feeling crap all the time

[shelly13]

I have had Coeliac D for many years now and stick to the diet but 2years ago i was told that i also had I B S. In the last 2months i have had stomach aches nearly every day, i'm tired all the time and have no energy at all does anyone have an answer!!

[Mmmm]

I have cut coffee and dairy recently and have felt a bit better.

[Lynxcat]

Hi Shelly, I'm so sorry to hear that you feel so very unwell. There are several things that I would like to suggest to you. Firstly, if the stomach aches continue then it is important to go back to the doctor's and tell him about your condition. The best way of going about this is to write everythng down (every single symptom) so that nothing is overlooked.

Secondly, take a look at the foods that you are eating. Foods from the 'Free from' aisle and foods marked 'Gluten Free' very often have a tiny quantity of allowed gluten in them - this is up to 20ppm .. and this is enough to cause problems with many coeliacs. So if this is part of your diet then try leaving these food items out. In Australia the advice now given is to avoid all kinds of oats whether they are the ordinary rolled oats or ones that are marked 'gluten free.' The reason for this is two-fold: all oats contain avenin, which is extremely similar to wheat gliadin, barley hordein, rye or its traditional name of secale has secalin ..... all of these are forms of gluten. The gluten free oats here in the UK doesn't mean that manufacturers have taken out the avenin it just means that the oats have been either grown or the oat products produced in a factory away from wheat, barley and rye products - so they are guaranteed not to exceed 20ppm of glaidin, hordein or secalin but do contain 100% of all of their avenin.

Added to all of the above, many 'gluten free' foods also contain Codex wheat starch (this is also a product that is of low gluten - up to 20ppm), however if you check the ingredients it should state if the product contains wheat starch.

Watch out for items of foods that contain maltodextrin - this is because much of the maltodextrin in the UK is made from wheat and what is worse manufacturers are legally allowed to change what item they make it from. So a coeliac could purchase a product with maltodextrin that has been sourced from corn or potato one week and buy it the following week and it may be sourced from wheat. Therefore, it is safest to avoid it.

Beers (even gluten free ones) usually have barley malt in them - the only one that I have seen so far without any gluten is Crabbies alcoholic ginger beer.

Cereals such as Kellogs Cornflakes, Rice Krispies, etc all have barley malt in them. So try something simple like Kallo brand which is totally free from all gluten.

Stock cubes - are a minefield ..... many coeliacs stick to Marigold Swiss Vegetable Bouillion powder, Kallo stock cubes, or Antony Warral Tompson ones ....

peak-nutrition.co.uk/brand/...

awtonline.co.uk/Antony_Worr...

As well as the above .. we have the added issue of lipstick, which being next to the mouth can cause major problems - (some female coelicas avoid all kinds of make-up as much of it has wheat starch as a filler ... worst offenders are lipsticks and mascaras).

I am currently using ones from the Green People - they are transparent about what they put in their products - but before I began using them I contacted them just to be on the safe side:

greenpeople.co.uk/organic-l...

If you can Shelly - begin a food diary. List everything that you eat and everything that you drink in it and hopefully it will be a way of identifying foods that may be causing problems.

I know that this is all so very daunting, but it is worth being strict with yourself to find out if anything is creating a problem. If your pains persist then it is important to see your doctor and perhaps ask to be referred to a dietician.

I hope that I haven't given you too much information at once - and I really hope that you will be feeling much better really soon.

Take care.

[Lynxcat]

Shelly, I also meant to add that about fifteen years ago I worked with someone who developed IBS. She was advised to stop eating crisps - after a week or so of not eating any, nearly all of her symptoms disappeared.

It is thought that some vegetable oils especially sunflower, rapeseed, saffloweer, canola are sometimes an irritant in the intestines and these are usually the vegetable oils used in crisp making. So this may well be the reason.

[sassyl]

Hey Shelly,

I would heed the warnings to check all food sources of gluten first. Since you have a diagnosis of IBS too might be worth looking at FODMAPs.

