So Confused, positive bloods negative biopsy

[chris34]

Good afternoon

I am so confused I recently went to the Dr. after getting a lot of mouth ulcers. I suggested a full blood test MOT including Coeliac.

It came back positive for Coeliac I am pretty sure I scored 13 if that means anything anyone I believe 0-4 is negative 4-10 is possible and 10+ is positive am I correct?

Anyhow he referred me for a biopsy which I had done and will never have done again (awful experience) I was told my Dr.'s would be in touch 7-10 days heard nothing so phoned them today and reception has said it has come back normal!

I eventually managed to persuade her to book an appointment to speak to my Dr. again but not until middle of July.

I have been eating gluten free since the biopsy, am I right to do that? Do I have coeliac? any advice gratefully received.

[mgee]

This was exactly my situation earlier this year. Positive bloods at 34 but negative biopsy. Dr stated ."categorically do not have coeliacs". All other tests which could result in posible positive bloods were also negative. Dr concluded i am one of the rare false positive test results.

I have however decided that although this could be true,it could also be that the biopsy missed the damage,or I could have the potential for coeliacs without current damage. I've read lots -thanks to sites like this - and decided to change my diet. ..currently wheat free but aiming for gluten free. I'm doing it slowly,in part because I don't have a formal diognosis to motivate me.

I came to the conclusion that the Dr's are only going to treat what they can prove. It's up to us as individuals to take a bit of responsibility for finding out what makes us healthier.

[Hidden]

Hi Chris34, this is very interesting and I'd ask your GP to refer you back to the Gastro as they are specialists and have seen it all before. I also agree 100% with mgee that the biopsy may have missed any damage.

Now this came up on Celiac.com so here's a link:

celiac.com/gluten-free/topi...

And there is a really good answer, that if you go gluten free and then have another blood test the IgA should be negative. This is the route I'd take and I'd see if I felt better and the mouth ulcers cleared up

So good luck with this and do let us know how you get on and lastly if you are a coeliac or are gluten intolerant then you're in good company on here.

[Seisha]

This is terrible Dr doesn't accept fact that we are better without gluten! Depressed for years with skin conditions ... Now being healthily as never , asthma gone.

Bowel heal when you not eating gluten ... And blood is clear ...

So angry and disappointed ....

[Hidden in reply to Seisha]

Chris34 has only just gone gluten-free (as I read it) so doesn't know if she/he will feel better for it. Jerry's advice is good as that will show if there has been any change.

[Curiosity7]

Hello Chris34,

I have been through the utter nightmare of trying to find answers to my gastro-intestinal problems that I've had intermittently from a young child. It took the medics well over 15 years to find a reason and not until a few days before my 40th birthday did a doctor even hint at the term Coeliac or Gluten Free!

The main thing with these issues is not to give up! Keep asking those questions and if, ultimately, after all the nasty conditions have been tested for there is still no definitive diagnosis then you will need to decide what to do. That is, if a Gluten Free (GF) and Wheat Free (WF) diet solves the physical problems that you are having (say after six months or so) then stick with it and make sure you inform your doctor what you are doing so you can maintain their support.

It is by far, one of the most difficult times of a person's life when placed in this situation. The main thing is to eliminate all the serious conditions such as the cancers, diabetes and other nasties. Once you are at that stage if there is still no firm diagnosis then try the GF diet for a longer period to see if it reduces or eliminates the symptoms. Only then should you consider staying on a GF & WF diet.

If you were on a GF diet before your biopsy was done this could be a reason for it being normal! To obtain a positive result for damaged villi in the gut you must be continuously eating non-GF wheat and gluten laden foods, otherwise the test is pointless.

I have been GF & WF now for over 17 years and it made little difference to my various conditions for the first 18 months to two years because I was so seriously ill (on the verge of death). However, for most people who do not have such severe symptoms it can take as little as four to six weeks for signs of recovery to be experienced. The problem is that we are all different and there are no hard and fast rules when it comes to food intolerance. With Coeliac Disease even though some people do not get a definitive diagnosis through the "Gold Standard" biopsy method you must remember that it is not 100% accurate! Some people do not get a positive biopsy result nor a positive blood test even, but are still Gluten or Wheat intolerant. I am one of those people! The key things in my case were malabsorption (via a fat test) and folic acid anaemia (vis a blood test) which ultimately led to chronic malnutrition.

There are lots of web-sites with endless information about the subject, but the first place to visit is the UK charity: coeliac.org.uk/home.

For more links try: about2.wordpress.com/coelia....

