this was normal because we discipline consistently and don’t let him get away with things. And he has very loose stools that burn his bottom every time. We’ve been experimenting with cutting out various foods but have only gotten as far as dairy and haven’t noticed any improvement. My 9 month old has a diary sensitivity so that was my first thought. I just recently started learning about the paleo diet and healthy eating so I thought my son’s behavioral and diaper issues might be diet related. This post was very helpful in convincing me to cut out gluten for my son. Thanks so much for sharing your story! So very helpful! :)

  31. Anne says

    Thank you so much for sharing this story. I don’t have children, but I can relate to this experience from my personal journey. I had not one but 12 doctors treat me with a similar level of disrespect because of their ignorance about gluten and the gut-brain connection. I am well educated and did a lot of reading on my own to try to figure out what was wrong with me, and I felt that I was so much more knowledgeable than any of them. Sadly, I also had a bad experience with a naturopath in Anchorage. So, it took me another year before I finally found help — out of state. I have since found a great naturopath at a different clinic in Anchorage. I think your post will help many people find hope. Thank you.

  32. Carie says

    Thank you for posting about this. I’m sure it wasn’t easy putting something that feels so private out on the Internet for all to read.
    My Abby has tummy issues, as you already know Megan. She is lactose intolerant and we do our best to avoid lactose but she was having daily stomachaches and the school was calling me almost every day with her in the nurse’s office crying. I took her to a pediatric GI to see if she had fructose intolerance and gluten intolerance. They did some blood work and an abdominal xray and she was full of poop. What I didn’t understand was that she was still popping every day. Sometimes even loose watery stool. Apparently even with a colon packed full, stool is able to slip past. We have her follow up at the end of this month to see how things look after doing a “clean out” and following a daily Miralax regimen.
    After reading about your Abbi’s behavior issues after being glutened I’m beginning to wonder if that has something to do with my Abby’s tantrums. Never once have we given in to her but she still at almost 6 has them on a regular basis. Screaming, crying crazy town up in our house over the smallest things. And after its all done and over we talk to her about it she say she doesn’t know why she behaved that way and she knows it doesn’t work to get her way. It’s like she’s out of her mind.
    It might be time to try going GFCF and see of that helps. I realize I was a little scattered in my reply but I was interrupted several times.
    Thanks again Megan. I’ll keep you posted.

  33. michelle says

    Thank you for sharing that, although Im sure it is painful. It was good to hear that someone elses child has these reactions too. All I have ever read about is the anaphylaxis side of food issues. When I tell people my sons’ food sensitivities manifest as behavioral issues, they look at me funny. You made me aware that there are other families with the same issues out there!! Bless you for that!

  34. says

    Thank you so much for writing this. My son was diagnosed at 15 months. He’s 3 now and I’ve often vented to my friends and about this topic. I’m glad to have another parents perspective who was in the exact same situation. Thanks!

  35. says

    What an amazing story and how brave of you to share it! I can’t imagine how difficult it has been; we hurt when our children hurt, don’t we? I myself have been gluten-free for 6 years due to Celiacs disease and when my son showed a reaction to gluten soon after introducing it we had him tested. I was so thankful when his tests came back negative but that didn’t explain away the issues he was having! We have never experienced the extreme emotional issues you describe but I do notice a big difference in his behavior when he is given gluten and we still can’t explain his very loose stools so we decided to put him on a gluten free diet and see where it goes. Your article was very encouraging. Your daughter is beautiful, by the way; that smiling face made me smile! God bless you and your family.

  36. Ettie says

    Megan Thank you for sharing, what you have described has just opened my eyes, not only to my own emotional roller coaster life but to that of my children as well. we are all dairy intolerant but now I will look into detoxing and going gluten free to help heal both my self and my children, My 8 year old has loose stools on a daily basis and the tantrums and my 5 year old has these unbelievable tantrums.

