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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.

Jmg

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  1. You may find these articles useful also: https://celiac.org/live-gluten-free/glutenfreediet/label-reading/ https://www.beyondceliac.org/gluten-free-diet/reading-food-labels/ https://www.celiac.com/articles/182/1/Unsafe-Gluten-Free-Food-List-Unsafe-Ingredients/Page1.html
  2. I've had kefir without problems but it was unflavoured I think. Although how certain are you that the kefir was to blame? Can you retrace your steps foodwise and see if there's anything else that may be suspect/subject to cross contamination? Are you ok with dairy? I've found myself if anything more sensitive to it since going gluten-free.
  3. To add to the good advice above. I think your husband has to take it on himself to communicate with his parents that this is a serious, medically diagnosed condition that their grandson has to live with for the rest of his life. He needs them to back you up, be supportive etc. On no account should you be cast as the fussy daughter-in-law who has to have her crazy notions indulged - they need to know that their son is 100% on board with this and that the pair of you are united. Just one other point. It's very difficult for most people to conceptualise celiac, they tend to think of it as they would a problem with spicy food say. Something that you should probably avoid but a little bit now and then won't hurt. So without getting scientific, it would be good if your husband could get that key point across. That a little is just about as bad as a lot when the body's immune system is involved. That there can't be any compromises or cheating. Even the suggestion will be harmful for your son in adjusting. Also that you understand that their house cannot be a gluten-free environment and you don't expect them to change their lives whilst your there - but that you need to take reasonable precautions to keep your son safe. I think as long as people understand there's reasons for all the precautions etc its easier for them to accept. They may not agree with it or understand it but they can at least understand your thought process. Finally, get as much of this communicating done in advance so you, your husband and your son can just enjoy himself without constant references to his diet. Hope it goes well!
  4. I felt worse after I restarted gluten free diet after my challenge and had a rougher time than I had first time round. So I don't think its unusual. Give your body time to recover. Eat well, lots of good whole foods, maybe a decent multivitamin etc. Go easy on processed gluten-free stuff for awhile and avoid oats as well. best of luck
  5. It's a Yorkshire staple! I used to pass their then 'factory' just about every day when I lived in Sheffield, though apparently they've moved now and the Uni are going to turn their old place into a pub. The relish is lovely and marked gluten free and suitable for coeliacs on the bottle for added reassurance. It's nice to add a bit of zip to sauces etc. I think Morrisons stock it countrywide Cristiana but if you do struggle getting hold of some PM me and I'll post you a bottle.
  6. Hi Benjamin and welcome You've found a good site. Everyone above has given you good advice I just wanted to reinforce this point from Ravenwoodglass: Some people (like me), test negative for celiac but still have a problem with gluten. This is called Non Celiac Gluten Sensitivity and is not a well known or understood condition. Suffice to say if you do test negative, you shouldn't assume that gluten is fine for you, it may well not be. Best of luck! Matt
  7. You're welcome I don't think any doctor should be too reluctant to request a blood test if you set things out for them in the right way. You have symptoms consistent with celiac/gluten sensitivity, you have anecdotal evidence (your positive reaction to going gluten free). So you have a good case. If and when you get some tests scheduled you will have to go back on gluten. This can be rough. It helped me to come on here and document how I was feeling. Support from here helped me get through the challenge period. So do come back on if your doing the challenge.
  8. Hello and welcome It can be scary and there's definitely a mental side to dealing with this which is at least as important as the physical. If available to you consider seeking out some counselling to help you process this. It was really useful for me, as were the people on this forum which is a great resource which you should use as much as you need to. And, easy to say, try to be optimistic! It may be that you've solved a huge health puzzle whilst you're still young and have lots of great years ahead of you, years which will be so much more enjoyable gluten free. Time will help you learn the diet and what at first seems impossible will become the new normal to the point where you won't have to think too much about it. We are an adaptable species and however hard it seems at the outset you will adapt and you will feel better. Best of luck!
  9. Hi again Long time since I lived down under but I'll give it a shot pending any Aussie members replying... Your naturopath has helped you and put you on what sounds like the right track, but now consider that you may be better off with a conventional doctor for the testing process. Be wary of food intolerance tests. They are notoriously inaccurate and as you've found expensive. The first priority is to get a celiac diagnosis/exclusion, you can proceed better from there. The tests to request are: Anti-Tissue Transglutaminase (tTG) IgA Deamidated Gliadin Peptide (DGP) IgA and IgG Total Serum IgA Some practices will only test one. Request a 'full celiac panel'. Before you see the doctor make some concise notes / bullet points that detail: Your past medical history Your positive initial reaction to the gluten diet Your wish now to seek a medical diagnosis and willingness to comply with any requirements That should be sufficient for a doctor to request a test. No! Your naturopath doesn't know what they're talking about if they're talking about the accepted celiac tests. You'll need to do 8-12 weeks eating gluten to ensure an accurate test. Otherwise you're throwing money away. A local doctor should be able to request the tests so if you have one you're happy with try there. Alternatively you can search to see if anyone within a reasonable distance is listed maybe with Coeliac Australia or via some of the links here https://www.healthdirect.gov.au/coeliac-disease Again, *good luck with it all and keep asking questions, this place was very helpful to me and I'm sure it will prove so to you also. Cheers, Matt *ps But bad luck in the Ashes to compensate
  10. Hello and welcome I don't think I've seen the report you reference. Obviously NCGS patients won't test positive for celiac antibodies but I'd not seen anything saying that they would never test positive for other conditions (If I'm reading you correctly). I tried to bring together the little that's known about NCGS here: There's info there on a potential new blood marker that's been identified at Columbia, it could mean a test could be available some day. There's also a superb Q&A with Umberto Volta that I recommend. If it's any consolation, whilst individual medical practitioners may be doubtful and there's something of a backlash amongst mainstream health writers over the 'gluten fad' dieters, amongst the leading celiac researchers there appears to be little doubt about NCGS, just a recognition that as yet they don't have the understanding they need. Kind Regards, Matt
  11. Do I have dermatitis herpetiformis?

