Still feeling rough despite a strict gluten free diet?

Still feeling rough despite a strict gluten free diet?

I'll keep this short and snappy. A re-ocurring problem I had post-gf diet was 'why do I feel so rough when I felt so good initially'. After hounding my GP repeatedly and proving I'd been a good Coeliac (cue blood tests, 2nd endo, camera pill), it appeared that nutritional deficiencies aka Iron, Vitamin D were to blame. Plus problems digesting certain sugars (including those in my prescribed vitamin D tablets!).

I know that many other Coeliacs on forums often feel rough despite being strictly gluten free. Often Drs can't advise on how long it takes to feel better (once stomach heals etc) from years of gluten damage. There's often mixed info online, 1 year - 3 years to feel better? Whilst research on CD has come a long way it can be frustrating and disheartening as a patient if all your hard work doesn't appear to be paying off. So if you are silently worrying why you're not skipping along the gluten free road or your child seems to have dipped since going gluten free do read this article. It's from the Aussie Coeliac Society and is truly the best explanation I have come across. It covers the FODMAP diet, sugars, IBS response time to healing and other great insights.

I hope that sharing it helps you feel better and can lead to some useful discussions when you next have your Coeliac check up. Let me know if it mirrors your experience.

See: Click on June's mag > Why is the gluten free diet not helping me?

coeliacsociety.com.au/ac-ar...

6 Replies

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  • Hi Fiona, I think the problem here could be that gluten free does not mean free of gluten and that small amounts of gluten in codex wheat starch malted cereals and oats even tho' they are classed as gf still contain a small amount of gluten. I nearly abandoned my strict gf diet because I just could not get properly better, ie: irritibality head aches the runs etc so I stopped eating codex and malted pickles etc. And the difference was amazing my IBS also vanished into obscurity. I also suffer from osteopeenia and microscopic colitis, since going completely gf all my iron and mineral levels returned to normal. In the UK we are allowed to eat foods containing up to 200ppm which's a gram per 5Kilo's. Interestingly you post a link from the Australian coeliac society and they have 5ppm as gf and they still have coeliac who are sensitve to this low level. In my opinion as a sensitive coeliac I would recomend that any coeliac try a zero gluten diet to see if they do feel better. I am not saying that coeliac should not eat allowed gluten in codex and malted cereals just be aware of it and may be by avoiding it for a month they would be more aware of the effects on their bodies and its 'our' health that would benefit. And I hope that you feel better on your diet soon.

  • Hi Fiona,

    I went on an practically carb-free diet (basically Atkins phase one) three month ago and it improved my health enormously. I reintroduced cheese after a while and recently yogurt and my situation slowly worsened. I had symptoms of adrenal gland fatigue before my nutrition change and they slowly came back with cheese and yogurt.

    I have now went not only gluten-free, but stopped eating milk-product, so I'm also casein-free and my situation is improving. So if one goes gluten free and it helps, one should consider going the whole nine yards and go casein-free as well: GFCF.

    I'm now on a paleo/panu/primal-style diet and my situation is improving. The only milk-product for me is Ghee, which is free from casein as far as I can see.

    Best,

    Tony

  • Thanks Jerry - you raise a really key point here - in that few things really are 'gluten free' and codex wheat starch can be problematic - especially for newbie Coeliacs. In my case I never touched the stuff, nor did I rush out and get prescription foods or Free From processed foods in supermarkets. I can't really recall what I managed on eating for the first 6 mths. A lot of salad, fruit, meat and veggies I think! Yet I suspect I have a lot of cross contamination issues (especially trying to eat in the work cafeteria so in the end I brought all my own lunches in). Yet I guess it goes to show everyone is different and heals differently. Even now some foods that I used to be able to eat e.g. chilli, cream curries etc are now too harsh for my tum. So I guess everything in moderation. My 2nd endo showed I'd taken 18mths for villi to heal internally despite my bloods for anti-bodies being negative for gluten etc after a month going GF. So I guess as the Dr said it depends from person to person how people react and heal. Which is what can make it all so frustrating - especially when you're being strict.

    I just wish our levels were as low as Oz. As even eating a lot of 20ppm can build up gluten in our systems over time and cause reactions in some Coeliacs.

    Thanks for your comments - it's always great to get input from other members. You've reminded me not to get tempted by all the new shiny Free From foods. Sometimes simple and natural is best. It's nice to hear that everyone has these ups and downs ; )

  • Thanks Tony. I know a lot of Coeliacs find they have problems with soya, sulphites, corn, lactose etc. There doesn't seem to be (on the NHS at least) a standard way of screening Coeliacs for these after diagnosis. So we'll look at doing a blog post on this and invite feedback from other members. It can seem like a minefield. I was tempted to try the FODMAP diet as Oz and Kings College London have done a lot of good research on this which has proven to help in IBS, Colitis and other patients with stomach problems.

    Hope you find ways to vary your diet. I know GF can be hard enough initially let alone avoiding other things. It does make you look differently and wonder how we became so reliant on so much processed food doesn't it?

  • What confused me was that I had a second biopsy which showed that my villi had healed, the only gluten that I consumed was from codex and marmite, marmite is made from spent brewers yeast so is bound to contain traces of gluten. And is not recomended for coeliac in may countries. One of my friends who is a coeliac can eat anything without symptoms so stuck to a wheat and gf diet but was still anaemic and was diagnosed with osteopeenia and osteoporosis aged 32 and when she stopped eating marmite and her anaemia went. This to me proves how insidious gluten is even in small quantities.

    Now lactose this I find interesting because I can drink tea with milk until the cows come home but if I have lashings of cream I get a very upset stomach, I can also eat hard cheeses like cheddar with no problems. I once posted saying this on a US wheatfree site and 2 other coeliac said they were the same. Lactose is a very long chain molecule that is 200x larger than huiman milk so the stomach has to break this molecular chain down before it can be absorbed, goats milk also contains lactose but it's molecules are the same size as human milk so is more easily absorbed, so in my opinion coeliac who have trouble with cows milk should try goats milk and feta (goats cheese) Once you get your diet straight it is well worth the effort and like you said we see processed foods very diferently and thats no bad thing in my book.

  • Very interesting. I've been tested for lactose intolerance and after feeling icky pre CD diagnosis (aka permanent jet lag / nausea feeling), felt fine after. However, I also find years since dx that lactose free milk is better for me in tea and coffee. Or I can tolerate it in Starbucks as skimmed milk. Yet if I eat creamy curries etc I can feel sick as a pig. I've read online that Cheddar and Parmesan have the lowest levels of lactose so maybe this explains this?

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