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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This 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 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Store.


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Jmg last won the day on February 13

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  1. It's seemingly not unusual to find some people who either make up their own rules or decide that they don't apply to them. A diagnosed celiac I spoke to prior to my endoscopy surprised me by ordering a regular lager. He said it was ok for him as his 'stomach had healed'... Well that approach is not for me, even if I were still drinking (I'm on an extended break). The risk of hidden damage taking place, delayed auto immune reactions etc. mean that I wouldn't enjoy the drink even if I chose to have it. But each to their own... Just on the barley point, I had a reaction post diet to a small amount of barley malt in a cereal. It was a new rash on my elbows that I'd not had before I went gluten free, it may have been DH, I do know when I removed the barley source from my diet it went away. Obviously every person has to take their own decisions and own the consequences. I wasn't diagnosed as celiac but I still wouldn't dream of drinking a gluten beer, much as I loved it, even a supposedly 'low' gluten choice like Corona, but others do, read the comments in the page I linked to. However you're only 5 months in to your diet so my advice would be to keep strictly gluten free, don't take unnecessary risks and explore some of the naturally gluten-free free alternatives like cider, wine and other gluten-free beers. Maybe you'll find you don't miss gluten beer as much as you thought?
  2. I have a theory but it's completely unresearched and probably nonsense. When I was eating gluten I used to get very tired at the end of a big meal. I'd tend to eat quite late in any case and after I'd eaten I was pretty much done for the night. I think the gluten messed with my ability to regulate blood sugar, caused a huge load on my system and that made me sleepy and became part of the sleep cycle. After I removed gluten I found lots of weird things happening, or not happening and began to realise just how connected they all were. One of them was the tiredness going after eating. I can and still do often eat like a horse but I don't get the post meal slump any more. I don't feel tired in the slightest. I also often find myself occasionally unable to sleep till 3 or 4. Not so often that it's a major problem, but it does happen. Anyway, it may help you to read some others who have experienced the same thing, it does for me:
  3. One who is seeking to build their business via clicks and shares. Sensational headlines build traffic. A lot of these sites are just buzzfeed for ill people. You are doing just as I did when I realised I had a problem with gluten, you're surfing the web and looking for answers. There's some good sites out there, like this one, and there's plenty of snake oil merchants also. For what its worth I think there's some things of value within the site you reference, as there is in many of the other sites that also have questionable content. I don't resent people making a living by helping others with an often tricky condition, although from reading it the knowledge seems to reside mostly in the original SCD work by Elaine Gottschall, I'm not sure how value they've really added, certainly not enough for me to give them 40 bucks for some ebooks and mp3 files... Exactly! I can just imagine a 30 minute SCD infomercial with a cheesy paid audience and an excitable host who acts like it's the greatest thing in his and anyone else's existence: 'Hey you mean to tell me I get the three ebooks AND the celiac disease as well? Get outta here!' You could look there and elsewhere for guidance, but here's an idea, it's not always a good idea to look for it. I took some time off from researching this once I realised the process was no longer helping me recover. I was reading more and more accounts of people who weren't doing well, or who were reinforcing my negativity. I felt better once I stopped going to those sites and focussed on the very simple good advice from the likes of CyclingLady's post above. You may want to consider doing the same?
  4. I don't know how easy it is for you to access University of Chicago? If you can go there it may be better as they're specialists, but if that's difficult I would have another go at the current dermatologist stressing that: Put the onus on the dermatologist to please explain how an improperly taken skin sample can be used to exclude celiac. The answer to this question will determine whether you need another doctor. Others have had DH mistaken for flea bites: - You may want to mention the location of your previous skin issues? Put any and all reactions you think you have and other things which strengthen the case, ie stressing the symmetrical nature of the issue and ask point blank for celiac to be excluded definitively by biopsy. Be confident and assertive, its your health and you need answers.
  5. Hello and welcome You need that referral I think as: if the internist knew you were 2 years into a strict gluten free diet he should've realised that you would test negative for celiac. Can your medical notes from your previous home be requested?
