"new" to CD

Hi everyone. I apologise in advance for the following long explanation and I really hope to hear your opinions on this soon. My sister suffered a variety of symptoms from a very young age, spent long periods of her childhood in hospital, went through numerous and different treatments because doctors at the time just did not know much about CD. She was diagnosed with CD when she was 25, after spending nearly two months in hospital during her first pregnancy: she was hospitalised because her condition degenerated when her legs started to swell beyond limit and about three weeks after hospitalisation water got into her lungs and my sister went into a coma for a few hours. Again, doctors felt out of their depths and tried all sorts of "tests", considering different possibilities from diabetes to epilepsy. So it was a great relief for everyone when the correct diagnosis was finally found - by the way, baby boy was born healthy and strong :) - . Close family members had the appropriate blood test as well and from the results it seemed that no one else in the family had CD. This was about sixteen years ago. I am now 41 years old and my health has somehow gradually started to "weaken" especially in the last 10 years or so, but I've been blaming the change of climate and different lifestyle for this (I came to live in the UK from Italy about 18 years ago). However, it's been mostly in the last four years that I've started to suffer symptoms such as bone pain, anaemia, lethargy, bloating and, in the last year especially chronic stomach-related problems, not to mention depression, anxiety, agoraphobia etc. Anyway, what worried me most were the stomach-related problems, as there is a family history of colon cancer from my mum's side. However, after undergoing a colonscopy, I was reassured that everything was fine...but I still had the same problems! Finally GP also wisely advised me to have the appropriate blood test for CD, which showed a high level of antibodies to gluten components. The test was repeated twice and gave the same result. My son was also tested and his results were fine. My concerns are: I was told by the GP to stop eating gluten and was referred to a specialist. I have been on a gluten-free diet for just less than a week and will see a specialist in about two weeks. I thought that a definite diagnosis for CD is not given until an endoscopy and biopsy are completed as well? In which case, shouldn't I carry on eating gluten? Also: as the blood test I had about 16 years ago did not show any sign of CD, I am now doubting about my son's results, as he does complains about strong abdominal pain and cramping, fatigue, nausea and although his symptoms are not persistent and recurrent, I wonder whether it would be a good idea for him to repeat the test. Any opinions/advise are very welcomed! ;-)

13 Replies

  • If you can cope stay with a normal diet until after you have had a definite diagnosis. If you go onto a gluten free diet before your endoscopy there is a good chance you will never have a definitive diagnosis but the more nebulous 'Gluten Intolerant'.

    Call me paranoid but I believe the NHS prefer it if you are diagnosed as 'Gluten Intolerent' as you will be unable to have your gluten free foods on prescription.

  • Many thanks for your reply Kim1950. That'sexactly what my sister and my mum advised me to do. Strangely enough, I have already been prescribed gf foods, so I believe that the GP based his decision mostly on the fact that my sister has CD. I think I need to ask the GP about this...as everyone suffering my same symptoms, all I want is to get better, that's why I did not "question" the GP's decision straight away. Thank you again

  • Hi Angelias, I agree 100% that you should keep on eating gluten until after the biopsy and the gastro confirms CD. The are many benefits to being diagnosed with CD as you're then in the system then, so you should have an annual blood test + have other options like a Dexa scan for bone density.

    And if you are formally diagnosed you know for sure and this is important on a psychological level as you know that you have to avoid gluten full stop.

    Now as for your son many coeliac appear to grow out of having CD during adolescence this is due to the hormonal changes going on in their bodies, so my opinion is to bear this in mind and keep an eye on him.

    Lastly it sounds as if you have a good GP who is treating you well even though they may have prescribed gf food prematurely. So good for you and let us know how you get on as you're in good company on here.

