Our Celiac Story

So one of the things that has caused so much change in our household over the past year is my son’s health.  Here’s the story – if only to help another family who might be going through the same thing.

In the Spring of 2013, my (then) 9-year-old started complaining of stomach pain, pretty consistently although not daily.  However there were no other symptoms – just pain.  In July he had a check-up in which his pediatrician could find nothing wrong.  In September he had his yearly physical, still with occasional complaints of stomach pain.  The pediatrician suggested we try a dairy-free diet in case he might be lactose intolerant.  We did that and there was no improvement.  Around October, the complaints of stomach pain were nearly daily and a new symptom was added – severe anxiety.  About stuff that was normal for our family – going out to eat, traveling in the car anywhere more than 15 minutes away, going to Grandma’s house.  If we even suggested doing any of these things he would either throw a temper tantrum or just get really upset and cry.  We didn’t know how to handle this and did the best we could.  Because there were no actual physical symptoms, we really thought it was a behavioral issue.  By January, the stomach pain and anxiety were extreme and interfering with our family’s daily life.  I really started to wonder if the pain and anxiety signaled a psychological problem.  However, I also noticed that when he returned to school, his adjustable-waist pants needed to be tightened -which I knew wasn’t a good sign but thought it was just because he’d been picky about eating.

So back to the pediatrician we went.  He had lost 6 pounds since his appointment in July (which is a lot for a 10-year-old who only weighed about 65 pounds anyways!).  The pediatrician ordered some blood tests and we got results a couple of days later that his antibodies were elevated – indicating celiac disease.  The pediatrician recommended we put him on a gluten-free diet and set us up with an appointment to see a gastroenterologist.

We put him on a gluten-free diet right away and saw improvement within a week.  Less pain and the anxiety nearly disappeared.  Amazing!  I was so thankful!  I started to do research online about celiac disease.  As an auto-immune disease, it is closely linked with Type 1 diabetes.  Both Dave and I have extended family with celiac, and as you know we also both have diabetes in our families.  The other interesting thing I found out was that canker sores are a symptom of celiac disease.  My son had had very frequent canker sores for about 2 years prior to this!

It took two months to get in to see the gastroenterologist and my heart just broke when I heard what they said.   They told us that he would need to be on a gluten-containing diet for TWO MONTHS prior to an endoscopy and small intestine biopsy in order to accurately diagnose celiac disease.  Now, I had seen in my research that a gluten-containing diet was necessary (and in fact I had called our pediatrician to ask about this but they said it shouldn’t matter (wrong!!)) but I thought they would say maybe a week or two.  And my son had been doing so well on the diet that I really didn’t want to put him back on gluten until it was necessary, and I thought one or two weeks we could handle.  But TWO MONTHS???

And, not to mention, this is a 10-year-old we were talking about.  He knew enough about what had been happening that he wanted no part of going back on a gluten-containing diet.

So I made a hard choice, that at the time I felt like my only choice – to try to sneak some gluten into his diet.  Because I knew he would just refuse to eat if he thought something had gluten in it.  And let’s face it, you really can’t make someone eat something.  So this is what I did for two months and it was awful.  A new symptom arose – headaches.  Daily.  The canker sores came back.  The stomach pain came back.  Not to mention the guilt I felt for giving my child something that I knew was making him feel sick.  Ugh.

Fast forward to the endoscopy / biopsy – it went smoothly.  However, the results came back with no small intestine damage and so they couldn’t diagnose celiac conclusively.  It was such a disappointment!  We left the gastroenterologist with a recommendation to put him back on a gluten-containing diet for 6 months and then come back and retest.  CRAZINESS!

After a long conversation with our pediatrician (which included my disappointment in his recommendation to immediately go on a gluten-free diet prior to diagnosis), we decided to move forward with treating as though he has celiac.  We also got genetic testing done, which confirmed that he has the gene for celiac – just another part of the puzzle.  I feel that the positive antibody testing at three different times, the genetic testing, the family history, the symptoms, and the improvement we see on a gluten-free diet is enough evidence for me that he has celiac – even though a positive biopsy is the gold standard for diagnosis among the medical community.  He is currently on a gluten-free diet and rarely has stomach pain / headaches / canker sores although anxiety is still a part of his life.

Looking back, although I am definitely disappointed in not having an actual diagnosis (honestly, I am concerned about things like college – without a diagnosis will we be able to require them to provide GF meals??), having that period of having to eat gluten again was probably good for my son because he is super-compliant with the diet now.  At first he was not cooperative – didn’t want to eat GF stuff – as soon as the gastroenterologist told him he HAD to eat it for 2 months, he didn’t want to touch it.  Reverse psychology??  ha!

