Tag Archives: celiac disease

Tipping the scales


Wow! One month ago, we cut out gluten from Madeleine’s diet. We cut it out because she had chronic diarrhea, was passing undigested food mere hours of ingesting it, was extremely irritable, and had gotten to the point where she was refusing almost all food. At 13.5 months she was the exact same weight she was at 9 months. We didn’t introduce gluten to her diet until she was 9 months old. I explained some of our progress since cutting gluten out a few weeks ago, and here’s another update.

For a week and a half, Maddy was sleeping until 6am consistently! She’s back to her early wake ups, averaging 4:15am this week, but we see the light! My sister just posted about sleep in kids with SPD here, and much of her experience is similar to ours. But, we learned something this month: when Maddy’s dietary and SPD issues are sorted out, the girl can sleep!!

For the last week or so, Maddy has been eating voraciously. She’s still limited in exactly what she’ll eat, and there’s absolutely no mixing of textures…. but she’s finally eating again! The ladies at her daycare said to me this week, “Maddy is one of the messiest eaters we’ve had. She won’t let anyone help her at all. She’s hard to clean up afterwards – she needs a pressure wash!” That is such a big change from hearing that she didn’t eat any lunch several days in a row. I should also point out that the idea of not letting anyone feed her is very consistent with SPD. The more control she has over what goes in her mouth, the less distressing it is for her to have various tastes, temperatures, and textures in her mouth. We’re now back to trying to address her SPD-related food issues and it feels so good to be back to this stage.

We’ve also had two medical appointments this month. The first was an abdominal ultrasound for Maddy, just to rule out any structural issues that could be causing pain or digestion troubles. It was an experience in itself, as Maddy’s appointment was at 10am and she wasn’t allowed to eat until after (though, we cheated and gave her something small at 6am). I felt so badly saying no to her as she asked for food all morning. As you can imagine, Maddy was less than co-operative during the ultrasound (can’t really blame her!), and unfortunately, the ultrasound tech was not the most empathetic of professionals we’ve had to deal with. The appointment ended abruptly with an, “I can’t do this anymore.” It was worth it though, and I’m so pleased to report that everything came back normal.

Our second appointment was with our amazing pediatrician (who comes to our town one day a week and has an outpatient clinic at the local hospital). His advice: you can’t argue with success. If cutting gluten out works, keep it out. He wants to wait and see what the GI specialist advises, but suggested the only variable we try changing again in the next 6 months is dairy. He was taken aback by the strong history of food issues in my family (aw, aren’t we lucky to be Bayntons?), and because of that felt that not attempting to re-introduce gluten until the GI specialist weighs in was the best approach (thank goodness, because that’s exactly what we wanted to hear). He then commented that perhaps Maddy’s multiple protein intolerances were all related to a potential Celiac diagnosis – something we already suspected. Can I just say how much I love this man? He’s so open to our experiences, hearing what we say, and trusting in it. Many of his patients are babies with food intolerances, so he knows his stuff. There’s nothing more satisfying than seeing a professional who trusts and hears you.

The pediatrician also suspects that Maddy had lost weight between 9 and 12 months, as chronic diarrhea will do that to you, but that we just didn’t notice because she had no appointments between those times. Wonder of all wonders… Maddy has gained 2 pounds since we cut out gluten. Two pounds in one month after no weight gain (and potential loss) for 4.5 months?! That just confirmed both for the pediatrician and us that we’re on the right track.

Finally, I met with a dietician that works out of the same office as I do. She has been so helpful, printing out recipes as she comes across them and leaving them on my desk. I have a potato instead of pasta lasagna, a red lentil spaghetti sauce, and some gluten-free breads to try. She also gave us some quick soy protein meals that we can try to bump up Maddy’s protein intake since she almost always refuses meat. I’m so happy that Maddy isn’t reacting to soy – it just makes meal planning a touch more flexible for us.

For the time being we’re back to only dealing with SPD related issues with Madeleine, and it feels great. We’ll leave the food issues alone until we see the GI specialist. What does that mean? It means that Maddy is happier. That means that mommy and daddy are happier, and, from what Mum Farrar has said to me, it also means that grandma and grandpa are happier. It’s a chain of happiness!

