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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.

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  1. Today
  2. Hi Readers, I see a couple people are following this thread, and maybe it will be useful to someone else in the future, so I thought I'd update. I sent a follow up email to the center with my questions, a request for clarification of some things relating to DH, and a request for the full genetic test, and they recommended I come in to see a different one of their doctors - also a Gastroenterologist. Hmmm. Husband& I deliberated, and decided to do it. Second expert opinion, but same place. In the meantime with help from this board I found two other potential symptoms related to my daughters health that I believe are mediated by an immune response to gliadin (as measured by her strong positive DGP-IgG result): she has mild clubbing of her toenails. They are thickened and curve strongly over the tops of her toes if they grow (like an upside down spoon). It was actually a symptom I found accidentally - I was actually searching to see if her 'weird' toenails might be linked to some other autoimmune condition...and guess what? Celiac is a cause. https://medlineplus.gov/ency/article/003282.htm (it was also discussed by the dad of a pediatric diagnosed celiac in an old thread on these forums.) I also noticed a patch of depigmentation on her torso. A bright white patch (it's small - about nickel sized, but definitely there.) The area hasn't been exposed to sun, and wasn't the site of a lesion. I suspect it is vitiligo - which is autoimmune, and has been linked in several cases in the medical literature to concurrent celiac. We went to the half-hour follow up with a new doc. The GI seemed skeptical of me, but said that daughter's initial celiac blood tests should be rerun (TTG-IGA, DGP-IgG), (I guess if it pops positive again we can finally dismiss the 'false positive' idea - I will be curious if this doc will also tell me it is 'meaningless'). This doc also ordered protein allergy blood test, some test to rule out other bowel complication, and we are doing the EMA test too (I requested this be added.) She told me my kid may be lactose intolerant and to trial 3 days lactose free and said the rashes sound like psoriasis. She looked at white patch and said my kid probably had a rash there and that's why she lost pigment. She looked at toenails (remember - she's a GI) and told me she thinks my kids toes just look like that. (BTW, cant tell if it is happening with fingernails - daughter is a serious nailbiter so they are down to the quick). She recommended we see a dermatologist too. Haven't followed up on that yet. It was only a half hour follow up, so by the time we went through this stuff I didn't really get any explanation / answers of the genetic test. I asked for print outs of all her full labs including the genetic tests and was told the nurse would take care of it, as doc had other patients. Nurse came in - very nice - gave me computer screen shots with entered results - no actual labs, no info beyond 'negative' or 'positive' (not even reference ranges!) I politely explained that I needed the full labs. I was told I needed to walk two blocks to a different building, find a specific difficult to access elevator, take it to a basement, and find the medical records office. (Incidentally, on my walk - with two of my daughters aged seven and five, I was sexually street harassed through a truck window / yelling, catcalling, and honking by some ass%$@#. This has never happened to me before when I was with my kids. WTF is wrong with people?? Can I blame gluten for this?? ; ) ) Anyway, I got the full records. (For which, again, I thank people on this board for reinforcing my own basic belief that answers are worth it!) . Turns out she is a double DQ7. I can find the DQ7 allele in the med literature linked to celiac all the way back to 1998 studies. I also found specific studies that had biopsy-confirmed celiacs with the double DQ-7 haplotype. And I also found this large study, out of University of Naples, published in 2015, http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0138324 that says: "We diagnosed celiac disease in 666/5,535 individuals, 4.2% of whom were DQ2/DQ8-negative. Interestingly, DQ7 was one of the most abundant haplotypes in all celiac disease patients and significantly more frequent in DQ2/DQ8-negative (38%) than in DQ2/DQ8-positive celiac disease patients (24%) (p<0.05)." and