My coeliac tests were negative. The consultant told me at my only appointment with her that if that were the case she would not see me again, even for a follow-up appointment. She had been pretty dismissive anyway because I wasn't "thin enough" or "ill enough", and she clearly doesn't believe there is such a thing as "gluten sensitive". So I ended up without any kind of formal diagnosis.
So to those who've had to self-diagnose - do you still ask for the gluten free option in restaurants? We went out for a meal yesterday for the first time since I got my results. The restaurant could provide gf food on request, and chips cooked in a separate fryer. But I didn't request a gf meal because it seemed like a lot of trouble for them to go to for someone who hasn't been diagnosed with anything. I limited my choice to what I hoped would be pretty much gf anyway but (yes, you've guessed it!) I've had problems ever since.
So, how do others handle these kind of situations?
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gfmum1
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Before people dive in with answers - can I ask what tests they did on you and if they explored those for false negatives:
"If the anti-TTG IgA test result is negative, then it is most likely that you do not have coeliac disease. However, your anti-TTG IgA concentrations may be very low or undetectable if you have been avoiding wheat, rye, and barley for a period of time or if you are one of the small percentage of patients with coeliac disease who are also deficient in IgA. This may lead to a false negative result and may prompt your doctor to perform additional testing.
If the anti-EMA IgA is positive but the anti-TTG IgA autoantibody is negative, then it is still possible you may have coeliac disease. Hence if the blood test results are equivocal (uncertain), your doctor may consider an intestinal biopsy to confirm or rule out coeliac disease. "
Thanks for the quick reply. I know this sounds stupid but I don't know exactly what blood tests were done other than full blood count & cholesterol (I hadn't had either done for a long while so my GP decided to do those too). I was told my coeliac test was negative but I had been back on gluten for only about 3 weeks then, after having been gluten free for about 4 months. I had no further blood tests done (so presumably no tests for false negatives) but because of my symptoms my GP referred me to the hospital anyway. I continued eating a normal diet until I had intestinal biopsies done 2 months later. The biopsies were normal.
Hi gfmum1, Fiona probably is the expert here regarding gluten sensitivity. There are various pieces of information on the Web that advises that there is such a thing as gluten sensitivity, although it doesn't appear to be related to coeliac disease, it does appear that gluten causes such a problem to those who suffer with it, that their health only improves with the avoidance of all gluten. According to many accounts there currently are no tests for gluten sensitivity.
If you are indeed found not to currently have coeliac disease but do have similar problems then you may well be interested in an account written in brief, by the School of Medicine at the University of Maryland:
Gluten sensitivity, gluten intollerance, gluten allergy and Celiac Disease are all related, but not the same thing. My specialist explained to me that it all begins with the genetic markers. If you have them or one of them, you are physically pre-disposed to develop problems with gluten. That doesn't mean you will definitely, but you are amongst the 40% of the population who could develop problems. It could manifest as an allergy, like my sister has. She gets post nastal drip, coughs, sore throat, eyes get puffy etc. She is also gluten sensitive: she can eat it in small amounts, but if she eats too much she has a nasty reaction. My father was diagnosed as gluten intolerant. It impacted his digestive system in the nasty way that only gluten can. For some people the gluten attacks their skin and results in a specific disease called DH for short. For others, it attacks their digestive system and causes Celiac Disease. Like cousins, they are all related and come from the same source, they just manifest in different ways.
There are homeopathic blood tests that do identify gluten intolerance. I have declined the gluten challenge because of the terrible pain and suffering that gluten causes me. I've been gluten free for more than 5 years. I have had the DNA testing done by the specialist and I do have the genetic predisposition for gluten issues. I have also had the homeopathic testing done and have been diagnosed Gluten Intollerant. We also have our family history. So, I am definitely gluten intolerant and probably have Celiac Disease. I will never know and I don't care. I also have IBS which also perculdes eating gluten. For me, the bottom line is that I eat gluten free and will for the rest of my life.
