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Jmg last won the day on March 16 2018

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  1. Hi Cristiana I've found I have a mixture of responses. I get 'early warnings' which are neurological, a trapped nerve, muscle twitches, greyed out vision, which I think can come from even small amounts of cross contamination. These are within hours. The sneezing, eye watering and shortness of breath I'm now primarily associating with either milk or air born gluten. I'll sneeze in the bakery aisle at the supermarket for instance. THey're instant or very soon afterwards. The other stuff I associate with a delay of perhaps 2-3 days before it starts to manifest. The brain fog, depression, back ache screwed up digestion etc. I found the food diary I kept during the trial very good for working out this delayed response time. Wish I could find it as I'd post it here for reference. It's been awhile since I've eaten a large amount of fully glutenised food. I think a regular pork pie may be actual celiac kryptonite so the extended response does sound normal to me. You have to think in terms of the antibodies created which will have a longer life causing havoc in your body than the offending pie did. Hope you're feeling better soon. Sending best wishes... Matt
  2. Hi Paula and welcome You do have symptoms that are consistent with coeliac / non coeliac gluten sensitivity, but obviously no-one can diagnose that on a forum! Have you been given a coeliac blood test? That would be the first step. Then it would be an endoscopy rather than colonoscopy if coeliac were suspected. They would be looking via biopsy at the small intestine for signs of villi damage. You may well have been given one of these already if you've been speaking to a gastroenterologist in the UK but it would be good to confirm this. The test would only be accurate if you were eating gluten every day for 8-12 weeks beforehand. If not, you could get a false negative. See if you can find out if you had this test and request a copy of it from your GP. Note they may charge you for it, I paid a fiver for mine to be photocopied... Sometimes they will proceed to endoscopy even if the test is negative. That happened in my case (also in UK). You may be tempted to cut gluten out. If you do this you may notice a difference but you will also make the diagnosis process much harder. So best idea is usually to stay on it till testing is completed. However if you finish with a negative result, DO TRY THE gluten-free DIET REGARDLESS... as you may be like me, test negative but react badly to gluten also known as Non Coeliac Gluten Sensitive. There's a forum FAQ stickied above and this topic may be useful also. Note the blood test info on that post a little out of date, these are the tests you need: Anti-Endomysial (EMA) IgA Anti-Tissue Transglutaminase (tTG) IgA Deamidated Gliadin Peptide (DGP) IgA and IgG Total Serum IgA Good luck! Matt
  3. Jmg

    "Skeptical" doctors?

    Hi moleface and welcome! I found your posts a tough read because I felt like I could've written them myself. I was raised to think of the doctor as all knowing and it's only through painful experience that I've taken them down from that childish pedestal and look at them dispassionately as either good, (rare) bad, (less rare) or mediocre (most of them). To be fair this now matches up to the medical students I knew at University... Where celiac / gluten sensitivity is concerned however there's an additional ignorance factor to take in. Many of them have had little training. I saw one estimated they received half a day on celiac etc during their 7 year training period. I've had doctors assure me that one week on gluten is enough for the blood test to be accurate. Later finding out it was guess work on their part. There are so many bizarre ways that the condition can manifest and every case seems different. I don't have any easy answers and my experience of US healthcare is limited but suggest. Firstly, you need a fresh start with a good doctor and the Crohns is serious and needs treatment. Do the research, find a doctor that references celiac or intolerance issues, looks for online reviews, travel if necessary and write them a short letter detailing your previous experiences, the pain you are currently in and your need for help. You need and deserve good caring medical care and if you're upfront about past issues a good doctor will look to help. If they don't or refuse then you know they weren't any good in the first instance. Second, I wouldn't even bother opening up the celiac or gluten sensitive box. You've excluded gluten from your diet a long time ago and you're not going back to it? So, just say: 'For your reference, years ago following health problems I decided to exclude gluten from my diet and I noticed a very significant response from my body. I did pursue medical confirmation but unfortunately the advice I was given at the time turned out to be incorrect and my subsequent negative diagnosis may not be reliable although my endoscopy did reveal other issues which may be related. Given my positive response to the gluten free diet I continue to follow it to this day and given there's no treatment available other than the diet I already follow I'm not concerned about chasing a celiac diagnosis.' Document everything. Record visits, write brief notes. Before a consult have your notes in order and have any questions you have listed as concisely as possible. Hi Dr I have noticed Symptom 1, duration, Symptom 2, duration, Symptom 3, duration Be concise, be organised, be polite, but do ask questions if you're not getting listened to and don't be fobbed off. Ask a closed question if you're not getting anywere. ie. Doctor given symptom 1,2 and 3 can you please explain to me how you have excluded Crohns as a potential diagnosis? Finally you can take some advice from the ancient stoic philosophers and manage your own expectations to minimise the stress doctor visit causes. You won't get a whip smart diagnostician from 'House' although you may get one with his people skills I look at them now like mechanics. Some of them are better than others at different things and the small town guy who fixes every different type of car deserves respect but may not be the best person at recognising issues with an obscure Italian car from the late 70's. Just get what you can from them but this: should be a bare minimum. If you're not getting that move on until you do. Wishing you the best of luck! Matt
  4. I think the very fact you notice such a response from eating gluten is a big signal that it's an issue for you. Most people wouldn't notice if they removed gluten from their diet but it's having a profound affect with you. Gluten can have an opiod effect on some people: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5025969/ it can also cause anxiety. It may be that if and when you go fully gluten free you have to pass through a withdrawal period before you begin to experience the positive effects of the diet. Make sure testing is complete before you do this but if and when that time comes post here and there will be support and advice to help you through it. Finally, even if tests are negative give serious thought to trialling the diet. Some of us test negative but do far better without gluten in our lives. Best of luck!
  5. Hi Garry and welcome! This: sounds like Cyclic vomiting syndrome: https://ghr.nlm.nih.gov/condition/cyclic-vomiting-syndrome#diagnosis You may find the following links helpful: http://cvsa.websitetoolbox.com/post/gluten-free-diet-2184233?trail= but I'm just a layman what do I know? Take Karen's advice, get to your doctor and see if they can help diagnose as the ER guys will only help when the problem is presenting. Wishing you the best of luck Matt
  6. Jmg

