I have suspected I have coeliac disease for many years, but I have been tested several times and am always negative. It was in one of the later tests that I discovered I had partial IgA deficiency which meant the previous testing was suspect. After a long, hard fight I succeeded in getting IgG testing, but that was also negative so I gave up. That was about 4 years ago.
Since then my health has steadily deteriorated, with more and more aches and pains, extreme tiredness, apathy and bad depression. Nowadays if I take any drug it is almost a given I will have an allergic (skin) reaction to it. It always feels as if I have an underlying cause that connects everything together, but that may just be wishful thinking on my part!
Recently, after yet another drug sensitivity reaction, I was given steroids - the first time I've ever taken them - and found them wonderful. All my aches and pains went away, even longstanding 3 year old tendonitis. More importantly I felt wonderfully upbeat, and realised just how low I'd sunk over the years. My normal state is barely functioning; I survive rather than feel alive. This made me reconsider Coeliac Disease again.
I am now considering one of three options:
1. Go to the doctor and ask for another IgG test, just in case anything has changed. If this is negative once more, push for a gut biopsy. Or...
2. Just go gluten-free and see if things improve. If they do, stay gluten-free forever and accept that I probably have Non-coeliac Gluten Sensitivity rather than Coeliac Disease, so I would never be diagnosed anyway!
3. Get the HLADQ2/8 gene testing and if I have the incriminating gene accept that I have an issue with wheat and go gluten-free forever.
My quandary is this. I don't love doctors and I don't like invasive procedures. I have bad acid reflux and oesophagitis from years of gut problems/IBS, so my oesophagus is quite badly damaged. I am plain frightened of the idea of a biopsy, so my question is this - is it worth the effort?
I would prefer to have a diagnosis, because I know from bitter experience that doctors will not take anything you say seriously unless you have a formal diagnosis, also I live on a very low income and cannot really afford a gluten-free diet so prescriptions would help, but that said, is pushing for a biopsy just a foolish way of giving myself more unnecessary pain? How bad is a biopsy? I would really love to hear from anyone who has had one regarding just how gruelling they are, and if they personally found it worth it. Also I would like any advice on whether I can get gene testing on the NHS, particularly in light of the fact that my oesophagitis is a genuine issue with sticking things down my throat. Thanks!
P.S. If gene testing is not available on the NHS, any advice on a reliable place to get it would be most appreciated. I am so sick of this I am prepared to spend my scant savings on a test just to rule this out once and for all!
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My first endoscopy was awful. It was performed by a consultant and afterwards I vowed “never again”. 6 months later I was due my next one (to determine if my GF diet had improved my deflated villi) and requested they knock me out. The prep nurse and I got talking and I explained my rationale. She proceeded to persuade me to try again. The person who was due to do the endoscopy was a senior nurse known for being ‘gentle’ and suggested I ask for at least 6 or so sprays of the local anaesthetic for my throat. I decided to reverse my decision did as she suggested. Bingo! Hardly felt a thing. So if you do decide to go that route do research who would be doing it and try to get a feel for whether the spray or semi knock out is the best route (by the way if you get knocked out you can’t drive home).
Many thanks, Peter. You're experience certainly hasn't reassured me! But I think I would ask to be knocked out anyway, just as a matter of course. I don't drive so that's not a problem. I have a phobia about being sick so I'm thinking stuff shoved up/ down my throat is not a good match for my psyche!
Sounds like you’re having an awful time of it, with one thing or another. I have Coeliac Disease and was diagnosed 10yrs ago, it defo helped with some, but not all of my issues. In my case a lot of issues were due to the undiagnosed Coeliac and some were down to my age. I was 49 at that time. Perhaps you are intolerant to gluten and therefore would never find out anyway, as there is no testing for that. I’d advise you just to cut it out and see if that helps. It needn’t be expensive as a lot of “normal”food is naturally GF. I bake a lot of cakes, biccies etc so that to keeps the cost down x
Thanks Annenic. Ironically I normally do eat a rather low gluten diet, only having the odd bit of bread, but I'd been experimenting with different eating protocols and had ate a ton of white flour recently. My gut REALLY didn't like that, with constant and severe bloating (so bad it was pushing my food back up my gullet), aggravated constipation, Sphincter of Oddi problems - I could go on. I didn't eat wheat yesterday, and nothing so far today, and not a bit of bother with any of it - and it had been like that all week. The picture isn't looking good for wheat. It's just so frustrating to not know for SURE.