When I go into a restaurant I tell them I will be eating gluten free and ask what they can recommend. Sometimes I have to use the term gluten allergy, which is incorrect, but understood by staff. Sometimes they ask if I have Celiac Disease and I just say yes...it's easier. They get the gluten free message and I have a better chance of eating safely. I'm not going to split hairs when it comes to my health and safety. I will use whatever gets the message across to the restaurant staff in language that meets their needs so they can do their job. They don't care about the details.
Hi gfmum1. It is unlikely (but possible) that you are a coeliac given what you have said - the tests are fallible especially if you have self-diagnosed and been off gluten for a while, but most likely you are not coeliac.
Does not sound like a gluten allergy either - key indicators would be tingling/swollen lips/tongue.
More likely that you suffer from a gluten intolerance. The problem with this is that medical profession is divided on intolerances. Those who steadfastly refuse to believe in them and others who work with sufferers who can point to evidence in the field. I, myself am a coeliac but have a very strong intolerance to milk (gives me more acute symptoms than coeliac). But many in the medical profession refuse to acknowledge intolerances, believing them to be psychosomatic.
My view is that more research is required. I'm in the process of setting up a charity (Think Free) think-free.info to support sufferers of food-related illnesses and this is an area that we will be endeavouring to explore. Early days.
In the meantime I would give three pieces of advice:
1) if you find that cutting out gluten makes you feel better then adopt a coeliac style diet. The thing about intolerances is that they can improve if you are on an exclusion diet (but will come back again if you eat lots more of the offending substance)
2) If you are not satisfied with the diagnosis, seek a second opinion
In my opinion, if you feel that you are gluten sensitive or coeliac then you should have the gluten free meal regardless.
My consultant said getting the diagnosis is a minefield as there are different types of gluten and we can be affected by some more than others..I've not read anything like that anywhere but I think it makes sense.
You know your body and if something isn't right then keep pushing that said, for my blood test I wad told to 'glut' myself on shreddies or shredded wheat for a week before the blood test.
There are different types of gluten as gluten is a generic term for certain proteins found in grains - each grain has a different type of gluten. Wheat has gliadin and it is this to which most coeliacs are sensitive, but coeliacs also usually have problems with Hordein (Barley) Secalin (Rye) and some to Avenin (Oats).
Rice, buckwheat and corn also have glutens in them, but tend to cause less issues for coeliacs (although there is some evidence that corn can cause inflammation of the gut as well in coeliacs).
thanks for info, never seen it explained clearly like this before. Have introduced oats last couple months, seem ok better when use soya milk.
If it make you feel bad in any way then don't eat it and i would say that if you really do want a doctor to say that they believe this is what is wrong with you and it's a thing of wanting it on you're medical records then go and see another doctor .
Don't let one person stop you getting to the bottom of you're problems.
I was self diagnosed for 5 years as intolerant till I became more ill and decided it was time to check it out to find I have always been allergic and it had been building up,but I found out what was wrong before some thing nasty happened to me.
I'm someone else whose blood test was negative and I would definitely choose the gluten-free meal, mainly because I would feel tired and ill for four days or so if I didn't.
Like you, I'd been off gluten for some months before going back onto it for a fortnight before the test and have never quite trusted the result. I went back to eating gluten afterwards, thinking that I must be OK to do so, but after a few months felt so rough that I gave it up totally and have been feeling better and better ever since, though these days I seem to react to the slightest cross-contamination.
I totally understand the desire not to make a fuss in restaurants. I was like this but seem to have stopped being But you do feel like a fraud. Like you, I'm not thin enough (though my weight's been coming off since I went gluten free) or ill enough (people kept saying in a baffled way: "But you look OK?"). But gluten just turned me into a zombie with fatigue and brain fog.
I'd really like some kind of official diagnosis. I tend to tell people I'm gluten intolerant, or that I have a "problem with wheat" (and pray they don't feed me barley), but all I know is that I have a reaction if I eat this stuff and keeping away from it makes me feel like a human being again. This becomes clearer and clearer as time passes. I suspect that a few months further down the line you won't be querying whether you should take the gluten-free option
The gastro specialist that diagnosed me was very good and he put it simply: "you eat gluten, you get ill; you stop, you get better - its obvious, isn't it?" - I had refused to have an endoscopy on health grounds as the gluten challenge would have made me too ill (I'm very sensitive and my GP agreed). So went gluten free in 2003.
