18th July. I posted the blog below about ten days ago and there has been a constant flow of comments and suggestions both via the blog, Facebook and Twitter, including one from Cheryl, the mum concerned (see below) detailing all the foods to which her daughter reacts.
Recent suggestions have included Natasha Campbell McBride’s GAPS approach and testing for Lyme disease, heavy metals and parasitic infections. I really appreciate all the input – and please keep it coming. Even if none of your suggestions prove to be answer they are at least poviding Cheryl and her family with some much needed psychological support.
July 6th. We got a call yesterday – the kind of call that we receive, sadly, all too often – from a lady whose young daughter was currently on a wheat and rice-free diet while her doctors try to work out how many other foods she might be reacting to. Her mother was desperate to find an ordinary white bread that her daughter would eat that did not contain either of her major allergens. (‘Mum, that’s awful – you can’t expect me to eat that!!!’) But, as anyone who is wheat and corn allergic/intolerant will know only too well, this is almost impossible to find as the two main replacement flours for wheat, barley and rye, in all foods designed for coeliacs and wheat intolerants, are corn/maize flour and rice flour.
I did a quick search through our directories but, even the most specialist bakers who cover the most unlikely diets (such as Artisan Bread or Celia’s Kitchen) all use rice flour. I thought I had struck lucky when I looked at the ingredients for the new Genius croissants that we were just about to taste (review up on FreeFromFoodsMatter very soon) but then, right at the bottom of the list, the very last ingredient, was rice flour. Now what on earth would be using such a tiny amount of rice flour for……
I had asked whether she was prepared to bake – which she was – so I had immediately thought of Jacquie Broadway’s great corn-free amaranth bread – but that depends on ground almonds for its texture and the child is also nut allergic. We did have a recipe for a banana based bread which was OK as far as ingredients were concerned and which tastes quick cakey so might be acceptable– but, if anyone has a great recipe for a wheat, rice and nut free white bread, please let us know!
I always feel dreadfully inadequate when we get these kinds of calls. We have been in this business for so long that we really should have all the answers – but we never do. However, I have come to realise, over the years, that it is not always just the answers that people need. Almost more important sometimes is a friendly soul on the other end of the phone, who is prepared to give the time to their problems, does not dismiss them as hypochondriacs or weirdos and assures them that they are not unique and that there are other people out there with similar problems. Even if they do not learn anything very useful, the conversation seems to recharge their batteries and give them the energy to battle on.
I was reminded of this a few weeks ago when we got an email from a lady asking for one for the ‘foreign’ allergy ingredients lists we used to do in French, Spanish, Portuguese, German, Greek and even Russian! These days you can find all of this sort of stuff on the web so ours have long been abandoned. She was going to Greece and could not find the one we had sent her years ago. I was away when her request arrived so I emailed back apologising that I had not been able to pick up on her request in time and hoping that, even without it, they had had a good time – and got this very lovely email in return:
Hi Michelle,
Thank you for replying – as always, so kind. Yes we survived but still can’t find the list.
Talking of surviving. Just wanted to say that in the early days when my daughter came down with some sort of strange viral illness that appeared to result in multiple food intolerance and the doctors implied that perhaps she was faking it, (Is she being bullied at school?), in the days when “intolerance” was a made up word used by cranks – you, and your publication, represented a liferaft in an otherwise hostile storm. We clung to any piece of information, trying to work out what to do and what not to do, trying to work out what was good advice and what was not, continually getting it wrong and trying again. Without your help, it would have taken so much longer to get back on track. Indeed it was so good to find someone who believed we were telling the truth!
Now my daughter has left home and taken her problems with her, studying Nutrition and Public Health at university, managing her diet well and is usually fairly fit.
I’m certain that the work you did paved the way for intolerances now being taken so much more seriously by the medical profession. I know that others in a similar situation today, though still having an awful time, would at least be treated better than my little girl was.So just wanted to say a big THANK YOU Michelle!!!!
Well, I am not sure that we had many answers for this lady then either, but at least we seem to have provided her that bit of support so crucial to ‘getting there yourself in the end’…..
And thinking of making a difference to people’s lives, Micki Rose’s Barrier Plan diet seems to be genuinely transforming the lives of those who are working through it – not least of which is her own. See my next blog – post coffee break….
I have made sweet potato bread (albeit using rice flour) but I’m sure it would work really well using alternative flour. I’ll try to experiment this weekend and let you know. If it’s any good I’ll send you the recipe. You basically boil your sweet tatties and mash them in with the flour and fry like patties. Really yummy!