Life still isn’t what it might be with a typically developing child, but it’s the life we’ve become accustomed to. Life with an SPD toddler can be chaotic and unpredictable, but we’re still learning and we’re trying to trust that overall things will just continue to improve. I’m learning how to handle (or, rather, ignore) comments by others who suggest that our experiences are “normal toddler” stuff, and we’re trusting ourselves more. Who cares if everyone else thinks we’re whiners? They don’t live with Maddy, and until they do, they have no concept of how atypical some of her behaviour may or may not be. We’re doing the best we can to support Maddy’s development, and if that means we annoy others by saying she’s more difficult than a typically developing child, then so be it.


A complex tapestry


We had a mixed bag of Maddy over the weekend. One day was basically an entire meltdown. We think it was a bit of some teething blues combined with sensory overload from her new week at daycare (for an interesting read on how great days at daycare or school can turn into a wreck of an evening or weekend, check out this article posted by the SPD foundation: The let-down-meltdown). The poor thing’s engine was running so fast, she couldn’t calm herself enough to sleep, or even feel comfortable in her own skin. Eric and I both worked hard at reducing her stress, but it literally took until 5pm before she started to perk up. Fortunately, I was all emotionally charged to deal with a hard day after a long, overdue chat, with my good friend, Jules, the Thursday before.

The next day was with an incredible, amazing, so much fun Maddy. We met some good friends at a nearby Chuck E. Cheese’s for some lunch and play. Maddy loved it – she enjoyed the small rides, and dancing with the mouse (which, 7-year-old Georgia correctly pinned as creepy, haha). Maddy did so well, until the very end when she was clear with us she was ready to nap (which, of course, is typical baby stuff, so that doesn’t even really count ;)).

The third day of our long weekend was spent having lunch with two more good friends, and Maddy had another stellar day. She giggled and giggled watching Loki play with their dog, Charlie. At first she was a bit wary of Charlie, a chocolate lab who is much bigger than Loki, but it didn’t take her long to approach her with no fear. She giggled as Charlie licked her face, and Maddy even laughed when Charlie knocked her on her bum a few times.

We also managed to squeeze in two family visits over the weekend. Our favourite moment was during dinner at Eric’s parent’s house. Maddy picked up the lid to her soy yogurt and started licking it. In the process, she gave herself a yogurt facial. She then turned to me, covered in yogurt, and said, “Nom, nom, nom.” Everyone broke out in laughter. Maddy grinned, wiped the lid on her face, turned to look at the table, and laughed an almost evil sounding laugh. She continued to do this for a few minutes, clearly enjoying the attention she was getting. I know I’ve said it before, but, man, when Maddy is feeling good, she has such a little personality. She just shines, and is so much fun. I am so looking forward to getting to know this side of her much better.

Conversation during parts of our visits made me think that I should share some of the bits and pieces of what I’ve learned this past year from the numerous professionals we’ve been in contact with. Each professional has added a slightly different expertise, and has really helped our family, and maybe it could help one of you, too.

Before I get into this, I should warn you, I’m someone who values both traditional medicine and alternative medicine. I have had success with using the strengths of each to address multiple issues in my life. Additionally, as an Epidemiologist it is obvious that I believe in the importance of research (as opposed to anecdotal evidence). But, I also know that not everything has been studied in research (and frankly, not all things can be studied in that way), and so I don’t close my ears to anecdotal reports, either. Will you find what I’m about to tell you outlined in peer-reviewed journal? Likely not. Regardless, it is pretty interesting.

Let’s go way back to pregnancy. My pregnancy with Maddy, although not the most enjoyable 9 months of my life, was pretty uneventful. I had the typical aches and pains (morning sickness, headaches, back pain, fatigue, etc.), but nothing out of the ordinary. I later learned that there was something interesting about those 9 months. My morning sickness lasted from week 5 until week 25. I had 20 weeks of awful, all day, morning sickness. Twenty weeks where I lost weight and ate little more than bland pasta, crackers, and bread. Twenty weeks of Eric pulling the car over on our daily commute so I could vomit out of the car door. Twenty weeks where I could do little more than lie on a couch, abandoning almost all after work and weekend activities (and where I literally spent hours lying on the concrete floor of my office at school). I know I’m not alone in this experience, in fact, I tracked my sister, Lindsay’s, path almost down to the day. At the time, we just thought we were unlucky. But, is that all that was going on?