The only way to know for sure is to have the biopsy, for that though you’ll need to eat a good portion of gluten every day for six weeks to get a diagnosis of Coeliac Disease. It on the other hand it’s a gluten intolerance then you’ll be back to square one as there is as yet no test. It’s now down to you I’m afraid xx
Yes, it was ever thus. I would say I'm just as bad as doctors, wanting my proof, but truthfully I think it's them that make us like that - because we all know how we'll be treated if we can't trot out the right 'credentials' to prove our suffering!
As Coeliac Disease is an auto immune disease, we are destroying our gut with even the slightest crumb of gluten and we need a hard definitive diagnosis so we never ever touch the stuff again. Whereas intolerance although just as awful, just as painful, just as debilitating won’t cause any internal damage in the long or short term. It’s this that the docs need the diagnosis for as Coeliacs should be regularly monitored and medicated to protect their internal selves. I have a friend who is obviously wheat intolerant but she has no desire to undergo a scope for definitive proof one way or the other, she follows the same diet as I do and in the 7wks she has been doing it, she has had no problems at all. The relief is all she needs. She rarely if ever buys GF food from free from aisles, she prefers t make and bake her own x
You're right, of course. I think it's that that's in the back of my mind. If I have an actual health condition which forbids something then I can stop it, but if there is the slightest sliver of doubt then I'll use it to wriggle out of it! I think we all feel better with a firm diagnosis.
Just go with your instincts, if you feel like you are healthier without gluten then give it a try. Intolerance is nasty in the same way being Coeliac (before diagnosis) is. Labels are for jars and tins, so if you know gluten makes you ill then leave it out of your diet for a month, go back on it after that and you’ll know for sure x
You're right once again. I am currently thinking that all options considered, just testing it myself is the path of least resistance, and if I get a very clear sign that wheat is my problem area then I can always go to the doctor afterwards and ask for official testing if I feel I need that confirmation/reassurance. Well, first step is to stop buying wheat products with a view to cleaning them out completely. I hate doing this but at least it's only one thing I'm restricting this time! Thanks for all your help - most appreciated. X
Trouble there is you need to have been eating gluten for 6wks on a daily basis to get a true result. If you come off it, prove to yourself thats what it is, then have to go back on it, your symptoms would be worse. Id say it's best you're tested now if you are going to ask later. At least you'd know and get the proper mess to aid your recovery xx
Thanks Annenic, but I'll just have to suck it up - literally as well as metaphorically! I have gone gluten-free in the past, and I do always feel better for it. My gluten sensitivity, if I have a true one, is a slow, toxic kind of thing. Of course, this time it COULD be worse, but like I say, I'll just have to suck that up. I really don't want to take doctors on at present, and definitely not without some concrete proof that I have an issue, so I'm just going to have to make the sacrifice and take the risk!
Sorry, this is a really long answer! Personally I would go for option 2. After blood tests and a biopsy (which was very unpleasant) I was told that I have Non-Coeliac Gluten Sensitivity, but many doctors don't even believe such a condition exists so it seemed a bit pointless. I was very lucky in that the consultant who diagnosed me was also prepared to do the genetic tests on the NHS. I tested positive for 1 of the 2 genes which at least partially validated what I'd been saying all along, as it can be difficult to get doctors to take you seriously if you're NOT coeliac.
But really, none of that makes a difference because being gluten free simply makes me feel better. You say you can't afford a gluten free diet but I buy very little of the commercial gluten free stuff as most of it tastes awful and, as you say, is too expensive.
My diet consists of freshly-prepared healthy meals with very little processed food, in fact it has made me a better cook. Chicken, fish, meat with vegetables and potatoes, rice or quinoa. Most of the gluten free pasta is not to my taste but I like Morrisons red lentil pasta. I rarely have a bread substitute as most are awful, in my opinion. Lunches are usually a baked potato or - if I'm a bit more organised - I make a batch of quinoa which will last me 2/3 days & use that as a base. I think cold gluten free pasta is also awful, though that might depend on the brand.
If I have a bit more time, I make my own cakes/cookies and occasionally bread. There are loads of recipes out there! It's daunting to start with but not difficult once you get the hang of it.
With hindsight, would I go through all the tests again? Probably not.
Thanks Gf! I do wonder though if you would feel the same about your testing if you HAD been diagnosed with Coeliac Disease? Having done it all only to get a NCGS diagnosis I imagine it did seem pointless. On the other hand, doesn't the testing seem really archaic (and more than a little barbaric!)? I think it's in Gluten Attack by Prof Sanders where he points out that doctors take IBS as a legitimate diagnosis with zero testing - it's all just the patient's symptoms, yet that same patient MUST be subjected to gut biopsies and blood tests if they have a problem with wheat or they are not believed. And I'm pretty sure there are lots of poor people out there who get zero diagnosis if they have negative blood test results. After all I got that, despite having strong markers like IgA deficiency and IBS, plus a serious neurological condition. Medicine is a very unscientific science!
