Why are my 'coeliac levels' 'normal' yet I still feel so ill?

[Madwoman]

My consultant says it's IBS - but I feel fobbed off! I have stomach pains, brain fog, aching joints, low appetite, diarrhoea, low energy levels because I am very anaemic, etc, etc. Does IBs cause all of these .. I don't think so!

[meanioni]

Are you 100% certain you have removed gluten from your diet? Have you considered some of the less-obvious gluten components, such as Modified Starch or Hydrolysed Vegetable Protein?

No IBS does not cause this and IBS is itself a symptom of another problem.

[Hidden]

Hi Madwoman and I love your name! Can you give us some more info please? because you say your coeliac levels are normal and you are very anaemic.

I'm a great believer in getting the facts right so what other conditions do you have please? And do you suffer from diverticuliitis?

Sorry to ask these questions but your consultant must have a reason for saying that you have IBS.

Obviously if you are anaemic you will feel low and as the others rightly say traces of gluten could be affecting you. Many of us have other related conditions to CD so you are not alone.

Jerry

[Madwoman]

Thanks so much everyone for your kind replies. Yes in the past I have been diagnosed with IBS and Diverticulitis (before CD) When I saw my Consultant last week he just wouldn't accept that my CD was responsible for any of my symptoms as my biopsies and bloods are with 'normal' ranges... apart from anaemia He insisted it must be IBS! I am anaemic as usual and he has put me on iron tablets (may even have to have blood transfusion if I can't tolerate the tablets). But I am confused ... if not CD what is causing my anaemia? Just had bloods done again today before I see my dietician week after next so hope to get some ideas from her.

I try to be VERY strict about my diet but haven't considered Modified Starch or Hydrolysed Vegetable Protein as I have not been made aware of them. Was only diagnosed 2 years ago and am still learning!! Will speak to my dietician.

Thanks again x

[Hidden]

When I was first diagnosed I wanted to see what I could do for myself so didn't go the prescription route until after I had had a 2nd biopsy which showed that my villi had recovered and my iron levels had returned to normal then after introducing codex anaemia and IBS set in. So I avoid codex wheat, oats and any traces of malt.

I know that a ''normal gluten free diet'' is strict enough but if feeling better is the trade off then it's worth it in my book.

I can not tolerate iron supplements as they give me the runs big time I also have problems with many medications and I can not tolerate alcohol.

I would ask your dietician about refractory coeliac and help in fidning out if you are a super sensitive coeliac and talk to her about an elimination diet and keeping a food diary.

That's my 2p's worth. And good luck.

Jerry

[Madwoman]

Thanks Jerry - will mention this to my dietician next time x

[jpluke]

hi,luv the name because this is how I felt before I was diagnosed,have you been tested for B12 deficiency, I have been having B12 injections for 6yr now after feeling tired, terrible ulcers in mouth, I never felt better ,kept going to docs eventually someone listened to me and after biopsy I was diagnosed with CD,I was also seeing rheumatologist for years with unexplained joint pain. She apologised to me and said I should have been tested for CD when I was diagnosed with B12 deficiency I am still learning,still make mistakes,I know immedietly when I have...it might be worth asking for test good luck

[KarenHelsby]

Hello...I have had coeliacs for 16 years now....Sometimes you need to look at milk and soya within your diet also taking iron can help i use florafibre but you must ask for the gluten free one.....I am a super sensitive coeliac and man made foods are not good for us......a word of warning people i started showing signs of coeliacs again twelve months ago and they thought it was colitis....my colon had five ulcers and very inflamed......it was lactose within milk....Good Luck

[Suzth]

Are you eating any gluten free wheat starch (e.g. the codex wheat starch products from Juvela or Glutafin)?

I've been getting symptoms for a while now despite being 1 year on a gluten free diet. A couple of weeks ago I cut out the Juvela rolls I'd been eating for the last 5 months and I have been feeling great ever since.

I also found that I was sensitive to pure oats from Juvela as well.

Unfortunately nobody told me about the possibility of reacting to the above, so I've been happily scoffing them for a while now, with no idea that it could be the culprit!

