Sunday Surprise - #2

So, once again, it's rather late, but it's still Sunday!  Today's been a surprise in and of itself around here.  We've spent the bulk of the day in a very unexpected way and we're all exhausted.  I think I will keep things very short and sweet this week.  (Hard to believe I can actually keep an entry short, but here goes. . .)

One might be surprised to know that the term "non-dairy" does not necessarily mean that the item does not contain any dairy components.  Unfortunately, the term "non-dairy" was long ago hijacked by the food industry to describe items which did not contain lactose, a milk sugar.  For many of us, milk proteins such as casein and whey are the more problematic components of dairy, not lactose.  

Most non-dairy creamers, cheese products, yogurts, etc., that I have seen are not fully free of dairy/milk components. They often contain milk protein(s) such as casein and/or whey. 

I imagine that some people who decide to do a trial of a dairy-free diet (for themselves and/or their child) may not realize that non-dairy does not necessarily equate to dairy-free or milk-free or casein-free.  When they do not notice a change for the better, they may erroneously conclude that dairy was not the culprit behind the symptoms they were hoping to resolve by going dairy-free.  

I also know a lot of well-meaning and very considerate parents who have wanted to offer my children a dairy-free alternative at birthday parties or other gatherings, but have ended up offering a "non-dairy" item that is not free of milk protein.  

So, if you are trying to eliminate dairy or are kindly trying to accommodate a friend's casein/milk-free diet - beware the misleading term "non-dairy."   It would not be a surprise to find casein, whey, or other milk proteins in a product labeled non-dairy.  

Arrggh! Gluten! Or was it casein? Maybe it was soy.

Maybe it was a combination, I have no clue right now.  What I do know is that I'm tired and I'm grumpy. Not the best way to start a post.  

But, I hope to help people understand why I won't give in to just a little bite of this or a tiny smidge of that when it comes to our dietary modifications.  Why I won't just "indulge" once in a while.  Some people have even rolled their eyes at me over this issue, particularly as it relates to the Os.  I get the sense that they think I'm depriving our children of some fantastical version of childhood in which a birthday party without ice cream cones and birthday cake is tantamount to child abuse.

Yes, it would be a LOT easier to not adhere to our dietary modifications.  Heck, it would be  lot easier if we followed only our dietary modifications most of the time.  It would take a lot less planning and cooking and packing for a day at the beach.  It would take a lot less time figuring out clever ways to help my children feel confident about their food choices as they watch their friends eat cheesy fish-shaped crackers and cups of yogurt.  It would take a lot less creativity and energy in distracting them with our own snacks at the library story hour instead of letting them grab a bag of crunchy-munchy-sugary-gluten-thingies like the other kids.

I'll digress more into how we got to our current dietary modifications in a post soon - when I'm out of this food infraction induced haze - but for now, let me share with you a few of the reasons why I will not budge on our dietary restrictions.  

Here are some of the symptoms we can experience after a food infraction:

Little O

• Quite foul and seemingly painful flatulence.
  
• Gastrointestinal distress, including acid reflux, manifest by his writhing and restlessness and the gurgling (boiling?) sounds in his abdomen and throat.
  
• At least one sleepless night with intermittent crying and constant restlessness. Often multiple restless nights.
  
• Constipation.  This kid poops like clockwork - nearly to the hour each day.  When he misses an event, I know we've had one of our banned foods (if, by some miracle, we didn't already spend a sleepless night prior to his skipping a bowel movement).  When he finally does pass a stool, it is painful and much harder than his typical stool.  Often less volume of stool as well.
  
• Scaly scalp.  Some would still call this cradle cap at age 2, I call it "Dammit - we got glutened again!" 
• Patchy red rash. Sometimes on his torso, sometimes on his bottom, sometimes his inner thighs.  Sometimes multiple locations.  The photo below hardly does it justice, but I am a novice photographer and cannot seem to get the settings to align such that the camera can capture the raging redness of the thousands of tiny bumps across his torso.  Maybe it's eczema or other dermatitis.  I don't really care the exact diagnosis because I know it is directly related to a food infraction.
  
  

Big O

• Excessive and foul flatulence.
• Constipation rears its ugly head and can result in a big set back.  He can be sent into the downward spiral of withholding, which can take us weeks to recuperate from.
  
• Cranky, irritable, moody, and at times, tantrumy.
  
