Monday, January 30, 2012
It's All In the Genes
Since having children, my opinion of genes has changed a fair bit. Take food for example and let's look at a bit of family history here:
Mr Man - allergic to peanuts
Miss A - celiac, dairy/soy intolerant
Parents:
Me - celiac, dairy/soy intolerant, shellfish allergic, cashew allergic
Chef Husband - allergic to nothing the lucky duck
Relatives:
Uncle - allergic to bananas, fish, shellfish, peanuts, tree nuts
Auntie - allergic to fish
Maternal grandmother - allergic to bananas, grapefruit, scallops, carries celiac gene
Paternal grandfather - allergic to some fish
That doesn't even start to delve into any other relatives like aunts and uncles for me or my husband. History of food allergies? why yes, I think there just might be one there.
Then look at my daughter today who underwent her second surgery of her life (and she's only 4!!) First of all, she looks exactly like I did as a child (talk about genetics):
She has her dad's tonsils and her mom's ears. Her tonsils (and adenoids) were covering 75% of her throat (and nose). Just like her dad's do. Her ears just won't work properly on their own, so she's on her second set of tubes now to eliminate ear infections and to restore her hearing (more importantly). She had moderate-severe hearing loss in one ear and mild-moderate in the other. Just like I did.
It's all in the genes.
Looking beyond the physical and medical side though, watching your children develop into this insanely strong, self-advocating, educating, powerful young beings makes me proud to know that they have my genes in them. If I gave them even a portion of their strength and intellect, then I applaud my genetic make-up. Because man alive, I am proud to be the mama to these children. Their children may have much higher likelihoods of food problems (just look at the genetic history!), but if the strength of my children is any indication, their kids will get by just fine.
Here is my daughter post-op, cuddled up to her doll she named "Lemon". She's doing well, eating like a machine, drinking up a storm, and talking. (Look for another post this week on what to do when you're away from home as a celiac).
Sunday, January 29, 2012
Lean on Me
Take the following 2 stories for example:
Celiac number one got diagnosed and had a bit of a meltdown about it. Her husband gave her immense support and took cooking to a whole new level. He helped her relabel their kitchen, replace things that needed to be replaced, reorganize their cupboards, and learn how to bake all kinds of breads, goodies and food that was all gluten free. He looks out for her as much as anyone else could.
Celiac number two got diagnosed. Her husband wouldn't let her buy any replacements for the kitchen because it was too expensive, and did the same for food. Celiac number two had no idea how to go about starting, and with no support, but rather push-back from home, she continues to consume gluten and is just as sick as ever.
Celiac number one is me. Celiac number two is someone I really do know.
I help people. Newly diagnosed celiacs call me or email me to ask for advice. Parents of children who are new to the allergy world find me on facebook through their friends and send a message to me asking what to do, where to start and how to deal with this new restriction. I love this ability to help people. I always tell people that if they want to pass on my name they can. It can be so overwhelming and so daunting when you first get diagnosed with any food restriction. Having someone who has been there - mentally and physically - can be very comforting and reassuring.
Support can come in many forms and I consider myself lucky to be surrounding by amazingly supportive friends and family members. They go out of their way to find food my family can eat (even buying desserts for my daughter so she doesn't feel left out of special dessert time at dinners), offer me support when I get glutened, and wait for the updates after appointments with the allergist for my son. I'm very, very lucky.
If you, or someone you know, needs that support, send them my way. Point them to my blog, find me on twitter @mamaceliac, or contact me for them. Let me offer them support and start them on this amazing journey. I find the science of allergies and celiac to be fascinating and I truly love helping people find hope during that initial overwhelming period.
As an aside - please send as many good thoughts as possible to my family. Miss A is having her rescheduled surgery tomorrow!
Sunday, January 22, 2012
Cook Your Troubles Away
Now, I have changed. I have become a person that I love. I respect myself, appreciate myself, and take little for granted. I don't hold grudges (well, not to the same degree I used to anyway), I see no point in vengeance, I try to look at the positive despite that being really hard sometimes, and I know that I alone can have an impact on how I handle a situation.
So after my rough week, I decided to cook my troubles away.
