Silent Coeliac Disease?

[roobiedoobie]

Hiya,

Last June I started losing weight and feeling unwell,a bit of tummy ache and a little diarrhoea.

I saw my doctor and she sent me for a blood test for CD,as my brother has CD,blood test came back positive as did biopsy,during this time I was sufferring a lot of stress due to my little girl going thru diagnosis for autism.

I started the gluten free diet in October last year and felt a little better,however I hated the gluten free foods and tbh still do.

I saw my GP yesterday and told him how fed up I was of the diet and told him that I had been having foods containing gluten,yet I was having no reaction what so ever.

GP said that if I was having no symptoms he would give me suppliments to counteract the malnutrician and that I could resume having some normal gluten containing foods,he believes that what I had was IBS brought on by stress and that I have silent CD.

I spoke to the dietician today and he was a bit miffed that gluten doesnt make me ill anymore.

He also said I should carry on gluten free.

I'm so fed up of all of this,anyone had the same?

[Irene Administrator]

It's very worrying that a GP feels that someone who has had a positive blood test and biopsy, confirming Coeliac Disease, believes that it's ok to resume eating gluten containing foods as long as he provides supplements.

Many many Coeliacs never experience any stomach problems before diagnosis and are diagnosed by chance, whilst attending their doctor for a different problem. However once the diagnosis is made and they start the gluten free diet the stomach starts to repair itself and they then find that if they eat the smallest amount of gluten this produces a reaction. This can be very frustrating, especially having been symptom free prior to the diet.

There are another group of Coeliacs who following diagnosis, go on the gluten free diet and never experience any obvious reaction if they accidentally eat gluten. In this instance its very easy to convince yourself that its ok to reintroduce gluten food. The bottom line however is that whether you experience symptoms or not, if you have been diagnosed with Coeliac Disease you will be damaging your stomach and putting your long term health at risk by continuing to eat gluten containing foods.

It's good that you had a chance to talk to a dietician. I suspect he would have preferred you to experience symptoms for the very reason that it makes the diet easier to follow if you know you'll get an unpleasant reaction from eating gluten. He is certainly correct in telling you to continue staying gluten free.

You're right that some of the manufactured gluten free products aren't that nice and can never replicate some of the gluten food. But things are improving at a fast pace and the bread, which seems to be the one product that most people miss when switching to a gf diet, is vastly improved.

Which bit of the diet do you have the most difficulty with roobiedoobie? I'm sure other members of this group will have experienced similar problems themselves and found a workaround they could share with you.

[Lynxcat]

Hi, In agreement with Irene here. I do not like wagging fingers but I would say that it is dangerous to stray away from gluten free foods if you have tested positive for coeliac disease. If you suspect that you have been wrongly diagnosed then please ask for a new blood test, etc to confirm your suspisions.

It is rare for a doctor to explain all about coeliac disease and although I have no wish to upset or scare you - what you must remember is that if a coeliac eats foods containing gluten then all kinds of damage may occur throughout their bodies. It is a serious autoimmune disease and unless a gluten free diet is adhered to will most probably cause other dangerous illnesses to develop.

It is important to get things into perspective. Your health is everything and it really isn't worth gambling with. From what you say, you have only recently been diagnosed, it is difficult to take on board the thought that you have to change the way that you eat and it is difficult to believe at first. It's so disappointing and makes a person feel dispondent and fed up. We have all gone through these emotions so you are not alone. You will find that in time it becomes easier to accept that your diet has to change to keep you well and you will feel it is a small price to pay to heal yourself.

Try and stick with it - it really is worth the effort and remember you are not alone.

[barny]

i agree with lynncat i have been cd for 10 months an fell well on it the bread is not the same but if it makes u better it dont matter i cook a lot of food my self and find it so much better do hope u can stick to it its worth it i was 66 when i was diagnosed last yeay i lost a stone in wieght put it back now good luck with it any way xx

[NorthernSoul]

Telling you to go back on a gluten diet when a) you have biopsy-confirmed coeliac and b) it's apparently bad enough for you to require calorie supplements for the associated weight loss is idiotic. The inflammation is still on-going and you'll still be getting all of the risks that go along with that even if you aren't getting physical symptoms (although clearly weight loss *is* a symptom!).

