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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 Celiac.com's FREE weekly eNewsletter   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

Cara123

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  1. Ohh wow this is amazing thank you ☺ (I will seek out the ingredients for these today!) I'm not the best cook and I'm ashamed to say I've never soaked anything over night! I have tried some gluten free recipes that have taken me out of my cooking comfort zone in the past fortnight, so I'm working up to this! I am going to visit Morrison's supermarket today to see if I can get some of these ingredients! I think my concern is not liking the difference in taste between the milk and dairy I'm used to and the alternatives, although I am adapting to cutting out gluten products better than I could ever have imagined so fingers crossed so maybe my concerns are unwarranted ☺ (my one big gluten free rejection though has been genius bread .. ugh! Left me with a dry mouth and sense of burning for 2 days, stores own brands have been better for me so far ☺ (and I've even limited the intake of gluten free breads in favour of whole foods! And once they get my levothyroxine dose correct I'm hoping I'll lose some of the weight gained!)
  2. Thank you ☺ this is great! I will join coeliacs UK today! That book would be great! Yes the good and bad days are a bit of an issue, I had a really good day yesterday, it's the best I've felt in what feels like forever! Like most people I've been reading posts from in here, it took a while to find out what was causing the multitude of (what seemed like unrelated) symptoms, but early in January I had the vision loss etc and was knocked sideways, I've been off work since, I've been in my career for 20 years and I've never missed so much work that gives me one of my main concerns that is the good days and bad days, because I teach 16+ (age group) and around 25 per class, I am concerned about the bad days when I return to work, how does that work? Because when the symptoms are at their worst I can't focus at all, mentally and visually? I know there's no quick fix, and my boss has been really good and understanding, I'm not sure that they realise the amount of time it can take for your body to recover during the process of eliminating gluten (and from what I'm reading some symptoms don't go because of the damage caused?) Two slightly unrelated questions how do I do recommendations on here? (And what do they mean? 😊 I'm doing this on my phone lol and I'm not good at it!) Also how do you just quite small bits from messages as I keep quoting the whole messages! 😁 I need to get better at all this!!! 😁
  3. Hi Bonnie, Thank you for this, yes lactose has been mentioned, what do you use to replace milk? Cheese etc? I will eliminate it to see if it helps with the Neuro symptoms, yes I definitely recognise the hungry bit! 😑
  4. Hi Cristiana Yes definitely, I'm noticing the Neuro symptoms are the ones that seem to be clinging on mostly, but I guess time will tell with them, I do hope they go though as they're pretty unpleasant, as you said. I will definitely keep you up to date with the amytriptilyne, I've been on it for 6 days now I believe. I have to admit I was very nervous when starting it (I did the reading user reviews but, and the leaflet in the packet and they lost some pretty ugly side effects, after taking it at bedtime I lay there for a while wondering of if done the right thing) so far the Neuros don't seem to have settled, the gut has (but it has started to settle on giving up gluten) I seem a little more relaxed but that again could be because of stopping the gluten. I have noticed a dry mouth, which is listed as a side effect. But it's early days so I'm hopeful! i will keep you updated:)
  5. Hey there, Sorry for the delay in responding! Thank you for welcoming me in to the 'not celiac but still avoiding gluten club' 😁 well, I have been gluten free for 2 weeks now I believe! I have followed all of your advice and I've been really careful with everything! It takes some thinking to make sure that you don't actually ingest some gluten! I have gone down the whole foods route to begin with, and I have found a couple of gluten free substitutes that I have reallyfound useful when I've been desperately hungry, Nairn's wholegrain crackers have been great, and I did find some Warburton's rolls and some Thins at Aldi that I liked, but I've been back a few times since and they haven't had them! But I did just see an advert for specifically gluten free products at Morrisons! (Sorry I know some of these are U.K. shops/products) apparently they have hundreds of items! So I'm going there tomorrow to check it out! So my breakfast these days mainly consists of Greek yogurt, bluberries and honey, bananas and the crackers (and a cuppa with milk and sugar! The Dr did mention that I have to see how I go with lactose so I haven't taken that from my diet al though I don't think i have a lot of dairy) lunch has tended to be gluten free soup or thins with light spread cheese (like philly or unbranded) with prawns and leafy green stuff. Evening meal things like potato or rice with meat and veg or salad! I am also treating myself to a twirl or a flake as i was informed they are acceptable 😁. Does that sound a good selection? Am I missing anything? I do think some gluten has snuck in though as I have had some rough days (e.g. migraine, blurred vision and fatigue) but that could just be withdrawal I suppose? The joint pain is still there though! But I'm on the up I believe! I feel a bit more in charge now so that's always a plus! The hardest bit was not knowing I think ☺ Thank you again ☺
  6. Hi guys, I'm not sure how this works and if you'll get a notification of my update. I just wanted to let you know that I've had my results back and the gastroenterologist has said that I don't have coeliac but am gluten intolerant. She is increasing my levothyroxine and starting me on the small dose of amytriptilyne for the neuropathy (I think that's right? The migraines, joint pains etc) I also need folic acid and to continue with ferrous fumurate. She is planning to scan my liver as something has increased there (fat content?) But she said that could subside with the increased thyroxine. I took the advice to stop gluten after I had completed the tests (so that's 4 or 5 days ago) and my stomach issues (pain, bowel movements, cramps etc) seemed to settle down really quickly, the painful joints, dizziness etc still there but I can definitely feel the difference already! So onwards and upwards with the gluten free diet, im just so relieved to know that it's possible to aim back to where I was before this all started! So I will be staying on here and checking out your great advice. Thank you all so much!