Hi there,
You could try recipes using coconut flour or ground flax. I’ve been experimenting a bit with my Avocado loaf (which originally uses ground almonds) but using Coconut flour instead – it works a treat but you have to amend the liquid and egg quantities. Let me know if you want further help. I would also suggest looking up recipes on the ‘Paleo Diet’ front. There are plenty of recipes without using almonds, and have great ingredients lists avoiding rice, wheat etc since grains are not recommended on that particular lifestyle/template. I can highly recommend as a way forward since it has worked for me,
Thanks
Ceri
Thank you – both to Ceri and Ruth. I have also just heard from Jacquie Broadway to say that she actually does not always use ground almonds in her amaranth bread and is going to do a few experiments for us. I’ll pass all your ideas on the Cheryl.
Dani had just emailed us a follows:
The magazines and websites Livingwithout and Allergic Living should have recipes for a wheat free, rice free, nut free bread. Both magazines and websites have areas for recipes and specific areas for substitutions. I know I have recently seen bread recipes for a quinoa bread as the base.I have seen an increase in recipes using amaranth, quinoa, millet, teff and sorghum. I also used to make a sweet potato bread. Also, if tolerated bean flours can be used.
Some other websites to search for would be:
Gluten free girl and the chef
Food allergy assistant
Gluten free on a shoe string
Gluten free goddess This on is made with sorghum, tapioca and millet flour.
Gluten free mall
Thank you so much Dani….
I have very briefly looked as most of these and I cannot see any breads/recipes which specifically exclude wheat and rice flour but I have only spent 10 minutes on it so far. Several recipes use proprietary gf mixes and do not say what they contain. However, following links through form the Gluten Free Mall I did come to
Breads from Anna who supply gluten, soy, nut and rice free bread mixes…. But, of course, you would have to get them from the US.
But great to have so many leads to follow up – thanks again Dani!
Hi Michelle,
I have just read this whilst sitting in a field in the middle of Devon. In the rain! Thank you so much for your kind words about the barrier plan; I am SO pleased with it myself, difficult as it is to have to do it, at least there appears to be a benefit at long last.
I originally emailed you with the almond bread – hadn’t spotted the need for nut free, apologies – not very easy in this place! Is the lady all nut-free, I wonder, because I have substituted lots of different nuts and seeds in that recipe. Coconut bread works well too. I add a little arrowroot to it to bulk it up and plenty of bicarb to make it rise. There are quite a few coconut recipe sites which might be worth googling for exact recipes. I use the Coconut Flour Cookbook.
All that said, no bread made like this is ever going to taste like white bread. You do have to get used to it. I find cutting very thin slices and putting them in a low oven makes lovely crackers which can be very useful.
I find once you get out of the ‘I need bread and other foods that look the same as normal’ phase of food intolerance (a toughie, I know), life becomes a lot easier. For example, I use thin omelettes as wraps, Indian gram flour dosas and lots of lovely stuff. I have just set up a trulyglutenfree food page on the site now where there are already over 100 recipes, many of them nutty, but plenty which aren’t and have no grains. Might be useful to search through. Hope those musings help a bit.
Bless you, Micki – but you are meant to be sitting in a field relaxing, not answering blog posts!! (And there will be a much fuller post on the Barrier diet very soon – but I got sidetracked today… So, what’s new?…..)
I agree that life on a restricted diet becomes very much easier when you can ‘think yourself out’ of ‘normal’ food – but that is so much harder for young child who really does not understand what is happening to them anyhow and is trying to hang onto what they know and understand….
Anyhow, the Truly Gluten Free food page is a great idea and I will certainly direct Cheryl there.
Meanwhile, enjoy your field!!
Am back from field now! Just being able to be in a field surrounded by grass as a severe hayfever sufferer all my life was fab! No reaction AT ALL. Perhaps I am going to get Summers back. Perhaps, more importantly, my lung/mucous barriers are strengthening and are not allowing as many pollens through; I can only hope..
I had ‘young daughter’ in my mind as an early twenties girl, not a young girl for some reason; perhaps this shows my age now that I think 20s is young!! 🙂 Anyway, I hope she got some good ideas and is feeling more hopeful now.
That is BRILLIANT news about the field! Sooooo exciting!!
Thank you also for the thoughts about the bread- as you can see, we have had lots of ideas – and lots more on Twitter. Stevan at Foodamentalists is even sending us a special mix!! So fingers crossed for her – it so hard…..
Ooh, interested in the special mix when you have it!
Sure thing – we were going to test it out here and put the details on the FoodsMatter site. Watch this space!!