I also still get some stomach aches if I drink milk, so this is another thing you may want to consider.

[Hidden in reply to Suzth]

Hi Suzth, if you are sensitive to codex wheat and pure oats then you are probably a super sensitive coeliac and you may be interested to know that Marmite is classed as gf in the UK but is made with spent brewers yeast and the Bass brewery pay marmite to remove it. Marmite is not classed as gf in all countries because of the malt used in brewing, so it might be worth bearing this in mind. And if you want any more info on foods that can upset the super sensitice please just ask.

Jerry

[Suzth in reply to Hidden]

Thanks Jerry.. I don't eat marmite, but if you know of other foods that upset the super sensitive I would be very interested to know. At the moment it is trial and error.

[Hidden in reply to Suzth]

Many super sensitive coeliac have problems with wheat derivatives. Unfortunately wheat deriv's do not have to be labelled as such. And because coeliac can get codex wheat on prescription wheat deriv's are deemed safe for coeliac so this is a minefield.

Wheat is a long chain molecule of lots of glucose molecules stringed together and when released by turning into alcohol (ethanol) it is then turned into artificial sugars.

So those on a wheat free diet and some coeliac avoid wheat deriv's like dextrose, glucose, asparatame, citric acid, caramel colours, maltodextrin is a common cause of problems for some sensitive coeliac. And dextrose is used to coat some French fries and in Australia where they have >5ppm as gf, some French fries were found to have just over this. So in the UK they would be deemed gf, as we have >20ppm (well we will have after Jan 2012)

I used to help on a wheatfree site and people who are wheat sensitive avoid the low cal fizzy drinks like the plague because of these poly alcohols dervied from wheat.

This is not a definitive list and should give you an idea of why if you have had a bad reaction to any of the above.

And not all coeliac can tolerate pure oats because of oat gluten (about 5%)

I hope this helps and if a coeliac can tolerate codex then these should not be an issue for them. And I am not saying that all coeliac should not eat these foods I just think we should be aware of what we are really eating, with the grain source of all food additives labelled as such.

So those of us who are more sensitive can make inteligent choices.

[sassyl in reply to Hidden]

Hi Jerry,

Interesting stuff. I know I'm super sensitive and have avoided wheat and derivatives for years. Of late, I've been eating a bit of codex again and am wondering if this is what has been affecting me. Just changed to Juvela Harvest Mix (gf/wf/df) do you know if this is ok?

As far as derivatives go, I had assumed (or read somewhere) that once the new labelling came in anything containing wheat had to be labelled, so if it was wheat maltodextrin or dextrose it had to say 'contains wheat' or state it was wheat maltodextrin, whereas other products could just say 'maltodextrin' with no source.

Still looking for those slip-ups as I'm still feeling under the weather.

Thanks

[Hidden in reply to sassyl]

Hi sassyl, Harvest mix uses naturally gf flours and is codex wheatfree. Some own brand supermarket cereals contain less than 20ppm of gluten from malt and these will obviously cause you prob's as will anything containing malt vinegar.

As for the new labelling laws, wheat derivatives do not have to be labelled as such because they are deemed gf. If you go to the FSA web site they state that these wheat deriv's are so processed they no longer contain gluten and the FSA say that it would cost the food manufacturers too much money to change the labelling if they change the source oif the additive.

In the US wheat deriv's have to be labelled as such and In Australia where they have <5ppm as gf they list wheat deriv's for the coeliac who are sensitive to this low level of gluten.

So once we go below 'codex' it's a minefield and I hope this helps.

Jerry

[sassyl in reply to Hidden]

Thanks Jerry

[Suzth in reply to Hidden]

Thanks Jerry - much appreciated. This will help me to identify some of the other foods that may be upsetting me

[Sparkey in reply to Hidden]

Wow! Just started using marmite in cooking and have been ill lately! I am a supersensitive coeliac so thanks for that tip.

