My first day gluten-free was on September 11, 2012. I recall the actual day itself being pretty uneventful. That night and the days following, I began to notice such a huge difference in how I felt that I knew gluten, or wheat at least, was a problem for me. Over the years, I’ve had to deal with so many ups, downs, and issues trying to get my health where it needs to be.
2012
Even before I went gluten-free that year, I was having problems. A blood test at my yearly physical revealed extremely high levels of eosinophils, which I found were due to an adverse reaction to flaxseed. In the months that followed, I dealt with chronic insomnia. I’m still not entirely sure what actually caused it, but moving electronics away from the bed seemed to help, as well as getting back on my supplement regimen, which I’d stopped due to the doctor’s instruction to determine the source of the elevated eosinophils. I also had to get the right omega supplement. I was previously using one with flax oil, but I had to find an alternative and found one made my Arctic Naturals, a Walgreens brand which I believe no longer exists. I could not use fish oil by itself; I needed something with a mix of omegas in it. After finally getting on track with my sleep, I decided again to investigate my acne, which I’d been doing since the summer of the previous year and was why I started a new supplement regimen, and found some sites that suggested a link between gluten and acne. They had mentioned dairy as well. My plan was to cut gluten first and then dairy. I cut gluten starting on September 11. There were times in the beginning I ate gluten-containing foods, but one night, I was extremely jittery and only slept for a couple of hours. I wondered if it might have been a thyroid issue and tried cutting back on my medication. When that didn’t work, I wondered if it might have been an autoimmune attack due to Hashimoto’s, with which I’ve never been formally diagnosed. I decided to stay the course with the gluten-free diet. Since my celiac blood test came back negative, I didn’t worry much about cross-contamination and just stuck to making food swaps. I had a rocky start, but I felt like over time I was figuring things out and doing pretty well. Making the food swaps was actually pretty easy. Later in the year, I started developing symptoms, and my first idea was to check to see if the coconut milk and protein powder mixture I’d started using might be causing problems. I felt better after stopping it but continued eating some baked goods that had the coconut milk in them because I didn’t want them to go to waste. I didn’t seem to notice symptoms from those.
2013
I finally saw a gastroenterologist to try to figure out what exactly might be going on with my issues with gluten. She didn’t seem to think it was too late to try an endoscopy, so she scheduled one. The biopsy samples showed negative for celiac. The only thing of note was inflammation found in the tissue samples throughout my digestive system, with the stomach seeming worse than the others from what was noted. Around the time of the endoscopy, I had some symptoms that I wondered might be from the hummus I had tried for the first time the previous day. I checked ingredients in it against what was in the coconut milk and protein powder I quit using the previous year. Guar gum was the ingredient common between them. I decided to eliminate guar gum from foods that were not cooked since the coconut milk in the baked goods seemed fine. Not long after the endoscopy and the guar gum discovery, my acne and other symptoms came back with a vengeance. I finally realized it was due to gluten cross-contamination and began dealing with the sources, first by no longer eating out. Over time, I realized I had to do a thorough cleaning of my kitchen, dishes, and utensils, and I undertook this cleaning multiple times due to mistakes I kept making. I had to stop eating a lot of the things my mom would fix because she just didn’t have an idea of how far she needed to go to keep me from having a reaction. Even I wasn’t sure at this point. Throughout the rest of that year, I was mainly trying to figure out how I was reacting to trace amounts of gluten and how to take care of the sources I found.
2014
I still continued to deal with cross-contamination. I also tried to explain to my mom what I was finding out so that she could try to make safe food for me. Over time, my mom learned really well and started getting really good at making things I could eat and keeping them safe. I began to notice increasing symptoms, though, and one Saturday, I felt particularly awful. I had eaten several foods that day with vinegar as a common ingredient. Could that now be causing a reaction? I felt a little bit better the next day, but Monday, I’d had some Wholly Guacamole with my breakfast and began feeling worse again. The guacamole had vinegar in it. I decided to do a trial elimination of vinegar and began feeling a lot better. I decided to eliminate vinegar completely. I made alternatives, like mayonnaise, ketchup, pickles, and mustard, where I could, but I just did without the rest. I used oil and seasoning mixes to dress my salads. Later that year, I began having strange symptoms, and to test out a possible issue with my thyroid medication, I reduced the dose. I felt better initially but then had symptoms returning. I decided to stop my medication altogether and if I went long enough without it to be retested, I would plan to see my doctor to have a thyroid panel done to determine whether or not I needed to be on medication. My TSH ended up being elevated, so she put me on a 25 mcg/day dose.
