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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 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. Fair enough, I know exactly how you feel. It would be a good idea to keep a food journal over the next few weeks, it's something to refer to when you prepare for your GI meeting and it's really useful for tracking progress or otherwise on the diet or nailing a potential source of gluten contamination. If you're sticking with the diet for the forseeable this is a good thread to check out: And don't be afraid to ask on here, there's plenty of people with good experience who will offer support. Best wishes
  2. I never could get into marmite in the days of gluten past. Our antipodean friends failed to sell the delights of vegemite when I lived there either. But now, starved of variety and intrigued by the B vitamins and Iron I'm almost tempted to give this a shot. Have you tried it yet?
  3. Applying Occam's razor, could the diarrhea simply be related to the diet change and thus separate from the rib pain?
  4. Hello and welcome Welcome also to the wonderful world of less than ideal medical practice... Many of us here have similar experiences to recount. The closest I've come to collapsing in the past 3 years has been due to shock when a doctor revealed they'd actually read my notes Years of TV wonder medics have skewed our vision, you come to realise that just like any other profession there are some great practitioners but also some hacks, people that are in the wrong job, or simply chronically overworked or having a bad day at the office. Your regular doctor to be fair has done their bit. The scope experience wasn't ideal and its never nice to feel that they've already made their minds up or don't have a good handle on the case as the comment about the negative IGA suggests. Particularly as it's incorrect, there are some people that test negative for that but positive on IGG or DGP etc. They can't in regard to celiac, they can refer to how they appear, but some damage is only apparent via microsopic analysis. So until the results of the biopsies are in all bets are off. I think the key to this question and getting your diagnosis lies in your follow up meeting to discuss the results. If the biopsy reveals celiac then it should be straightforward. You need to prepare for this meeting however, have good notes and some questions prepared to nail down the doctors and establish precisely what the scope and tests have revealed, especially if they're inconclusive or negative. Have your symptoms written down. Ask if the positive TTG has been accounted for. Stay on gluten until the meeting. Here is the full celiac panel: tTG IgA and tTG IgG -DGP IgA and DGP IgG -EMA IgA -total serum IgA and IgG (control test to ensure tests are not false negatives) Check your current test to see if all of these were ran. If not, ask them to explain how they're excluding celiac. Don't be fobbed off, be confident and ready to assert yourself in getting proper answers or a second opinion! For what its worth, I think you've found your answer and you're either celiac or non celiac gluten sensitive like me. If so you'll sadly need to leave the bakery, but if you can transfer your skills to gluten free baking you'll find a lot of hungry pastry starved people like me who could become your new customers! Best of luck
  5. Welcome Kristen If you've only just gone gluten free you may want to pause and try and get a test, otherwise you may find yourself having to undergo a gluten challenge if you want to confirm celiac. It may be worth starting a new thread and that will make it easier for others to get some more input?
  6. Is this any help? http://www.aetna.com/cpb/medical/data/500_599/0561.html
  7. I'm with CyclingLady, something isn't right here. Perhaps in the request that the allergist has sent? Maybe she's asked for additional tests they don't cover? The basisc celiac tests are well established and used the world over. There's nothing experimental about them. Although I don't know your system well I find it hard to imagine that there's an insurance company that actually prefers a genetic test, which will tell you next to nothing, over the blood tests. Do they have an ombudsman or appeal procedure? Would it make a difference if the request came via your GP rather than the allergist? Either way, the blood test is what you need, the genetic test wouldn't get you much further down the road.
  8. Hi Fiona, I was you 3 years ago! I also cut gluten out myself then realised what an impact it had and went to the doctor only to be told incorrect information that may have compromised the test To save you wading through my thread, I went through a challenge and had a negative biopsy, but guess what, gluten was still the problem for me and cutting it out did the trick. So even if you go down the diagnostic route and get a negative, please don't discount gluten as the cause, you may be like me. I take it you've cut gluten out again since the test? If not, then much as you won't feel like it, I'd stay on it at least up until the gastro appointment. That gives you the option of another test as he or she will realise the first one is invalid on a 2 week challenge. If you have cut out gluten then be prepared for the gastro asking you to go back on it and decide what your answer will be. If you do the challenge then there will be plenty of support here for you. Best of luck!
  9. Yes it's entirely possible! Here's an explanation if you'd like to know a little more: http://www.glutenfreedietitian.com/dietcom-blog-the-celiac-disease-lactose-intolerant-connection/ Sometimes other food intolerances emerge at this time but they too can be transient and disappear as you heal. Try to treat these first 6 months on the diet as a special project. Get yourself a safe, clean food prep area and utensils you can trust. Find some simple, whole food recipes you can enjoy and cook and freeze some spare portions so you always have an option. Like ENnis says go easy on the processed gluten-free stuff. Make sure you're eating well, you may have nutrient deficiencies due to the celiac. Take a gluten-free multivitamin and maybe a separate B supplement. You guys will be heading into what you call winter (pah ) but try and get some sunshine or take vitamin D.