To reiterate what everyone else has been saying- stick with the diet, it's worth it. Your dietician obviously knows what they're talking about so use their expertise and feel free to vent or get a few tips over on this forum if it ever feels like too much.

[Magrat]

Hi everyone, I am in the process of writing my thesis on CD and Gluten-free food. My intention is to compile information relating to food choices in the hospitality industry and food industry. During my Literature Review, I gathered quite a lot of medical information which my own GP has asked to read because as he put it 'I can't have a patient of mine knowing more than I do'.........my point is; GP's don't always have the correct information at hand to give the right advice. 'Silent CD' is perhaps the most 'dangerous' type of the disease, as it is the one which patients continually veer from the strict gluten-free diet. Please do not do this as the villi in your intestines will die off and you will be unable to absorb nutrients from your food and will become malnourished. Be also aware that currently the convenience food available in the supermarkets is mainly made with rice, tapioca and potato flour's which have very limited nutrients. Try cooking from fresh food and only eat convenience food occasionally, this is YOUR health, so take care of yourself!

[ianwoowoo]

Hi, sorry to hear your struggling. I too was diagnosed in October last year, ,itll be 6 months in few days and things are settling down for me now.

I think the main thing to remember is that there are serious consequences to not sticking to the GF diet regardless of what your doctor has said. One thing I have found is that no 2 coeliacs are the same in the way their symptoms present themselves, so you are just another variation - but the fact is you do have Coeliac Disease and it is a fact that GF diet is the only treatment. I found that my doctor and dietician didn't know very much about the condition, even after a week or two I had learnt more from Internet research than they knew.

I would suggest you look at it as an opportunity to eat a healthier diet, I found that at first I was hungry all the time and that I couldn't find enough to eat to keep me full. I've got on top of most aspects now although still crave cetain foods. There is lots of good advice on this website and there are many good sources of food ideas on the internet and some good cook books. If you treat it as a challenge to expand your cookery range then you might be able to get into a bit more. There are lots of meals that are naturally GF so it's not like having to substitute foods with GF equivalents. I decided I was going to try avoid the GF versions of old favourites such as bread and biscuits, this meant looking for alternatives and meant I have now found lots of things to choose from.

I now have a more varied diet and I now have an excuse for not eating tempting cakes and sweets when out and about which makes for a healthier me.

Good luck - but please stick at it - the cloud will lift !!

[jackieO]

I was taken aback at a meeting of Guide and Brownie leaders recently by one of the leaders who is a GP. When special diets for the event we were planning came up someone said a "friend" had been cured of her CD by the power of prayer. I balked at this and my immediate response was how can prayer cure an auto immune disorder? The GP's response was along the lines of "stranger things have happened" and the power of belief is not to be under estimated.

My own GP is of the opinion that I know more about CD than he does and as a nurse I certainly work with many healthcare professionals who know little or nothing about it so I am unsurprised by your GP's reaction.

I agree that you need some definite confirmation one way or the other that what you have/had is IBS or CD. While IBS would improve with relief of stress the markers of CD would not disappear except by remaining on GF diet. I had little in the way of gut symptoms before diagnosis but the longer I remain GF the more noticeable reactions are when I do have gluten. Press for confirmation; your long term well being is at risk if you do have CD and expose yourself to gluten regularly.

[roobiedoobie]

Thanks for all your replies.

I definately have CD,because I have had positive biopsy,it just makes no sense to me that I don't react at all when I have had foods containing gluten.

The dietician said that the way I'm feeling is the way I should be feeling at this point following diagnosis,he said the 6 month mark is the stamp your feet like a 2yr old and rebel against the diet phase.