Never looked back.
As for restaurants, I don't have any qualms now about asking and certain chains like Wagamamas and Zizzi have allergy menus, so you don't have to look awkward.
When I do go into restaurants, the easiest thing to say is that you are allergic to gluten rather than trying to explain what coeliac disease means. Although technically incorrect, most waiting staff seem to get it and take it more seriously if you do.
Like you I was told the same that I was not ceoliac, but sensitive to wheat rye barley and oats.. the oats since childhood. I felt I was dismissed told to avoid the above and that was it.. For 2 and half year I have continued to Gluten free diet and have not looked back ... I feel healthy no uneccessary hospital admissions, no pain relief.
I too am self diognosed. I have been on & off GFD for over 30 yrs. My hospital tests were negetive. The blood test for CD is different to the gluten sensitivity blood test ....they do not do the right test in this country so it is inconclusive. I allowed myself to be influensed by medical Drs to eat gluten & have ended up with heart disease plus all sorts of other health problems. Dr Tom O Br'yan has most of the answers he is so inspirational thedr.com this is his site
You have to do the diet 100% they are lots of other factors you need to be aware of..ie malabsorbtion ...a big problem, it's all about inflammation so stop putting fuel on the fire ...heal the gut ...etc;etc;etc;. Self awareness, the right advise & the quality of your life will improve
Bless you. It can make you feel very self-conscious being gf when out and about.
In the end, diagnosis or no diagnosis, we all *choose* to be gf, either because eating gluten makes us feel unwell or because we know it will make us unwell in the long run even if we feel fine.
I haven't been diagnosed with shellfish allergy, but a couple of years ago I put two and two together and realised that shellfish made my face swell and itch, so even if it makes me feel like a pain in the @rse, I still ask if the fish pie has prawns and if someone is kind enough to offer to cook me dinner I tell them what I can't eat.
It seems like there's a trend for being critical of people - especially women - who choose to follow a diet for their own reasons. No matter what your reasons, at some stage someone will think you're being faddy, weight-conscious or attention-seeking. I think it's one of those things you just have to take on the chin.
Whatever 'trouble' it is to ensure your meal is gf, it is less trouble than you will have if you eat gluten. You may just have to accept that you are worth it, no matter what other people think.
I am a self diagnose after more than 40 years of suffering from gluten intolerance .
My daughter was diagnosed at 2 1/2. And the consultant explained to me it was a genetic.
Even the fact my test were negatives I now completely stop gluten and feel so much better for it . When I do eat out I always make sure the people are aware of my daughter and I condition . Thanks God more and more places adapt to the growing problem . But in any case I always travel with something to eat in my bag in case.
If being GF keeps you well stick to it --as I have said before no-one can read your medical records so they do not know if you are GF by choice or by poor body design, so tell them you are COELIAC, it is so much easier than trying to explain that you may be "just" sensitive---people do NOT know how awful gluten is for us; so go in all guns blazing . It is your body, do what is best for you and "BUBBLES" (insert own rude word!!!!) to the rest. ----the only problem you will have is that you cannot get prescription G F goods, but there is nothing on prescription which you cannot buy in the shops now - but the cost is a bit unsettling, many of us choose not to have prescription stuff (as it can be quite vile), anyway.
Give yourself the permission to be what you need to be.
Thanks so much everyone for taking the time & trouble to help me out. I think Freelancer sums up my feelings better than I could, but you've all made so many good points that I can't possibly answer them all. You've given me a lot to think about, and in particular you've made me realise that I have to stop being too self-conscious to ask for gf when I'm eating out. As I'm still not back to normal after Sunday I probably would have reached that conclusion eventually!
Although I'd really like a proper diagnosis I can't see me getting anywhere with that so I'd rather spend my time learning to bake gf cakes
Thanks again, everyone, you really have helped me a huge amount.
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But you do feel like a fraud. Like you, I'm not thin enough (though my weight's been coming off since I went gluten free) or ill enough (people kept saying in a baffled way: "But you look OK?"). But gluten just turned me into a zombie with fatigue and brain fog. 
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