For the last number of years, Chef Husband has been in charge of the kitchen. I'm a pretty good cook, but he has always gotten quite a bit more pleasure out of cooking, and he definitely likes food more than me. In the last month, I've been finding my way around the kitchen more, and having quite a few successes (and I'm not going to lie.. there have been a few disasters). i feel rejuvinated, and I realize that as much as Chef H loves to cook and is a bit of a control freak in the kitchen, he appreciates my help and likes not cooking every meal.
I may have to make some significant dietary changes again. My biopsy results came back with weird results - nothing serious, but it's a toss up at this point as to whether it's Acid Reflux or the more daunting unknown Eosinophilic Esophagitis. I get rebiopsied in 3 weeks and should have a definitive answer one way or another then.
But back to cooking the troubles away.. a long time ago, we had this amazing chili like concoction that was lovingly known as "Bean Stuff". I have no idea why I had a desire to eat this comfort food, but I did. So I made this beautiful nutritious (mostly) supper for the family.
2 cans of Maple Baked Beans (14 oz each)
1 can of lentils, drained and rinsed
1 onion chopped (optional)
1 pound ground beef browned
1/2 pound of bacon cooked and chopped
3/4 cup of ketchup
1/2 cup brown sugar
3 tbsp apple cider vinegar
1 tsp worchestire sauce (gluten free)
1 clove garlic minced
1/2 tsp salt
Put it all in the slow cooker, stir, cook on low for 4 hours. (I need to thank Serben Free Range for making the best bacon in the world that went into the above and below recipes. Good bacon is second to none!!)
And voila, a beautiful meal (with plenty of leftovers). I love the additon of lentils into this dish for nutritional value, and taste. It's sweet without being too sweet and has a great flavour. We served it with a bun recipe from Jules Shepard's Free For All Cooking - one of my favourite cookbooks ever.
To top it off, I made egg muffins this morning. They're so easy and so good. To make 12:
12 eggs beaten
a variety of additions (think mushrooms, peppers, bacon, sausage, onion, cheese, etc).
In our case we made:
4 mushroom, yellow pepper, bacon
2 yellow pepper, bacon
6 bacon
Put the additions on the bottom of the muffin pan, add the egg mixture almost to the top, and cook for 20 minutes at 350. So easy, gluten free, dairy free, nut free, soy free, delicious guaranteed!
To celebrate the fact also that it warmed up 40 degrees (from -40 to +1 in a week), we went sledding together - an amazing fun outdoor activity that resulted in some very happy children!
Monday, January 16, 2012
Birthday Parties
It didn't used to be so bad. Before, I would always accompany my kids. I still do stay with my daughter as she's only 4, but my little man, he's almost 6.. and he goes by himself now.
His latest party was on Sunday and not only was I not going, but I couldn't drop him off or pick him up because I had a meeting. Mini freak out? Why yes, yes I did.
I thought it might be helpful to have a list of questions to ask, or things to remember to discuss as you start to send your child on his own, as well as things to talk to your child about. You see, believe that the more you share with your children about their limitations, the more they will become an advocate and become a stronger little human. These are also questions you yourself can use to ask potential dinner hosts or restaurants!
To the child attending the party:
* Make sure you review the "If in doubt, spit it out" rule. Vital rule for the rest of their life.
* Review and rehearse exactly what they allergic to, and make sure they can say it in a full, clear sentence. "I am allergic to peanuts and nuts and I can't have any at all." - simple words are all that is needed.
* Review the "what-if" scenarios - what if you feel like your throat is making it hard to breathe? Where is your epipen located?
* Make sure your child has a medical alert bracelet. This could save their life.
To the hosts:
* Be clear that there your child has food allergies / celiac disease and that you need to make sure that the food at the party will be safe for your child.
* I always ask whether that parent is comfortable with my child's allergies. As much as I don't want my kid to miss a party, I'd rather he come home alive.
* I ask for a list of foods that will be served including brands
* I ask where the cake is from, and if it's homemade, how often they bake with nuts
* Ask if they know anyone with food allergies directly and have they ever dealt with them before
It's usually a long conversation. But so far I have felt really comfortable in each situation letting Little Man go to parties. He's gone to 2 this school year in people's homes I've never met. Both times the parents were wonderful. My husband also told me that Little Man went around telling everyone to put away any nuts because he's very allergic. Now *THAT* is what I call an advocate!
