My coeliac disease diagnosis story - Gluten free life
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- เผยแพร่เมื่อ 15 พ.ค. 2020
- One of the main reasons I wanted to start writing my own blog was to help raise more awareness about coeliac disease, as currently it's a very underdiagnosed autoimmune condition, which unfortunately left undetected and not managed can lead to severe health complications.
In this quick video, I'm just chatting through what symptoms I had and how I was fortunately very quickly diagnosed with the condition thanks to my GP being completely on it.
I have also written a post on my site dedicated to the subject 'symptoms of coeliac disease' which you can check out by clicking on the link below www.coeliacbydesign.com/sympt.... But thought it would be good to share the list of symptoms from the post on here too.
I have checked out reputable sites to give you a run down on some of the most common symptoms of coeliac disease, adding in ones I have learnt about along the way too:
Recurring abdominal bloating and pain
Chronic diarrhoea/constipation/excessive wind
Irritable bowel syndrome symptoms (all bowel related conditions must be ruled out before an IBS diagnosis is confirmed)
Nausea
Vomiting
Decreased appetite
Recurring mouth ulcers
Pale sores inside the mouth
Tooth discoloration or loss of enamel
Liver and biliary tract disorders (transaminitis, fatty liver, primary sclerosing cholangitis, etc.)
Weight loss (but not always, some people gain weight)
Pale, foul-smelling stool (which often float and can remain in the water even after flushing)
Iron, vitamin B12, or folic acid deficiency
Anaemia that does not respond to iron therapy
Fatigue
Failure to thrive or short stature (commonly in children)
Delayed puberty
Pain in the joints
Tingling numbness in the legs
A skin rash called dermatitis herpetiformis (DH)
Unexplained infertility, recurrent miscarriage
Osteopenia (mild) or osteoporosis (more serious bone density problem)
Peripheral neuropathy
Neurological (nerve) problems such as ataxia (loss of coordination, poor balance)
Psychiatric disorders such as anxiety and depression
Hair loss
Headaches
Quick thing to add, is that some people with coeliac disease experience no symptoms at all and that why family screening is so important when a family member is diagnosed with CD.
I'm not medically trained and would advise anybody with any of the symptoms above (or any other things of concern) to chat to your GP. Discussing with them the possibility of you having coeliac disease and requesting that you are tested to rule it out. Always communicate with your GP until you get to the very bottom of what is causing you a problem.
Currently an accurate test result for coeliac disease can only be given if gluten has been included normally within the diet for 6 weeks prior to a blood test and endoscopy. And as coeliac disease can manifest at any time, a previous negative test does not mean that you have not since developed the condition.
To help others, and raise more awareness about the varied symptoms of coeliac disease, it would be great if you are able to just jot below your own experiences.
Take care
Liz x
Email - liz@coeliacbydesign.com
Blog - www.coeliacbydesign.com
Facebook - / coeliacbydesign
Instagram - / coeliacbydesign
Pinterest - www.pinterest.co.uk/coeliacby...
