Recently several of my friends have been diagnosed with IBS/stomach problems, and having had issues when we have been out together, have been embarrassed to mention the issue or forced by circumstances- at which point they're usually relieved to find that I can completely empathise, and surprised.
I have posted here in the past about hospitals and medical appointments and weight gain associated with my thyroid, but not so much stomach stuff (Everyone needs to have a vent sometimes).
I'm not a doctor and I don't have any medial training- I can only pass on advice that friends and colleagues have given me, and reproduce the information I've been given by my doctor and dietician. Hopefully, if you're searching for help you find something helpful here.
I know what frustrated me the most when I first became ill was the lack of help or advice. I remember feeling very frustrated and alone- Stomach issues seem to be very taboo, despite the fact that 1/25 women in the UK suffers a thyroid issues and associated IBS/allergy/coeliac/ Crones something like 1/5 is diagnosed with PCOS- and again the associated stomach issues not to mention people who have mild reactions, intolerances, full blown allergies etc
This problem is exacerbated as often you'll be bounced around loads of people before a diagnosis is made- often it's assumed you've been given advice by one party so another doesn't divulge it- For example, 2 weeks ago I was finally given a list of foods considered to be "safe" or "issue" for people suffering coeliacs- I've been working with the dietician for 12 months. She assumed I'd already received this particular booklet and guidance and I spent 12 extra months in pain and poorly thinking I was doing the right thing.
I've spent the last 7 years searching the internet for help and on the whole have found it difficult to find useful advice- Some stuff is totally crackpot, and some companies really prey on people who are desperate to get their lives back- The NHS website is useful as it lists the symptoms associated with illnesses- so you at least know that you're not going mad, but in terms of managing them it's not all so great.
I've been lucky since we moved to the South East- My GP couldn't be more helpful, and I have had access to gut specialists and to a dietician in the last 2 years, however, the damage from the previous 5 under case of NHS wales is well and truly done. I would advise anyone who's searching the stuff on the net- If you haven't already seen your GP then do, if you have and they're fobbing you off get a second opionion. Be persistant. You know what "normal" feels like for you, if you're not feeling it get it sorted!
Right, The starting point for all of this- Whether it's a diagnosis you're after, you're pushing to see the dietician or a specialist or you're trying to find the issue foods you need to keep a food diary- it's the first thing consultants and dieticians ask for, and if it's not right you just get sent away to record the correct information over a period of time- thus elongating the time before you can receive help!
Your food diary should include:
1) All the foods you eat and the times you ate them- Don't be ashamed it's better to be honest here- I have had to admit to eating a whole box of magnums on a bad day but the dietician at this point isn't there to judge your choices, this is to find the problem foods.
2)Any reactions- e.g sickness, headaches, upset stomach, bloating, mouth ulcers/soreness and tiredness- it's not your job to associate them, jut record them and the times you noticed them.
3) Bowel movements- because you'll be asked in depth about when you "passed" and what it's consistency was- perhaps familiarise yourself with "The bristol stool chart".
4) How many drinks you have had- and if they aren't water, what they were- you're expected to drink 6 normal glasses of liquid per day- I try and drink a pint of water before each meal and one before bed as that works for me and ensures I drink enough, but you'll need to find what's right for you.
I tally my drinks on my food diary so then if I get a headache but can see I only had 2 drinks, that might be the reason- not whatever I ate.
You'll need to do this for a few months, then highlight any patterns- e.g whenever you ate something with pineapple you experienced a sore mouth/ whenever you ate full fat dairy products you experienced a stomach upset.
At this point you're just information gathering- you don't change anything and try and eat a range of foods you usually eat.
"Safe" foods.
These foods are considered to cause the fewest irritations to the gut- This information is from my NHS dietician and aimed at those with coeliacs/ crones- if you know one of these foods is a problem (For me, no broccoli, pineapple or rice! It will cause much regret!) obviously, don't eat it:
Fresh/frozen lamb without a sauce or coating
fresh/frozen turkey without a sauce or coating
Cooked carrot
Cooked celery
courgette
Parsnip
Sweet potato
Squash
Pumpkin
Broccoli
Brussel sprouts
Cabbage
Cauliflower
Peaches
Banana
Rhubarb
Pineapple
berries
Any kind of rice
Rice flour
plain rice cakes
tapioca
Rice noodles
Olive oil/Sunflower oil
Spreads from Olive oil or sunflower spread (Step away from the butter)
fresh herbs
Salt/pepper/sugar
Golden syrup
Preferred drinks are non caffeinated and not fizzy so rice milk based milkshakes, fresh fruit juice and water.
