Negative results
Posted , 3 users are following.
I posted on here yesterday about my symptoms all very in sync with coeliac. Years of diarrhoea/constipation, chronic abdominal pain sometimes so bad I feel like I'm going to pass out, severe fatigue and exhaustion, joint pain, I have an underactive thyroid and also postitive for HLA B27 which are both auto immune.
My tests for IgA levels are 2.7 and states negative.
I've been back to my drs who was so rude and so unhelpful and her initial comment was IBS and when I said I wasn't happy with that asked where I would like to be referred.
Anyway I have private healthcare so I am now going down what route but can a blood test be negative?
I feel like I am going mad
0 likes, 5 replies
jasmine19000 caroline42122
Posted
Yes - the blood test can be negative, in fact it seems to be more commonly negative than positive. You need to eat 4-6 serves of gluten daily for 6 weeks then have an endoscopy - a biopsy of the small intestine to test for coeliac.
If after you've had that done and it comes back negative (it does sound like coeliac to me) have a look into lupus- it's another autoimmune disease that seems to be slipping under the radar a lot like coeliac. Just food for thought anyway... so to speak.
Wishing you the best of luck,
Jasmine
caroline42122
Posted
Thanks for replying. It's seems from reading online I've got a battle ahead of me as it seems like such a hard thing to be diagnosed.
jasmine19000 caroline42122
Posted
It is a battle for most I believe. I'm in limbo myself at the moment but have been recommended a really good specialist who apparently is quite thorough, so fingers crossed it goes well.
I've found GPs are often too dismissive of the symptoms, especially when the blood test comes back negative - mine basically brushed me off and said I could just stop eating wheat if I felt it made me feel better. Very frustrating when you know you have about 99% of the symptoms, and if you do have it, you require a whole lot more than just a gluten free diet. But... we aren't alone, and thankfully there are forums like these in which we can find support and advice to help get us where we need to go, without feeling so alienated.
Keep adding updates on how you go (I'll be doing the same). I think it helps you to vent / share your journey, as well as others to relate with their own.
Try and source a specialist in your area. I find the more you talk to people about it, the more you will come across others who have been diagnosed and will have more information or contacts to share with you.
Wishing you the best of luck!
caroline42122
Posted
Well today I feel like already I've asked a lot of questions. I haven't eaten bread and been on reduced wheat for over 3 weeks now and today I had a sandwich as i know I have to do the gluten challenge and within 40 minutes of eating it my tummy looked 6 months pregnant, I had tummy spasms and a headache and then was so tired.
I hard started to think this is all in my head but today has made me think No I do have an issue gluten. Even if it's not coeliac but gluten sensitivity.
You're right though I am going to keep up today date on this forum as it makes me feel like I'm not alone. People don't really think it's a big deal and question can bread make you really feel so bad. When it makes you feel horrendous x
Doctor_T caroline42122
Posted
I'm sorry you're experiencing this problem. Even if you aren't allergic to gluten, you might still be sensitive to it. I recently wrote about this topic on my medical blog--consider taking a look.
my medical musings
I hope you find relief.
Doctor T
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