Now, all of this works just fine as long as the meal is taking place in our home, but what about the times that you would really like to have us over for a meal in your home? How can we make that work? (As a side note, please know that I understand the inconvenience of dealing with my situation, and I will never be offended if you feel like it is more than you are able to accommodate. If you don’t have a strong desire to open your home, we are always happy to open ours!)

To be honest, we haven’t quite worked out all the details in this area, but there are some basics that will help keep me safe. Let’s start by addressing a couple of things I might encounter in your home (outside of the kitchen) that could cause me to have a reaction. One big issue would be flour in the air. If you’ve ever done any baking, you’ve probably noticed the tendency of flour to end up in places that you don’t expect. You may have also seen the little poofs of dust that fly as you drop a scoop of flour into your mixing bowl. According to my research, gluten can actually hover in the air for anywhere from twenty-four to forty-eight hours. Once the flour is in the air, it has the potential to end up in my system and make me sick. With that in mind, if you have used any significant amount of flour in the previous day or two, please don’t let me come into your home!

Another issue could be surfaces that might have gluten crumbs or residue on them. If you tend to take food into certain areas of your home (like the couches in front of your television), please let me know so that I can be careful about what I touch. However, if you feel like this is such a big issue in your home that there isn’t really a safe area for me at all, perhaps you could drape a blanket over a chair or section of a couch to create a special “gluten-free zone” for me.

Once we’ve covered these basics, we can move on to the eating area. A starting place would be to wipe down surfaces like tables, chairs and countertops with a wet cloth. In fact, wiping them down twice would be even better! I’ll also need any eating-ware and serving utensils to be rinsed before use (a fresh dishtowel is also important).

And this brings us to the actual food. Here are some possibilities that come to mind:

1. I can prepare food for everyone in my kitchen, and then bring it all to your home.

2. We can bring the food for our family, and you can prepare food for everyone else.

3. I can bring food for myself, and you can prepare a gluten free meal for the rest of our family without having to be overly concerned about cross contamination.

4. I can bring food for myself, and you can order gluten free food from a restaurant for everyone else. Some options are Jason’s Deli, Sardella’s Pizza, or Chipotle.

5. If you have a grill and would like to prepare something like burgers and/or hot dogs (Hebrew National and Nathan’s are GF), I can bring gluten free buns. However, this will mean that unless you never prepare gluten on your grill (not just bread products, but many marinades also contain gluten), the grate for your grill will need to be taken off and washed with soap and water, or be heated to a temperature of 600° or higher for 30 minutes. Another issue in this scenario is condiments.  While basics like mustard, ketchup and mayonnaise are usually gluten free, any open container that has been “double-dipped” while preparing gluten food is no longer safe. If you plan to use squeeze bottles that have already been opened, please wipe down the outsides of the container with a wet cloth (or better yet, wash them under running water).  Also remember to make sure that your kitchen surfaces have been wiped down thoroughly before beginning any preparation, and that all knives, mixing bowls and other utensils are washed and dried with a gluten-free towel (but please don’t use wooden utensils, as these can absorb gluten). If you are planning to use any ingredients other than plain ground beef, cheese, veggies and fruits, you can touch base with me to make sure they are safe.

But are these really all of the options? Isn’t there a way for you to prepare a whole dinner I can eat? I’ve been trying to finish this post for a couple of weeks now, and I keep getting stuck at this spot. The reality is that even option #5 makes me pretty nervous.  I want to go further; to say, “Sure, just make a meal for me and I will eat it!”

…and then my stomach starts to churn as I think of all the ways gluten can sneak in. I think about the fact that non-stick cookware, wooden utensils, and unglazed stoneware can all absorb gluten. I remember the time I got sick from plain chicken breasts that weren’t minimally processed (the broth used in the processing contained gluten). It’s not that I don’t trust you; it’s just that the learning curve is so high, and the consequences of a simple mistake are so huge. My family needs me to be here for them—and if I get even a little gluten, they will lose me for the next three weeks! (Not everyone with Celiac/gluten intolerance  is as sensitive as I am.)

So for now, these are the options that are on the table, so to speak. I pray that my sensitivity level will drop soon, and that all these precautions will no longer be necessary. Until that time, however, perhaps my issues can serve as an extra reminder of the need to be deliberate and purposeful in our fellowship, and help us all learn more about what it means to truly share each other’s burdens.

Many blessings in Messiah,

Esther

Dear friends,

Here in the Geoffrey household, sharing a meal together is a really important thing. We believe that eating together is a crucial form of fellowship, especially in light of seeing how the early believers broke bread together daily from house to house. Eating together goes beyond sharing thoughts, ideas and experiences with one another—it is a tangible expression of shared lives.