The Elimination diet
Ok- the next step is to devise a balanced diet from the foods on the safe list- aim to eat at your usual times and the same amounts of foods.
make sure your food diary is just as detailed as before- you'll need to follow this new "safe food" diet for 2-3 weeks. Record any symptoms.
At this point, you shouldn't have any symptoms- this diet needs to keep your stomach happy- if it's not right, identify the issue food and swap it for something else (Make sure you record this!) don't move onto the reintroduction until this stage is sorted.
For me, for example, I've had blood tests for Coeliacs, lactose intolerance, wheat intolerance and gluten intolerance (You can request these from your GP- especially if you're already in discussions about food issues you can even use the food diary to push for them if it looks like one of those food types is an issue)
So my elimination diet is really carb heavy, lots of rice cakes and toast and nutri-milk to make up the meals- but this is a short term fix for a long term problem- make sure you keep a record of your elimination diet once you've got it so that you're not suffering any symptoms- this is your go-to diet now for when your stomach is poorly as you know you're giving it a break.
Re-introduction
you can only do this once you've got a problem free stomach- if you're still getting reactions go back to the elimination, the blood tests and GP until that is sorted, otherwise you'll just make yourself horribly unwell.
Sadly, this is the long and boring bit- it's all trial and error and it's frustrating.
You add one portion of tone food to the basic elimination diet plan for 3 days together. and see if there is a reaction.
So, for me I have my nutri milk in the morning, then rice cakes, then a jam sandwich, then porridge in the evening, and then a portion of onions- to test if onions cause a reaction.
And I do that for 3 days in a row.
Then pick a new food.
And I continue to record everything in my food diary as before.
Obviously, exclude anything that you already know to be a problem- e.g, I will not be re-introducing garlic unless I want to spend a week with a migraine- I've already added it to my list of no-go foods. Certainly don't re-introduce any foods which blood tests show an allergy to.
Once you know a food is fine, you can start to re-introcuce them to your normal diet- it might be worth getting a list of "fine" foods and re-writing your diet plan accordingly- otherwise you get some really odd food combinations.
Only add things in that you are sure are fine- if you're unsure, wait and test them again- it's worth doing this properly so that you only have to do this once!
Problem foods- these are the foods most people have issues with- that doesn't mean everyone does there will be things on here which are fine- and some which really aren't!
tap water
potatoes
cows milk
eggs
yeast
pasta
Weetabix
soya milk (plain)
Walnuts
Peanuts
Onions
Beef- no sauce or coating
Tea
Coffee
Chocolate- Dark chocolate
Chocolate- Milk/White- especially if cows milk seems to be an issue
Cheese
Plain yoghurt
Cornflakes
Pork- no sauce or coating
Porridge
Bacon/Ham
Tomatoes
Rye bread
Peas
Beans- no sauce
Chicken- no Sauce or Coating
White fish- No sauce or coating
Oily fish- No sauce or Coating
Barley
Vinegar
Citrus fruits
Apples
Pears
Melon
Dried fruits
Spirits/beer
Quorn
Some foods are difficult to obtain- if you want to test them but can't find them in tesco try
www.goodnessdirect.com
www.dietaryneeds.co.uk
Right, at the end of testing all these foods you should now have 2 lists- one of things you should never eat ever again unless you want to spend a very long time in the loo, and things which are fine.
Using the list of things which are fine, devise a diet plan.
Make sure you're referring to your eat well plate and have all your food groups in there! If you're struggling or your list is very limited- or even just to check what you've done is right- make an appointment with your practice nurse to check it for you.
Make sure you take your food lists and food diary with you so that you can answer any questions.
They may also be able to give you helpful advice, as they tend to have more experience with dietary needs than GPs- and often are more understanding.
Congratulations! You can now live your life poorly-free!
What do to at restaurants/eating out:
OK, essentially you have 2 choices here- choice 1 is horribly irresponsible; "Secretary, clear my schedule tomorrow I will be unavailable" is my current standard- it means eat what you like but be prepared for the consequences- sometimes this us unavoidable- I often find at events or weddings where the menu is set or limited you're sort of stuck at go for it or go hungry.
