How I Decided I Needed to Be Gluten-Free

It always seemed like I was a healthy kid. My mom took my sister and me to the doctor every year, and we always got clean bills of health. I never remember being sick from an undetermined cause. As a teenager, I had terrible acne, and this persisted throughout my college years. About the time of my senior year in college, I decided to go to a dermatologist to see if he could help me manage my acne and clear my skin. I was given a suite of topical creams to try, and I was put on an antibiotic. I was on the same antibiotic, Bactrim DS, for around a decade. At one point, my dermatologist tried putting me on another antibiotic, but my acne roared back with a vengeance. I came very close to going on Accutane, but I started doing things to get my acne under control without it, like washing my face before using the topical creams and changing my pillowcases every other day (sleep on one side one night and the other side the next night). I was eventually put back on the Bactrim. Several years later, I decided to try stopping the antibiotic. I think the nail in the coffin for me was when elevated liver enzymes showed up in my blood work during one of my yearly physicals. It scared me that the antibiotic could be doing something to my liver. I told my dermatologist and stopped the antibiotic. I tried to stick with the other things I’d been doing to manage my acne. It wasn’t terrible, but I still continued to break out. There was a time when it did get worse, enough for my parents to say something to me about it. My dad said his had gone away after he had gotten out of college. Mom mentioned that she knew someone whose skin had cleared by taking B-vitamin supplements. Since I was on a multivitamin (One-A-Day for women), I thought there was no way I could be deficient. I did decide to try exploring the multivitamin and supplement angle to see what I could do. I found out that Nature Made’s multivitamins were far and away much better than the One-A-Day and stuck with those. I eventually added in other supplements that the multivitamin wasn’t providing at all or in sufficient amounts to get to 100% of the RDA. It did seem like these helped somewhat, but the acne still returned. I also cut back drastically on soy. I was drinking a protein shake during the week that had soy protein in it and had been eating other things with soy ingredients. This may have also helped, but it didn’t help completely. I decided to try doing some more reading up on acne and found out that gluten sensitivity/allergy might be a cause. I thought about trying to eliminate gluten and dairy to see if either would make a difference. I figured since I was running low on bread that I could start with gluten and see what would happen. I went to the grocery store and bought gluten-free items to replace my usual gluten fare, like bread, crackers, English muffins, etc. September 11, 2012 was my first day going without gluten. The first day seemed non-eventful, but that night, I woke up, and my stomach felt a lot less bloated. I couldn’t believe it. The next few days, I could tell a huge improvement in how I felt. The constipation I’d been experiencing for years was clearing up, and I was full of energy. However, I did try “testing” things during those first couple of weeks. I tried half a breadstick at my mom’s house one evening and continued eating questionable food items, like foods containing oats. The last time I knowingly ate gluten, I had a biscuit from Bojangles. I only slept two hours that night and spent the next few days feeling very jittery. I didn’t really sleep well until sickness forced me to stay home and rest, and the sickness made me tired enough to sleep. Several years before this, some blood tests had shown that my thyroid was underactive. I ended up taking 50 mcg of thyroid replacement hormone daily and had been doing fine on it for years. When I researched thyroid issues, I also found out they could be connected to issues with gluten. I realized that an attack on my thyroid may have caused the insomnia and the jittery feelings. It was then that I decided I needed to go completely gluten-free.

Celiac Disease?

I got tested for celiac disease about a week and a half after I started switching to gluten-free foods, but the test results were negative. An endoscopy a few months later came back negative as well except for mild inflammation. My current gastroenterologist believes my blood test results may be falsely negative due to the IgA deficiency that they showed and that IgA deficiency is a huge risk factor for celiac disease. I’m not sure if the inflammation found in the endoscopy may be indicative of early-stage celiac disease, food allergy, or something else. The doctor may very well have not taken samples from areas with villous atrophy. While I was eating gluten-free foods at the time of the endoscopy, I was still getting plenty of exposure from gluten cross-contamination, so I have a hard time believing that any damage present would have healed during that time. I had my biopsy samples reviewed a second time, and the same conclusion was reached, no celiac disease. I had the gene test done, and it came back showing that I have one copy of the DQ8 gene. I tried to look into other methods of testing for celiac disease, like the in-vitro gliadin challenge, but nothing ever came of my efforts. Eventually, I came to accept that I may not ever get tested in a way that would show conclusively that I do or do not have the disease. I do know that I have to live as if I did have celiac disease because my extreme gluten sensitivity has forced me in that direction.

