Gluten Free Mom

Deja vu - then there were two. That is two with autoimmune issues.

If you have read my blog before, then you know the story of  my Gluten Free Teen, who was diagnosed with Celiac Disease six years ago.  Her story is here.

 

Entering from stage left, meet my twelve-year-old Middle Child.  I am still in the middle of her story, in the “still trying to figure things out” phase, but chances are you have been (or maybe you currently are) in this phase as well.

 

I say Deja vu because that was the feeling I had last Friday night as I sat at the kitchen counter, the doctor on the other end of the phone saying “we found some results.”   Trying to get over that familiar sinking feeling, that life is taking you down a different path than you planned, while scratching down notes on the notepad I snatched from the hotel room we stayed at on our last vacation.  It was that too familiar whole-body sadness that swept over me as I realized my second child has autoimmune issues.

 

The short version of the story – we found out Friday night that our sweet Middle Child has not only an amoeba (which is thankfully treatable with antibiotics) but also IgA deficiency, an immunodeficiency. I am still doing research on this but it seems that IgA deficiency basically results in a weaker immune system thus explaining her reoccurring  illnesses.  Almost more discouraging is  that according to the doctor last night, the IgA deficiency makes it more difficult to test for celiac disease. 

 

I am not a doctor, a nurse, nutritionist or a psychologist – I just a Mom trying to keep my family healthy.  As such, this is merely our anecdotal story and should not be taken as medical advice. I also repeat some of the medical advise that I have been given over the years, but this is merely an anecdotal story of that advise and what we have done with it.  In no way should you consider any of this to be medical advise!

 

The long version of the story – like a lot stories, the Middle Child’s story starts years ago – signs that something was not right started as early as preschool.   The Middle Child was a very sweet, robust, happy, easy going toddler, but she seemed to be sick all of the time with colds, strep throat, and bronchitis.   The doctor at that point in time shrugged it off and said “well, she will have a stronger immune system when she grows up.”

 

Fast forward to around third grade when I really started to think there was something not quite right – it was hard to pin down, but she just seemed "spacy."  (There is a great medical term for you!)

 

We would joke about how she “lives up in the stratosphere of the clouds,” and is always daydreaming.  In some ways, we loved it because her creativity seemed to flow from the clouds and down to the earth in the form of her wonderful drawings and stories, and creative playtime.  But schoolwork (even at that young age) was starting to prove challenging.  She would reverse letters in her spelling words, had sloppy handwriting and seemed to take  longer to learn some basic things.  She was also still suffering from a lot of minor colds, sore throats etc.

 

I remember thinking then about getting her tested…but for what? Things did not seem right, but they were not extreme enough to justify some kind of intervention.  By this point in time, my Gluten Free Teen was diagnosed with Celiac Disease.  Of course we were all immediately tested for it and the Middle Child's test came back normal.

 

Fast forward to 5th grade (2 years ago) and we have just spent the night at the Emergency Room (it was Valentine’s Day) because the Middle Child had so much pain in her stomach that they thought it was her appendix.  Four hours later and following an MRI, the diagnosis is extreme constipation. 

 

The prescribed treatment was two months on Miralax.   Once again the test for Celiac Disease was negative.

 

Not satisfied with the answer of Western Medicine to take Miralax and “eat an apple a day,” I took the Middle Child to a naturopath to see if we could find some more conclusive answers.  The naturopath (at an out-of-pocket expense of $500) ran the ELISA screen which came back that the Middle Child is allergic to dairy, had a small reaction to gluten, and we ran a gene test which showed she has one of the Celiac genes. 

 

The validity of the ELISA test is controversial, but I am also allergic to dairy, and dairy might contribute to constipation, so we took the Middle Child off dairy.   Four years later, dairy seems to have been the answer to that problem, as she does not suffer from constipation anymore and she does well on limited amounts of dairy.

 

Fast forward again to January of 6^th grade – stomach issues seem under control but we still have the reoccurring minor illnesses.  She missed around 17 days of school in both 5^th and 6^th grades.

 

But more pressing at this point is the living-in-the-clouds issue – lots of day dreaming, doodling, terribly messy and disorganized. 

