I realized in my last post that I didn’t mention the DNA aspect or my symptoms prior to going gluten free. I considered editing my last post to include it, but it turned out I had a fair amount to say, so here’s a separate post about that.
After getting the negative blood test for celiac, when I went gluten free I also ordered a DNA test through 23 and Me (if you want a referral, I’d be happy to send you one – it would give you a discount on the price). I had done a fair amount of reading about the DNA connection to celiac disease, so I wanted to be able to rule it out completely if I didn’t carry any of the at risk genes which are HLA-DQ 2 and HLA-DQ 8.
Once I got the raw data back (about 4-5 weeks later), I ran it through Promethease and found that I carry the DQ 2 gene, which is an increased risk to developing celiac disease. This doesn’t mean that I will definitely develop it, just that I’m predisposed and could develop it at some point in my life. Not a definitive answer, but could be useful in diagnosis at some point if I were to go down that path again.
When I did some further digging on dermatitis herpetiformis, I found that statistics 10%-50% of people with DH are negative on blood testing for celiac. This says 10-37% of people will test negative for celiac. This interested me since I tested negative, but the red, itchy, acne-like bumps sure seem like a mild version of DH to me and they show up any time I’m eating gluten (not intentionally anymore, but when I get glutened, they always appear along with other symptoms). Generally, people with DH don’t have the typical GI issues and here’s some additional interesting information on it. My biggest complaints were the fatigue and brain fog and itchy skin bumps, which I just passed off as part of life. Due to the impaction I had, the stomach pain, nausea, and vomiting brought me to the doctor, which was after a period of a low-FODMAP diet where things had improved for a while. When I realized gluten was the issue for me after doing the low-FODMAP diet, I went back to eating “normally” and that’s when the stomach pain, nausea, and vomiting went into overdrive. My theory is that gluten caused the impaction to begin with and going back on gluten worsened it significantly. Even though I went gluten free, things didn’t really start to improve until that cleared, which makes me think that perhaps I was getting glutened by the impaction until it cleared. This is just my theory – there’s no real science that I can point to and I’m not a doctor. Still, some of the stomach aches persisted, which lead to cutting dairy. That’s resolved the remaining symptoms, but I am still highly sensitive to the smallest amounts of gluten.
I had many symptoms throughout my life that make me think there’s always been an underlying gluten issue that I never connected until now. I’ve had stomach aches (always brushed off as having a “sensitive stomach”), gas (flatulence, belching), intestinal cramps, backaches which ultimately led to a spinal fusion of L4/L5/S1 at age 28 (soon to have another fusion in my neck), fatigue, brain fog, headaches, weakened immune system (got and stayed sick longer than others, multiple bouts of strep, colds, flus, etc.), chronically dry and itchy skin, bumps that were both painful and intensely itchy (worsened in the last year, got them on my scalp off and on throughout my life), nausea and vomiting for no apparent reason, constipation, bloating, decreased appetite and food intake yet gaining weight, horrible menstrual cycles (lots of pain, very heavy, often spotting between), canker sores, easy bruising, edema usually when overheated/hot and in my hands, chronically low iron levels, joint pain (particularly in the hips and lower), nerve and muscle pain in my legs, anxiety, depression, mood swings, issues with dairy (lactose intolerance, but now I wonder if it’s more than that).
It’s funny how you don’t realize these are all issues and that they could be connected. I think this is because they all happen at different times and you only ever treat the biggest problems individually or you think that this is just how others experience life too. Until it stops and you’re able to look back and go… “Wait… this isn’t normal?” or “So THIS is what it’s like to feel good!”
The DNA information, along with my symptoms and severity of reaction to even the smallest cross contamination make me think that it’s quite likely I have celiac. It doesn’t matter to me if I have an official diagnosis, though. I’m going to avoid gluten either way because I feel awful when I get cross contaminated and so much worse if I actually eat gluten. I’m not a doctor, but I do know that there’s a lot that isn’t fully understood about celiac disease or non-celiac gluten sensitivity yet. Perhaps some day I will better understand the why’s. For now I’m fine with knowing how to feel the best I can (no gluten or dairy!).
Soon, I hope to share some gluten free bread experiments I’ve been doing at home! Stay tuned!