From two different professionals:

  • Often women who report more extreme (lasting longer than typical or just plain worse) morning sickness to this professional later discover they have food intolerances. The professional believes that the stress of pregnancy on the body causes an increased reaction to these foods, which is expressed by morning sickness.
  • GI problems like Celiac Disease can be triggered by the stress pregnancy puts on the body (this is also true of other autoimmune diseases that are believed to be caused by both genes and environment). For more information, this article is a good starting point.

Now, of course morning sickness is (unfortunately) a normal part of pregnancy. What I’m talking about here is a more atypical expression of morning sickness.

When I first heard this, I thought, huh, interesting. But, it didn’t stop there. In a consultation with another professional, she asked about my morning sickness. I thought it was heading in the same direction as above… but, it wasn’t. She went on to tell me that in her experience:

  • Mothers who report experiencing more severe morning sickness are more likely to have babies that suffer from colic, particularly caused by reflux and food intolerances. Um, Maddy – check, my Nephew Logan and Niece Chloé – check, check. It is also important to note that some researchers are suggesting that untreated food intolerances can actually cause reflux in an infant, as well. This website briefly discusses the food intolerance/reflux link.

She went on to describe to me why some believe there is a link between morning sickness and colic. In all honesty, I don’t remember the details. It was something about levels of acid in the body. What I do remember, is her take home message:”If you get pregnant again and have bad morning sickness, come see me for some homeopathic treatments to reduce your nausea and reduce the likelihood of another colicky baby.” It might not be research, but after the year we just had, it sure can’t hurt to try.

It is also known that:

  • Mothers who have food allergies or digestive issues (or asthma/eczema) are more likely to have babies with the same issues. Ashley, Maddy… Ding, ding, ding! Lindsay, Logan, Chloé… Ding, ding, ding! This website discusses this link.


  • Babies born via c-section are more likely to have digestive issues (now, this one I knew pre c-section, it was one of the reasons I desperately wanted a vaginal birth given my family history of digestive problems). This is because of the bacteria the baby swallows while passing through the birth canal (that they don’t swallow during a c-section). An article from The Telegraph talks about this bacterial protection.

Now, this gets even more intertwined, as there is a high correlation between reflux/food intolerances and SPD in babies and children (again, Maddy, Logan & Chloé). This correlation is discussed in the book, The Out-of-Sync Child. Some things various professionals have told us:

  • It is believed by some that trauma in early life (e.g. pain caused by reflux, food intolerances, an injury) can often trigger SPD as a way to deal with the constant painful sensory input. You will find on this site that “has allergies” is included on the list of what causes SPD.
  • The healthier the gut, the better the symptoms of SPD (the same is true for other neurological issues). An interesting video on the link between Autism and gut health narrated by David Suzuki can be found here: Autism Enigma.

Now, it is important to remember that food intolerances will cause a gut imbalance (too much bad-gut microbes, not enough good-gut microbes). In other words, it causes an unhealthy gut.

Morning sickness and undiagnosed food intolerances in the mother can increase the likelihood of food intolerances in babies. Food intolerances in babies can simultaneously trigger reflux, unhealthy gut, and/or neurological disorders. The symptoms of neurological disorders can be worsened by an unhealthy gut. It’s all a complex tapestry.

If anything, I should be thanking my wee little Maddykins for cueing me into my own digestive issues. Perhaps without all of her struggles, I would still be completely unaware that I have Celiac disease. I only hope that all of this knowledge I have collected will help if and when we choose to chance fate with another babe, and prevent that little one from going through what Maddy has had to.

One more long commute


We are celebrating around our house this week. We’re not celebrating a special birthday or holiday, but a change in our routine. A really, really good change.

Starting this Wednesday, Madeleine is starting at a new daycare that’s five minutes from our house. No more long commute for Maddy, and no more long commute for Daddy. Maddy still has one more to go on Tuesday, but the end is in sight.

