Hello all, Tina here from Gluten Free Ireland.

I just want to address something I feel might be a problem for some of us but I feel really isn’t talked about too much.
Now after being coeliac for around 14 years, I have become more aware of the effects of “wheat starch” on my condition.
You’ve probably heard of this washed starch which is added for better texture and flavour etc.
Despite the claims that it falls below the required part-per-million on many items, I have found it to be very detrimental to my own condition.
I have the skin disease version of Coeliac Disease known as Dermatitis Herpetiformis (DH) for short.
With this condition, it takes a little while longer to see the effects of being contaminated by gluten, unlike those of you who can have a very fast reaction from the “wrong” food.
So, it’s not until you look back and thoroughly check what has been consumed that you realise gluten has crept in somewhere, even if you haven’t eaten out!
With me it steadily builds up, so after one or two days I start to have the itchy symptoms connected with DH. Again, with me it is itch in one eyebrow, or at the front hairline and temples if I’ve had a small amount.
Nothing too severe but constant enough to make you scratch a bit, to check more carefully and usually finding a tiny bump that wasn’t there before which keeps on itching.
If no more gluten is ingested, the bump recedes and the itching stops, but, if I continue to eat the offending food item for say a week, these bumps increase and there are more areas of the body affected. They then become blister-like and are sore to scratch but very very itchy.
These can affect the shoulders, the hips, the elbows and the knees. Often times I get very itchy hands for no reason without any visible signs or bumps.
Looking for the offending food in these circumstances has brought me to the sad conclusion that it is the allowed PPM wheat starch in my case.
Now lots of Coeliacs this is perfectly fine or seems so but for the more sensitive among us I feel it’s a real and hidden danger.
What I find happens is I have a bread for breakfast that contains the permitted starch and that is fine, then I have it the next day and the next – after all I am the only coeliac in the house, so I use up the said loaf. It seems then to build in the system and as I don’t suffer from the diahorrea symptom, I get worse and worse skin-wise.
Around two days after, this itching I’ve described begins and only starts to ease when I stop using the bread or offending food but it can take several days or more before the rash and itching start to ease!! If it’s been a bad case and the rash is blistery, then healing takes many weeks.
The same applies to Prescription flour products which comes in two versions, with and without the wheat starch.
Baking with these ensures I start to itch so I always choose the no wheat starch version.
This has drawbacks as the wheat starch adds better texture and workability to whatever you are baking or cooking.
However, I now believe it to be more dangerous to some of us than others and to be avoided at all costs if you want to keep your whole system clear of gluten.
Some Coeliacs I’ve talked to at our events have mentioned itching to me even though they have the gut trouble rather than the DH version but don’t know what is causing it.
So I think Coeliacs who haven’t recovered as well as they’d like, should look carefully to their diets again and if you are finding that you have unexplained symptoms, itching or otherwise – make sure that gluten really has been eliminated from your food intake.
It is bad enough when we get gluten outside the home, but when we are poisoning ourselves at home without knowing then action is required.
I believe this wheat starch is more lethal to Coeliacs than is generally believed and I really want to highlight here that it might not be as safe for us as believe.
We allow 20ppm in the UK but in Australia only 3ppm is allowed. I don’t know if this would help me personally or not, perhaps I just have a real intolerance to wheat but I think it’s worth bearing in mind when you are buying, or ordering food on prescription, especially if you are still experiencing unexplained symptoms.
I went along for years after diagnosis wondering why my skin did not clear up as I was promised it would, only to find it was the simple cereal Kellog’s Rice Crispies.
Through talking to another coeliac who had been hospitalised over an attack, I became aware that Rice Crispies could be the problem – hey presto, indeed they were my trouble too. It was the barley malt flavouring in the case of the Rice Crispies. Thankfully there are lovely gluten free ones now.
So reactions can come from the most unlikely sources so I urge any of you reading this, if you have any doubts that you are not as well as you should be, or that you are sticking to a coeliac diet religiously yet not getting the results you expected – and how frustrating that is, not to mention demoralising, all this sacrifice and no relief!!! Please check your cupboards now and eliminate the wheat starch for a while.
It may well be that in each person’s case it is something else entirely but I reckon the wheat starch is a good place to start.
Like oats, you may be able to tolerate it later as you heal but meanwhile ditch that wheat starch until you know for certain that you are not reacting to it.
After all who wants symptoms reoccurring again and again if they can be avoided?
I know it’s yet another item to look out for, but who knows what sneaky damage it might do in the long term?
If you have any queries about what you’ve read here, I will be happy to help if I can. Just email me – tina@glutenfreeireland.com

This Post Has One Comment

  1. Anthony Cromby

    Hi you are right, have been eating a home made loaf for about four weeks, and suddenly discovered I had the rash from my DH back this has been controlled for years by a gluten free diet and Dapsone tablets. When i looked at the ingredients on the mix I was using to make bread I found it was mainly Wheat starch so this is what has caused the flare up of my DH, wont be using that product any more or any containing Wheat starch, Think this should be more broadly publicised to let other sufferers Know.

Tell us what you think...