    The Dreaded Gluten Detox

    Were these symptoms you had experienced before removing gluten? They are all symptoms associated with it, I had palpitations, reddened complexion and psoriasis/seborrhea dermatitis for instance which all improved once removing gluten. The period once I removed it was very up and down and this could explain your symptoms, but don't substitute a laypersons internet posting for going to see your doctor and confirming it with them, especially when palpitations are a symptom. Have you had any celiac test? Reacting in this way is indicative of you having either celiac or gluten sensitivity, but removing gluten before testing is not recommended. It makes it harder to get a reliable test result.
  7. Hi and welcome Wow, what a great opening post. You've clearly thought this through. Difficult to know for certain but many experience an increased response to gluten once removing and then reintroducing it. So yes, possibly! Difficult to say. You don't mention what your symptoms are, but in themselves they wouldn't give much of a guide anyway. You need to get a full celiac panel done after a gluten challenge to either confirm or diagnose celiac. https://celiac.org/celiac-disease/understanding-celiac-disease-2/diagnosing-celiac-disease/screening/ Keep a food diary during the challenge. If you react to the gluten but test negative on a full panel you may be NCGS. But this is jumping ahead. First see your doctor, explain that you want a test and agree with him how long you'll be eating gluten daily prior to taking blood for a full panel. Best of luck, hope you find your answers and good health at the end of the process! matt
  8. NHS professionals are generally ok but their are also some dreadful ones. You sound like you've been unlucky. I'd be inclined to put something in writing regarding both your treatment and where you go from here. This could either be in a letter to the consultant with your GP copied in or, via your local hospital's complaints procedure: https://www.nhs.uk/NHSEngland/complaints-and-feedback/Pages/nhs-complaints.aspx If needed get help drafting the letter. Keep it factual, concise and detail both your symptoms, the attitude of consultant and your concern that the failure to go through on the endoscopy may leave you withot a diagnosis or at risk. Don't make any medical claims yourself, just detail your concerns that you've been prematurely discharged, that you're still in pain, that you have no diagnosis and you have not been told that any conditions have been excluded. Be polite, but emphasise that you are unhappy with your treatment, would like a second opinion, would like this expedited as quickly as possible and you reserve any and all rights whilst making this polite request without prejudice. When you see your GP give him or her a copy of the letter and explain your concern. It will be up to them then to either seek another referral or alternative. But they will know from your letter that you mean business and won't be fobbed off. Best of luck!
  9. Hi Donna, Just on this point: The same advice from your other thread still holds: You are going gluten free before you have testing, this isn't correct and it's going to make it much more difficult and potentially painful for you should you pursue a diagnosis later down the road. Consider an appt at your local surgery with another doctor to clarify just how coeliac diagnosis actually works Ok back to your post! You mention a couple of things which suggest that coeliac/gluten isn't neccesarily to blame for your current discomfort: Lot's of people do some fasting during the week but generally keeping to regular eating times can help you resolve some stomach issues. If your stomach is irritated coffee isn't the best thing you can give it! Finally if gluten is a problem for you and you've just gone gluten free that can sometimes be a rough ride in itself. Your body may be geared up for a response to gluten then you remove it and it's still in fighting mode. That's all supposition however and I suggest that a visit to another doctor is the best advice I can give you. Best of luck and I hope you feel better soon! Matt
  10. Jmg

    Antibodies still super high?