It could be worth looking into other auto-immune conditions as well - I find a lot of the symptoms can be quite similar (thyroid for example). Many find gluten can be a trigger in other auto-immune disease, not just coeliac disease, so it could be worth trying a period without it, just to see if your symptoms improve (if you decide not to go through with the biopsy).
We try not to buy too much from the gluten free section, and instead try to go for products that are naturally gluten free (like extra vegetables). It helps to keep the costs down.
Hi Cooper. I did have various autoimmune tests some years back and I have my thyroid tested periodically, but I am horribly normal! It's odd, despite getting a LOT of 'allergic' reactions, and always getting Drug Induced Lupus if I am on anti-convulsant medication, I never feel that I have another auto-immune condition, and I've looked into a LOT of them, desperately trying to find something that fits, but they never do! I DO feel though that my body has autoimmune style reactions - I just don't know what triggers them - hence me suspecting gluten all these years.
There are quite a lot of foods that can trigger auto-immune disease, so it could be worth you trying a spell on an auto-immune paleo diet (or whole 30, which is similar, but a little easier) - they're really just another name for an intollerance diet, where you cut out common trigger foods, then reintroduce them slowly at the end. It will also give your gut a chance to heal. It may not be auto-immune disease, but diet it always a good place to start!
Thanks for that, Cooper, I wasn't aware that there WAS a paleo autoimmune diet! I just thought paleo was paleo. Should I look under autoimmune paleo diet or is it just the ordinary paleo diet which some folks use for autoimmune conditions?
It's specifically auto-immune paleo, you'll find a lot of bloggers use the acronym AIP instead. Whole 30 has many recipes that also work for AIP, or can be adapted. Pinterest is really handy for this!
I didn't know about AIP until it was recommended to me either. I would never have actually gone paleo as a lifestyle, but can handle it for a couple of months, if it means feeling better. It is really restrictive though!
Thanks both! I will have a look at the paleo world and see if I think I can tolerate it. It's that policing problem again. I wish eating wasn't so complicated. Or maybe it's eating in 2018 that's complicated!
Replying quickly as on phone and hate typing on it ;). I also never showed coeliac on bloods. Also iga normal so that wasn’t the reason. Celiac uk said when I rang their helpline it’s not unusual. Weird.
However biopsy showed definitely coeliac with extensive damage. 2 years later and neurotically GF it’s still recovering but getting there.
So for me the biopsy was a definite necessity. I was fine with it but asked for loads of sedative so can’t remember it tbh 😄. I just know I wouldn’t have had the motivation to be as careful as I am (never eat out or at friends houses - just eat at home before I go - it’s dull as hell, but safe) without the biopsy.
Really good luck - you sound like you’ve been through the mill :(.
Thanks, Tilly, that's very interesting. Can I ask why you pursued (or your doctor pursued) a biopsy when you were getting negative blood tests? What was it made you/the doctor feel it was still coeliac when the blood tests clearly said it wasn't?
I think I was very lucky. A really decent gp referred me to hospital gastro consultant as I was fainting and losing sensation in fingertips so quite distressed. By coincidence he had coeliac child and ncgs wife. He was convinced I would come back non coeliac g sensitive and was very surprised by results. As was i to be honest by that point. But as I say weirdly coeliac uk said they regularly hear of it X
I had a read through your posts and your history was very illuminating. Fainting and loss of sensation is not really what first springs to mind for coeliac disease so your GP really was diligent! The doc who did my testing was the opposite, with 'scepticism' (a polite word for it) dripping off him. I literally had to have a fight to get an IgG test when I discovered my IgA was low. Just my luck that it turned out negative too. I sometimes think I must be bonkers to actually WANT a positive diagnosis of coeliac, but it would be such a relief if I had a reason for all my complaints and, much more importantly, a way to fix them.
Sometimes if one doctor is not reasonable it's best to find another and if all else fails, then we need to become our own investigator and start treating ourselves. Have you eliminated gluten from your diet? Have you eliminated all topicals that have gluten in them? Also, do you have any Holistic or Homeopathic doctors in your area? They are more often than not far superior to the Allopathic doctors of today. These would all be steps in the right direction when taking your health into your own hands.
Thanks, Catryna, I'm still sitting on the fence about exactly what to do, but at the moment I'm thinking I'll ask the doc to redo blood tests, just to see how things stand and then take it from there. Of course, I may change my mind 14 times or more between now and seeing him next Monday!
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A couple of questions for people who have been gluten free for some years...
Trying to get back on the wagon..
Non-gut related symptoms - could it still be CD?