• Restless at night.
• Frequent urination; cloudy urine; urine pH is off.
• Night-time bed wetting.  He's 4.5 years old and has been able to stay dry all night for some time now.  I can confidently say that when he wets the bed (our bed. . .) it nearly always correlates to a dietary infraction.
• Nasal congestion. (His persistent nasal congestion disappeared within a week of our eliminating gluten (we'd already been casein-free, egg-free, and soy-free at that point.)
• Mild rash/dry skin on his torso.
• Tiny ulcers in his mouth.
  
• Grinds teeth at night.

Mom (that's me)

• Fatigue.  Extreme fatigue.
• Mental 'fog.' Haziness. Difficulty concentrating.
• Fatigue + mental fog = irritability
• Headache; sometimes migraines
• Digestive discomforts not unlike what the Os experience. 
• pH imbalances
• Acne flare up.
• Depending on the degree of the infraction a cold sore or mouth ulcers may develop.
• Grind teeth.
• Aches and pains, particularly in joints - though this reaction has thankfully diminished excessively over the past year.  This recent infraction has left me with achy knees, but nothing like the total body ache and discomfort I would have experienced a year ago after an infraction.

I am certain these are not the most severe reactions relative to what I've read some children and families endure.  I am thankful each day that we figured this out while the Os are still so young and perhaps spared them some further complications and/or more severe reactions.  

But can you imagine what Little O's skin would look like if we didn't know gluten, casein, and soy cause him to break out in this red, irritating rash?  If we stopped modifying our diet, I'd bet his skin would become more irritated, drier, and more painful. Doctors would probably recommend various drugs, steroids, and chemical-laden creams to slather all over him. Who knows how many hundred of dollars I would have spent in vain trying to find the most natural creams and oils to soothe his dermatitis? 

No thanks.  We can handle the elimination diet.  The Professor is becoming more supportive and has begun to (I think) better appreciate the ramifications of even a minor infraction for the kids.  My close friends are very considerate and thoughtful - they indulge my frustrations and complaints from time to time when I do get frustrated with our diet and they are always figuring out how to offer the Os foods that fit our modifications.

It is times like this, when I see my children experiencing pain and discomfort that I renew my commitment to the diet, I tell myself not to complain about the difficulties we sometimes face due to the dietary modifications, and I remind myself of just how much better we all can feel when we eat right for us.

Sunday Surprise

It’s a little late, but it’s still Sunday! So here it is – the first “Sunday Surprise” at The Science Mom.

When I first began an elimination diet while breastfeeding Big O, I was entirely unaware of the many secret sources of certain food allergens. (A bit more on that story here.) I remember thinking I’d miss having cream in my coffee – but wait! There’s that powdered non-dairy creamer stuff – I’ll just use that. Then I thought a little more about it. Hmmm, just what the heck is in non-dairy creamer if it is not made from milk or cream? To my surprise, a quick scan of the non-dairy creamer label revealed that, in addition to many ingredients I’d rather not ingest, it indeed had casein, a milk protein, in it.

It was infuriating to think that something could be labeled “non-dairy” if it actually has a milk protein in it! As I began to scrutinize other ingredient labels, I realized there were a lot of unexpected and, sometimes hidden, sources of food allergens.

I’m starting a “Sunday Surprise” entry here each week. I will post information about surprising sources of food allergens – like gluten, milk/casein, egg, soy, corn, etc. I will probably never be able to detail all the hidden food allergens in foods, drugs, and supplements, but, I hope that by sharing a little each week in the Sunday Surprise, others might avoid an unexpected set back due to accidental food allergen exposure.

This week’s “Sunday Surprise” is (drum roll please. . .) soy sauce.

Of course, it is not surprising soy sauce contains soy (which is a problematic food for some of us). But did you know that soy sauce generally contains wheat, and therefore, gluten? Most experienced gluten-free dieters are aware of this. Personally, I was very surprised to learn that soy sauce typically contains wheat/gluten. Wheat-free soy sauce is available (e.g., tamari), but labels must be carefully read to ensure you’re getting a wheat/gluten-free soy sauce. The ingredient list on snack foods that may contain soy sauce (e.g., some versions of rice crackers and Asian-style rice snacks) need to be carefully scrutinized as well.

Another surprise about soy sauce is that it is used in unexpected ways in restaurant cooking - and I’m not talking about just at Asian food restaurants. When we eat out, I ask questions, make special requests, and ask more questions. I research on-line menus and ingredient statements. Of course, looking at a restaurant’s ingredient statements will likely cause anyone to think twice about ingesting the “food” at some establishments – fast food and chain establishments having some of the most, shall we say,  frightening interesting ingredient statements (see, e.g., my first TSM blog entry).  

