Are there any Coeliacs who had negative results from the blood test?

oopsadaisydoddle

2tonsils wrote: »

Don't give up the search for what is wrong...it took me four years to 'prove' I was celiac..before that they blamed everything from my age to my imagination. Depression and anxiety can be caused by gluten intolerence and the skin problems certainly can. I live in Greece and if you have a close relative they will do DNA tests to see if you have the gene for celiac disease.
Mine was confirmed by the endocrinologist when I went along complaining about my thyroid..he confirmed I had Hashimoto's thyroid which is another auto immune disorder like celiac disease.

The blood test antibodies were off the scale and he made me come off gluten immediately. They did not let me do the biopsy as I have a true allergy to wheat and had anaphalactic shock due to trying to eat it for a test.

Please don't give up trying to find out. I feel amazing now I am gluten free.

Thanks for this. I do sometimes feel like it must be my 'imagination'. This is mainly because I have had anxiety and depression anyway on and off for years and after having my youngest, I was hit with the health anxiety. I was at the surgery practically every week with some ailment so now I feel that the GP is going to just think I'm imagining it!!

I've come to terms with the fact I am susceptible to anxiety and depression and am the first to admit when I don't feel great..I don't try and hide it and am the first to ask for help. This is why I know these symptoms are not in my head!

I had a busy morning this morning and ended up falling asleep on the sofa this afternoon...sometimes I can't stop myself. I still haven't been back to the GP because I'm a bit worried he'll shoo me away and that will make me feel rubbish in itself. I know I probably need to bite the bullet and go though.

I have contemplated just going gluten free but I know that it's not best if you do eventually get sent for testing.

Thanks again.x

noelphobic

I believe that if you have a close relative with coeliac disease you have a 10% chance of getting it yourself.

trigger2

Hi Oopsadaisy

Did you contact the Coeliac society ? I've had gastric symptoms for approx 3 years now, getting worse, but I haven't lost much weight. Gp did a blood test that came back negative, that was a few months ago. they did put me on iron tablets as I am anemic.

Today has been awful after I had some weetabix early this morning, have just spent the day in the loo. I emailed the coeliac website, the upshot being they said I should push my gp to refer me for a biopsy given my symptoms. I know you have to continue to eat gluten until any diagnosis is made.

I fee completely drained and fed up with all of this. My docs appt isn't until 1st Nov, that's the first one I can get. I have booked into get my bloods redone first to see if my iron level has gone up any.

Not really any advice, just from someone in a similar situ

Hugs

Trigger

absolutebounder

Most IBS is stress related rather than diet however modern food contains many additives that can affect people differently. I would go for a low carb diet (not extremely low) eating fresh meat vegetables fruit etc. I would try first cutting out bread and see what happens
Avoid low fat stuff from shops as they tend to be loaded with things like refined carbs and sweeteners like aspartame Fat is needed in a diet anyway as it has a lot of beneficial properties. And dont even think of margerine.

oopsadaisydoddle

trigger2 wrote: »

Hi Oopsadaisy

Did you contact the Coeliac society ? I've had gastric symptoms for approx 3 years now, getting worse, but I haven't lost much weight. Gp did a blood test that came back negative, that was a few months ago. they did put me on iron tablets as I am anemic.

Today has been awful after I had some weetabix early this morning, have just spent the day in the loo. I emailed the coeliac website, the upshot being they said I should push my gp to refer me for a biopsy given my symptoms. I know you have to continue to eat gluten until any diagnosis is made.

I fee completely drained and fed up with all of this. My docs appt isn't until 1st Nov, that's the first one I can get. I have booked into get my bloods redone first to see if my iron level has gone up any.

Not really any advice, just from someone in a similar situ

Hugs

Trigger

Hi
Thanks for asking.

I haven't been back yet but have an app on thurs for something else so will mention it then.

It is awful not knowing what it is. Like I said, I'd love one day to wake up feeling refreshed and not shattered as usual.

Keep me posted on how you get on. I do hope things pick up for you.

2tonsils

absolutebounder wrote: »

Most IBS is stress related rather than diet however modern food contains many additives that can affect people differently. I would go for a low carb diet (not extremely low) eating fresh meat vegetables fruit etc. I would try first cutting out bread and see what happens
Avoid low fat stuff from shops as they tend to be loaded with things like refined carbs and sweeteners like aspartame Fat is needed in a diet anyway as it has a lot of beneficial properties. And dont even think of margerine.

I do agree with you but if the OP is going to go for tests for celiac disease later its important that she keeps the gluten in her diet. It is extremely hard to do this if it makes you ill but if you don't keep it in till you have the tests done then you may get a false negative result.
I am so pleased that you mentioned keeping fats in the diet, I could not agree more..good fats and oils are essential to good health.

I am glad my comments helped. Please go back to the doctor and explain how you feel and that you need the tests doing xxxx

oopsadaisydoddle

absolutebounder wrote: »

Most IBS is stress related rather than diet however modern food contains many additives that can affect people differently. I would go for a low carb diet (not extremely low) eating fresh meat vegetables fruit etc. I would try first cutting out bread and see what happens
Avoid low fat stuff from shops as they tend to be loaded with things like refined carbs and sweeteners like aspartame Fat is needed in a diet anyway as it has a lot of beneficial properties. And dont even think of margerine.

I've just restarted slimming world. I usually tend to stick to red days which are mainly meat and fish and I have veg with them.

My IBS does get worse with stress but I just wish I could help it somehow!

nightsong

I know this thread is rather old, but just in case anyone is still reading -

My cousin was diagnosed with celiac disease last year. After discussion with her, and lots of reading online, I came to the conclusion that it's extremely likely I also have it.

So, I cut gluten out of my diet to see what happened. The result was that I felt much, much better. Not only did my ongoing digestive problems clear up, but so did most of my anxiety and depression, which I'd suffered from for decades. Also, I had been suffering increasing problems with joint pain and these have mostly gone too. All of this is readily explained in terms of the inflammatory effects of gluten-containing foods.

I briefly considered having tests, but when I read that you have to back on the gluten for it, that was ruled out straight away.

And the thing that then occurred to me is - why would you want to have a test anyway? Why not just stop consuming gluten and see if you feel better? If you have diagnosed celiac disease, your doctor will tell you there is one simple treatment - stop eating gluten! That's it!

Why do you need anyone's permission to do this? It's not as if gluten is good for you - you can be perfectly well nourished without it. It's true that it can be a little inconvenient socially, and you have to adapt what you regularly eat and cook, but it's no big deal, and so much better than feeling terrible all the time.

Anyway, just my opinion of course - but I'd be interested to hear why, exactly, people are so hung up on testing, diagnosis and "expert" opinion for celiac.