2015
I visited my allergist to inquire about allergy testing for vinegar. She didn’t seem to think I was having allergic reactions, so she didn’t think testing would be necessary. During the week of that appointment, I was having worsening symptoms. I’d been eating some cookies that had guar gum as an ingredient. I also felt like something we as a family had made with some Pillsbury gluten-free dough made me feel terrible, and it also had guar gum as an ingredient. I decided to cut out guar gum altogether and began looking for alternatives to the products I still used with the ingredient. During this time as well, I was struggling to find a probiotic that I could use safely. The doctor I was seeing had suggested I try one to relieve some symptoms I was experiencing, although it’s possible in hindsight it could have been continued gluten contamination or even the guar gum. Restora made me feel sick. I never noticed a huge difference with Walgreens, so I tried a few others. The CVS version of Culturelle caused me to have gluten reaction symptoms. I stopped probiotics for a while. I also ended up going back up to my 50 mcg/day dose of thyroid medication when low-thyroid symptoms were becoming more noticeable. I felt much better. It turned out that my issues the previous year were most likely due to shredded cheese that had been contaminated. When I refilled my thyroid medication through a mail-order pharmacy, they refilled it with Synthroid. I’d been using levothyroxine to this point with no issues. I’d heard that Synthroid was not guaranteed to be gluten-free, so I decided to contact the manufacturer. The person who spoke to me said the medication was gluten-free, so I decided to start taking it. Over time, I noticed new acne breakouts appearing as well as some GI symptoms. I decided to start up my search for a probiotic again and ended up struggling to find one that didn’t cause symptoms. I finally ended up finding one. However, I realized the source of my symptoms was the Synthroid. I went back to the levothyroxine I’d been using and felt better. During this time, I decided to replace all my bathroom faucets with ones that had lever handles so I would not have to touch them with my hands to turn them off after washing my hands. Later that fall, I began to notice more issues with meals at work, so I bought a mini fridge for the countertop to keep my food cold overnight and began washing out my lunch cooler thoroughly with soap and water before packing food into it. I also began putting my utensils in zipper bags and putting my freezer packs in zipper bags as well. I stopped using the keyboard and mouse with my eating hand when I realized that I was not removing residue from them with the wipes. Doing these things seemed to help. At the end of the year, I ended up getting pretty sick from what I believe was a string of exposures leading up to that point in time. Knowing how much more sensitive I’d become throughout this time and how quickly symptoms seem to appear, I began to question more and more that I might have a food allergy. I also thought back to the inflammation that was found on my biopsy samples from the endoscopy and wondered if they might actually be due to food allergy. Research I had done later showing that the stomach responds to histamine by releasing acid seemed to indicate that the gastritis found on the biopsy could have been caused by food allergy.
2016
I went to my gastroenterologist at the beginning of the year and asked her about the possibility I may be having an allergic response, although I wasn’t sure of the mechanism. My symptoms didn’t seem to correlate closely with IgE allergy symptoms, but my symptoms seemed to manifest very quickly and in response to tiny traces. She suggested I try taking Zyrtec and Zantac daily. I actually decided to try taking Zyrtec when I felt like I was having a reaction instead of just taking it all the time. I avoided Zantac in the beginning since it was an antacid. The first time I tried Zyrtec, I could tell a difference. On multiple occasions, I could tell that both Zyrtec and Benadryl were helping with my symptoms. I decided to visit an allergist to be tested for wheat allergy. I was skin-tested for wheat allergy about four years previous to this time, and it came back negative. I’d never had the blood test. The blood test came back as a very low positive, which the allergist dismissed as a false positive. I decided to see another allergist. The results came back the same, but he seemed to take me a little more seriously. He gave me a prescription for epi-pens upon my request. I’ve not had to use them but was glad I had them just in case. Benadryl seemed to resolve symptoms just fine, and when I finally added on Zantac after realizing it was a histamine blocker as well, it seemed to help as well. I also found that Allegra and Pepcid were helpful, so I started keeping these on hand. Questioning my low positive allergy test results led me to research food-pollen cross-reactions, and I now believe that my allergy may be a primary grass pollen allergy that causes me to react to foods like wheat, because wheat is a grass. I tested highly positive for grass pollen allergy. My allergist seems to be on board with this diagnosis as well. During the summer, I decided to try a food product with vinegar in it. My allergist had previously ordered a blood test for wine vinegar allergy that came back negative. I’d also recalled other times I’d eaten products with vinegar that didn’t seem to cause