To "App" or Not to "App": The Use of Gluten Free Product List Computer Applications

Hi Amy,

I've come across your blogs on adherence, and thought it might be interesting to have a look at an article reporting adherence levels (to the gluten free diet) of diagnosed celiacs.

There are no groups, no associations here. What can we do?

I live in Kampala (Uganda), I have celiac disease, I was diagnosed in Belgium when I was about 7 years. I have tried to stick to gluten-free diet. However, the risk of contamination and temptation of cheating the diet are extremely high. There is no choice for celiacs in Kampala.....or maybe I am the only one.

I know this sounds unbelievable but its no different with people that smoke & know the outcome or people like me that are morbidly obese & have a gluten intolerance & cheat all the time.

Plus my gluten intolerance affects my peripheral neuropathy & I live in constant pain from what I eat. It may sound crazy to know this can kill you but it never stops people with addictions from stopping.

I was a diagnosed Ceiliac at the age of one, and stuck to a strict diet till the age of 16.. I never realized the dangers very recently after putting on weight and not suffering from any of the other noticeable symptoms (until now) I am 40 in April and only recently started to suffer from dermatitis herpetiformis which is horrible. In fairness it has woken me up and am determined to stick to a gluten free diet from now. I will say to anyone reading this, it may seem like you are not suffering, but it will catch up with you.. I am in the process of changing my life back to a gluten free diet. I will update you as I go on.

Hello

I am living in Jinja Uganda at the moment and I agree it is difficult but if you have access to an oven you can make bread using the copious amount of gluten free flour available. I do not have a oven so I make pancakes with the flour from the baby porridge or rice chapati. Soy/rice or Soy millet is fine to eat. Also if you ever come to Jinja. There is a nice cafe called Indulge that has gluten free crackers, licorice, brownies and chocolate. I hope this helps.

I was diagnosed 3 years ago with coeliac and ulcerative colitis, a started the gluten free diet but with having family it made it hard to follow am worried now with me not sticking to the diet !!

Debbie,

I think you are comparing apples and oranges. I'm sure you are aware people who smoke don't need to smoke to live, correct?

However, everyone must eat to live. Big difference.

I've had coeliac since I was diagnosed under 1 year old. I'm now 39 years old and I yes, I do cheat from time to time. It is an extremely difficult diet to keep to when you are growing up and everyone else is eating pizza and cake at parties. I was often found hiding behind curtains with the giveaway of crumbs on the ground below. Maybe I have an addictive personality & they do say that eating gluten in a coeliac can increase saliva production and make you crave more.

But until you are coeliac you will never know quite what it is like to not be able to have what everyone else does. Now I am savvy about food, a good cook and eat a range of foods that I like which hugely make up for the fact I can't eat the gluten foods, for example sushi, taco shells (gluten-free) with chilli, baked pots, rice & vegetable pasta which is by far the best. But because I'm adventurous I want to try pitta breads stuffed with salad & however much I try & get ones that work they always fall apart and I don't get the same experience as everyone else. & I would still love to see ready made gluten-free pastry so I could make a pastry dish with mozzarella and spinach on top.

I got out and want to get something healthy, it is either hugely expensive or there isn't anything, the other day i opted for chips but I would rather not have. Look, the list goes on. I know I've had this condition for 38 years and I can still find myself eating the bread next to the soup if I haven't been ultra organised and brought something to go with this. I know I should eat before I go out but that doesn't always work.

Finally, I have struggled with gluten-free bread since the beginning, those drying breads that used to be in circular tins and make some sort of paste in your mouth so you had to drink water to swallow. The new breads on the market are much much better but there are substances added which upset my stomach. I have found one I like currently, a new Glutafin brown bread, fresh & it even has seeds in it & is doesn't land in your tummy like a brick.

I've given up gluten-free biscuits because they are so high in fat content I might as well eat a chocolate bar and gain the pounds than one biscuit.

For me it is a hard diet & I know I should be grateful I don't have something much harder to follow or have severe allergic reactions too but I can't help crying out like I did when I was a kid, I want to eat what everyone else does! & I don't mind the feeling of always wanting to sleep just for that occasional cheat!

I just wanted to thank you for writing this I was diagnosed with celiac disease February 10 of 2011 and I followed my diet until I had my disease under control and now that it is I have gone back to eating whatever I want and it is hard but after reading this it has scared me knowing what can happen that I am going to follow my diet again. Since I have gone back to eating whatever my stomach is in a lot of pain like it was before. I thank you for helping me.

I think what debbie is trying to say is that food like smoking or drinking can be addictive, I know that by eating cakes and sweet foods that are full of wheat that I am doing long term damage but the urge (very much like an addict) is hard to curb, I was diagnosed 5 years ago, its very hard to change a habit of a lifetime.

Although a lot of the coeliac foods like pasta are very good there are no replacements for rolls or bread, I have been buying and baking my own for 5 years now and just cant match bread made with wheat, I feel so guilty when I cheat my diet but after spending 25 years of eating what I liked it was hard to cut out my Favorite things with no alternative! I think for a lot of people, me included, the long term effects of eating wheat and gluten are not yet taking their toll on our bodies or affecting our lives so until then I feel a lot of people will still cheat, there is too much temptation out there to do so and not enough negatives to stop us from wanting too.

Udi's brand bread isn't bad. My son likes it and it is better than any we have tried. He has a hard time not getting into wheat too. I agree that until it hurts their body it is hard for them to make the connection and go gluten-free.