As you might already know, my gluten issues have drastically changed our lifestyle. Discovering that other members of the family have at least some level of sensitivity to gluten has only compounded the issue. We have to maintain a high level of vigilance all the time—not just about what I eat, but about what I touch (because things you touch have a funny way of somehow finding their way into your mouth), what’s in the air I breathe, and what possible contamination my food may have encountered along it’s journey to my mouth.

When I first heard about people who got sick at the slightest amount of cross-contamination, I thought it was silly. I thought, “How could anyone possibly be that sensitive? Surely it is all in their minds! Maybe they’re just paranoid, or trying to get attention.” Then it happened to me. The first year of being gluten free was filled with incidents where I accidentally made myself sick. Each time, I would spend three weeks basically incapacitated by my reaction to hidden gluten. Here is an excerpt from a message I wrote to our local celiac e-mail group after being GF for seven months:

I know that learning to live with celiac is a process, but is this how I should expect things to be from now on? Will half my life be spent trying to avoid any contact with gluten, while the other half is spent recovering from gluten that somehow slipped past me?

So why am I sharing this with you? Because I need you to understand the emotions that surge through me every time I think about eating food prepared outside of my “safe” environment. It’s not that I don’t trust you—it’s just that I know how difficult it is to wrap your mind around all the different ways gluten can slip in. I tried to prepare both gluten and gluten free food in the same kitchen for several months, and was completely unsuccessful. Maybe it is possible for some people, but I can’t imagine how.

That said, I understand that some people show love by purchasing gifts of food or by cooking for other people (I fall into the second category myself). And when you have relationship with someone, you like to invite them into your own home, rather than always being the guest. The issue, then, is how we can make these things work for my situation.

The first category is purchasing food, which brings us to the issue of gluten free labeling. The quick story on this topic is that there are currently no regulations as to what a manufacturer has to do in order to use the term “gluten free.” That means that even though a product may have GLUTEN FREE written in big letters on the label, it could still be made on the exact same equipment used to make gluten-filled foods. I learned that the hard way with a box of frozen waffles. This is why I stick to a limited number of trusted products. I’ve called the manufacturers, or researched their practices online, and have verified that the food is safe for me. While there are new “gluten free” products popping up every day, I generally have no feelings of excitement at the idea of trying something new—in fact, the feeling is more like overwhelming anxiety (with a touch of impending doom).

So what can you buy? It all depends on your reason for buying something. If your desire is simply to help share the financial burden of the meal, and you feel comfortable just putting a couple of dollars in the pushke (that’s Yiddish for “box”), that is always a blessing for us. Just find the gray wooden box (the lid shows a little girl with her kitty cat) on the counter in the dining room and slip in whatever amount you want to share. However, if you really like to participate in the food with a tangible gift, then you can always purchase a brand you have seen us eating before (or if there is another specific thing you want to bring, you can call to ask what brands are safe), and drinks are generally fine. Fresh fruits and vegetables are also a great option.

Which brings us to the topic of cooking. What if you buy some things to make a nice fruit salad, and then take them home and prepare them in your kitchen? I probably wouldn’t feel comfortable eating the fruit salad (although I would have no problem with you bringing it into our home for everyone else to share). But you are more than welcome to use my kitchen! In fact, if you have a whole dinner that you want to share, we can go over your recipes to figure out which ingredients are safe and which need to have substitutions. Once we get the details worked out, you’re welcome to take over my kitchen, and I’ll be your assistant for the evening! But even if you don’t have something specific to make, it’s always great when people come a little early and help with the food preparation.

Now, all of this works just fine as long as the meal is taking place in our home, but what about the times…

Go here for part two of my letter.

Well, one of my first discoveries—which I’m sure others have experienced as well—is that a gluten free lifestyle is time consuming.  This is especially true if you are also trying to eliminate chemicals, pesticides, preservatives, and non-organic meats from your diet—and even more so if you simply can’t afford to buy the pre-made GF versions of some basic items we most take for granted: flour, bread, cereals, crackers, etc.  Add homeschooling into the mix, and that makes for some very full days, weeks… and apparently years.  In the midst of all the demands of life, blogging just hasn’t seemed like much of a priority.

And yet, my dear husband keeps gently reminding me that I still have a lot to offer.  At each new time-saving discovery, and each yummy recipe that has everyone raving, he says, “Wow, this would make a really great blog post!” As he so wisely observes, if I don’t pass on what I’m learning to others, it will only have been a benefit to me. That really does seem like a huge waste!

