Life, Gluten Free

Why I Was Happy to Be Diagnosed with Celiac Disease

Fact: I breathed a sign of relief when I was diagnosed with Celiac Disease.

In January of 2008, I was sick. Really sick. My daughter was covered in a large, itchy skin rash and I was having tremendous digestive problems. Nothing I ate was okay, as my stomach couldn't handle anything. Eventually all I could eat was bland potatoes. I was losing weight and muscle mass.

What was wrong with me? And what was wrong with my daughter who was just about to turn one?

Celiac Disease.

I wouldn't say the diagnosis came easy either, because we were told by one doctor that our daughter's rash was normal and would go away. And that as for my stomach problems? "maybe it's just the flu."

Have you ever heard of a flu that can last over a month and results in someone losing a large amount of body weight and muscle mass? I haven't.

And an itchy rash that covers most of your child's body, is not normal. Not at all.

I started to worry that something was seriously wrong with me, because nothing I ate agreed with my digestive system and I was literally melting away. I'm a petite person to begin with, so losing weight was very dangerous for me.

Through a friend, we found an amazing pediatrician to take our daughter to who specializes in children with allergies and I found someone to help me as well. We found out that we both have Celiac Disease, and we were relieved because it was a diagnosis that we could do something about.

There wasn't anything wrong with me that couldn't be fixed, which I had started to wonder about. I thought I was really, really sick because it went on for months until we were diagnosed properly.

My daughter's itchy rash? Dermatis Herpetiformis. I've had it too, in the past, which made me really scratch my head when she began breaking out in the same exact rash that I had once had. But after we were diagnosed with Celiac Disease, the puzzle pieces all fell into place. It all made perfect sense.

Her rash looked like mine because we both have Celiac Disease.

And what if we hadn't found out? What if we were among the 95% that don't know?

We would be really sick, and my daughter may have ended up having growth issues. But instead we found out, changed our diet, and she continued to grow and be healthy.

That's why I was happy to be diagnosed, because it meant the end of suffering. We could make adjustments to our lifestyle and feel better. 

Fast forward to a couple of months after being diagnosed with celiac disease, my daughter's skin looked amazing. She still had some eczema which we found out to be related to food and environmental allergens, but she didn't have the Dermatitis Herpetiformis rash anymore. She wasn't covered from head to toe, and we were able to sleep at night because she stopped itching since the rash was gone. 

I started gaining weight again and my stomach liked the food I ate!

I remember the first Thanksgiving of being gluten-free. I didn't feel sick after I ate. 

That's why I say, be glad for your diagnosis.. because what if you didn't know? Can you imagine the damage that could be happening to your digestive tract? All the nutrients from food that your body can't absorb?

I had chronic iron deficiency both before and during pregnancy with my daughter... this was despite the fact that I took iron supplements. But even on iron supplements, my body just wasn't getting enough. 

I had people tell me it was because I'm vegetarian, but I just didn't buy it.

About 6 months after being gluten-free, I weaned myself off the compounded iron supplement I was taking. After I stopped taking it, I noticed that the symptoms of iron deficiency were not returning. I was tested several times over a course of many months and the results were the same: completely normal.

I've had it re-tested every year since my diagnosis in 2008 and my iron levels continue to be perfect.

The iron deficiency was because I have Celiac Disease and didn't know, so my gluten-filled diet was making me sick in more ways than most people imagine it can.

That's why I am thankful to know, because I was able to do something about it at a young age. I am even more thankful to know that my daughter has Celiac, because she will grow up on a healthy, organic, gluten-free diet!

How to be Tested

Entero Lab

We used Entero Lab, which I honestly believe is one of the very best ways to be tested. I've showed doctors my test results, and they continue to be amazed by the thorough testing methods employed by Entero Lab.

Blood tests are very inaccurate, yielding false positives 65% of the time. The immune response to gluten happens in the gut, not the blood stream. This is why stool testing is the best choice for testing gluten sensitivity and celiac disease.

I opted for the stool test and gene test from Entero Lab.

To learn more about Entero Lab and their testing methods, visit Which Test to Order and Test Pricing and Info.

Should you be tested?

Celiac disease is genetic. If you have it, at least one of your parents carry a gene. Your family members should be tested. Your children mostly definitely should be tested.

