I'd just like to get the opinions of some people who have dealt with celiac. I have been feeling off for years, the first complaint that might be celiac related that I went to the doctor for was 7 or 8 years ago - brain fog, feeling out of it. This persisted but a few years ago, I had a total physical meltdown and developed such extreme fatigue that my life became absurdly difficult. I would fall asleep on the way to and from work, standing up, you name it. Weekends were spent sleeping 12-14 hrs a day. I was tested for lupus and thyroid issues as well as general blood work but everything came back normal aside from a constant low grade fever and slightly high white blood cells. In addition to the fatigue, I lost half of my hair, had strange rashes, petechaie and deep fingernail ridges. I was given antidepressants and everything was chalked up to anxiety/depression.
Energy levels gradually improved but on a whim I decided to add a vitamin D test to the panel I have done through my workplace every year. My vitamin D levels were barely detectable. My doctor has had me supplementing with 50,000 units weekly and the highest level I've reached has been 18.
This past fall, I began experiencing chronic diarrhea which has now become a daily thing. I can't remember the last time I had a normal bowel movement. However, there is no pain or blood.
I had to switch to a new primary care doctor and the detailed history she took combined with the diarrhea lead her to test for celiac. The test for IGA deficiency came back normal and my TTG levels were 17 on a scale where anything over 10 is considered positive. I was told to continue eating gluten and come back for a biopsy. After the procedure, the doctor noted that she saw areas of nodularity as well as flattening in the lining of the duodenum which she said could indicate celiac. Here is the report from pathology, indicating that the villi are intact but that intraepithelial lymphocytosis was found:
So, my doctor is thinking it's 'early celiac' and has told me to switch to a gluten free diet (which I have) and see how I feel after a few months. I'm just worried because I thought that TTG would not be positive unless there's a fair amount of damage, so I'm concerned that the damage is elsewhere or not due to celiac. Is it possible that the changes that the pathologist found could cause the positive TTG, diarrhea and other issues I'm experiencing? I'm just concerned because it seems like my symptoms and blood test results are out of proportion with the pathologists findings. I've expressed this concern to my doctor and she stated that since celiac is so patchy, there is often less damage indicated in the biopsy than the blood test since they can miss more affected areas.
What do you all think? Would you pursue any additional testing at this point in addition to going gluten free? Thanks in advance for any advice or reflection you can offer.