12.09.2012

Celiac Disease and Eating Gluten Free

Even if you do not eat gluten-free, PLEASE read this post and tweet it or e-mail it to your friends.


This May will make 2 years since our 9 year old was diagnosed with Celiac Disease. I have been wanting to do a post on Celiac and gluten for some time. 
(factual information borrowed from celiac.org)

Definition of GLUTEN

: a tenacious elastic protein substance especially of wheat flour that gives cohesiveness to dough


First off, and most importantly:

"Celiac Disease is not a food allergy - it is an autoimmune disease. Food allergies, including wheat allergy, are conditions that people can sometimes grow out of. This is not the case with Celiac Disease."

So no, C will not have an immediate reaction to gluten....it's not like someone who is allergic to peanuts eating peanut butter. That is usually  immediate, and life-threatening.

With Celiac Disease, often people go undiagnosed for years. Unfortunately, because Celiac is an autoimmune disease, this can have long term effects on the body, especially the organs. The immediate autoimmune reaction happens in the intestines of Celiac sufferers.

C had been having belly aches for years. But she was little, and expressed the belly pains as hunger. So we would feed her. Yep, pasta, bread, cookies....all the things that were actually making her more sick. (Unrelated to her Cyclic Vomiting we think).  She would express the belly aches right before bed, so we would give her a snack before bed. When she was finally old enough to truly express the pain, we told our pediatrician at her physical. The pediatrician also noticed that C hadn't grown AT ALL since her previous check-up. She ordered a Celiac blood screening. It came back with "very strong" results. Endoscopy at Children's Hospital Boston confirmed this.

We immediately started a gluten free diet for C. That was May 2011.  No wheat, rye, barley or oats. In ANY form. Not so easy. It is hidden everywhere. It's in "flavorings", it is given fancy names. It is necessary to check the package, or to check with the manufacturer before giving C anything. We keep a notebook with product notes. This helps to not look something up AGAIN.

I immediately stopped using regular wheat flour and switched to gluten free mixes and flours. I threw away a lot of bakeware, my rolling pin, flour jar, etc...

We were told at Children's Hospital that even a crumb's worth of gluten can put the intestines' damage back where it was.

We have been ultra careful. We set up a 504 plan at school with the dr's assistance. The school and teacher's have been amazing. In fact, they even bought gluten free pizza, and trained the caf staff how to handle / cook it to avoid contamination. They also have a gluten free microwave in case c wants to heat something up.

At home there is no double dipping, separate toasters, constant counter wipe-downs, vacuuming and LOTS of hand-washing to avoid cross-contamination.

Unfortunately, we are experiencing our first cross-contamination today. C's belly pains are horrendous.  She went with a friend's family for the day to see a holiday display. She traveled with her cooler full of snacks and a sandwich. Unfortunately, they stopped at Ninety-Nine Restaurant and C ate off of the gluten-free menu.... which you would think would be safe.We kept our fingers crossed, but today she is suffering. This is our first experience with cross-contamination. We always wondered what it would be like if it happened. It's not fun. We never eat off of gluten free menus for this reason. Most kitchens are not set up in a way to avoid the contamination. These menus are fine for those following gluten free diets by choice, because they will not have an autoimmune reaction. C is still too young to speak up for herself when we are not with her; and honestly, this was the first time we ever let her go off a good distance from home without us. We don't blame the parents at all. They were kind, generous, and thoughtful to think of our daughter. (Could also be the stomach flu, as it is going around).Ninety-Nine has jumped on the gluten-free band wagon without taking the appropriate precautions.There just isn't enough information out there. In fact, it's amazing how many people don't even know what gluten is.

We have one little deli where we can get pizza that is not cross-contaminated...a diner 20 minutes away that cooks totally gluten-free, and a bakery 45 minutes away that is totally gluten (and allergen) free. THAT"S IT!  If I had the backing, I would open a local gluten-free bakery/sandwich shop tomorrow.

Those of you with Celiac also know about the $$$$ of gluten free food. Those of you that don't have Celiac, next time you are in the store, check the price for a tiny loaf of Udi's bread, a package of gluten-free cookies, or a bag of gluten-free flour. Triple the cost of regular food. Why? Because gluten free is a fad for many right now. So companies are riding the wave. Unfortunately for those dealing with Celiac, the weekly grocery bill can be quite steep.

Most of us have been doing it so long now we have gotten pretty good at knowing what's good, and at cooking gluten free. But I worry for the future of my child. We cannot keep her in a bubble. Celiac is a lifelong disease. C is a very out-going, bubbly 9 year old. We want her to explore the world, and not worry about what the consequences might be.

Help us spread the word. More awareness. Better Prices. More availability. Our kids are worth whatever it takes.

Thanks so much for reading this post. PLEASE either google plus it, tweet it, pin it, post it on Facebook, or email it to a friend. Awareness is our #1 defense.

xo

Visit Celiac.org for more info



15 comments:

  1. Hello,
    Thank you for sharing this information, I bought a book last week to learn more (friend's (older) child just been diagnosed and I felt I just didn't know enough). The constant vigilance for you must be a worry but you don't get a choice. The cross contamination is a point I hadn't read about and so valid - so thank you for the extra information. The prices are very high here in Europe also. I hope to post some recipes in the new year. Keep strong and can I say, 'c' is beautiful and an inspiration to us all. (Hope Stormy is doing well too!)
    Best wishes Ivan

    ReplyDelete
  2. Hi Ivan,

    You are always so sweet with your comments! Yes, it's amazing how tough the cross-contamination can be. In fact last year we had C using a small hand-sanitizer at school before lunch. Then we realized it had wheat amino acids in it! Sort of defeated our purpose! I truly look forward to your recipes in the new year. I will also be trying to get creative with baked goods this holiday season, and will post several recipes as well. Stormy is well! Thanks Ivan!

