My teenage daughter has had various health issues during the past year. Was diagnosed with CFS/ME then this year she had thyroid problems with fluctuating TSH (max 7.45) but now seemingly stabilised (and not medicated) - will be reviewed in 3 months. She has had extreme fatigue, aches, swings of mood etc. and was recently diagnosed as very low B12 (142) with range 197-866. She is now in the middle of her loading B12 doses (injections) and is showing signs of less fatigue. She has also had stomach problems with bouts of random severe sickness, stomach pains and nausea. She tested negative for coeliac screening but we have experimenting with a gluten free diet for the last month and her symptoms are much improved. So - can someone help me with my shopping please. I am going bog eyed (and confused) reading all the labels as I go around and shopping is taking SO much longer......
Are there lists available of what food is 'gluten free' in the supermarkets? Or a comprehensive list of what ingredients I should be avoiding? Is there a good book to buy? Or an App for her Iphone? She is off to uni soon and it would be good for her to know what she can buy to eat when she is not at home.. Hope someone can help us.
Daz
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DazR
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Poor her, must be rotten to be a teenager and have all that going on - at least she is on a path to getting better though.
If you contact coeliac UK and join then you can get a handbook (updated monthly) of all the gluten free products you can get. You can also shop at Sainsbury, which show a grain of wheat with a cross on all their gluten free products (not just the free from aisle but all of their own label stuff). Is there anything you are finding difficult to get? I'm sure if you let us know we can give you a quick and easy solution.
Thanks sassy for your quick reply! I tend to cook from scratch at home so it has been quite easy on the whole with main family meals. We have found GF fish fingers, pizza, brownie mix (very popular), Genius bread, Sainsburys free from nan, pitta and pasta. Also some lovely farmers daughter sausages in Sainsburys. Would like to discover some easy foods (or ready meals) that she would be able to cook/eat while at uni (and easy to prepare packed lunch options). Due to the CFS/ME and vit B12 deficiency she doesnt have much energy so would need to be quick and easy.
There's lots of Sainsbury curries that are GF, but that'd probably be an expensive way to do it. Sainsbury BBQ ribs (check the packaging, can't remember which ones I used to buy). Coleslaw, salads, houmous. My Uni days were spent eating 20p Supernoodles and toast (before I was GF).
I make lots of GF pasta (Dove's Farm stuff is great) and throw in cheese and spinach when it's cooked. Or a quick tomato sauce for pasta is a tin of tomatoes, chuck in some salt, pepper and fresh basil (and spinach to keep her iron up).
Chop up parsnips, carrots, sweet potatoes and normal potatoes into wedges, drizzle in oil (and rosemary if I have some) and put in a hot oven for 20 min for chips. Put red pepper, tomatoes, garlic in with this too.
Also, bake potatoes in the microwave, scoop out the insides, fill with cheese and bacon and put in the oven for 10 min. Always a winner.
For lunch that takes seconds to make I throw spinach, tomatoes, cucumber and tuna together. I bought a George Forman grill recently and have rolls with cheese and spinach panini style for lunch too.
I have more recipes on my blog icaneatthatrecipes.blogspot... Some are a bit more complicated but I do like to stick to one pan to cut down on the washing up!
I'm having fun - just joined Coeliac UK and have found some nice places to eat! Lots of information to absorb...... Love your idea for veggie/potato wedges and will look out for the BBQ ribs too. I will also check out your blog soon. Thanks once again!
Like your daughter (except I'm late 40s), I had low B12 (level 140ish and diagnosed with pernicious anaemia) but tested negative for coeliac. But nine months into being properly gluten-free feel massively better, so it can be worth all the hassle!
I got fed up with the supermarket labels scenario and mainly try to eat things that wouldn't have gluten in them normally anyway as it minimises the amount you have to think about it. So I do much more cooking from scratch - stir fries (with gluten-free soy sauce), salads, grilled meat and veg, stews, cheese, lots of rice and rice noodles and quinoa. Omelettes for breakfast or for a quick meal. It's more expensive but I buy much less junky stuff now, so probably balances out.