  7. ☺ I appreciate all of your help, and I had been feeling the same, it's not nice to take tablets especially ones such as that, which can be worrying, but I'm glad to hear that they are working for someone who is taking them ☺ so that gives me hope if I'm prescribed them. ☺
  8. Ahh, thank you, that's really good to hear! Sounds like your friend is doing really well! I will definitely be monitoring what I eat so hopefully I will lose weight in the process .... Having said that if Dairy Milk becomes gluten free then my good intentions may go out the window!!! 😆
  9. This is great advice thank you! Yes I recognised amytriptilyne as an antidepressant when the specialist mentioned it and my reaction was like yours, I was very quick to point out that I wasn't depressed, exhausted and fed up but not depressed. She said that the amount she sold prescribe would be tiny compared to the dose given for depression, she said that it is useful for the neuropathys inc migraine and painful nerve endings (I was having pain in my gums, I thought I had a cavity or something but that wasn't the case, the specialist said it was neuropathy? ) I didn't realise it was a tricyclic, dont they have adverse reaction with foods that involve fermentation?or is that MAOIs? If it is tricyclics that could be counterproductive maybe? I don't like taking tablets, but have been taking a few recently, levothyroxine, ferrous sulphate, lansoprazole etc. I am glad to hear that Cadbury's flake is safe (otlr a twirl as essentially its a flake in a chocolate wrapper so less messy! Yum!) As it happens I prefer that to anything in terms of a treat so its good to know i dont have to give up everything that I love! ☺ ohh and I know what you mean re the cost of gluten free! It is expensive that's for sure! I will definitely check out everyone's secret shames next! ☺
  10. Ohh you've had them for such a long time! That must be hard! Even without the headach the visual disturbances are really unpleasant! Feeling horrible for such a long time after was horrible! How do you manage on a day to day basis, in terms of commitments? I am worried about the impact on work if there become regular.
  11. Ahh thank you for this, my mother was right it turns out, she said to stay away from the contraceptive pill also! I have stopped them (the birth control) now, a few weeks ago, so I'm hoping it will help. I will also try the magnesium as soon as testing is finished, and the amytriptyline to if the specialist decides to go down that route and prescribe this. Thank you again for this, I only joined yesterday and I feel like im being heard and supported and it's like a breath of fresh air! Thank you ☺
  12. These are definitely the things I need to learn about, knowing what food combinations will maximise nutrient intake and what vitamin supplements to use (and how to make sure they absorb properly) this is where things seem to get complicated, I've never had to think so hard about food (whereas given the history over the years I should have, I just didn't realise what was potentially happening, and over the past few months I feel like I've been a real pain for my Dr as I've been back and forth like a yoyo) when the Dr discovered the anaemia, there was no apparent reason for it as I don't have a cycle due to contraceptive medication, so he thought it may be a slightly bleeding ulcer, hence the gastroenterologist. Without her (the gastro) suggesting coeliac or gluten intolerance I would have still felt like I was going mad and falling apart all at the same time! And also feeling like no-one was taking me seriously, I felt on my own until she said she'd seen many patients with similar symptoms.
  13. Hi Tessa, Thank you for this,I hope that the gastro specialist will test me for this as that would be very useful given that another Dr was going to put me on a mild anti convulsant medication, I would prefer to use a supplement such as magnesium rather than that. Although the gastroenterologist did mention a low dose of amytriptilyne (spelling correct?) she said it can help with the migraine but also some other symptoms. But I would definitely prefer supplementsto the potential side effects that I understand come with some of these tablets!
  14. Hi Cristiana Thank you for the message, I recognise what you are saying about the reading etc, I love to read but havent been able to since I had the first migraine, I have found that i struggle to focus, my vision is blurry and I feel sick and dizzy (like trying to read in a car). It's taken me a few weeks to feel able to do things like text and email. I also notice that I have days where I struggle to see through my right eye properly, it's hard to describe the sensation. It's unpleasant. I've had bloods to check menopause and they've said it's definitely not that. My mother suggested hormones may play a role so I stopped taking the contraceptive pill. (although my Dr said there was no need to stop? I'm giving it a go though as you have to try anything I guess). I've had my eyes checked and they are fine apparently. I do think stress may play a role though. Thank you, I'm definitely sticking around on here, you've all been so great with the advice ☺
  15. Ohh you have my sympathy! I've never experienced anything like that, it was frightening! I didn't realise it was a migraine until the evening, I lost the vision 3 times in the morning but only with a fuzzy head, so I didn't think it was a migraine. All afternoon I felt rough and rested, but by the evening it came back with the most horrific pain that started in the back of my neck and went up over my head it was really horrible! I worry about how it will affect my career as the aftershocks lasted for ages! I teach and there's no way you can teach 25 or so students at a time feeling like that! How often do you suffer with this, if you don't mind me asking? As the Dr said that now I've had one I'll be likely to have more?