In true Maddy styles, she didn’t want to let Daddy off too easy. She went out with a bang last Thursday when she pulled a cousin Logan – she cried so hard on the way home she threw up. It was truly a special moment. When they arrived home, Madeleine’s little face was swollen from all of her crying. Poor little bug. It took us an hour and a bit to calm her down enough to eat dinner.

We’re a tad bit nervous about the transition, as she’s doing so well at her current daycare (and they take such good care of her). But, we figure she’ll transition into her new place with time, and it’s so much better for her to not have to suffer through the long commute with her vestibular issues.

I have so much other news to share with you about Maddy’s past week and a half. Since cutting out wheat, she is so, so happy. I mean, she still has typical baby crying and the like, but it’s all typical. Her loose stools are a thing of the past, and we no longer see all of that undigested food. She’s even started sleeping through the night, until about 6 or 6:30 in the morning!! Eric and I are so happy that we now remember what it’s like to get a full nights sleep on a regular basis.

She’s also become very, very chatty. It is a joy to see as she was falling a bit behind with some of her speech and language milestones. She giggles and smiles and plays again. She’s even started getting into things. We have never really baby-proofed the house, because Maddy never did anything. But, now that she’s feeling good, she’s walking more, playing independently, and opening drawers and cupboards. Horrah!

Another change that has made our life a lot easier, is now she’s letting us use our therapy techniques to address her sensory issues. For awhile, she would not let us do anything with her. But, with a settled tummy, it has become an easy part of the day.

And, finally, maybe the best news I have: she has started eating again. In the short time since we’ve cut wheat out, she’s already gained a few ounces (the first weight she’s gained in almost four and a half months). We’re hopeful that she will continue to gain weight, and her fall off of the growth chart will no longer be a concern.

We finally have the little boo we saw a glimpse of post-therapy-pre-wheat introduction. It took us a long time to even recognize the decline, as it was so gradual (and a fall into her pre-therapy ways that we were so used to). We’re so lucky that we were able to figure this out, and we hope these positive changes are around to stay!

I hope everyone else is enjoying their weekend as much as we are!

Oh, what a difference a week makes


Last weekend was a terribly low, emotionally draining, frustrating, and saddening few days. I was feeling at my wits’ end.

Today was the easiest day we’ve ever had with Maddy. No hyperbole.

What has happened in between?

It has been exactly one week since we cut out gluten from Maddy’s diet. As I mentioned before, this meant that most of what Maddy would eat, and what we’d spent three months working on getting her to eat, was suddenly gone from her diet. For three days all she ate was fruit, granola bars, and goat milk. She was miserably hungry, but refused to eat. She was going to bed signing ‘eat’, and signing ‘more’ while crying, but there was nothing we could give her that she would accept that would fill her little tummy up.

Despite being miserably hungry, her poopy diapers became solid again (she previously had been passing completely undigested food two hours after consuming it, up to eight times a day). This was our first positive sign that cutting out gluten might be helping.

Jump forward several days, and we have a little girl who is trying foods we have never seen her try before. She not only put pork, beef, tuna, and chicken in her mouth, she swallowed them, and went back for more! She also tried tabouleh, peas, carrots, red pepper, and potatoes. This is our second positive sign that she might have had an upset stomach for a long while now.

Every day this week seemed to get a little bit better. She was still crying a lot, but her moments of happiness seemed to be increasing. She started showing independence again, not needing to be attached to us. She started wanting to walk instead of always wanting to be carried. In fact, she walks now more than she crawls, and she’s gotten to that stage other parents have told us about (the I-want-to-walk-everywhere-and-will-throw-a-fit-if-you-pick-me-up stage). A woman approached us today in a coffee shop, asking how old Maddy was, and then commented on how she was such a, “good walker for her age”. Rewind to last weekend when she would barely even bear weight on her legs. Whose kid is this?

Her sleeping hasn’t improved substantially, she’s still a wake-up-at-4:30am kinda gal. But, she is sometimes able to cry herself back to sleep for another hour or so. Let me tell you, that extra hour makes a world of a difference (and I don’t mean for Madeleine, I mean for us!). What has changed substantially is the way Maddy has been waking up. Three times in a row now (knock on wood), she has woken up saying, “Uh oh” while looking through her crib rungs at her soothers on the floor.  Never, in her little life, has she woken up so pleasantly three times in a row. Most of our days start with blood curdling screaming. Most naps end the same way, not to mention that her transition from sleep to awake often takes 45 minutes. Today? Madeleine woke from each nap happy, chatty, and she transitioned seamlessly. How have we interpreted this? It’s a lot more pleasant waking up when you’re not waking up to an upset stomach.

