My Celiac Story

For as long as I can remember, my intestines just didn’t seem to work right.  As a teenager, whenever I ate at certain pizza chains, I would spend the next day or two with cramps and diarrhea.  I just assumed that the sauce was irritating my stomach, and didn’t give it much thought.  When I was eighteen and in my first year of college, I met Kevin, and we had a short courtship before we were married.  During those few months, I remember walking along the river-walk (which was one of our favorite places to go) and having to run into the lobby of a hotel to use the restroom because I couldn’t even make it to the next public restroom.  Still, my symptoms came sporadically, and I didn’t think much of it.

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.  radioactiveThe 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 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!

One Response to “My Celiac Story”

  1. Hi. I just happened on your great website, looking for a substitute for white flour. My husband has had similar symptoms for years but there are periods when everything is fine so we’ve never really explored the gluten-free route for long. Now I’m determined to follow the rules to a T. How long before we may see some difference? Do you think symptoms come and go? He’s had every test known to medical science (except one for gluten intolerance) and I’m pretty sure the drs. think it’s all in his mind. You can imagine how discouraged he is. Thanks for any thoughts you can send. Jane

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