This is a slightly long but very interesting video on the subject of non-celiac gluten intolerance. Turns out gluten is in every grain, not just wheat, barley and rye. He explains the link between gluten intolerance and all kinds of chronic illness including thyroid disease.
Really seems to chime with what we're seeing with my daughter's symptoms. She experienced some improvement going (wheat) gluten free but nothing dramatic. She has tried giving up all grains a couple of times and felt significantly better, but found it too difficult so went back to eating "gluten free" grains and has experienced a marked deterioration each time.
I'd be really interested in hearing others' experience of going entirely grain free and whether or not it's helped.
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Josiesmum
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I always feel better - and look better ( less puffiness in my face and weird stomach distension) when I avoid wheat, barley and rye and oats. I rarely, if ever, eat corn so I am not sure how it affects me.
When I have had food intolerance testing in the past ( usually blood testing), the 1st 3 grains would be usually up there in the red zone. Strangely, however, gluten wouldn't appear as a problem- though they say the gold standard is a stomach biopsy which I have never felt inclined to do. Monitoring how you feel is usually the clearest indicator.
Yes, it is hard to give up not least because of the enormous quantity of wheat that we consume. It is everywhere. My husband is supportive - we rarely have wheat products in the house and that helps. No beer either - DESTROYS me!
It is hard even where I live - impossible, almost - to find rye or spelt or corn bread that doesn't have wheat added. I just discovered the brown rice japanese noodles I had been enjoying also contain wheat. Grrrr! In the end it's easier to work on changing habits. I don't bother buying commercially produced "gluten free" goods as they are usually a) expensive b) full of other ingredients - including a lot of carbohydrate.
I don't know how old your daughter is or how much control she has over her food choices. It's true that being rigorous takes a lot of effort and patience and planning. Perhaps planning her meals for a fortnight - breakfast, lunch and dinner - writing it down, pinning it up, etc might help. She can stick with it for a couple of months and then see how she feels.
I know Tigreg - the point is that my food intolerance tests never highlighted gluten as a problem. Certain grains yes. But never spelt interestingly. Or oats. So I did assume that gluten wasn't a problem for me, but another protein perhaps...though oats have *always* been a problem...cross contamination? Something else? Trial and error...20 years and more...removing it, adding it back in, etc etc. have told me that I do have a problem with gluten. The fact that I was often told WHEAT was the problem in the early days( and people often think wheat and gluten are synonymous ) meant I thought rye and spelt were sound alternatives. Not so.
Thanks very much for your response. Yes meal planning, and especially snack planning, is essential. My daughter is 18 and is 100% grain free (no rice, oats, buckwheat, or any other grains) at home and there is a very marked improvement when she has a stretch of several days grain free.
However, she finds it impossible to keep up when she goes out with her friends. I think it's really difficult for young people trying to 'have a life'. Unfortunately when she goes out to eat, even if she chooses "gluten-free" dishes such as rice, she suffers from puffiness and exhaustion for several days afterwards.
Alcohol is also a big problem, even if she has a small amount. This video makes perfect sense based on our experience. I believe she can get better if she is strict with herself but being chronically ill is very depressing and understandably perhaps, she feels she needs these nights out for her mental health. It's really a catch 22.
I do sympathise - it must be hard for her. Thankfully she has a supportive mother!
BTW I find red wine is pretty much the only alcohol I don't have a negative reaction to. White wine a killer, beer a no-no..long ago realised my summer tipple made me feel lousy ( Campari).
It is hard not to let our health issues restrict us - but balance has to be found. As you say, for sanity, as much as anything else.
I haven't watched the video, but I did read 'Grain Brain' which tells us that gluten is one of a group of proteins called gliadins and these gliadins occur in all seeds of the grass family(also known as cereals). That includes rice, corn and millet, which contain gliadins other than gluten, (which strictly speaking includes several proteins which form stretchy stringy chains when what, and give bread etc it's structure). Only gluten seems to cause coeliac disease, an autoimmune disease where the immune system destroy s the gut lining. I do wonder whether other gliadins might cause a similar reaction in a few individuals, but it doesn't seem to have been documented.
The word 'grain' is rather loosely used but is also used to describe non grass seeds with a high carb content, like quinoa and buckwheat. These do not contain gliadins.
How am I so well educated? Well I have found the hard way that I also react to all grains. And yes, it is very hard to avoid them all. Intend to eat rice, and a little corn, but the gf products I avoid if I can. I have tested negative for coeliac, so feel its safe to eat them occasionally, but most of the time it's not worth it.
'Safe' starches are buckwheat, quinoa, tapioca, potato, sweet potato and root vegetables. One gets used to it, but the real challenge is convenience food and packed lunches! Only your daughter can decide if its worth it!
Thanks Ruthi, If you have half an hour to spare, please do watch the video, he explains everything about the different types of gluten found in different grains, and the different manifestations of gluten sensitivity, of which celiac is one, thyroid disorders are another, etc.
Your experience sounds very much like mine Ruthie. Grain Brain is well worth reading - I understood a lot more after this book. Yes- the hard part is out and about, travelling, meetings. Sandwiches sandwiches sandwiches. My yoga class - of all things - did a liitle farewell party last week for the teacher. Not ONE food without gluten!!
I'm probably more allergic to oats than wheat - at least holding a loaf of bread doesn't bring me out in a rash and make my eyes and nose run. I seem to be OK with rice (and buckwheat etc). I occasionally eat millet, but it is so rare that I can't really draw any conclusions.
What worries me is the extent to which we don't really know what is good and what is not. Its easy if you have an obvious allergy - but if its just destroying you from inside????
I knew that wheat caused me a certain amount of gastric pain when I was 30. But it just wasn't convenient, and I loved my home made bread! So it wasn't until things were really bad 30 years later that I gave it up, and eventually all the other cereal grains.
And I have lost count of the people who tell me that they are fine with some poison or other - and couldn't do without it! We are so very good at fooling ourselves!
I know! I am lucky that I don't often have to contend with the sandwich thing - I work from home. If I eat in a restaurant its not too difficult now. I do carry rice cakes and sardines in the car for emergencies!
:-)) I thought I was the only one with tinned fish ( mackerel fillets my preferred) when I travel! Brazil nuts, tinned fish and apples. Hotel room suppers.
Just would like to add to this blog, I too am gluten free and make cauliflower rice if I am making curry/or dishes with rice. It is just a head of cauliflower in the food processor whizzed until it looks like rice, and fried in coconut butter, it really is delicious and healthy and avoids the use of rice if you can not tolerate it.
Wow, good for you, it takes so much time to research, especially for others.
Just to share my experience briefly - I have been hashi's on and off for 25 years, yes it can go into remission, but I recently found gluten and oats free made a huge difference, no more 3 day headaches, no more ringing ears and stiff neck, hallelujah. But, just by sheer luck, I also found that gluten free shampoo/conditioner, moisturiser, lip balm and make up as well where possible, made up that 10 - 15% to feeling great rather than ok. Apparently the gluten protein does absorb through the skin, and, like food, it is in a lot of health and beauty products. Also, a thought for your daughter, I bought some digestive enzymes specifically for gluten intolerance, really good for when she goes out with her friends or even at home and might be 'glutenized', it's not a fail safe remedy but definitely helps with the odd mishap. If you want to try the beauty products I am happy to share my online sources, just pm me. Most of all, good luck with it all.
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