If you have IBS, Diabetes, Rheumatoid Arthritis, Autoimmune Thyroid Disease, Autoimmune Liver Disease, as well as other conditions.. you may want to be tested. Research shows a link between these conditions and Celiac. The relation may be genetic.

Symptoms for Celiac Disease vary from individual to individual, and can include digestive symptoms (gas, bloating), migraines, joint pain, stunted growth in children, anemia, skin rash, mouth sores.. among many other symptoms including neurological symptoms (gluten ataxia).

If you have symptoms that you believe could be Celiac Disease or Gluten Sensitivity, it would be in your best interest to consult with a qualified health professional that both takes these conditions seriously and is knowledgeable on accurate testing methods for proper diagnosis.

Life with Food Allergies, Our Story: Part 3

Catch up if you missed Part 1 and Part 2 of Life with Food Allergies: Our story. Feel free to enter the giveaway if you haven't already!

To wrap up Food Allergy Awareness Week, I want to share a little bit about how emotional it can be to deal with severe food allergies.

The truth: how I feel as a mom

When Sophie was first diagnosed with food allergies, I have to admit I was nothing short of terrified. And it took time to not be extremely fearful to give her any food - even the food that we knew was safe.

But ultimately, my husband and I decided: okay she has food allergies, but one step at a time we can figure this out. Let's celebrate what we can eat, come up with awesome recipes and make the best of it. Her food allergy diagnosis also came on the cusp of her (and my) diagnosis with Celiac Disease.

And so the journey began!

We immediately made our house free of her allergens and free of gluten. We tackled it as a family, and my husband and I never eat the foods that Sophie is severely allergic to. We don't feel deprived. For one, it's not safe.

Food proteins can last on surfaces for more than a week unless cleaned thoroughly.

Washing your mouth will not remove all food proteins from your saliva.

People have experienced allergic reactions from being kissed by someone who had food protein in their saliva and some of these reactions were fatal. 

Plus, you just don't look at food the same. Nuts, for example, aren't a "food" to us, but rather a danger that we avoid.

Foods that contain gluten aren't appetizing because it made us sick.

We just have a different outlook on foods now, and our diet is a huge part of our lifestyle so it becomes very fluid and natural to us.

But that doesn't mean I'm never scared or worried about Sophie's food allergies. I cringe when I see a nut-candy wrapper that blew in our yard from a neighbor. My husband and I notice things that most people wouldn't (crushed cashew on the sidewalk, pistacho shell in the sandbox at the park).

Social situations can also be difficult, because it may seem like no one really understands. The fact is, if they don't live it, they don't get it. You can't expect someone who has no previous knowledge of food allergies, to truly understand your situation. But hopefully you will find people that get it as much as they can. The most important part is that you understand, your child understands and is healthy, happy and growing!

To wrap this up, I want to let you know that people with food allergies do have rights. And below that, take a minute to check out some of the awesome resources we have in the food allergy community.

Know Your Rights

People with food allergies are protected under the American Disability ACT (ADA). A person with food allergies should not be left out just because they have a food allergy. Programs must be all-inclusive. For more information on this, visit Asthma And Allergy Foundation of America.

Resources:

Kids with Food Allergies (website, facebook, twitter, youtube, blog)

Food Allergy and Anaphylaxis Network (website, facebook, twitter)

Allergic Living (website, facebook)

Asthma and Allergy Foundation of America (website, facebook, twitter)

Arizona Food Allergy Alliance (website, facebook, twitter) *I don't live in AZ, but this group has wonderful information that applies to food allergies in general. 

The Nut-Free Mom (blog, facebook, book)

No Nuts Mom Group (facebook)

The BugaBees Friends with Food Allergies Book (website)

Food Allergy Awareness Apparel & Jewelry:

Olli Lolli: Allergy Aware Apparel for Kids

Hope Paige Designs Medical Bracelets

Mabels Labels (Food Allergy Awareness Stickers)

Laurens Hope Medical Bracelets

Life with Food Allergies: Our Story, Part 2

Catch up if you missed Part 1 of Life with Food Allergies: Our story. This is in celebration of Food Allergy Awareness Week, May 13 - 19. Feel free to enter the giveaway if you haven't already!

Part 2 focuses on how we navigate our lives from social activities to traveling.

Daily life, activities

We have become quite the experts at managing food allergies, but we've been doing it for 4 years now. It's not something that we honestly ever think about in quite the same context as others do who aren't familiar with food allergies. For us, it's just normal. 

