I have had five conversations about this single subject in the last couple of days; people are feeling symptoms despite their strict adherence to the trulyglutenfree or Barrier diet, why?
Once I’ve established nothing hidden is going in via the diet (usually going out, soup stock, cross-contamination), my next question is what about other things going into your mouth or onto your skin?
Medicines are a real pain in this respect as far as I’m concerned because they invariably contain at least one common allergen such as lactose, casein, maize or wheat starch (the latter two designated gluten free, of course, but are anything but – they should be called gliadin free as that is what is tested for, but don’t get me started…)
Don’t forget creams, sprays and liquids either – and think especially about new things you may have prescribed for a temporary issue. Out of the blue in the conversation twice today, someone has said “Oh, yes, I have been on antibiotics/taking an antihistamine/using a thrush cream for the last week.”
I can’t say don’t use the meds; some are crucial for you, of course. But if it contains an allergen, espcially a grain, you do really need to consider it carefully as it will most likely kick off your gluten symptoms and certainly, even if you don’t feel it, will be enough to start the immune/inflammation cascade in the gut and wherever the barriers have become hyper-permeable.
Finding TrulyGlutenFree Medicines
1. Ask your pharmacist if you can look at the patient information leaflet and check the ingredients list for overt glutens (maize starch) or potential glutens (sorbitol, citric acid, glazes etc, see the corn list in the TGF book or Barrier Plan) when you take your prescription in or go to buy something.
2. If you find a problem, ask the pharmacist if there is a non-allergen alternative they can get. If they have it in, check the leaflet again with them, if they don’t, check the patient information leaflet on screen. If they haven’t got it, I use www.medicines.org.uk. Pharmacists are more well-versed in this than GPs.
3. If none is routinely available, then go and see your GP and ask if they can recommend something else. Bear in mind that unless your problem is a diagnosed IgE allergy, they can be a bit dismissive and you will need to stand your ground.
4. If nothing is available, ask for a ‘special’.
Specials – A Route to Gluten Free Meds
Special medicines are available via the NHS or paid for privately via the Specials Service where meds can be made up according to individual need rather than Big Pharma out for as much profit as they can get (sorry cynical Micki took hold of the keyboard there..).
In reality, most GPs and pharmacists have sadly never heard of it. But it DOES exist. The question is whether the GP will play ball and write you a prescription for a drug that will probably cost a lot more than the usual one and will come out of their surgery budget.
Rather than reinvent the wheel, I refer you to a recently updated article on Obtaining Free From Prescription Drugs by FoodsMatter. This explains in full the service, where to refer your GP/pharmacist to for info if they look at you gone out and lists the specials services you can call. Remember, though, you can’t order them direct; it has to be on an official doctor or dentist prescription.
One extra point I would make is that often I have heard ‘we need a filler and we only have corn starch’. Ask them if they can use any of these: Coconut, tapioca, cassava, arrowroot, even nut or seed flour. It’s just used as a bulker usually.
And don’t forget about the bum drugs. Make like other (more sensible) Europeans and choose suppositories which tend to have just palm fat, the drug and very little else.
This service sounds like a dream come true for us, doesn’t it? Sadly, judging from the experiences Michelle lists at the bottom of her FM article, it is anything but easy to get hold of them which I think is downright disgusting. However, the service is there, we do help pay for our NHS and we should be entitled to medicines that heal and not harm. Isn’t that the Hippocratic Oath every doctor takes: first do no harm? Quote it if you need to!
Good luck – and don’t forget to check your labels!!