I truely do find it so hard,I wish I could be like my brother where if he sniffs something containing gluten hes ill for days,then at least I'd have to suffer the reprocussions.

I guess I was just hoping my doc was giving me a way out of my food hell,I've been thinking about all of this and if I'm honest,I guess there are things that are good about gf,my hubbys yorkies are amazing,I've got cakes nailed,my biggest problem is lunch time,I have serious textural issues and I find the bread products shocking,and I am so fed up of eating rice cakes!!!

Thank you all again,I will take all of your answers on board

[philaustin]

This is is disturbing. Don't doctors share information about things such as Coeliac Disease? Don't they have standard procedures or guidelines to follow? You should be able to rely on your doctor giving you the correct advice, but it sounds like you can't.

There are a lot of good people with CD and good advice to be found here, even if some of them did have their photo's taken with the flash on their camera not working . Regarding bread: Its the first big problem we all come up against. ( The second big problem is no beer) . Most of us have found bread that we like. Some swear that they can make GF bread that is superior to any that can be bought.

My own personal preference for bread is Glutafin baguettes and livewell burger buns. If you need to watch your weight you have to be careful with GF breads as some are high in fat and sugar.

I think I've cracked the beer problem now; I just learned from the Beds n Herts Coeliac Group that theres a home brewing shop down the road from me where I can get a 40 pint home brew kit for 25 quid!

Regarding rice cakes; they are the devil's work. Throw them away. Take a tub of salad for lunch with a healthy dollop of low fat dressing.

Don't give up. We're all in this lifeboat together!

[FionaGFG Administrator]

So true Phil!

Hey roobiedoobie do not give up. Here's the thing when I was diagnosed there was only GF food on prescription (tasted like sawdust!) or frisbee style cardboard bread in the supermarket. Then 6mths into the GF diet and all the jacket potatos and salad I could eat for lunch and I discovered Genius bread. It wasn't like real bread but it was the best GF bread by far. Sadly the recipe seems to have altered as they have rapidly expanded so I no longer eat it.

However, I can say that my personal preference for the best GF breads are: Sainsbury's seeded brown own brand loaf & Warburton's Brown bread. Both are lower in fat than other brands and if you freeze them then just throw them in your own separate gf toaster as you need them in the morning they are fine. I admit I've only ever made a GF sandwich about 3 times since being GF. They just don't seem the same especially as the loaves are so small. However, what I do do is cook my GF lunch the night before e.g. curry & a bag of microwave rice fills me up till late in the eve when I get in from work. Or I zip out to POD or local GF cafes where I'm sure they do do GF food (I always talk to the mgr and try and order safely ie omelette). Amy's Kitchen in the frozen section of many supermarkets also do some great gf ready meals that you can defrost in the mornings and then have at work. I also don't get very obvious symptoms when I'm glutened and it can be annoying as it's easy to doubt the diagnosis or wonder whether you can cheat and have that pint of Guinness or favourite GF food. However, I see it as a some kind of virtual tally chart in my head and the more days I am GF the more I know I'll get better.

I agree with Phil though rice cake's are the Devil's work - pah like pure polystyrene! Instead try corn things - they taste pretty nice: cornthins.com/ Also see our other page here with some of our favourite products and food recipes: pinterest.com/gfguerrillas/

The knack is always having a gf snack like an apple/ banana on you so you never feel so hungry that you give into temptation. And believe me whatever you're feeling like we've all gone through the same stages. The plus side is your dietitian seems really supportive and switched on! So do get the best advice from them that you can.

[roobiedoobie]

Ok...just to make me realize what I need to do,I've just been told that my blood results are back in and my iron level is 3,so doc says granted no outward symptoms but the damage is obviously being done.

Thanks again everyone.

Roo

[FionaGFG Administrator]

Here's some inspiration on GF recipes and GF beers (!) that taste decent on our other page: pinterest.com/gfguerrillas/