So, I’m going to try again.  I’m not going to be so naive as to think I can document everything in my life that could possibly be helpful to another person. When I have an overwhelming goal like that in front of me, I get paralyzed and do nothing at all… but that’s material for another blog post. I’ve made a commitment to one blog post—or one hour working on a blog post—each week. That’s a more manageable goal for me, and will hopefully give me the opportunity to share some helpful things with you along my journey.

This makes post number one.  Hopefully many more will follow!

Since removing all the gluten from our home, I now have a new appreciation for our “daily bread.” At first, I was the only one not eating gluten, so I tolerated the Pamela’s Products mix and decided that it didn’t really matter if my bread tasted great or had a nice texture. The Pamela’s mix wasn’t bad, but it was very dense and quite a bit sweeter than I liked. Soon, however, we realized we needed to take all the gluten out of the house. Our “daily bread” suddenly became a big issue.

For the first couple of days the boys didn’t complain too much, but it wasn’t long before two-year-old Hosea just decided that he wouldn’t eat it. The other two boys didn’t refuse, but they were certainly less than enthusiastic. To make things more difficult, Kevin is a “recovering” diabetic (he is no longer taking medication, but controlling his diabetes solely with diet and exercise), and the Pamela’s bread is extremely dense. In order to make a sandwich with a good balance of protein and carbohydrates, he had to eat just half a sandwich stacked with the amount of meat and cheese he would normally eat on a whole sandwich. We definitely needed a new solution to the bread dilemma.

The first thing I tried was modifying the Pamela’s mix. I added various combinations of more liquid, more yeast, and more starches, but all my attempts completely failed. Several times, I ended up with gummy messes that were completely inedible.

Next, I tried the Gluten Free Cooking School Finally, Really Good Sandwich Bread recipe. This was a huge improvement over the Pamela’s, with a great flavor and light texture. My only complaint was that unless it was thickly sliced, any condiments like mustard or mayonnaise seeped through and got all over our hands. While this recipe was definitely my fall-back plan, I decided to keep looking.

One of Kevin’s favorite sandwich rolls (in the pre-gluten-free days) was Aunt Hattie’s Potato Hamburger Buns. With that in mind, I did a search for “gluten free potato buns” and came across a recipe for Gluten Free Potato Bread. This was a great base recipe for me to begin tweaking, and after much experimentation, I came up with a bread that my whole family loves. Not only can it still hold in the condiments when sliced thinly, but it is also light, soft, flavorful and stays fresh in the pantry for a few days. To top things off, one slice is just a little more than one carbohydrate exchange, which works well for the diabetic diet.

There are two things about this recipe that are different from most other gluten-free bread recipes: the size of the loaf and the baking method. Most of the bread recipes I have found make just one loaf, baked in a Large Loaf Pan. I resized my recipe to make two smaller loaves, baked in Medium Loaf Pans. The baking method involves placing the loaves in a non-preheated oven (adapted from Carol Fenster’s French bread recipe) in order to speed up the baking time and get a thoroughly cooked loaf without over-browning the crust. I get great results every time, so let me know if this works for you!

Gluten Free Potato Bread

2 ¼ cups warm water (about 110°F)
2 tablespoons active dry yeast
4 ¼ cups Esther’s Gluten Free All Purpose Flour Substitute
1 ½ teaspoons salt
1 ½ tablespoons xanthan gum
2 teaspoons baking powder (optional)
¾ cup instant mashed potato flakes
¾ cup instant nonfat milk powder
4 large eggs
3 tablespoons vegetable oil
¼ cup honey

1. Proof the yeast. (Stir yeast into the warm water, and allow to sit for 5-10 minutes. Mixture should become foamy ( photo); if it doesn’t, your yeast is not active and needs to be replaced.)

2. While yeast is proofing, mix together dry ingredients in the bowl of your stand mixer. (I use a wire whisk to make sure everything is thoroughly combined. If the xanthan gum is not well incorporated before liquid ingredients are added, you will end up with gummy clumps that won’t disolve.)
   TIP: During this step, you can make your own time-saving bread mix. Just place a ziplock bag next to your bowl, and each time you measure an ingredient into the bowl, put the same amount into the bag.  Store these dry ingredients to use the next time you make bread.

3. Add eggs, oil, honey and water/yeast mixture to dry ingredients.

4. Using dough hooks, begin mixing on lowest speed until all ingredients are combined ( photo). Then, increase speed slightly and beat for about three minutes. (To me, the dough looks like regular yeast bread dough that still needs a cup or two of flour, or like a really thick quick bread batter.)