    ReplyDelete
  3. I know two people with Celiacs and there is just so much checking that goes along with. Continued good health and well wishes to your sweet daughter.

    ReplyDelete
    Replies
    1. Thanks so much. It's nice to know people are experiencing this with friends and family, and can offer us an understanding ear.

      Delete
  4. Thanks for the education, I did not know all that about Celiacs and had NO idea about the cross-contamination!!

    ReplyDelete
    Replies

    1. Thanks Lori. I am so glad we helped people understand. Thanks for stopping by!

      Delete
  5. Oh I am so sorry about little C ! I am a recently diagnosed Celiac at 47 ! I had a turbulent stomach and a sister who is a Celiac but was considered "cured" she was so terrible as a child, she is lucky to be alive she was a "banana baby". At any rate searching for help with what I thought was arthritis in my hands and feet- I was tested for everything under the sun and stunned the Dr. when I came back a Celiac. Needless to say my sister is back eating gluten free again - just as I am. I feel so badly that your little one has to deal with this :(

    ReplyDelete
    Replies

    1. Thanks for visiting. I am so glad you found what was causing your "arthritis". I am glad to hear you and your sister are back on your way to being healthy! Keep us updated!

      Delete
  6. Thank you so much for this post. My husband also has celiac disease and like your daughter, we have found that we cannot trust the gluten free menus at restaurants.
    Still, since the law was passed a few years ago, it is easier to read the packaging now. At one time, potato chips LOOKED like they might be gluten free, but did you know that they would put FLOUR on the product line to make the chips move along faster? I don't think this is done now but it was at one time. We are very happy when we find a company who has the guts to put these wonderful words on their product:GLUTEN FREE! (But you are so right that SOME Of these companies, the price is laughable, and even the QUALITY of them...fOrget about it!!)
    (Can your daughter have peanut butter? If so- here is something that I have made for years..I found it in a Southern Living recipe book from 1983. It is called MIRACLE COOKIES.)
    1 cup peanut butter (creamy or crunchy)
    1 cup sugar (I use 1/2 brown and 1/2 white) but you can use all white
    1 egg
    1 tsp vanilla (If you have it). Mix the PB and sugar together well (I use a fork). Mix in egg & vanilla. KEEP MIXING. Roll into balls and place on ungreased cookie sheet. Take a fork and press down one way and then another, making a criss-cross pattern. Bake at 350 degrees for about...well, it depends on your oven, sometimes it is 12, sometimes 16 minutes. Take out and let COOL, at least 10 minutes or so. If you try to touch them when they first come out, they will crumble. THESE ARE GREAT COOKIES. I don't like peanut butter and I love these myself. IF your daughter can have PB, then you could make these and keep them in a tin, and they last for at least a week, if you can keep out of them for that long!!
    P.S. Tell your daughter my husband was diagnosed with celiac disease in London when he was only 3 years old, he grew to 6' 2"!!
    Kay

    ReplyDelete

  7. I agree, we are lucky that more companies are labeling allergens. A lot of companies, like Lays, also have very helpful lists on their sites. My daughter misses the little fish crackers terribly...and Doritoes are now wheat free! (of course I'll keep my eye on that one!) Thanks for the cookie recipe. I have made a very similar one without the egg, and it is yummy. I will try yours, as I just posted on twitter that I need some good cookie recipes. I love peanut butter, so your cookies will most certainly be on our lists! I have informed C of your quite tall husband....she smiled....th first in 24 hours, as she is still under the weather. Happy Monday.

    ReplyDelete
    Replies
    1. So glad to hear of that SMILE from your pretty daughter, you have made my day! :-)
      And I must tell you, how could I forget to tell you...CHOCOLATE!!! If your sweet gal can have chocolate, add a handful (Or two!) of chocolate chips to the mixture. It was not in the original recipe, but when you have made something for 29 years!
      OH, and if you like, you can sprinkle peanuts or pecans on the top, only if you want to, I just started doing that but I don't always have them!

      Delete
  8. I can't imagine adjusting to life having this disease - it's so tough these days to find healthy and affordable options for people with this condition. I hope the "wave" they are riding with charging more because of the "popularity" goes away soon - it's our health, and it's so important!

    ReplyDelete
    Replies

    1. Thanks Tracy. We have adjusted ok....it's just hard to see your kids go through things that kids shouldn't have to deal with. She is a trooper! Congrats to you and your husband!

      Delete
  9. Thank you for stopping by ! :) Love Ivan`s blog. Sorry to hear about your daughters food problems, We have a lot of food allergies in our family also. It can be hard to find good and healthy alternatives.

    ~ Aina ~

    ReplyDelete
    Replies

    1. Aina, thanks to you for stopping by! yes, the "healthy" part can be hard...especially with picky kids!

      Delete

Thanks for chatting!

Related Posts Plugin for WordPress, Blogger...