  10. It could also be NCGS as related by Umberto Volta in the recent Columbia Medical Centre research, increase in IEL's was detected. I know you do your research IT but if you've not already seen it you may find this of interest: http://theglutensummittranscripts.s3.amazonaws.com/Dr_Umberto_Volta.pdf Best wishes
  11. Hello and welcome Since you're only a few months into the diet I hope you don't mind me directing you to this thread: There is a lot of good advice there, much of which you're unlikely to have heard from your doctor. It would be well worth reading through to check that you're not slipping up. Have you gone through your kitchen for instance and checked for scratched pans, got new wooden utensils and chopping boards? If it's a shared kitchen do you have your own space to keep a sieve, chopping board? Are you sharing condiments, butter or jam? Are there spice packs that may have gluten in them? That's important but also remember that the first few months on the diet are rough for many people and beyond gluten getting in even in trace amounts it's not unusual to find that other foods are causing issues. With that in mind you may want to consider Ennis's suggestion and move to whole foods as much as possible. I know the diet seems restrictive enough as it is, but treat the next few months as a detox time where you do as much to help the healing process as possible. At this point it's difficult to digest even gluten free breads, cereals etc. Try to avoid things that come in packs or boxes! If you can simplify your diet and find some simple but highly nutritious meals that agree with you this would help you in this healing time. For me it was omelettes! They were a revelation I could fill them with veggies like spinach, mushroom, kale, avocado etc. They're packed with protein, amino acids and they keep you full for a long time. I also ate a lot of salads, alongside fish often, smoked mackerel or prawns. I avoided dressings but had plenty of olive oil and cider vinegar, although you could leave that for now if your stomach doesn't like it. You can go overboard on fruit, it can be acidic as you may have found with the pineapple but I ate bananas, apples, berry's and more, I just had them with yogurt to lessen the impact on my stomach. Although in the early stages you may find you need to cut down on dairy too, a lot of us find it causes problems. These days I mostly avoid it and have coconut rice milk instead. Keep a food diary as you make any changes so you can see what works for you. Go simple to begin with and then add as you feel better and want variety. Make sure you take a good quality gluten-free vitamin tablet too. I know its worrying but the more you take action, the better you'll feel. Best of luck, you've found a great site and there's lots of people here who will offer support and advice!
  12. Please don't apologise! You're very welcome here and please don't be afraid to post whenever and whatever you wish. There are no foolish questions, all of us were where you are now once. There's not much data on 'how much' gluten you should eat but CyclingLadies link from the other thread has some guidance: http://www.cureceliacdisease.org/faq/how-much-gluten-should-be-consumed-prior-to-being-screened-for-celiac-disease/ Sounds like you should be fine as is Not sure, they typically tend to want to look, endoscopy is the 'gold standard' although there are people on here who have been diagnosed without one, so it's not set in stone. From what you've said so far they will very strongly suspect celiac and may be happy for you to proceed straight to the diet so you can hopefully put on some weight, so really one to discuss with the consultant. Stay on gluten till you speak to them though! Also speak about the waiting list. It may be that you can call on a regular basis to check for cancellations for example, or there may be another hospital in the same trust that could offer you a quicker service. Be sure to write some notes before your meeting so you dont forget to raise a point, easily done in stressful circumstances. Definitely ask, but not sure if available in UK aside from maybe private labs. Here they are: tTG IgA and tTG IgG -DGP IgA and DGP IgG -EMA IgA -total serum IgA and IgG (control test to ensure tests are not false negatives) One final point, I know this is horrible and stressful but I get the feeling you are close to some answers and hopefully finally some healing and relief. Be positive for these last weeks and try and pick out some foods to enjoy! Best wishes and lots of luck
  13. And the people that put wheat in Walkers crips ready salted will be first against the wall... Reading the lindt section they have that ambiguity on barley malt extract from coeliac uk. That winds me up, I got ill from barley malt in cereal in part because coeliac uk were so relaxed about it. I was eating harvest morn corn flakes with barley malt because they;d been in the guide, then I got ill and then found theyd been removed in the new guide. Now I avoid all of it of course and feel a bit foolish for being so blase I also seem to have misread the post linked to above, regular snickers bars are not ok It's why I like toblerone, theres no ambiguity all their stuff is ok.
  14. Just describe your symptoms, say that someone has suggested you get your blood sugar levels checked and they shouldn't have a problem with it. Fwiw, I thought I was either diabetic or pre diabetic and had blood sugars done several times. The constant water drinking / urination, heavy sweats, shakiness, light headedness etc all went with the gluten.
  15. Keep a food journal, it's the best way of tracking down what is affecting you. ESPECIALLY if you suffer from brain fog as its really easy to lose track or to forget how you were feeling a few days ago. Just short entries, what you eat, what time and how you feel.