Eventually, it becomes a part of your life. It's our lifestyle, and we don'r think of it as a burden. The steps we take are nearly automatic and it gets easier in time.

Birthday Parties:

I make Sophie a safe treat and bring snacks for her. Our wonderful friends make sure nothing is at the party that could cause a severe food allergic reaction for Sophie. Especially given that kids play, and food proteins can spread easily. Sophie knows not to eat foods that aren't approved by us, but there are many ways for food proteins to enter the body (hand touches mouth, eyes, etc).

And it never hurts to clean your child's hands, often! I always carry a natural, non-toxic hand sanitizer.

Classes & Activities

I have chosen to homeschool Sophie, but that is something my husband and I considered even when I was pregnant. Finding out that she has food allergies and celiac disease only made the decision seem even more logical.

But when it comes to classes and other activities, we've got it covered.

Sophie has taken gymnastics, ballet and tennis. She has never been in a bubble, or exempt from activities that she has wanted to participate in. 

Communicate & Make it Safe 

As a parent of a food allergic child, I whole-heartedly believe that having food allergies should not exempt you from activities, classes or events. There's usualy a way to make it safe. Communication is key.

When the time came that Sophie wanted to take a concert-series ballet class, I was nervous but I knew we could make it work. She had already taken other ballet classes, and I had taken similar steps to ensure her safety.

Here are a few steps I took:

1) I communicated with the ballet teacher and the dance coordinator about Sophie's food allergies. I told them that her having food allergies should not be a reason for her to be unable to participate in a concert series class. They agreed and made sure students cleaned their hands prior to class. NO food or drink was allowed in class.

2) I arranged for myself to be in the dressing room at the concert as a helper. I watched Sophie and her group until it was their turn and then I ran to my seat in the auditorium to watch. NO food or drink was allowed in the dressing room. After her show was over, I quickly made my way back to the dressing room to find her.

3) I remembered to breathe.

Traveling

We do not travel via air because it's too risky for us. But luckily there are many ways to travel. We took a road trip once and stayed at a KOA, which seemed a good option for us especially given Sophie's allergy to dust and dust mites. The KOA cabin was basically a stripped down wooden cabin and we brought everything else, such as our sheets and pillows. We've also camped in a tent at a camp ground.

And we remember to wipe down picnic tables and use a towel or table cloth because food proteins can last on surfaces for up to a week, unless cleaned thoroughly.

There are definitely safe ways to travel, and you just have to remember to BYOF: bring your own food :)

Stay tuned for Part 3!

Giveaway for Olli Lolli: Allergy Aware Apparel for Kids

Olli Lolli is sponsoring a giveaway in celebration of Food Allergy Awareness Week (May 13 - 19) and in conjunction with my series on Life with Food Allergies: Our Story (view part 1)

Olli Lolli's motto is "Don’t carry your allergy medication - wear it! " 

The company is based in Canada and founded by Michelle Williams, a mom of a food allergic child. She wanted her son to be able to wear his medication, instead of just carrying it. That way, it wouldn't get lost and it would be readily available should he need it. 

Sounds genuis right? 

Michelle took her idea a step further, creating high-quality durable clothing made out of safe materials such as organic cotton and jewelery made out of medical grade stainless steel.

Michelle's story is inspiring, and now her dream is a reality which helps other families keep their children safe, too.

Check out The Olli Pocket Gear Line which includes Windbreakers, Organic Cotton Hoodies and Organic Cotton Cargo Pants. 

Other products from Olli Lolli include Allergy Aware T-Shirts made out of organic cotton (Egg Free Kid, Nut Free Kid, Dairy Free Kid, Wheat Free Kid) and Allergy Aware Jewelery including both necklaces and bracelets.

You can find Olli Lolli on facebook, twitter and follow their blog.

Thanks to Olli Lolli for sponsoring a giveaway and being committed to fostering food allergy awareness.

For the giveaway, Olli Lolli is offering one Olli Pocket Wind Breaker.

It's equipped with a built-in pocket, clearly labeled for your child's Epi-Pen Injector, Insulin Injector or Asthma Inhaler. It includes an information insert for your child's name, emergency contact and medical information.

The shell is durable, water-proof and lined with 100% jersey cotton.

