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Saturday, March 9, 2013

The Flipside of Celiac - A spouses perspective

I am sorry I have been flaky this week; I have had a lot of special posts that take a lot of time and research.  This is another special post.  My husband and the whole family has put up with so much this past five years and they have had to change their lives a lot.  Since everyone always talks about what it is like to have to live a gluten free lifestyle, but no one ever talks about what it is like to live with someone who has celiac, my husband wrote a post.  Celiac from my family’s perspective, what it is like to live with someone with celiac and what he has had to give up.  Without anymore preamble here is his post.  


I have been living with a diagnosed mild celiac spouse for more than 10 years and these are my observations and trials. Everyone that has wheat allergy, gluten intolerance, or full blown celiac can tell you that it sucks, but there is something that is even more difficult… being the person that loves them and has to change their whole life for them.

My wife, Kat, would at first just unconsciously stay away from gluten, but then it got to the point that we couldn’t eat big meals without her having to run to use the bathroom right afterwards and being embarrassed about the experience. This side effect led to us eating out less and less. Finally it got to the point she needed to be tested for what was going on. This was complicated by her other medical conditions that masked her celiac.

When she was diagnosed, I was deployed, and I couldn't help her during this life change.  I was frustrated, angry and scared for what this meant for her and me.  Immuno what?  Can't eat bread huh and also have a problem with milk?  Celia and intestinal internal allergy?  I couldn't wrap my mind around all these life altering changes and my wife had to start dealing with them without me.  I'm the provider and defender and I couldn't protect her from this.  I couldn't help her deal with this.  Once I got home, it was one painful lesson after another.

When we found out that she suffered from mild celiac we had no idea how much that would affect us as a family, not just Kat. It affected us as a family in a revolutionary way. We went from being able to go out anywhere and eating anyway we wanted to, to a much more controlled environment. We had to check ingredients on everything, if restaurants served gluten free options, and to make sure that we didn’t cross contaminate anything. I was a bad instigator of cross contaminating my wife. She loves her unsweetened ice-tea and I would unconsciously steal sips of her drink after eating something with gluten, and make her sick. Now I know I wasn’t doing it on purpose. It is something Kat and I had been doing for a long time, ever since our dating days, but it led to us having to rethink our ways of eating and sharing. No longer could we share drinks, condiments, or share food if we were out and I was eating something with gluten. No longer could we kiss right after eating if I was eating gluten. In a real way her disease became ours. Not just mine, but my families. We realistically couldn’t keep everything in the house separate and it was impractical to have a gluten side and a non-gluten side. We had to make it so that almost everything in the house was gluten free, to keep the person we love healthy and happy. Communal meals became gluten free. Old cooking styles had to be rethought or thrown out (baking). Meals had to be reworked to have no gluten and ingredients replaced to make things work. Sometimes these meals became bad experiments and sometimes really good meals to be repeated.

These following things have been lessons learned and would have made a world of difference had we as a family known them to start with. Things we as a household have had to give up; breakfast pastries are a no go, pasta, pizza, gyros, donuts, canned soups and breaded anything… ie. appetizers, breaded fish and chicken, and most desserts. We had to give-up just about all fast food joints, but we did learn a little trick to get around this. Get a gluten free bun, warm it up and put in a sealed Ziploc bag. Then order something without a bun and then construct your own gluten free fast food burger. At home, we had to give up just about everything that is pre-prepared and most of the sauces and dressings are out… if you read the labels thoroughly you will find gluten hidden in the ingredients. Things we have discovered; Chex ™ (www.chex.com) cereals are awesome for gluten free people as well as non-gluten free people. Corn pasta is the best for spaghetti. You can use hash-browns as a crust instead of a breaded crust for casseroles. You can use GF graham crackers for a pie crust. GF pizza from restaurants sucks and the best is homemade using Bob’s Red Mill ™ (www.bobsredmill.com) for the crust. GF cornbread can be used in place of rolls or biscuits as long as they are warm. The best soup is made at home and not out of a can and you can control the ingredients. Dust off or buy a slow cooker for soups, stews, roasts, and you will use it. Also, get a gluten free toaster… GF breads need to be toasted to an inch of their lives… or they fall apart. You consider getting a bread maker for homemade GF bread that is fresh, warm, and usually cheaper and better tasting than the stuff at the store. If you decide to make your own bread try using Pamela’s ™ bread mix (http://www.pamelasproducts.com). These lessons were all learned at great expense to us as a family both monetarily (GF food is not inexpensive) and time.

The life style change is trying and worrisome. You need to be consistent. You need to be conscientious of the person you love and know that what you are giving up is keeping them from pain and misery. Debilitating gastronomic distress is not something fun to experience for anyone and if you love your family member you will suffer by proxy. My experience as the partner to someone with celiac is continuing and I love her so the challenges are no different than any other compromise you would do for the person you love. I hope you find a happy balance in your gluten free house and living with a gluten free person.

1 comment:

  1. We often don't think about diseases and illnesses in how they affect spouses and those around us. Thanks for this perspective.