A lot of Coeliacs on our main facebook page and other forums are reporting problems with supposedly gluten free grains: Quinoa, Rice, Corn, Millet etc
Do you have this problem? If so how can you tell? Have you been tested for an allergy/ intolerance to this? Did your dietitian help you work out the problem?
We're curious ...
The first thing I would ask is "have you had this on its own or with the GF foods".
Much is being blamed on whatever without first finding out if it is actually the gluten in the "GF diet" ie 200ppm that is causing the problem or contamination.
Very true Tony. I have to confess I hardly ever get food on prescription as I'm not a fan of the codex wheat starch yet nor am I a fan of the supermarket free from aisles (packed with fat, sugar, salty foods and often still at 200ppm). The good news is that many processed 'Free From' foods are now being revised to bring them inline with the new 20ppm for 2012. Yet many won't reveal what level they are working to.
Let's see what the general consensus is on here. Are you having problems eating 20ppm GF grains? Or are you eating 200ppm GF grains and having problems...
<b>Updated on Feb 10 2011 9:04PM:</b> Often a period of totally GF natural foods initially after diagnosis seems to help many Coeliacs heal/ settle more quickly. It can be that introducing GF bread, biscuits, cakes etc is also when the problems begin to arise again.
I've tried millet and teff and felt wretched after each of them. I cooked both from scratch, so they weren't ingredients in any of the unhealthy free-from foods. I've not braved any new GF grains since.
That's a shame India. Do you think they were packaged in a contaminated factory ? Have you ever tried rice, corn, buckwheat since going gluten free?
I and others in the team found that when initially going gluten free everything we ate aggravated our stomachs. Even salad! I often think that whilst the villi heal the tum finds it hard to process most foods.
I would have expected the teff to be uncontaminated as it came on prescription but I can't tell 
I got the millet from Holland & Barrett though and I don't think their products can be trusted. There are a lot of things I can't eat though, including corn, and I keep developing new intolerances, the latest being spinach. Rice is my friend though and I do ok with buckwheat 
I know it is dead tricky especially if it's not clear that it's produced in a gluten free environment. I think Corn is pretty hard for most people to digest - that could be an added issues for most Coeliacs esp those that are healing (it can take up to 3 years for some people to heal internally esp if diagnosed as an adult).
I'm interested in further intolerance testing. It seems so many of us have ongoing problems after diagnosis after that it'd be a natural next step for Drs to look a little deeper. How have you been tested for other intolerances e.g. fructose, lactose, other food groups? Did you find the dietitian helpful or did your Dr refer you for more tests? Curious as it might help others here having the same problems.
I have trouble with Millet as it has a mild glutening effect on me, I have also had bread made with Teff flour and that was OK, So I suspect that millet flakes can be contaminated in the same way as oats.
Jerry
I have trouble with fructose and have to be careful with lactose, I was also told that many coeliac do not absorb fats well and this acts like a laxative. I think that coeliac have a much more sensitive intestines than wheaties and I think that we sometimes need a blander diet.
If you are still having trouble on your gf diet, then a good start is a food diary and start with known 'safe foods' and introduce suspect foods like grapes or apples because of the fructose and then see how you feel.
Have you come across Manuka honey, Sainsbury's sell it for around £8.00 for a jar, so its expensive. To me if foods can make us ill then foods can also make us well so I believe that there are super foods for people who have food intolerances and I think that Mauka honey is one of them for coeliac.
After having a GFG team chinwag at the weekend we've decided to do some in depth blogs on this topic over the next few months.
Keeping a food diary although dull, is always a good way to spot problems and make connections.
Did you know that as we heal after years of CD damage to our stomach and immune system we can often start reacting to foods that previously we had no problems with. The simple explanation for this is that our immune systems attack gluten which is a protein. Yet as it's on 'red alert' warfare mode it also shoots a few innocent proteins as it suspects they're bad (it's got a bit trigger happy like Jack Bauer in 24!). So... the interesting thing is whether these reactions settle down or stay the same. In my own personal experience it got to the stage where I looked 6 months pregnant EVERY time I ate something after 6mths strictly GF. My blood tests results were perfect 0s for gluten anti-bodies so neither I or the Docs could blame it on gluten. We were all stumped. I wish more research was done in this area as I see many Coeliacs online end up eating very little post diagnosis as some can feel awful no matter what they eat. Thankfully our resident nutritionist has been reading up on the latest CD research and we'll be posting some blogs on this soon!
Until then...do keep a food diary, do remember that your body may be struggling to consume things properly for the 1st time in years, do bear in mind that it can actually take 5-10yrs to regain full health e.g. although your villi can heal and regrow after 2-4 years GF it doesn't necessarily mean they are functioning as they should do or that you're yet processing nutrients and vitamins effectively. So anything we can do as individuals to eat good pro and prebiotics, take in additional vitamins, avoid stimulants that irritate the stomach / immune system and adrenals eg alcohol (groan!), caffeine, sugars, hard to digest carbs etc all helps our bodies recover.
I know this was discussed almost a year ago, but even though I was on a gluten free diet for over 20 years, I still didint feel 'right'. I have since cut out all grains, but still keeping to seeds, nuts etc and feel so much better!
There is a lot of info on the net about living grain free (seems to come under the title of the Paleo Diet) and I will never go back!
I've had problems with buckwheat and millet from a health food shop that was clearly contamined in the packaging process, but other than that can tolerate them OK (don't eat them regularly though).
I have extreme problems with corn/maize - including maize starch and all the derived sugars and oils (dextrins, etc in so many foods). I get gut problems worse than with gluten, plus allergy symptoms of itching, burning mouth, stuffy nose, major heartburn and acid, etc.
I was tested with ELISA blood tests and IgE testing, and didn't show up positive on any of the standard allergies (corn wasn't included in the tests), but did show a high total IgE, which apparently indicated something allergic was going on.
My doctor wanted me to go on to have further allergy testing in the NHS but because I hadnt had an anaphylactic reaction I wasn't eligible.
I now avoid ALL corn/maize products as much as I can, take antihistamines when I can't avoid traces or small quantities (eg when eating out gluten free), and eat a generally low starch diet that mostly just uses rice or tapioca or potatoes as the starch.
Corn allergy makes it incredibly difficult to get medications that are maize free - mostly limited to liquid or soluble forms of things as everything seems to have either maize starch filler or microcrystalline cellulose (usually derived from maize)
I also never tolerated the 200ppm levels or codex wheat starch. I got diagnosed in NZ where it was still "no detectable gluten" and was fine there, but when I moved to UK started having problems again until I really went to naturally gluten free rather than codex levels. I'm really glad to see now the two levels being labelled.
Funnily enough I can tolerate oats, and have them occasionally (less than once a week though)
How many of you have milk problems?
anyone else had problems with Neals Yard millet grains?
Petition to have GF labeling revised
Why do you have to?
Have you been on a GF holiday to Portugal?