Nakd bars and Eat Natural bars for sweet snacks, or bananas. Nuts for savoury snacks or Burts/Nandos/Seabrooks (check flavour as some aren't OK) crisps or rice cakes.
A useful source of recipes are websites for the paleo diet as they don't use grains of any kind. Google paleo recipes and there are thousands. You can always add rice or something on the side.
Sainsbury's product list is on line if you google Sainsbury's gluten free. Another useful thing is the Ocado website, even if you're not buying from there, as you can filter items by gluten-free or not (I'm not sure it covers everything correctly but is a good starting point.)
There is an iphone app called Gluten Free (was Gluten Check when I downloaded it) which tells you whether certain ingredients have got gluten in. It's not bad, but to be honest I don't use it that much as I know my way round a bit better now.
Regarding the Gluten/Wheat issue - Sainsbury's have a comprehensive list on their website regarding freefrom foods they stock which you can download. Asda does as also. I cannot comment on the other supermarkets as I don't shop with them.
"Live Gluten Free" is a excellent site and have a app for phones. On the site they have loads of recipes, recommended tried and tested brands, info on loads of issues and a directory where to eat that is GF free or friendly. I love this site
Mrs Coelic also blogs and I have found this useful. I do gluten/wheat through choice as I'm hypothyroid and have read that the gluten molecule and our thyroid molecule look similar so our antibodies attack both hence why the two are linked so much.
Therefore your Daughters main issue may be with her thyroid. The TSH blood ranges have since changed and your daughter is Hypothyroid at 7.5 - The approx. reference range for this test is 0.4 to 4.5 - if you fall in between this range your "normal" (and a lot of us struggle within this range). I at 3.0 know I'm hypo and eventually got diagnosed, after being fobbed off for months, at 59.9 being very very ill.
thyroiduk.healthunlocked.com where you will find, and much more, an amazing amount of info and support. I personally think your daughter needs to be on Levothyroxine even if it's a small dose - 25mcg and an interim period of 3 months is way too long.
Has iron/ferritin been tested? as this can and does cause exhaustion. Vitamin D is another that needs checking as does Magnesium. More info on Mineral and Vitamin deficiency can be found on Thyroid UK. I would be lost without these sites.
Please feel free to personal message me if I can help further.
If you write to the supermarket's they will send you a list - a long list - of their gluten free products.
Tesco and Sainsbury were quick in replying, probably the best supermarket for labelling stuff is Aldi where they state gluten free on many of their products
I'd warn you against getting your daughter hooked on the Free From aisle of supermarkets. Most items are packed high with high fat, salt and sugar and she'll soon notice her waistline expanding. Neither are they cheap - which is an issue for a student on a budget.
Not all GF people or coeliacs can afford to join coeliac societies so here's some handy resources:
- coeliacinthecity.com/ This site is also useful - it includes GF reviews and features on the best apps to use
The simple rule is to avoid anything with wheat, rye, barley, oats. Or their derivatives eg soy sauce, Worcestershire sauce. Hidden gluten is also found in things you wouldn't expect i.e. ice cream, lemonade / cola made using barley. The rule of thumb is always read every label that she would eat / drink. That way you can be as safe as possible. After a while it will be easy as you will know which products are safe. Note in the UK all toothpaste is certified GF
as are all prescribed medicines. When ordering over the counter the pharmacist can help confirm if their is gluten in a medicine or not.
Ref B12 - have you asked the Dr to test her for Pernicious Anemia? It is important to know if her B12 is just low or if she has PA as it's an auto-immune disease and can trigger different stomach cancers inc. NETs (Neuro-endochrine tumours). For example people with thyroid problems are 3 times more likely to get PA, people with PA are 13 times more likely to get some form of stomach cancer (often these are slow growing and can simply be monitored).
PA = an auto-immune disease where anti-bodies attack the parietal (pa-RI-eh-tal) cells. These cells line the stomach and make intrinsic factor. Which is important for utilising B12 correctly in the body.
Will follow up links for Sainsburys (my local store) - and also the phone app.
