Last year I went completely gluten free without a diagnosis. (I did this because doctors had tested me for Celiac before and said I wasn't Celiac, so I started to think it was gluten intolerance). I went through horrible withdrawal symptoms for 3-4 months, and then I started to feel loads better. After a while, I finally got through the waiting list to have my endoscopy. But by the time I had it, any damage that had been done was healed. Then when I tried to do a "gluten trial" so I could damage my intestines again to get a diagnosis... the symptoms came back worse than ever and I ended up in hospital. So I went back to a gluten free diet. After a while, people started to convince me that I had a psychiatric condition rather than a gluten intolerance. So I started having traces of gluten here and there, trying to build up tolerance to it and trying to convince myself that it wasn't hurting me.
I have finally been diagnosed with Celiac through a blood test and the worsening of symptoms that occurs after I eat gluten (determined by a dietition). I had been eating a low gluten diet when I had the blood test, so it showed up weak positive. The doctor said if I'd been eating a normal gluten diet, it would have been strong positive. I asked the doctor why it hadn't shown up in my blood tests a couple years ago, when I was eating a full-gluten diet and I was completely bedridden. He said that I am IgA deficient, and the other doctor hadn't considered that when they tested me before.
Points of the story:
- Don't go gluten free without getting a diagnosis first, or your symptoms may come back way worse if you have to start eating gluten again so that you can have an accurate endoscopy.
- Ask if your doctor has ordered a TtG blood test that tests for IgA deficiency as well - if this shows up positive, she should refer you to a gastroenterologist for an endoscopy.
- My advice is don't go gluten free until after you get the blood test and/or endoscopy results.
I hope you get an accurate diagnosis and proper treatment soon :)
Conditions: Fibromyalgia, chronic fatigue syndrome, chronic pain syndrome, irritable bowel syndrome, food intolerances, complex regional pain syndrome, anxiety, allergies, atopic dermatitis, low immunity, tinnitus, restless legs syndrome, scoliosis, etc.
Goals: to be an occupational therapist; to explore the world.
"Reach for the moon; even if you miss, you will land among the stars."