Struggling to Get and Stay Better

During the first several months of my gluten-free life, I thought I was getting better. I was eating gluten-free foods but didn’t realize until later that I wasn’t properly handling gluten cross-contamination. My symptoms came back with a vengeance. I was tired all the time and dealing with episodes of vertigo. My acne was horrible, especially along my jawline, and it was enough to make me feel sick when I looked in the mirror. I didn’t want to leave the house. My GI issues were going in the opposite direction of what they were before I decided to try the gluten-free diet. I finally realized it was from all the trace gluten I was getting through cross-contamination, through the gluten-free food items I would order out at restaurants without asking for any special treatment among many other things. I ended up doing a lot of things to de-glutenize my life, including running all the dishes through the dishwasher, doing major cleaning in my kitchen, replacing the kitchen items I thought would need it, replacing gluten-free food items that I thought might have been contaminated at some point, bathing my cat and switching her food to gluten-free, etc. It took weeks, if not months, to work through all the things I could think of at that time and take care of them. I stopped eating out and didn’t try eating out again until about two years later, and even then it was to eat at an all gluten-free restaurant. I started preparing and taking my own food everywhere. Over time, I’ve become more and more sensitive to trace gluten. I’ve had to uncover other sources of gluten contamination and deal with those, discovering sensitivities and reactions to smaller and smaller amounts. Touching something like a package from the grocery store that might have trace gluten on it from someone’s, or even my, hands and then touching food without washing my hands is enough to trigger symptoms. Even three years into the gluten-free life I was still uncovering ways that I was exposing myself to trace gluten. While I have good days, there are still bad days, where I’m dealing with symptoms from a gluten episode or other causes. At one point, I believe a cold caused me to develop vestibular neuritis. This was a self-diagnosis since I didn’t feel I had symptoms serious enough to warrant a doctor’s visit. I had vertigo episodes from that, and I get vertigo from gluten exposures. I had to be extremely careful and observant so I could make sure that I wouldn’t miss a possible exposure because the symptoms of the vestibular neuritis were masking it. I’ve also had to uncover other food reactions, like reactions to guar gum and vinegar. I certainly didn’t have all these ups and downs before I went gluten-free, which definitely makes living this life very discouraging and frustrating. I’m still waiting for the day where I’m doing and feeling well on a much more regular and consistent basis.

Regrets

A part of me will always wonder if the antibiotics I was taking for my acne caused me to develop my reactions to gluten. I will always regret going to a dermatologist for my acne when I could have done things on my own to make things better. The things I had learned about seemed so simple, like changing out towels, pillowcases, etc. often, washing my face with a gentle cleanser and after using the topicals, using a moisturizer, etc. I wish I had thought about trying those things on my own before going to a dermatologist. What’s funny is that I don’t ever remember the dermatologist mentioning doing things like this. Immediately, I was put on antibiotics and strong topical creams that may not have even been needed. I will always wonder what might have been, if my life might be different today if I had never gone to the dermatologist for my acne.

Epilogue

My story isn’t finished, as I’m sure there will still be more things to deal with. There could still be trace gluten exposures, other food reactions, and possibly other things still causing issues. This feels like a never-ending war, where a victory is more often than not followed by a defeat. The main reason I tried gluten-free in the first place, my skin, still has not cleared. One thing I had hoped would happen would be to go down on my thyroid medication dosage or be able to stop it altogether, but it hasn’t happened. I am determined to stay the course living the gluten-free life so that I can maintain my health and keep myself from developing worse problems later in life. I have to believe that suffering through all the pitfalls, setbacks, and inconveniences of the gluten-free life are worth it in order to safeguard my health and take care of my body. I have family, friends, co-workers, and others who are counting on me, and I have to stay well for their sakes as well as for my own. I only have one life and one body that God has graciously given to me, and I want to do my best to treat my health and my body the way He would want me to do.


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2 Thoughts on “My Story

  1. I just found your blog by way of a comment you left at Gluten Dude’s blog about your vitamin regime. Your story sounds as complex as mine. I don’t have an official diagnosis for celiac disease either, but I’m positive that’s what I have. I, too, suffer with vertigo attacks. Not fun. And I’m extremely sensitive to gluten residue as well, so I can completely relate to your story, frustrations, and ongoing issues. This is definitely a difficult challenge.

    • retrogirl77 on January 26, 2016 at 5:53 pm said:

      Thanks so much for reading and commenting. So much about this life is confusing and doesn’t make sense. I agree that it’s VERY difficult. I actually have an appointment with my allergist to be evaluated for wheat allergy. I recently discovered that taking an antihistamine greatly improves my symptoms. I was skin-tested a few years ago but did not have the blood test. I plan to ask for the blood test. The skin test didn’t show anything. I had a blood test for gluten allergy as well, but I understand that’s pretty rare. It didn’t show anything. I’ve never had tests for guar gum (or bean) or vinegar either and am thinking of asking for those as well. Hope we all find the answers we seek!

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