Hi,
I've just got back from the doctor and am feeling pretty upset by how I was treated by my doctor. I received a negative result for my bloodtest for celiac despite this being what we really thought it was. They won't test me again for it and I've been told to go back on wheat!!!
Since I was a very young child I have had mouth ulcers constantly, with barely days without any. They are very deep and painful and I've had to take days off work in the past due to the pain.
I get severe stomach cramps when I eat wheat and sometimes they are so bad I'm doubled over, sweating with my stomach feeling like its on fire and tearing. I also have a buring at the entry to my stomach all the time, like indegestion when I eat wheat and its very painful, doctors suspect an ulcer there but the burning goes when I'm off wheat!
I get stomach bloating and have no energy at all which is so different compared to when I am off the wheat.
I get barely any headaches when off wheat and my concentration is better. I so suffer from severe anxiety and depression but I think they only get worse when I'm on wheat due to me feeling all round unwell so not sure thats connected.
I have been off wheat for a year but had to go back on for two blood tests (they tested me for the wrong thing the first time) so they've seen my symtopms go and re-appear within a day of eating wheat twice recently.
I was diagnosed with irritable bowel a few years ago and I've been told its just that and I can eat wheat and gluten again. What should I do?
I know if I eat wheat today, by tomorrow I'll have ulcers and start feeling rotten. I just need to know how to treat my body to be healthy but the attitude of my doctor was so rude and upsetting.
Has anyone actually had a false negative? Is that possible? What would you advise me to do?
DID YOU EAT GLUTEN BEFORE THE TEST? If you have been on a gluten free diet and had the test done, it wont be accurate. It'll probably come back negative even if you do have it.
Find a new doctor. If you want an accurate test you need to be on a gluten diet for (I think) 6 weeks before testing.
But at the end of the day, if you feel better on a gluten free diet, then stay on it. You know your body better than any doctor could. Tests aren't always accurate. And some people may never have a positive blood test, but are far more sensitive than someone with Celiac Disease. For example, my blood test come back low-positive and I decided not to go for a biopsy, just eat gluten free. My Mum had a positive blood test and biopsy and she can accidentally eat some gluten and feel fine. If I eat gluten I'm unwell for a week! My gastroenterologist said I have Celiac Disease, even with a low positive blood test.
I have had negative tests several times. I have been Ceilac for years. I am on a gluten free diet for many years and I have read multiple times that if you are gluten free for a long time you will test out as not having Celiac Disease. HOWEVER, that wouldn't be your case as you have been on and off the diet. Also, one can be gluten sensitive and not have celiac disease. If you have reactions like that there is sure something going on. As the others have stated,if it makes you that sick, I wouldn't eat it. I sure hope you pursue it and find out what it is. Good luck, cbg10
I had the same thing happen. I was diagnosed with celiac disease via biopsy which i understand is really the only acurate way to deturmine if you have celiac . This test was done when i was eating glutin . Of course i didn't know I was Celiac at that time. Then I Changed my primary care doctor and she didn't trust the gastrointestinal specialist that had diagnosed me so she sends me to a difrent gastro specialist. She did a simpl blood test for celiac disease Well the test came up negative. Well its been 3 years since i have stoped eating glutin. I have found out that The blood tests your bodys reaction to glutin . So duh if you are glutin free you will have a negative blood celiac test.
I am in the process of being tested for celiac. First off, I tested positive for small intestinal bacterial overgrowth last week and I am on an antibiotic right now for 2 weeks. The gastro doctor did blood work on me for celiac and it came back negative, but he is not convinced. He told me the only way to really see if you have it is a biopsy of the small intestine and to do that I am having an upper endoscopy in 10 days. He said alot of his patients have tested negative on the bloodwork, but still have the disease.
The test is notorious for not correctly identifying all the people who get sick from eating gluten. So act on what you already know by experience, and set your diet accordingly.