    I have been praying for help and I stumble across your site while looking for gluten free bread recipes. We had sort of started on gluten free, but DH keeps buying the kids “treats” I will have him read your article for him to understand how important this journey is for us, and I will adopt your advise as to carrying prepared food with us always. Thank you form the bottom of my heart and may God bless you and your family and you help others through your blog

  37. Maria says

    Thanks for sharing your story. We experienced the exact same thing with our now 6 year old. But we didn’t test the gluten effect until about a year ago. Even though everyone close to her has noticed the difference in our girl, there are a few family members who still can’t get on board. Any chance you have since found the article regarding gluten, brain and emotional volatility? Thanks so much.

  38. Leslie says

    I am sitting reading this post sobbing my eyes out. Your little girl’s story describes my three year old perfectly. On top of the loose stools and constant tantrums, our Amelia is constantly fighting some kind of bug. Her little body is always fighting something. I have asked numerous doctors about allergy testing and not one will take me seriously. Finally I took her to a naturopathic doctor and chiropractor they tested that she sensitive to dairy, wheat and egg yoke. I’ve removed those from her diet and already I am seeing improvements to her mood. My heart just hurts at all that she’s been through and all because food. Thank you for sharing.

  39. Evie says

    Wow, this was interesting to read. In October of 2009, I got really sick with swine flu. I was out of school for 2 weeks, constant fever, and after I”got over it” I never fully recovered. I started having extreme anger issues and severe meltdowns. I surprisingly wasn’t having many other symptoms (besides a pretty bad loss of appetite. I was losing weight like crazy from it). I was between 12 and 13 years old, so sure, Mom could have blamed it on hormones, but she had enough. I pretty much had gone AWOL.
    She took me to a homeopathic doctor in March 2010. I remember her being so drained, when we got there, my mom said, “They better find something wrong with you or else I’m gonna beat the devil out of you.” (Not that she was actually serious about beating me. She knew this wasn’t normal.) I found out that I was gluten intolerant, and that I needed to go gluten free. When I did, it took just a week before I started to feel better. I think everyone in my house started feeling better.

    I never knew food could have such an effect on someone, but we aren’t taught these things. In today’s medical world, it’s take a few tests, pop a pill and get over it. It never really fixes the issue. I realize now how much better it is to stay away from gluten (because being the rebellious teenager I am, I haven’t always faithfully stuck to my gluten-free diet) and that it’s always best to get to the bottom of your issues, not just cover up the symptoms. So glad you pursued the truth and stuck with your gut instincts with your child’s well-being.

    If I have kids and they have gluten intolerances, I will definitely keep these tips in mind for the future. :) And it’s really good to know I’m not alone in how gluten affects me! Helps me feel a little less crazy. :)

  40. says

    I am so impressed by your sharing your struggle. And trust me, you did well to figure out the gluten intolerance as early as you did. I have a friend who’s son had an undiagnosed milk allergy until he was well into grade school. Once they figured it out she said, “I finally love my son. Up until now it has been a struggle.” You’re doing a great job! God bless you!

  41. Kathy says

    I had all the same problems with my youngest. In fact, she is now 19 and still acts similar. I had her tested 2 years ago when I found out that gluten can cause these symptoms. We’ve battled ever since. She won’t go off. She has had a more often sad than happy life thus far filled with anxiety, acne, depression, cutting, hospital stays, getting sick often…… on and on it goes. She tested positive through Enterolab (but she doesn’t care). I don’t allow any gluten in my home, and I pray that some day, she will do the right thing. Her older sister and I have been gluten free for 3 yr and dairy free for 1 yr. I hope that my story helps someone who isn’t willing to make the move….my advice is that it is MUCH EASIER to control a child’s diet when they are young. I wish, wish, wish I could go back in time, and realize what was causing her issues. It could make such a difference in her life.

    • Megan says

      My mother’s heart aches for you and your daughter. Thank you for sharing- I’m sure it’s not easy. I will keep you both in my prayers.