Don't be ashamed of your food restrictions. The more you educate people, the more they will know for next time. You are responsible for your health, and for the health of your child. Be strong - the first conversation might feel awkward and hard, but it gets easier each time.
Thursday, January 12, 2012
Where Do I Find...
Family meals are fun. :)
But while foods are getting more labelling laws around them, what about the rest of your body?
As a celiac, would you put lipstick on that wasn't gluten-free? Does a day really go by that you don't lick your lips? And if what you put on your skin is absorbed into your body, should you make sure that what you're using is free from your allergens?
When I first when gluten-free in 2008, I didn't think very much about anything other than food. In the last year or so, I've noticed that my eczema flares up if I'm not careful about what I use on my skin, my head itches like crazy if I use generic shampoos, and my skin feels like it's on fire if I use random lotions.
So, here are few companies/products that I go-to a lot, for both me, and my children.
The Canadian company Green Beaver has some really great options out there. I especially love their Conditioning Detangler - it's gluten free, nut free and vegan and smells delicious! It also works wonderfully on my wee girl's frizzy locks. They have gluten free stuff for adults too.
Another one of my favourites is LUSH. Almost all of their products are gluten-free. A couple of them contain oats, though apparently in testing they are coming up as gluten-free. I don't use any of their products with oats in them, but I absolutely love their shampoo bars, their veganese conditioner, and the snake oil for itchy scalps. I have the majority of my facial stuff from here too.
So now you have some skin care and hair options. But what about make-up?
I love the All Natural Face. I've had the pleasure of emailing back and forth with the owner about the ingredients and feel very comfortable in her knowledge of what goes in her make-up. I almost exclusively use the eyeshadow from here, and often use the foundation powder and blush as well. On top of that, the prices are unreal for the quality of product you are getting.
I am on the hunt for a good gluten-free mascara. I've been asking everyone, but have yet to find one that I like. If you have any ideas, please let me know!!
And finally, AVON actually has the majority of their lipsticks/glosses/balms gluten-free. You just have to ask, and they will let you know.
The biggest thing is that for every company, there is a customer service number you can call, or email where you can find out more about a product. In some cases, I have received such ridiculous replies that have left me wondering if they even read my question.. some of the larger companies that aren't 100% sure on their manufacturing practices generally will give a very vague (but longwinded) response that leaves me feeling uneasy. Then, I just don't buy that product. Others will give you easy answers: yes, or no. (Is it really that hard to give a straight answer? I understand liability but OYVEY!)
There ARE products out there. Ask. Everywhere I go, I ask if something is gluten-free, even before I try a tester of it. In cosmetics and skin-care, companies are not required to list all the allergens like they would be with food. It's a different industry.
If you have any other favourites, please let me know! I'm always on the lookout for great information!
Happy shopping!
Tuesday, January 10, 2012
Healing Foods
So, my (amazing, fantastic, wonderful) gastro doctor decided to scope me.
Scopes are pretty standard practice to find: blockages, growths, evidence of esophogeal allergies, evidence of celiac disease, ulcers, etc. It turned out there was a blockage of some sort in my esophogus. They couldn't see anything in there (and I'm told it looked quite healthy!) but when they put a dialter down, they felt a blockage. They used a small balloon to stretch it and that should solve the problems.
I thought I'd use my experience to describe what happens for those of you about to go through it!
First I got changed into a beautifully becoming hospital gown that was just the perfect shade of blue for my eyes.. I had had to fast from the previous night on. Would you want to go down someone's throat with food in there? YUCK! Anyway, then an IV was inserted and some hydrating solution was dripping into my blood stream. It was actually kind of nice because I hadn't been allowed any liquids and by this point, I was parched!
I was wheeled into the room and placed onto my left side. There was my GI doc and 2 nurses. One nurse was at my head the whole time. They inserted a sedative into my IV, put a tooth block into my mouth that I had to bite on and then it was off to la-la land. The sedative feels very icy-burny going up the arm. I remember nothing from that moment until I was woken back up.
The GI talked to me for a few minutes about what they did and then I was wheeled out, completely out of it.
When you come out of the scope, your throat hurts (kind of like strep throat hurt), and your tummy is huge from the air they pump in to expand everything. You need to be passing gas before you are allowed to leave to make sure you can get all the air out. Under normal conditions, you stay monitored for 30 minutes. If there is anything abnormal - any pain for instance, you usually stay an hour.