also this: "In conclusion, our results obtained in a large Italian cohort of children and adult celiac disease patients lend support to the concept that DQ7 represents an additive or independent celiac disease risk haplotype with respect to DQ2/DQ8 haplotypes. Moreover, our data questions the negative predictive value generally attributed to the absence of HLA-DQ2/DQ8 molecules in subjects at risk of celiac disease. In fact, based on our results a diagnosis of celiac disease should not be ruled out a priori in HLA-DQ2/DQ8-negative individuals carrying the HLA-DQ7 molecule, but this finding should be verified in other large celiac disease populations." So telling people that it is only DQ2&8 is really bs, which I already knew from you guys. (Apparently - and I found this from an interview link in a different thread on this site) the enterolabs guys, who has a profit motive in getting these tests right, recently said that in his opinion the only excluded haplotype should be double dq4.) When doc calls me next week to tell me new serology results, I may politely ask if the center is familiar with the myriad of peer-reviewed published medical studies that link DQ7 to celiac, and if so, why they told me (repeatedly) that my daughter is genetically incompatible and can't be at risk. We took the other two daughters for the blood tests through their pediatrician (They don't seem symptomatic to us outside of irritability (!?) but it is recommended that their risk groups be screened every three years). So...interestingly is daughter is double dq7 and it means I am dq7 too. I am going to pursue some blood testing too, to be cautious. I've never identified typical GI issues, but I have some other autoimmune-suspicious stuff happening, including peripheral neuropathy. Husband and I agree that if I wind up with positive tests it would be a really surprising outcome! But knowing what I know now, and with two sisters with hashimotos thyroiditis.....hmmmm.) Husband and I are still debating full gene testing for him. We know he is Dq7 at least, and that he is a biopsy-confirmed celiac, so the only point in gene testing him would be to clarify what else he is in addition to DQ7, which wouldn't change what we are doing for him, and is a bit pricey to satisfy our curiousity.... We may still. I'll updating again with how all three ds new tests turn out....
  3. I haven't been in a couple of years for a tater, but, when I went before, I said " allergy" and not to unwrap the potato. They handed me packets of sour cream and butter. They might have ingredients printed on them? Maybe " light" sour cream is the only kind they have? The ones I have been to told me not to get the cheese because of how it was located in their store - lidmusually off and next to buns.
  4. I went here https://www.wendys.com/en-us/gluten-info and seemed to have gotten conflicting info. In one place it's says the sour creme baked potato is gluten-free. In another place, under condiments, it lists only light sour creme as gluten-free. Anyone know for sure?
  5. The only symptom I know of that is celiac for certain is dh, which must be diagnosed by a dermatologist.
  6. I have both eoe and celiac and now that I have been gluten free for 18 months, my anemia is gone. It is good to get off the iron supliments because mine may have been the cause of my ulcers. It feels good to recover and heal! I may work my way down to fewer supliments and lots of feel great days despite eoe, celiac, ulcers, hiatal hernia, and acid reflux. I was on Flovent and omiprizol for a while but I am happy to be done with both! Best of luck! I am here if you have specific questions.
  7. Your daughter does not have a strong positive. I suspect that the GI might do as RMJ suggested which would be to load her up on gluten for six months and retest. On the other hand, with a diagnosed sibling and a very mild positive, your GI might recommend the endoscopy or run the test again to make sure there were no errors. Together, you and your doctor can decide what is best for your daughter. My daughter tested negative but she had been consuming gluten daily. I still make sure that she consumes gluten at school and while away from home. If she wants a donut, she eats it on the porch! When we test her again, it can not be after a summer because she has been on very light gluten diet. The control test? It is elevated, but not a lot. So, I would not worry. Your lab range might be have a lot of people with a lower IGA. At my lab, the range max is around 400.
