Blog Changes


Image

I know that I have typically blogged 3 to 4 days per week but I am ill. The diagnosis is still unclear and I have many appointments with specialists each week. It is definitely something neurological (brain-related). Thus, I wanted you to know that I will likely be blogging once per week at the most. There will likely be weeks that  I will miss.

Thank you very much for being such loyal followers. I love you all.

When my health has returned, I will likely continue blogging 3 to 4 days per week. 

Celiac, Lies and Vertigo


Image

As most of you know, I’m the mom of a 3 year old who was recently diagnosed with severe celiac disease. Due to her fragile health, the GI doctors decided to forgo the endoscopy which would confirm her diagnosis until she is healthier. I was fine with this, in fact, I was relieved.

My little one is a pistol – too smart for her own good. She’s been dying to go to preschool since she was 18 months old when her brother started. So, this spring I signed her up at the same preschool he attended. I was clear in all of the paperwork that she had celiac. I even included a separate sheet that explained the condition in plain English.

In early August, I sent a letter from me along with a letter from my daughter’s doctor about the extent of her disease. I requested that she be kept from sensory tables that contained gluten products and that she not play with Play-doh that has gluten in it. The director of the school called me and said that if she could not play with Play-doh, she could not attend preschool. I calmly and politely explained that there are gluten-free options. By the end of our conversation, my daughter could attend school as long as I made homemade gluten-free play dough for the entire class (4 cups per month, a new color each time to match the curriculum). No problem, right? Well, the cost for the ingredients was $40 for one month! I requested reimbursement or a tuition credit and was denied.

Late last week the principal called and said that my little angel had to miss the first day of school because they have a tradition of making friendship necklaces out of Fruit Loops! Again I very calmly and diplomatically offered several gluten-free options and was turned down. It was just too inconvenient. I grudgingly agreed to keep her home. Several days later I had a voice mail that my daughter had to be kept home the following days: the day of the field trip to the pumpkin patch (they hand out pumpkin cookies), the harvest party (too hard to “police” the snacks), the Christmas party, the Valentine party and the end of the year picnic.

Needless to say, I am pissed off! I feel lied to and betrayed. How can they say they will work with me and then say she can’t attend any of the fun things? 

On top of all of this, I’ve been ill since August 15th when I was literally blind-sided by severe vertigo and a splitting headache. I was bed-ridden until several days ago. After a brain MRI, a physical therapy evaluation, my GP’s evaluation, a trip to urgent care and 3 visits to an ear, nose and throat specialist, no one knows what’s going on. I have more appointments next week: neurology; ear, nose and throat specialist; and physical therapy. The drugs the doctor gave me have virtually removed the vertigo symptoms but they make me very groggy and tired and I can’t drive. The downside is the constant splitting headache and occasional blurred vision have yet to resolve regardless of drugs or anything else. 

Sorry I haven’t posted but if I’d tried I would have been puking all over my keyboard. 

What is your experience as a parent or child with food allergies or celiac and schools? Helpful and accommodating or a royal pain in the ass? Please comment, I’m dying to know… I am feeling pretty alone right now.

Thanks! 🙂 

Gaaah!!! Gluten!!!


Gluten Free Grocery Guide

As the parent of a child recently diagnosed with celiac disease, the learning curve has been very steep and I’ve become well, paranoid. I am afraid to feed her almost anything packaged because, let’s face it, gluten might be lurking somewhere. The other day I fed her a Quaker Rice Cake because it said “gluten-free” on the package. Then I had a friend inform me that just because it says gluten free doesn’t mean that it really is. What?!

Apparently, there are no regulations regarding labeling in this arena. A company does not have to test the final product for gluten nor do they have to guarantee that the product is manufactured in a gluten-free facility in order to say it’s gluten free. Only the ingredients must be gluten free by themselves, technically. Oats and BHT can cause similar reactions to gluten in celiac patients. Who knew? Not me!

I am almost scared to go grocery shopping because what if I select something else that makes her sick? There are some really helpful websites: The Celiac Foundation [www.celiac.org], Celiac Central [www.celiaccentral.org] and Celiac.com [www.celiac.com]

There is a resource guide that can be purchased and this morning I have done just that. It’s being sent overnight express to my home so that I can take it shopping. It’s The Essential Gluten-Free Grocery Guide. You can purchase it on Amazon and at other online stores such as the Gluten Free Mall.

I also feel like a support group would be helpful but I’ve been unable to find any. Do any of you know of a support group or have ideas where I might locate one? I’ve contacted our local Children’s Hospital and emailed all of the above sites but have received nothing back.

I am very committed to ensuring that my daughter has a healthy lifestyle but I also don’t want her to feel defined by her disease, if that makes sense.

Puke, peanut butter and parenting


Image

So, we tried to go camping yesterday at Mount Rainier.

We’ve owned a travel trailer for years which is great as you’ve got your own bathroom and kitchen. A perfect little cabin on wheels. But then we took the course “Financial Peace University” and decided to sell our trailer in order to payoff debt. It was the right thing to do. 

This spring we purchased a large tent so that we could continue to camp which is a favorite family activity. It’s large enough that you can stand up in it and we figured there would be plenty of room for all of our gear. We found the air mattresses and sleeping bags that had been gathering dust on a shelf in the garage and got packing this past week.

The kids were up early, the cooler was packed solid with hamburger patties, eggs, Udi’s whole grain bread and other perishable sundries any gluten-free family family can’t live without.

So, it took longer to get to our destination due to construction work and many bathroom breaks which just occur with 2 youngsters.