Sizes: X(4-5), S(6-7), M(8-9) and L(10-11)

Choose from: Taupe with Purple Lining or Sapphire Blue with Cream Lining. (pictured below)

GIVEAWAY DETAILS:

To enter you must leave a comment on this post telling me your favorite product from Olli Lolli and why.

The giveaway is on from May 14 until May 19, 2012 at 11pm MST.

Be sure to leave your email address, so we can contact you if you win!

Olli Lolli will ship to a US or Canadian address.

Just one comment per person and we will pick a random winner at the end of the giveaway. Thanks for participating!

And don't forget to follow Olli Lolli on facebook to keep up to date on their products.

Living with Food Allergies: Our Story, Part 1

In honor of Food Allergy Awareness Week (May 13 - May 19), I am hosting a series called Living with Food Allergies: Our Story. My sponsor for this series is Olli Lolli: Allergy Aware Apparel for Kids. I am hosting a special giveaway sponsored by Olli Lolli too, stay tuned! :)

Our Story

Our daughter Sophie is 5 years old, and has multiple severe food allergies. We first became aware of her food allergies when she experienced an allergic reaction to pine nuts. After that, she was tested and diagnosed with a severe allergy to tree nuts, among other foods (including melons, berries, flax and sesame). 

Sophie's first food allergic reaction

Sophie was just about 13 months old and ingested a very small amount of pine nut and within minutes she broke out in large clusters of hives on her arms and began throwing up continuously.

In the ambulance ride to the hospital, I explained that we had just started seeing a pediatrician that specializes in food allergies, and that Sophie hasn't had her blood test for food allergies yet but I emphasized that I am certain she is experiencing a food allergic reaction.

I verbally gave a list of the foods that we believed her to be allergic to (we had no idea she was allergic to nuts). But the paramedic pointed out to me that Sophie has not been diagnosed with any food allergies, and my list of foods can only be considered "suspected foods."

Once we reached the hospital, we were told that they were ready to give her a chest x-ray. They did not believe she was having an allergic reaction, but rather they thought she was choking. This was mostly due, apparently, to her not having a history of food allergies.

Sophie's pediatrician was contacted, and she requested that Sophie be discharged and brought to her because the hospital was ignoring the clear signs of a food allergic reaction.

Before I continue I need to make something clear, if your child is experiencing a food allergic reaction you should seek medical attention immediately. Sophie's pediatrician specializes in food allergies, and was informed of her condition, vitals and symptoms. Her professional opinion was that Sophie could safely be transported to her office, because she was not having any breathing problems or loss of conciousness and her vitals were perfect. 

Sophie's reaction did not require the use of epinephrine. Her symptoms were vomitting and hives, but it did not progress further.

It is unfortunately quite common for food allergies to be misdiagnosed in the emergency room. I was asked to participate in a survey panel on this very subject, in hopes of improving diagnosis and treatment.

Diagnosis

We sat with her doctor for over an hour after Sophie's allergic reaction, letting it sink in and talking about what this means for us now. She explained that we need to carry EpiPen's because subsequent reactions can be worse than the first, especially given that her first reaction was to a nut. And the next step was to have her blood tested for food and environmental allergies.

Sophie tested positive for both IgG and IgE reactions to many different foods and other allergens such as dust, dust mites and grass.

Be an Adovcate for your Child

I believe that diagnosis counts in many ways... and in an extremely important way, because it can impact the care that you receive from paramedics and doctors in the emergency room.

But most importantly, you have to be the voice for your child, be their adovcate. You have to realize that the paramedics are there to help, but they do not know your child. They are unaware of your child's previous medical history or conditions. That's why you have to stay focused and be able to give them the information they need in order to help your child.

After Sophie's first food allergic reaction, my husband and I both took on the roles of being an adovcate for her. Sometimes that means disagreeing with a doctor. While I have extreme respect for paramedics, nurses and doctors - I am also a parent, and I know that the bottom line is: I know my child the best because I'm with her everyday. 

The mistake that was made by the hopsital during Sophie's food allergic reaction was unfortunate, but not uncommon. Hopefully, sharing my story will help spread awareness and give parents courage to speak up in times when they know what is happening to their child, even if doctors are unable to see it. 

Stayed tuned for part 2 of Living with Food Allergies: Our Story, where I will talk about how we navigate our daily life, activities and more.