Is it worth eating gluten again to get tested?
Posted , 5 users are following.
I cut out gluten around 3 months ago now and I've been feeling so much better, but when I spoke to my doctor last week she told me I should get tested for coeliac. I told her that I'm fine with not knowing because I don't want to eat gluten again for 6+ weeks, and she was insisting that I could get an accurate result on the blood test without having eaten gluten since January!! Safe to say I'm changing my doctor, but now my mum is trying to pressure me into getting tested. She's refusing to accept that my doctor was wrong about something, and she's completely insisting I eat gluten to get tested. I accidentally ate gluten a few days ago and I've been in agony ever since, I don't want to put myself through that but she won't listen. Any advice? (Also, I'm 20 but still living at home so avoiding conflict with my mum is important!)
1 like, 3 replies
lynda01728 caitlin02656
Posted
Hi Caitlin,
Mmmm it does sound like you may be Coeliac and it is something you do need to know for sure. If you are it really is most important that you avoid all gluten as even if you don't feel ill the gluten will absolutely wreck your gut.
After years of deteriorating health and very useless GPs (they tend to know nothing about Coeliac Disease-no financial incentives for them to find out! No pill will cure us) I also gave up gluten and realised this was the problem. My blood test came back negative but because I was so ill the GP referred me to a Gastroenterologist at a major teaching hospital. I was given genetic testing which came back positive and he said that I was a 'text book case'
3 years on I don't feel like the same person and realise I have been battling all my life (I'm 55).If things had continued I really think I would have died.....I just was so ill.
Genetic testing is expensive and not routinely availabe but it is an option and you do not need to be eating gluten. I refused the 6 week challenge(as they call it).You will need to be very proactive to get anywhere with this. We are not taken seriously at all. I was originally diagnosed with a virus, then told it was the menopause and finally put on anti depressants. I coninued to get more ill and grew weaker and weaker, I couldn't see properly, kept falling over, couldn't remember anything, heart palpitations, shaking......the list is endless. I was tested for just about everything but only Coeliac when I presentd with a rash all over my stomach.
You are young,,,,,I really hope you get sorted soon. Do not give up.....you know your own body better than any doctor and even your Mum. If you feel strongly that gluten is making you ill as I eventually did then never eat it again.
Best wishes
Lyn
FA54321 caitlin02656
Posted
Hi Caitlin,
It's a hard choice to have to make, and only you can decide what is right for your body. Six weeks of eating gluten every day is hard going if you do have coeliac disease, but if you do have it, you will get help from NHS and also coeliac UK are very helpful. Just remember that blood work alone may not confirm you have it. A lot of people get 'false negatives' so you will need a follow up endoscopy with biopsies, so you would need to continue eating gluten even after your blood test. At the end of the day, it's your body and your choice.
natcann caitlin02656
Posted
Hi there. I really think that you need a proper diagnosis. CD is a disease of the autoimmune system and if you have it you can also be susceptible to other things such as thryroid disease. I have just been tested for an underactive thyroid because I have CD. When I was first diagnosed in 1998 I also had to have frequent tests for ostoporosis and was found to be osteopaenic which is the pre-condition of osteoporosis. My grandson also has CD. He had 2 negative blood tests but had all the symptoms so had the genetic test and was found to be carrying the gene. He then had the biopsy and was found to be positive. He is 15 yrs and is a different boy since going GF .We were told that carrying the gene does not automatically mean that you will get CD but that you can't get it unless you carry the gene.I have 5 other grandchildren and they are all going to be tested for the gene.Their parents have to have it done privately because as it is expensive the GPs wont refer (because of funding) unless the kids have all the symptoms of CD which they don't. However, I didn't have bowels symptoms and was initially diagnosed as having ME because my GP at the time couldn't find out what was wrong with me. I was lucky that I moved house and got a new GP who suspected that I did not have ME and tested me for CD. Hope some of this is useful. Good luck