    I knew that DH celiacs often tested negative on the blood test but didn't know why. Fascinating!
  12. Could some of your symptoms be related to antihistamine withdrawal? Did the doctor check your IGE levels?
  13. G'day Matt (couldn't resist it). Yes, my story is similar. I had all sorts of prescriptions over the years and nothing worked particularly well until a few years ago I changed my diet and the brain fog lifted and my mood began to lighten. It was a revelation and once I knew I could feel that way I never wanted to go back. It's a little complicated by the range of treatments from the naturopath, supplements and detox etc. If you make several changes at once then it's difficult to pin down one as a cause. My first suggestion is to do a little research. It's very good news that you found this site, it's a helpful community and there's lots of knowledge here. You'll find a forum faq above and I collected some Q&A's awhile ago in this post: https://www.celiac.com/gluten-free/topic/115138-suggestion-faq-intro-post-for-the-diagnosis-board-input-requested/?do=findComment&comment=970127 try reading through, following a couple of the links and you'll feel better once you have a better grasp of this. Second, start to keep a food / mood diary! Note what you eat and when and how you're feeling at that point. Note any health related things you notice. Skin rash etc. This can really help you tie down anything which may be affecting your mood/health. You may have more than one issue, eg dairy. No this isn't right. Celiac and gluten sensitivity can affect people in a lot of different ways. See link above. Ok, testing would need you back on gluten for a 'challenge'. This is so your body can develop the antibodies picked up by the test. You would have to be back on for 8-12 weeks depending on what the doctor says. Be warned, this can be rough. You may find you react worse to reintroducing it than you ever did before. First step is to find a doctor that understands celiac. Maybe you need either a referral or just google to see if there's any doctors in your area that specialise? I've driven through rural Oz so I realise you may not have a big choice! If you see them and they want to test you can then start eating gluten again. Finally, you may have a problem with gluten but test negative for celiac. I did. So think in advance of what you want from the test and what you'll do with the info. For me, testing negative was difficult to take, but I did manage via the challenge to confirm that gluten was a big problem for me and the Doc told me to avoid it as if I'd tested positive for celiac. This is NCGS, there's no test for it, it's what you wind up with if you find gluten is a problem but you test negative for celiac. It didn't make much difference ultimately, I was gluten free for life regardless once I did the challenge. Best of luck! Matt
  14. I know that for obvious reasons the first thought is intestinal inflammation but it sounds a bit like intercostal neuralgia? Not sure if that's been ruled out / in? Ignore me if that's a daft idea, a lot of my gluten mediated problems come via the nervous system so I wonder if that's the same for others. If it were in any case the NSAID is a potential treatment: https://njmetropain.com/intercostal-neuralgia-feels-like/ As for the side effects. I think you have to look at the 'may cause' and make a risk assesssment. In the UK a lot of hospital admissions are related to adverse drug reactions to prescribed medications so you're right to be vigilant. On the other hand, these medications have been through a testing procedure and should therefore offer at least some chance of working. Maybe there's another alternative with less troubling side effects. Ask a pharmacist and see if you can find out any stats on that 'may cause' statement. Because if it's 1 in a thousand, you may want to give the medicine a shot?
  15. Sorry you feel that way. It wasn't my intention to annoy you. There's a weird relation with smoking (not just weed) and celiac, you may want to read up on that a bit more: https://www.ncbi.nlm.nih.gov/pubmed/11280554 Best of luck, hope you're soon feeling better.