    You should wash rice, but not because of fears about gluten, but because it helps to remove other toxic elements. Here's a good article explaining why and including some detailed advice on how to wash rice. It's especially relevant to you if you're eating a lot in your diet: http://www.bbc.co.uk/programmes/articles/2F1MDzyW55pg97Tdpp7gqLN/should-i-be-concerned-about-arsenic-in-my-rice You shouldn't need to have certified gluten-free labels on beans or lentils etc. Just wash them before cooking.
  11. Welcome Consider starting a new thread as more people will see your post and may be able to offer some help. Best, Matt
  12. Welcome Demetria77 and no you're not alone! There are people here who have gone through similar experiences and came through the other side stronger, healthier and happier. Things may seem bleak now but that doesn't mean they won't soon improve, that's what life is like sometimes. I was a little unclear about what happened to you here: Was this month of starvation you following a gluten free diet? If so and you then returned to eating a lot of gluten foods that could explain why you got much worse. It could also explain why you feel so miserable as gluten may be impacting your mental state as well. I know you've had bad experiences with doctors but I think you should consider trying again to get a diagnosis as it could prove very helpful for you. Maybe asking or searching your area for a doctor that specialises in celiac? If you find a doctor that's willing to test you and help you through the gluten challenge period that may make it easier to endure. However I'll just add, if now is not a good time to pursue a diagnosis via a gluten challenge, you can still take some steps to get an answer. Try to start a food journal, note what you eat, the time and how you're feeling. Note any symptoms such as brain fog, throat sore, digestive stuff etc. You can use a note app on your phone or a little notepad whichever you prefer. This will help you track any reactions to foods and it also helps make you think a bit about what you're eating. Second, you need to look after your mind as well as your body. Dealing with these kind of conditions is very stressful. Is there a counselling service at the college that you could book an appointment with? It could prove really helpful to speak to someone outside your immediate circle, whether its to vent or just chat! It really helped me when I did this aside from any of the tests etc. You will also find lots of good advice and good people here, so do stay in touch here also Best of luck Matt
  13. Hi Donna You can ask for a second opinion: https://www.nhs.uk/chq/Pages/910.aspx?CategoryID=68 See if you can get a printout of the blood test results. The practice wasn't very helpful, I had to pay £5 for mine, but it was helpful. I found that the standard NHS test in my area didn't include all of the full panel. Which does leave a question mark as to whether my negative result was accurate. You don't mention your symptoms here but reacting to a gluten free meal is unusual unless gluten is an issue for you: So don't discount your doctor may be right, although this: is bizarre! You need to be eating gluten for tests to be accurate. The test by the way is blood test followed by endoscopy. Best of luck! Matt
  14. That does make it a little harder. The messaging has to be about preventing harm and it may be a little more difficult for her to understand, there are plenty of adults who don't take the diet as strictly as they should because their particular symptoms aren't acute. However be aware that once on the gluten-free diet her responses could well change and she may experience a much stronger reaction to even a small amount of gluten should she slip up on the diet.
  15. Hi and welcome I would present it as a positive, which, although it may not seem that way at the time, it is. Focus on the positive aspect, now you and her know what the issue is, and you know how to address it. Stress that this is a condition that has a very simple solution, the avoidance of gluten, and that though that will seem tough to begin with it will get easier in time. Focus on how lucky it is that you've found this out now when she's young and that means both the healing process should be more straightforward and you can prevent any long term conditions that people who may discover later in life may suffer from. Don't downplay it too much, she's going to have to have to face some tough choices and gradually learn to take responsibility for everything she eats. In time this may help her in other ways. Let her discover some of this for herself. Here's a page written for kids: https://kidshealth.org/en/kids/celiac.html Get a selection of the best gluten free substitute foods. Don't go overboard on them, they're full of fat and sugar, but do let her know that this doesn't mean the end of nice cakes, sweets, chocolates etc. Share them with her and discuss which is best etc. If they don't taste great to begin with don't worry too much, in time you forget what the gluten versions were like... ish Maybe you'll find some helpful ideas here too: best of luck to you both Matt