Negative Blood Test

[Greyhound]

My blood test results came back negative. The doctors refuses to put me through for a biopsy unless I eat gluten for six weeks beforehand. I told her I couldn't possibly do that. She won't even put me through for it just in case something is picked up. Now it's all left up in the air and I don't know what to do.

Coeliac UK members aren't very welcoming - every time I post a question on their Facebook page, various members say things like 'THIS is why you should get a diagnosis - so you can get advice. You know it's ONLY six weeks.' Oh yeah? And how am I supposed to function in my daily life during those six weeks (and afterwards)? They say I'm not taking it seriously - it's a serious disease. They think I don't know that? The severity of my symptoms is WHY I'm not eating any more gluten.

[beachbirdie]

My blood test results came back negative. The doctors refuses to put me through for a biopsy unless I eat gluten for six weeks beforehand. I told her I couldn't possibly do that. She won't even put me through for it just in case something is picked up. Now it's all left up in the air and I don't know what to do.

Coeliac UK members aren't very welcoming - every time I post a question on their Facebook page, various members say things like 'THIS is why you should get a diagnosis - so you can get advice. You know it's ONLY six weeks.' Oh yeah? And how am I supposed to function in my daily life during those six weeks (and afterwards)? They say I'm not taking it seriously - it's a serious disease. They think I don't know that? The severity of my symptoms is WHY I'm not eating any more gluten.

If you have been eating truly gluten free, it is very possible that it influenced your bloodwork. If you are not eating gluten, the doctors cannot easily tell whether you have celiac. It is also possible they didn't do enough tests. Do you know which blood tests they did?

There would be no point doing a biopsy "just in case". Your gluten free diet also influences the look of your villi and any biopsy will likely come up negative for celiac.

Do you live in UK? (EDIT: I just saw in your profile that you do!) If you need to have the diagnosis in order to access the services/foods available to you there, then you will need to eat plenty of gluten for four to six weeks in order to get a more accurate biopsy. Even then, if they don't take enough samples, you may have damage that gets missed.

If you do not need an official diagnosis, and the gluten free diet has made you feel well, that might be all the answer you need.

Hope that doesn't sound harsh, it is not meant to be. But, if you aren't eating gluten, there is no way to find gluten-damaged tissue!

[pricklypear1971]

The necessity of eating gluten is an unfortunate part of testing and I understand why you wouldn't want to do it.

I break out in a blistering, uncontrollable rash (DH) and have hideous reactions to most drugs and am allergic to sulfa drugs. The odds of me being able to eat gluten for testing are so slim my derm and other doc told me not to do it. So I get it.

It's a cultural thing, I think. I've noticed there are certain sects of the gluten-free community who get pretty snotty about the whole thing - being dx'ed by bloods/scope. To quote Rodney King "Can't we all just get along?".

I don't understand the division, honestly - especially when there are new research discoveries all the time...showing the varied effects of gluten and the vast reports of faulty testing. Not to mention the inability of symptomatic people to get tested by unwilling doctors - resulting in them going gluten-free without testing....or doctors failing to recognize symptoms.

It's all unfortunate. Very very unfortunate.

[mushroom]

I so agree, pricklypear. It is so beyond me why some feel a diagnosis makes them superior to those without -- kinda like a merit badge

[Greyhound]

Thanks for the replies.

My blood test was done within a week of going gluten free. If I'd had high levels of antibodies, they wouldn't have decreased to a normal level within that time.

I was hoping a biopsy could have been scheduled pretty quickly - if my villi were damaged, they would only just have started to heal, but I give up - anything I do now would just delay things even more. I simply CANNOT deliberately eat any more gluten. I was barely functioning properly as it was - I was beginning to think I couldn't work full time any more and it was all I could do just to cook some pasta and stir in some sauce after work on some days (a food that obviously wasn't helping at all, but I didn't know it!). Sometimes I could only bear to pour myself some cereal for dinner. This would be after a nap. Then I'd go to sleep again.

I hate the idea that you should only be helped if it cases damage to your villi. What about damage through sleep deprivation? Through whatever causes my body to feel *constantly* like I have the flu?

I'm glad it's not just me that can't bear to eat gluten just for testing. Please don't take that the wrong way - I don't want anyone to suffer this at all, but I'm glad that I can speak to people who are going through the same as me, if you know what I mean.

Thanks again for your replies x