Symptoms

[Glutenfree_coeliac]

I was diagnosed with coeliac disease about 11 months ago, I have been on the gluten free diet for 9 months and is not showing

Any sign of improvement i have lost 2st and am constantly feeling very sick and fatigued. Can anyone say why I'm not getting better?

[Penel]

Hi, sorry to hear you are feeling sick and fatigued. Did you get any dietary advice when you started on your gluten free diet?

Perhaps you have a problem with dairy, or the lactose part of dairy. It can occur with coeliac disease, but often clears up after you have been gluten free for a while. If you think this is a possibility, you could try giving up dairy to see if it helps.

The other common problem can be ready made gluten free foods. The additives they contain, along with the codex wheat, do not suit a lot of coeliacs. It's best to stick to plain, naturally gluten free foods, like vegetables and proteins, until your guts heal.

It might be a good idea to talk to your doctor or your consultant about this problem, especially as you have been losing weight.

Good luck with sorting it out.

[amybethbug]

I cant eat a lot of the gluten free products because they make me feel extremely ill. I've found that cutting out all processed food is the only cure. Its the worst thing ever to do but sadly the only option.

[barryd]

Might be worth seeing a homeopath. I know lots of people thinks it's nonsense, but they can do a quick and easy test for other possible intolerances.

That's how I found out about my dairy/caffeine, citrus and tomato problems, (in addition to Coeliac diagnosis).

I would think it's almost certainly some kind of additional intolerance, but you should see your doctor if you haven't already.

[Hidden]

Hi there, firstly this is sad that you are not responding to a gf diet so poor you. Now I agree with Penel about dairy and codex wheat and to add to this theme. Are you sure that you have removed cross contamination from your gf food, this can happen in so may insidious ways. And are you eating malted breakfast cereals that are below codex but have barley malt added and are you eating oats as not all coeliac can tolerate oats.

Dairy can be an issue because the enzyme that breaks lactose down in our gut is produced at the tips of our villi so until the villi recovers lactose cannot be absorbed by our guts.

So these are the things that I would look at first, I also agree about eating naturally gf foods and cooked from scratch as they will be packed with nutrients compared to processed foods.

I would also consider keeping a food diary and consider seeing a nutritionalist/dietician to ensure that you are getting a balanced diet at the same time.

What trips some newly diagnosed coeliac, me included is the fact that gluten free does not mean free of all gluten but it is within codex and can contain up to 20ppm, which on a molecular level means that you are still ingesting a lot of toxic peptides. Hence the comments regarding codex wheat and malt. As for oats we are advised not to introduce oats until our villi has recovered and then to introduce them slowly and not to eat more than 50g in 24 hours when 50g is 1 3/4 oz. So this does not sound very gluten free to me and I'm not surprised that they make me ill.

Lastly what does your Dr say and have you had a blood test showing your vitamin and mineral levels as many coeliac are anaemic when first diagnosed and many have to take vitamin D supplements and being deficient in either or both of these can cause lethargy.

So good luck and I hope that you feel better soon.

[sallydogsmum]

Poor you, it's dreadful when you're following advice and it doesn't work. Time to go back to basics and inspect your diet: are you truly GF? If you're following the advice of coeliac UK or a dietician who uses their guidelines, you may be ingesting too much gluten. As Jerry states, the GF foods are often contaminated with gluten. Many coeliacs can tolerate this, but some can't. You need to look deeper into other aspects of your diet too as many coeliacs are lactose intolerant too.

So, start from scratch. Cut out all ready made GF foods, look at labels for things like citric acid, glucose fructose, dextrose - all of these can be sourced from wheat- even though they're at a minuscule level, you many react to them (I do). Try cutting out dairy for a while (to see if it makes a difference), and I would stop drinking alcohol (if you imbibe) as even wine has 5ppm gluten in it, some cider has glucose fructose added (sadly). Make sure you're not being contaminated from other sources at home or work, keep all your cooking things away from other people's, and if you're at work make sure people aren't accidentally dropping biscuit or breadcrumbs near you.

Get to the GP and ensure you've been tested for anaemia as this itself makes you feel dreadful and is a recognised issue with coeliac diseases, get them to do Vit D levels at the same time, and top up if needed.

It took me nearly 4 years to sort out my issues. I'd followed coeliac UK guidelines, which made me ill. It was reading Jerry, Penel and others posting about these issues that made me more aware. I now eat a clean diet, don't drink (unless it's a special occasion) am dairy free and check everything for the hidden nasties.

All the best and I hope you feel better soon!

[Glutenfree_coeliac]

Yes I am still eating ready made free from foods, my diet Mainly consists of them! I have recently had an anti body check and the results were perfectly normal I am soon going to have a barium meal to see if my small bowel is functioning properly. Thank you for the advice I am now cutting out most free from foods and avoiding glucose fructose as this can have tiny amounts of gluten in

[Decodream]

Just cutting out gluten is not enough... You have to learn how to eat healthy foods not substitute gluten. I have an intolerance but it took over a whole year before I started to feel completely normal again...