And then you go home. But, because of the sedatives, you are considered impaired for 24 hours - no driving, no big decisions about money, and generally no work unless you can work somewhere where it can be laid back. You're pretty tired for a day or so.
Then, you need to be careful about what you eat. Soft foods are best because it is tender. Miss A helped me make some delicious smelling soup for supper. I hope it tastes as good as it smells!
I put in whatever I had on hand:
4 cups vegetable broth
2 celery stalks chopped
3 carrots chopped
1 leek chopped
3 potatoes chopped
And I turned it on high on my slow cooker for 4-5 hours. I'll puree it all when it's done. And then I'll eat it with some buiscuits from Jules' book Free For All Cooking .
Smoothies are also my best friend today.. this morning I made an amazing one chalk full of non dairy, non gluten goodness. (Plus it's also naturally nut free, soy free, egg free)
4 ice cubes on ice crush mode
strawberry puree
one banana
2 tablespoons of homemade coconut milk yogurt
Blend until beautifully smooth
There are foods that will help you feel better.. you just have to find them and remember that nutrients help the body heal!!
Saturday, January 7, 2012
Next Week - Can we Just Skip it?
You see, almost exactly 3 years after my first, I'm going for a second scope. I've been having issues with my esophogus to the point that it feels like there's something constantly, well, there. As though there's a big hunk of food constantly stuck towards the lower part. It's not overly comfortable and it's quite frustrating. It gives me heartburn frequently and makes food go down really slowly. Some foods make it worse (like overly spicy foods for instance), and nothing makes it better.
So after seeing my specialist for the first time in a long time, I'm having a scope (endoscopy) on Monday. Now, the cool thing about scopes is that they get to see inside you and see pretty quickly what's going on. My doc is unsure as to whether or not it's related to celiac disease, or whether it's a different issue completely. Either way, I'm quite relieved to know that I won't have to wait much past Monday at 1pm to find out.
And that's just Monday.
Tuesday should be a walk in a relatively calm park other than the slightly sore throat I'll have after the scope.
Wednesday Miss A goes in for surgery. Three years ago my little monster man had the same surgery - tonsils, adenoids out; tubes in. It wasn't too horrible and we've definitely benefited from that surgery. Three years ago Miss A also had surgery (and for added bonus, so did I.. 3 surgeries in 3 months) to put tubes in her ears. She was ear infection free for a long time after that, but they've returned while her hearing has gone to the dogs.
Both my kids suffer(ed) from sleep apnea, a potentially serious condition in which people hold their breath. Mr Man was a serious case - labelled moderate to severe as he stopped breathing (and his oxygen levels dropped to the 60s instead of the high 90s where they should be) 16 times an hour. Surgery has fixed that.
Miss A is more mild, but still has it - she stops breathing in random clusters. She'll be fine for a while, and then she'll hold her breath for periods of time all in a row.. then she'll be fine again. It's considered an "urgent case" so she goes under on Wednesday. The idea is that when the tonsils and adenoids are removed, it makes it easier for children to breath consistently. Gone will be her snoring, which truthfully I won't miss; and she should no longer suffer from apnea.
Then we'll be on a 2 week hiatus from the world. No playdates, no dance, no school. But oh, there will still be fun. There are crafts, and movies, and books, and snuggle time. And there's the fact that her breath will smell like a combination of dead people and dog breath.. that part won't be so fun.
Anyway, for all of you out there in the blog world, prayers and good thoughts shot my way will be more than appreciated.
And hey.. at least after next week, we can start looking at the positives!
Thursday, January 5, 2012
Her Story
Miss A was born after a daunting 44 hour labour. A week late, 5+ hours of pushing, a little help from my friends forceps and vacuum, she was my victory baby. She was my VBAC; my success; my proof to myself that I could do it. She was everything I could have dreamed she’d be. And she was a healthy 8 pounds 4 ounce bundle of beauty. She was bruised and bloody at birth, and I thought she was the most spectacular being in existence.
She stayed plump. Okay, I'll be honest. She was downright huge. She was consistently in the 85% for weight. She was a breastfed, contented baby that seriously thrived in every sense of the word. And then, at 5 months, she got RSV. Looking back, I think that's what triggered her celiac into full blown hell, but of course, that's speculation. She changed after that and began being more fussy. I hadn't been able to have any caffeine after she was born because the moment I took a sip, she'd be screaming after the next nursing, so I cut it out completely. But other than that, it was free reign for me on foods.
