Do any members deliberately eat gluten?

[FionaGFG]

We all know that having Coeliac Disease means we have to strictly avoid gluten in foods and drinks, over the counter medicines etc. Yet it can be tough for Coeliacs (e.g. at school, university, those who travel a lot), to comply with a strict gf diet due to the peer pressure around food and socialising.

So if you're happy to share your experiences, tell us what and when you eat gluten and we'll see if we can share some tips on how to keep you away from the tempting gluten. Do you find it difficult at work events and just eat what you're given and suffer the consequences? Do you think a pint of beer now and again is worth some mild stomach upset and foggy headedness in return for the taste? Or were you diagnosed later in life and just find it too hard to read the labels, too expensive to shop gf and just prefer to muddle on as you were? If you weren't a 'typical' Coeliac before diagnosis (i.e before diagnosis) do you find it hard as you don't get any obvious side effects from ingesting gluten ?

Do you think more support is needed for Coeliacs / parents at diagnosis e.g. diet planners, counselling, positive role models, Coeliac buddies to help you make gluten free a positive habit and lifestyle change?

[Hidden]

Being a twice diagnosed coeliac I find it harder to avoid gluten the second time around due to EU & UK laws and the food market place and only eat gluten in the "Gluten Free diet" ie 200ppm and exempted ingredients.

Having been on several sites related to Coeliacs and barred from one,the biggest thing I have noticed is the amout of "Super sensitives" those who react like a "Refractory Coeliac"to very low levels of gluten, why are Coeliacs when diagnosed not tested for sensitivity? having to find this out for themselves which can be a painful process until the bits fit into place, the facilities are out there.

It has taken me nearly 4 years to get to understand the implications that affect me, which is a long time to be continually ill.

[FionaGFG Administrator in reply to Hidden]

Thanks Tony, so you mean you eat gluten as classified in the CUK directory as 200ppm not just the 20ppm (which will now be classified as 'gluten free' vs the 'low gluten' for the above), when the new EU law takes effect in 2012?

I agree that I've been shocked how personally and on forums myself and many fellow Coeliacs have had ongoing problems since going gf. There does seem to be a huge gap in the diagnosis to practical help & know how of what to do / advise Coeliacs who continue to have ongoing problems despite being gluten free. After my many tests for fructose/ lactose intolerance, camera pill, 2nd endo I was finally told I was just slow to heal (?!). Yet what I've seen time and time again is actually that many Coeliacs once they begin to heal internally can't tolerate many things they did before e.g. sorbitol, asparatmene, chilli, alcohol, onions, corn, soy - the list seems endless. I often wonder if actually during the process of healing we're more liable to have some kind of IBS? Although I know this is an emotive issue for us Coeliacs as many were palmed off with this diagnosis for 10 yrs or more before finally being identified as having CD.

<How did you eventually get a refractory Coeliac Diagnosis ? *Feel free to add comments under the other Q on this recently on the helpvine for continuity. >

Meanwhile - back to the topic. So do you feel you're ingesting more gluten at the 200ppm (as it builds up the more process Free From products you digest) etc? Or do you ever deliberately eat gluten? Have you found you're intolerant to other items? If so how did you get tested for these?

[Hidden in reply to Hidden]

Having been diagnosed as a 6 year old (back in history) it seems I might have gone into remission for quite awhile until it reapeared in 2007. I went onto a diet that was very basic in April 06 and endoscopy end of May 06, in November I found I could have biscuits on prescription which is where it all began again Codex wheat starch. I also made my own bread using a GF flour which in December 2010 I was inform they could guarantee no more than 20ppm of gluten. Also advised to research the growing medium of Xanthan Gum as it could be wheat.

It is my belief that if Coeliacs have ongoing symptoms while on a "GF diet" they should keep a food diary and use elimination to find the culprit.

I also avoid ALL dairy products, Aspartame and false sugars also anything exempted in Commission Directive 2007/68/EC Annex IIIa.

I am being investigated for "Refractory Coeliac Disease" by complaining to the PALS that Coeliac Disease was in my medical notes from 1962 why has no body reviewed the notes or tested me since then, but can state I have a history of bowel problems.

This is the unpleasant side for me.

[Hidden in reply to Hidden]

A friend of mines wife is freinds with a coeliac who eats a slice of toast everyday and has a cake like a chelsea bun every weekend as a treat! This to me is not a treat it is being in denial.

I also feel that gluten is gluten regardless of whether it is in codex or Hovis. But I think that we have to respect the fact that this food is classed as gf in this country and I think this is important as I do not want to undermine how a coeliac who gets this food on prescription or from the shops and see's themselves as on a strict gluten free diet feels.

So I think we have to differentiate here between not sticking to the diet and thinking we can tolerate up to 200ppm 100ppm or 20ppm. Because it is not the coeliac fault it is the system.

I realised that its as important phychologically for a coeliac to see their diet as gf when on another coeliac message board there was a lot of resistance to the proposed labelling of food below 100ppm as very low gluten and several coeliac said they would not eat it? and I thought that does not make sense they are eating the food and not the label. After thinking about it I realised why it does matter to most coeliac and that its a psychological definition. So I think we as coeliac should be aware of all gluten in our gf food and respect each others choices for 'our' specific 'strict gf diet'. I think this is extremely important for non coeliac parents of coeliac children.

Jerry