  42. Kassandra Paul says

    HI Megan,

    When I saw this, I had to read it. My 6 year old daughter has gluten intolerance, and we only figured it out about a year ago and put her on a gluten free diet. Like you daughter, however, mine is doing better, but there is still something that is bugging her. I never thought about pulling corn or dairy. How difficult is that to find good foods for her to eat that are gluten free, but also corn and dairy free?
    In your list of things to do to help your child when they are going through a gluten reaction, number 3 hit home hard. My baby will just cry and cry, and then burst into laughter, and then bust back into tears. She has 0 emotional and impulse control when she is “sick.”

    This post has been very helpful for me, and I will have my husband read it as well. Thank you very much to writing this. It is helpful to know that there are other families out there going through this.


    • Megan says

      Hi Kassandra,
      Thank you for sharing a part of your journey with me! Finding products that are gluten/dairy/corn free is difficult; I make a lot of our food totally from scratch. It’s more time consuming, but definitely healthier, and provides more relief for Abbi. In the long run it’s totally worth it. 😉

  43. Alicia says

    I just wanted to say Thank You for all you do! It is really nice to see I am not the only one dealing with food allergies. My son and myself have very similar allergies. We are allergic to wheat, gluten, dairy, eggs and soy. There is more but just to much to list. I have known about my allergies for about 9 years, we only found out about my son’s allergies in 2012. We had him tested a couple times a year from 2 up and it always came back negative. So, very frustrating being told everything is ok when it really was not. Especially when you know as a mom something is wrong. He is now 12! The symptoms I see the most in him is the attitude and smart remarks. It is really frustrating when you think to your self, is he just being 12? or is it food? He will also not tell me if his stomach hurts or if he not feeling good because of food. I think he dose this because he dose not want to stop eating what ever it is we thought was ok. This dose not happen often but when it dose he just tells me he is fine. When I here this answer I usually know some thing is up! I am very diligent about our food and making sure everything is what it should be but, some times it just happens. Then we have the job figuring out what it was and then dealing with it. We pretty much stopped eating out because the after affect, is so bad it is just not worth it. I am worried what is going to happen when he is in middle school next year and then high school. I guess all we can do as mom’s is just hope our kids listen and hope they know everything we do is to help them so they can make good choices. Thank you for sharing your life! :) I hope you know all you do is very helpful for everyone reading your posts. You, let us all know we are not alone!
    Thank you so much!

  44. Erin says

    Hi Megan,
    As many others have said, thank you! for this post. I, too, have autoimmune issues I’m working on through a naturopath and dietary changes. And my 4.5 year old sounds like a twin to your daughter, with the gluten intolerance, tantrums, and diarrhea that went unckecked for months because I was so focused on surviving the behaviors and giving attention to his younger sister. Just today I was wondering what (!) could have contributed to a particularly upsetting loss of control on his part. Then I realized we made popcorn for a snack. So, thinking corn free is next on the list. The Lord led me to your bit of wisdom when I needed it. And I’m drooling over your recipes. :)

  45. Jenny says

    Thank you very much for opening up your story to help others! It has helped me to read it. My daughter was diagnosed with Celiac two years ago and we have struggled through the same emotional fits. It’s so hard. I’m interested in why/how corn was the next suggestion when gf alone wasn’t cutting it? My daughter did great for a whole year off of gluten, but for the past four months has had tummy pains pretty consistently. I’m wondering if I need to try removing corn. Thanks for the helpful tips!

  46. Lynette says

    Hi Megan,

    I loved reading your story about your daughter as I have a son with autism. He started vomiting a few years ago on a daily basis for two months and his behavior was challenging for quite some time. He was referred to his GI specialist by his pediatrician. He had the endoscopy with testing of his stomach and intestines to rule out any ailments. He also had a blood test and the results were wheat and dairy allergies but not celiac. We started him on a Gluten and Dairy Free diet right away. It took about 6 weeks to see any results and they’ve all been positive. No vomiting and his behavior has improved dramatically! We do however struggle with family members thinking they know what’s best for him and try to put their two cents in about his diet. I have to put my foot down and it causes fights but they’re not the ones raising him! You are a great mother by the way!

