Tested negative for ceoliac disease but still feeling all the symptoms

cubesea

Hi everyone!

I would greatly appreciate if anyone could help me out. I have been experiencing all the symptoms of ceoliac disease for the passed 4 years. Im 22. I got tested a couple a months ago and everything came back fine except it sai'd that I had h.pilori but that it cleared away itself?! Im getting really frustrated as I don't know what is wrong with me. Usual symptoms are headaches after meals, bloating and extreme tiredness. A few of my friend have noticed a change in my mood but I dont know of this is directly relayed. Im a bit confused as I could go one week eating gluten and not experience strong symptoms And then the next week I will have loads of symptoms..I tried a gluten free diet for a while. Felt great but doing it was too hard and if I havnt tested positive for ceoliac I thought, what's the point? Symptoms worsen when I eat bread. Sorry this post is so long but would appreciate anyone's input!

Stench Blossoms

What did you find so hard about the gluten free diet?

I was tested earlier this year and it came back negative. The doctor told me that a lot of people get false negatives because if you are currently on a gluten free diet that the anti bodies are/aren't present (Can't remember which one he said) and it will show that there is no intolerance. (I had less than 2 weeks to 'prepare' for my test. He said that most people start 6 weeks beforehand by eating gluten)

I'm not sure if I am actually coeliac or not but I'm defiantly wheat and yeast intolerant. I removed both of them from my diet and didn't have any of the symptoms I was having before.

My suggestion would be to remove them for longer than a week or two and see how you feel.

cubesea

Stench Blossoms wrote: »

What did you find so hard about the gluten free diet?

I was tested earlier this year and it came back negative. The doctor told me that a lot of people get false negatives because if you are currently on a gluten free diet that the anti bodies are/aren't present (Can't remember which one he said) and it will show that there is no intolerance. (I had less than 2 weeks to 'prepare' for my test. He said that most people start 6 weeks beforehand by eating gluten)

I'm not sure if I am actually coeliac or not but I'm defiantly wheat and yeast intolerant. I removed both of them from my diet and didn't have any of the symptoms I was having before.

My suggestion would be to remove them for longer than a week or two and see how you feel.

Thanks very much for taking the time to read my post. I was very sick the week before I got tested, very nautious and I got very bad headaches. During that week I barely ate anything because I felt sick afterwards although I did eat gluten free bread. This started 4 years ago when I ate loads of Pringles and had severe cramps in my stomach and I went to a&e. Thu sai'd there was a high level of white blood cells? Is hay anything to do with it? I keep just brushing this aside.

Hanley

What were you tested for exactly? There's a number of different tests that look @ wheat intolerance/coeliac disease and depending on what your issue is, the test may be inconclusive.

If you feel better eating gluten free and your symptoms disappear, stop eating gluten.

Even if you're not gluten intolerant, you'l feel better for it.

Brian?

What tests did you do? Was it blood or endoscopy?

clairebomb

Hi cubesea, I have to agree with the above comments, if wheat/gluten doesn't agree with you, stop eating it -simple as. It's not hard, it just takes time to get used to it and you need to have self worth to respect yourself enough to be good to yourself - of course its worth it!!!!!
I'm undergoing coeliac teating at the moment myself, my bloods were -ve and am waiting on biopsy results. I've been advised, and was going to do it myself anyway, to follow a coeliac diet. I feel mush better off gluten/wheat than on it.

Also note; there has been a recent discovery of non-coeliac gluten sensitivity see link: http://www.drbriffa.com/2012/11/30/gluten-sensitivty-in-the-absence-of-coeliac-disease-exists-it-really-does/

Might explain your symptoms

metamorphosis

Regardless of test outcome ,isn't common sense to stop eating it considering the effect it has on you which will be pretty bad for gut health in years to come and also considering how great you felt gluten free.

To be honest, bit of a no brainer to me

moneymad

Modern wheat a "perfect, chronic poison," doctor says

http://www.cbsnews.com/8301-505269_162-57505149/modern-wheat-a-perfect-chronic-poison-doctor-says/

I'm now off eating loads of bread an never felt better.

babs41

Hi my daughter (19) was diagnosed about 2 years ago by endoscopy, I think this is the best test to get to be sure.

tattykitty

cubesea wrote: »

I tried a gluten free diet for a while. Felt great but doing it was too hard and if I havnt tested positive for ceoliac I thought, what's the point? Symptoms worsen when I eat bread.

