Duration/quantity of gluten for tests

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Hello again.

I recently had a negative result from my duodenal biopsies. This doesn't surprise me as I suspect that I don't have coeliac disease. However, somebody has suggested to me that I may have had a false negative result due to having followed a gluten-free diet for over 30 years following diagnosis by doctors of dubious competence. In preparation for the duodenal biopsies I ate gluten for seven weeks (the recommendation is six weeks). The quantity of gluten I ate per day was considerably in excess of the recommended minimum of one slice of bread or a small portion of pasta (e.g. in a typical day Weetabix for breakfast, a bread roll for lunch, pasta for dinner, or wheat bran for breakfast, a pasta salad for lunch, and a pizza for dinner, plus quite a lot of cakes, doughnuts, buns, apple pies, pancakes, etc). The suggestion made to me was that because I hadn't eaten gluten for over 30 years all of this gluten would not have done me any damage. I find this pretty hard to believe, as people who follow a gluten-free diet for many years do typically become unwell when they eat gluten, so I don't think that not eating gluten for a long time provides any sort of long-term immunity from the effects of gluten. However, I thought I'd check it out as the person seemed to think that it was likely that having previously been on a gluten-free diet would cause a delay in the onset of damage.

Thanks for any advice.

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  • Posted

    What I don't understand is why why if you followed a gluten free diet for 30 years  ( assuming it was completely gluten free) any tests would need to be done to see if you are a coeliac? Surely if you are happy being completely gluten free you shouldn't be getting any coeliac problems, and the cause of your problems is something else?

    i suspected that I was not a coeliac so it all came as a bit of a surprise.

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    • Posted

      Hi again, Kim!

      Yes, my diet for nearly 31 years now was as completely gluten free as humanly possible. No doubt I had a crumb of bread or a dusting of flour here or there, as would happen in the course of three decades, but that would have been all.

      The reason that tests need to be done is that my original diagnosis was on the basis of, "Well, it looks like coeliac to me, so if he gets better not eating gluten let's assume that's what it is, and let's not bother with the biopsies". 31 years ago there was no internet, little knowledge about coeliac disease anyway, and parents were deferential to the medical profession, so didn't think to say, "No way, my son deserves a proper diagnosis because you don't know what problems this is going to cause in the future"! So, having been increasingly unwell for over five years now, I've seen a succession of GPs, saying, "Look, the coeliac diagnosis was only ever on the basis of I seemed better not eating gluten, now I'm ill again despite the gluten-free diet, I reckon you may have got it wrong". For five years I was fobbed off with, "Oh, don't worry about that, it's IBS, take some peppermint oil". Eventually I've seen a GP and a consultant who are shocked at the arogance of a paediatrician putting a toddler on a gluten-free diet for life based on what was essentially a hunch. The suspicion now is that I may actually have been suffering from something else all my life and that the flimsy coeliac diagnosis may have confused everyone all these years. So they need to definitively rule out (or rule in) coeliac before they can work out what actually is wrong with me. I have a friend who is a doctor who said that if the doctor who diagnosed me is still practising I should have him investigated by the GMC as he possibly shouldn't be allowed to practise! (He isn't still practising, as he's dead.)

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  • Posted

    31 years ago, I'm not sure what doctors/science even knew about CD.  It probably wasn't stressed/taught well in med school. From what I've been reading (not just families but medical professionals, too) there are many stories, but most seem to be just the opposite - missed diagnoses, or more likely parents were told their child had CD and then was "cured".

    In the latter case, the child went back on gluten and according to the head of the Columbia University center for CD, he sees them later in life when they have cancer somewhere in the digestive system or additional autoimmune problems.  So, if there was an abundance of caution in your case, maybe it's not so bad...?

    What are your own inclinations?  Do you think you'll continue with gluten in your diet now?  Do you feel any differently when you do eat it?  I would think that you could conclusively rule out CD if nearly 2 months of regularly ingesting gluten has not caused your body to attack itself in a way that shows up on a blood test and/or under a microscope.  But, I'm not a doctor... What other tests have you had and do you have any idea what could be the cause of feeling unwell for so long? Has anything else been ruled out?  It must be strange to have this diagnosis "taken away" - I'm sure it's become a part of your identity.