 

At this point, I was still spending one to two hours a night “helping” her with her homework and organization.  It was not that she was not smart – she actually is very bright.  But it is more the disorganization and the minor mistakes.  For instance, in math she understood the concepts but would make small addition errors that would result in the entire problem being wrong.

 

In my own heart, I knew I could not keep carrying her like I was.  Me being her private tutor every night for one – two hours was starting to stress the entire family.   I felt it was time to find a new school  that was not as academically challenging.  Dad on the other hand, felt that I was underestimating our Middle Child. 

 

I guess to prove to everyone else that there really seemed to be something wrong her, I decided to back away and let the Middle Child stand on her own feet with her school work.

 

The result was abysmal – she literally brought home a string of grades in the 30th to 50th percentile.  She also took the standardized test at school where she scored in the 99% on vocabulary and in the bottom 10% on math.

 

At that point the school recommended that we have her tested for learning disorders.  I scheduled the testing and we looked around at some alternative schools, at the same time that little voice in the back of my head (aka God) is whispering “gluten.” “ Yes, gluten, take her off the gluten.”

 

When someone asks me what it is like when I eat gluten, I say it is like I am drunk.  Literally I can’t focus, have a terrible time driving and the next day, looking back on my glutenized experience, it was like I was stoned out of my mind.  In fact, I believe medical research is starting to back up my own anecdotal experience.

 

So I thought “why not” I can’t focus when I have gluten, so maybe that is the Middle Child's story as well. 

 

So I take her off gluten – not really to the extent that my Gluten Free Teen is gluten free, but close.  Everything we eat at home is already GF.  I sent the Middle Child to school with a gluten free lunch but  I let things go when it came to birthday parties etc.  Remember she has consistently tested negative for celiac disease.

 

The results – a miraculous turn around in her “with-it-ness.”  The Middle Child landed back on earth – still occasionally day dreams and still doodles a ton, but she is an A-B student, all of the spelling errors are gone, her handwriting has improved, she has an A in math (last year she had a C-). 

 

There are definitely still some small issues – she loses a lot of things, her room is still a mess, but I can see a new child emerging out of the clouds. 

 

Fast forward to two weeks ago  - the Middle Child is in 7th grade, still at the academically challenging school and she is largely gluten free.  I say largely because she still eats gluten when she goes out with her friends and she still eats some things that have a risk of cross-contamination that the Gluten Free Teen doesn’t eat. 

 

There are definitely some organizational issues and the first two weeks of school she managed to lose a cooler, her volleyball shoes, her literature notebook twice, her history book three times, and her daily planner (which is supposed to keep her organized)!  I started out the school year as her personal tutor, but she is growing her own wings and has finally become pretty independent in her schoolwork.

 

About a month ago, she misses a few days of school due to a bad cold, which ultimately lands her on antibiotics, and then the stomachaches began.  Her stomach hurt so bad she was almost doubled over in pain which has resulted in frequent visits to the nurses office, and several days again of missed school.   At the same time, she seems to not be growing.  This is a girl who was born at 10.4 pounds, a whopping 24 inches long and now she is among the shortest girls in her class. 

 

Even though she is largely gluten free, she still eats enough gluten that when the stomach aches started I thought, “well this is it – it is celiac.”

 

Back in the doctor’s office again (the same office where my Gluten Free Teen’s initial blood test were done), the same panel of blood tests is run, the same stool sample.  But because of the day dreaming issue, the doctor is also recommending that we consider testing for inattentive ADHD. 

 

Then the call last Friday night with the initial test results – turns out the Middle Child has an amoeba in her large intestine that is causing the stomach pain.  She most likely picked it up in Mexico last spring.   (Didn't expect that result!)

 

In addition to that, they determined she has an IgA Deficiency.  I am still researching this, but from the internet it seems that IgA Deficiency is an immunodeficiency that basically results in a weaker immune system thus explaining her reoccurring  illnesses.  Almost more discouraging is  that according to the doctor last night, the IgA deficiency makes it more difficult to test for celiac disease.