  47. Amy says

    Thank you for this post. Shortly after my daughter turned five, she started having a variety of symptoms including gas and stomach pain, but most of her symptoms were neurological. She was always an easy going kid, but started having emotional outbursts equal to or greater than that of a hormonal teenager. I was fortunate that I have a background in special education and had some good tools at my disposal to manage the situations. Her pediatrician was very supportive in trying to find out what was going on. Her symptoms did not fit what they expected of Celiac Disease, so they focused on the neurological issues and she had a complete work up for neuroblastoma including ultrasounds, x-rays, nuclear medicine studies, MRIs, and enough blood letting for tests to make a vampire happy. Every test came back negative or inconclusive. During one of the last sets of blood work, I asked them to run the test for Celiac figuring that it couldn’t hurt. Imagine our relief when it was positive. Now, over a year later, she is happy and healthy on a gluten free diet. However, despite my best efforts, she will occasionally get exposed. We see those neurological signs creep back in and the complete and utter emotional meltdowns return. It definitely takes patience and understanding. When you are in the midst of the angst and emotional terror, it can be hard to know when to hold them and when to walk away. Every child is different and every episode is different. I love your tips and strategies. I think they hold true across the board. Thank you again.

  48. Jennifer says

    Thanks so much for posting this. Both my 12 year old daughter and I have Celiac and both of us experience serious nastiness, short tempers and apathy when we’re not angry or nasty! This happens even when we do not experience Gi symptoms (cross contamination or something labeled GF but uses the FDA standards). Thankfully, it only takes 24 hours to recover and we load up on B12. I give extra grace and explain that is a huge way for her to know she ‘s been exposed.

  49. Jennifer says

    Thank you for sharing this!! It took is a 1.5 years to figure out our kid has a sensitivity to gluten and dairy! He would self injure with every melt down. We went to sooo many doctors seeking help. It wasn’t till my MIL offered to pay for him to be seen by her chiropractor for muscle reflex testing that we got any help! Even after that I had to bed the allergist for the blood test to know which were sensitivities and which were allergies. It is amazing how much better he is without gluten and dairy. He is back to my “normal” fun loving kid!! Worst 1.5 years. The guilt is real as a parent you constantly wonder what your doing wrong and why this is happening! I had one mom tell me that my kid would grow up to be “a cutter, a self mutilator”. I was devastated! Food sensitivities and allergies are real! I can only imagine if the medical field would stop “being by the book” and worked WITH the natural doctors how many more kids would be healed vs drugged. You spoke right to my mommy heart so thank you for being vulnerable and sharing this very personal time in your life!

  50. Libby says

    Thank you so much for this article! My middle daughter who just turned 8 years old was recently diagnosed with Celiac Disease. Starting from the age of 4 she began to have horrible tantrums. She has always been “our tough cookie.” We have been at our wits end on what to do. Her recent diagnoses of Celiac made me realize it wasn’t tantrums but being exposed to gluten and her having a reaction. Since going off gluten her moods have changed dramatically!! She still has her moments just like any other 8 year old but they are much less and a bit easier to handle.
    This article helped confirm that we are not alone and just how much gluten was really affecting her. Thanks again!!

  51. says

    I am thrilled to discover your website and this personal story. I find comfort in knowing that our family isn’t alone. Our daughter also had wild tantrums until we removed gluten (and then finally dairy too). I’ve written about it on my blog hoping to help other families who might be experiencing the same thing. I think we can learn so much from sharing our personal stories, because most doctors just don’t understand and aren’t educated properly on the topic. I’m so glad your daughter is healthy now! Thanks for sharing, and I look forward to learning more from you.

