Let’s Talk Celiac

I’m grateful for the things I’m learning about the big effects of gluten cross contamination for Celiacs, and that I have been advised to make my entire home completely gluten free…

The staff of life: food made from dough of flour or meal and usually raised with yeast or baking powder and then baked. (Definition from vocabulary.com dictionary)  Bread… Wheat… Grains… For most people, these foods are essential to a balanced and sustaining diet…

But not for those with Celiac disease.

Most people these days have heard of Celiac disease.  It’s becoming more and more common for doctors to look for it and diagnose people who have it.  When I was diagnosed with Celiac disease almost 15 years ago, I, along with a lot of other people, at least in the US, had never heard of it.  I had been going to many different doctors for 7 years, in search for an answer as to why my stomach gave me so many problems and why I always felt as though I had a mild flu.  For many years I was sent for various gastrointestinal tests, many of which were very unpleasant.  I had every test done on my gallbladder, repeatedly over the years, small bowel follow-throughs, scopes, X-rays, CT scans, ultrasounds, and too many tests that included drinking very nasty stuff.  With each test, I would have the hope that this was the one that would give me the answers I needed and set me on a course to take care of the problem.  After playing the waiting game time and time again between tests, just to have the results come back as “normal”, I began to feel defeated and that my reality really was as one of the first doctors had told me: IBS, and I would just have to figure out what I could and couldn’t eat and learn to live with it.

And so I would go on, trying to “pretend” like nothing was wrong.  But that was very hard to do when things kept getting worse and my body was screaming at me for help.  Then one night, when my oldest child was about 3 1/2 and the youngest around 1 1/2, I had one of my “attacks.”  There had been several of these in the past, but I hadn’t had one for a long time.  These attacks consisted of extreme pain high in my upper abdomen, just below my rib cage and above the belly button.  For years I had felt consistent pain in that spot, like a knife was poking in there and twisting.  That pain was always there, worsening after I ate.  But it was tolerable, and none of the tests ever showed that anything was wrong, except for some mild reflux issues.  Over the years, in two of the scopes I had, it was confirmed that I had Barrett’s Esophogus, a reflux disease, but then two other scopes showed that I didn’t have it.  I was on reflux medication off and on over the years, but was still having the sharp knife-like pain.  Even though that pain was always there, when I had an “attack”, it was very severe, to the point where I couldn’t handle the pain.  When this happened, I usually thought that I was having an appendicitis attack, so I ended up in the ER.

On this particular night, we had a new doctor in town that I hadn’t been to before. He ordered some blood work and a CT scan, and after a thourough examination and receiving the test results, it was determined that nothing serious was happening at the moment and I was sent home.  However, this doctor wanted me to follow up with him in his office the next week so that he could investigate this further.  I ended up in his office quite often over the next year.  He would have blood work done, and send me for various tests or to various specialists.  After following this process for about a year, one day I was sitting in his office as he was looking through my mile-high folder (this was before they converted to having everything electronically based.) My doctor carefully looked over each page, flipping through the entire file and asking more questions.  He kept saying, “what are we missing?”  Then suddenly, as if the thought was just placed into his head (I attribute this to God saying it was time for this answer to come), he looked up at me and said, “Have we tested you for Celiac Sprue?”  I looked at him as though he were speaking a foreign language, as I had never heard that term before.  I told him I didn’t think so, and he immediately sent me to have a blood test for it.  My numbers for the Celiac marker came back elevated, and I was referred to a gastroenterologist for another scope, only this one being specific to biopsy a certain area in the small intestine to look for damage to the villi that would confirm Celiac.  After the initial appointment with the gastroenterologist, where he scheduled the scope to be done in a couple of days, my husband and I went to eat at Chili’s, our favorite restaurant at the time.  We went there with the thought in mind that it may be my last time eating there if I did end up having Celiac.  As I mentioned before, at that time Celiac disease was not well-known, and gluten free menus in restaurants were unheard of.

