Not Sure

I have been gluten free for over 2 years, and have stuck to the diet unless it hidden, and yet my bloods still show i eat gluten, if this is the case why am I on this diet?, also i found other conditions the cause villous atrophy, such as Giardiasis, collagenous sprue, refractory celiac disease to name a few , all of these have some or all of the symptoms that I show, but I have not lost any weight even thought is said coeliac disease will make you lose weight, ?

If I asked for another biopsy, would I get one? and if my villi is still damaged then the diet is not working or i have something else, I just want to find out what i have and treat it, so I can eat the right food, I still get most of the symptoms I had before my diagnoses, so that's why I am questioning my diagnoses, any advice or a point in the right research direction would be great, Many Thanks friends xx

14 Replies

  • Hi jill, my first thought is are you eating oats? because not all coeliac can tolerate oats and even if you can tolerate them you should not eat more than 50g in 24 hours so many of us avoid them. The same goes for malted products many of which are below codex like malt vinegar, Branston pickle some malted supermarket breakfast cereals.

    Some coeliac have a reaction to wheat derivatives that will definitely be below codex like maltodextrin, dextrose, caramel colours and even citric acid can be derived from wheat.

    And some people who are not coeliac have an adverse reaction to artificial sugars with aspartame being one that comes up a lot.

    In my opinion a naturally gluten free diet is much healthier and more nutritious than one based on processed and speciality free from foods and that to me is your best option, if your life style permits it.

    But if you want to have another biopsy you have to have a full on gluten diet and go on a gluten challenge.

    I would ask your GP to refer you back to the gastro where you had the first biopsy and talk to them, as they are gut specialist and have seen it all before and then decide if you want to have a formal diagnosis and go on a gluten challenge or want to go on a naturally gluten free diet based on fresh foods.

    Thats my 2p's worth and let us know how you get on as this could really help someone in the future.

  • Hi just to say I don't eat oats and cook all my food from scratch so I know what I am eating

  • Well that rules oats out and good for you so I'd ask to be referred to the Gastro as I don't see why you can't have another biopsy, as most of us have a second biopsy after 12 months to see if our villi has recovered.

  • Hi Jill, I wouldn't worry about other diagnoses as you've kind of answered your own question. The issue seems to be that even though you cook from scratch, your bloods show gluten therefore you are eating gluten. Hence as a coeliac you still have symptoms.

    Jerry already made some good comments about the suspect foods that are below Codex and therefore "legally" gluten free although not really GF as in "none".

    Look again at all your ingredients. It took me a few months to work out that I had bought a different brand of cornflour that must have been contaminated during processing.

    Another one that's easy to overlook is the dreaded glucose syrup, which is likely to be the biggest ingredient of any "gluten free" dessert in restaurants.

    Or it could be trace contamination in nuts, dried fruit etc there are numerous possibilities.

    So although you think the gluten free diet is not working, due to your blood results, that's because as Jerry said you must be sensitive below Codex level and therefore your diet is not actually gluten free enough.

    Good luck with the detective work!

  • Jill I know you cook all your food from scratch but I wondered if you were using any stock cubes as I discovered they contain some nasties. Also I don't know if you are eating any confectionery or chocolate which will probably contain glucose syrup. I hope you manage to sort this out and get some medical advice/help soon as Jerry suggests.

  • Thanks for the replies, but just need to add I read everything that i use even with the lowest dose of gluten and i steer well clear of it,

  • Good advice above though I would add that being coeliac does not necessarily mean that you would lose weight. Both my cousins are coeliac and whilst One did lose a lot of weight before it was diagnosed and under control, the other didn't.

    Whilst all my tests were clear I find that I no longer become anemic or vitamin deficient since I have stopped having gluten

  • Hello,

    Just a long shot but you aren't handling anything like horse (or any dried pet food) are you?

    It can affect gluten levels and there are alternatives.

    Think about amything you can breathe dust from.



  • Just to update, the bloods yesterday cam back as negative for gluten, so will see what next bloods show. but so far a good thing means im doing it right lol x

  • I read an interesting article from Dr.Tom the other day that stated some tea bags contain gluten - it's not the tea but the back and some contained a high dose of gluten, well above the cut off point.

    Moggie x

  • Hi can you put a link up to that please so i can read it, thanks

  • There you go:-

    This is obviously an American article but I am sure it will apply to our tea bags as well and am at a loss as to what to do as I only drink tea, looks like I will be digging out my teapot (plus woolly and going back to loose tea.

    Moggie x

  • That is SO interesting Moggie! I discovered by myself after a few months of being strictly gluten free but still drinking green tea that it caused reactions in me. Good to see it confirmed, even though I don't fully understand what it is in the green tea that is irritating me. I have similarly had to give up coffee to avoid the reactions it too causes in me, and again I don't fully understand what it can be in the coffee (even if I get organic small-farm whole beans and grind them myself in an uncontaminated grinder)... I very much enjoyed both green tea and coffee so it was a real disappointment having to give them both up. Thanks for the share!

  • Your welcome - have you tried Tea Pigs? They are very expensive (£10 for 50) but they come in a silk like bag, have a look on Amazon - or you could just use loose tea and a teapot.

    Moggie x

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