  • Hi Jerry. Many thanks for your reply and very valuable advice. The information you mentioned there are really useful indeed. My doubts about carrying on eating gluten still persist however: I spoke to my doctor again this evening and he said that the specialist may decide not to prescribe a biopsy...I have had the impression that my diagnosis is more or less complete...and the GP advised again to stay on a gluten free diet. I have decided to do so for the next two weeks and to wait for the specialist's opinion. Should she/he decide that I don't need a biopsy - considering that also my sister has CD -, then I'll just have to hope that the gf diet works...I've heard that adults may need to wait 6-12 months to see real changes in their health...sounds like a long wait but I'm sure it will be worth it! I'll keep in touch and let you know ;-)

  • Hello Angelias, All the advice given here by the others is good advice and well worth taking note of. One thing I would add is that everyone is different and we all have different responses to a gluten free diet including the time it will take for your body to give you feedback (or heal) after going gluten free. My own experience is complex and it would take far too long to explain it all here (and I would not wish to bore everyone to death {ha, ha!}) but it has been over 17 years since I was told to go gluten free and I remember it like it was yesterday, just a few days before my 40th birthday. Initially my reaction was total disbelief that any food could do so much damage, cause so much pain and generate so many different effects on the human body, but I very slowly discovered that indeed it can. In my case, the time it took for me to feel only sightly better was initially a couple of weeks and this was primarily related to the chronic gastrointestinal problems such as diarrhoea, indigestion, gut pains and constant food regurgitation. However, with the benefit of hindsight, it was several years (probably in excess of five or six) before things such as the aching bones, bleeding gums & orifices, mouth ulcers, skin problems, brain-fog, back problems, food cravings, weight stabilisation and muscle spasms, to name but a few, were to show signs of significant improvement. As I said we are all different, so my degree and depths of gluten related damage may not be the same as yours, but the point is please do not expect instant results, be patient and don't give up nor get too disheartened. It will take time to notice significant effects of the gluten free diet, but believe me, it will be well worth the effort! Also, you will find that sticking to fresh healthy and whole foods can work out to be fairly inexpensive to live on, don't rely too much on the commercial processed foods which are usually pricey. Although being of Italian decent obviously pasta based carbohydrates will still need to purchased, but other than that stick to fresh whole foods and the "GF" diet can be inexpensive to adhere to and very healthy. Finally, as you now live in the UK I would recommend joining your local Coeliac group (see: coeliac.org.uk/get-involved...) as it can be very supportive and helpful to the newly diagnosed. ~ BFN & Good luck with your new GF diet and best wishes for a new found healthy future. (24 Sep2015)

  • Dear Curiosity7,

    Many thanks for your kind and really reassuring reply. I am very glad that a gluten free diet has made so much difference for your health and daily life. I cannot but agree on each point you mentioned there...especially about the commercial processed foods. An Italian friend of mine makes gluten free pizza for her daughter but it took her a long time and endless "experiments" before getting a good result. I'm not sure if I'll find the time and patience to do it, but I know that I will definitely miss a proper pizza! :) Many thanks again and all the best to you as well

  • CD can affect us at any time. Some from birth, some in adult life. Your son is intriguing. Keep an eye on him. As he grows up until 21 he is susceptible to allergens. He may be pre disposed through hereditary routes. Prolonged exposure can make your body react.

    You and your son have to take control of your diets. Do you keep a food diary and labels of all foods tried? By a process of elimination you can work out what is safe for you.

    But do get full GF on your NHS records.

  • Hi FFNick,

    Thank you for your reply. You are totally right: CD can affect us at any age. However, due my ignorance in this regard, the recent news about my CD condition left me quite surprised...my sister was even more shocked than me as we thought that one would be celiac from birth or at least show some kind of symptoms from a very young age, as in my sister's case...she is still struggling to believe I have CD because I've always been quite energetic and healthy...apart from the last decade or so. The surprise may have made a bit "paranoid" about this, but I'm convinced that my son has CD too...which for some reason did not show in his blood results. He has some of the symptoms but only difference they are not so persistent and recurrent.. so, yes, I will surely keep an eye on him...and on our diet too! Many thanks again. Take care

  • I don't think the NHS are trying to outwit anyone by not diagnosing people, it's just incompetence combined with overinflated ego on the part of some medical professionals. It surely saves money if they diagnose people early as they can keep them out of the system later - just look how many appointments are taken up with the whole shebang of symptoms pre-diagnosis!

