grommet

It could be gluten intolerance as opposed to celiac disease? At the moment as you know, the gold std for diagnosis of celiac disease is positive biopsy. but if this comes back negative, you are often not diagnosed with coeliac disease. So, what do you have? Far be it from me to put words into the OP's mouth but I think he was saying you would not be...

Another one here - gluten makes me very poorly - not just gastro symptoms. I had negative bloods and negative biopsy. Would I ever develop celiac disease - I don't know. Consultant not prepared to diagnose me with anything so am self diagnosed as gluten intolerant. 3 other members of my family are also ill from gluten so there is something genetic there....

It is crap that we have to eat what is making us ill to get a gold standard diagnosis, but you are setting yourself up for an inconclusive result if you go gluten-free now. Make the best of the time you have left to eat what you want when you want. KFC, Pizzas etc, cos you'll never have 'em again. I had been gluten-free for 2 years (not knowing anything...

Hi Jason, I only started being gluten intolerant in my late thirties/early forties. This was after a miscarriage, an ectopic pregnancy, an op to be sterilised i.e. a series of hospital visits. My brother only started after a bout of glandular fever. My mum started at age 65 - not sure of one particular trigger but she has been ill probably since her forties...

I'm without a diagnosis by the way ( I have had negative bloods (when gluten-free) and negative biopsy(7 weeks eating gluten after 2 years gluten-free). But, I have a terrible reaction (apart from the obivous gastro symptoms) when I eat gluten: joint pain, fatigue, anxiety, palpitations, twitchy legs, night sweats some of this seems to be an autoimmune...

sorry - I didn't mean to get at you personally. I hope it didn't come across like that. I was really trying to understand what a diagnosis (or not) means in the US. I'm sure you are very welcome on this group and will get lots of good advice.

I know that we all want a proper diagnosis so that we can confirm we are not going mad, but surely this is not just about what we call ourselves and whether we can join a forum. Having a Gold diagnosis of Coeliac within the UK means (possibly) follow up appointments with a nutritionist, follow up bone scans, follow-up vitamin injections, other members...

Oh - I agree, that's true. I was partly gluten-free and had negative bloods, I did the gluten challenge and had negative biopsy. I have now been gluten-free for 2 years, and would not do another challenge, so I'll never have another biopsy and will therefore never get a diagnosis. So I will never be diagnosed Coeliac by the gold standard. Gluten intolerant...

Yes - every symptom (apart from the migraines). There is a definite pattern when I've eaten gluten. The first indication that I've eaten gluten is twitchy legs. Then the burping then the feeling sick, then night sweats that night, sicknss and D the following morning, (when I can wake-up/get up because of the tiredness), then the brain fog and aching joints...

This used to confuse me - the "no autoimmune response ". I'm gluten intolerant (negative biopsy). I have no other autoimmune diseases causing a leaky gut, but I definitely have what I would call an autoimmune response. e.g. twitchy legs, nights sweats, brain fog, aching joints, depression, extreme fatigue, brain fog, sometimes migraine. I also have malabsorption...

You may want to have a look at this Open Original Shared Link. It's a link to a write up on SIBO and a few messages from a UK based Coeliac forum. Best Wishes in you endeavour to find out what is causing your problems.

Jenny you raise some interesting points. I don't have answers by the way - just further musings I've not been diagnosed with celiac disease (neg bloods neg biopsy). My Gastro did not recognise GI so I diagnosed it myself. wish I'd just gone gluten-free straightaway when i suspected it was that that was causing the problem. Any ho hum... However...

I think it is always surprising to people that even some symptoms they did not suspect were to do with gluten - go away when gluten-free. I'm glad the secondary issues are getting better. I could cope with eating gluten if its was only the sickness and D. It's everything else i find difficult, seriously affecting my quality of life, and ability to work...

Hi Trillian, I agree with Ravenwoodglass and lonewolf that I wouldn't be too quick to dismiss the fact that you cannot have malabsorption symptoms with gluten intolerance. I too am self diagnosed after having neg bloods and biopsy i.e. I respond when to the diet I've suffered joint pain, migraines, miscarriages, brain fog, depression for many years...

What - no comments? Perhaps you couldn't be bothered wading through the whole email. I particularly thought that the comment re "pathological or functional symptoms" is extremely interesting. Does eating gluten *just* cause Sickness and D, or does it cause problems to the immune system from a leaky gut? I think the distinction on this will be just...