5. Divide dough equally into two, greased Medium Loaf Pans ( photo). With wet hands, press the batter into the pan, smoothing the top as much as possible ( photo). You may need to periodically re-wet your hands. (For a softer crust, rub 1/2 teaspoon of oil on the top of each loaf.)

6. Loosely cover pans with plastic wrap and let sit in a draft-free area for fifteen minutes. Then, remove plastic wrap, and place your bread pans on the middle rack of your oven (DO NOT PREHEAT).  Set the oven to 425 degrees, and set a timer for 35 minutes. Check the tops at 25 minutes, and if they are browning too quickly, cover with an aluminum foil tent ( photo).
   TIP: If the bottom crust of your bread browns too much, place a baking sheet on a second rack just below your pans to act as a heat shield.

7. Take bread from oven, and immediately remove loaves from pans and place on a wire rack. Cool completely before slicing.

When I removed gluten from my diet, one of the first things I looked for was a substitute for the standard all-purpose wheat flour I used on a regular basis. I quickly found that everyone has their own idea of what such a substitute would be. I also discovered that there is no perfect substitute. However, there are definitely mixtures that come pretty close (scroll down for my recipe).

The first mix I tried was Bob’s Red Mill All Purpose Baking Flour. It was horrible! Their mix uses Garbanzo/Fava bean flours, which have a very distinct flavor and aftertaste. I’ve read some reviews of the product, and it seems like there are two camps: those who love it and those who hate it. I’m definitely in the second camp!  

Then, I visited the Gluten Free Cooking School blog, and found some recipes for flour substitutes. I like to avoid soy as much as possible, so I tried the Gluten Free, Soy Free All Purpose Flour Mix. This was a big improvement over Bob’s Red Mill, but had a distinctly corn flavor to me, so I tried taking out the masa flour. First, I substituted quinoa (I know some people love it, but it tasted gross to me—in fact, I couldn’t even stand the smell of it), and then I just used a little extra of some of the other ingredients, but the cornstarch still gave it a taste that seemed “off” to me. While I ultimately didn’t end up using the mix, I learned some great information about ratios of flour to starch.

Next I found the Gluten Free Gobsmacked blog, and the flavor of her flour blend was much more appealing to me. This was my first introduction to sweet rice flour (also called glutinous rice or sticky rice), and I was quite impressed. However, this mix was very short on (or more like completely lacking) whole grains.

By this point, I had gotten a feel for the different options and decided to try my hand at my own all-purpose flour substitute. I wanted to use around half whole grain flours for taste and nutrition, and half starches that would give a nice texture and lightness to the finished product. In the end, I think I found a really great balance (at least to my taste buds).

Esther’s Gluten Free All Purpose Flour Substitute

3 parts brown rice flour
2 parts sorghum flour
2 parts sweet rice flour (also called glutinous or sticky rice flour)
1 part tapioca starch (also called tapioca flour)
1 part potato starch (do NOT use potato flour, as it is very different)

I formulated this recipe in parts so that you can make any amount of all-purpose flour you want. If you only need a small batch, use a 1/4 or 1/3 cup measuring cup. If you want a whole canister, use a 1 cup measuring cup, or even more.  Whatever measuring device you decide to use, just add each ingredient according to the number of parts in the recipe.

Rather than using measuring cups, my favorite way to make up the mix is to use a kitchen scale (my husband has Type 2 diabetes, so we already had one on hand for measuring his portions—more on that topic in a future post). The advantage of the scale is that you can just pour the different flours into your container without having to measure and level each scoop. Just pick an amount (i.e., 100 grams or 12 ounces) to equal one part, and add each ingredient according to the number of parts in the recipe. If you want to invest in an inexpensive and extremely functional scale, I’ve been very happy with my EatSmart digital scale.

It is very important to thoroughly combine all the ingredients. I start mixing with a wire whisk, and then put the lid on my container and shake it for a while. You want to make sure that there are no streaks of varying color when you are finished.

I’ve used this mix in my amazing Gluten Free Potato Bread, Gluten Free French Bread, and Gluten Free Maple and Pecan Waffles (recipes coming soon!), and also substituted it for regular flour in normal recipes.

Just remember that you must use Xanthan Gum and/or Guar Gum along with this flour mix if you don’t want your finished product to crumble and fall apart. The general rule of thumb is:

• 1 teaspoon gum per cup of flour for yeast breads and pizza dough, and
• 1/2 teaspoon gum for quick breads, muffins, cakes and cookies.

