Could this all be down to undiagnosed Coeliac or something else?

[Worksop1]

Hi, this is on behalf of my 24 year old son...its a long and very frustrating story so apologies for the long post.

We suspect he may have Coeliac or NCGS so he has cut out bread and has gf pasta and flour now...Dr wont/cant diagnose as he was told he had to eat bread for 6 weeks which he cant do as it makes him to ill.

For approx the last 2/3 years he hasnt been quite right, hard to pin it on anything in particular but the symptoms are weight loss, tingly nerve endings, brain fog, heart palpitations, fatigue, sleeping alot longer than normal, irratabilty (though this could be down to feeling tired), excessive belching after meals (this has stopped since he stopped eating bread and pasta, normal flour etc) and he now has swollen glands under both arms, his groin and neck which are becoming increasingly painful.

He has had a scan and hes convinced they found something but the gp sent a text to say he has a telephone appointment on the 28th and its non urgent?

Yesterday his glands were really painful so he decided to got o the hospital today, hes been on an ecg which they didnt like the look of and he is sat waiting to see what they are going to do...the receptionist has said he has very 'interesting' medical records which is making him even more worried as he dosent have permission to read them (despite asking 6 times)

So here I am worried sick hoping this can all be explained with our initial home diagnosis of some sort of gluten intolerance...btw we have had to go down the self help route as GP never seems to understand his issues.

[toadstools]

Hi he could need b12 injections, and could be anaemic, he is best to do what the doctor asks, to have gluten, as if he is a coeliac, gluten is in a lot of things, best checking, as coeliac is a autoimmune disease

[blowinginthewind]

There are a few things it could be, my thoughts are to stay off google, and make the non-urgent appointment with the GP of your choice within the practice. I don't have official diagnosis because I didn't want to go on gluten again to have it. That is personal choice really.

Liz

[Researchfan]

Hi Worksop1.

Sorry to hear. Hope your son gets the correct diagnosis asap.

Unfortunately gluten has to be in the diet for a certain length of time for correct coeliac disease diagnosis. It takes significant gut damage and time for the specific antibodies to get high enough to be detected. (According to coeliac expert Alessio Fasano).

Having said that the antibodies ‘hang around’ for a while and then decline to normal levels on a gluten free diet. It’s how specialists monitor adherence to gf diet, the numbers go down in the coeliac that’s healing their gut.

Depending on how long your son has been off gluten foods it’s probably still worth testing just in case it shows up on the blood test. Time is of the essence. But if normal result it doesn’t mean it still could not be coeliac.

Hopefully he gets a referral to a specialist such as a gastroenterologist. If he really can’t do a ‘gluten challenge’ because of symptoms (They are gruelling to do.). Then there’s the genetic test that can all but rule coeliac disease out. A specialist/ gastroenterologist would have to refer for this and it’s not in the NICE guidelines for a GP to do. Or it’s available privately in the UK if I’m correct. Gluten doesn’t have to be in the diet.

[Hidden]

Your son is doing all the right things is pursuing medical diagnosis and taking himself to hospital.

All of the symptoms are coeliac, but the swollen glands is not a usual coeliac symptom, but perhaps it's a symptom of generally being very run down (?).

If your son is unwilling/unable to do the gluten challenge, then he will remain without a diagnosis that is definitive (which many on here experience also), but equally if he has coeliac he can't half-a** the gluten avoidance either, and if he is still having significant symptoms, and it is coeliac, then there must be a significant amount of gluten still in his diet. Cutting out the bread/pasta is only one bit of the story, and gluten is pretty much everywhere in many things, from hidden gluten in things like 'starch' as a ingredient, through to cross-contamination in the kitchen with shared space and utensils.

I think the medical route of ruling out anything else serious is important, so he's on the right route for that.

Coeliac/NCGI - it's either do the gluten challenge for 6 weeks and get the diagnosis, or don't do the gluten challenge, assume it is coeliac/NCGI on basis of symptoms, and embrace gluten free properly and see if symptoms abait and health improves.

The blood test is not the definitive diagnosis - it also has to be biopsy of gut. Issue with blood test for coeliac is that it returns a lot of false negatives, and the NCGI won't show up on the blood test.

GPs in the main are still very poor on coeliac, even after diagnosis, so many on here will share you frustration with this also.

[Worksop1]

So despite seeing his GP for nearly 3 years with the same symptoms that have just got worse they failed to spot what the hospital discovered in less than 1 hour, he has testicular cancer which was clearly seen on an xray 9 months ago, wasnt acted on or even mentioned! The Dr at the hospital looked at his records and asked him when does your treatment start...confused he asked what treatment my Gp cant find anything wrong with me? to then be told...well you have testicular cancer and judging on your bloods and lymph nodes its spread to them! and they have known for at least the last 9 months!!