The only way is to eliminate everything else first, then if the medical professionals are still totally clueless (as in my case), that is when to go GF & WF! Remember, there is no such machine that can replicate a human body! So there cannot be any certainty that a human is not Gluten or Wheat intolerant just by getting a test done. A test is only a guide to assist with diagnosis, it can never be "definitive proof" for everyone! ~ Your body is the only thing that can provide the true reaction and is the ultimate testing ground.

Keep asking questions, it's the only way!

Curiosity7

25 June 2015.

[girrafffan]

This is so close to my story that I could have written it, right down to the bit about the experience of the biopsy!

I saw the doctor today as I really don't know which way to go now, and she suggested continuing to eliminate gluten for a while longer and then reintroducing it to see how I react.

I feel totally out on my own now as I don't have a diagnosis for my symptoms and I've been pretty much discharged from the hospital system as a result of my negative biopsy.

I'm going to carry on avoiding gluten for the time being as I have definitely noticed an improvement since I stopped eating it and I want to see if these improvements continue as I am so tired of feeling exhausted and unwell.

[chris34]

Thank you all so much for all your replies. It is a relief to here other people having similar experiences.

I have been gluten free since the biopsy although I fear I have been glutened at somepoint as had a very rough day couple days ago.

I have an appointment with my doctor on 14th July and I will certainly update the thread and continue to look through this forum it looks a fountain of knowledge.

Thanks again!

[Toodlepip]

Sorry to hear you have had a tough time.

I was the other way round when I was diagnosed 20 years ago - negative blood test but so many symptoms / b12 deficiency / folate /ferritin that my consultant did the biopsy as he was convinced I had it (in those days the biopsy was using a device called a crosby capsule which took ages!) The biopsy was positive, I was referred to a dietitian everything improved on a GF diet, subsequent biopsies showed my gut had healed.

If you feel better going gluten free then I would stick with it - there is so much more food available now and good advice and support from the Coeliac Society - I find them invaluable.

Hope you get some good advice and support when you see your doctor in July and that you begin to feel better soon. ☺

[Jacks]

What would I do? If you hated the endoscopy test, and the biopsy found nothing but you feel better on a gf diet then I'd stick with the gf diet. Your numbers sound low but it depends what numbers you're citing as there are 4 different blood tests. All mine were maxed out and the biopsy showed I had a high Marsh score.

It could be that you do have some other inflammatory bowel disease - inflammation of the oral mucosa may be the only outward sign of Crohn's disease (aphtous, mouth ulcers). If you were referred to a gastroenterologist and they performed the endoscopy then I would ask them for another appointment otherwise you're waiting for another referral. Do this before your GP appointment.

If they do you will have to have a different endoscopy (the other end) - not as bad really, you can see the telly image of your inners while it's happening and you won't gag!

[Jacks in reply to Jacks]

Omitted the crucial bit:

dermnetnz.org/systemic/ibd....

[chris34]

Thanks again for all the replies. I have since received a letter from the hospital actually confirming I do have Coeliac disease.

Apparently the hospital shouldn't have told me to ring Dr's as the reception staff cant see results so apparently everything looked normal to them however it clearly wasnt!

Kinda a relief to get diagnosis as because like the Dr said today a male at 27, 5ft10 shouldnt weigh as little as 8 1/2st so now have a reason of why it has happened!

Been referred to a dietitian to help try and get some weight on, although have been told cant get anything on prescription as they have stopped prescribing!

[bd79og]

I too had a positive blood test which was just one of a panel done after some serious "allergic" reactions which appear to have been due to intolerance of sulphites and salicylates. A later biopsy showed no signs of intestine damage and I dismissed it all as a false positive and thankfully my asthma stabilised on montelucast. 4/ 5 years later I started to find I was reacting again to many things and had a really traumatic stay in the high dependency ward. Since then I've been very food intolerant (and smells and chemicals) and have taken over a year to stabilise the asthma on a very restrictive diet which is free of salicylates / histamines / dairy / gluten. Being gluten free seems to help and I'm currently looking to see if my thyroid may be mis-functioning due perhaps to autoimmune thyroid disease which may be linked to damage caused by gluten as I still feel really ill a lot of the time and can not expand my diet at all without severe symptoms.

I notice that the current advice is to retest any positive blood test patients who have a negative biopsy and certainly I may not be where I am now if any potential problems with gluten had been more carefully monitored.

So do go back and pester the doctors and keep in mind that the blood tests have a low rate of false positives it may be that gluten is damaging your system in some way but not your small intestine.