Back to soy sauce. In my experience, I have found that we can often find foods that meet our requirements at Mexican food restaurants. However, I have also found that soy sauce is used a lot in Mexican food restaurants. Many Mexican food restaurants I’ve been to in Southern California do use soy sauce in their meat marinades – for fajitas, carne asada, etc. You must, of course, ask the right questions to find this out – asking simply about gluten or wheat will not necessarily reveal soy sauce. A lot of people (like myself pre-gluten-free) do not realize soy sauce has gluten in it. For us, we are avoiding soy, too, which is how I’ve come across so much soy sauce usage in Mexican food restaurants.

Really, any restaurant food that is marinated might contain soy sauce in the marinade and it is well worth it to ask about the specific ingredients of the marinade. Even non-marinated items, like a hamburger patty, can contain soy sauce. It’s been surprising learning about restaurant food ingredients – surprising indeed.

So there you have it – the first Sunday Surprise at The Science Mom!

A (science) Mother's Intuition

Four and half years ago when Big O was born, I would have never imagined that something so seemingly trivial as regular bowel movements would be a major achievement and thrill for us.  But, here we are – celebrating each BM and working daily to keep his (and Little O’s) bowels happy.

It was not an easy path.  It was not a clear path.  Looking back, there are things I would take back and a lot of things I would have done differently.

The bribes. . . If you consume this [nasty concoction of smashed senna tablets and honey that I can barely touch to my tongue without vomiting], you can watch a video at bedtime.

The frustrations . . . How can he still hold it in after a glycerin suppository?!  After a second suppository????

When a toddler goes 13 days without pooping (pardon my ‘potty-mouth’) and starts yelling at his belly – “POOPIE STAY IN!” – it is a stressful time for the whole family.  When he screams and cries as the stool finally passes, it is a heartbreaking moment for any parent.

Until having a chronic and severely constipated toddler, I never fully appreciated how the term “anal retentive” came about.  I would laugh along with pals about an “anal retentive” friend who just had to have something a certain way or they became overtly distressed.  I would joke with classmates about an “anal retentive” professor to relieve frustration with the unrealistic assignments or expectations.  I never once thought about the actual origins of the phrase. 

Now, I know.  Someone who hasn’t pooped in several days to weeks is really irritable.  They are fidgety.  In some cases, they are obsessive compulsive and want to control things around them like they want to control their urge to poop.  They are sometimes completely irrational and unreasonable.  Especially when they are only 2.5 years old.

The two weeks without a poop incident was when our pediatrician recommended we give Big O a laxative named Miralax™.  This triggered a strong “mommy intuition” reflex.  I could not just give my kid some drug whose chemical name (polyethylene glycol (PEG) 3350) implied that it was a polymer of a highly toxic chemical - ethylene glycol (i.e., antifreeze) - without fully researching and considering the options.  Polyethylene glycol is not actually ethylene glycol, or antifreeze, but I needed to know exactly how different it was and what studies had been done to determine its safety for use in childhood constipation.

Having regretted not listening to my ‘mommy intuition’ in the past – I was determined to thoroughly investigate this drug and the options for severe chronic childhood constipation.  I was fortunate to come across this site early in my research, which led me to this online support group.  After posting an introductory message and reading some of the message archives, I quickly gained enough knowledge to feel confident in trusting my intuition which told me that I should not give my child this chemical.  I found many kind-hearted, supportive parents at the Miralax group and got lots of ideas for alternatives to PEG 3350 to start me onto more research.

I called our pediatrician, expressed my concerns and told her I would like to try supplemental magnesium instead of Miralax.  She was understanding and supportive.  

Thus, we embarked on our nearly two year journey to regular, comfortable, and "normal" (oh, what is normal anyway?) bowel movements from Big O.  Supplemental magnesium was just the beginning.

Knowing what I know now, we could’ve gotten where we now are a lot more quickly.  I hope that sharing our experiences in defeating chronic childhood constipation will help other children and their families resolve their constipation battle more rapidly than we did. 

Stay tuned, more of our story will be posted here at my blog.

p.s. – Please be aware that I am not a medical practitioner and am not offering any medical advice.  The information provided in my blog and at my website is for informational purposes only.