The lesson we learned that I’d want to share with other parents is this – if celiac is possible – do NOT just “try” a gluten-free diet!  Get the testing done first!

Here is a link to my favorite celiac disease resource if you want more info:  http://www.cureceliacdisease.org/

And an infographic of celiac disease symptoms, thanks to http://www.glutendude.com

December 2014!

Christmas is two days away!

Today we are finishing up our preparations… wrapping the last of the gifts, making the last of the cookies (peanut butter balls), and all that good stuff.

Here’s what we’ve been up to this month:

We’ve had a rough December in terms of busy-ness and sicknesses, so we’re also doing a lot of resting, too!  This weekend we took it easy and pretty much watched Christmas movies all weekend.

It was a good weekend – probably because I had zero expectations of it.

Unlike last weekend.  One of our advent activities was to pick out a child to sponsor through ICCM.  We’ve been wanting to do this for a while and I thought it would be a great way to celebrate Christ’s birth.  It didn’t go at all like I’d planned.  (ooh – those expectations we have in our heads are so sneaky!)  I guess I thought it would be a truly meaningful family moment – and it was anything but.  We still did it, but the kids were being silly and totally not taking it seriously.  It made me angry and one of them was in time-out before it was over.

And today the littlest had a doctor’s appointment – diagnosis cold with a side of ear infection.  Not exactly how I’d expected to spend today.  But more snuggling and resting is okay, too.

In the midst of all this I thought of the Christmas devotion I’d done at MOPS a couple of years ago.  And realized I needed to hear it again.

Maybe you do, too.  Here’s the good part:

 Are you trying for the perfect Christmas? And don’t get me wrong – I get caught up in it, too! But God keeps reminding me that the only perfection I’ll find on Earth – the only perfection that you’ll find – is in Jesus. He was, and still is, the perfect gift and the reason we celebrate!

Jesus was referred to in the Bible as “Immanuel”, which means “God with us”. God gave us His son as a gift – the gift of His presence in human form. He is present (no pun intended) with us at all times.

Jesus, the Messiah, was born in a dirty stable when people were expecting a King with all the trappings.

But God is more concerned about what people need rather than what they expect. And He is not afraid to come into the mess of our lives – our dirty stables.

Despite your efforts to create the perfect Christmas, what kind of messes do you have in your life?

The good news is that God’s perfect gift is still available to you. Immanuel – God with us. Isn’t it amazing? The God of the universe is willing to give up the majesty of heaven to be with us in our dirty stable. And he is big enough to deal with whatever mess we’ve made – but not too big to care about it!!

So what do you need this Christmas? Instead of chasing after the perfect Christmas, I challenge you to chase after the “perfect gift” – Jesus. He is, in fact, regardless of his birth in a dirty stable, all the things that Isaiah prophesied.

Do you need guidance on how to get out of your mess? Well, Jesus is the wonderful counselor.

Do you need peace to get through? Jesus is the Prince of Peace

Do you need the impossible to happen? Jesus is the mighty God.

Do you need hope? Well, Jesus is also the Savior and light of this world. He is the way, the truth, and the life.

All you need to do is not miss it.

(here’s the original post, if you want to read all of it)

Merry Christmas, friends!  Praying for all of us that we don’t miss Jesus this Christmas.  

 

 

Back-to-school Teacher Gift

I’ve got a quick, cute back-to-school teacher gift for you!

back-to-school teacher gift

Get yourself some school-themed scrapbooking paper, some white cardstock, ribbon, and a frame.

Go to this awesome blog to print out the art for FREE!  (Thank you, bitsycreations!)

Put it in the frame and dress it up however you like, and there you have it – another quick & easy gift!

Back-to-School Perspective

I hope you all don’t mind that I often just post to give you links to other blogs!

But sometimes I find something that just needs to be shared.

This post really hit me, because as I’ve mentioned before, God’s got me on a journey of trusting Him more and relying on myself less.  I do not need to be in control of everything (and, wouldn’t you know it?  I’m really not!!)  and I don’t have to get everything perfect (and, again, do I even need to say that I don’t?)

And with that in mind as I send my kids back to school, this just fit in perfectly.

So here you go… even if you don’t have kids going off to school in the next week or so, I highly recommend this…

http://www.susiedavis.org/back-to-school-promises-for-parents/

Enjoy!

