27 September 2008

celiac question answered~

You said I could ask a question and since I'm new to your blog......is your husband a celiac? I've done a lot of research into it over the past two years. My son and I both suffer from intestinal disorders which I believe are related to wheat/gluten. One time we went off gluten for two weeks and life was grand (except we were so hungry). What prompted you to go gluten free?


Let's see. Yes, my husband is a Celiac. So is my oldest daughter. None of our other children really have any symptoms or problems, so they've not been tested. We did find out that Anna is a double-gened Celiac, meaning she got a gene from each of us, so we do plan to have our other children tested in the coming months as that greatly increases the likelihood that they could have gluten issues in the future. **update 12.2008** We found out our third son, Ethan, is also a Celiac. You can read about why we chose to have him tested next and how it all came about here.

For a little history on how we came to learn that he was a Celiac, you can read a pretty thorough description of how his symptoms started and how we learned it was Celiac here:

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The way his symptoms started was pretty sudden, and through a lot of research I've learned that Celiac can almost lie dormant or at least asymptomatic for years until it is triggered by something. I sincerely believe that at first Glen did have giardia (a parasite) that triggered the onset of the Celiac. He went along for 31 years being pretty much fine, other than having a weak stomach, and then all of a sudden, he got scary sick and literally lost over thirty pounds in a couple of months. He became violentlly ill. It was bad. We had some initial trouble finding a doctor that would investigate and didn't want to just treat his syptoms, but once we saw an actual GI doctor, he immediately ordered a colonoscopy (which was fine, Celiac affects the small intestine, not large), and a bronchoscopy. He immediately suspected Celiac, and it was furthur confirmed via blood testing within a week. Since Glen went off gluten, he has felt fine.

Glen and I also believe it was the Lord's mercy that allowed us to discover that Anna also has it. She has always suffered with stomach problems, but nothing nearly as violent or pronounced as Glen became. She was also always a big bread lover :o) Once she heard that Dad was going off gluten, she immediately thought maybe it would help her as well, and on her own, she went cold turkey. She also immediately felt better.

This was a big flag to Glen and me that something was up with her as well, as how many nine year olds do you know that will voluntarily give up homemade rolls, pizza, and a host of other wheat containing foods that she loves? She struggled through it a little, but as she felt so much better, she stuck it out. A few months later we had her tested via an online testing facility (that involved a sample collection I won't go into detail about, but didn't involve blood - haha. We also had her genetically tested which involved a cheek swab.) It was really a relief for her results to be positive as it gave an explanation as to why her stomach had been bothering her for so long.

As far as the hunger thing, it was and is an adjustment. Thankfully, there are a few factors that have made it quite a bit easier.

First of all, my husband is very easy to please. His Dad died when he was seven, leaving his mom with very little life insurance, and four children to raise. He grew up just thankful for food in general. He is not picky, and he doesn't complain. In all honesty, I've not heard him complain one time about anything he cannot enjoy anymore. Not once. He's a trooper :o)

Secondly, we live in an area that has a very big natural foods/organic community. Gluten free items are found in not only our specialty stores (Whole Foods, we're getting Trader Joe's, etc.), but there's a fairly good selection in many regular grocery stores. While it can definitely get pricey, it is available. I've also found that Amazon has excellent prices on the gluten free items we use most often. I've also found that Pamela's Baking Mix (I buy it in bulk through Amazon) can be substituted in almost any recipe for flour and the result has been great every time. This has allowed us to enjoy pancakes, biscuits, cookies, cakes, etc. that are virtually indistinguishable from their gluten-laden counterparts.

In addition, I am so thankful I live when information is available in seconds. The internet community has been a lifesaver. There are an abundance of gluten free cooking blogs and information sites.

The hardest things have been eating out and parties. Glen can manage just fine anywhere, but I have to remember to pack Anna her own snack for special things at church, friends' houses, etc.

I know that technically, when one is a Celiac, it is supposedly very, very important that one is 100% gluten free, and that some Celiacs can get seriously ill from literally a crumb of gluten. Thankfully, that is not the case with Glen or Anna, so it allows us a little flexibility. Our entire house is not gluten free. Our other children, as well as myself, do eat sandwiches, and regular gluten containing foods (pizza, macaroni, other treats on occasion) as they are cheaper, and then I only have to make/buy the gluten free treats for Glen and Anna. I have to weigh cost vs. convenience since I'm feeding a family of eight here. For some things, like main meals and baked goods, I make completely gluten free as it's too time consuming to make two kinds of spaghetti, two kinds of casseroles, two batches of cookies, etc. But for some treats (bagels, cinnamon rolls, pizza crusts, pretty much anything that is "premade") I buy separate as the premade things are very pricey. I guess basically, if it's something I can make, I make it all gluten free, but if it's something I have to buy premade, then I usually buy the regular and gluten free varities.

The transition to making gluten free meals was actually much easier than I anticipated. Much easier. If you can really tell a difference in how you feel when off gluten, I would highly encourage you to find a few recipes online that sound good, make a grocery list, and try it for a few weeks. You will also find that most of your regular recipes can be pretty easily adapted. I'm glad to help you in any way I can. Most of our staple meals around here that formerly contained gluten (casseroles, pasta dishes, pizza, etc.) were VERY easily adapted to be gluten free. And on a more serious note, if you truly are Celiac, and not just gluten sensitive or intolerant, as I'm sure you've learned from your research, it is important that you remove gluten from your diet as it can lead to a huge variety of health problems, including cancer.

And you know, since you asked and everything (ha ha) my current number one gluten free concern is that I really hope by the time Anna gets married, bakeries will be skilled in making gluten free wedding cakes :o) That is most definitely not on my list of talents!

Well, I've answered your question and a lot of other ones you didn't ask :o) I told you all I was bored. This kind of stuff has been really helpful for me in our transition to a gluten free lifestyle, so I kind of wanted to put it out there for anyone else who might benefit.

So there you have it....everything you ever wanted to know about our Celiac adventure....and then some.

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Anonymous said...

Wow - that sounds like a scary time. My friend who has it gets the skin rash and actually does not suffer from the stomach issues except that she was malnourished. Her celiac showed up as well when she choose to become healthier by grinding her own wheat to make bread. Thanks for answering my question.

Christine said...

Great informative post. I came over from the MOMYS digest out of pure curiosity. I have a few friends that found life to be simpler without gluten and loved learning more about it.
Christine @ Live to Learn

Rachel Wilson said...

Yes that would be wonderful. Give Coocal my cell number and I will meet her somewhere friday. I have been praying for you and for glen and all your kids individually every day. I know it has to be trying on you all right now. You keep growing that baby!

Tisra said...

Sounds like, though bored, you are doing well. I thank God for the sweet little one that you are giving room and board to right now, and pray that there is abundant grace for the rest of the family in mom's "absence"!

On the gluten issue, my niece has sensitivities to wheat/gluten and when she stayed here for 5 days while her parents went on a trip, we ALL ate like that to make it easier. I felt really good and healthy so I've been limiting our diet, too (though not completely!). Soooo good that so much is available these days!

"How can it be a large career to tell other people’s children about arithmetic, and a small career to tell one’s own children about the universe? How can it be broad to be the same thing to everyone, and narrow to be everything to someone? No; a woman’s function is laborious, but because it is gigantic, not because it is minute. I will pity Mrs. Jones for the hugeness of her task; I will never pity her for its smallness." ~GK Chesterton

2012 November

2012 November