When using these gums, be sure that you mix them into your dry ingredients very well (I use a wire whisk) before adding any liquid. Otherwise, you will end up with gummy clumps that won’t dissolve. I purchase Xanthan Gum at my grocery store, but it can also be bought online. I’ve never personally used Guar Gum, but I’ve read that you can get great results by using equal parts of xanthan and guar gum.

I hope this mix will work well for you also.  If you find it lacking in some way, you can always experiment with different combinations until you get a flavor and texture that you really like. Everyone’s tastes are different, so go with what you enjoy. You may have some flops along the way, but don’t give up!  I’d love to hear how you like this mix and what changes you make, so feel free to add a comment below.

So where do you buy all the gluten free flours? Well, some grocery stores and health food stores carry them, but they are quite expensive. I’ve finally settled on buying my brown rice and sorghum flours in 25 pound bags directly from Bob’s Red Mill. When it arrives, I use my scale to separate it into 5 pound bags which I vacuum seal with my Food Saver. If you don’t have one, I’m sure you could use ziplock bags. We do have a second refrigerator, so I am able to keep my flours there. I’ve read that these flours tend to spoil more quickly if they are not refrigerated. Although all the flours and starches I use can be purchased from Bob’s Red Mill, I’ve found that I can get great deals on the glutinous rice flour, tapioca starch and potato starch at the Asian market around the corner. I know that some people are concerned about using flours that have not been labeled as gluten free, but I have not had any reactions from these particular products. I did see sorghum flour there as well, but it had a disclaimer that it was produced on the same machinery as wheat, so I don’t use that one.

The Journey Begins

Fast-forward nine years and two children later, to early spring of 2006.  I began to have an intense pain in my right side that just wouldn’t go away.  After a while, it subsided to a dull ache, but it was constant and accompanied by a completely debilitating fatigue that left me laying on the couch feeling like I couldn’t even move my limbs.  Enter the doctors!   

The first step, of course, was a battery of tests by the family doctor, who suspected my gall bladder.  All the bloodwork was fine, but the sonogram showed a “mass” on my liver.  When words like “cancer” are used in a doctor’s office, you really don’t notice that it was preceded by “only a remote possibility.”  Needless to say, this was a very stressful time for us!

At that point, I was passed on to a gastrointerologist who immediately ordered a CT scan and an MRI.  He assured us that I most likely had a benign tumor on my liver (even though he wasn’t sure what type), but that it wasn’t causing the pain.  Though I didn’t have any stones, he still suspected my gallbladder.  The next step was a HIDA scan.  In this test, you are injected with a radioactive dye that collects in your gallbladder.  Next, you are given a medication to make your gallbladder contract, as you lay under an imaging machine so the technicians can monitor how well your gallbladder functions.  I’ll never forget laying on that table as they walked into the room with a large box bearing the big, yellow “WARNING: RADIOACTIVE MATERIAL” icon.  There is something extremely unnerving about seeing that box opened, a vial removed from it, and then placed into the IV in your arm!

When the test results came back, the GI doctor was confident we had found the answer.  My gallbladder had barely contracted, and was considered non-functioning for all intents and purposes.  We were told that nothing could be done to repair the gallbladder, and that the only option was to remove it.  At that point, months of pain and fatigue had passed, and I just wanted it over.  Then, a week before the scheduled surgery, the other shoe dropped… two lines showed up on the pregnancy test instead of just one.

The next three months were extremely difficult.  Not only did I have very intense morning sickness, but the pain and fatigue continued.  My wonderful husband took care of all the household duties in addition to his own work, and the two boys took everything in stride.  We were told that the surgery would be safe during the second trimester, so we agreed.  Everything went smoothly, and after a few days, I was feeling much better.  I was still fatigued from time to time, but just assumed this was a result of pregnancy.

Looking for Answers

In January of 2007, our third son Hosea was born, and I was looking forward to putting all these medical problems behind me.  Then, in June, I noticed an intense ache in my lower left abdomen.  By the next day, it was excruciating, so we went to the emergency room.  After tests for an ectopic pregnancy or ovarian cysts turned up negative, they were about to send me home when the doctor came over and pressed on my side.  This time, I almost went through the roof.  They sent me for a CT scan, and then told me I had diverticulitis that had become infected.  I was given two strong antibiotics, and told to avoid all nuts, popcorn, and small seeds for the rest of my life.

While visiting a new GI doctor to monitor the size of my liver tumor, I mentioned the ER visit and she wanted to run more tests.  At this point, the thought of invasive procedures (without pain medication since they make me very ill) was too overwhelming, and I cancelled the appointments.