[Madwoman]

Thanks again for the replies guys - no am not B12 deficient! Am lactose intolerant and don't eat codex wheat starch products, but do eat soya products (milk, yoghurt etc) - why would these cause a problem? x

[Jacks in reply to Madwoman]

Soya isn't the health food we're brainwashed to believe it is. It's one of those things that the marketing people have sold us - it is big business and a lot of profit involved.

This might be worth reading - especially the bit about soya being responsible for a lack of nutrient absorbtion:

healingdaily.com/detoxifica...

Also, I don't think your dietitian will have the answers for you. Like many others on here to you have to do your own research and keep notes about what you ate.

I have CD and DH and the best thing about the latter is it works like a litmus test to any gluten I might have consumed ('cause sometimes the gut pain is trapped wind.). Most recently the DH flared up after cornmeal (polenta) and a very small bag of salt & shake crisps. The polenta said GF in the shop and the crisps were previously 'suitable for coeliacs'. On emailing the manufacturers they said they couldn't claim they were GF!

On a day to day basis enzymes help me, as does taking a pre and probiotic supplement (the type you keep in the fridge). Check the ingredient list though. Lactase enzymes are a bit hit-and-miss, but I carry them just in case. I had pancreatic elastase tests and my enzyme levels were (supposedly) okay, yet I do feel better when I use them.

For me, most effective at 'inflamed' times are food combining using simple things, which I have to do this most of the time now. Some of the manufactuered GF products have dreadful ingredients - I hadn't had hydrogenated vegetable oil for 20 years - yet it's there on most of the GF foods! Some of the other ingredients, eg psyllium husk, which is used as a filler may cause some stomach problems.

Your brain fog might also be the anaemia. I don't feel great on my 633 mg/day dose, but as they are lifelong I just try and get them taken when I can an often only manage half a dose (always with substantial and suitable foods).

[Madwoman]

The article above is very interesting, but also extremely biased and has little scientific fact. I think you are correct in saying we have to do more research ourselves, but also need to be very careful not to fall into the trap of being 'brainwashed' by the way some things are written. I feel very confuse at the moment after reading articles suggesting, for example that it isn't ok to eat rice or corn. I try to eat fresh foods wherever possible and am vegetarian so make most of my own meals from scratch. Sorry what is DH? x Thanks for the reply

[Jacks in reply to Madwoman]

I'm not saying that the article is correct (there are hundreds of articles online in the soy good/bad dichotomy), you'd asked what was the problem with soy. I avoid it because it tends to give me headaches.

I know how you feel about being confused about other grains, I feel like walking around with an ELISA testing kit! On their own they are okay - it is all down to what happens in processing. Someone mentioned lentils, a packet of red ones I picked up when I was first diagnosed had a wheat allergen advice on the bag! So I'm now an avid label reader.

DH - Dermatitis Herpetiformis. My untreated coeliac disease eventually started coming out through my skin. At its worst, (pre diagnosis), it was one of the most painful things (day and night) I have ever had to tolerate - looked pretty disgusting too!

[Janey39]

I am exactly the same and I have had the tests many times and they always come back negative. Last test was only a couple of weeks ago - who knows why as I have removed all wheat from my diet, if by accident I eat something with wheat I know about it shortly but by then its too late.

I have recently found out that I have an underactive thyroid - medication is helping but still suffer with stomach ache, exhaustion etc. Have also been told I have the onset of diverticular disease - must have a high fibre diet - high fibre kills me.

I feel for you it is so frustrating to feel so ill but have no answers. I have been like this for 4 years now and drs say its ibs - i say rubbish.

I found the exclusion diet that my dietician and I did very useful. Ate nothing but bland foods for three weeks then introduce one new food a day for three days and noting down all symptoms. I now know the foods that make me ill which was very interesting as the foods I thought were safe were actually making me ill.

Unfortunately dr etc have no idea and blame ibs for every stomach thing that they do not have an positive test for. I find it best to listen to others advice and trying different things but not all at once or you will never know what makes you feel that little bit better!

