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      Frequently Asked Questions About Celiac Disease   04/07/2018

      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?  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

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  2. PCP and husband both displaying questionable or just plain bad judgment, IMO (not a doctor, just a parent to celiacs). If your husband has low-level ongoinggluten exposure at home, seems like that could be contributing to the joint pain, stomach cramps, and fibromyalgia.
  3. Charmain joined the community
  4. kamb joined the community
  5. faereefire joined the community
  6. Today
  7. Jtjenkins joined the community
  8. Jenny83 joined the community
  9. annacat728 joined the community
  10. Ofallo joined the community
  11. I found that most D3 is made from lanolin (sheep skin oils) and many have issues with wool allergy. Blue Bonnet D3 is sourced from fish. Use it everyday. Amazon.
  12. Sounds like perhaps a call to my insurance might be in order, too. Thanks!
  13. maquinn55 joined the community
  14. Your PCP or OB/GYN can order the genetic test for you. Maybe your insurance will pay for it that way. In some states, you can go to a place like Quest diagnostics and "order" it yourself. It is around $300 when I got it a few years ago.
  15. Celiac.com 04/19/2018 - Previous genome and linkage studies indicate the existence of a new disease triggering mechanism that involves amino acid metabolism and nutrient sensing signaling pathways. In an effort to determine if amino acids might play a role in the development of celiac disease, a team of researchers recently set out to investigate if plasma amino acid levels differed among children with celiac disease compared with a control group. The research team included Åsa Torinsson Naluai, Ladan Saadat Vafa, Audur H. Gudjonsdottir, Henrik Arnell, Lars Browaldh, and Daniel Agardh. They are variously affiliated with the Institute of Biomedicine, Department of Microbiology & Immunology, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden; the Institute of Clinical Sciences, Sahlgrenska Academy at the University of Gothenburg, Gothenburg, Sweden; the Department of Pediatric Gastroenterology, Hepatology and Nutrition, Karolinska University Hospital and Division of Pediatrics, CLINTEC, Karolinska Institute, Stockholm, Sweden; the Department of Clinical Science and Education, Karolinska Institute, Sodersjukhuset, Stockholm, Sweden; the Department of Mathematical Sciences, Chalmers University of Technology, Gothenburg, Sweden; the Diabetes & Celiac Disease Unit, Department of Clinical Sciences, Lund University, Malmö, Sweden; and with the Nathan S Kline Institute in the U.S.A. First, the team used liquid chromatography-tandem mass spectrometry (LC/MS) to analyze amino acid levels in fasting plasma samples from 141 children with celiac disease and 129 non-celiac disease controls. They then crafted a general linear model using age and experimental effects as covariates to compare amino acid levels between children with celiac disease and non-celiac control subjects. Compared with the control group, seven out of twenty-three children with celiac disease showed elevated levels of the the following amino acids: tryptophan; taurine; glutamic acid; proline; ornithine; alanine; and methionine. The significance of the individual amino acids do not survive multiple correction, however, multivariate analyses of the amino acid profile showed significantly altered amino acid levels in children with celiac disease overall and after correction for age, sex and experimental effects. This study shows that amino acids can influence inflammation and may play a role in the development of celiac disease. Source: PLoS One. 2018; 13(3): e0193764. doi: & 10.1371/journal.pone.0193764
  16. Ellyn J joined the community
  17. That's a good idea, I will ask about that when I call. I read through an interview that Lebwhol gave, sounded great, but sometimes when you're heavy into the research side of things you don't have as much time for patients. I can also see the benefit of seeing one of the female doctors, but I couldn't decide based on the limited information I've been able to find. Hopefully someone else here will have some experience. Thank you so much for your input!
  18. Soy as a common allergen will always be listed and must as per FDA requirements. MCT oil is great of metabolism and keto dieters for boosting the ketosis. In keto your body and brain use fats for energy not carbs...it works much better then carbs/sugars once the transition is made...like running your car on racing fuel instead of regular LOL giving up dairy is super easy and nothing to be bummed about, just tell yourself...it is for bovine, cows, makes fat calfs weigh in at 500lbs in years...not for humans, would I drink from a dog? I know it sounds bad but it helped me to convince myself as I was addicted and have to give up up over a decade ago. THERE ARE TONS of dairy free options...I eat cheese daily...kite hill makes the best dang ricotta, and the truffle and dill is to die for. Leaf Cuisine garlic and herb and smoked Gouda...OMG. Miyoko mozzarella....YES. Parma Parmesan is great....nut milks galore seed milks...I make my own often after making a nut butter and the rinse water from my stone mill is basically nut milk.... You might benefit from a keto diet....no carbs/sugars to ferment=no gas bloat. Takes awhile for your gut to regulate and the bioflora to populate to the new diet but high fat/medium protein/ no to low carb is great. Start off Paleo look up recipe slowly transition to keto and try it for a bit....might be the gears your body needed like mine.
  19. You could get the gene test before you go. Might save some time for future visits. Feel like you got some info. I would think they would all be good. I think I have heard Dr. Lebwhol give a presentation. I think I would pick one of the women. I like a female doctor for myself.
  20. A gluten-free granola sounds good. I sure hope my stomach can start handling more fiber again soon. Thanks for info on the aminos. Can't wait to get them. The teriyaki will be nice for summer cookouts too. I hope you get all set for the food truck. That would be great.
  21. LilyR started following Celiac people and Black pepper
  22. You could try the pepper and see how you feel. If it bothers you right now, try waiting until your stomach heals more being off gluten and then you could try it again. Or if you have issues with GERD or stomach acid, I heard spicy or hot foods can aggravate that, especially at night. Otherwise, I actually just read that black pepper is good for digestion.