I think you've answered your own question here - as others have said, if you felt better without the gluten, stop eating it. I was the same as you - I tested negative but felt awful whenever I ate bread. Sluggish, woozy, fatigued and bloated. I ignored it for a long time because I loved my bread (and my morning Shredded Wheat Bitesize!) and couldn't imagine going without it. Then a couple of months ago I finally decided I'd had enough of feeling crappy and cut out bread and most other wheat products. I dropped 3kg and felt much better. I have IBS-C so I still get pains and bloating, but nothing like I used to. It was hard at first to find alternatives, and I still make mistakes, but reading through this forum has been a big help.

At the end of the day you have to ask yourself what's more important - a nice piece of toasted sourdough, or feeling fit and well.

Good luck!

niallb

I had endoscopy at 40 to find out why I was vomiting every single day and exhausted all the time.
There was no positive result for coeliac disease (on the bright side, it was also negative for ulcer and cancer!).

I still cut gluten completely out of my diet, and in week one had stopped vomiting and lost two inches around my waist from bloating.
The mental effects were just as shocking. Take a look online for "brain fog" and learn about what life might be like with that much of an obstacle lifted from you. That was four years ago now, and has been one of the best things I've ever done.

Sure, it's a pain in the neck to keep kitchen surfaces clean, and it takes some getting used to. You need to be constantly strict with yourself.
It will always be easiest to bring your own lunch unless you've very certain about where you're going to be eating.
The best tip I can suggest is to try to not rely on "gluten free" versions of things like bread that you're used to.
Seek out alternative foods that are naturally gluten free, and learn to cook as many dishes as you can yourself
as in the long run it's the simplest way to get gluten free food cooked to your own tastes.

It can also be hard when you realise that most restaurants are not going to come up to the same gluten free standards you can manage at home,
but it's getting better all the time, and if a place can't guarantee you gf, they'll usually tell you. I'm also vegetarian, which cuts down the gluten free options!
If you try to think of it in terms of new things that you'll get to enjoy rather than the old things that you'll miss, it could be better.
Really, how much can you miss feeling that bad!

Hope you get through and find a solution. Feeling things are "too hard" and "why bother?" will often lift when the brainfog clears!
If after six months you genuinely don't feel much better, take another look at it, but worst case scenario, you'll have explored some new foods and learned a bit about just how easy it is to contaminate your dinner! Even if it's not coeliac disease, you'll be equipped to take a much closer look at what else in your diet or environment may be affecting you.

Good luck!

El_Dangeroso

I don't think there is any perfect test for coeliac, you can only usually tell by endoscopy when significant damage is already done.

Like meta said, if it makes you feel bad don't eat it, there is no dietary requirement for gluten. (Though I always recommend people up the eggs and or liver if they give up bread as choline replaces the betaine a lot of people get from bread.)

Brian?

El_Dangeroso wrote: »

I don't think there is any perfect test for coeliac, you can only usually tell by endoscopy when significant damage is already done.

According to the gentleman who put a camera in my belly even the endoscope is not 100%.

The words he used was there is "many flavours of gluten intolerence", you might not be coeliac but that doesn't mean you aren't gluten intolerent. If giving up wheat makes you feel better then do it. It did me the world of good even though I am not 100% strict with a gluten free diet.

An interesting point my GI doctor made was that the % of Irish people with GI problems is disprotionatly high and the % of Irish people who are coeliac is also way above the norm. It was funny after many years of digestive issues that I had to move to the US to be told this, I was never even tested for coeliac disease in Ireland.

hardCopy

Brian? wrote: »

According to the gentleman who put a camera in my belly even the endoscope is not 100%.

The words he used was there is "many flavours of gluten intolerence", you might not be coeliac but that doesn't mean you aren't gluten intolerent. If giving up wheat makes you feel better then do it. It did me the world of good even though I am not 100% strict with a gluten free diet.

An interesting point my GI doctor made was that the % of Irish people with GI problems is disprotionatly high and the % of Irish people who are coeliac is also way above the norm. It was funny after many years of digestive issues that I had to move to the US to be told this, I was never even tested for coeliac disease in Ireland.

It's often referred to as an Irish disease.

I know loads of people here who are affected or have family members affected, yet English and American people I've met have never heard of it and can't even pronounce the word.