For the Disney fans… (the rest of you can ignore it!)

I found a link to this blog post on Pinterest and just thought I’d share it. Those of you who have been to Disney can probably relate; those of you planning a trip might want to be sure to read it!

From Love Our Disney, the 7 Most Disappointing Disney Vacation Moments.

It goes along well with my post about perspective when planning a trip to Disney with your family!

And I would add one more – waiting in line to see a character and then having the character leave when you are second in line!  (Yes, it happens!)

Have a happy day!

Opportunities (a.k.a, God’s Abundant Life, lesson 2)

Yesterday the Holy Spirit led me to this passage and it was so timely.

 

Ephesians 5:1-15

 1 Follow God’s example, therefore, as dearly loved children 2 and walk in the way of love, just as Christ loved us and gave himself up for us as a fragrant offering and sacrifice to God.

3 But among you there must not be even a hint of sexual immorality, or of any kind of impurity, or of greed, because these are improper for God’s holy people. 4 Nor should there be obscenity, foolish talk or coarse joking, which are out of place, but rather thanksgiving. 5 For of this you can be sure: No immoral, impure or greedy person—such a person is an idolater—has any inheritance in the kingdom of Christ and of God.[a] 6 Let no one deceive you with empty words, for because of such things God’s wrath comes on those who are disobedient. 7 Therefore do not be partners with them.

8 For you were once darkness, but now you are light in the Lord. Live as children of light 9 (for the fruit of the light consists in all goodness, righteousness and truth) 10 and find out what pleases the Lord. 11 Have nothing to do with the fruitless deeds of darkness, but rather expose them. 12 It is shameful even to mention what the disobedient do in secret. 13 But everything exposed by the light becomes visible—and everything that is illuminated becomes a light. 14 This is why it is said:

“Wake up, sleeper, rise from the dead, and Christ will shine on you.”

15 Be very careful, then, how you live—not as unwise but as wise, 16 making the most of every opportunity, because the days are evil.

 

(no wonder God tells us in John 14:26 that He will send the Holy Spirit as our counselor to remind us of His promises!)

The last verse, especially, spoke to me and that’s why I have it bolded above.  Very often I mother in survival mode – just trying to make it.  But God calls me to more than that.  I am to make the most of every moment with my children – to bring them up as men and women of God.  There is much evil in the world and if I am not actively working against that influence in my kids’ lives, then that evil can influence them very easily.

As parents we cannot be apathetic.  We cannot be indifferent.  We cannot be passive.

When my kids were infants and toddlers, I looked at the years ahead that I would have with them and it felt like an eternity.  No longer.  Those years are passing by much too quickly – and soon they will be gone.

Make the most of every opportunity, of every morning, every afternoon, every mealtime, of every bedtime.  Each moment is precious.

Will we as moms have moments where we feel desperate to get away?  Yes.  Moments that we cannot wait to end?  Yes.  Moments that are complete failures and serious screw-ups?  Yes.  And that’s ok.  I am determined not to dwell on feeling guilty about those.

Just every once in a while I am determined to come back and center myself on God’s fabulous calling – to raise these children of His to know Him and love Him and serve Him for their whole lives.  To focus myself on God.

And try again to make the most of every opportunity.

What you didn’t want to know (but you might someday be glad you heard)

Some of you might still be grossed out by my last post, and wondering why you’re still even reading my blog.  Sorry.  And it’s understandable, particularly if you have no personal experience.  Believe me, that’s where I was last month!

I honestly had no idea that there is such a high incidence of head lice.  And as I’m finding out, there is such a stigma here in the U.S. that you may *think* you don’t know any other families that have dealt with it!  But it’s very likely that you do.  Here are some facts; you do the math!

Pediculosis tends to be underreported because of the social stigma attached—namely, the preconceived notion that lice of any kind are related to dirt and poor personal hygiene. In fact, personal cleanliness is not a factor in infestation rates.

This stigma facilitates the spread of infestation. Affected families are reluctant to share information with their neighbors. Individual children are treated, but the community fails to address the infestation as a community-wide issue. School-wide and community-wide programs to eradicate lice are necessary to halt their continued spread.

Head louse infestation is most common in urban areas. Major infestations are seen in all socioeconomic groups. Head louse infestations occur most commonly in school-aged children, typically in late summer and autumn. The reported prevalence ranges from 10-40% in US schools.