an immediate reaction. Since I knew that distilled vinegar could be made using a gluten source, I wondered if that could be the cause of my reactions to vinegar. I tried a food product with specific vinegars in it, not distilled, and didn’t have a reaction. I began using food products with vinegar in them again and would only use food products with distilled vinegar if I knew the source was a non-gluten one. At the end of July, my department at work ended up moving to another building. I started having a bunch of issues there. The desk had a rough surface, so I couldn’t wipe it clean. I noticed problems with a soap dispenser where I believe someone mishandled the pump when he/she refilled it. I also believe my lunch cooler was starting to cause problems again. I decided to use paper towels on the desk and put my food on those. I brought in my own soap dispenser, labelled it, and refilled it myself. I tried some machine-washable lunch totes for bringing my meals, but when those didn’t work, I decided to start bringing all my food in containers and putting them in grocery bags with pre-packaged utensil sets. Some items I brought in their original packaging and just washed the packages when I was ready to eat them. I’m still carrying my meals to work in this way, and it has worked out really well. Exposures have gone way down since making these changes. Even though I felt like I’d fixed at least most of my exposure issues, I noticed other problems emerging. I started noticing more trouble keeping up my iron. After my iron showed up earlier in the year as being low, I decided to try doubling up my supplement regimen since adding on extra iron wasn’t helping. At this point in time, my doubled-up regimen stopped helping. I decided to try adding on extra iron, about the same amount as before, to see if it would help. I was thinking the balance would be better since I was now taking twice the amount of everything else. It seemed to help for a while, but other issues started cropping up. I finally began questioning my multivitamin and decided to try another brand to see if it would help. I settled on Centrum Adults, and I could tell a difference with it. I was concerned about the low amount of copper in the multivitamin, and while researching copper, I discovered a condition called copper toxicity. I began to wonder if I was dealing with that condition as I thought back over some strange symptoms I began noticing after starting the Centrum.
2017
Early in January, I realized that the Centrum was finally making me copper-deficient. I was using the multivitamin twice a day like my old one, but once it was finished eliminating the excess copper from my body and started making me deficient, I decided to go back to my old multivitamin and stick to my previous regimen while balancing copper and zinc in my diet. It was tough at first, but I finally got the hang of things by researching foods using nutrition apps and websites. I got a feel for what combinations worked and what combinations didn’t. Things seemed to be going smoothly until I started developing other symptoms. I started becoming really tired, and my acne began flaring up. The only suspects that I could determine were my supplements and my thyroid medication. I stopped my thyroid medication and felt better, but I began cutting back on my supplement regimen when symptoms returned. Over time, I determined that I do fine with a 400 IU vitamin D supplement, an omega supplement, and a probiotic. I had to adjust my vitamin E and iron intake and keep those in balance. There were other wheat/gluten exposure issues that needed to be handled, such as the water cooler at work. I realized I needed to go back to my usual 50 mcg dose of levothyroxine, and the reason it seemed to make me feel worse months ago will most likely remain a mystery. Keeping my wifi turned off at night also helped me to feel better and to sleep better as well. I’d discovered in the past that having wifi on during the night affected my sleep, but I thought fixing other problems corrected the issue when I found that leaving it on for a night didn’t affect me. However, after leaving it on for three months straight, I began noticing insomnia gradually setting in more and more. Since the modem didn’t have a wifi cut-off button on it, I set it to bridge mode and plugged a wifi router with a wifi cut-off button into it. Things have been better since I’ve started cutting it off at night again. My acne is also finally clearing. I believe I’m finally getting closer to where I need to be and the questions that have plagued me for so long about my lack of a celiac diagnosis may finally have an answer. It could be that my nutrition and “absorption” issues were caused by dietary imbalances rather than by intestinal damage. I may finally have a good picture of the root causes of issues that have plagued me for the last five years, food-pollen cross-reactivity and nutrition imbalances.
The last five years have indeed been rocky and rough, but I believe I’ve come through them stronger and in better health than I was before. I’m hoping that over time things will continue to get better and that I’ll continue to get a good handle on what my body is telling me and what I need to do to make things right when things go wrong. Also, by including this information on my blog, I hope that my experiences will help others find the causes of their health issues and help them get their health back on track.
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