I first began testing for Celiac in June 2009.
I had become very ill, I had vomited just the once. Everytime i ate it went straight through me and I lost a stone of weight in a month.
I went to the doctor as my weight loss made me very underweight. I had a blood test which came back with Anti ttg levels 4 times higher then they should be, an inflamed liver and abnormal thyroid.
After a few weeks i went for an ultrasound on my liver as well as another blood test.
The ultrasound showed my liver was normal as did the blood test.
My ttg levels were still high and my thyroid still abnormal.
I also went for an endoscopy which came back negative.
This particular doctor diagnosed me with lactose intolerance and left it at that.
I was not happy with this diagnosis as i’ve never had a reaction to milk or any other dairy. My GP also didn’t seem convinced and put me on 3 monthly blood tests.
When i went for the first 3 monthly blood test my thyroid seemed to have come back normal but my ttg levels were still high my doctor called me into the office and asked how i was feeling and at the time i was not symptomatic.
I was then put on 6 monthly blood test for the next 2 years.
I was only being tested for full celiac panel, Iron and some vitamins and full blood count.
Everything came back normal except the anti ttg which at it’s lowest result was still double of what was considered ‘normal range’
AS i was not having symptoms all the time my doctor said he would stop the bloods and just leave me be as It may be latent celiac. I was instructed to live normally and only return if symptoms came back.
In 2012 I’ve been back to the doctors twice for this the most recent was last month when my celiac symptoms came back in full force, they took my bloods and again blood count was fine and i showed no sign of malnourishment other than weight loss but the pesky ttg was still triple as high. My GP has now said to go gluten free or put up with the symptoms.
Again not happy with this result, I do not want ot have to go gluten free if there’s not a need I did lots of research and I am not at a point in my life where i want to read every food label or not eat out with friends if i don’t have to.
So my question is what is wrong with me?
If it was celiac surely I would have symptoms all the time.
Yes i have trouble with bowel movements now and again but who doesn’t, and I’ve always suffered with bloating but then so does my partner.
At present I’m in the middle of another ‘flare up’ So far 8 days now. I’ve not been bloated so much abut have been eating less as i’ve lost my appetite. I’ve lost 4lbs in 1 week (at my current weight this is a lot to lose in a short space of time) I’ve got stomach cramps almost all the time. And bowel movements have been much more frequent and much less ‘stable’
I’m under a lot of stress at the moment so not sure if this would cause a flare up.
I’ve tried googling as to what other reason would cause me to always have high anti ttg levels but have not yet found any conclusive answer, surely it can’t be just ‘normal’
Also to add my mum suffers with stomach problems but the doctor diagnosed her with Irritable bowel syndrome.
Any advice welcomed.