All this being said, Maddy will be having an abdominal ultrasound, as well as an appointment with a pediatric GI specialist to rule out (or possibly diagnose) any issues other than a simple food intolerance. Given the family history, and Maddy’s uncanny Celiac-like symptoms, we’re placing bets on Celiac disease… but we’ll just have to wait to see if we’re right.

The upset stomach/food intolerance/gluten removal is just one part of this story. The other part of the story is that Maddy has SPD. It’s really hard to meet her sensory needs when she’s already miserable from an upset stomach. She won’t let us use our OT techniques to navigate through the day. Combine the two together and it’s a big tangled mess of baby gone wild.

Today Maddy was happy. She did not seem at all like her stomach was bothering her. Her normal protruding, and bloated tummy was flattened. She was happy, and so we were able to do things. She played while I swept the floor (and let me tell you, I think this is only the second, maybe third time she has let me do this). She danced outside to music while she watched Daddy get our bikes prepped for our first ride of the season. She even let us put her helmet on her:

We met up with her Uncle Scotty, tucked her into her new bike trailer, and went for a ride around Hamilton Bay. We weren’t sure with Maddy’s vestibular issues how this would go down. She was either going to love it or hate it. What went down was fascinating. In retrospect, we wish we had video taped a bit of it. While we were biking, Maddy entered a catatonic state for 10 kms. She lowered her head a bit, lifted her arms (the way you raise your arms, parallel to the ground in front of you, when you lose your balance and think you might fall), and didn’t move a muscle. She was completely non-responsive to our voices, her name, and even our touch.

When we stopped moving, we took her out of the trailer and sat her on the ground.

She was still completely unresponsive, but now her body was entirely limp. If you picked up her arm and let go, it would flop back down without any resistance. She sat like this for another ten minutes or so. Eventually she started noticing her environment, she stood up, pointed, and called a goose a puppy.

This reaction to movement was not a shock to us. We have seen it many times in her therapy sessions, but I think the longest we’ve seen is a few minutes. As one of my facebook friends succinctly put it, “Her little brain is rewiring itself.” Now, just to give you an idea, it is normal for all children to have these frozen moments when their body registers a new motion (check out the kids at the park the next time you’re there). What distinguishes a child with SPD from a typically developing child is the length it takes for them to register the motion. Today’s bike ride was one for the books: 10km long bike ride, and post-10 minute rest in order to register the motion.

While we were waiting for what we were referring to as our “strung out” babe to come to, we discussed how it would either be meltdown central, or baby bliss depending on whether it was over stimulating, or just right stimulation for Maddy. Wouldn’t you know, baby was blissed out the entire evening.

Today is the first day Maddy has seemed happy from start to finish. I mean, she’s still a 13 month old and she fussed and cried a bit, but she fussed and cried about completely typical 13 month old things, like being put in her car seat, or picked up when she wanted to walk, or when we took away that pebble she was trying to eat.

I have never had such an enjoyable, pleasant day, end-to-end with our little boo-boo. We really think we’ve hit on something. We think that the combination of gluten and SPD is perhaps the mixture that was so confusing and difficult for us to figure out. Only time will tell, but if this week means anything, we’re definitely on the right track!

What does it feel like to be Maddy’s mama?


I’ve had a very down few days. After cutting wheat out of Maddy’s diet, she has only eaten fruit and granola bars (maybe a total of 300-400 calories of food each day). She has cried and signed for food all day long, but spit out everything we tried to give her. Two nights in a row I’ve put her to bed crying while she signs for food. It just breaks my heart knowing that she’s sad and hungry, but not being able to give her the feeling of fullness. My saving grace is that I’m still nursing her, and so I’ve gone from 2-3 nursing sessions a day to 5-6 to help compensate, and her goat milk intake has increased substantially.