I have used HealthUnlocked - Thyroid site and found it very informative. At one point my daughter was going to be medicated but we were instead referred to Endocrinologist due to her CFS/ME - during the wait her weird and scary thyroidy symptoms have abated and don't want to medicate unnecessarily (her FT4 and FT3 are fairly normal). If the symptoms reappear before the 3 months is up we will be straight back to GP.
A bit annoyed with GP as I have continually asked for Iron/Ferritin and Vitamin D to be checked. Latest is that it will be done in 4 weeks when her B12 levels are checked for the first time after loading doses. The Endo checked for Intrinsic Factor and Parietal Cell Antibodies and both were negative. Her Folate was low and she is on Folic Acid for the time being. Not sure why she is low B12 - she is not a great red meat eater but eats pork, chicken, bolognese, sausages etc. plus loves milk, cheese and eggs (also great with veg, salad and fruit). Just been told my FIL used to have monthly B12 injections but unsure why and he is no longer with and my MIL can't remember. If her levels remain good when she is retested after a month we will know a bit more.
Fiona - the book link looks good - but there are 2 versions a UK version (2007) and a more recent version from USA. Is it worth getting the older UK version or a more up to date copy?
I can't believe the depth of information you folks have dug out for me. I am very grateful.
I think we will have to find a few simple to make recipes (will look at those paleo ones too) and have a go at home before my daughter leaves for uni. I agree that basic natural ingredients are the best and safest way to go but as she is so fatigued she will also need some 'quick' meal options too.
It is really unfortunate that all this has hit her at a time when she is due to leave home. She is adamant she wants to go this year but we will assess nearer the time and see if she still feels the same. Her uni will be just over an hours drive from home so we are fairly nearby to assist with the occasional gluten-free food delivery! (and probably collect the dirty washing too....)
Sounds like she has spirit, and a good family to support her. Go girl!
Is she halls or shared house? Others will have to watch their crumbs around her/ she will have to watch others' crumbs to avoid cross-contamination too.
She is right not to let a crappy diet and health issues stand in her way of anything. I bet you are very proud!
much as i would always prefer to cook from scratch due to joint/mobility issues it isnt often possible, Tesco's have just started doing some free from meals in their chillled section, 3 cheese fussili, spag bol, and a couple of others, Marks and Sparks are also very good, most of their sausage's are fine, they do some of their crispbakes as gluten free and also a gluten free coated chicken steaks, unfortunatly most of it is looking at the labels but its amazing how much quicker at it you get,
Ref Her B12 - you only get this from meat - so it's good she isn't a veggie. Vitamin D is normally low in people with stomach problems inc CD. I'd suggest you consider getting her a good multi-vitamin that is gluten free (in consultation with your Dr) that can help boost her iron, VitD etc. See what the blood test results are like first.
Another quick way is to go online to the supermarket you use and look for GF foods on there and you'll get a list. All the supermarkets have this on their sites.
Fiona - thanks for your latest. Not sure where we go with diagnosis for B12 deficiency if it is not PA and not probably dietary? Will certainly get her fully supplemented after the blood tests (she will rattle at uni!). The pinterest site was great.
Jillp - a great idea - why didn't i think of that??
Found a few suitable ready meals in M&S last week in their count on us range they do a suitable chilli and rice, chicken curry and rice, risotto with chicken and mushrooms and a chicken jambalaya. I didn't buy them due to the calorie content but purely the fact that they are GF. I've found things like this handy if we maybe go friends and OH has a chinese takeaway with them, I can cook one of these dinners in their microwave without making to much of a fuss. Sometimes I cook some broccoli, green beans or baby sweetcorn to have with it, makes it a bit more healthy. At the moment they cost £6 for 3. Also thinking from an eating out point of view did you know Macdonalds fries are ok and that you can order things like their cheeseburger without a bun. They also give you a knife and fork to eat it with. I've also found a few different ready meals in waitrose. Most of the co-operative own brand sausages are GF and very tasty.
I think resourcing suitable food is one of the most difficult things at the beginning but it does get easier.
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