  52. Meghan says

    Thanks you for writing this. It is really hard to understand that Gluten can have such an affect on your brain unless you have lived it. Maybe more of us should start sharing our experiences? I know if helps me to read about other families that have been through this. It gets so difficult to explain to people around you that your child throws a tantrum that is not a normal one. My son would throw fits for hours just crying and screaming and kicking, over nothing at all. I felt like I was falling as a mother. He was my first child and I kept thinking that it was me, that I was doing something wrong. It was like being in combat with my child everyday. I never knew what the day would be like.

    My son will be 8 this year and has been gluten free for almost 2 years. They have been the best 2 years for my family and my son. I remember clearly after we took gluten out of his diet that one day he started to get upset about something small, and then it stopped. I saw my son calm himself down for the first time.

    People around us always feel bad for Sean because he can’t have cake at the party etc. What they don’t realize is that my son doesn’t even want it. He doesn’t get upset at all not to be able to eat it. It seems to offend other people more. What I think people don’t realize is that my son lived it.

    When I ask my son how he feels not eating gluten, he always says that his brain isn’t crazy anymore. He says he feels like he has control now.

    Thanks again for writing this!


  53. Maruko says


    Thanks for sharing, this is a wonderful article. I have to disagree with one thing though. Abbi is not ‘sick’ …. She is merely reacting to her body rejecting the bad stuff. Im being pedantic I know… Other than that, Abbi is adorable and normal, her being sensitive to gluten or other allergens does not qualify to call her sick. Its our society and it’s eating habits that are sick!

  54. Carla says

    When my son was 7, and was very ill, he was diagnosed with Celiac Disease, this was almost 13 years ago. We turned our whole house GF for him, but my husband, I and later our new son would have gluten when we were out. When we had our second son two years after the diagnosis, we were watching closely for signs of Celiac. This was 11 years ago. There was very little info. On the web still, and the affects of gluten on the brain was not mentioned on most sites. We started noticing some tummy issues and BM abnormalities when he was 3, this was 7 years ago. I discussed it and we decided he would go completely GF like our older son. I went completely GF as well. What we didn’t expect was an immediate affect on his behavior. He had been having violent temper tantrums, and also stopped talking. We never physically disciplined our kids, never let him watch anything violent, we homeschooled, so there wasn’t any possibility that he was experiencing violence anywhere, yet he was having physically violent tantrums that completely disappeared within a week of eliminating all gluten. He is almost 11 now, gets diarrhea if glutened and emotional/moody. I am really careful, so it’s not often, but stuff happens sometimes. One thing every Celiac should be aware of, is that probiotics may not be safe. They did a study recently and found gluten in probiotics, even the ones labeled gluten free! When I went GF, my depression went away, along with many other symptoms. The only way I could deal with him was to walk away and make sure he was in a safe place. I hope this helps!