From http://emedicine.medscape.com/article/225013-overview#a0156

10 to 40%!  Your child has 20 kids in his/her class?  That means 2 to 8 of them could potentially have lice!

Who knew?

So I want to share some things I learned as I dealt with this in my home.  Besides the fact that no one talks about it!!  But, there is knowledge out there that can help you if you happen to find an unwanted guest on your child’s head!!  🙂

This is probably way too long for a blog post.  Don’t feel like you need to read it all thoroughly unless you’re actually here because you know or suspect your child may have lice.  Just feel free to tuck this info away for future reference!

  • If you have children in school or preschool, it’s a good idea to do a quick head check for lice on a regular basis.  If you get a letter home from school saying that there are reported cases, check your children daily for at least a week.  And when I say check, you want to check the WHOLE head, paying particularly close attention to behind the ears and the nape of the neck.  You’ll want to look both for live lice and nits- which are lice eggs.  The nits will be on the hair shaft close to the head – they are uniform in shape and are stuck to the hair shaft.  In other words, if you can blow or easily wipe it off the hair, it’s probably not a nit.
  • Head lice are most commonly spread from head to head contact.  Lice do not jump or fly.  Therefore, putting your girls’ hair up in braids or even ponytails will decrease likelihood of transmission.  Natural repellents include rosemary, tea tree oil, and lavender – there are hair products readily available that contain these and I highly recommend regular use!
  • If you’ve found lice on your child’s head, don’t panic.  OK, you probably will at first – it’s understandable.  But do some research (the website linked above and this one are a good start) and if you have the benefit of knowing someone who has been through it, call them.  You will need someone to give you some advice, remind you to take a deep breath, and tell you that you’ll get through it (maybe you’ll need them to tell you repeatedly!).
  • Children should be taught never to share hair brushes, hats, helmets, hair accessories, or headphones!  And for older kids, in which, by the way, the incidence of lice is rising – remind them that head-to-head contact is easy when looking at pictures on cell phones and handheld electronics!  Just last week at the middle school open house I saw pictures up on the wall of children in one class – all of them had worn a wig for their picture – I shuddered!
  • If your children do get lice, you need to get yourself checked.  If you are treating your children at home, there’s a huge chance you can get lice, too.  And if you’re like me – you are hugging your kids, laying in their beds to read a story, and tons of other hair-to-hair contact – before you even realize they have lice!  You can go to your doctor to get checked, ask a friend who knows what she’s doing, or go to a place like this.
  • Please, please, please report cases of head lice to anyone they have recently had close contact with (friends, teachers, classmates).  Yes, it feels embarrassing, but it shouldn’t given the prevalence of lice.  And the more we as parents don’t ‘fess up and get this out in the open, the easier it is for transmission to occur!  It is better to know and catch a case of lice early – it’s easier to treat that way.  And, if multiple children have lice, it’s better to find out and have all of them treated rather than just treat yours, and then have them continue to be exposed to other untreated cases.
  • There are tons of products out there – we used RID.  One note about this – if your child has long or thick hair, expect it to be difficult to get the product through their hair fully.  You will need to use quite a bit and do small sections of hair at a time to make sure it’s fully saturated.  A metal comb is best – I didn’t think the plastic comb that came with the original bottle of RID I bought worked very well.  Follow the instructions on the box for treatment – including treating a second time after 7-10 days.  I also bought a Robi Comb, which I think would be good both for future head checks and for self-treating.
  • A note about combing – know that you have to be thorough and do this process at least once per day during the treatment period.  The best way to comb is to take a 1 1/2 inch square section of hair, and comb from all four sides of that square a couple of times – from the scalp all the way to the ends.  Wipe your comb often on a tissue.  I found it easiest to do my girls’ hair dry, although others say wet is best.  I guess do whatever works best for you.  I would suggest you put your hair up, wrapped in a towel, and wear a button-down shirt that you can take off (not over the head) after combing.  I would launder both the towel and the shirt after combing.  If you are finding white nits – which are empty eggs – I found it easiest just to cut that piece of hair out with a pair of scissors since often the comb didn’t seem able to get them off the hair shaft easily.
  • Launder, clean, vacuum, and quarantine things that can’t be washed.  The websites linked above will give you info on what/how to do this.  I probably went overboard on the laundering, but at the same time we had two family members who didn’t have the lice.  And I think all the laundry I did helped prevent them from getting them!

Again, sorry this was so long!  But I think we owe it to other moms to share what we’ve learned and help them through this!  If you’ve been through it before, do you have any tips you’d like to share?