I am Fiona Childs, founder of Gluten Intolerance Information and Food Intolerance Information…. and jeesh! I used to be a mess. (A total and complete freaking mess.) I had appeared to be healthy most of my life and on the outside I actually looked pretty healthy. Even through adulthood I gave a great impression of being healthy, but always, underneath it all I had felt terrible. As many people do, I take pride in my health, and it can be hard to admit (even to ourselves) when we are feeling badly. I was chronically tired, plagued with skin issues and felt my brain was lost in a fog 24/7!
When I developed the worst acne ever at age 31 I was devastated. With three little ones, I thought that feeling tired and foggy was expected, but to have eruptions all over my face was really getting me down. After dozens of dozens of dermatologist visits and the suggestion of Accutane by one of them, I went to a naturopath who had me tested for food intolerances and allergies. Those results showed that I had a number of food intolerances including one that is often a culrpit in skin conditions, dairy! So I took the dairy out of my diet, together with eggs, spinach, nuts, pumpkin and a few other items. Gluten, however, did not appear to be one of my intolerances and so I continued to consume gluten.
Sure enough, over time my acne started to diminish. I was happy. I thought it was pretty darn cool that removing dairy from my diet helped to get rid of my acne and it actually inspired me to started this site in 2009 writing about food and food intolerance. Despite this however, I remained still exhausted, still with brain fog and a host of other new symptoms were starting to present themselves. During these years though, as I mentioned above, I was pretty much in denial that I was experiencing anything but optimal health. As the days and months and yes, years, went by, I found myself feeling more and more drained of energy. I justified this by telling myself that any woman working full-time who had three children in three years would (and should) feel tired. And so I disregarded the utter exhaustion I constantly felt and carried on.
I later noticed that I was cold all the time; thoroughly chilled “to the bone,” even in summertime. My hairdresser pointed out to me that my hair seemed to be falling out in an unusually high amount. My skin was so dry that it was literally cracking when winter rolled around. (But…I didn’t have acne anymore though – so I actually felt somewhat happy to have dry skin and disregarded it more than I should have.) Migraines were increasingly becoming common to me and I was having one about every 10 days lasting for at least 2-3 days at a time. My vitamin levels were getting lower and lower with iron so low that I became anemic.
I had also developed an unusual rash on my leg that was unbearably itchy. Oftentimes I would scratch it uncontrollably – so much so that my leg would bleed and even after it was bleeding, I would still feel an amazing urge to scratch it more! I would do this unknowingly in my sleep sometimes. I could not stop the itching and scratching. My doctor deemed it eczema and gave me powerful steroid creams, none of which really helped. Four years later, I was not only gouging my leg in my sleep, but the itching has spread to my elbows, thighs, scalp and back. I was embarrassed of it and felt this odd shame that I was somehow hurting myself by scratching so much as well as over the fact that I could not control myself from scratching, scratching, scratching!
Then one September, I developed a cough. By Halloween when it was time to take the kids trick-or-treating, I was still coughing. At Thanksgiving-time, I still had the cough and felt miserably ill. I failed the pulmonary test at the doctor’s office. Several rounds of antibiotics were not helping. I simply was not getting better. At Christmastime indeed I was still coughing and failed yet another pulmonary exam. Further, blood work showed my liver enzymes to be concernedly high. Truly by this point, I was admitting to feeling pretty sick – in fact I would describe it as feeling like I was on death’s doorstep. I can remember crying to my doctor “I’m dying. I’m not crazy but something is very very very wrong.” I did feel crazy saying those things, but it was the TRUTH and I felt I had to show my desperation to him in order for him to figure it out! Months were passing by with new symptoms popping up all the time and old symptoms getting worse – something was terribly wrong. Blood work at this time revealed that my thyroid was not working (8 months earlier, the test was normal), nor was my liver, I was severely anemic and seriously deficient in many other vitamins.
I started Synthroid, and eventually Cytomel, and felt considerably better. In fact, just feeling a little bit better gave me a sense of euphoria because I had felt so terribly bad for so very long. And then things plateaued. Indeed many symptoms had improved, such as I could get out of bed in the morning and drive the kids to school. But that was only to come home and feel I could hardly move the rest of the day. Going to the grocery store was a major deal to me because I felt so drained. I was still in a total fog, utterly exhausted and despite being on massive vitamin and iron doses, my blood counts were only marginally improving. Oh, and the rash – I still had the ^%&$*ing rash. Scratching my legs, elbows, head and back multiple times a day had become so very normal to me. It was also normal to bruise from all the scratching, in addition to breaking skin. Something still was very much not right. I visited my doctor again. He said that since the creams were still not working on the rash, we should consider an oral steroid.
I left his office thinking that was crazy! How can this be? Am I to live like this the rest of my life? Will I ever be able to function without fatigue? Will I ever wake up in the morning and feel refreshed? Will my hair ever thicken back to what it used to be or will I go bald at some point? Will my skin always crack from being so dry? What is wrong with me?!
The rash was really what was driving me most crazy and since I did not care to start an oral steroid, I began researching (so thankful for the Internet) and came across what is called “Dermatitis Herpetiformis,” a condition related to Celiac Disease. I looked at pictures, read about it and was convinced this is what was taking over my body. I went straight to the dermatologist where a skin scrape indicated dermatitis herpetiformis. Indeed this is what had been tormenting me all this time – Celiac Disease. The cure – a gluten free diet…. for LIFE!
Upon starting a gluten free diet, the itching sensation quickly dissipated and several months later, the rash was completely gone. Energy started to go up. Everything started to go up, including my blood counts, hair count and ability to smile!
What is most interesting to me in all of this is that I am a smart woman – I am incredibly health conscience, trained in research from having gone to law school and worked as a trial attorney for many years plus, I care deeply. In fact, my care goes so deep that when I was diagnosed with the dairy intolerance, I started this website. That was years ago and long before my celiac diagnosis. I wrote about celiac for many years while, ironically, I unknowingly had the disease myself. I sat in front of my computer, writing articles for this website, while taking breaks to scratch and sleep. My blood tests for celiac always came back falsely negative. I never came across dermatitis herpetiformis in any of my research until I was at my wit’s end with my own symptoms. Nor did I come across the correlation between hypothyroid and celiac (and gluten intolerance too) until years after I created this site. And apparently, neither had my physicians. To me, looking back, it is all so obvious what was going on. Likewise, it is simply unacceptable to suffer needlessly. I know I am not the only one. There are tens of thousands of people out there experiencing the same debilitating way of life that I was living before diagnosis.
My point… There are many of us who have unnecessarily suffered with horrendous symptoms, attempting to go about our days and nights living as normal as we possibly can. For some, celiac (and food intolerances) has what appears to be a minimal affects; it remains mostly “silent.” For others, the we go down an insidious and misdirected journey that just about takes our lives from us. I want that for no one. It is pointless to suffer in such a way. My goal with this site is to raise awareness for both the layperson as well as physicians so that the suffering at the hands of gluten intolerance and celiac disease can be eliminated. Further, for those of us with gluten intolerance and celiac disease, this website can be utilized for living safely gluten free.
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