    Your GP hasn't followed NICE guidelines in their direction of you. Your gastroenterologist won't be impressed that you are already GF, they'll think you are wasting their time. So if you want a confirmed diagnosis I'd stop the GF diet now, get ordinary gluten bread stuffs eaten and have the endoscopy.

  • Yes, you are totally right Jacks that a definite diagnosis on CD cannot be given until a biopsy is completed and my GP was wrong to tell me to start GF diet...however, he probably based his decision on my physical condition and the fact that my sister has CD. As I am keen on getting better, I followed the GP's advice...I will see the specialist soon and I'm 95% sure that she/he will say I need to go back to a normal diet...I don't think she/he is not going to waste any time...if anything it's my time...and God knows when I'll be able to do the endoscopy, anyway. The GF diet is already making a difference in my health after less than two weeks, so at least I know it has not been a total waste of time. Thank you for your opinion and advice :)

  • You are not alone!! Lots of love. After your tests just practice when you bake or come back and we'll all help with advice am sure.

  • Hi Angelias (and anyone else reading this),

    From what I've researched, I agree with the comments so far about continuing to eat gluten and getting an "official" diagnosis. I recently got diagnosed via the antibodies test and am continuing to eat gluten while I wait (several weeks... :( ) for my endoscopy biopsy. It is weird continuing to eat something you know if making you ill, and I am struggling to cope with work at the moment as I am just sooo exhausted. However, knowing that the resolution is near and that by Christmas I should feel amazing is getting me through. In terms of eating gluten, my doctor (who has coeliac disease herself) literally told me "Make the most of it!" as although the variety of gluten-free foods nowadays is amazing, there are a few things you will miss forever... I have been eating chinese takeaway, hotdogs and crunchynut cornflakes.... (so healthy I know!) Even though I feel cr*ppy every day at the moment, I keep looking in the mirror and thinking about how awesome my skin and hair will be once I'm gluten-free and can absorb all those lovely nutrients again! I have made a blog with loads of info about eating out gluten-free and will be tracking my recovery and reviewing gluten-free foods. Give me a follow and hopefully it will make the transition easier for you (and your son?) once you have your official diagnosis :) I've made a few posts so far I will be adding to as I go, and will add some info about waiting for a diagnosis and recovery period this weekend.


    Regarding your son, Coeliac disease is 95% hereditary, which means with you and your sister it is likely he has one of the two sets of genes that can cause it (you have a 1 in 10 chance if you have a single member of your direct family diagnosed, so his chances are probably higher). The genes can lie "dormant" or "switched off" for a whole lifetime and a person will never develop Coeliac disease or have an symptoms. My doctor told me the average age of diagnosis is people over 50 and she diagnosed a 90 year old lady recently! The genes can be trigger to become "switched on" or "active" by a variety of stimuli, most commonly extreme stress or a virus. Get your son retested in case it has developed recently. He needs to be aware he is at a high risk so even if he is fine for the next 5 years and then suddenly becomes ill it is worth getting checked again. Doctors are more than happy to do a quick blood test, especially if they know you have a family history.

    Hope you feel better soon!

  • Thank you so much for your reply...you shouldn't call yourself lazycoeliac!! I'm the lazy one! 😁 ...coz you are "fighting" so bravely every day...as I said in other posts, I agree with everyone who replied to my question...I am aware that only a biopsy can give a definite diagnosis on CD...but I decided to "give myself a break"...probably the wrong choice...and lazy...and not so brave! ...Many thanks again for all the useful info...regarding my son's "case" as well. I wish you all the best and hope that all the tastiest packed-with-gluten delicatessen you'll enjoy during the rest of your "limbo" will compensate for the inevitable "side effects" 😉

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