  6. Hi Amanda and another welcome You've found a great site, there's lots of shared experiences and support to access here. You could ask about the level of damage detected in the biopsy, levels of markers in your bloods tests and what if any monitoring they propose to check how well you do on the gluten free diet? Also good points above about detecting any nutrient deficiencies so you can plan your diet appropriately. I know this must be overwhelming but hopefully you will come to see this time as a very positive event, because you can now begin to heal and find out just how well your body responds. I got so many unexpected improvements once I eliminated gluten, the back pain was one of them, I never thought for one minute it was diet related. Funnily enough I first experienced it when living off La Jolla village boulevard in your lovely home town, but sadly it took me way too long to identify the cause. Best of luck with your appointment and your onward journey into gluten free good health. Matt
  7. Yes, a blood test and then if positive an endoscopy (camera down throat) with biopsies taken of the intestine to confirm. You'd need to be eating gluten for it to work however and whether to go through the process is something only you can decide upon. There's an faq stickied above and I had my own go at collecting some links and generic answers here: Of course doing the permeability test wont affect testing so you can go ahead and do that. There's also nothing to stop you going gluten free and seeing if that helps, just dont do it if you plan on testing for celiac. Indeed eliminating that as a possibility should really come first as once you eliminate gluten it can be unpleasant to go back on it for testing purposes. Best of luck
  8. I'd not heard of this test until I read your post. I did google it and you may want to read this: mainly to make sure that you don't forgo celiac testing if you've not already undergone it, which was the concern of the researchers in this study: Best of luck and do post what it tastes like and your results, I'm sure others will also be interested
  9. Tell him you're happy to accept his viewpoint if he can find one respectable scientific institution's website that will back him up. Give him the list I'll paste below this reply as a starting point. When he fails, which he will because the science is crystal clear, point him in the direction of any one such website - University of Chicago has a good one: The average lay person doesn't understand that it's the bodies own immune system which is reacting, and that to the immune system a breadcrumb can set off a major response. Your husband may be translating his own knowledge of people with mild food intolerances, say to spicy food, and thinking that your daughter's celiac is comparable. It's understandable why he may think so, but he's 100% wrong to do so and there's a wealth of peer reviewed scientific evidence to back that up. It's also key to explain that the reaction to gluten may present in different ways as your daughter progresses on the diet. Show him this page: and ask him to think how he'd feel if a stray breadcrumb manifests on your daughter as a neurological symptom or painful skin rash that may take months to clear up? I'm sure once he has the right information he'll doubtless do everything in his power to keep her safe. If you still have a problem come back, there's a link to a study which talks about increased mortality rates amongst celiacs that slip up on average once a month. I'll find it if you need it, but you shouldn't do once your other half has had a chance to read up on this. Best of luck to you all Other resources: - a collection of questions and answers from a UK based Celiac organisation - a guide to the diagnostic process from a UK perspective. - Advice from the University of Chicago's Celiac Disease Centre - Advice from University of California, San Diego Celiac centre FAQ from Canadian Celiac Society - screening info from - Testing info from Beyond Celiac
  10. Well done on getting through the diagnostics process Cara, now you can start to feel better! Welcome to the exclusive 'not celiac but still avoiding gluten' club You will probably find the neuro symptoms take longer to resolve, it can be helpful to keep a journal to track yr progress there as it's easy to lose track of how you felt at any particular time. That also helps in identifying any slips in the diet. It sounds like you have a great doctor which is such an advantage, I'm jealous! speaking of which, now is the time to go through yr cupboards and weed out any potential gluten sources, sauce bottles, crumb filled jam or butter etc. Also be wary of old scratched pans, wooden spoons, chopping boards or sieves... and eat well, check out paleo recipes etc if you need some inspiration, there's loads we can eat and some good gluten-free alternatives if you crave a treat. if yr like me you will find all sorts of things improving over time that y never associated with diet. I never thought diet caused my back pain, but it did... So hopefully you'll get some nice surprises as you progress on the diet. All the best...