  23. San Diego- Where to Eat?

    icelandgirl replied to icelandgirl's topic in Gluten-Free Travel

    Thank you again CL! You've been so helpful. I can't do the Starbucks sandwich...both soy and millet in there. Millet causes me terrible pain...found that out the hard way on vacation once.
  24. My Ulcerative Colitis reacts to sugars, and some starches....I am fine with all the fiber in the world minus the sugars that cause UC flares, fermentation and gas. I use Juilian Bars as they lack sugar. I sometime venture a bhu bar....honestly the coconut secret ungranola bars are a genius idea. I have debating using my wholesale account to buy them and other bars/snacks I trust and stocking vending machines...they are something I would trust out of a food truck/store if I had one to give you a idea of my praise for them. Julian Bakery also makes a gluten free, grain free granola that is low carb. And I know a few other companies that make granola grain free..but loaded with sugar. Yes the plain coconut aminos....just like soy sauce in everything. I just use a splash....sugars again but I love the flavors. These 3 sauces are in my planned food truck for stir fry bowls if I get the investors/business partners hince my accounts already set up.
  25. Thank you so much for the link. I was searching online for quite a while last night and getting no luck, and then ended up finding one on the vitamin website I was going to order my magnesium from. I don't know how I missed it. I guess I just had in mind to be looking for a pill or capsule and wasn't even thinking to check the ingredients in the drops. I am really happy to see these vit D drops though. In a few weeks I might finally be all soy-free and corn-free and I am hoping to get rid of this bloated stomach. If not, I still might have to try giving up dairy (that will really bum me out though). Can soy have any different names that we might not recognize? Like some sneaky ingredients other than the words soy? Some vitamin ingredients might say things like "vegetable cellulose" or like another ingredient, MCT Oil (medium chain triglycerides)-does anyone even know if MCT oil is healthy? The drops on the website I was going to order from, that is one if their ingredients in the D drops: "Other Ingredients: MCT Oil (medium chain triglycerides). MCT Oil from coconut/palm kernel oil."
  26. Ennis_TX started following IS SOY SAUCE GLUTEN-FREE?

  27. IS SOY SAUCE GLUTEN-FREE?

    Ennis_TX commented on Jefferson Adams's article in Additional Celiac Disease Concerns