Over the next year, I began to have more and more diarrhea.  I could count on having at least two or three episodes each week.  My emotions were also beginning to swing wildly, which was very unusual for me.  We assumed that this was a result of my hormones.  A friend of ours is a DO, specializing in osteopathic manipulation, and he thought he might be able to help.  After several treatments, I saw no improvement in my intestinal or emotional issues (although the treatments regulated my menstrual cycle for the first time in my life). 

In May of 2008, I once again began to have intense abdominal pain, this time on the right side.  Back to the ER we went, and this round of tests showed no evidence of any diverticulitis.  Instead, they said that my appendix was slightly inflamed and should be removed before it ruptured.  The fact that I had no fever and was having diarrhea constantly didn’t seem to set off any red flags to the doctors.  After much prayer, as the pain was subsiding, we decided to take the decision out of the doctors hand.  We refused the surgery, and went home against their recommendation.  Although they insisted that I should at least take some more strong antibiotics, I didn’t even get the prescriptions filled.  My appendix is still doing just fine. 

Over the next year, the symptoms just kept getting worse.  It got to the point that I couldn’t remember the last time I had gone a day without diarrhea. I was also struggling with bouts of depression, inability to concentrate, and extreme fatigue.  The cramps were excruciating, and I spent hours each day in the bathroom, often in tears.  Every few months, the major abdominal pain would return, but I was done with doctors.  I waited things out in bed at home, and over a period of about four days, the pain would gradually subside.  During these episodes, I usually fasted for at least forty-eight hours, since we felt like my digestive system needed a rest.

Although I had a strong feeling that all my intestinal and emotional symptoms were connected, I didn’t have any idea how to find the root cause.  I didn’t want to treat the symptoms; I wanted to treat the source of the problem.  For a while, I kept an extensive journal where I wrote down every bit of food I ate, my menstrual cycle, each bowel movement, and my emotional state through the day.  I tried taking dairy out of my diet, and avoiding all spicy foods.  I even tried juice fasts for a few days at a time, but that left me extremely weak.  After scrutinizing all the data I had collected, there seemed to be no rhyme or reason to anything.  By this point, I was beginning to wonder if it was all just in my head.

Everything Clicked

Then, in May of 2009, another round of the intense pain began.  Whenever I’m hurting, Kevin always asks me to rate my pain on a scale from one to ten.  It was a pretty constant five, but just touching the right side of my stomach shot it up to a seven or eight.  Forget pressing on it, as that sent me over the edge.  The closest thing I’ve ever experienced was immediately after Hosea’s birth when part of the placenta remained in my uterus.  As a result, I was hemorrhaging, and the slightest touch to my abdomen caused intense pain.  This pain, while not quite as severe, felt very similar.

I was at the end of my rope.  I felt like I just couldn’t take the cycle anymore.  The fatigue and emotions were almost constant, the diarrhea wouldn’t stop, and now the abdominal pain was back.  I told Kevin that I was ready to go to the doctor, even though I didn’t really think they could find the problem.  I just couldn’t keep going like this.  In the meantime, I grabbed my laptop and brought it to the bed, where I started putting my symptoms into various medical websites.  I had done this in the past, but this time I started to notice celiac disease.  I didn’t think too much of it since I certainly wasn’t losing weight or seeming malnourished, but it was hovering in the back of my mind.

That afternoon, Kevin walked into the bedroom and asked me if I had seen the part of an article in the most recent Reader’s Digest about Elisabeth Hasselbeck’s struggle with celiac.  The symptoms she had experienced sounded eerily familiar.  At that point, I decided to dig a little deeper, and things really started to click.

Chronic diarrhea is a symptom of celiac.  Check.  Abdominal cramping: check. Fatigue: check.  Depression: check.  Irritability: check.  Difficulty concentrating: check.  Joint pain: check.  Irregular menstrual cycle: check. Mouth sores: check.  And then there are the related conditions.  Gall bladder disease: not only has my gallbladder been removed, but so have my mother’s and two of my three sisters’.  Rheumatoid Arthritis: my maternal grandmother had it so badly that she had joint replacement surgeries on both of her hands; eventually it attacked her lungs and started the process that led to her death.  Type 1 Diabetes: my maternal grandfather and my mother’s sister both died from it.