  11. It can't be any fun getting another condition diagnosed Ennis, but I hope that you can get some comfort from having an explanation for all your symptoms. I'm sure you're well read on how to deal with this but here's some of the advice our British doctor's give on living with UC just in case it's of interest. Remember to look on the bright side also, this will not affect your chances of becoming pregnant
  12. Good luck Mary Anne Remember not to exclude gluten from your diet in advance of any testing. That could lead to a false negative and make the whole process much more difficult.
  13. Thanks, I'm on the mend, just got the cough to get shut of now. Kids must be the most efficient virus transmission device ever conceived. I realised after I posted that your own bout was 2011 (flu brain) so I definitely hope you got over that
  14. Hi and welcome! You've found a great site, there's lot's of support and info available here. What do you do? It's ultimately a personal decision. Looking from the outside you have the evidence of your own reaction to the gluten free diet, you know it's a problem for you. The only things you don't know are where you fit into the spectrum of people that have that problem. Some people will fit the classic celiac model, some will test on one or the other marker, some will 'fail' the tests but 'pass' the biopsy. Some fail those but are diagnosed by Dermatitis Herpetiformus biopsy. Some, like myself, test negative on both but still react to gluten and are, for want of a better diagnosis, Non Celiac Gluten Sensitive. All of these people have one thing in common. There's no treatment other than gluten-free diet. If you get the celiac diagnosis you may get some monitoring and help with vitamin supplementation, but it's not guaranteed. You will probably get better understanding and acceptance from those around you, but that's not guaranteed either as the experiences of many on here can attest to. Perhaps the best that you may get from a positive diagnosis is the reassurance for yourself, that you have an external confirmation to help you stay disciplined and focussed on the diet. I'll let others answer that as I don't have it! I initially found out that gluten was a problem independent of the medical establishment and then I went through gluten testing and endoscopy. I tested negative for celiac but based on my reactions the consultant recommended I forgo gluten for life. In some strange ways I was disappointed with the negative diagnosis, but by then I had ample first hand evidence to support my decision to live gluten free so it didn't really matter. To all intents and purposes I live as as if the diagnosis had been positive. No exceptions. No 'just this once' moments. No 'special occasion' exemptions. Obviously the decision as to how far to go with testing is a personal one. I think you have the information you need and continuing to throw time, money and periods of ill health at the problem are unlikely to justify the risk / reward, but that's something you need to weigh up for yourself. I suspect you will wind up having to exclude gluten simply based on your own reactions and here then: is the crux of it. If you're going to stay well you have to change the way you look at gluten. It's not something that 'disagrees with you' or which 'irritates your stomach' if you have too much, it's something which triggers an auto immune reaction that affects multiple systems within your body. It's not like being intolerant of spicy food, it's impacting you in multiple ways over a long period of time. For other people it's just one more thing they can choose to eat, for you it's poison and permanently and completely off the menu. If you can make this decision internally and then stay consistent to it, those closest to you will also come to understand this is not a fad decision, but a lifelong committment. Even if they disagree, they will have to come to terms with it for your sake. It may sound difficult, but keep a food diary and track your improvements as you begin and stick to the diet. Over time your own improving health will be all the incentive you need. Best of luck whatever you decide! Matt
  15. Hello and welcome There's such a thing as refractory coeliac, but it's quite rare. A little more info could help people here to advise you. Other than eliminating gluten how would you describe your diet? Do you eat a lot of gluten-free processed foods? Many find that in the period after diagnosis they have a lot of damage to repair and they do better on a simple whole food diet. Similarly many find they have to give up dairy, although some can add this back later. I guess another question would be if you're absolutely sure that no gluten is sneaking into your diet. Whether from using old scratched saucepans, sharing cutting boards, sieves or colanders, or crumbs in a shared jar of jam etc. Another common theme is that once you eliminate gluten your body becomes far more sensitive to it and it only takes a tiny amount to derail the healing process. I don't know if you've seen it but there's some useful info in this thread also around the gluten-free diet: all the best with the new tests