I love 💗 your channel and listening to your story was really interesting… over the last 5 years I’ve realized that every time I eat bread, pasta any kind of rice or the delicious buns and scones I see in the supermarkets I was always tempted to buy but the days after eating I always felt so poorly with sickness and cramping pains at the bottom of my stomach not realizing it could be the gluten and wheat my friend told me the same thing… doctors never found this out… it was ruining my social life as well, so I decided to follow your channel and try my own baking and it’s been 7 weeks now and luckily I haven’t had any pain or cramping at all… so thank you so much for sharing and making your videos… you are amazing ❤️😘 xxx
Thank you so much for leaving such a lovely comment. I’m sorry that you hadn’t been feeling great, but it’s good to know that you’ve responded well when you’ve made adjustments to your diet. Ideally it’s always best to rule out coeliac disease before reducing or cutting out gluten from you diet, as should you have the condition you would require additional medical support and also as it’s hereditary it allows other family members to get checked out too. Currently coeliac disease can only be accurately diagnosed if gluten has been included as normal within the diet 6 weeks prior to testing. I would suggest having another chat with your GP. He may suggest that you do reintroduce gluten to test for coeliac disease. If this is something you couldn’t do as it may make you feel too poorly, then I’d definitely recommend that you follow a gluten free diet as if you have coeliac disease to safeguard your tum. I’m of course not medically trained I just share the bits and bobs I’ve learnt along the way since being diagnosed. I hope that you continue to feel tip top and should you not, do get in touch with your GP to chat things through. Thanks again for leaving such a lovely comment, it means a lot!! Take care xx
Lovely video. I'm a Celiac to but have a very rare form called Refractory Celiac Disease and its a terminal disease eventually as it wasn't diagnosed early enough so I carried on with my normal diet. So please don't ever be tempted to cheat as its nasty. New subscriber to your channel ❤️
Lady Likeables I’m so sorry for your late diagnosis.😢 Sending you magical wishes.✨ You are so right about the importance of not cheating. It’s lovely that you have subscribed to my channel.....thank you so much. 🥰Look forward to sharing more bits and bobs with you soon. Take care x
Sorry, about your late diagnosis, that’s really tough. I had no Idea CD could be that serious.Your 100% right it’s a must to follow the GF diet. I’ve learnt the hard way the pain just isn’t worth it. I’m very careful at home, but eating out has been a problem I’ve been glutened many times, even though I go through the whole spool. Many people don’t get the cross contamination side of preparing food for celiacs.
Thanks for this video, the more we hear and talk about CD the better. Thank you Lady likeable for your story. I wish you luck and I hope something comes up in the medical field to help you.🙏
Me too ❤❤❤
Hi. I just found your channel and I love it. I'm going to bake almond tart and dutch cookies. Not for myself (although I'll probably try it too :)). For my 10-year-old son. Due to autism, he has been on a gluten-free and dairy-free diet for 7 years. There is no diagnosis of celiac disease. But he has symptoms similar to yours - if he eats something inappropriate, he has cracked and sore corners of his mouth, swollen, itchy lips and around his mouth, a rash on his back, tummy and arms. After all, digestive system ailments begin.
You are right about gluten-free products in stores, there are a lot of them now, even comparing what was 7 years ago-almost nothing. But many of them contain additional ingredients, various types of cellulose, preservatives, glicerin, artificial dyes. The healthiest thing is what we cook and bake at home. That's why I'm constantly looking for new recipes and that's how I found your videos :)
I wish you all the best and wave to you from Belfast :) 👋
Aww thanks for your lovely message!🥰 I hope your son enjoys the almond tart and Dutch cookies. Sending you and your son my very best wishes. Please do get in touch if I can offer any further help. Liz x💫
I'm so glad I found your channel! The recipes look fab :) I'm just discovering the possibility of coeliac (or gluten sensitivity) unfortunately I'd already gone gluten free before my blood test as I didn't know not to so I'm not diagnosed. But I have a very clear symptom diary and have slipped up on two occasions where I didn't realise gluten was in the food - tonight I had soy sauce and boy have I been rough - which is why I sought help and hope on here! thank you for sharing :)
Aww welcome! So glad you like what you see so far.🥰 Such a shame you’ve missed out on getting an accurate diagnosis for coeliac disease. I’m forever hopeful that a test will become available that can determine the condition even when gluten has been removed, as there is so much more to living with coeliac disease than following a gluten free diet. It is possible to have a blood test which can determine if you carry the gene that’s required to develop coeliac disease. This test can be carried out at any stage. Whilst it won’t confirm if you have coeliac disease (not all people that carry the gene will go on to develop coeliac disease) it will confirm if there is a possibility of you having the condition. Maybe have a chat with your GP to see if they could run the test for you? I would also see if they could refer you to a dietitian who can support you with your gluten free diet. Good luck with everything and don’t hesitate to get in touch if you feel I can be of help to you in any way!
Best wishes
Liz x
Ah Liz, such a kind and thoughtful reply, I really appreciate it. I was looking at my genes today (as you do!) - I’d had them done on Ancestry for family tree research- anyhow, yes, I have 5 of the 6 genes associated with coeliac. I also have other auto immune conditions, so it’s looking likely. Thanks so much again, I have a GP appt friday so hope to ask questions then 👋🤩