At 6 months, we tried solids. She had zero interest in any food and was fairly determined not to eat anything other than breastmilk. We tried again at 7, 8, 9 months and still she showed no consistent interest. She'd "eat" now and again, but never anything substantial. Around 9 months of age I took her to a naturopath and said that I was fairly convinced that she was reacting to dairy and wheat. He said that he thought her stomach was just immature.
At her one year appointment, when she was a hearty 22 pounds 7 ounces, her pediatrician also didn't show much concern given her beefy stance. What *I* knew what that all that beefiness was from my calorie rich milk, and not from any sort of food. In fact, Miss A would spontaneously vomit after eating and we couldn't link it to anything in specific. It didn't happen all the time, but seemingly rather randomly.
When Miss A was 14 months, I was diagnosed as celiac, but by that time, she was living on a meager diet of breast milk, toast (wheat), cheese (dairy), yogurt (dairy), and crackers (wheat). Over the next while she stopped gaining weight. Completely. When I say that I literally mean that she flatlined on the growth chart. At 2 years, she was 22 pounds 7 ounces - the EXACT same weight she had been a year earlier.
Finally, after 16 nmonths of me saying something was wrong, others started to think it (my husband included, though he had come on board the "something is wrong" train before her 2 year appointment). She was labelled failure to thrive. She was doughy - had no muscle tone at all. She was skinny in comparison. She had no hair still. Her fingernails weren't growing. She was lethargic and slept a lot. She'd run with the other kids then have to sit on a trusted adult to rest before being able to go again. Still through it all, she laughed, smiled a lot, and lit up any room she walked in to.
We started running tests. She had chest xrays (her heart and lungs were fine); she had a plethora of blood tests (some came back fine, some came back borderline); she went through 2 sweat tests to test for Cystic Fibrosis - both came back borderline positive so they ran genetic tests which confirmed she did NOT have CF. She had more blood tests. Nothing was pointing to anything but one thing was for sure - now everyone was worried. This was a very sick little girl.
I consulted another naturopath for guidance. At this point, we were dirt poor - not from medical expenses, but from me being a stay at home mom while my husband finished his phd. We couldn't afford natural therapies but our naturopath was mindblowingly amazing. She charged us exactly what we would get back from the insurance company so we weren't out of pocket. And strangers heard about our plight on a message board and sent us money to cover her tests. So test we did. A finger prick test that ran a gamut of food related sensitivities.
It came back glaringly obvious that little Miss A had some serious food issues. Gluten and dairy were out. Soy and eggs too. And garlic. So we cut it all out. It was extremely difficult given what she was currently eating, but we were determined. Nothing had worked so far, so really, what did we have to lose? Through it all, I kept nursing - we were fairly certain it was what was keeping Miss A from getting sicker given she was absorbing many of those nutrients.
After a month of being on a dairy-gluten-soy-egg-free diet, we went to get her weighed. Actually, my husband went. I couldn't bring myself to go. And she gained weight. She gained about 6 ounces, but given she hadn't gained in 14 months, this was mindblowing. I sobbed for a long time - Our hard work had paid off. She continued to gain slowly but steadily and now at 4, she's just over 30 pounds.
We were sent to a pediatric GI who said that we were obviously extremely dedicated parents, and that while she couldn't confirm this controversial test had provided some answers, she certainly couldn't argue with the outcome. We were getting our little girl back - she was starting to grow and her energy level was picking up. The GI suggested we treat her as celiac and not bother to scope her - We readily agreed.
Since then, Miss A hasn't eaten gluten. She has very minimal amounts of daiy - she can tolerate it more now, but anything over 2 pieces of cheese has her hurting. At 4, she already knows her own limits. We both avoid soy still, but she can now eat eggs (which I'm going to say has been VERY nice for baking). Her hair is growing, we have to cut her nails regularly, and though she's still little, she's not obviously tiny anymore. She's happy, VERY feisty and amazing. And she's her own little advocate telling everyone she can't have wheat or gluten and asking if she's not sure what something is.