  55. Michelle Manning-Weill says

    I came across your blog two days ago, during a terrible weekend with my out of control almost 3 year old daughter Amelia. Amelia’s stools became very loose in Fall of 2014. The pediatrician said it was not a worry since she had no signs of malabsorption, etc….she is in the 95th percentile of weight for length, something else that concerns us. In Winter of 2014/15, she started having multiple hours long tantrums a day, eventually lost all interest in playing, would run into everything, and only wanted me. At first we thought she was reacting to having a new baby sister or to being 2….she is our first child so we had no basis for comparison. The doctors (and we went to many due to her size) ran test after test and no one found anything. Our pediatrician eventually told us that there was just no answer, that she would outgrow her food obsession, bowels and size. Thankfully, I continued to search the web and found an entry somewhere from a mom who had taken her child off glutens and dairy. We did it immediately and within a week we had our playful, delightful child back. This was in May 2015. The day after Mothers Day. We should have had her celiac screen done before taking her off gluten…it came back negative but i don’t think that means anything despite the pediatric GI at Stanford assuring me that she couldn’t possibly have it even though the test was done 6 weeks after removing glutens. She does however have 2 celiac genes…one from my husband and one from our ovum donor. We never ever thought about celiac since neither my husband or the donor have it…as far as we know. Amelia has been great ever since (with the exception of almond milk – we think – which had coconut in it…and carrageenan…we took her off it and got immediate improvement) until this past weekend. She got croup (only the second time her entire life she has been sick at all). I gave her Tylenol (gluten free, dye free) to break the fever and she got an oral steroid at the DR on Saturday morning (i asked him to check for any gluten info on the steroid…he thought it looked clean). In addition, she had a few bites of shaved ice at a festival (I asked if GF….my gut told me not to do it….it also had bright red dye and Amelia never ever eats additives) and three pieces of kettle corn (again assured it was GF). She turned into the devil. And I know that you and the other posters here understand. I wish I knew what she is feeling. Does she have a headache, what is going on in her head? She will cry for me and then scream at me to go away then cry when i do. She won’t let me touch her or hug her although she needs it so badly. When I ask her what hurts she screams that she cannot tell me. The other night in the middle of such an episode, after reading your blog and feeling somewhat reenergized, I just held her tight and started crying, telling her that Mommy and Daddy are going to figure out what hurts her, that we know she doesn’t feel well, that we love her. She stopped screaming and writhing and gave me the best, longest hug I have ever received in my life. She still is not back to normal. Very volatile…but lots of happy moments now mixed in with the out of control impulses. She is able to go to preschool and is doing great there. Can someone please help me to understand what she is feeling? Are there things I can do to hasten the exit of the gluten or whatever else it was (the additives and fillers in Tylenol, oral steroids, shaved ice juice, corn?) from her body. We made bone broth today for her consumption tomorrow (how much does she need and how do i get her to consume it). I have ginger so i will give that to her – i saw that as a suggestion above. How do I figure out exactly what it is that ails her…it sounds like a naturapath can run tests on sensitivities? How do I know if the probiotic I have given her since Summer 2014 is good for her or bad for her? I need direction and someone to talk to who understands the tantrums that happen. The winter of 2015 was the darkest days of my life with her issues (tantrums, food obsession, weight issues) and my Mom dying unexpectedly (she had RA and switched from Enbrel to Humira…got sepsis and died within hours…devastating). I told my husband Sunday night that i don’t know how we made it through those dark days. I sometimes feel like I did not….I am definitely not the same person but I think I have been changed for the better. At least I hope so. But I need help from people who have experienced these issues either themselves or with their child. This time, at least we know that we will get our daughter back…I am just hoping it happens quickly. I want her back.
    Thank for sharing , Megan, and everyone else on the post. It brings me great comfort in knowing I am not alone. I am hoping that once I get this figured out for Amelia that I can become a strong advocate for education of Western doctors. I feel like this could have been found so much earlier. The pedIatric GI from Stanford did say that they are seeing CD in more “husky” children but often not until they are in the hospital with neurological disorders. I feel so fortunate that we found this as early as we did. I feel so bad wondering if she has not felt good since birth. But lucky, too, that we now know and can move forward with giving her the tools to deal with her body. I hope she makes the right choices over the course of her life but right now I am focusing on the now.

  56. Dana says

    As I was reading your story, I could hardly contain my emotions. I wasn’t sure if I was going to burst out crying, or start screaming with relief that someone else had experienced the same exact issues! I can’t believe how similar our stories are. My daughter starting having “fits” at 18 months. These were not normal temper tantrums and it was evident that something was drastically wrong. She also would wake up screaming with joint pain, had sensory issues, and chronic constipation (after a week on a GF diet, she was pooping like crazy!!!) I won’t go into the details of our journey, as they are almost identical to yours. But I will say that it was a very painful and devastating experience. We are 2 1/2 years gluten free and I finally have my daughter back!!! I feel like I did not know my daughter for the first 4 years of her life! I can’t begin to tell you how comforting it is to know I am not alone, especially when the majority rolls their eyes at the connection between behavior and gluten sensitivity! I can’t thank you enough for sharing!!!


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