Just got an email from Jacquie as follows:
I have today made bread without ground almonds. (see here for her very successful recipe with various adaptations.) Looks and tastes much the same. Do pass on the recipe. I do think it is better toasted and infinitely better than any NHS plastic rubbish.. The flour (amaranth) comes in kilo bags, so I added the ground almonds so that with 8oz I could make 2 loaves with one bag as it is so expensive. I have no idea how I evolved the original recipe, but I think it is very acceptable. I also have new baking powder from Barkat. My new CarbDigest from America is excellent and I am doing so much better. No doubt in my mind that I now have a complete carbohydrate digestive deficiency.
This recipe does not use rice flour. I cannot use soya flour which is in the recipe and the author suggested to me that I substitute the soya flour with half bluckwheat flour and half millet flakes and that seems to work fine. I don’t put in the sweetener either and it works fine with nondairy milk such as almond milk.
Thanks Carol – will pass it on. Looks like a really tasty recipe actually – and I just love buckwheat! But it is not for me….
I’m a mum trying to cope with feeding my 8yr old daughter. A brief history ; diagnosed with a wheat allergy 2010 which we coped with without problems just a change in diet, she has since in the last few months devloped more extreme allergies where she is unable to walk if she has any of this list graded 1 not too bad and 6 being more extreme;
Egg 1
Pea 2
Almond 2 and we are told to avoid all nuts
Walnuts 2
Honey 2
Wheat 3
Gluten 3
Rice 3
Green Bean 3
Lentil 3
Strawberry 3
Cabbage 3
Broccoli 3
Sweet potato 3
Soya 3
Sunflower 3
Buckwheat 3
Cherry 3
Barley 4
Rye 4
Quinoa 4
Potato 4
Oats 4
Beetroot 4
Silver Birch 5
Maize Corn 5
Timothy Grass 6
Can anyone give any advise or know someone with this many ?
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
Oh Lord, Cheryl – that is a truly horrendous list….. We will tweet and Facebook your comment as well and see whether anyone else has anything helpful to offer.
Hi Cheryl – we have had several suggestions on our Facebook page which included Natasha Campbell McBride’s GAPS diet, the possibility of Lyme’s Disease and EPD. Do check in there but I am also copying them in here too.
‘I recommend the GAPS diet with Natasha Campbell-McBride, get the book on Amazon, elimination diets will not work at this level, needs to build up the gut flora … here are also GAPS practitioners.’
‘Check out http://www.epd.org.uk
Information on Enzyme Potentiated Desensitisation from Friends of EPD. Treating allergy and intolerance with beta-glucuronidase and a mixture of dilute allergens.’
‘Ok I have an out there question but given that the allergies cause neurological side effects and that the food that she reacts to are what they are have you consider testing for Lyme disease, heavy metals, parasitic infections, just a thought? Also curious about gut health and vitamin d levels, going through a lot of this myself with my family, Goodluck xx’
Hi,
I’ve recently started a food blog that’s vegan, gluten free, and avoids common allergins like nuts. I don’t have the perfect bread recipe, but these cupcakes should fit the bill- you can substitute tapioca flour or arrowroot for the potato. I’ll keep you in mind during my future experiments!
Brilliant, Stephen – thank you – must take a look at your blog too!
Not sure what testing has been used to get those scores: RAST/IgE? Of course, I can see most grains in that list and the first was wheat so would have to look at the coeliac/non-coeliac gluten sensitivity side of things and the barrier diet. First thing I would check out is leaky gut and what is causing her to build so many reactions. Regrettably, my own list is just as long. Hope that helps a bit.
I was tested & allergic to nearly Everything in 1987-88. I went to dozens of doctors who did not help me, but finally was referred to holistic MD, who tested me for heavy metals, which I had in alarming quantities. I was told to “make final arrangements,” as he’d NEVER seen any readings of a living person with such high heavy metals. I went through chelation therapy for nearly a year. I consumed 3-4 quarts purified water/daily. Eventually, I lowered my heavy metal levels and could re-introduce some foods into my diet.
My suggestion is to find a trusted, holistic Doctor who can run tests on heavy metal toxicity, as it was the ROOT CAUSE of my extreme allergies, eczema & psoriasis. I have occasional problems, but am MUCH better. Good Luck, my best thoughts are with you to solve this mysterious situation.
Thank you, Susan, and I am so glad that you are so much better. Do you know how you got so many heavy metals into your system? For many people it is via amalgam fillings but it sounds as though you may have had a greater exposure. I have also heard before that metal problems are important in psoriasis. In any case, very pleased that you found our way through the maze!
Interesting Susan, what test method was used to confirm the heavy metals please?
You could try to look into Helminthic therapy, it has managed to help people with severe allergies and food intolerances. Look also for John Scotts knowledgeable essays on the subject on this site.
But late to it but I make breads that are grain and nut free. Drop me an email if you’d like recipes. They are pretty much the same. Not far off at least.
THank you for the offer. I can always post a recipe here – I am sure someone would be able to use it.