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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

EmmaFromLondon

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EmmaFromLondon last won the day on March 18

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  1. Thanks for the welcome JMG and likewise vis a fellow Brit - I think I might stick around And Sarah, you honestly have SO much scope for hope (no rhyme intended!), you really really do, you are RIGHT at the beginning of your recovery and I can promise you from my own experience that stuff really DOES shift. Am labouring that point as I know just how vital 'hope' is and you genuinely are able to have it in spades, if you're already seeing improvement just one month in then Lord knows how much scope you have for improvement in 24 months. The other thing it's vital to always keep front of mind IMHO is that we really are the 'lucky ones' - it's the poor sods still being dismissed as having IBS, or 'balance' problems, or 'nerve' problems yet are no closer to finding out their actual truth that I feel horrendous for. One last thing, no clue if you have it but if you do have brain fog I would utterly recommend downloading the Words With Friends App - it helped my brain start to have to focus again as well as driving engagement with others; something that was lost when I was lost. Am so glad I happened upon your post and I hope that my post is of help to others when they are looking for answers as I know most simply do not have access to the skill of Dr H and the hope that that knowledge gifts them. JMG, one last thought - have you thought of doing the York Test? It's a bit pricey but very well worth it IMHO, ESP if your bloods are showing elevated inflammatory markers (CRP and ESD, former esp as can directly rise in response to ongoing Ig responses in body). Bit of a pain then needing to trial excluding other foods from diet when already tad restricted by celiac disease but what price health, freedom, and energy? I'd rather be on a restricted diet but able to paddle board than eat whatever I fancied but be sofa/home bound!!!
  2. Hi Sarah. Ok, so just how RANDOM is life?!! I was just googling Old El Paso Tacos to check if they were gluten free and an answer on this site - with your question on the left side bar - popped up. Random as statistically, your chances of meeting another neuro presenting Coeliac (as we spell it over here;) are frankly slim to zero! I have literally just signed up only so that I can reply to you! So, the man you want to be googling is Dr Marios Hadjivassiliou who runs the only Neuro Gluten Clinic in entirety of UK and is probably the world's leading authority on the subject. My own diagnoses (DX) took nearly 5 years as my symptoms too were primarily neurological (list just endless but I'd be happy to talk to you if site has a way of PM'ing phone number?) VERY long story cut VERY short is I saw every frickin specialist you can imagine, had private healthcare and money wasn't an issue so I wasn't even limited to the NHS and longer referral appointment times between specialists but it STILL took years of horrific illness - and terrifying given primarily Neuro based, like I genuinely thought had brain tumour or MS or such like; was horrifying - to get a DX. DX finally got only AFTER read a (tiny, so again sheet luck) piece on Hadjivassiliou's work called 'Bread causes migraines' in one of the national newspapers. I marched BACK to one of my then endless consultants and insisted on blood test for Coeliac and I recall him laughing at me [grrrr...] but thank god I held my ground as my marker came back positive and gut biopsy confirmed it. Gastroenterologist insisted all would be well within 3 months once villi grew back. That was a crock of sh*t. He knew NOTHING vis Cryptic Coeliac (typically the term used for Coeliac that does not present primarily as digestive issues) - worse, as was by then so so familiar to me from very senior consultants across all specialisms, nor would he concede that he did NOT know everything IYKWIM? So 3 months on strict gluten-free diet comes and goes, and actually much that I hadn't even realised was 'wrong' started to improve but the Neuro symptoms were not shifting and Gastro knew NADA about them and just dismissed me. Eventually I decided I HAD to see Dr H. even though he is based in Sheffield Hallam Hospital which is literally hundreds of miles away from me and even harder as he is a Doc of principle and does NO private work so I had to beg his NHS secretary for an appointment. He was an utter revelation. He nodded with EVERY symptom I discussed, he knew my walk and he knew my tribe. The simplest headline he offered me was, in his experience and from his cohort of patients, that the Neuro symptoms were much much slower to lift than the gastric ones. Further, those that were still present at the 2 year mark were likely to not further recover. He was absolutely spot on correct. ALL of my neuro symptoms bar migraines (so balance issues, muscle weakness, golden 'rain' in front of my vision, vertigo - list just endless) gradually lifted by that 2 year mark and (again, bar migraines which remained daily/chronic/intractable having onset SO suddenly 5 years previously and never ever suffered before) they have never returned. I now have the PRE-Empt Botox Protocol for migraine prevention so even that last lingering Neuro issue does have some resolution. I lost literally years of my life to this due to the failure of GPs and Specialists not even knowing how Coeliac (celiac disease) presents and have made it my mission to raise awareness which, fortunatly, my profession has enabled me to do. It is now believed that what USED to be regarded as 'typical' symptoms of celiac disease are actually the minority symptoms - hence one in a hundred people having celiac disease but only one in EIGHT of those ever beig diagnosed. IE for you and me and every other single other person who HAS a DX, there are another 7 poor souls living in torture and terror simply due to a lack of GP/MD education. It infuriates me (can you tell?!!) Please, google Marios, his research will be your new best friend and answer questions you may even realise you had until you see his work. Really hope this has helped in some way, back off to search for my gluten-free Tacos again now! Kindest regards and such best wishes, Emma x