We got there, got the tent put up and then started to lay out the food and the remainder of the camp to serve some lunch. The first thing we realized that we forgot was my daughter’s peanut butter. You see, the only “glutened” food we keep in our house is bread so we’ve got separate peanut butter – one pure and one contaminated… Looks like we forgot the pure one. Then we went searching for her Udi’s bread and guess what?! Yep. We forgot that too. Doh! I expected to keep my little one going on peanut butter sandwiches 3 days in a row while we were up here. Please know, this is not the norm…

So, we piled everyone back in the car to go in search of a gluten-free cracker or bread and some pure peanut butter. Realize, we are in a very rural part of Washington state and their idea of fine cuisine is Bar S franks and hoagie buns!

Slightly over an hour later and we’d hit pay dirt: Quaker rice cakes and peanut butter. Yes! We immediately donned the plastic spoon and smeared said peanut butter over a couple of cakes and passed them to our poor little one who had eaten some mandarin oranges and a cereal bar for sustenance. As we were driving back, she started to complain her head hurt. I assumed it was just the sun shining in her window that was bothering her. Stupid mommy…

We drove back to the campsite, knowing we’d arrive just in time to make dinner. So much for sightseeing today… 

Got back, little one had to use the facilities so the hubby took her (good man!) and I started prepping for dinner. On their way back, just before our site, she took a spill and a sharp rock gouged the hell out of her poor hand. 

Lots of comforting, soap and water (back at the bathroom) and 3 band-aids later and she was chilling with me on a rock when back up came everything she’d eaten since mid-morning. Oh puke!

So, we decided to call it a trip, take down the tent, repack the car and head for home. The mosquitoes were everywhere so I put the little sicko in the car but she didn’t want to be alone so I sat with her while my awesome 6 year old and his dad worked hard at getting everything else repacked. As we were sitting in the car the little bit of water that I’d given her post-puke came back up to… Yeah, right decision to go home.

Today, little one has very little appetite but otherwise seems “fine.” We’re all bummed that we’re here and not at the mountain but the thought of vomit covered sleeping bags was more than this mom could bare. 

Could have stayed if we had the trailer complete with bathroom and kitchen. Selling the trailer was the right thing to do. I don’t miss it all. Sniff…

My morning musing today: the BRAT diet of bananas, rice, applesauce and toast kind of works for celiacs, except for the toast – what do you eat when you are recovering from an upset stomach or flu? 

 

Celiac, coaching and crap


Image

Who am I?

I am a 47 year old stay-at-home mom, Christian and certified holistic health coach. My children are 6 years old and 3 years old. 

Why health coaching?

My husband and I adopted my daughter when she was 6 weeks old. She was a “failure to thrive” which means that she was not gaining weight. She was vomiting up most of the formula she was given. The rest was going straight through her. It was very scary. 

My daughter would not be here today if it weren’t for an angel named Zoe who donated over 200 ounces of her breast milk to my daughter. Zoe truly saved her life! After the breast milk, my daughter’s health improved. She gained weight and her development was within the normal range if not a little advanced. 

Fast forward to one year ago, she was not potty trained but she was not yet three years old. I wouldn’t have worried about the potty training except for the fact that she really wanted to be potty trained. She was obsessed, in fact, but just couldn’t get the hang of it for some reason. She was also super thin and not gaining weight or getting taller. She had undigested food in her poop [there was a lot of crap and still is!] and constantly complained that her stomach hurt. She was also sleeping 15 to 17 hours per day.

I was seeing a holistic health coach and we started talking about her education. I was fascinated – it sounded so cool! Perhaps, I thought, this could help my daughter.

In December of 2012, I heard a doctor lecture about digestive diseases. She talked about celiac disease in detail and by the end I was convinced that my little one had celiac. I just have to say, this is NOT something that you want someone you love to have. It’s an ugly disease and I’ve come to see more of its ugly mug than I ever wanted to…

Each day is a new beginning – trying to ensure that she is getting all of the nutrients and micro-nutrients that she needs as well as keeping her safe from gluten/wheat contamination. We’ve removed all gluten (except for a loaf of bread) from our kitchen and home – no standard shampoos or cleaning products, no basic soaps or sprays. 

My daughter “got glutened” several weeks back so she’s in the throes of not feeling well — the gluten caused internal bleeding so her intestines tightened to stop the bleeding which then led to severe constipation. She is anemic, her white blood cell count is elevated and she is not producing new red blood cells. 

I love writing this blog and sharing thoughts about health and wellness in all areas of our lives. 

Gluten Confusion


Gluten can be confusing because there are 3 types of gluten issues. There is gluten intolerance, gluten allergy and celiac disease.

You are likely wondering which, if any you or someone you know is suffering from.

Gluten allergies or intolerances (sensitivities) are best diagnosed one of two ways. The fastest method is to have a blood test but these tests can show that you have an allergy or intolerance when, in fact, you do not. The second type of test is to do an elimination diet. There are two methods of elimination diets but the result is the same. You remove all potentially offending foods for 10 days and then add them back in on a set schedule to see if they cause systemic upset.

Celiac disease is a completely different issue. A GI specialist needs to perform specified blood work and will then schedule an endoscopy, if deemed necessary. The biopsy takes 10 to 15 biopsies of intestinal cells. This test is looking at the health of the cilia (small hairs) that line the interior of your intestines.

If you are interested in an elimination diet or have further questions, you can sign up for a free consultation with me on my website: Chocolate Cake Slice with Raspberries or you can email your questions to: organicswithemily@gmail.com.