I have been completely gluten free for 2 months now and am now experiencing symptoms I have only had a few times before. Is this normal?

I am wondering if I have symptoms because the gluten trapped in the vilae is starting to move out of my body? What does everyone think? What are your experiences of this? The only other option is that I have been glutened but I don`t think so!

8 Replies

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  • Hi Elspeth, my first thought is do you eat codex wheat, oats or cereals with malt? Because not all coeliac can tolerate codex wheat, low levels of malt or the oat gluten in pure oats.

    The other thing that many coeliac experience in the first few months after diagnosis is lactose intolerance because the enzyme lactase that breaks down lactose is produced at the tip of our villi so if the villi is still recovering it may not be producing lactase or enough lactase. You can buy lactofree milk in most supermarkets and this has been filtered and has lactase added to help our stomachs breakdown lactose.

    lactofree.co.uk/products/?g...

    And I hope that you feel better soon and sort out what's upsetting you.

  • Hi Elspeth,

    I would look for all the sneaky ways gluten gets in first; check your diet...

    Do you cook gluten and GF foods near each other (for other family members)?

    Do you eat GF, such as chips, that may have shared oil with gluten foods?

    Do you eat out in sandwich shops and choose the baked potato option, without informing staff you need it GF?

    Do you share margarine or spreads?

    Do you use the same toaster?

    Once you have cracked finding gluten free foods, I think cross contamination is the next big issue.

    I did become lactose intolerant after coeliac diagnosis, but not until about 18 months in.

    Wishing you well. :)

  • Thanks sassyl and Jerry. I will check into all of these things! I hope I am not lactose intolerant too but I was as a small child so I suppose it is a not too extreme possibility!

    So you definitely dont think it is the gluten leaving my system then?

  • Nope definitely not! Gluten isn't a toxin in that sense. It doesn't get stored by your body. The only thing that could be giving you symptoms is the fact that your gut hasn't healed properly yet or that you're ingesting hidden gluten. I'm 2.5 months in and I get the occasional gnawing epigastric pain/mild nausea a couple of hours after meals which I've put down to the former.

  • So you definitely dont think it is the gluten leaving my system then?

    No, any gluten will have passed out of your system by now. It's a steep learning curve at first but it will become second nature.

    I worry about cross contamination from some supermarket conveyor belts as the dreaded gluten gets everywhere.

    So just stick with it and you'll get there as it's early days and good luck.

  • Thanks I will recheck everything I am eating and make double sure!

  • Keep a food diary and list out what you have eaten and drunk and your state of health. you should start to see patterns forming if it is a particular foodstuff or ingredient. Takes time to do and requires honesty (it is quite amazing in the course of a day what one consumes and tempting not to include items on a "guilt" basis! But you must record everything - by doing this I discovered a tiny amount of gluten in some sweets I was eating that I did not eat a lot/often and for which the apparently random nature of my attacks was driving me bonkers! Until I realised it was them not my other intake).

    You may find that there is another lurking intolerance/allergy. I had similar occasional symptoms and discovered two years after going gluten free that I was allergic to milk.

    Although lactose is a common problem with newly diagnosed coeliacs, some will have milk allergy/intolerance problems that continue and go beyond milk sugars (lactose) to include milk proteins (casein) - elsewhere on the site I have put a link to a Swedish study which showed that 50% of coeliacs showed coeliac-like symptoms when milk was introduced into their lower gut. Early days and limited study, but interesting nonetheless.

    Other common allergens/intolerances could include yeast, soya, fish/seafish. eggs or nuts.

    Keeping a food diary should help and if you are not sure get your doctor to refer you to a dietician and the food diary will speed up the process of establishing the root cause (be it a hidden gluten containing substance, lactose or something else).

  • Thanks meanioni. I will do just that and the next time I am at the dietician she will be able to help if I cant see what the problem might be before then!

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