[Madwoman]

Thanks Janey - good advice x

[SarahB]

Have you been tested for both types of anaemia - folate deficiency and iron deficiency? If its folate deficiency that's less of a problem, if you like lentils and spinach! If it's iron this is harder to get but again lentils and also sesame seeds (tahini, hummous?) have iron in (remember to include for eg lemon juice for vitamin C with these to help absorption and don't drink tea with your meals.)

Being vegetarian makes it harder for you to get all the nutrients you need if your diet is restricted already and your absorption might still be compromised by your CD. It's maybe worth you doing some research (if you haven't already) on which nutrients will be lower in your diet due to being meat, fish and gluten free. If there is still damage to your gut wall you might find it helps in the medium term to supplement some key nutrients, especially those harder for vegetarians to get in their diet.

There's a book i borrowed from the library called the gluten free nutrition guide, by tricia thompson, may be worth seeing if you can get a copy. It doesn't talk about vegetarian celiacs but it does have handy lists of food contents of different nutrients.

FYI I am not diagnosed as celiac but share the symptoms you suffer, and they return when I eat wheat, and go when i don't. My gastroenterologist offered me a biopsy but i didn't see the point, as i knew the gf diet was helping me.He agreed and said just keep doing what you're doing!

From my understanding IBS isn't really a cause of anything - its just a way to describe a collection of symptoms when you've ruled out all known causes. I'd be very surprised if its not caused by your CD.

[Madwoman]

Thanks Sarah - something to think about. x

[dinger in reply to Madwoman]

Hi Madwoman , just wanted to say if you are still very anaemic and you can't tolerate iron tablets , try asking your doctor for an iron infusion. I have had cd for 6years and it took ages for to get it under control. My anaemia was very bad until September last year when my doctor got me an iron infusion. I feel great now..It may be an option for you.

[swarthy]

Apparently, according to others on here, some products do contain what should be tolerable levels of Gluten for many Coeliacs - but those that are more sensitive could still have problems.

I've found Gluten to be 'hidden' in products I would never have imagined - therefore reading every single package is imperative.

My Docs too tried to diagnose everything from IBS to "I don't know what! - but there is no doubt my problem is Gluten - I guess I am fortunae that I don't have a problem wth products marked Gluten Free even if they do have a small hidden amount of Gluten in them.

Like someone else mentioned - I too have Quarterly Vitamin B12 jabs - I can't even begin to describe the level of exhaustion before I started having them - now I know when I am due one because often I can barely keep my eyes open (although it still takes my OH to remind me I am due an injection and he is always spot on).

Coeliacs can also suffer Folic Acid deficiency which will make you exhausted.

I also suffer from Iron deficiency anaemia - this is s lifelong problem, and have no idea whether it is related to coeliac or not - but certainly all three defiiciences can make you feel the way you are, so might be worth asking your GP for some blood tests.

[violetkathy]

I can't tolerate Codex or oats. I recently had a severe reaction to polenta, a corn product. I've just come across a brilliant website which says, amongst other things, that some coeliacs may be sensitive to corn. this site is well worth a visit.

trulyglutenfree.co.uk/

[Jacks in reply to violetkathy]

Hi Violetkathy

I also had a reaction to cornmeal polenta from a bag labelled 'contains corn'. I contacted the manufacturer and they said that due to the factory processing other foods they couldn't claim they were gluten free.

CoeliacUK said they didn't know of any cornmeal that had been tested and so gluten free!

[SimplyYummy123]

I agree that you are most likely eating some form of gluten of which you are unaware. Once you are on a gluten free diet, blood work and biopsy's can be skewed.

Stop eating any form of processed food and gradually introduce these foods into your diet. This includes any canned veg or sauces, regular brand pepper bought in the supermarket, alcohol and any drinks, other than fruit juices you have squeezed yourself, or water. On any processed foods, if it states it was made in a facility that also makes wheat products, I don't buy it - too risky.

It is also possible that you are becoming allergic to dairy, not just lactose intolerant.

Thyroid is another issue, I too suffer from thyroid problems - mom, grandmother and two aunts also did - but I control this with a supplement from the health food store. I am not sure you can purchase this in the UK ... it is Thyrosense, check it out at pno.ca. Hope this helped!

Best of luck,

De