The second choice is this: Every chain restaurant by law now has to show it's calories per dish on their website- on this "nutritional menu" they often show their ingredients too- so try and get that on your phone or computer before heading out.
If it's spur of the moment just ask- tell the server you're "allergic" to the food you're avoiding- and they'll usually be pretty forthcoming with a new menu or suggestions from the kitchen.
I know you shouldn't lie about the severity of an illness- but for some reason if you say you "react" or are "intolerant" to something, people often just assume you're picky and aren't careful to avoid that food type in your meal- an allergy conjures up images of culpability and law suits. Tell that white lie, I won't judge you.
Other helpful tips:
- get a good multivitamin- if you have an upset stomach or are avoiding food groups you're going to be deficient in almost everything. Get a multivitamin with Iron. and B vitamins. I get mine from holland and barret for £6 per tub and they last me a month. Read the label carefully- some binding ingredients might cause reactions- if in doubt get your GP or practice nurse to recommend something.
- Contraceptives- this one isn't applicable for the gents- As above, if you're ill all the time your pill isn't effective- the last thing you want is to be preggers and dealing with everything else too- you can ask for contraceptive patches which are the same hormones as the pill- or ask about other methods of contraception- the other advantages will be that your periods will be regular which is one less cause of stress etc.
- Skin/hair- I often found that my skin was bad and my hair thinned before I got on top of my food reactions- looking ill made me feel worse- I control my skin reactions with my contraceptive, and there are shampoos available to help prevent hair loss- speak to your GP/ Pharmacist- increasing your iron intake also works wonders for both!
- New hair in odd places- This is more a Thyroid/ PCOS issue but it's still horrible and the last thing you need when dealing with everything else- Speak to your GP as Laser hair removal is free on the NHS if you have a diagnosis for either of the above, but you will need to ask! Waxing is also really effective, and private clinics do laser hair removal as a cosmetic procedure if you don't want to ask your GP.
- Don't be too hard on yourself- you'll get things wrong sometimes, fall off the wagon, drink a pina colada or whatever your food equivalent is- Don't worry, this gets easier- you'll quickly learn which things are OK and what's not. Talk to people and don't be afraid to cancel plans if you're not well or can't face it (I tend to cancel on people if the plan to eat italian food- sooo many potential pit falls!). no-one looks hot or feels sexy if they're bloated or sick, and sometimes you'll feel like the world is against you. Ask your GP for help- or the nurse- Some months I have to see my GP every week and I'm not ashamed to admit it- This is a massive lifestyle overhaul and it'll be hard to get used to to start with. Be honest with people- you'd be surprised how supportive they can be and maybe by how many people are going through the same thing.
- immodium put it in your handbag. it will be your best friend when you get stuck on a train with no loo and a dodgy belly- or have to take a flight, or make a presentation- it stops your stomach misbehaving in 30 minutes. it can't help the cramps or bloating- but it will stop you being an olympic competitor for the 100m dash in the middle of an important works lunch.
Avoid like the plague:
- Food testing companies. Companies which offer to do a blood test and then tell you what you're allergic to- if it was that easy, your GP would tell you to do it. They probably work well if you're otherwise healthy but get bloated occasionally. if you have a diagnosable condition- especially an autoimmune condition- they will just show up all kinds of false readings. Allergy UK recommends against them, as does the NHS and the dietetic society. It'll be a waste of £300.
- raw food/juicing/cleansing/detox etc almost all of those are designed to give people the runs- do you want to spend even more time on the loo?! Whatever "June in accounts" says, just smile, nod and ignore- you have a medical condition, it can't be cured by buying a blender.
- most other people You deal with other peoples "brilliant" advice in the same way you deal with "June from accounts". You know what makes you feel OK and what makes you feel ill. your body is different from everyone else's- thats why this stuff is such a pain to diagnose.
Really helpful websites and people:
- Allergy UK. If you email them, they can put you in touch with one of their dieticians- so they can give very specific advice and they're so kind and understanding. Use them to help support your demands on your GP too- they can advise you of what to ask for as they're NHS dieticians- normally based at the JR in Oxford http://www.allergyuk.org/
- Step by step They're a telephone counselling service, but they give advice on anxiety and stress-which make things like IBS 1000000 times worse! they're really understanding and will send you leaflets and helpful advice as well as listen whilst you offload- better to whinge at them than your partner! http://horizonhealth.co.uk/stepbystep.php
I'd be really happy to hear if theres anything I've missed- I hope this stuff is helpful!
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