Are you Still ill on a Gluten Free Diet?
If you’ve been diagnosed with coeliac disease and have been following a gluten free diet the chances are that you are feeling a whole lot better. But what if you are still feeling ill despite sticking to your gluten free diet?
I’ve now been following my gluten free diet for 1 year and there has been a massive difference in my symptoms. Right before I was diagnosed I felt ill most of the time and often could do nothing apart from lie down. You can read about my coeliac disease symptoms in this post.
Now when I do get symptoms, they are a lot milder, but I’ve been feeling frustrated because I do regularly get symptoms, despite being 100% gluten free. Over the last few weeks I’ve been eating as naturally as possible, avoiding prepackaged foods and I am starting to make discoveries of things that I am sensitive to such as codex wheat starch and pure gluten free oats.
If you are still ill on a gluten free diet here are 7 suggestions for you to help you get to the bottom of the problem. It is a little bit like being a detective in a way! I’ve written these in the order that I think you should look at them, but do bear in mind that I do not have any medical knowledge or qualifications so be sure to visit your doctor if you are worried.
1) Have you Given it Enough Time? When you were diagnosed with coeliac disease there was probably a good chance that your body was under a lot of stress for many years before your diagnosis. For this reason you can’t expect your body to make a full recovery within a few weeks. It is more likely to take a few months or even years in some cases. Allow time for your villi to heal, your vitamin levels to get back to normal and the inflamation in your body to calm down. I often see people in coeliac forums complaining that they don’t feel better within the first few weeks, and I get the impression that this is perfectly normal. I feel a big difference between how I felt at 3 months gluten free, compared to 6 months, compared to one year.
2) Cross Contamination? This is probably one of the biggest reasons for still feeling ill on a gluten free diet. It takes just a tiny amount of gluten to set off a coeliac’s immune system. I’ve read somewhere that this can be as little as a one hundredth of a breadcrumb! Are you eating out a lot? Do members of your family consume bread, cakes and other gluten laden products in the house? Do you kiss your significant other after they have consumed gluten filled products? Are you using the same wooden chopping boards or wooden spoons that have been used for products containing gluten? Have a think about these things and see if there is anything you can do to eliminate cross contamination. My husband has very kindly gone gluten free in the house with me apart from an occassonal pizza and beer. This means that I do not have to worry about gluten contamination at home and he can still eat pastries and sandwiches to his heart’s content while at work! This might not be practical for you, but you may be able to make your home safer for you by using a separate area to prepare your food.
3) Vitamin Deficiencies? It is common for people with coeliac disease to have some vitamin deficiencies when they are diagnosed. Examples of this include iron deficiency or B12 deficiency. This is because food is not absorbed as well as it should be when you have damaged villi. If you’d like to rule this out you can ask your doctor for a blood test. You may need to take some vitamin supplements for a while to get your vitamin levels back up to normal.
4) Codex Wheat Starch? If you are in the UK you will probably receive a prescription for staple gluten free foods such as bread, rolls, crackers, pasta and so on. Some companies such as Juvela and Glutafin use codex wheat starch in their products. This is wheat that has had the gluten washed out of it so that it contains less than 20ppm (parts per million) of gluten. This should be suitable for most coeliacs, but some people (including me) have a reaction to this. Unfortunately there is conflicting information about this online. For example the Coeliac UK website says that gluten free wheat starch is suitable for all Coeliacs. Glutafin on the other hand say “a small percentage of people have been advised by their dietitian to eliminate wheat starch” – see the full article here. I also found a thread on Facebook where numerous people have stated that they cannot tolerate this. I’d been eating Juvela rolls for 5 months before I discovered this. Eliminating them has reduced my symptoms a great deal.
5) Gluten in Cosmetics? Do you wear lipstick? Or do you use face creams? Although it is not possible for gluten to be absorbed through the skin, it is possible to lick your lips after applying makup or cream, or to put your fingers in your mouth after applying body lotion. Many cosmetics contain wheat – often listed as triticum vulgare. If you are a coeliac, it is probably best to avoid using these products. I discovered that my clinique lipsticks all contained wheatgerm and many of the body lotions and bubble baths that I used contained wheat. Thankfully I have not found any wheat based ingredients in my favourite cosmetics – Clarins!
6) Another Food Reaction? Could you be reacting to another food? Many coeliacs are unable to tolerate dairy products because of the lactose content. This is because the villi secrete lactase, which is necessary for digesting the lactose in dairy products. If your villi are blunted as a result of coeliac disease, they may not secrete enough lactase and you might find that drinking milk gives you bloating, wind, nausea or stomach cramps. This may get better as your villi heal up. At the moment I know that I am reacting to something else in my diet, but I am not sure what. I’ve started to eat a diet that is as natural as possible, i.e. no foods from packets or tins, just meat, fish, fresh vegetables, herbs & spices. When i’ve felt good for a couple of weeks I’ll introduce something to see whether or not I react to it.
7) Another Autoimmune Disorder? People with coeliac disease have a higher chance of having other autoimmune diseases. For example auto immune thyroid disease. If you suspect this, be sure to visit your doctor as you can get a blood test. Things like an over active or under active thyroid, or diabetes are easy to diagnose through blood tests.
I hope this helps you if you are still ill on a gluten free diet. Please leave me a comment if you can share anything that has worked for you.
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