 

So this is where I sit now, the second child with autoimmune issues and wondering what to do next.  In some ways, the Gluten Free Teen was easier.  It took a couple of years to finally get her diagnosis but the diagnosis was definitive -– celiac confirmed with a biopsy of small intestine.

 

With the Middle Child, I have the fact that gluten seems to make her spacey and now the IgA deficiency.  At the same time, the Celiac blood test was once again negative but according to the doctor the IgA deficiency makes the Celiac test inconclusive.  I also believe there is a higher occurrence of people with IgA deficiency in the celiac community than in the population at large. 

 

So I have spent the weekend pondering what do I do?  I am sure her doctor will refer me to Children's Hospital and they will run more test but will she have to eat more gluten for these test to be conclusive?  

Or do I just keep her off gluten?   She has one autoimmune issue – so it’s not too hard of a stretch to expect another, but anyone on the GF diet knows it is not that easy.  Sure at home it is no problem, but as she gets older she will be going out with friends, treats in the classroom, dates, college, her wedding?  Do I really make her stay completely off gluten just because it seems to make her feel bad and spacey?  Or is it ADHD after all?

Or if she does have Celiac and continues to eat a little gluten, are we risking refractory sprue, infertility at some point, anemia???  Or is it merely a gluten intolerance? 

 

The deja vu – that complete body sadness.  It is not the “oh this is a sad movie I am going to cry.”  It is a whole body feeling that starts in the middle of my heart and weighs down my entire body, all the way to the bottom of my feet.  I am not mourning the loss of normalness as I did for my Gluten Free Teen – I have experience to show myself that you can live gluten free and live a normal life.  More challenging yes, but I will say even a better than normal life as my Gluten Free Teen is an A student, captain of her volleyball team, just made the band at Church as singer and guitar player, and a strong leader.  But most importantly she has a better perspective on life and what it is all about that she gained from having this autoimmune disorder.

 

I just honestly prayed that my Middle Child would be spared and apparently she has not been.  My parents will tell you that all kids have issues and I guess these are mine for now.  All I can do is pray that God will lead us in the right direction with the Middle Child as he did with her older sister.  I don’t believe that God causes illness (it is a fallen world that we live in) but I do believe he can bring us out of the darkness.

 

So this is where I stand right now – in a state of unknowing – not knowing exactly what my Middle Child has or what to do about it. 

Living a Healthy Gluten Free Life by Ashley Koff

I have been out in the wilderness this past week - in Washington State all 5th Graders journey to the wilderness for a course in Outdoor Education.  We spent a few days at Camp Colman learning about outdoor survival, canoeing and marine invertebrates, forging new friendships and just getting down right dirty.  

 

 

I have returned home with a ton of laundry, and completely  exhausted - did I mention I was with 52 fifth graders as I describe as "kids with hormones who do not know what to do with them."  So I am thankful for the following guest post from Ashley Koff.  

 

 

Ashley believes, as I do, that the best way to live gluten free, is to live a healthy gluten free life: 

 

Got a young one who needs a gluten-free diet or maybe you are following a gluten-free diet and don't want your kids to feel "penalized" by the food choices.  Regardless of who needs to eat gluten-free, it can seem  tough to find kid and parent approved options that are gluten-free and taste good and are healthy. 

 First, note that when it comes to capturing the full health benefits from a gluten-free diet, it’s best to choose the highest quality ingredients – this means organic whenever possible and non-GMO as well as free from any artificial ingredients. This also means eating food in its whole form as often as possible which provides optimal ratios of ingredients like fiber to sugar, and potassium to sodium content.  

Second, beyond what we feed our kids, what we package their food in matters too. From what you pack their lunch in to what they drink from, try to skip plastic (or use BPA-free) and use eco-friendly materials for a healthier child, and healthier environment.   

Third, to take the pressure off, remember that kids’ bodies need “eating occasions” not meals during the day – think of the school day as a series of “pit stops” (its even great to discuss this analogy with your child – that their body is like a race car that needs “pit stops” about every three hours). Also, aim for a balance of nutrients at each eating occasion – some carbohydrate, protein, and healthy fat – plus unlimited vegetables. This way, with eating occasions, you can pack a bag of fun “sample-sized” items and your child can choose what they eat and when thereby further engaging them in their eating behaviors. 

