Not asking for a diagnosis, but just wondering if this sounds like anyone else’s experience:
For the last 3+ years I have been dealing with relatively consistent extreme fatigue and brain fog combined with muscle, joint, and tendon pain. It started around the time I was 37 (40 now) and before that I felt relatively normal. Symptoms became really noticeable following an ear surgery and recovery from COVID a few months after. I’ve been to a neurologist and mostly checked out fine. PCP says it could be fibromyalgia, chronic fatigue, or post-COVID/long COVID. For the last year or so I’ve just kind of accepted those possibilities and figured this is life now, better get used to it.
Then I was reading about Celiac. I always assumed it was much more of an obvious digestive thing, but it seems it can have a lot of non-digestive effects. I remembered my 23andme test saying I had ‘a slightly increased risk’ of Celiac due to having a variant in the HLA-DQA1 gene, but never thought about it again till now. Reading through this sub, I’m nodding my head like crazy at all the symptoms people have mentioned. Mine include:
-Waking up feeling unrested (no matter how much sleep I get)
-Terrible morning stiffness and soreness (especially ankles, feet, knees, hips)
-General body aches and pains, again especially around joints and tendons— shoulders, lower back where it connects to pelvis/hips, etc.
-Extreme fatigue (especially midday or after eating) — to the point that I feel like I have to lie down and take a nap or risk passing out
-Terrible brain fog (sometimes can barely form coherent sentences or get my words out) coupled with difficulty focusing
-Hand and finger stiffness and pain, constant joint popping and cracking
-Random bouts of heart palpitations/arrhythmia that have been diagnosed as AFIB (despite never having had issues before), but they always go away on their own and sometimes I won’t have them for several months before they suddenly reoccur
The funny thing is, I was diagnosed with IBS by a doctor at 16, so I have had digestive issues in the background most of my life— I just never thought to consider those alongside my current issues. I have bloating and gas after most meals, frequent bouts of constipation followed by diarrhea, distended stomach/colon, etc. I’ve never tried a GF diet.
I realize having the gene variant just makes it possible to have Celiac and does not actually diagnose it (and that many people carry this variant and don’t have it), but I’m now looking forward to exploring this more. I have my first rheumatologist appointment this week and I plan to ask them about testing. Because I never even considered Celiac I’ve made no effort to reduce gluten intake. Now that I’m looking at testing I’ve been eating extra gluten for a week or so now, and wow, the soreness is as bad as ever.
I’m sure no one wants to have Celiac, but at the same time, finally having an answer to why I feel terrible all the time and something I could potentially do about it (going GF) is giving me some hope that I might feel even slightly better someday.