Mystery Solved

Now we had a decision to make.  Should I follow the recommended advice and keep eating gluten until I had a medical diagnosis, or should I just stop eating it and see what would happen?  On the one hand, a positive diagnosis would remove all doubt from my own mind, and also give legitimacy to those who might question how real my problem really was.  On the other hand, you generally can’t just go to a doctor and say, “Please test me for celiac.  I don’t want you to consider any other possibilities or run any other test; just look for celiac.”  Who knows how long it might take to get the right tests ordered, and how many other invasive procedure you might have to go through along the way.  Besides, if a “simple” diet change could actually bring relief, why would I knowingly go through another day of pain?

So, we decided to just drop the gluten from my diet and see what would happen.  I went out and bought a Pamela’s Products bread mix, and started watching out for anything containing wheat, barley or rye on labels.  I found lists on celiac.com that explained what shouldn’t be eaten, and began to read other people’s blogs and recipes.  Within less than a week, I had my first normal bowel movement.  That was a great day!  Even better was the next, when I had another normal day.  In fact, I was now realizing that for the past several years, even my “good days” weren’t really normal.

Over the next week, I began to feel alive again.  My depression faded away, and I could finally concentrate.  I was filled with energy instead of feeling constant fatigue, and the aches and pains in my joints started to lessen.  Each day, I was amazed that I still didn’t have diarrhea—it seemed too good to be true!  In some respects, this period was a sort of emotional roller coaster, because how do you say, “Yay!!!  Now I know that I have an incurable auto-immune disorder”?

The next month was filled with experiments in gluten-free breadmaking—with some successes and quite a few failures.  I discovered that I definitely didn’t like bean flours or quinoa, but that brown rice and sorghum flours were quite yummy.  There was an element of sticker-shock as I realized the cost of gluten-free products.  Because of the cost, I was still preparing gluten for the rest of the family, and just doing my best to keep everything separate.

About four weeks into being gluten free, I had a setback.  On Thursday morning, I had made a batch of Challah bread for the upcoming Shabbat, and then a large group of friends came over for dinner—pizza, of course.  Although I didn’t actually eat anything with gluten, I can only imagine how much cross-contamination was taking place.  On Friday night, the diarrhea started again.  It was discouraging, of course, but I simply determined to be more careful.  Over the next few days, things gradually went back to normal, and I assumed that the worst was over…

Were We Wrong?

About two weeks after the first time I “got glutened,” we decided to have pizza from a restaurant around the corner that carries a gluten-free crust.  They had assured us that they took precautions to avoid cross-contamination and we had eaten there twice before with no problem, so I wasn’t concerned.  This time, I had a grilled chicken topping.  Within about twenty-four hours, I was back in the bathroom again, but we weren’t 100% sure what had caused the problem.  After a couple of days, I felt much better, and there were still some leftovers of the pizza in the refrigerator.  I decided to do a little test, and have a piece.  Wrong move!  This time, the cramps were horrible, and the diarrhea went on for several days.  Next came the depression and fatigue, which were almost worse than the intestinal issues.  It took about a week before my body finally calmed down.  Once I was feeling better, I called the restaurant and discovered that the chicken topping most likely contained gluten.

Over the next few weeks, mysterious “glutenings” seemed to keep happening.  I would feel fine for a few days, and then the symptoms would start again.  Each time, the pattern was the same—bad cramps and diarrhea that improved over three to five days, followed by fatigue and emotional symptoms that lasted another two to four days.  The first two times, we were pretty sure what had caused my symptoms, but these other events seemed mysterious.  Was it possible that my initial improvement had just been a coincidence?  Was there something else wrong with me that was causing these problems?  After all, I was only self-diagnosed.

Gradually, we began to realize how many opportunities existed for me to be “glutened.”  We were eating outside the house (in other people’s homes or in a group setting) three nights a week.  Kevin and the kids were still eating bread products for breakfast and lunch, and there was even gluten on the dinner table at times.  It’s awfully hard to feed a five year old and a two year old without getting any gluten on your hands.

After asking for recommendations from the e-mail forum of our local celiac support group, we decided to make the whole house gluten free.  We also decided to eat every meal at home for the next month.  Yet even with these precautions, I was still having episodes.  My emotions were all over the map, and I was once again wondering if it was all in my head.

Then, we began to get a better understanding of cross-contamination.  After happening to come across a website alerting celiacs to the fact that Pace salsas were no longer gluten free (I was eating it almost every day), we finally began to grasp just how careful we would have to be.  I hadn’t really worried about “natural flavors” on a label up to this point, because I didn’t think it could possibly make any real difference.  After examining every item, we began to call manufacturers, and it turns out that a packaged salad we ate quite often also contained gluten.

