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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. For Additional Information: Subscribe to: Journal of Gluten Sensitivity


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About ChristineSelhi

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  1. Dna Test Advice

    I had already started the gluten free diet by the time I could have any antibody tests done. I am so sensitive that I break out from just crumbs on a stick of butter, and I get sick for days from small CC, so I wasn't willing to go back on. So, I guess I have to live with what I got. Either way, I don't eat gluten. Thanks for your reply!
  2. Dna Test Advice

    Hi All, I got a DNA test back in 2004 that told me I was nonceliac. I just called to get the test results to really understand what the diagnosis was, because I have been gluten free ever since, and have had a number of nurses and doctors tell me that I still exhibit symptoms of the disease. I tested negative for DQ2 and DQ8. Does this mean I do not have celiac? Also, I have heard a couple of different things about the percentage of people with celiac disease who have these genes. I have heard anything from 85%-99%. Any words of wisdom?
  3. Just Patting Myself On The Back

    I got my test results in the mail and I am DQ2 and DQ8 negative. The numbers are very different depending on where I look, but I remember my doctor saying at the time that 85% of the people with celiac had these two genes. Anyone know what the numbers are now?
  4. Newly Diagnosed And A Wedding This Weekend

    Every wedding I have gone to, I have just walked back to the kitchen and found either the chef, the catering manager, or the wedding planner--sometimes they have a headset on. They will make you food on site. Once they brought me a plate of my own appetizers at cocktail hour! Make sure you find the people in charge, though. The servers do not always know what is in the dishes. Most caterers are even more conscious of celiac disease than restaurants. This has worked for me every time. Two out of three times, I have had the server come up to me and say, "You are the gluten girl, right?" or if I start to explain, they say, "Oh, are you Christine? You have celiac disease right?" These guys are very well trained. They aim to please. Don't be afraid to talk to them!
  5. Newly Diagnosed And A Wedding This Weekend

    Ugh, that is awful. Tell him to get diarrhea for a week and a headache and a sinus infection and be unable to get out of bed for at least 3 days in a row and to have an ugly rash on his face, oh yea, and not to absorb vitamins, and see if he whines. I'll bet he does. Just sayin'...
  6. Doctors Messed Up - Need Advice!

    Dear celiackidmom, Congratulations on your decision! I have been struggling with my own diagnosis, and I think that the thing most of us with celiac disease and gluten intolerance need is validation. That your son has your for a mom telling him that he is not crazy and that this food hurts him is the best thing for him. If eating anything with gluten makes him feel bad, then it really doesn't matter if he has Celiac (as the only thing it means is that the celia in the small intestin are flattening--not to diminish that symptom! It can be devastating). I say be thankful that as a kid he manifests symptoms and can stay away from the food that causes those symptoms. I know some who have kids who have celiac disease, but don't exhibit any painful symptoms, so they don't take the diet seriously. In a way, his symptoms are a blessing, since childhood disease (like celiac and diabetes) can be so hard for the young ones to handle. I wish that I had known so early, and I wish I had had a mom to support me through it the way you are supporting your son! (My mom is supportive, but I didn't find out until I was 27, and she wasn't there to make me food!) Also, there are doctors who will give a diagnosis without blood tests. I am not 100% sure about DNA tests, though, as they don't completely understand which genes are always present in people with celiac. This was my problem, since I didn't get blood tests before I stopped eating gluten. I was never willing to do a gluten challenge--more like a month of hell and 6 more months of recovery. Good luck and god speed, and thanks from one gluten-intolerant/celiac for taking care of another!
  7. Borderline Testing

    Hi there, I am officially gluten intolerant, but have been struggling with diagnosis myself, since I didn't find a doctor to do the testing until after I had stopped eating gluten. I DID have the DNA test, and it said I did not have the "right" genes to be a celiac. That was 5 years ago. Now I do not eat gluten at all, and I have been told by my doctor that for my safety I should identify as having celiac disease. I say give the diet some time. It takes at least a year to figure out what has gluten and what does not and what specific foods have a higher instance of cross-contamination. I still have breakouts and sick days from unknown gluten intake and I have been gluten free diligently for over 2 years. If you feel better on a gluten free diet, then eventually as you rid your system of gluten, small amounts will not feel good. For this reason, I think it is okay to identify yourself as a celiac. There is so much that doctors don't know about celiac disease, and because of that I have stopped taking chances. I don't believe we really know the long-term effects. I know that I am sick for days, if not weeks, when I ingest small amounts of it. And that is enough for me to say I have celiac disease, especially if it makes the person who is serving me food take me more seriously. Since you have been given a "borderline" diagnosis, I say use whichever term you want, but in my experience, especially when it comes to carterers and restaurants, "celiac disease" is taken a lot more seriously. It should not be this way, but it is. Or, you can use the term one of my other gluten intolerant friends and just tell them you are a glutard. Though some find that one really offensive!
  8. Just Patting Myself On The Back