10 years into my coeliac (and lactose intolerance) I developed IBS. About a year ago I started following a Low FODMAP diet, given to me by an NHS dietician, and also popular in Australia. It's designed to cut down the fermentable carbohydrates in your lower intestine.

Worked wonders for me! I had to cut out LOADS of foods for 8 weeks, then began a reintroduction of different food types. I found I couldn't have any brassicas, stone fruit or onions. I'm also starting to feel like I can reintroduce lactose after 8 years without.

If you are in the UK ask for a dietician referral - there should be someone in your NHS Trust trained up for it.

[Hidden]

There are many beers that are not made from barley malt and are gluten free. Most are made from Millet and are very safe.

[SilverDreamMachine in reply to Hidden]

Hi roscoe, any chance you can advise where to get millet beer and any ones you recommend? I currently use Hambletons mail order which works but would love to try something new. It may even mimic the real ale I used to enjoy!

[Hidden in reply to SilverDreamMachine]

In Australia I buy a german beer called Schnizer Brau (spelling needs to be checked). It should be easy to get it over the internet.

[SilverDreamMachine in reply to Hidden]

Thanks roscoe, I`ll try and source some.

[Hidden in reply to SilverDreamMachine]

Was able to pick up a carton this morning. Wow excitement time. It is actually called Schnitzer Brau. Ingredients are water, millet malt, pea protein hop, yeast. All organic to boot. And above all a great taste. Try schnitzerbraeu.de

[SilverDreamMachine in reply to Hidden]

Thanks roscoe. Now if you were just round the corner rather than half way round the world I could gatecrash your party!

I have found a UK source for this beer and having read the blerb on it I think it will be similar to larger and unfortunately I`m a `real ale` fan. But it was worth a look see. Thanks again for your help

[Irene Administrator in reply to SilverDreamMachine]

SilverDreamMachine - you might find our Pinterest page useful as we've several GF beers on there, including 'ales'. Some of the beer pics link to an online supplier who some fans have used. They have a wide selection of unusual (in a nice way) GF beers. :pinterest.com/gfguerrillas/...

You might want to check out our other boards on there. We also have a GF pubs boards. Only a couple of pins I have to admit but it's a start.

[SilverDreamMachine in reply to Irene]

Thanks Irene, I`ll do some digging and hopefully drinking!!!

[AdvanceNutrition]

In addition to the comments above it is also worth pointing out Shelly that it can take many years for the gut to completely heal after removing gluten and many foods cross react too to gluten - especially dairy, corn, soy, coffee and some coeliacs are very sensitive to other gluten free grains and seeds like quinoa and buckwheat too. So I would switch more to a SCD, FODMAPs or Paleo style of eating. I regularly give talks to my local coeliac group on nutrition as a qualified nutritionist and the other key element to consider here is that you are likely to be low in certain key vitamins and minerals - lots of research to show coeliacs are low in iron, vitamin B12, folate and other B vitamins, vitamin D, K and calcium and magnesium. You may need probiotics, gut healing supplements and digestive enzymes too. I would advise you to seek professional nutritional support. Another element to consider is that there is a potential you have a gut infection or bacterial overgrowth that may be aggravating your symptoms as well. Again it is important to get this checked out. I do wish you well.

[loobylou123]

Hi, you sound like you are having the same problems as my partner. He has recently started to take Vit B12 slow release tablets on a daily basis. Due to problems with absorbtion it can be that you are not absorbing the vitamins from your food. Vit 12 is for energy, Vit D and Calcium are a must. Your Doctor can take a blood test to measure your level, to see if you are lacking. Vit B12 is available in injection form too. You also need to make sure that you do not have Barley Malt that is contained in some cereals. Be careful that you only have food that specifically states Gluten Free, some will state that it contains nuts etc and does'nt state that it contains wheat, BUT it may contain Barley or Yeast or Malt, this small amount can cause slight tummy ache and not the full blown feeling ill. Hope this helps