This new hurdle has brought back some of my early feelings, but it is also bringing up some new ones. Last night I sobbed as I read an article Eric found online – you can read it here. For the last few days I’ve felt like I’ve been trapped in a bad dream – a dream where nothing I do can help to make Maddy a healthy and happy baby for longer than a month or so. I feel like I’m perceived as “the crazy mom” who is dreaming up new issues for Maddy to have, out of anxiety or first time mothering. I feel as though my search for an answer continually brings up new issues or potential diagnoses, and people just don’t believe that Maddy can have that much going on (and in fact, I feel often that people think she’s completely typical, since her issues cannot be seen on the outside). If I hear, “my kid does that too” one more time, I’ll scream. Why is it that other parents feel the need to impress upon me that Maddy is no different or no more difficult than theirs?

But, the thing is, I know I am not dreaming these up…. and her issues are all interrelated. I know Maddy, better than anyone else knows Maddy (okay, Eric runs a very close second… and only because he didn’t get all that special at-home time I did during my maternity leave). So why does it bother me so much what other people think?

My low point of the weekend was celebrating the first birthday of our good friend’s little guy. I was so happy to be there and share that special moment in his life, but it was so hard, so very hard, to watch him be happy. He played, ate, giggled, and was happily held by people other than his two parents. In particular, it was a stark contrast to Miss Maddykins first birthday celebration.

Maddy spent the majority of her buddy’s party in a grumpy, bear-like state. She sat and whined by herself. Did not engage at all with the other kids, except for a few short bursts. She scowled all day long. The only way we could keep her happy, was by holding her in the exact way she wanted to be held. She didn’t eat… except for 6 raspberries and a few bites of a granola bar.

While we were at the party, people commented that Maddy seemed happy and seemed fine. It’s so interesting to me that people saw her that way. Maybe it’s because I know what Maddy looks like happy, or because I know exactly how to hold her to make her appear happy, but she was not happy. Not by any stretch of the imagination. When Maddy is happy, she leaves our side, she doesn’t need constant comfort from us. She explores and plays, and is quite interested in motoring around. She’s vocal, very vocal. She smiles and giggles. She doesn’t whine and cry and immediately want to be held when she sees me.

On the one hand, I’m so happy to see the other babies in our life that we love thrive. We love to watch them smile, explore, and play. But, it always draws up a mixed bag of emotions in me. It makes me question what more I could do to help Maddy feel that way. It makes me wonder if I have caused some of this (even though the network of professionals that surround us are constantly reminding us that this is who Maddy is, not who we’ve made her). In fact, the amazing professionals we see on a regular basis frequently compliment Eric and I on our creative solutions, on our flexibility and patience, and our willingness to put Maddy first. Why is it so hard in tough moments to remember those things?

I’m constantly reminding myself that everyone has their own battles to fight, and this just happens to be ours. But, I can’t help but wonder why we have to experience this? What in the world is this supposed to teach us? I thought we had learned a lot of tough lessons this year, so why do we need to learn more? The continued struggles have me really questioning if I will be able to do this again. I don’t know if I’m going to be able to survive another baby if it is going to look and feel like this.

So what does it feel like to be Maddy’s mommy? Painful, rewarding, scary, hopeful, draining, tiring, exhausting, amazing, confusing, frustrating, angry, unfair, incredible, challenging, and sometimes even fun.

Now, I need to leave on a positive note, so I’ll share one of the blessings this experience has given us: the very apparent, strong, and supportive network we have surrounding us. I have so many people to talk to, that I never feel like I’m stewing over these feelings. So many people not only listen to me, but hear what I’m saying.

I had a really nice conversation last night with an old roommate of mine. Her (and her hubby’s) struggles happen to be difficulty conceiving. We’ve talked about our issues before – surprisingly we’re able to unload on one another despite the fact that I’m telling her how hard it is being Maddy’s mommy and she’s telling me how badly she wants to be a mommy (and I know that one day she is going to be one truly blessed and amazing mommy, no matter what shape it takes). I’m so thankful that she’s able to understand and be so supportive when what I’m saying is probably the last thing she wants to hear. I’m glad she’s able to understand that though our struggles are different, they’re both painful. Thank you – you know who you are!