    I wonder if you are allergic to wheat?  It's also possible you had a wheat allergy or intolerance/sensitivity and outgrew that.  It could explain why you were fine when gluten was removed as a child, but not why you don't feel well now. I wish you luck as you go through the process of trying to find the cause and cure for your issues!

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    • Posted

      Hi, and thanks for your reply.

      Of course, it would have been a lot worse if I had ended up with some kind of cancer, that goes without saying! On the other hand, the problem with the coeliac diagnosis, if false, is that any other gastrointestinal problems I have had have been put down to coeliac disease, including suggestions that I have not followed the diet correctly.

      Additionally, there are problems arising from misunderstanding, even by close family members. For example, one person was convinced that one piece of evidence for my having coeliac disease was that as a child I had an allergic reaction that seemed to be caused by coming into skin contact with wheat. Of course, coeliac reactions are completely different to wheat allergy reactions (at least as manifested on the skin, e.g. swelling of lips), and are triggered by ingestion, not skin contact. In fact, this incident bolsters the theory that what I actually had was a wheat allergy which I've subsequently grown out of (I must have grown out of it or I'd be dead by now!). I don't actually think the doctor I saw all those years ago was very bright about this, because years later I said to my parents, wouldn't it have made more sense to reintroduce gluten in the form of rye and barley in order to test whether it was a true gluten intolerance rather than a more general allergy to wheat (rye and barley allergies seem to be much less common, so isolating wheat would have made sense).

      As for continuing with gluten, I'll wait and see what I'm advised by the consultant. If he recommends continuing with gluten I am happy to do so. Unlike a lot of other people with negative results I didn't notice any deterioration when the gluten was reintroduced. In general, I don't feel well, but I would say that if anything I felt better during the gluten trial, which I would put down to the fact that although gluten itself doesn't have any health benefits that I know of I would guess that the sort of things I was eating would be digested quite differently (e.g. starting the day with whole grain wheat rather than maize).

      Other tests have included blood tests for all sorts of things (liver, iron, etc, all normal), stool sample analysis for calprotectin (raised once, normal once, raised result probably the result of rectal bleeding caused by a polyp, now removed), OGD, colonoscopy, examination of mouth, eyes, abdomen, and anus/rectum. None of these have shown any abnormality at all. In fact, I'm told that in terms of blood and every imaginable physical examination (manually or with endoscopes) I am positively a picture of health, so why I have these problems remains a mystery. One explanation that has been suggested is simply stress, though I don't know whether stress would cause these symptoms in the absense of any physical evidence.

      You are right that it is very strange to think about eating gluten when for my entire life that I can remember eating gluten has been something that I have believed would make me ill. When I was told I had to eat gluten for what was initially supposed to be six weeks I actually put it off for a couple of days (so was grateful for the extra week at the end to make sure the test was as conclusive as possible). I was mainly worried about other people's reactions, so the first time I did it I went to McDonald's alone to try a hamburger! Then I had to break the news to people one by one that they would see me eating gluten for the first time in over 30 years and not to be alarmed, it was something I had to do for medical reasons. One person who had me round for dinner during that period actually refused to serve anything with gluten, even though I'd told her I had to eat it in order for the test to work properly. It was really very strange. I found myself going into the local bakery to buy lovely stone-baked rolls, thinking, somebody is going to tell me I'm not allowed to eat it!

      Thanks again for your thoughtful and helpful reply.

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    • Posted

      I think it's fascinating!  I don't "know" anyone who has had this experience, just the reverse. I'd think I'd be the proverbial kid in a candy shoppe entering that bakery and I can imagine how you'd almost feel guilty around others.

      When you're on the other side of this - CD or not - you should write an article about your experience!  Perhaps your gluten-denying friend should, too. smile

      Yes, you probably should have been given barley for gluten (is there anything that allows rye ingestion without wheat for children?). My wheat-allergic friend was considering that to see if she has CD, but she's reluctant and hasn't tried it yet.  As for your stress, that sounds more like IBS...which is a fairly useless diagnosis as there's no real treatment, cure, etc. for it.  Except to not feel stress and GL to all of us with that!  

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    • Posted

      The only foods I have ever come across made with rye are bread, cakes, and żur, though I have never seen that latter outside Poland.
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