What I learned from all of this? ALWAYS trust your gut instinct when it comes to your kids.
Wednesday, January 4, 2012
My Story
So why I'm picking today to tell my story, I'm not sure. But, it seemed as good a day as any, and I think that the more stories out there, the better.
All my life, I was always what I would describe as "unwell". I got sick often - bronchitis, colds, weird viruses. Through all of it, I consistently had stomach issues. I'd feel like I was going to throw up. Or have to run to the bathroom; or both. I never felt great. I always wondered if I'd make it to the fun events or would my "bad stomach" interfere and land me in bed. I slept a lot; I still do. I got brutal headaches, I suffered from undiagnosed depression and anxiety, I was constantly exhausted and no one knew why.
Most people thought I was a hypocondriac, or a wuss, or both. Mostly, no one believed me when I said that I just wasn't right. My parents knew something was wrong, but doctor after doctor kept saying I was okay. I was tested for everything and diagnosed with random things. It honestly was a little bit hellish. It had a huge impact on my childhood and my teenage years.
In my years of seeing doctors, I also saw 2 gastrointerologists.. none diagnosed me.
And then one day, after the birth of my second child, I read a magazine article. I felt like this giant light bulb went off in my head. I showed it to my husband and asked him why someone wrote about me without interviewing me. I called my doctor and made an appointment.
I told my doctor that I wanted a blood test for celiac because I read an article and it sounded like me. He seemed skeptical at first, asking me my symptoms and why I would think I had celiac. He agreed that a blood test would at least rule it out so why not. Then I put off going for the test for 3 weeks. I was convinced it would come back positive, and I was scared.
I went for the test. A couple of weeks later I was called back into the office to discuss my results. My doctor said "So, your test came back and we definitely need to refer you to a specialist." I said: "So signs point to celiac?" and he said "Well, normal levels are 7-10. Your are 1360." I think if I was prone to fainting, I probably would have fainted then. But I didn't, instead, I think I did an inner dance. It was like validation. Years of an inner fight that had finally been won. I had celiac disease. There was a NAME for my issues!
I went for a scope less than 2 weeks later and my disease was staged at 30 years along. I was 30 years old at the time of the scope. I had significant damage that would take a long time to heal. But I could heal. I could get better and finally lead a normal life. I could eat like a regular person (sort of..), and not worry about my "bad stomach". (I should interject that I was so scared of not feeling well that at my own wedding I had rice for supper while everyone else dined).
I went gluten free right after and I've never looked back. I've had ups and I've had many many downs. I've gone through rather extensive learning curves. I've had some horrific failures in the kitchen that I would rather forget about. But I've also had some amazing successes, like the
Fudge puddles in the GF Cookie Swap on Facebook.
But best of all, I'm healthy. It's something I always took for granted.. always feeling slightly off, and thinking that was normal. Don't settle. Always strive for more.
Maybe tomorrow I'll post about my daughter's story. She's celiac too, and at 4, she knows what gluten and wheat are, and how to tell others that she can't have them. Pretty amazing.
Tuesday, January 3, 2012
It's been a long time, but...
I didn't leave for anything in particular. Instead, I just felt like there was no *point* to my blog. It was just another blog out there about living with celiac in a time when things were tough. But now, I have more a vision. I'm making a list of things I want to blog about. I'm wanting to become more of an advocate than a passerby. More of someone who can lead. And teach. And encourage. Rather than someone sitting on the sidelines hoping someone else will do it.
In the last 2 years, I've had people come to me asking for help. Asking me how to start. Where to start. Why they're reacting to certain things. And you know what? I *have* helped. I've been there to start them out - point them in the direction of products and things to look for that they might not have thought about.
I love it. I love being able to help people. I love being an advocate. I love having knowledge.
Last night I had the worst gluten reaction I've had possibly ever. The worst part about it was that I did everything RIGHT. I called ahead. I called back again. And a third time believe it or not. I talked to the head guy. I talked to everyone I could think of. I called when it wasn't busy. And still, still I got glutened. It's something that shouldn't happen. But it did. And today, I'm suffering. I'm in a fog and I'm exhausted. But it's given me a renewal that wouldn't have happened if I hadn't been glutened. A blessing and a curse.
And a renewal. And hopefully a new pledge to help others through this blog.
Thanks for reading!
Amanda