  8. I was diagnosed with celiac last year on an endoscopy looking for the cause of my anemia. At the time, my GI doc tested m for EoE and it was negative. Fast forward 11 months, I developed sudden heart burn, dysphagia out of the blue. My doc thinks it's EoE. Biopsy was last week and I am still waiting on the results. I have not started any treatment yet, but I was told that allergy testing is not reliable for diagnosing the cause of EoE. An elimination diet is the treatment. About 40% of all cases are caused by gluten, 30 % dairy, and the other 30% are fish/seafood, soy, peanuts/tree nuts, eggs and "other". Currently, the GI dept/Celiac center at UCLA is recommending that people diagnosed with EoE start by eliminating dairy and gluten for 3months and seeing what happens. Since this is 70% of the causes it should help a lot of people without making them be on a crazy restrictive diet. If all symptoms resolve, then you have your answer. If you are still having symptoms after eliminating those 2 classes of food, then eliminate all soy, nuts, eggs and fish/seafood for 3 months. Then add each class back one at a time and see if your symptoms come back. ( I saw one recommendation where patients were getting a scope every 3 months after reintroducing a food class to check on healing - this seemed excessive to me). Now, I don't have an official diagnosis, so my looking into the treatment is very preliminary. I'm sure there are lots of ways to approach it. I should find out my own results in the next several days, so I guess I'll know soon whether to find a similar board like this for EoE. Just thinking about eliminating all those foods makes me a bit ill.....I love cheese and dairy. So I guess I'll see.
  9. No, the control test is to verify that she will react to that particular type of test. If she didn't, then certain of the bloods would not be applicable to her. They would be false negatives. As far as tests being weak positives, that's like being a little pregnant. A positive is a positive. Period. Since she does have one positive that is enough to move forward with an endoscopic biopsy but you really need to make sure she eats at least a 1/2 slice of gluten bread per day for a minimum of 2 weeks before the endoscopy.
  10. Thanks, I've put a call into the GI and i suspect she will say the same. I can try to have her eat more but she naturally just doesn't want many things with gluten. Does the control test suggest a different auto immune disease maybe?
  11. Hair Strand Allergy Test Results

    I can tell you I completed one of these allergy tests from a deal I found on Groupon and it was a total ripoff and completely false. I have been highly allergic to mango since I was a young child (like epi pen allergic) and mango is one of the allergies they test for, yet I came up negative. I sent them an email questioning this on June 28th and they have yet to reply (Aug. 18). Do yourself a favor and save your money!
  12. The immunoglobulin A is a control test, not a test for celiac. Of the celiac tests, she just has one that is barely a weak positive. You may want to have her eat more gluten (perhaps away from home) and retest in 6 to 12 months.
  13. Yesterday
  14. I've been here for a couple months because my son was just diagnosed with celiac. So we all got tested. My daughter is 15 and for a few months she has not been consuming much gluten at all. So i'm not sure how accurate these tests are but it looks like she may have celiac as well. Here are her labs, please help me interpret them. Endomysial antibody Iga- negative t-Transglutaminase (tTG) <2 range 0-13 negative Immunoglubulin A, Q, Serum 274 high, range 51-220 Antigliadin Abs, IgA, Deamidate Gliadin Abs, 21 high, range 20-30 weak positive Antigliadin Abs, IgG, Deamidate Gliadin Abs, 3, range 0-19 negative.
  15. Before the extensive supply of packaged gluten-free foods, most people with celiac disease would cook their own meals and rarely venture to dine at a ... View the full article
  16. Yes, that helps greatly...it is a screen resolutions issue. We should have a fix shortly...thank you!
  17. Gluten In Hair Products

    The migraines are probably from you inhaling and ingesting gluten without realizing it. Hairspray and powders are no different from wheat flour. The particles are in the air for quite some time (hours) so you can inhale it and get sick. Everything in that salon down to its pens, tools, cabinets, and chairs have gluten residue all over it. Ever put a pen or bobby pin/clip in your mouth or eaten something without washing your hands? I always used to get migraines when I go to salon or bakery/pizza place. You inhale gluten (hairspray, etc.) you will probably need to wear a face mask inside like I do if they won't change to gluten-free products. It keeps me feeling great after being at the salon so I can deal with a little embarrassment of the mask. Sadly you'll need to approach it like you work at a gluten filled bakery if you can't find a salon that has only gluten-free products or won't change to all gluten-free. Your skin, hair, and clothes are being coated in gluten daily. You're breathing it in. Probably have residue on your car seat/dash/steering wheel as well once you leave work and drive home. You will need to wear a face mask to avoid hairsprays, long sleeves and pants, as well as gloves if you want no health impact. I'd also take off your work clothes once you get home and put into a trash bag and leave it in garage. Take a shower once you get home to get all the gluten residue off your skin and hair. Welcome to the pain in the ass life known as Celiacs. lol I have to do the same thing (mask/gloves) when flying anywhere. Pretzel dust is my air nemesis Lmao
  18. Absolutely! I have a history of weight loss, headache, fatigue, bone breaks, various GI issues, dizziness, sores in mouth, hair loss. I went gluten free for my daughter, who was biopsy and blood work negative (so NCGS) and belatedly realized I had all of these problems resolve on the gluten-free diet. I underwent a gluten challenge and was super sick, tested negative myself (so that makes me NCGS also). It has been about a month since the challenge and some things are not quite resolved (the dizziness primarily, hair loss and mouth sores are slowly getting better). The reality is that you cannot tell the difference between celiac and NCGS by symptoms only. And they don't really know what NCGS is yet or how to test for it.