Finally, things seemed to turn around.  After a couple of good weeks, it was time to celebrate Kevin’s birthday.  He loves my cooking, and his only birthday request was some of his favorite meals.  I read all sorts of labels and checked ingredients online, and I was confident that I could adapt all my recipes to be gluten free.

About thirty-six hours after dinner, the diarrhea started again.  I was completely discouraged, because I was sure I had been so careful.  We must have been mistaken about this gluten thing!  There must be something else wrong with me!  But I decided to check everything one more time.  Each ingredient was looking fine, until I got to the one can of Swanson’s Beef Broth I had used in the large pot of chili.  Although a bulletin board post from several years ago had proclaimed it gluten free, I hadn’t searched far enough.  In 2008, Swanson changed their recipe, and now it has gluten—even though you can’t tell from the label.

No More Gluten!

That can of beef broth was a defining moment for me.  Although I may be self-diagnosed, and doctors may not have looked at pieces of my small intestine under a microscope, I feel totally confident saying, “My immune system cannot tolerate gluten, and the slightest bit of it is enough to cause a severe reaction in my body!  Short of God performing a complete miracle—which I confidently pray for every day—I will never be able to eat gluten again.”

If you were to tell me that you have the exact same symptoms as I had, would I recommend that you take the same path I did?  I’m not sure.  Having an official diagnosis would probably have made me more confident that I was doing the right thing with the diet, even in the midst of continuing symptoms.  However, I had already received “diagnoses” of diverticulitis, appendicitis and irritable bowel syndrome, and  I don’t have any of those.  Would I really have trusted a doctor who said, “You have celiac,” or “You have gluten intolerance”?  And what if the tests had come back negative?  Would I still be living with all my symptoms today, or taking whatever medications the doctors thought might help?

A few weeks ago, I ordered a diagnostic test from Enterolab, and I just received my results.  While their tests aren’t always looked highly upon in the medical community, it gives me a little more insight, especially since they did a gene test (I believe this is the only one of their tests that is widely accepted as legitimate—their other tests are not scientifically disputed, but they also haven’t been peer reviewed).  According to their findings, my body is producing excessive antibodies despite being (mostly) gluten-free for three months prior to the test.  In addition, I “have two copies of a gene that predisposes to gluten sensitivity.”  Their recommendation is that I permanently remove gluten from my diet, so I guess my self-diagnosis has been validated on some level.

In the meantime, as I told my mom what I was going through, she decided to go back to the doctors one more time.  She’s been having my same symptoms and worse for the last twenty years, and no one has been able to offer her any relief.  Right now, she’s in the last stage of getting an official diagnosis, and every celiac test so far has been positive.

I’m sure this journey will continue as I learn more and more about living without gluten.  If you have any questions about being gluten-free, feel free to ask!  I’ve already received so much from others who are blogging or participating in e-mail groups, and I hope that I can give a little back by sharing my experiences as well!

At the beginning of time, the One true God, Maker of Heaven and Earth, created humanity to be in relationship with Him.   And yet, we rejected Him and willingly chose our own destruction—we turned our backs on the One who made us.  Though God reached out to us again and again, even setting apart an entire nation as His ambassadors to bring us back into relationship with Him, we still wanted nothing to do with Him.  The Jewish people (Israel) whom He chose as His special possession—His light to the world—refused His love and His calling as they pursued their own lusts and desires.  He was nothing but good and merciful, and we were nothing but wicked and ungrateful.  Yet, despite our unworthiness, God did not give up on us.   

In the greatest act of compassion, God sent His Son, Yeshua, to pick up the task Israel had been unable to accomplish.  He became one of us—a normal, Jewish man—yet never once did He sin, never once did He do any wrong… never once did He reject the will of the Father to satisfy His own wants and desires.  With every moment of His life, He showed us how to live in relationship with God.  Yet this was not enough.  We were separated from God by our sins, and without something to wipe them away, we could never be close to God.

And then, Yeshua made the ultimate sacrifice—He allowed Himself to be brutally cut down, shedding His own blood in payment for our sins.  Though He alone did not deserve death, He laid down His life and took the punishment we deserved…

But death had no power over Yeshua, and He was raised to life again!  Now, through His sacrifice, our Jewish people—and indeed, the whole world—can finally be restored to relationship with our Creator.  But not only that, Israel can finally be the nation He made us to be—a kingdom of priests for the rest of humanity!  How can we do anything less than give our all to the One who loves us so much?  How can we not live every day trying to be more like Him?  How can we refuse to be His messengers, proclaiming salvation to all the earth?