Need some Kid-tested, Parent and AshleyKoffApproved (AKA) ideas: 

1. Real potato chips – choose organic or baked – and achieve portion control by re-packing it at home into a portion controlled container or buying a 100 calorie pack. For nutrient balance, pack a string cheese and for a way to get in some extra veggies pack some salsa. You can also crumble corn tortilla chips (gluten-free too) into a salad and make a taco salad with beans, avocado, salsa, and chicken (optional). 
2. Nature’s candy bowl: create a trail mix from a whole grain gluten-free cereal (Nature’s Path Gorilla Munch), add some nuts and / or coconut pieces (coconut is not a tree nut so it’s ok if the school has a “no nut” policy), organic chocolate chips, and dried fruit (avoid dried fruit with sugar, try Just Berries or Just Mango). 
3. PB & Fruit: Take an organic, gluten-free waffle and spread an organic nut butter (almond, peanut, or sunflower seed if skipping nuts) and then place sliced strawberries on top. 
4. Quick sundae, everyday: grab a plain, organic yogurt and send them with their own toppings: organic berries and a gluten-free organic granola or organic, whole grain cereals (you can also use your trail mix here – see #1) 
5. Dip-it! Dips are a perfect way to upgrade nutrition and even hide in some veggies – if you use organic Greek yogurt you get more protein and less carbohydrate so it pairs perfectly with your baked chips. Make them in kid-friendly flavors (and even hide some pureed broccoli in there) by adding spices or blending with a nut butter and some honey (kids love this dip and it goes great with vegetables or chips). Homemade bean dips don’t just have to be hummus – you can make them from different beans and oils to change things up. And a lot of kids like pesto which can be a great way to get in some omega 3 fatty acids and goes with veggies, chips, and even can replace the yolk filling for yummy deviled eggs. 

For more recipes, visit ashleykoffapproved.com or get my cookbook Recipes for IBS or The G-Free Diet by Elisabeth Hasselbeck.

 

Ashley Koff RD

www.ashleykoffapproved.com 

If you'd like to submit a guest post for this blog, email me at jamie@glutenfreemom.com 

For more photos from Camp Colman, click here.

Testing for Celiac Disease - From a Kids Point of View

Since May is Celiac Disease awareness month, I thought you might like to read what it is like to be tested for Celiac Disease from the kids point of view.  Anyone who has read my blog for a while knows that my daughter Alex was diagnosed with Celiac Disease the summer between third and fourth grade.  You can read more about this from my perspective on my website, but here is what it was like to Alex.  She wrote this at the beginning of this school year, as a memoir assignment for English.  

 A Summer to Remember

by: Alex   

For most kids, third grade is one of the easiest years in school, but not for me.  I was just like every other kid, I loved to play with my friends, I had a family that loved me, but I was sick.  Altogether I missed 36 days of school.  My stomach felt like somebody was punching me from the inside.  My head was burning almost as if a heater was constantly following me.  

The sad part was that I was skinny and pale and never felt good.  

Of course, my parents got worried and that is when the first doctor visit happened. 

I stumbled into Room Two at Woodinville Pediatrics, I felt worried and sick, as usual.  I can still remember the smell of the antibacterial soap and rubber gloves.  The doctor strode in and did not know what was wrong, so he decided to draw my blood.  It was a completely painful and terrifying experience because I was so dehydrated they could not find a vein.  Ever since then, I have been completely terrified of getting my blood drawn.  When the test results came back, I tested positive for Celiac Disease.  

At the time I had no idea what that was and could not even pronounce the name.  We discovered later that Celiac Disease is an autoimmune disorder that requires you to not eat gluten so you do not get stomach aches.  To figure out if I really had Celiac Disease, we had to go see a specialist doctor. 

On that summery day between third and fourth grade, I was terrified about what would happen.  I staggered through the automatic sliding doors and considered everything that might happen.  Children’s Hospital is made to look warm and cheery and happy, but all I felt was fear and nervousness.  

The Top Five Tips on Raising Children with Food Allergies

As a parent of children with food allergies, I am often asked “How do you manage it all?”