    Jesus this is outdated article someone delete this misinformation before it kills someone (Exaggeration but seriously it can land some of us in the ER) This is the same kind of s$#& that is leading restaurants to think soy sauce is safe for celiacs and making people sick and the recent issues and articles from gluten free watch dog....do not want to be biased....PUT A BIG RED BANNER ACROSS THIS ARTICLE WITH A WARNING. She said we could share these https://www.glutenfreewatchdog.org/news/make-no-mistake-about-it-wheat-based-soy-sauce-is-not-allowed-in-foods-labeled-gluten-free/ https://www.glutenfreewatchdog.org/news/restaurants-and-gluten-free-menu-claims/
  28. Yes, I did tell the person in the office that. She mentioned genetic (cheek swab) testing for markers and a couple of other things. I will get more information when I call for an appointment, but I need to decide on a doctor before I make the call.
  29. Did you tell them when you made the appointment that you are gluten free for years? They may tell you to do a gluten challenge first, so you don't waste your time and money.
  30. i3oogieDown started following Planning a visit to Columbia University's Celiac Center - Recommendations needed
  31. Hello all - please forgive me if this has been discussed before, as I'm having trouble finding existing info in the forum. I am planning a trip to the Columbia University Celiac Disease Center ASAP, based on a recommendation from a family with a Celiac child in my area. I've been gluten/casein free for nearly 5 years now and I'm looking for a diagnosis, as well as some information and direction on other health risks and any risks to my new baby (8 months and currently eating gluten free because I am). I have at least one relative that's in the same boat - gluten-free for years but undiagnosed. Nobody in my area is knowledgeable about Celiac, and I'm not getting the information I need. https://celiacdiseasecenter.columbia.edu/about-the-center/celiac-disease-center-team My question, for those of you that have been there (adults) - Between Drs. Liebwohl, Krishnareddy, and Lewis, which doctor have you seen? What did you think? Who would you recommend, and why? Thanks everyone, Sarah
  32. Thanks for that info. I am seeing a 3-pack on amazon and it has the teriyaki, garlic, and then one called original coconut aminos. Would the original be similar in taste to soy sauce? Also going to their website, their coconut snack bars look good too. Have you had any of those? If so, did you like them. Speaking of bars, I am seeing some called Larabar in a local sale flyer that look to be gluten-free, soy-free, and dairy-free. I am going to try those. Only thing is so full of ingredients like nuts and dates with the fiber in them, hopefully I am okay with it. They sound really good though. Have you ever tried those?
  33. I will start a food diary again. I was doing it before the GI visit as instructed and then she never even asked about it. I actually didn't find going to her of any use so I wont be going again. They didn't even return my phone calls so I could make my first appt :(. Good to know that you have similar issues with something being ok in certain forms but then not in different form. Thanks for the links as well....I will take a look.
  34. It sounds like you have several intolerances...I am Celiac...and I am Lactose Intolerant...corn and all grains bother me..I think you need your Ferritin levels checked..that's your iron stores..and where you were having your pain..could be your Gallbladder which goes hand in hand with Celiac as well..if you have it..I wouldnt go back on gluten.(continual diarrhea)...so no official diagnosis..but now see a GI and they are positive I have it..proof enough for me...gluten-free 6 Years and counting..I will never knowingly eat gluten again...GOODLUCK..and research is your friend!
  35. Ennis_TX started following Almost 4 year old with symptoms even after being on a gluten free diet, Celiac symptoms? and I think I might be allergic to flour
  36. Yeah all can be symptoms of celiac...it has 100s of symptoms and manifest differently in everyone. I had minor stuff and things I just grew up thinking were "Normal" but after some stupid drinking one night and a shock to my immune system they sort of flipped and got much worse and then became more apparent. This disease is like a chamelon and often a shock to the immune system can cause them to change. ONLY way to know is to keep eating gluten and getting tested. Keep a food diary, record what you eat and reactions and times. EAT GLUTEN Daily til the testing is all done as they test for antibodies to the disease. https://celiac.org/celiac-disease/understanding-celiac-disease-2/diagnosing-celiac-disease/screening/ I developed Ulceartive Colitis as another issue and it seems it was sort of a complication caused by the long diagnosed celiac....at least that is what the impression the doctors gave. With it I have to avoid gluten, soy, dairy which I was already avoiding for celiac, intolerance issues with soy and lactose, and a whey allergy. But found my triggers to also be fructose/glucose and carbs. Had to go keto/paleo to manage it on top of my other issues. Food intolerance issues go with both these disease and the food diary will help you find if you have any. Eat food on rotation and look at how to use a food diary properly to find your intolerance issues and work on building a diet that works best for your body.
