Hi guys!!! Newbie here and I have some questions!

Well, they have just sent away the test to find out if I have Coeliac's. I have a few questions that my doc struggled to answer.

Bit of background. I am 27 and have been having problems with my stomach for around 2 years. However have had some minor problems in the past. My symptoms have been heartburn, acid reflux, nausea, minor bloating, tiredness and a bit of hair loss (I put that down to dying my hair all the time). I also ate pizza last night and this morning I feel like death!!

My question are

1) are my symptoms normal for coeliacs? Are there any other symptoms that people get that aren't common.

2) Is gluten free food as awful as I am lead to believe? And is it difficult to eat out?

3) Should I start a gluten free diet before diagnosis?

If someone could try and answer my questions.

MMB

15 Replies

oldestnewest
  • Hello Mrs MonkeyBear, welcome to this site.

    Re your symptom question, whilst Coeliac symptoms are sometimes neatly boxed up in press articles the reality is somewhat different. Coealics come in all shapes and sizes. Some Coeliacs have standard gastro symptoms, diarrhoea, bloating, sickness, tiredness etc whilst other Coeliacs have no symptoms at all or experience ataxia type symptoms.

    The symptoms you describe could well fit but they would also fit with other autoimmune diseases. This is why it is important to have that discussion with your GP following your test,

    In the UK the gold standard test, following a positive blood test for Coeliacs , is an endoscopy examination where the inside of the stomach is viewed for damage caused by Coeliacs. For the blood test, and for the endoscopy you need to have been eating gluten foods regulary.

    The ideal would be for you to continue to eat gluten foods until your blood test comes back as it may be that with a positive result your GP suggests an endoscopy.

    Gluten free processed foods have improved dramatically over the last few years with much more choice available. However they are quite high in salt, sugar, fats and other additives to make them more palatable.

    Many Coeliacs also take the opportunity,post diagnosis, to start creating foodstuffs from scratch to ensure that they eat a healthy diet, confident that having made the meal at home they know it is gluten free.

  • Thanks for the advice. It is greatly appreciated. Hopefully I get diagnosed soon and can get on with my life. As a chef I am sure I can come up with loads of tasty recipes without gluten. One other thing is, my mum reckons that Coeliac's is hereditary and because no one else in my family has it, means I don't have it...Is it true!!

  • I love to cook and have been eating gluten free for more than 5 years now. I have created a web site to help others: foodchallenges.ca

    You might want to start with an article I wrote about flours: foodchallenges.ca/food-fact...

    Gluten free food can taste fabulous! From cupcakes to Beef Wellington ... the sky is the limit. As a chef, you'll have lots of fun with the creative end of it.

  • thankyou Liana. I am also lactose. yeast intolerant.

    Do you have a good bread recipe.without potatoe

    flour.

    I get reflux

    would like to get to know people in the Nottingham area

    august

  • This is a great yeast free bread recipe. You can used any type of gluten free flour you have on hand. In Canada, I have access to many flours I know you can't get in the UK.

    foodchallenges.ca/tradition...

    I'm also lactose intolerant and have many food allergies. Yes, I get reflux too and have both GERD and IBS.

    I have family in the Notthingham area! My ancesters are from that region. My branch of the family immigrated to Canada in 1923 after WW1. I was the first generation born here. Happy cooking!

  • hi i am a newbee at this was diagnosed 18months ago and its not so bad as i now cook all my own foods and as for eating out i allways ask not as i do very often as am afraid good luck with your test have you got to have camra down i did thats how they foud out i never had bloated stomach just the runs and lost weight and am much better since take care xx

  • Hi MrsMonkeyBear, It's true that there can be a hereditary link with Coeliac disease but it isn't always the case so your Mum has it half right! Some gluten free food is lovely, other bits and pieces are horrible and it's a matter of choice. Of course as a chef you will know that meat, potatoes, veg, rice etc are all naturally gluten free so you can eat really well, and much more healthily, without ever touching a "free from" product. Having said that I get bread, pizza bases and flour for my son on prescription. Good luck.

  • Hiya;

    My daughter was diagnosed a year ago and it was a minefield ! I was told to continue a normal diet until the diagnosis; due to the potential of false results.