Here are my Top Five Tips:

Never Let Them See You Cry - Number one and most importantly, never let them see you   cry!  When our oldest daughter was diagnosed with celiac disease, I was relieved to have a diagnosis but overwhelmed with what seemed like the mountain I had to summit to provide her with safe food.  This was back before Gluten Free had become a household term, but even today navigating the ins and outs of finding safe food can often feel like a part-time job.  Rejoice in the fact that you know what is making your child sick, but then take your private time to grieve.  For me, I spent a day locked away in our guest bedroom, mourning what I perceived to be the loss of our “normal” diet and watching a documentary on the evolution of life.  At the end of my pity party, I emerged from the guest room determined to make the best of our new diet.  I still have moments when I just wish we could go out to eat and order off the menu, but I do not let those moments show.  How can I expect my kid not to have a bad attitude about our diet if I do?  Luckily, this approach has worked so far.  It would be a lie to say that my daughter loves her diet, but she deals with it and does not let it get her down. 

 Educate, Educate, Educate - Consider yourself enrolled in a Food 101 class to learn about whatever diet restrictions you may have.  The internet is an amazing resource of information.  Perform a simple Bing search with your diet restrictions and you will have more than enough information.  For a list of resources on the gluten free diet, go to GlutenFreeMom/GettingStartedGlutenFree.com In addition, if you are following other specific diet restrictions check out these websites: 

www.allergicchild.com

www.peanutallergy.com

www.autismweb.com

Learn to Read Labels - You may have successfully negotiated life without ever reading a food label, but those days are over.  Life will be a little bit easier if your child suffers from one of the top 8 allergens, as the FDA requires food manufacturers to label containers with these ingredients.  Thus, milk, eggs, peanuts, tree nuts (such as almonds, cashews, and walnuts), fish (such as bass, cod, flounder), shellfish (such as crab, lobster, shrimp), soy, and wheat will be labeled.  Unfortunately, it is not as simple as it may sound.  For instance, the parent of a child with a dairy allergy also needs to avoid foods that contain butter, butter fat, butter oil, butter acid, butter ester(s), buttermilk, casein, casein hydrolysate, caseinates, all cheese, cottage cheese, cream, curds, custard, diacetyl ghee, half-and-half, lactalbumin, lactalbumin phosphate, lactoferrin, lactose lactulose, milk (including condensed, derivative, dry, evaporated, goat’s milk and milk from other animals, low-fat, malted, milkfat, nonfat, powder, protein, skimmed, solids, whole), milk protein, hydrolysate pudding, Recaldent®, rennet, casein, sour cream, sour cream solids, sour milk solids tagatose, whey, whey protein, hydrolysate, yogurt.  You get the picture - and the important point is Educating Yourself!  For safe eating, our motto is When in Doubt, Go Without.  For more on understanding food labels go  to food allergy.org.

Go Healthy – When first tackling food allergies, you can choose one of two paths – you can spend a lot of time reading labels and searching the web for “safe” allergy friendly food, or you can spend that same time cooking wholesome food for your family that you know is safe.  You will have to find the approach that works for your family, but for us simpler is better. Thus, if something has more than five ingredients and is not clearly labeled, I will not buy it.  I would rather go without than spend all the time it is going to take to find out if it is gluten free.  I have also found that in most instances it is quicker and easier to make it myself and find reassurance in knowing what all of the ingredients are and where they came from.  So instead of searching for a box of processed crackers that are free from all of your allergens, feed your kids an apple smeared with peanut butter (if they can have that) or a slice of cheese.  You will all be better off in the end. 

Do Not Stop Living – Some people live to eat - we have learned to eat so we can live.  Eating out, traveling, school, birthday parties, etc., will be little mountains that you will have to summit over and over again.  For us, we would rather go and have to deal with the challenges presented by our special diets than to not go at all.