  37. Allergy to the flour or the seasonings they blend in with it. Look into getting a pollution mask for work or something like this respro.com/store/product/techno-mask See about getting some allergy testing down, Celiac is a whole different animal, I would probably shoot someone if they threw flour at me as legitimate fear of my life though. With celiac we have to worry about inhaled flour getting trapped in mucus in our nose and throat and running into our digestive tracts and triggering out immune systems to attack our bodies. Celiac is autoimmune disease....the gluten protein in flour causes our immune systems to go berserk and for different people can attack different parts of our body mostly the small intestines but in some cases brain, nerves, skins, etc. While celiac and a wheat allergy is possible we normally do not get the sneezing, drainage, allergy effect from it.
  38. I would say go over the basics with teh 101 thread maybe you missed something, there is a huge learning curve with this disease. Is the toaster 100% gluten free? Is the House gluten free? Did someone spread peanut butter on gluten bread then dip the knife back in the jar? https://www.celiac.com/forums/topic/91878-newbie-info-101/ We do suggest a whole foods only diet, honestly most gluten free foods...are starchy/sugar nightmares of compromise to simulate gluten products. I personally have to go with grain free and starch free versions for a other disease that developed as a complication. This leads my gluten-free products to be healthier and less processed... check ingredients and try to keep processed gluten-free foods as treats not staples. Whole foods are best....OH I know when I do not feel well...I prefer blended meals...I really just prefer nut based porridge (Sweet with extracts and stevia, or savory like congee, High in fats and good way to put on weight) and mushy microwaved omelettes with nut milk, blended steamed veggies soaked gluten-free nut based breads, and nut flours/butters....Just seems to sit better then solids.
  39. Hi, I've been lurking here for some time, but it's my first time posting. I write now because I suspect my symptoms can point to celiac disease. First off, there's a history of autoimmune diseases in my family. On my mother's side there's psoriasis, diabetes and ulcerous colitis. I've always been short (5 ft., while both my siblings are much taller), and Just read that short stature can be a sign of celiac. I've always been a fairly healthy, but the last few years (I'm now 25), I've gradually become more and more ill. My main symptoms are: fatigue, worse hangovers, headaches, diarrhea that comes and goes, loose stools, an urge to go to the bathroom after eating, abdominal pain, bloating, back/neck/shoulder pain, some bone and joint pain, shortness of breath, mouth ulcers, nasal congestion, sometimes swollen lymph nodes, feeling warm and feverish without having a temperature, keep forgetting stuff (you know when you walk into a room to get something and you forget what you were going to get? That's me, all the time), anxiety, sometimes dizziness and nausea, skin changes (always had very flawless skin, now I get more pimples, especially around the mouth and on my chin). That's it - or at least what I can remember at the moment. I know it's a long list of symptoms, but I'm wondering if they sound familiar. The thing I'm wondering the most about is the fact that I have difficulty tying the symptoms to specific Foods. But that might be because I eat gluten most days - I love bread, pizza, pasta, beer etc etc., so I eat/drink it most days. Also, my symptoms have developed slowly over maybe five years or something, and I think it began after I was sick with a bacterial infection and went on strong antibiotics. So, to sum up my questions: - Does my symptoms sound like celiac symptoms to you? - Is it normal for celiac symptoms to develope over several years and become worse? - Is it normal that it's hard to link the symptoms to specific food before diagnosis, or should I have been able to tell "oh, that Comes as a reaction to the gluten I ate 1 hour ago"? Wow, that was one long post. Hope someone can be bothered to read the whole thing...!
  40. Hi, It sounds to me that your daughter may have other food allergies or there is cross contamination occurring somehow not matter how careful you are. Cross contamination can occur in the field that the crops are planted and not necessarily the processing facilities. For that reason, I have opted to go grain free. Lactose Intolerance is also a symptom of Celiac disease so removing dairy products from her diet was a great thing. Also be very careful of those Gluten-free process foods since they contain ingredients that does not go well with everyone who has Celiac disease. Corn can also cause problems and make sure you use grass fed beef and cage free eggs! A food allergy test is a great idea because it would tell of other foods that may be causing the immune system to react negativity.The good news is that she is young and her recovery will be shorter than someone who P.S You show have her vitamins level checked for deficiencies as well!
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