    Hey everyone, thanks for the support. It's tough out there, and I am very happy to have found to go to when I am feeling frustrated or confused. I have an innate desire to understand things, especially when they effect my life so much. Anyway, I await the mail, and then I can make my own judgement of how I feel about how I present it to the "general public." At the behest of my doctor (new gp who didn't do the original tests) and my husband, I have been identifying as a celiac for the last 8 months or so. It does make it so much easier than explaining how complex my reaction is. I say this as I scratch my chin (which is itchy and a little broken out) and wonder what the heck I ate this time that was contaminated with one one-hundredth of a percentage of a gram of gluten. Sigh. But, I have found the thing that makes me feel better, and for that I give thanks.
  9. Hi Everyone, I posted over a year and a half ago about possibly being a false negative for celiac disease. After a number of cross-contaminations that left me out of commission for a few days each, I have decided to take matters into my own hands. I am nearly certain that I have celiac disease, and also frustrated with the distinction between celiac and gluten intolerance, since it seems that many people in this forum have symptoms as debilitating as those who have the official diagnosis of celiac disease. I also just don't believe that doctors understand this well enough to know if their methods of diagnosing are accurate. I was never offered a blood test before I stopped eating gluten, and I was never willing to take the gluten challenge, so they did a biopsy of my small intestine and a DNA test. The biopsy looking for flattened celia was somewhat useless, since I had not been eating gluten for some time, and The DNA test came back as non-celiac. I posted on here wondering if there was anyone I still could have been a false negative, since my symptoms when glutened (bowel movement problems which I won't detail here, IBS, vitamin deficiencies, brain fog, etc) all point to celiac disease. I know it shouldn't matter, but it does matter to me, because sometimes it makes me feel crazy when people treat this as a food fad when I tell them what I can and cannot eat. Some people can be very mean about it. So, I called the doctor who did the DNA test to get my exact results. I hope this will lead to more clarity. I can't believe it took me a year and a half after that first posting to do so. I was just kind of proud of myself for finally asking. Sometimes it's the little things....
  10. Possible Misdiagnosis?

    Sadly, I was far a less responsible patient back then and have moved a couple of times. I will try and hunt them down, and see what I can find! I still have the number for the Rx though, I will see if I can get a copy.
  11. Possible Misdiagnosis?

    Yeah, they are frustrating sometimes. I have a new one who seems pretty good, but I have been not eating gluten for so long and feeling so good, I didn't think to bring it up with her....a little daft of me I guess, but oh well. I will talk to her about it, but as I said to Kim, the official diagnosis would be nice, to help me to explain it to friends and family who sometimes think I exaggerate. But, maybe I'll just use the word to help them understand Thankfully, I have a very supportive husband who sees it all, and helps me at restaurants and with dinner parties. He's practically gluten free by default. Thanks, best of luck with your son. I can imagine it must be so hard with the little ones!
  12. Possible Misdiagnosis?

    Hi Kim, Thanks so much for your response. I never did do the bloodwork, because by the time I saw the doctor, I had cut off my gluten intake. I have heard of people still having the antibodies after they went gluten free. I guess in one sense it doesn't really matter, it's just one likes to know what the real problem is, you know! Also, in a way, it would be easier to just tell people that I am a celiac, and then they take me seriously. Working through it with the family can be tough. Anyway, I will talk to my physician about doing the bloodwork. Regardless, I have gotten much more serious about making sure gluten is not in anything that comes near me. I just can't go losing whole sick days because of a lazy moment! Appreciate your input very much. That helps me to understand. I was so new to the celiac world, I didn't know what questions to ask 5 years ago, and I have had so many people say to me recently are you SURE you're not a celiac that I have sort begun to wonder myself. Thanks again!
  13. Hi! I discovered my gluten intolerance through an elimination diet years ago after a frustrating round with a dermatologist and a primary care physician who thought the break out on my face was anything from herpes to a bacterial infection. I put the brakes on when the dermatologist wanted to put me on antibiotics for 6 months (!). I was convinced of an allergy, and decided to try the diet. Lo and behold the rash disappeared after two weeks, and returned only with the re-introduction of wheat. I had a whole slew of other symptoms over the years that pointed to gluten intolerance--IBS, chronic sinus infections, ovarian cysts, vitamin D deficiency. I then sought medical attention at a Celiac Specialist up at Columbia Medical about 5 years ago. A doctor took a biopsy from my stomach (not my intestines) and did a DNA test to rule out celiac disease. Still I met with a nutritionist and reviewed diet plans and was on and off gluten for 5 years. Most recently I have been gluten free for about a year. Except for a few unexpected slips (mostly generic medication mishaps--DON'T TAKE THERAFLU!!!!) Recently I have been getting very ill from trace amounts of gluten (such as those in generic medications, or theraflu) and it seems my symptoms have gotten worse--extreme fatigue, very bad headaches, stomach aches a few hours after ingestions, and dizziness, and as always the rash around my mouth. I was told by this doctor years ago that they could rule our celiac because I didn't have a particular strain of DNA that all folks with Celiac have. I suspect though that this is more than an intolerance. A couple people I know who are gluten intolerant tell me they think I am a celiac, because my sensitivity is so debilitating. Does anyone know if, despite this DNA test, it is still possible to have celiac disease? Maybe it doesn't matter, but I would like to know, and there is no way I am willing to re-introduce gluten to get the biopsy done. I think that would do more harm than good. Thanks for any responses!! ChristineSelhi