I believe I have NON-CELIAC GLUTEN SENSITIVITY. Everything I’m about to share is based on changes I observed in my body after going off gluten, as well as any online research I’ve done independently. I’ve never been given this label as a medical diagnosis, nor have I ever tested positive for celiac disease.
Usually, one starts at the beginning to tell a story, but I don’t know where the beginning begins. So I’m going to pick a point in time when I first noticed something was amiss, which was seventeen years ago in 2004 after the birth of my third child. I remember my hands felt like two balloons, yet there was no swelling or anything outwardly mirroring my complaints. My ankles also hurt immensely. Granted, the body goes through an upheaval during pregnancy and birth, but I didn’t experience these sensations with my two older children.
A few months passed and the symptoms didn’t go away. My mom suggested getting checked for rheumatoid arthritis. The RHEUMATOID FACTOR in my blood was so high that it surprised even the doctor. Let’s pretend Zero is what it is supposed to be (not sure what the actual number is) and mine was in the upper hundreds! There was no evidence of rheumatoid arthritis and x-rays and physical examinations never indicated joint damage indicating the condition.
Thankfully, over-the-counter Naproxen generally alleviated the symptoms, but during flare-ups, it only provided minor relief. So at this point, I had no diagnosis, a skyrocketing rheumatoid factor, and constant aching fingers and ankles.
Fast forward a few years. Seasonal allergies, especially mold and pollen have plagued me my entire life, but as far as I knew I didn’t have food allergies. With what seems like an epidemic of food allergies, sensitivities, and autoimmune diseases, I suspected the elevated rheumatoid factor was related to this but had no evidence or proof. I went to an alternative practitioner who told me I was sensitive to the casein protein found in milk, not the lactose as most people presume is the culprit for digestive distress. While I didn’t avoid dairy, I noticed drinking milk and eating ice cream to be problematic, but didn’t notice as much a problem with processed dairy like yogurt, cheese, and cottage cheese.
Fast forward a few more years, I was tired all the time. The saying is that all moms are tired, but I shouldn’t need to crash in the middle of the afternoon and push myself to get through daily tasks. Bloodwork has often shown I’m anemic, so I take iron and the numbers improve slightly. I would eat all day, grazing on nuts and cheese and other things I believed were good for me and would provide energy. I had no increase in energy and the only thing increasing was the size of my clothes.
In my post My Journey to Alternative Health and My Crazy Diet to Go With It Part 2, I wrote how I went to another alternative practitioner. I wanted to know what I should/shouldn’t eat. I had been going in circles wondering if I should avoid wheat, dairy, corn, eggs, etc. to see if anything would make a difference.
After doing the assessment, she said my body was sensitive to wheat and yogurt. Not the categories of gluten and dairy, but merely wheat and yogurt. I thought perhaps this was the answer I was looking for. Despite switching to spelt and removing yogurt, there was no difference in my weight which actually increased, and my energy level which was still very low.
At this point, I began to be suspicious that I might be sensitive to gluten. I would get this weird inflammation/rash on my face in the same exact spots each time. I would get intensely itchy all over, including my scalp. After checking for bugs, and thankfully never finding any, I knew it wasn’t dandruff and it wasn’t bugs. I thought the rash and the itchy skin were hormonal, as it seemed to happen around the same time each month. I was craving and indulging in cheese, sweets, peanut butter, and carbs during this time but not equating that to my symptoms.
After researching the symptoms, there seemed to be a strong possibility of gluten sensitivity or allergy. I had been tested for celiac in the past and each time the results were negative. However, the allergy markers and rheumatoid factor were always high, so something was going on internally.
Fast forward again to June 2021. At a friend’s recommendation, I went to yet another alternative practitioner. She used something called a quantum resonance magnetic analyzer. In the thirty-minute appointment, I learned I was anemic, my sugars were unbalanced, my thyroid was low, and I was deficient in multiple vitamins. I was given a meal plan and the times I should eat, and a list of what I could eat, what I couldn’t eat. The most notable of news was I was HIGHLY SENSITIVE to GLUTEN, DAIRY, SOY, and PEANUTS. Finally, and answer and VALIDATION for my suspicion.
According to my doctor, my blood work was fine and clinically was not anemic. According to this alternative testing, I was anemic. When I went home and researched the vitamin deficiencies, they were almost an exact match to someone with celiac disease, however, I don’t have celiac so I’ve diagnosed myself with non-celiac gluten sensitivity. Whether that is accurate is irrelevant, as I have stopped eating gluten. Since June, dedicatedly following all the recommendations, I have lost 12 pounds, regained my energy, fixed my anemia, and my skin is clear.
Before a follow-up appointment, I had the doctor order bloodwork. I showed her the printout of the results. I hadn’t mentioned the rheumatoid factor previously, but she saw it. The number, only two digits, was hundreds of points lower than what it had been. She said the dairy is causing inflammation in my joints, as was the gluten. Voila, a seventeen-year-old mystery solved. That explains the reason for the joint pain and rheumatoid factor. She said the number should be zero, but comparatively, I’m doing amazing. The one thing I can’t do is cheat on dairy- no more ‘once in a while’ slices of cheese or dairy chocolate, and if I keep it up, the rheumatoid factor should go down even lower, aiming for zero. Since I was whining about craving dairy, she said once every two weeks I could have goat or sheep cheese and that’s it. Instead of being upset, I am elated because I can look forward to that treat.
Is any of this “easy”? Not easy, but sustainable. If I “cheat” things may be tasty on the lips but I’ll suffer the side effects for days following the incident and after enough times I’ve come to the conclusion, it’s not worth it, so I better have an acceptable substitution, as will power often isn’t enough.
To summarize, my suspicion that something was spiking the rheumatoid factor and it took years and non-standard medical practitioners to unravel the mystery. Plus the intuition that the ‘something’ was food-related. Now that I have answers, I can move forward and work toward optimal health by starting with what I can and can’t eat. I don’t feel deprived in any way, as I have found alternatives to my favorite foods, even non-dairy, non-soy cheese substitutes. I even had gluten-free donuts and gluten-free latkes on Chanukah!
If you’re on a quest to discover what ails you, consider a food sensitivity to be the root cause, and don’t stop investigating until you get answers. If a doctor doesn’t believe in non-celiac gluten sensitivity or that food sensitivities can wreak havoc on the body, consider finding a doctor who supports you and adding some alternative medicine practitioners to your health care team. If you discover food is causing what ails you, there is so much out there whether support of others with the same sensitivities, websites, recipes, and substitutions for your favorite things. Never say ‘I can’t change’ because yes, you can, and you’ll feel tons better afterward.