  19. While I do see the button on my cellphone I still do not see the button on my tablet pc (it's a laptop in vertical ). I also do not see the posters names/pics. Screen resolution is 1440 x 2160 if that helps.
  20. Had digestive issues, severe reflux, dysphagia, and bloating on and off for two years. Went to GI, got endoscopy and blood test which confirmed celiac. Been gluten free for about 3 weeks now; feel great although my body is still adjusting. Additionally I was diagnosed with Eosinophilic Esophagitis; basically asthma in my esophagus. A biopsy confirmed this. Went to a food allergist, no terrible food allergies (bananas, raw egg whites, ironically I have an allergy to gluten, wheat, rye, and barley that seems separate from the celiac). Right now I'm on a PPI, vitamin D, and Flovent which is an inhaler that allegedly treats EoE in some trials. Hard to tell what my prognosis is depending on how related the two are, but I guess I won't know until I go off the medication for the a while and I have a follow up endoscopy. In the meantime I'm just curious to see if anyone else has the same diagnosis or information pertaining to it.
  21. Oops, took 30 minutes this time.
  22. Timed it, this time it took about 2 hours to be dropped.
  23. We've made more changes...please check the issues again and let me know. Also, on the forum category pages, for example this one: https://www.celiac.com/gluten-free/forum/13-celiac-disease-pre-diagnosis-testing-amp-symptoms/ the create a topic button would be at the bottom on a mobile device...probably also on a tablet...are you scrolled down to the bottom?
  24. In a recent issue of Journal of Gluten Sensitivity, we announced a research study/survey for adults who are 18 or older and living the "gluten-free" lifestyle in a household with other adults over 18. Click here to read the Survey Overview Article. The survey is a research study conducted by Jean Duane, PhD Student at the University of Denver. It will focus on family interactions when dealing with dietary restrictions, with the potential to increase family members' compliance. To take the survey, please click here: https://udenver.qualtrics.com/jfe/form/SV_4PGO6q26mnl1aXX View the full article
  25. Anxiety and Wheat

    l have a generalized anxiety disorder diganosis from around 06. l never felt like l fit into the anxiety disorders even though l was obsessive all my life, l actually do think l had a brief display of OCD behaviors around 5th grade. It really did hit to the point l had a few single panic attacks which l'd never had before around 20. l would say since, l feel very 'broadly' anxious which in some ways feels like my normal self so it's hard to tell if gluten is a factor. l probably no longer fit into the GAD criteria, no meds or coping methods. Actually l have had less morning anxiety only almost 2 weeks gluten free. Mornings have always been weird for me and l started drinking caffeine in middle school. For me it helps, anxiety seems kind of like a byproduct of brain to me maybe? l will never give up caffeine but l have been waking feeling like it's not the first thing l think about to curb all the anxiety rushing in, l normally need to filter things pretty heavily until around noon, regardless of waking up early or not. But l have also had a few brief panicky moments.
  26. Me too! I have been having issues with my internet provide (failure to connect at times), but I have the very latest in fiber optics. My modem seems to be okay. My iPad is new and up to date. I belong to a diabetic forum and I never get dropped and have to sign in again.
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