The day I got the result from the biopsy that confirmed I had Celiac disease, my husband and I celebrated.  It seems funny to say that we were celebrating such a diagnosis, but we were just so happy that we finally had an answer, and that there was something I could do about it.  Going on the gluten free diet wasn’t easy, especially at that time when so little was known about it.  There were very few gluten free foods available, and most of what was out there was quite nasty.  I’m sure I ended up throwing away hundreds of dollars in foods that I would try but just couldn’t choke down.  The internet wasn’t very helpful for Celiac at that time either, as there just wasn’t much information about it.  And some of the information was incorrect.  Like with oats.  At that time it was thought that Celiacs couldn’t have any oats because it was believed that they had a protein in them similar to that of gluten.  It wasn’t until later that it was discovered the problem with oats for Celiacs wasn’t the oats themselves, but whether or not they had been cross-contaminated by wheat, barley or rye in the growing process.  And there were no laws about the labeling of gluten free products, so nothing was labeled gluten free and you had to learn how to read labels very well and know what ingredients contained gluten, such as malt being a derivative of barley.

And so the task was great, and a lot of adjustments had to be made.  But I was ready to get feeling better, so I persevered through the challenge.  After about 6 months of being on the gluten free diet, I finally started to notice some improvements and felt that I finally had all the answers I needed t move forward to healing.  A couple of years later I had another scope and biopsy to check on the damage of the villi.  It had healed, and things were looking pretty good.  I still had some health challenges, but I was hopeful with this new diagnosis and treatment plan of a gluten free diet.

The diagnosis of Celiac for me was nearly 15 years ago.  For a while, being gluten free seemed to be helping with a lot of my symptoms.  But some problems just didn’t go away.  And over time, things kept getting worse and worse.  I was so careful with the gluten; I never cheated even with a little pinch because I had felt bad for so long that I didn’t want to keep going down that road.  I’ve accidentally eaten gluten three times over these years, and let me tell you, I don’t want that to ever happen again! I get deathly ill, with severe pains and throwing up/diarrhea at the same time for almost an hour straight.  Then when it finally calms down enough for me to curl up into a ball, I go back and forth to the bathroom for the next several hours with the pain only lightened a little bit.  After that I spend the next 12-24 hours or so lying in bed, not daring to eat or move and stir things up again.  Then the next three or four days I am completely wiped out and feel as if I have the flu.  So it’s pretty obvious why I don’t cheat, not even a little!

Fifteen years of eating gluten free; and yet, I continue to have problems.  For a long time I would pass these issues off as being related to the Celiac.  Then after a while I would return for more tests to make sure I wasn’t missing something else.  Again, the tests would all come back as normal.  I had scopes with biopsies done every 2-3 years to check for damage to the villi in the small intestine, which confirms a Celiac diagnosis.  Throughout the years the biopsies would come back showing no damage, and so I felt that I was doing a pretty good job of keeping the Celiac under control with the gluten free diet. Then a year ago, the biopsy I had showed damage again.  If I never eat gluten, how could this be?  Two possibilities came up: 1- SIBO (Small Intestinal Bacterial Overgrowth), 2- Cross contamination of gluten.  Since then we have also found that I am fighting multiple chronic infections in my body.  I am currently participating in a program to diagnose further and treat the SIBO that I likely have, as well as doing treatments to heal my gut and strengthen my immune system.  As part of this program (which I am extremely impressed with and would recommend to anyone with a lot of GI and other issues: http://drjasonklop.com), a couple of doctors and a nutritionist have suggested that due to the severity of my body’s reaction when gluten accidentally gets consumed, as well as the damage in the recent biopsy, and a rash on my legs that has developed in recent months, that I may be extremely sensitive to gluten to the extent that even touching it and breathing it in could likely be causing a lot of my symptoms.  Because of this, it has been recommended that we do a trial run of having a completely gluten free home.  That means getting all gluten out of the house, cleaning the kitchen cupboards, pans, utensils, etc. thoroughly, and re-stocking the home with all gluten free foods for my entire family of eight.  Yes, this is quite overwhelming, and not an easy task.  But I have a wonderful husband and children to help me through the process and work through these changes.  As we are starting this process, I feel very good about it and know that it will have many long-term benefits.  One of our daughters also has Celiac, so this will be a great benefit for her as well, along with my entire family for other reasons.

Why did I have the desire to share this long post about my Celiac journey?  I think most importantly is that I want other Celiacs to think about your own situation and evaluate your symptoms and environment.  I thought I was being so careful, and that the tiny bits of gluten around me didn’t really matter.  I know a lot of people who have Celiac and have been on gluten free diets long-term and are still having problems.  Could cross contamination be one of the big underlying issues?  Let’s become more aware and evaluate what things can be done to make improvements in our environment, thus making improvements in our health and overall well-being.

Stay tuned for future posts on my experience of getting gluten out of the house and the benefits I find from it!

Photo by Johnny McClung on Unsplash