    Some of the GF food is hit and miss, but you do actually get used to it; and as the above comment says, its much healthier ! I recomend you join Coeliac Uk website, as that is a huge help !

    Good luck x

  • Hi,

    I've been diagnosed as gluten intolerant for 6 months now. I love cooking, but am finding it a bit of trial and error at the moment. Savoury food is fine, it's the sweetie bits like cakes and biscuits. I'm interested to know how you get on being a chef! I wish you all the best in your experiments.

    I'm off to a gf afternoon tea at the Savoy which should be interesting. Wondered if I could ask the chef for the recipes if I really like the cakes and scones. What do you thing?

  • Go for it. I've been playing around with GF recipes for a while as my friend has an allergy to wheat. Found a couple of good books in Waterstones. 200 GF recipes is one of them. I make a lot of mirangues and homemade sweeties for my friend too so she can get a sugar fix.

  • Gluten free food is good; you just need to shop around. I have found that Genius bread is the best so far but I am new to this myself. Only diagnosed in August. If you like meat, veg and potatoes you are sorted. If you like sauces best to go tomato based. You being a chef will be in a brilliant position.

    Eating out can be difficult but you would be amazed how many places do GF options. You can always ask and they will often accommodate.

    From what I can gather there are so many symptoms and we are not all the same, some people only have to have a small amount of gluten, wheat etc and can be really ill.

    I think you have to get to know your own body. My dietician said you have to been really strict with the diet especially when newly diagnosed.

  • There are certainly lots of different symptons - my main one, prior to having problems with diahorea - is an asthmatic type cough, which has gotton progressively worse over the years! I've had it for 15 years & had all the std lung tests done & they didn't know the cause, then in the last few years I have had trouble with my stomach. With my doctors not coming up with anything (don't get me started on that subject!) I did loads of research & got some private tests done & it has turned out that I have a problem with Gluten & dairy. Then back via the NHS, got the autoimmune blood tests done - ttga & ema & they were positive - even after giving up gluten for 4 months (that's how long it took to get a specialist referral!) The specialist has confirmed that I am a coeliac (at the moment without the histology) - that'll take another 3 months, but that may be negative anyway since I have already given up gluten & won't go back on it just for the test, but I want peace of mind that nothing else is going on, since she thinks I have suffered from it for a couple of decades!! !

    Anyhow, the point of all this, is that there are so many different inflammatory reactions in the body with this disease, that nothing is standard. But once you give up the offending stuff - you get to feel sooo much better & it is so great to be able to breathe properly without coughing!. It is a slow road to full recovery, with 2 steps forward & 1 back but steady progress is the key.

    I also love cooking, so that helps enormously, some great cookery books are -

    Cake Angels - Julia Thomas

    Wheat, Gluten & Dairy Free - Love Foods, Parragon Books

    GF Bread & Cakes - Carolyn Humphries

    The Best GF, WF & DF Recipes - Grace Cheetham

    What I keep telling myself is to concentrate on what I can eat, as oppossed to what I can't eat & that makes it a lot easier.

  • Thanks guys. I will take all the advice into consideration. I have decided to avoid the things that make me feel really ill. Bye Bye pizza and tortilla wraps. Did go to Yo Sushi for lunch today and they stock GF Soy Sauce and their allergy listings is very clear and concise. I won't cut everything out until I'm diagnosed and being me I'm sure I will mess up somewhere anyway and nip to Subway for lunch at some point!!

    I'll keep trying out the recipes in the mean time and I might post some on here, if they all go to plan!!

    MMB

    xxx

  • You do really need to keep plenty of gluten in your diet until after your endoscopy. You don't want your gut to start healing and then for the test to be taken from a healed patch giving you a false negative. Many people find that if they cut out gluten and then have to go back on it for their endoscopy, their symptoms are worse than they were before. gluten needs to be present in every meal for at least 6 weeks prior to the endoscopy.

  • After many years probably being labelled as a neurotic female.

    was diagnosed with heliobacter infection.

    took over 15 years before coeliac dignosed.

    now undergoing treatment for benign brain tumor.lazer treatment.

    Did not realise how weak the immune system would be.

    Also Candida/ should be looked into. very simiular symptoms

    august

You may also like...