Bold statements to be sure, having lived with kids with multiple allergies for five years, but I have to admit we did not eat out for the first six months on the gluten free diet.  I just wasn’t prepared enough to handle that yet. The first time we did go out, it was a disaster!  We went to a chain restaurant, during the busy lunch hour, at a very busy mall.  We were not sure what we were doing and our waiter was even worse.  When the food finally did arrive – the burger was on a bun.  We sent it back.  Of course, while we were waiting for the new burger the other kids (who were starving by this time) gobbled all of their lunch and they were more than ready to go by the time the Gluten Free Kid’s burger arrived – then, in tears, she refused to eat the burger.  Just a hunk of hamburger meat was not too appealing to her.  So we went home and cooked lunch.

It was months before we went out again.  This time we were armed with information, called before we went to confirm they could prepare a GF meal, picked a gluten friendly restaurant, and went before the dinner rush.  Most importantly we had a great time – they were so nice they even gave us complimentary desserts.  No – we do not eat out as much as we used to.  But we have had many terrific gluten free dining out experiences since then and have had friends also successfully prepare us meals in their homes.   

 

 

Because living with diet restrictions will not stop you from living the life you choose! 

A Few Words from a Gluten Free Teen

I have a guest writer this week - the Gluten Free Teen.  Even though I try to make life as"normal" and as happy for her as I can, I know that her diet still bothers her at times.  Like most normal teens she just wants to be like everyone else, so having a special diet is something she'd rather forget about. 

No matter how hard I try to provide her with gluten free options, as she gets older and more independent, there are more and more instances that I just don't know about.  Mom bringing special brownies into class just doesn't work in middle school.   

At the same time, she really does not like to talk about her diet.  So when she offered to write my blog post for this week, I was more than excited to accept her offer.  It gave me a chance to see that things are still tough at times.  It gave me a look into her life.  Maybe one of our kids will read it and find some solace in the connection as well.

Hi this is the gluten free teen or Alex. There are a few things I wanted to tell you about being a gluten free teen.

Sometimes, well actually most of the time, things can be pretty tough food wise. I have encountered many incidents outside of our home, where I was left with no food and feeling left out. But I have also experienced people who have taken the time to make sure that I can participate and have something to eat. I have had heartbreaking experiences, and touching experiences.

One of the many tough times that I have experienced was in math. I know this sounds weird and might not sound like a big deal but it really does hurt. My math teacher’s wife loves trying out new recipes and then giving them to her husband’s students to test. I was taking a math test and he asked the class if anyone was allergic to nuts or chocolate. We all said no. The next thing I saw was a bag of delicious looking cookies being passed out to the whole class. Of course I didn’t eat them. I’m a good girl and don’t want to get sick. So I told him I couldn’t eat them and he didn’t even care. I was fighting back tears and it was really hard but I survived and ate some yummy ice cream when I got home. But still, it hurts.

Another experience that pierced my heart was in sixth grade when everyone had coffee cake. I love cake, and I love coffee, so you can imagine hard it would be to not be able to eat coffee cake. Well it looked delicious and I was incredibly sad because all I had to eat was 2 teeny tiny stale and disgusting, gluten free cookies. While my whole class was pigging out on coffee cake I was eating gross food. It was a small incident but still incredibly painful.

Now that I’ve managed to depress you thoroughly I will talk about some of the touching experiences. At school we read the book Alice in Wonderland. Of course, after reading this we just had to have a Mad Hatter Tea Party. I was deeply bummed because I figured that once again, I would be left out. But surprisingly enough my English Teacher bought me a gluten free chocolate dome and some delicious gluten free cookies. They were amazing and she even had the correct kind of drink for me! I was so touched and greatly thanked her.

My Journalism class had a party once the yearbook was finished. I was going to bring in some popcorn for me to eat, but of course I forgot. I figured that I would have to put on my happy face and act happy while everyone was eating yummy brownies and cookies, but that is the opposite of what happened. Two of my friends brought in chips that they made sure were gluten free for me. I was so grateful and ended up having a genuine smile on my face! It was truly great.

As you can see, being a gluten free teen has some major rough spots. But it can also make you feel incredibly loved and thankful for the people that truly care about you. Even though you might feel very alone and sad about being gluten free, there are good things that come out of it. It might be amazingly hard to think of them (it was for me) but there is a reason for it. People love you and those who truly care about you will show it.